Unlock The Secret Voice

Preserving the Angst

2012-01-22T16:57:00.000-08:00

Here's a recent picture of me and my four children on my birthday!

My 13-year-old son is doing well at the small pediatric nursing facility I moved him into five months ago. But there are problems, and problems will always exist. Most of the problems are trivial and some are egregious errors. It is my judgment and perception of which problems to try and fix and which to let go from my worries and anger.

The last time I picked up my son, he was not in school, and it was 10:30 in the morning. My son was sitting in his wheelchair with a feeding bag and extension still attached to him from his 8:00 am feeding even though the feeding had long since finished. In other words, my son had been sitting in the same spot for 2 and ½ hours until I arrived. Upon my arrival, his diaper was changed, and I quickly left the facility with him.

I mentioned this to my daughter, and she asked me if I said anything to anyone about my son being left in his room and in the same spot seemingly ignored. I told her I didn’t say anything because I have to pick my grievances or I would be a complaining nut job parent who may never get listened to (i.e. a parent crying wolf.)

My son gets bussed to public school daily, and I believe the school’s level of care should be different since it would never be ok for my son to sit in the same spot for a minimum of 2 and ½ hours in an education setting. Normal students in the seventh grade are not asked to do this, and I battle a little harder at school not caring if I am a nut job parent because I have direct evidence that the articulate complaint towards the school is the only way to solve problems in the school my son now attends. Past schools did not require such battles, but this one only answers to direct complaints raised to the highest authorities.

Since I have been having so many emotional problems adjusting to my son being “institutionalized”, I sought out a psychologist for some suggestions or opinions on how to handle my sadness and anger. He asked me, “When is the caring enough?”

His question surprised me. My silence was long as I thought about what he meant. I hospiced my mother in my home until she died as I held her hand. I went through countless hours of family counseling with my then critically depressed daughter. I have spent weeks in the hospital with maladies ranging from suicidal lockdown of one of my teenagers to broken bones and seizure control with others. I bailed a brother out of jail for DUI.

What will be next? My father needing care? Another surgery for my disabled son? Surely another broken bone from my motocross racing teen.

My answer to the psychologist was that I will never stop caring because as soon as I do, care will become more lax and I will not be closely watching for what needs to be addressed. I don’t know if I am obsessed, but I am good at care taking and care giving. If I become less passionate, I am completely convinced that my judgment and skill in handling problems will diminish.

Perhaps it is a reach to make the following analogy, but then maybe it’s not so very different.

“I gotta hold on to my angst. I preserve it because I need it. It keeps me sharp (snaps fingers), on the edge (snaps fingers), where I gotta be.”

-Al Pacino in the role of Vincent Hanna from the film “Heat”

The clip is a bit graphic in nature but it makes my point: http://www.youtube.com/watch?v=t-GzWS8JXZU

Serenity

2012-01-05T21:33:00.000-08:00

The Serenity Prayers:

God, give us grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.
Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace,
Taking, as Jesus did,
This sinful world as it is,
Not as I would have it,
Trusting that You will make all things right,
If I surrender to Your will,
So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.
Amen.

- Reinhold Niebuhr 1943

For every ailment under the sun
There is a remedy, or there is none;
If there be one, try to find it;
If there be none, never mind it.

–W.W. Bartley

Last week, there was a terrible traffic fatality that closed a local intersection creating traffic chaos. Today, I found out that a woman riding a motor scooter was killed when a teenage driver made a U-turn and ran into her. A woman I’d never met before told me the details, and then said, with a tragic look on her face, “She left behind two sons.” She paused and her eyes became larger. She moved her face closer into mine and said, “And one of them is disabled!” The woman walked away, abruptly.

No, I am not going out to buy a motor scooter, and this woman didn’t know I have a disabled son. My mind is having trouble recognizing wisdom and futility, courage and service. Is it worse that the mother that died left behind a disabled son instead of two normal sons? Does it add drama to the story?

On New Year’s Day, I spoke to my grandmother for the first time in a while, and she told me she was proud of me for putting my son in a home. I didn’t tell her he’s not in a home but in a nursing facility. I didn’t say anything.

I hope we all find wisdom this new year.

Comments on a comment

2011-12-29T22:33:00.000-08:00

Working retail this holiday season, I’ve had a lot of time to think about what it means to behave rudely. A comment left by a reader is always welcome here, and this comment has gotten to me as I have strived to be the opposite of rude for endless hours in my work and in my personal life. Truthfully, I am a very un-rude person.

Part of a comment left on this blog contained this sentiment:

Rude is not giving those who care for your kid little notice about your plans for him. Group homes cannot function well on a parent's indecision and impulsiveness. Sorry if this is harsh, but I call things as I see or read them.

Thank you for the apology for being harsh because it is. My son doesn’t live in a group home; he lives in a 15-bed facility that is operated very differently than a 6-person group home. I specifically chose this setting because of some of the additional safety measures and personnel that come from a facility setting versus a group home setting.

Separating emotion from facts in a situation is always troubling for me. It even takes a physical toll on me. I like the administrator of the facility my son lives in, and I have fostered a relationship with this person and admire her on many levels. But she has made errors in the caring of my son. It is difficult for me to point out some of these errors, but I have to. I am criticizing her judgment and her actions, but I sometimes have knowledge she does not.

One recent example was my telling a nurse that my son’s Mic-Key Button feeding tube apparatus was broken in that the one way valve was no longer only one way but allowed stomach contents to stream out. This was due to wear. They didn’t change it out. I told the administrator, and it still wasn’t changed out. The facility’s policy in regard to the length of use of each button is not that of the manufacturer… the manufacturer says change it out at three months and the facility does it at six months. The administrator was genuinely not aware of the manufacturer’s recommendations.

My son was the only child that left at Christmas. I know this because the nurse couldn’t find a necessary form that had to be signed for my taking his meds and her telling me that no child had left to go home in a long time… except mine. I tell the staff my plans for my child in a timely fashion. I am not rude.

The facility, on the other hand, has told me my son was scheduled for appointments and given me the wrong times and dates for which I showed up. The facility has made medication errors, appointment errors, and the administrator told me that she only had about twenty minutes for my son’s IEP because she had another appointment. We rescheduled the IEP. She had never had another parent come to one and none of the other children at the facility are receiving any special services… she was ignorant as to what happens at a typical IEP.

Rude? How do you not be rude sometimes? How do you not offend people who are honestly trying to do a good job but cannot due to inefficiency or lack of experience?

Rude? How about coming in to see your son and find him wearing some other child’s shirt with a picture of Grumpy from Snow White on it? I didn’t act rudely when I simply changed his shirt and put the other in the laundry bin with nothing said.

Rude? How about finding out your son was kept back from school because they thought he was sick when the school’s automated message tells you he has an unexcused absent? Yes, they are supposed to call when he is ill, and, no, they don’t bother to call the school or teacher when he doesn’t attend.

My point is that the comment left did get to me because I am trying so very hard to find a median of how to do what I have to for my son while maintaining a very good relationship with the facility’s staff, and so far, I have done alright.

Perhaps my complaining on my blog is rude of me. It’s true that many disability blogs frustrate me as they are full of complaints, and mine is among them.

My mom started reading cancer boards online when she was diagnosed with cancer. This was before blogs were out there, and the bulletin boards were more in use. She told me how she was tired of one woman’s constant complaining and told her to stop complaining and toughen up, or something along those lines. The other posters came down hard on my mom for posting her sentiment, and my mom felt conflicted. Had she done wrong hurting the woman’s feelings? Was she right to be involved in the conversation even though her perspective was harsh?

My mom was wrong to hurt the woman’s feelings, and I think my mom knew she was wrong because it bothered her, and she brought it up with me to ask my opinion. On the other hand, she was voicing her own feelings about how her own battle was going on that day, and it wasn’t going all that great, so being strong and not whining was important to her.

Here on my blog, I can write, “I didn’t appreciate what you wrote in your comment, but I am glad you are reading and glad you took the time to respond.”

It's just not working very well...

2011-12-19T16:44:00.000-08:00

An email came this afternoon from the facility administrator where my son has lived for four months. She simply asked if I was going to be picking up my son for Christmas. A normal person would have quickly responded back that, yes, indeed, I would be picking him up on this day and dropping him back off on this day. But I am not normal, I now realize.

My response? Way too much thought. Why does she want to know if my son is going home or not over Christmas? Is she trying to schedule staff and needs to know the body count? Is she shopping for gifts? Does she want to make sure he's clean, which he should be anyway?

I do not usually give more than a couple hours notice when I pick up my son to keep overnight, and I give some notice so the nurse has time to pack up meds and feeding supplies. I have been told, repeatedly, that the other kids do not go home... ever. Some are wards of the state, so to speak, in child protective services, and some are too difficult for the parents to take care of. So, why does the administrator want to know? A normal person would just move on and pick up his or her life and run to the goal line, but what does the abnormal person do? She dwells and worries and fails to make decisions.

In the end, I emailed back that I would be picking him up on this day and dropping him off on that day and did not ask why she wanted to know. I filed this trivial event in the "Let it go bin," but the fact that such a bin exists, and is very full, is further proof of my not doing very well with others taking care of my son.

Institutionalization

2011-12-05T12:49:00.000-08:00

How do you accept that your child is institutionalized?

Our country, and much of the western world, has deemed institutions to be not where our severely disabled children and adults should be, so we’ve switched to a group home atmosphere. As I have found, the group homes are still institutions, and the care of our loved ones can be very different than what we offer as parents or even children of elderly patients. How do we accept this? Should we accept this? When is it appropriate to try and make these situations work?

This morning, I angered the orthotist assigned to making my son’s othoses (AFOs). He said he visits the 64-bed sub-acute facility along with my son’s 15-bed intermediate nursing facility every Thursday morning. He cast my son, with the help of an associate he brought with him, without me there and decided upon a style and color of orthoses without my consultation because he didn’t know I wanted to be there or that I was involved. He said he ordered a “standard boot” AFO for my son. I told him that my son has had many different “boot” AFOs and we both know they are not standardized. He then tried to tell me that Medi-Cal only authorizes certain types here in CA. I said my son has private insurance that must be used first and that his Medi-Cal is secondary. He said he was not aware of this.

The orthotist then told me his company has been in business for over thirty years and that he has been going to the facility himself for over ten. “So what,” I said.

So what. Not the best reply, I admit, but he’s obviously not used to an informed parent or even an involved parent. Institutionalization at its worst. No, not at its worst but at its usual.

Would I be better off being ignorant? Would I be better off not knowing what the most highly regarded people on the subject have said should be done for my son? Twelve years of every known kind of specialist rounds throughout all of southern California and Boston have informed me, for better or worse, and am I now supposed to trust the care of my son to a couple of people that work by rote on kids whose families don’t know any better?

Maybe I am. Maybe it doesn’t matter in the end, but I don’t know if I can live with that kind of apathy. I know I can’t.

I was going to write that I have overlooked so many things that bother me about my son’s care, but, in reality, I have accepted much of what is happening or not happening with him. Things never go overlooked. They go un-complained about.

I am hoping that my son’s uniqueness pours over into this situation because I want the people who really need their loved ones to live outside their home can live with that choice and even be happy with their decision. I hope my situation is unique in having a son who can crawl yet is cognitively so low functioning he does not know his name because it makes life hard to create a safe and healthy environment for him.

It would be easier if I hadn’t devoted my life to taking care of him and searching for a diagnosis and everything that is best for him for the past twelve years, but I did. As the facility nurse said, maybe I am just not cut out for having my son live away from me. Should I try and change me or the situation? Believe me, I have many telling me that I need to get over these things and move on… that my son doesn’t know the difference. And he probably doesn’t know the difference. But I do. I can’t seem to escape the knowledge. I can’t escape the desire to want to be there to comfort him and make sure he is safe.

I sought out this facility. I made the decision that I could no longer care for my son by myself and that home nursing was not adequate help, and I made this decision after years of trying to make a life for myself and failing. This brings me back to either accepting the institutionalization of my son or not. There will always be people encouraging both sides of the argument. There will be good days and bad, even good months and bad in both situations. Like faith, it is a personal decision and a leap. My mind may hold one belief but my heart and body frequently follow another.

No one is saying, “Bring him home, and I’ll help you if you need it.” Only my daughter, who turns twenty today, has said, “He’s only twelve. Doesn’t he belong at home?” Yes, but he will still be the same when he is eighteen and twenty-two. Does the question change when he is no longer a minor? Will I wonder why I cared for him at home when he is still the same at thirty and I am old and tired?

And lucky me, I get to go off and work at the mall now and please all the holiday shoppers! Sometimes, I see a family with a disabled child walking through the mall, and I feel sadness and longing for my son. But it’s a good thing that I feel that way, isn’t it?

Still a Rough Ride

2011-12-02T13:08:00.000-08:00

My son moved into a residential pediatric 15-bed intermediate nursing facility on August 12, 2011, which was 112 days ago. He’s twelve years old.

Yesterday evening I received an automated phone call from his school saying he was absent with no note or phone call, so I called the facility to see why he didn’t go to school. A nurse said he was kept at the facility because the orthotist came to see him for his AFOs. I became upset as I was not told he was coming and had made it abundantly clear that I was to be there for this visit.

The administrator emailed me about an hour later apologizing for the oversight, and she provided me with the orthotist’s first name and phone number. I left messages for the orthotist early this morning who left the office early today. I do not know what he did with my son, and I do not know what he is planning on making for my son.

Yesterday was my only day off of work this week (holiday retail is keeping me lowly employed), and I could have been there or visiting with my son, but I thought he was in school.

Later yesterday evening, I heard this story on public radio: http://thestory.org/archive/the_story_120111_full_show.mp3/view

About a third of the way through the program is Kathy Dygas’ story of trying to survive on welfare cuts in Detroit while caring for her disabled son and daughter. Most people that would ever read this blog can understand her story.

Today, I am left thinking about my options and my son’s options, which I think about all the time. The people around me tell me I cannot take care of my son and work, but having my son taken care of by other people is leaving me anxious and unhappy. My son does not receive SSI right now, but the state would like me to apply so that all but fifty dollars a month could go towards his bill for being at the facility. SSI would be less than $700.00 a month if he were to qualify for it.

My efforts at my son’s school got another aide hired for the classroom, and the head of special education tells me it is a permanent position, but the teacher says the nurse doesn’t want to train the new aide because the aide is being hired on a weekly basis. They don’t know who will show up on Monday morning each week, or if anyone will show up. The nurse is not housed on the campus but works out of the district’s offices and oversees many schools. And she is brand new.

This morning I received an apologetic phone call from the school counselor who got the dates wrong on my son’s upcoming annual IEP. This is the same person who failed to invite all pertinent people to the IEP meeting to begin with, and then she invited them on the wrong day.

The most difficult part of all of this is that my son looks good. One staff member noticed my son likes to lay with a blanket over his head, so she puts the blanket over his head when he curls up to try and sleep. I gasp and she tells me that my son is perfect and to stop worrying. As I keep dropping more weight and find my food aversions growing, I know I cannot keep going on like this… waiting for the accident or error to occur that is life-threatening. It’s getting harder to drop him off after visits and more heart-breaking as time goes on.

One nurse said to me that maybe I’m not cut out for having my son live there. Well, I know that, but what are the options? There are none.

On Hiatus

2011-10-01T08:34:00.000-07:00

I admit that I do not read other disability blogs very often anymore. They make me angry, sad, and frustrated, frequently, and I don’t expect other people to read my blog. I always appreciate comments on my posts, but, lately, I don’t feel like sharing all that is going on because I don’t think it is constructive.

The one invaluable lesson I have learned as a parent of a severely disabled, undiagnosed boy of twelve is that everyone handles disability differently and from their own unique perspective. The actions we choose to take or not to take in regard to our children have to be viewed first and foremost from our perspective of our own unique challenges and lives. Critiquing others’ actions towards disability feels like a waste of time but telling the stories of our lives I find to be a tremendous gift.

I am embarrassed that I have my son living in conditions that are not as good as living at home if there were additional assistance for his care. I am embarrassed that my son is attending a school that I find so inferior to his needs for comfort and happiness that I have been sick about it for days. I am embarrassed that my son is not with me at home right now or that I am not finding a cure for cancer to make his absence worthwhile.

But if my son were here with me right now, I would be exhausted and troubled, too.

My point is that I don’t want to write about this anymore. I want parents to go advocate for their kids, normal and disabled alike, and I will do the same. I do not want the burden of knowing my son gets to go outside for a walk at school everyday because I demanded it while the teacher believes some of the kids don’t care if they go out so they do not. I hate knowing there’s a girl in my son’s class who can communicate really well with gestures and an old lousy assistive technology device, and she’s left to sit in her wheelchair, ignored, as the teacher and aides change diapers and hang feeding bags.

I am tired of disability, and I am hugely embarrassed by that.

A hiatus from writing here seems appropriate as I am too full of emotion to be helpful to anyone, and I do not wish to offend anyone. I wish I were still angry as that brought me great strength, but now I am embarrassed and disgusted with myself and the community my son lives in and non-learns in. But I’ll be working diligently to change both my attitude and my son’s environment. After all, he is one of the four loves of my life being my youngest son.

Proof it works

2011-09-27T14:55:00.000-07:00

My son came home from the children’s facility for the weekend, and he looked great! It’s been almost a month and a half, and I have to admit, it’s going alright. Actually, it’s going better than alright although it’s still impossibly difficult emotionally for me.

My last post was a letter to the school district’s Director of Special Services, and he answered Sunday evening while I was taking my son back to the facility. The Director said he thought we should talk, and we did the following day for the full half an hour he allowed for the meeting. Two changes have been immediately enacted. First, the students are going outside everyday, and I was told today by my son’s teacher that all students are not going out but my son is. I think I have to be satisfied with that.

Second, an emergency/disaster preparedness plan is being reviewed, documented, and made available to all the parents of the students in my son’s class. I found out today from the teacher that they did have one more aide last year, so this safety review is a relief for me.

I have learned much and feel better about my son in school. I am planning on going to observe for a full day so I can see all is happening as they say it is to my satisfaction. But it’s hard to argue with my son looking good, acting good and growing well.

The downside is that my son is very scheduled, and the facility wakes the children between 4:30 and 5:00 am everyday to prepare for school. They arrive at school at 7:00am and the school staff feeds them breakfast and lunch. When I had my son at home over the weekend, I found him used to being fed at midnight every night and waking very early. How much of a problem is this? Only the future will tell, but I can live with that. They put the kids to bed around 6:00 to 7:00 pm due to rising so early, and my son seems to be doing fine with this. It may even suit him.

So, I now have proof that the facility is doing a good job and the school is willing to meet his needs for the most part. But I will say, it was extremely difficult dropping him off on Sunday evening. It was even harder to say goodbye and walk out the door. What’s sadder than that? I’ll eventually, probably, get used to dropping him off. I'm just going to try not to think about that. My favorite nurse was on staff both when I picked him up and when I dropped him off, and she told me the kids do better when they see their parents a lot. She also said none of them go home anymore, and she was very glad I was taking him home for the weekend. She encouraged me to keep doing it... and no I don't think it was to lessen the workload. She's a very matter of fact not all that friendly nurse who just says it how it is. So bring him home I will because it's good for both of us.

Time for action!

2011-09-21T18:04:00.000-07:00

September 21, 2011

Dr. ____ [Director of Special Services],

My twelve-year-old son, Christopher, recently began school at ____ High School in the severe-profound class. He is new to ____ School District and moved into the intermediate nursing facility (ICF/DD-N), _____, and now resides in your school district.

There are currently ten severely disabled students in his class who are all wheelchair bound and incapable of operating the wheelchairs themselves. There is one teacher and two paraprofessionals in the classroom. I fear for my son’s safety in this setting. My son has a seizure disorder and is tube fed, and I do not see how this low number of staff can meet the medical and safety needs of all the students.

There is great concern for my son’s safety and I feel that my son is being "warehoused" on the ____ High School campus with other students who cannot speak or walk or even feed themselves. If there were an emergency in the classroom, such as an earthquake or fire, I cannot conceive how the staff would be able to meet the core safety needs of the students. Who will triage and prioritize which students are evacuated first? Has the staff been trained to return into a dangerous situation three times to aid and evacuate the other helpless students? If my son, or another student, is in need of medical attention requiring a staff member to stay with him, will the other students be safe?

As far as meeting my son’s needs of being with non-disabled peers his own age, I cannot see how that can happen on a high school campus when my son is a seventh grader. He cannot participate in any middle school activities, and I as a parent cannot participate in any middle school community activities with him. Additionally, only three students leave the classroom per day, and they rotate who gets to go outside. It saddens me greatly to see my son attending school in this classroom. How does this guarantee my son a FAPE?

I have many concerns about my son's placement, but first and foremost is his physical safety, which is far from guaranteed.

I look forward to your insights, thank you for your time and concern.

Sincerely,

Kelly ____, mother of Christopher ____

The letter became necessary after no one would take responsibility for my son's placement, and the staff in the Special Services Department, who were cc'd on this letter, would not return my phone call. Eight of the ten students in the class live where my son does in the facility, and no parents attend the IEPs. The administrator of the facility is in charge of attending and authorizing the IEPs, and she is lovely and kind but not informed and knows she is not. She wants to be informed from a legal standpoint. Hopefully, this will begin our educations. My son's initial IEP is set for the first week of October after being pushed back after I began to ask why my son was placed in that classroom. I will be attending.

UPDATE: Friday, 9/23/2011 5:15PM There has been no contact with me from the school district 48 hours after sending the letter to the Director of Special Services. I am extremely disappointed and worry about my son's well-being while at school.

Manifest Abilities

2011-09-17T15:41:00.000-07:00

While I was pregnant, it seemed the whole world was pregnant and that everywhere I looked I spied pregnant women. Now that my severely disabled son is living in a children’s facility instead of at home, I see disabled children everywhere with their families. This morning, a father rode a modified bicycle with his very disabled son in a bike seat on the front of the bike. The boy was extremely thin and looked to be about ten-years-old with obvious leg muscle atrophy, and he wore a helmet, sunglasses, and appropriate bike attire. They stopped next to me at a red light, and the father gave his son a drink from one of the water bottles fastened to the frame. I almost cried, almost…

There was an obvious autistic boy at Target along with a baby with a shape forming helmet on its head. There was a girl in a wheelchair out for a walk with her family. I see the disabled everywhere, everyday, and I am affected. I have strong conflicted feelings.

“A man must not deny his manifest abilities, for that is to evade his obligations.” -William Feather

I worry that I am evading my obligations having my son cared for by others. It turns out that I still must manage his life a great deal as far as his schooling and medical cares are handled, but I don’t literally take care of my son anymore. I visit and hold him. I bring him home for a day and let him relax, but I don’t feed, change, bathe, clothe, and medicate him very often anymore.

For those of you that have placed your child out of home, you understand my feelings. For those of you who fear you may be in my shoes some day, I feel for you. Nothing is better, but then it is not worse, either. The impossible life of caring for my son has been replaced with the impossible life of letting others, who can be inept frequently, care for my son. My son is becoming institutionalized. And this is impossible to accept, and yet I am right now.

My son is developing kyphosis, a curvature of his spine, but it is not a problem as of yet. In talking with the physiatrist who comes to the facility regularly to see many of the children, she told me it wasn’t bad at all compared to most of the kids she sees here, and she meant the kids in the two facilities on the campus. My son’s care is being viewed as being one who lives at the facility… another aspect of institutionalization. If I had been a parent bringing my son to her office, my son would not have been compared to the other children at the intermediate nursing and sub-acute facilities she was visiting that day. His diagnosis and treatment would be viewed differently, I believe, and this troubles me along with all the other aspects of having my son live outside my home in a facility.

My son has seizures at least every couple of days at home, and the facility has not witnessed any seizures in the entire month he has lived there. Unless a magic mind fairy came down and anointed my son with special seizure stopping abilities, he is having seizures that are either not being recognized or not seen by the facility staff. I don’t know how to feel about this knowledge. It’s good they are not seeing any bad seizure problems. It’s the most deplorable thing that the staff is not comforting my son as he has an uncomfortable seizure which usually occurs around the sleep cycle.

My identity is evolving, and I know this because I feel different when I see disabled children out with their families. “That used to be me,” I think. Now I’m the mother of a child that lives in a children’s facility who can’t quite come to terms with it yet. I hate it, but my son is doing alright. I am trying to make it work, but I am not sure if it is. I am sad but remain hopeful. That’s the best that I can do.

Problem Solved?

2011-09-11T12:28:00.000-07:00

As I now attack the rest of my life that does not deal with my 12-year-old son Chris, my best friend said that having Chris living at the children's facility solved my problem on how to survive that part of my life. Well, I understand the comment, which is partially true, but it is an impossible situation and will remain an insolvable problem forever. I don't like it, and I never will, but it is mostly working.

For the first time since Chris moved to the facility, I brought him home for an entire day. I had been fearful of doing this on an emotional level. How would I feel bringing him back? Well, Chris slept all day. I mean he literally slept seven out of the nine hours I had him home. I believe he needed some respite from the routine and noise of the facility, and I will begin to bring him home more. This is tough on many levels. The poor kid is doing well but obviously needs some down time from a relentless schedule due to institutionalization. Bummer...

Earlier this week, the facility had an outing. They took four kids and four adults (what the bus holds) to a local amusement park. I was not invited and my son did not need my permission to go. The staff at the facility have become his surrogate family, and they are going to pretty great lengths to make my son happy. But, oh, how hard it is to think of my son with a surrogate family! I'm pleased he's being treated well, but his care is largely out of my control. What kind of parent am I? I know I am not that kind of parent, but what does this make me?

Is the problem solved? No, but with typical children, new problems are always replacing resolved problems. Why would this be any different? There will never ever be a good solution to how to care for our disabled children. Every choice is hard. Every outcome has its good and bad components. And my son is doing alright, maybe even pretty well. We'll keep trying because that's all we can really do.

Today, it is intolerable

2011-09-03T10:04:00.000-07:00

My 12-year-old started school this week. All I can write is there is one teacher and two aides for ten kids in wheelchairs. I will have much support with me at the IEP as many, and I mean many, regulations/laws are being ignored and broken. There is an inexeperienced teacher and it is a new school. Eight out of the ten students live where my son does at the children's facility. I don't know yet if they don't know what is appropriate and legal or if they are over-looking the needs of the children. They are at the high school even though many, like my son, are middle school aged.

I am not screaming because I need to make this work. What I am doing is arming myself with documented knowledge of the legal requirements and bring professionals to back up the facts.

I'm writing this post on my cell phone as I sit outside with my son at the facility. We walked around for about a half an hour and are now by a fountain in a courtyard. You see, the students in my son's class only get to be taken outside the classroom in shifts due to lack of staff. Three lucky kids each day go outside for a recess kind of walk, so my son gets to go outside every third or fourth school day.

I am sad, distraught, and strategizing. And I'm not going to cry.. no, I'm not! Ah, damn.

Sharper than any twoedged sword

2011-08-26T16:24:00.000-07:00

For the word of God is quick, and powerful, and sharper than any twoedged sword, piercing even to the dividing asunder of soul and spirit, and of the joints and marrow, and is a discerner of the thoughts and intents of the heart. - Hebrews 4:12 King James Bible

Yesterday afternoon I visited my son at the children's facility. He truly seemed happy to see me. His face lit up and he laughed and smiled. Oh, joy! My boy loves me!

I laid on the area rug next to him and held him. We played a little with his toys, and he rolled over and fell asleep as I rubbed his back. I put a blanket over him and went to leave when the blond nurse who resembles me quite a bit spoke to me.

He really missed you this morning, she said. I could tell because he kept reaching for me and tracking me around the room. He made Mmmmmm noises when I hugged him.

My chest felt the pain of an invisible sword. This is the evidence I get that my son loves me... that he is looking for a substitute me or maybe an image he thinks is me.

Earlier in the day, I visited the elderly woman I am responsible for. She doesn't know who I am, and she was really sick yesterday. She is under hospice care and needed morphine for the first time for pain. It didn't matter that she didn't know my name or remember me. She had tears in her eyes from the pain and lifted her arms to me so I would hold her just as my son reaches out for me. Here I found love, too, from a woman that can't remember me but needed to be held. It's evidence that I am still important to her simply for being there, but none the less evidence.

I felt needed and special for being able to comfort those that need it most. I felt absolutely horrible that I had to get up and leave the ones that needed me. Ouch. Ouch. Ouch. And yet my soul is soothed by their smiles.

Wishing

2011-08-21T06:52:00.000-07:00

Yesterday was Saturday, and other than waking very early like I did when my son lived at home, it felt like a good day. I had seen my son at the children's facility the day before, and he is doing well. All was good, and I went to the movies on a Saturday night for the first time in a very long time.

Waiting for the film "The Help" to begin, I was thinking about how different the crowd was on a Saturday night from the usual kid movie I had gone to with my son in his wheelchair or the empty matinee performance I had grown used to. It was packed in the theater. I smiled a bit and settled in. All was well until this movie trailer played:

The Odd Life of Timothy Green

It' s a Disney film, and a couple who can't have a baby write down everything they want their child to be and bury the pieces in a box in the yard. Magic rains down (literally) and a boy appears that matches their descriptions.

I started to tear up and then cry. I silently cried until I had to find the tissues in my purse, and I don't even know why. Oh, if Disney could just magically come and make my son a little more normal. If he could simply understand just to lie there so I could change his diaper without struggling. If he could simply not fight the Hoyer lift so I could move him around. If he could just sleep through the night.

I know my son is fine at the facility, but the guilt is still really tough. I think it will be for quite some time. I also miss holding my son which brought him and me great joy... perhaps the most joy I've ever experienced.

Every now and then I'll hear young, new parents say, "If only he could stay a baby longer." Be careful what you wish for. Then again, Disney has a better outlook on wishing.

The time of my life

2011-08-19T21:13:00.000-07:00

My son has been at the children's facility for a week, and he looked very good today. I met the facility physical therapist, and I liked her. I told her Chris looked happy and that he seemed to be just fine.

"He seems to be his usual self other than having on someone else's socks," I said.

"At least they match," she said. "The kids in the other building [sub-acute care] often don't."

Chris is settling in, and I found out that his most important doctors are specialists he has seen in the past and I would pick myself. It was a good visit, and I am becoming more comfortable with him being there. I still miss him. I am still tearing up as I write this. But it's working so far and working better than I thought it would.

So, it's time to live my life and allow my identity to evolve. Someday soon I will meet someone who will ask me how many kids I have, how old they are, and where they go to school. I'll feel compelled to tell him or her that my youngest son lives in a children's facility, and I have yet to come to grips with that.

Paul Van Dyk - Time of our life

Does it matter?

2011-08-15T10:42:00.000-07:00

Today is Chris’ fourth day at the children’s facility. Honestly, I am not doing so well, but Chris is doing just fine. He looked really good yesterday when I visited him.

This morning I received an email from the administrator saying that she’s not sure if Chris’ full size bed can be used long-term because of it’s size. It may be too big due to regulations as the rooms are not large and are shared. Chris has known no other bed for years and it was really difficult affording the bed he is in now. Does it matter?

The one day I did not see Chris at the facility, he was dressed in his swim trunks and a T-shirt that did not match. I imagine the nurse aide dressing him thought the trunks were cute, which they are, but he did not go swimming and his shirt and trunks did not match. Does it matter?

The extension tubing was left attached to Chris’ Mic-Key button, and I know people who have children who do not move much that do this. Chris crawls, moves around a lot with some good strength, and could, and maybe would, accidentally pull the button out or irritate the stoma. Does it matter?

Many years ago, a very wise friend told me that I should, first and foremost, worry about my child’s needs before worrying about policy with other children. Where does worrying about my child’s singular, unique needs end now? This is what I need to come to terms with now that my child does not live with me. I am not doing as well as I would like with this idea.

My son is now being fed five times a day instead of four and his medications are being given at different times than I gave them. The caloric intake is the same, but the formula being used is different. Does it matter?

I told the staff I didn’t want the extension tubing left attached between feedings, and the nurse said she would comply. But there are a lot of nurses and aides there. I didn’t say anything about the swim trunks. How do you choose what matters?

If Chris has to move into a new bed, he will get used to it. This is what I think about because I know he will get used to anything that is done to him both good and bad. Does it matter?

To me, it all matters very very much. To Chris, I just don’t know yet.

Getting used to the inevitable

2011-08-14T08:24:00.000-07:00

My son has been at the children's facility for two nights and three days. I am going to visit him today, and the nurse I've talked to each day has told me he is fine. It sounds like he may be better than fine.

My son is unusual. He can move around quite a bit but does not know his name and cannot understand any commands. He is not happy sitting in his wheelchair for too long and likes to crawl around on the floor. The facility asked me to bring a big area rug for him to play on and crawl around on with his toys. Yesterday, I called the nurse's station and his nurse told me he was on his area rug with another boy that can move some, too, that's the same age as my son. I was speechless. What a great start to this journey!

I am overwhelmingly emotional about all this. I am still waking up during the night as I haven't slept normally in 12 years. I've been going for walks, hikes really, which is something I couldn't do with my son in his wheelchair.

Dropping my son off went smoothly once I gave up my responsibility and didn't fight it. My son is not receiving the very personalized care he received from me. He is "institutionalized" for lack of a better description. But I don't think he cares. My older son kept pointing that out to me the first day. My older children are impressed with the facility and think it is a great place for their brother. They love him and I trust their opinions.

Time will tell and I remain hopeful. But I miss my son waking up in the morning and reaching for me.

Tomorrow's Move-In Day

2011-08-11T20:08:00.000-07:00

Tomorrow's the big moving day for my son. He's moving from our home into a children's intermediate nursing facility, and that means that tonight is his last night at home for a while.

His things are all tagged with his name and packed. I've told him about it, but I don't think he understands.

I'm shaking a bit. I'm beyond crying. That's not true, I'm just not letting myself cry. I'm introspective. My family is supportive as all think this is the right time to see if this will work.

School has started here in my son's new school district, and he should be able to attend by next Wednesday.

I remain hopeful. Is there really any other way I can be? Yes, I'm scared beyond belief. Shhh.... don't tell anyone.

It's Going to be Okay

2011-08-06T14:49:00.000-07:00

After spending over two hours at the children's facility, I know my son will be okay there. The lady in charge wanted to see my son again before placing him there, and what she wanted to see was how my son moved around and how he was when I wasn't around. She wanted a feel for how he was going to be when I dropped him off. She was lovely. The nurse aide being assigned to care for my son most of the time is a long-term employee who will be very good. My fears were quelled.

Alright, there is some definite strangeness at the facility. Nothing too strange, but the parents have decorated the rooms for their kids. It's two kids to a room, and I was bewildered at some of the things the parents have done. There are a few kids there that were born healthy and became disabled for different reasons. One boy is a near drowning. One girl contracted an infection. One teenage girl was hit by a car. Many of these kids' parents have put up collages of pictures of the kids before they were disabled. That was just bizarre to me.

The nurse aide asked me what "character" my son liked. My face was blank. My oldest child had a Lion King bedroom theme a million years ago, but my family is not big on collecting or Disney stuff. Apparently, I am supposed to decorate my son's half of the room. I don't know what to do. Maybe some family pictures or is that weird? My son's 12. He likes Sponge Bob, I think, on TV but I don't want to decorate his room with Sponge Bob. He's 12!

We did go buy a small flat screen TV to mount on the wall over his bed. All the kids have these, and it's a good idea! Why didn't I think of this before? We got a wall mount that allows the TV to swivel to where he is in the bed. Okay, it's kind of hospital-like, but he's going to live in a facility.

My son will be fine. It's a nice place. The staff is good.

So, I'm told, let's do an early admit on Monday. I say Great! Then I get a phone call and emails on Friday that there's a glitch due to my son's private insurance. The insurance company is supposed to pay for the first 100 days of long-term care, and they need to approve or deny this. Either way is fine and Medi-Cal kicks in after, but the insurance company has five days to decide.

The admin lady tells me I should call the insurance company on Monday and tell them I am the one pushing for this placement because it's so hard for me to care for him at home and get him to his doctor appointments. She was big on me telling them that I can't get him to his doctor appointments. It's going to be a hard call for me to make. It's more of an emotional toll to care for my son than a physical one. But I'll do it. She's right that I need to do this.

We're getting ready now. We're getting some new clothes and thinking about what to put on the wall. I haven't talked to my son about it. I don't think he'll understand, but I will start to talk about it with him, to him. He's taking his own bed, and I know it will be okay in a couple of months.

His new home is a small building on a medical campus, but just outside the door is a lovely, shaded courtyard with benches and a fountain. It's like a small park, and it's calming. A grandmother sat on a bench and rolled her grandson back and forth in his wheelchair. I believe the grandmother was in greater need of the visit than the extremely disabled grandson, but who knows? I'll be asking myself that question very soon when I visit my son. And that's okay. It really is.

Delayed!

2011-08-03T17:57:00.001-07:00

Here it is the middle of the first week of August, and I thought my son would be packed up and moved into the children's facility. But the placement coordinator had not started the paperwork, and she did not check my son's eligibility yet. She met my son and me when she agreed my son could have the next open spot, but she wants to see him again to make sure they have everything they need to start caring for him. Tomorrow I will take my son out to the facility so she can "see" him again.

The coordinator knew I was waiting by the phone for her call that the spot was open, but then she sends me an email saying that she's just started his paperwork, so, hopefully, my son can come next week. Next week!

Am I being tested? Is this a sign to run as fast as I can away from this idea of placing my son there? No. It's just life. I'm looking for excuses not to have my son live there, yet I've been doing nothing but wait for two months for him to go there.

I still don't want my son to live away from me, but I feel I must try it out for the sake of my other children and even myself. Perhaps I'll feel better tomorrow as more of my worries are quelled. Perhaps I'll feel worse after I discover new worries.

Secretly, I hope my son won't qualify to live there, but I know he will. He's really very severely disabled. Sometimes I forget just how bad he is, but there's always people to remind me! There's always a medical need to see to. There's always a diaper to change, and I exhale deeply as I ponder if I really need to use the tragically time-consuming manual lift, which I do, in deed, need to use.

Suffering for Sanity

2011-07-29T10:13:00.000-07:00

Good friends and family have counseled me at length about my son’s future. All of them close to me have suggested I try the children’s facility out for my son. Nothing’s set in stone. I’ll never know if I don’t try.

What I am doing now isn’t working. My son requires the help of two people, so even with a home health nurse/aide I still need to be present much of the time. My son is large and can move well, but he is uncooperative. It’s like moving around a 5 foot, 80 pound baby that doesn’t want his diaper changed or to be in a sling or on a lift. He doesn’t understand any commands and he means no ill intent, but he’s difficult and almost impossible for one person.

If the facility cannot give a level of care that meets my son’s requirements for well-being, then I will re-think the situation and see what I can come up with. There are always options, and the problem is none of them are ideal.

I am coming to grips with the idea of how much of my dislike for moving my 12-year-old outside my home is purely my own problems of sadness, guilt, and a fear of the worst case scenarios of abuse. My son may, in fact, like the facility. He will probably like his new school as he does his current one. I still don’t want to place my son at the facility, but when all the information is sifted through, it makes the most sense. When the emotional aspect is looked at, it’s an unknown. It depends on the affections of the staff and the routine and who knows what else?

He has been my life for 12 plus years to the neglect of many others. I thought it was what was needed for both him and me. But it’s a different game now. He’s stable and huge. He’s not getting any better… ever. When I drop him off, I’ll be tempted to medicate heavily (vodka martinis at local bar), but I won’t because I’ll be waiting for the phone calls with questions about my son’s uniqueness that the staff doesn’t know what to do about. I’ll calm down and observe. I’ll learn and react.

We must all have open minds about what is best for our families. We cannot expect people to be more than they are. We must, simply, survive as best we can, and try not to break more healthy relationships and ties to save the broken dreams we cannot fix. At least I can tell myself this today, but next week I may be knee deep in empty Grey Goose bottles. Well, maybe a couple will clink together in the recycle bin.

If the video doesn't seem to work, here's the link to Don Mclean's "Vincent" http://www.youtube.com/watch?v=dipFMJckZOM

It's coming next week

2011-07-25T09:17:00.000-07:00

I don’t know if I can do it. I’ve written, passionately, about finding an adequate out-of-home placement for my severely disabled son and my choice to have him live there. But as I sit here writing a couple of feet from where he is playing on the floor, I don’t want to. I don’t want him to live away from me, and I am the only one in my life that feels this way.

My father and step-mother live about three hours away in Las Vegas, and I thought I had a great idea to take my older children and my disabled son to visit their only remaining grandparents before my son went to live in the children’s facility. My argument for going, it’s the last time they will see my son as they never come visit us and my son will probably not leave the facility much.

Two hours later, I started crying. That was Saturday night and I almost have the crying under control this Monday morning. Almost, but not quite.

It seems I am the only one that truly believes my son’s life matters simply because of his existence. I am the only person he seems even remotely attached to, though it is with little evidence I make such a claim.

The bottom line is that I don’t want to lose control of my son’s life. I want him to be near me so I can love him when no one else will. Can weekend visits be enough?

I am trying to think about what is best for my son. His physical needs such as bathing, diaper changing, feeding, and medication will be done on a tighter schedule. The facility can meet these needs better than I can, certainly, and the most important need of constant supervision will be seen to. My son needs to be monitored pretty much constantly for both seizures and because he gets himself into strange positions and gets stuck, such as in the corner of his safety bed.

I want a normal life, and I chose to arrange this placement for my son. But I don’t want to do it. My family tells me I need to. My heart tells me to tell them all to go f*** themselves and take my son to paradise. Unfortunately, I don’t know how to create a workable paradise.

A family member (through marriage) put up a post on Facebook I found totally obnoxious though others agreed with her. She wrote,

“thinking about the nearly 100 innocent victims in Norway and how their story has been overshadowed by a druggie who either OD'd or killed herself- seriously? which is the bigger tragedy?”

These demons I am facing right now, today, would surely drive me to partake of illicit drugs if they were available. I worry I’ll want such an escape to console my troubled soul after my son doesn’t live with me. How can people be so unfeeling of the individual in favor of the many?

No more Facebook for me. And I still don’t want to give my son up. And I have no idea how to deal with this. I’ve read other’s accounts. I’ve weighed the data. I know the arguments. I don’t want to do it. I don’t want to do it. I DON'T WANT TO DO IT!

Live the life you have imagined

2011-07-06T08:54:00.001-07:00

"Go confidently in the direction of your dreams. Live the life you have imagined."
- Henry David Thoreau

While waiting in line to pick-up medications from our local pharmacy, a woman in her fifties saw my son in his wheelchair as she walked by. She stopped and then backtracked to come over to us. I could see the indecision in her action as her stopping was really a pause, “Should I or shouldn’t I go over to the boy,” I could see her mind churning. I knew what was coming and felt not dread, certainly, but I did feel anxiousness knowing what was coming.

“Hello. Do you like sports?” she asked my son, bending down and trying to make eye contact.

My son did not make eye contact and even seemed to look away from her. She tried a couple more times to get his attention and said, “Do I make him nervous?”

In my mind I am thinking, this poor woman who went out of her way to show her caring nature and support is now stuck with how to remedy the lack of a connection with my son.

“I don’t know,” I said. “I wish I knew, but it’s very nice of you to talk to him.” I felt obligated to pat her on the back for her efforts and try and fix the interaction. She hurried off.

My mother once said, “You know, even the dog comes when you call his name, but he [my son] doesn’t even know his name.” I can’t remember the context of that statement, but I never forgot it.

My brother opened up to me once, quite honestly, for which I was very grateful. I had complained to him how my family had not been invited over to our cousin’s house for a party when everyone else had. He told me my grandmother said she had a hard time seeing me because she felt so sorry for me having to take care of my son. I appreciated his candor though I am still unsure about how to act around people with my son.

I didn’t choose this life. It is not a life I would have imagined living, and I am not sure how or if I can change it. When my son moves to a facility, my world will change completely. My son’s care-takers and school setting will change, but he doesn’t seem to mind who takes care of him. I imagine his transition will be easier than mine in some ways as I have to learn how to be the person who doesn’t take care of her disabled son constantly. I will no longer be that mother of the boy in the wheelchair who drives the special blue van. Well, at least not every moment of every day.

Friends slowly left my life as my son showed signs of being more disabled than anyone could have imagined. I was consumed with his care and diagnosis, and my friends said things like, “My problems are nothing compared to yours,” and my friendships slowly evaporated. I don’t know if it was mostly me or mostly them, and I am now wondering how I will make new friendships. No longer will I be the woman with the disabled son, but who will I be? Will the ordinary problems of people still feel as trivial to me as they once did? Will old friends be disappointed in my decision to not have my son live with me? Will we be able to relate to one another or will my new life be vastly different and trivial, too? I am not sure how to broach the subject and share how I am feeling.

It’s time to live the life I imagined. It will still be a life filled with the needs of my disabled son, but I am hoping it will be on a more manageable level. Hopefully, there will finally be energy for my family and to cultivate my interests and talents. I tried to be Super Mom, and I don’t know if it helped anyone as my disabled son is probably not much better off. I did everything I could for as long as I could, and I found out that this is as good as it gets. My son's abilities or disabilities will not improve and will only worsen.

I do feel a compulsion to live a remarkable life. If I am going to ask the government to fund the care of my son, then I must make the most of it. My decision to place him in a facility must have a worthwhile component to it or else why do it? My worry is that I am the best I can be while caring for my son, and now I have to prove that I can be even better. This idea excites me, scares me, and inspires me. I don’t know how to proceed yet, and I am full of ideas, but I wonder what I will be doing and who I will be in a year. I am hopeful that I will be working towards normal, and I dream of surpassing normal on my way to everything I can imagine.

California Dreaming

2011-06-30T08:47:00.000-07:00

After being in Massachusetts for a few months, I had the overwhelming feeling that I belonged there. It was a most significant revelation as I never felt that way before, and I grew up in a highly desirable beach community in southern California and never felt like I was at home. And now my soul mourns as I live in southern California having moved back to be closer to my family and to find more options for my disabled son.

Massachusetts and California are both good states to live in with disabled people, but there are a couple of huge differences. Massachusetts does not see a feeding tube as a medical issue and California says it is a reason for skilled nursing. Massachusetts does not have group homes for minors that are severely disabled except for a few sub-acute nursing home types of places, but they do have a few really fantastic residential schools for the severely disabled. They are fantastic! But, the school district of where you reside must pick-up the tab, so first you must get the school district to agree to this and then you may never physically move out of that school district. There are group homes once the child turns 22 and ages-out of the education system.

California does have group homes, and they are categorized by whether nursing is required or not. The catch is, it is the state’s view that all minors are better off living at home, so it is extremely hard to find information about the available options. Not only are there group homes, there are a few small children’s facilities left over from before the state deinstitutionalized. It took many phone calls and emails, but I found the options and visited them.

In California, the children living in group homes and facilities still attend the local public schools and are bused to and from the facility. Primarily, the homes are funded through Medi-Cal based funds, and 50-60% of the kids are placed by Children’s Protective Services (CPS), and the other half are kids of people like me who, anecdotally, hear from physicians and nurses that group homes and facilities exist but cannot get any information about them from the Regional Center workers who are supposed to be a bridge to needed services.

So, I talked to people. I talked and emailed with people who knew people who knew people, and then I made appointments. I saw a small 6-bed group home that was fantastic and had no openings, and I saw a 40-bed facility and a small group home I wouldn’t leave a dog at. I saw another 40-bed facility that was in the middle, and then I saw a 15-bed facility that I knew was the right choice for my child, and he is at the top of the waiting list. The opening should be this summer as a child that’s been there for years is aging-out when she turns 22.

My older, normal son was questioning my decision for out-of-home placement pretty hard. “Won’t he be sad not living with you?” he asked. It was a painful decision, and still is, but it is necessary. His care is more than I can handle physically and emotionally. I will retain all parental rights and make most choices regarding his care. I can visit him anytime I want to and can take him home whenever I want to. He’s heavy and uncooperative. He’s loud and fussy. He’s tube fed and medicated on a daunting, never-ending schedule that’s slowly killing me.

Am I being selfish? Shirking my responsibility? No. Unequivocally, no. I can no longer bathe my son without huge effort, and I can barely change his diapers anymore by myself. He needs two people for most physical care-taking because of his strength and uncooperativeness. His lack of normal sleep is reducing my longevity and making me not able to care for my other children.

It would be selfish of me to try and keep him home in my situation. It would be irresponsible not to try and use all avenues to help my family be successful with my son still a part of our lives but not living with us. Perhaps the test here is not how I will take care of him and integrate him into our lives on a daily basis, but more of how to manage him living in a facility (the best one!) that is there solely to meet his needs and the needs of kids like him.

I worry about the transition that is coming up. I worry that I will miss him too much or too little. I worry that I will worry too much. How will I handle the first miss-steps and bumbles the place is bound to make… inevitable transition pains?

And my soul is displaced. What are the ramifications of a misplaced soul? Wow, that’s a question better left not asked. Maybe it was misplaced at birth and knew when it made it to its home in the universe. Maybe I’m lucky that I know where it wants to be. Maybe that is enough. Maybe.

Indecision

2011-05-22T17:31:00.000-07:00

"Indecision is debilitating; it feeds upon itself; it is, one might almost say, habit-forming..." -H.A. Hopf

When faced with having to make a decision, people tell me it is better to make a bad decision and repair it than to make no decision at all. Can this be true all the time? If the force of the Tao is running through my life, I’m not picking up on it, and waiting for something to happen leaves me, simply, waiting.

“Ahh…” says my wisest friend, “arm yourself with knowledge and make an informed decision.” This sounds like a good idea, so I turn to some of the most renowned physicians in the country and ask them what they think of some of my son’s medical issues. They all told me, unequivocally, they don’t know.

Now, these issues are not the type you answer with, “if it ain’t broke, don’t fix it.” My son is broken, but the “fixes” for his “issues” may not help enough to make a difference. However, in the long run, taking some actions could help. I wrote “could” not would or should. “I don’t know,” each of the doctors said.

I’m afraid I’ve let these unknowns and indecisions permeate my entire life now. My world is one of “what if” to almost any idea, and I find I am now paralyzed to make any decisions. The experts cannot help me much unless I have clear cut goals for my child and for myself, but how do you set goals when all you have to go on is “I don’t know”?

Family and friends are wonderful saying that they support the decisions I make, so maybe simply making a decision would be best. To do or not to do… to hope too much or hope too little… to want too much or to want too little.

No wonder I keep looking at the clock wishing Celebrity Apprentice was about to start. But come eleven o’clock tonight, I’ll know who the next Apprentice will be, but I’ll turn of the TV and climb into bed telling myself, “I’ll make a decision tomorrow.” And tomorrow turns into next week, which becomes next month, and I am still waiting.

I Saw a Buddhist Monk

2011-04-21T19:23:00.000-07:00

I saw a Buddhist monk today, and I was envious of him. He doesn’t have to decide what to wear each morning, and his head is shaved. The greater public knows his probable beliefs and his probable employment. He has a rule book to live by, and I envy that.

I recently read about a family in California that is living with a rule of zero waste. I became a bit obsessed with reading about their lifestyle. Imagine the focus this mother has on her lifestyle and how wonderful it must be to see progress with your desired path. She needs to shop, cook, and live diligently and makes choices that affect the output of trash and the human footprint her family leaves on the earth.

My focus doesn’t come with a rule book and entails the life of the severely disabled. I’m far from alone in this focus, and the one rule we share as a group is that it is not by choice. Contrary to what the majority of the public thinks, there are no institutions that will readily take in my son, and he does not live at home by my choice. When he turns 18, there are alternatives.

After reading how terrible sugar is for people, and seeing the presentation Sugar: The Bitter Truth, I looked at my son’s enteral feeding formula and see that the third ingredient after water and corn maltodextrin is sugar (sucrose). It is a prescribed canned formula, and he does not eat through his mouth nor take in any other nutrition. Should I crusade for healthier medical options? I really don’t feel like it. But should I be?

Doctors try to be helpful in regard to my son’s health and well-being, but they can only make suggestions. To steal a line from the movie Charlie Bartlett, Charlie asks his psychiatrist, “You mean, if I take the medicine and it helps me concentrate, we’ll know I have ADD?”

“That’s the idea,” answers the psychiatrist.

I now see the genius of being a Buddhist monk.

Mild Excitement

2011-03-26T18:56:00.000-07:00

An emergency alarm sounded in our building this evening, and we were told to evacuate our floor, the eighth floor, using the stairs. We’ve lived here a mere four months, and this had not happened before. I called security to tell them my 12-year-old son is in a wheelchair. Security told me not to worry about it that the small fire had already been put out, and the fire department had reset the alarm. But the excitement brought to question my choice of living on the eighth floor of a twelve story building.

The New England town we reside in was established in the 1700s, and wheelchair accessibility is surprisingly bad in this upscale community. Apartments are hard to find that can accommodate a wheelchair, and I liked the view from the eighth floor. But now I know my next abode will be ground level. My son’s classroom is on the third floor of his school, and I find myself questioning the sanity of that decision, too. If a place, either a home or school, is to house a population of people in wheelchairs, shouldn’t it be the safest possible? Of course, had I been able to afford a roof-top apartment that would have been a whole different argument. But should it be?

Other mild excitements include the beginning of a new anti-seizure drug this evening. This new drug is not just new to my son, who has been on many drugs through the years, but this drug was just approved in 2007. We are hopeful for positive results and also have the plan of starting the ketogenic diet in about five weeks time. I am more than mildly excited… I am ecstatic that we are trying new ways of controlling seizures.

My life is still revolving nearly entirely around my twelve-year-old son, but at least we are trying to improve his life, which will also improve my life as his caretaker. BTW, I am taking him to a family performance of the symphony next week! More mild excitement than anyone could have guessed.

Universal Truths

2010-12-14T11:04:00.001-08:00

Recently, my son and I moved across the country from southern California to New England and valuable lessons soon followed. First, it is not all that difficult to fly with a wheelchair-bound eleven-year-old that requires a special car seat on a plane. Yes, they touched his diapered junk in a pat-down going through security, and they tested his chair for chemicals with a wipe. His canned formula was allowed in the carry-on (a full day’s worth), and security tested an unopened bottle of water and let me bring it, too. They did not question the medication-filled syringes (knockout drugs, just in case). The five-and-a-half-hour flight flew by with no remarkable problems other than me losing my favorite lipstick down the plane toilet, but that would have happened anyway, presumably.

Second lesson, cute, open-towed shoes are not wearable past October due to inclimate weather. Being December, I don’t know when I’ll be able to wear my favorite sandals again. March or April? As silly and immature as it sounds, delicious little sexy shoes always brighten my day.

Lastly, my disabled son is as much a rarity here as he was on the west coast. His thoughtful teacher and aides are just as inexperienced and puzzled with what to do with him as his old teachers were. What was I expecting? East coast enlightenment? Honestly, I thought a city harboring the best universities and hospitals in the world would somehow be different. It’s not.

Back in California, biologists noticed Cactus Wrens nesting in a power-line pole after wildfires destroyed their natural habitat of slow-growing cactus. Many manmade nests were erected in afflicted areas, and for the first couple of years the birds showed no interest, but now wren chicks are flourishing in one. The biologist interviewed for the article said, “If the wren becomes locally extinct, we wouldn't have cactus wrens to enjoy. It would just leave us a little more impoverished." The cactus wren living in that area is important enough to spend money and invest time and energy into ensuring its existence continues, so such thoughtful care should be equally important for a boy like mine, right? Would we be “a little more impoverished” without his population in the mix?

I’ve grappled with the idea of society’s responsibility for the treatment, care, and even acknowledgment of my son. The Cactus Wren was endangered by wildfires that were probably set by people as happens every season in California. But my severely disabled son, who is not diagnosed, may be genetically altered due to changes made by people in the environment. Toxins or too much sun or anything could have caused the problem. I don’t subscribe to this theory, but it is possible.

Here’s my question, and the answer may illuminate some of my dilemma: Why don’t we eat dogs? Obviously we must exclude some Asian peoples who do enjoy eating dog, and this gives us the knowledge that dogs must taste good enough to eat. If we can just figure out why we have taken a once wild animal and domesticated it for some work but mostly for companionship, then maybe, just maybe, we can start to understand the human psyche in regard to compassion. Is there another reason for society to care about, and be responsible for, my son other than compassion?

One Fine Summer Sunday

2010-08-01T14:42:00.000-07:00

Today I visited the elderly lady who I am not related to but am legally responsible for. Her "Alzheimer-like" dementia has left her unable to remember me and extremely bored. She no longer enjoys TV and cannot read nor play crossword puzzles. She is witty and engaging when she wants to be, but her words come out of a character developed over the years to mask her dementia. She remembers no one from her past or present and just little bits and pieces of experiences that made an impression.
I asked her if she remembered visiting Australia and holding a Koala bear. Her face smiled and warmed, and she replied, "I thought it was going to be soft and it wasn't." I remember her telling me that years ago. Encouraged, I tried to remember more such stories, and I asked her if she remembered the black cat on Halloween. This got another smile and some details added to it. My last attempts failed, but at least we were talking.

My disabled son was with us in his wheelchair, and the lady's dog who now belongs to me was there. I've adapted my visits to make me comfortable. I do not feed the dog any breakfast before we go, and I always try to arrive at 11:00AM. I give the elderly lady a bag of dog treats to feed Muffie, who is, of course, hungry and attentive to her previous owner. Between 11:45 and 12, an attendant comes in and takes the lady to lunch giving me the needed "out" without sadness ensuing and little disappointment. This is what works for me.

After our visit, we go outside. I let Muffie off her leash to run around in the open picnic area of the senior residence, and I tube feed my son his lunch in his wheelchair. This all went well today, as usual, but as I left for the drive home, I felt sad and overwhelmed. It dawned on me that my disabled son and the elderly lady are not so very different. One not knowing who I am or caring if I visit her, and the other recognizing me but in such a limited way that he does not seem to really care who takes care of him.

Sadly, I find myself talking to the dog more than either of my "people-charges."

I was told today that I am "quite a lady" for performing these duties and genuinely caring for and about my charges, but I find myself wondering if having my life revolve around my disabled son is necessary. I find myself wondering if he would be fine living in a residential care setting instead of with me. What if my time spent with him was more limited and then focused on his needs like my time with the elderly lady?

But my fear is, ultimately, would a routine evolve with my son as it did with the demented lady?

My life is full of impossible situations with no right, wrong, or even better choices. But this fact does not stop me from wondering about the choices I make and the ones I choose not to make.

Our Dreams

2010-05-01T18:37:00.000-07:00

How far do we go to fulfill our dreams? I write this waiting at the ER for my son to arrive from another hospital where he was taken by ambulance after breaking his leg. This is the second time my now 14 year old son has broken his leg practicing motocross racing. His dream? To be a supercross racer and he has been climbing the local amateur ranks of late, but this broken leg will end this... maybe forever. Do we let him keep racing after two bad leg breaks? Will he be too fearful to continue? Will he be more fearless overcoming a second break and push too hard and too far setting himself up for greater harm? shouldn't I be more worried about the surgery he faces when the transport team finally gets him here to the hospital with a trauma unit?

This is one fear my disabled son cannot cause, but is that a good or bad thing?

Today, while waiting at home to hear what the first ER said about my son's leg, I checked the mail and found the last law school rejection letter that I still had some hope left for. Law school is not in my future this fall. Do I end it there? I can retake the LSAT and apply early which would make a big differfence. Do I want to? How far do we go to realize our dreams? How many of us abandon our dreams, and how many of us should?

I am writing this post on my Droid cell phone because I am so sad at this very moment, I need to write. It's going to be a long night of a long weekend... of a long life. If you were 14, what would you do? I'm 42 and have no idea. Many will say, "Yeah, but at least you tried." Maybe trying and failing is not as bad as not trying, but it feels truly defeating. How do we not let our failures defeat us. And I ask this wearing my Don Quixote T-shirt bought on the day of my third rejection letter. How fitting that I have it on today.

Keeping Score

2010-04-15T21:58:00.000-07:00

As of today, I've received two rejections, one waitlist, and one "Decision Rendered" without a letter arriving yet. Out of nine law school applications, I have been rejected by the very lowest, waitlisted by a very low rated school, and rejected by a medium school. Honestly, it looks grim. Look up grim in the dictionary and you will see: 1. Kelly's LSAT score. 2. Kelly's chances of getting into law school.

"How much do I want it?" I wonder. The more I want it, the more it hurts. Is the idea of being told by law schools that they don't think I'm up to their standards (i.e. rejected) worse than the loss of not being able to study, and, ultimately, practice law?

Waiting... I can tell you this, waiting is not as bad as rejection.

Law School

2010-02-28T19:48:00.000-08:00

After sending in many law school applications, I am worried that I may not get into any of them, and I’m wholly disappointed in myself. My LSAT score is below average, and this means nearly everything when combined with my good but not great GPA. My English literature undergraduate degree from a mediocre university may or may not help me here as I tried to write admission essays that might help, but what if they don’t?

What does it mean to do well in most things but not on the LSAT? We could apply lawyer jokes here and chalk it up to my above average sense of right and decency, but really it means my logical reasoning is lacking. How else could I have survived my life? If I applied sound logical reasoning my disabled son would not be living with me and I certainly would not have a dog.

Does passion count? I guess I’ll find out. Does age matter? Am I just too old to take on law school in my forties? I felt tired taking the LSAT and found it the most difficult exam I’d ever taken. You are given five multiple choice answers to choose from and the exam study books all tell you that the questions are designed to trick you. It is not “choose the right answer” but “choose the best answer out of several right answers.” Could my resourcefulness and positive outlook hurt me here where I deal with the impossible and least desirable outcome consistently?

Never have I failed at something I truly wanted… other than getting my son diagnosed, but that could still happen and probably will at some point. Can I blame my Diet Coke addiction? No.

Today I found out that almost half the people that want to go to law school do not get into a law school. I am aware of all the “lesser” law schools, and I may very well be happy to get into one, but it is not what I want. It will be a long couple of months now until I have word, and I am ready to have a huge stack of rejection letters. But how do I reconcile the fact that I earned an abysmal score on the LSAT? It could have been worse? At least I apparently spelled my name correctly?

If there is a plan for everyone, then maybe I can apply the idea that I am meant to do something else. But I don’t really believe that. Things happen for a reason, and the reason I did poorly is because I don’t think in a logical fashion to that degree and because I did not study enough. You get what you give. It really is that simple, isn’t it? Maybe I’ll be okay. Maybe it will work out. Maybe we all need a “life check” from time to time.

I Can’t Believe I Still Have a Dog

2009-12-23T18:47:00.000-08:00

I live in an apartment in a nice area of a nice city behind the orange curtain in southern California, and today the apartment management called to discuss a problem with my dog. It seems there are some people that live behind me, in another development but nearby, who are self described “dog lovers,” and they’ve heard a dog crying and have looked and found it to be coming from my covered, enclosed, ground-floor patio. Oh no, the dog is not making too much noise, and no neighbors have complained, but the “dog lovers” are worried. Isn’t that special…

I have suffered through a hired dog trainer that seemed much more interested in showing how his dog massage works on me and on how my love life might explode by being submissive to a man just like my dog must be submissive to me, and I have groomed the dog, suffered concern over which food is the best and if the dog will be traumatized by being boarded over Thanksgiving. I have picked up endless piles of dog poop and sprayed enzyme formula on the pee spots on the carpet that happen less and less often but still happen.

Admittedly, I am still only marginally attached to my dog that I inherited, but I am a very good dog owner. Spayed, immunized, and licensed, my dog’s teeth are clean, and she is so cute small children break free from their mothers’ grasps to pet her. She is Barbie’s princess dog so appropriately named “Muffie.” And now, some one thinks poor little Muffie is suffering by being put out on the very safe and covered patio that houses her warm and cozy bed and toys and treats while I am not at home occasionally.

There is something wrong with the world. There is something wrong when my son (severely disabled is the term the world responds to) cries at 4AM every day and is often loud, but it is the dog crying occasionally that upsets someone who is not my neighbor and finds it necessary to call the management. Can any one out there in the universe explain this to me? Will I ever really love this dog? Must we endure trauma and expense (material as well as emotional) to love something? I remain cautiously optimistic that I will one day be happy that I have a dog. Or maybe not…

An update I didn't want to write

2009-11-30T08:44:00.000-08:00

I’ve dreaded writing this post. We’ve done all this testing recently, and so far, nothing has lead to even a direction of a diagnosis for my son. Sure, there’s been bumps away from paths like a pinball machine flipper spurring the ball along, but there’s no trail to follow as of yet.

The MRI came back abnormal but the doctor’s office is having a hard time getting the prior reports for comparison to see how much has changed or if there has been changes. It is not a “normal” picture of a brain, but there is more thinning issues rather than actual structural abnormalities. What does this mean? Well, it depends, of course. My son was not born with a normal amount of gray matter, so if he doesn’t have a lot, it’s not necessarily because he lost it but probably that his body never formed it and also never formed it properly.

And what does that mean? It’s probably metabolic. And what does that mean? Not as much as one would think as any genetic disorder has metabolic issues involved with it.

The good news is that my son looks to be stable and non-degenerative. Also, the specialist wants to keep going with investigating my son’s case. The bad news is that I am tired, presently, and feel the need to re-group in regards to my son’s disabilities. Actually, that’s not wholly honest of me. I am saddened and depressed that once again we are coming up with little real insight into the problem. The truth, I am sorely disappointed and terribly fearful that one day we will find the cause of this and there will be a treatment… the addition of an enzyme into the diet perhaps, and it will be far, far too late to help.

I fear that I will be sitting here typing the same response in ten years. I fear it more than any words could express.

One More Time

2009-11-08T21:07:00.000-08:00

“If you get up one more time than you fall you will make it through.”
-Chinese Proverb

This past week my son had all new basic tests run to look for a diagnosis of why he is severely disabled. He is almost eleven-years-old, and I have no idea why he cannot walk, talk, or function beyond a six-month-old child. A metabolic disorder is suspected, and a new metabolic specialist ordered all new blood and urine tests along with… wait for the astonishment… a new MRI with spectroscopy!

The initial metabolic screenings were done nine years ago and some before that, and the last MRI was at least seven years ago, so I am, once again, cautiously optimistic that an answer will be discovered. Yes, there are people that believe it is a waste of money to pursue expensive tests that may or may not yield any useful information, but I WANT TO KNOW WHAT’S WRONG WITH MY SON!

He didn’t cry when blood was drawn, and getting the urine sample proved relatively easy after exhausting the usual unsuccessful “bagging” and moving onto wrapping his diaper in Saran Wrap and filling it with cotton balls of which the urine could be squeezed out into a cup. The sample, I was assured, did not need to be perfectly sterile since a bacteria culture was not being done, and I was encouraged to try the cotton balls as opposed to catheterizing the poor boy.

How long will it take? Lab tests including send outs… Radiologist readings… and consultation of the metabolic team? I am afraid to think that I may have some solid results in a week or two. I am told that these tests are much improved from nine years ago, but I am still wary of the results no matter what they are. It’s an amazingly anxious state to be in that both thrills and horrifies me. I may be the newest member of some online group of a rare disorder, or I may be the parent that still feels somehow on the outside of reality having no answer to the question of why my beloved son is a puzzle that no doctor can put together having no diagnosis, no prognosis, and no discernible future. But is the last thought of not knowing better than hearing the very worst? I’ll let you know if it happens.

The Price We Pay

2009-10-10T21:04:00.000-07:00

Recently, I was involved in a discussion that both began and ended with the idea that whatever lifestyle you live, you pay a price for it. The context geared around working mothers, mostly, but soon expanded into all life paths, and the general conclusion was that you can’t have it all or do it all. I find this true in my life.

What price do we pay being parents to disabled children? Is what we gain, (new and unforeseen relationships and experiences), equal to what we lose (spontaneity, a typical child, a foreseeable future)? I like to believe it evens out, but there’s no way to know.

If we keep our children home with us, is the price we pay higher than if we gave up their care? I tend to think not as I couldn’t even take my new inherited dog to the animal shelter (actually, I did and then returned the next morning and got her back), so how could I ever allow my son to be taken care of by someone else? Surely, it would be more of a torment to give up the care of my son than to keep him with me though I, too, never sleep a sound night and fully realize that it must be cutting years off my life.

I used to dream from a very young age that one day I would retire onto a boat… a medium sized ketch. How many dreams do we give up? Are our new dreams adequate replacements? Do we begin to expect less? This post is full of questions and few answers. All I know is that the price is high. At such a high price, it must be a valuable life.

An Unexpected Heirloom

2009-10-03T09:27:00.000-07:00

I inherited a dog. It turned out that one of the Worldly Possessions of the elderly lady I am responsible for is a Cock-a-Poo (a rather dirty title), a half Cocker Spaniel, half Poodle. It’s not a particularly attractive mix, but the dog’s personality and size are pleasant.

I don’t need a dog and didn’t go looking for one, but she’s here now. She house-trained fairly easily but lacks manners. Mostly she follows me around waiting for any crumb of attention or food to fall her way. When she’s feeling exceptionally needy, she jumps into my lap unaware that she’s too large to be there. I welcome her with warmth as I am all too familiar with the desire to be close to someone that will rub the anxiety and loneliness away.

I don’t get it yet… why people have dogs as pets. It’s a chore and an expensive responsibility, and I’d not go out and buy a dog. But she’s here, and she’s mine. I don’t have the heart to change her name… Muffie. I have a dog named Muffie.

A Happy Soul

2009-09-20T10:07:00.001-07:00

The original post has been deleted. Some things cannot be revealed.

Lying on the grass...

2009-09-04T22:15:00.000-07:00

It was a lovely late afternoon in Orange County today, and my son and I took full advantage of it! He seemed a little bored sitting in his wheelchair as I read at a bench next to a duck pond with a fountain, so I thought maybe some time on the grass might intrigue him. He laid on his back and side and rubbed his bare arm back and forth across the grass.

He picked up a dried leaf and crunched it in both hands and went back to rubbing his arm across the grass. I teared up, just a little. It was such a normal moment on such a normal day with only the sounds of the fountain and the ducks nearby.

A Sweet Vision

2009-09-01T17:35:00.000-07:00

Maybe this vision is too sugary sweet, but something keeps me clinging to it like a small child wanting to live in the Disney version of Mowgli's jungle.

When I was a teenager, I watched a Sally Jessy Raphael show that featured guests who claimed to have lived through near-death experiences. One guest had been an atheist and converted to Catholicism, but most guests had an appreciation of spirituality and believed in a higher source and an afterlife.

One guest described going to a heaven-like place filled with souls that were waiting to go down to earth to occupy a body of their choosing. The guest made it sound like great thought went into the bodies and lives deliberately chosen as the soul could learn such varied and challenging lessons depending upon their choices as well as help the people they came into contact with once they were born.

Having a severely disabled son makes me think about this idea from time to time. When people think that I have a sad life or that my child's life may be sad, I like to think that maybe he chose to come be my son knowing he would be disabled. I like to think he thought he'd be greatly loved and learn to love while playing a most important role in the world as he touches lives constantly.

Yes, I am blond and naive, but it's a sweet thought that he chose me.

Manic Wednesday

2009-08-26T16:58:00.001-07:00

I’m tired of feeling responsible for my severely disabled son not having a diagnosis.

“If only I pushed harder for an answer.”
“If I took him to better specialists.”
If…
If what?

If Bill Gates had a child born like mine, would his son be diagnosed? Would he be cured? Fixed? Understood?

What does it take?
Luck?
Money?
Genius?

Lets not even not start with the “Why’s.”

A Reluctant Believer

2009-08-17T20:40:00.001-07:00

"I pray because I can't help myself. I pray because I'm helpless. I pray because the need flows out of me all the time- waking and sleeping. It doesn't change God- it changes me."
— C.S. Lewis

I think about God all the time. I talk with him (I like to view God as male,) and I wonder if that’s prayer. Most of the time, I’m not asking for anything, except maybe his attention, and I am undecided if a person like me deserves any time or if any single person is bothered with. But I can’t help talking to God. I can’t tell if he talks back and very much want to believe he does, but I worry that makes me arrogant to think that God would spend any time with my ridiculously unimportant musings. But I still talk to God.

Lately I’ve found I want to find a more formal way to learn about, and, surprising even to me, worship God. What does it mean to worship God and how in the world can one learn about him? My parents gave me no religion, or I should say my past has not supplied me a comfortable way to gather with people and worship or learn about God.

I’m terrible with languages. This worries me about my decision to seek a community to join because I am going to need much more than a King James Bible. I need deeper explanations and a tradition to back up the words.

I’ve been talking to God about this, but I’ve no answers yet. Maybe God communicates in dialogues rather than in questions and answers. Should I be looking for signs? Am I bombarded with signs and don’t know it?

I’ve liked to cling to the idea of reincarnation. I really like to believe that I thought this concept to be true when I was a very young child and remember when the word reincarnation was used so that I had a way of cataloging the idea and could talk about it later. I also like to believe things happen for divine reasons, but I have a harder time with this one. But I like to think it’s possible.

Years ago in a college history of religion class I asked the professor how one man could be responsible for the creation of Islam because I was surprised it all came from Muhammad. Then looking at Judaism, I realized it all started with one man also, Abraham, and Islam grew out of that tradition eventually. One man and his revelation of God. Is that crazy or not? I want to find out.

And I still talk to God…

Not Surprisingly

2009-04-03T22:14:00.000-07:00

Not surprisingly, today the result from the genetic lab was a negative/normal description of my own blood sample. I am not a carrier of a defective “X” chromosome, so I did not pass on my son’s genetic condition in that manner nor did I pass on this kind of problem to my daughters! I am, hugely, relieved. I’ve never been so happy about a test coming back negative!

My son’s pediatric neurologist, who’s rated in the top five, nationally, suggested I wait a couple of years before seeking further testing of my ten-year-old son to specifically look for the cause of his condition. His reasoning is that the testing is too expensive for such general testing and really is quite a dramatic and emotional process. He believes there will be better tests in the not too distant future and that we should wait for that day. Can I wait? Should I wait? Doesn’t my son deserve more than that? I can’t be sure.

We always want to know why. We have physicists looking for patterns in the universe and theologians seeking universal truths in religion and biologists trying to find out why our bodies age so we can live forever, and we seldom ask if any of these mysteries should be solved. Is it simple curiosity? Why do we seek the unknown as strongly as we do?

Whatever drives our human condition to an endless thirst for the understanding of everything, it still provokes my quest to have my son’s condition diagnosed. I know a diagnosis will not allow for the healing of my son nor change his care or treatment, and yet, I long to know why he is the way he is. It will not change him, and I wonder if knowing would change me. I am sure it would though probably not in the way I would predict.

It is human to wonder and human to want to understand. Maybe, maybe, it is human also to try and better our world and so to understand it to encourage the good, beautiful, and helpful and to filter out the harmful, evil, and inequities. Maybe that’s all I’m trying to do.

It's A New Day And A New Approach

2009-03-05T19:51:00.000-08:00

On Tuesday, March 10th, I will ship my own blood sample to a lab in South Carolina to take a look at how my individual cells turned off the extra X chromosome each holds. This usually happens randomly so that half the time the X from one parent is expressed, and the other half express the X from the other parent. But this pattern of randomness can be skewed if there is a problem with one of the X's from either parent. In this case, we will be looking to see if I am a carrier of a "bad X." So, what are the repercussions of such privileged knowledge?

If I am a carrier of a genetic disorder, two things will need to happen. My teenage daughters will receive the same test (and hopefully insurance will pick up the 350.00 tab), and my disabled son will be tested for a large variety of known X chromosome disorders under the presumption that his disease process is caused by this kind of disorder. Of course, the testing of him will not be covered by insurance.

If my daughters were to test positive as carriers, their reproductive lives will be a challenge. Any daughter would have a 50% chance of being a carrier, and any son would have a 50% chance of being afflicted with the disorder. In other words, it would be a 25% chance that they could have a son born with the disorder. I would desperately hope that they would take every measure possible to ensure that they have children not afflicted and not carrying the bad X. But I could not control their actions.

If my son tests positive, then my quest for a diagnosis would end, but I suppose that ending would lead to other quests in regard to his care. At ten years old, and functioning as a six month old, his learning will never truly matter to any noticeable extent, but his lovely personality and presence will be guarded from harm and discomfort. His happiness is my only goal for him. Isn't it funny that we say that about our normal children, too?

A New Strategy

2008-11-12T11:50:00.000-08:00

Exactly five-and-a-half months after my son’s geneticist strongly suspected and suggested my son be tested for ATR-X syndrome, the research scientist in Oxford, England emailed me the result yesterday morning. And it’s another negative result. NEGATIVE.

Tears brimmed up and over as my hope for an answer for why my son is so disabled was crushed, and, rationally, I knew that this would be the probable outcome, but I still was struck numb and shaken for several hours. I would have cried with either outcome, and I thanked all involved with the complexities and costs of getting this testing done as I would have done with either result.

So, the quest is still on. The quest for the ultimate answer of where my son’s development went horribly wrong is now once again facing me like a huge cement wall with no way under, over, around, or through. How does one get to the other side? My creativity is already beginning to flow as I outline my next attempt to get to the other side. A different path altogether will be next starting with having me tested to see if I have an inactivated X-chromosome which would point in a definite direction of testing as well as rule out whether my daughters might be carriers of an X-chromosome related disorder.

This quest of mine differs from scaling a mountain simply because it’s there, and it is not a personal journey of growth so much as I feel I am in a race to find the answer before my teenage daughters want to begin families and before my son is no longer here. It took five-and-a-half months to get the answer from this test. How much time do I have?

Today, the day after the result, I am occasionally teary but have gained strength from the knowledge of ruling out this syndrome and being able to move onto the next path. The waiting is over, and, after all, that is the hardest part.

On Discrimination

2008-11-05T17:39:00.000-08:00

Yesterday in California, A proposition was passed with a 52% majority that amends the state’s constitution defining marriage as a union between one man and one woman thus overruling the State Supreme Court’s ruling that same sex marriage must be legally allowed according to the constitution. What is so unusual about this outcome is that the proposition passed because record numbers of African Americans and Latinos made it to the polls to vote for Obama, and it is estimated that 7 out of 10 of these individuals voted yes on the proposition because of their conservative Christian beliefs. On a local public radio show, I heard one gay man liken it to losing his rights for being born into a minority and having other minorities now tell him he has to ride in the back of the bus.

Several people have voiced their opinions that maybe marriage should be done away with altogether and only civil unions should remain to truly take religion out of the picture. I am one that is also shocked by this outcome and why it came about. Obama came out publicly against a similar national proposition, but this made no difference. Senator Biden also opposed it. People vote for many reasons, and I am left wondering about many minority voters that supposedly supported the Obama ticket for change and progress but then voted for such a regressive proposition.

What does Obama winning the presidential election mean? Will it make any difference in race relations in our country? Should it? The rest of the world has been cheering that Obama won the election, and news reports have been showing African-American people telling their stories of how they never thought a black man could be president in their lifetimes. We got to see the Reverend Jesse Jackson cry on TV as he waited to see Obama make his victory speech, and Oprah Winfrey devote her day-after-the-election show to similar stories and celebration of Obama’s victory. It is strikingly clear that this is a historic day for African Americans, but will it change race relations? Could it make racism grow? My own feelings are a bit negative this evening towards these minority voters not embracing fairness. A proposition that would make it mandatory for a teen girl to have parental notification of her intent to get an abortion did not pass, which makes me question why a religious stance could outlaw gay marriage but allow abortions to be more accessible.

One woman made the point that many gays are racist and would never dream of coupling with another of a different race. This also made me wonder; is it possible that gay people are more racist than non-gay people despite living with a minority status and a heavily discriminated against life? I doubt this could be true, but I have no evidence. Why are we, as a nation, ready for a black president and not ready for gay marriage?

74 million dollars was spent by both sides on the proposition 8 campaign making it the most expensive campaign this year outside of the presidential campaigns. This amazes me from both a cost standpoint and because I thought this was a fairly cut and dry issue. I thought it was only fair to allow the California Supreme Court’s ruling to stand. Even without the ruling, I do not understand the problem with gay marriage. I am, this evening, puzzled and questioning my core set of beliefs and how they could differ from over half the people that voted yesterday. And most excruciatingly painful is my racist feelings for the minorities that made this final decision against another minority. I know this is dangerous and hurtful territory and that I must quickly replace these ideas with a bigger fairness for all, but it is tough to do tonight.

The Grasshopper

2008-10-08T16:50:00.001-07:00

Within my small garden there are obvious signs of my lack of a green thumb. Nearly dead plants reside next to flourishing varieties, and a growing green grasshopper thrives amongst the fronds of one hardy plant. I have watched this grasshopper grow for months and witnessed its minor damage, and each day I water the garden, I look for it. I shall be sad the day it cannot be found. I ponder about my nature that hopes with continued watering and fertilizing that a new shoot will present on the withered plants and that enjoys the grasshopper more than its host plant.

I used to believe I loved gardens for their beauty but now know the affirmation of life felt amongst the foliage brings me peace. Looking at a tree gives me the same feeling of calm and strength. My attitude does not help my gaining a green thumb but must hinder it. There are rules to beauty that lie in mathematics with spatial relationships most vital. Chemistry must be handled next with proper nutrients and soil conditions necessary for optimum health. Not surprisingly, my lack of attention to the science of my garden leaves me learning through trial and error and mystifies me when plants thrive and disappoints me upon their early demise.

My garden’s therapeutic qualities come not from looking at the plants but experiencing their change. It would not be the same to see different grasshoppers in my garden each day, but the one that clings to my tallest plant entertains me. Just as a static life bores a person, a static décor must leave our minds craving stimulation. Beauty alone cannot meet these standards. It’s too bad I’ve no room for a koi pond with a turtle or two.

Worldly Possessions

2008-08-24T22:46:00.000-07:00

Today I cleaned out an assisted living apartment of a 92-year-old family friend that I am now responsible for since she no longer can care for herself and must move into a dementia unit at a different senior residence. This is following a broken and replaced hip that has left her in a convalescent facility for the past couple of weeks. What I found has left me a little sad and very self-reflective.

I found many boxes filled with unfinished and yet to be started projects of all craft varieties. Material pinned to patterns and cut out and ready to be sewn was in abundance. It was evidence of a life lived in frugality both with the saving of every scrap and the inexpensive hobbies. It was a life lived with the making of all of one’s clothing.

There was a box filled with small boxes of slides that no one will ever see. I am curious what the slides would show, but this lady never married and had no children, so I am not sure what the subjects would be. Her only family had long since passed away and there were just a few with her mother being an immigrant that came to America alone and her father dying when she was an infant. The snapshots found in the box were mostly of pets long since dead.

Folded tissue and napkins were tucked away everywhere telling of her senility. Papers of all sorts were stacked about with no rhyme or reason. The apartment was strikingly grimy for a place that is supposed to have weekly housecleaning, but then she would demand they not touch her things.

I found toiletries that were decades old! Gross!

The experience left me thinking about what we save and why and what our possessions tell about us. Did this lady ever find joy in those slides to make the taking and storing of them worthwhile? Did she ever look at them? Is it sad that there is no one to pass them onto to cherish her?

When my mother passed away, she left little of value. Most of her money was spent on travel and entertainment, quite wisely in my opinion, and I am in possession of many photo albums jammed with pictures of people and places that I care very little about and that my children will care even less for. Upon my demise, I am pretty sure the photo albums will be thrown out or maybe put in one of their attics out of some bit of love or respect, but they will not be looked at. I shall make no photo albums and put all images on a storage device. It makes me wonder if all those people involved with “scrapbooking” will have their works thrown out in a generation or two.

Should our possessions matter to anyone other than ourselves? If Grandma’s stash of sex toys is found, will she be thought of any differently? What if Grandpa’s diary is found filled with poetry written for someone other than Grandma? What if a family member that scrimped along in life never spending a dime and living the dullest of existences is found to have a large sum of money upon his or her death? Would your opinion change of the person or the way the life was lived?

Upon my death, I hope I have few worldly goods and that the possessions I have are filled with memories that speak volumes of who I was in a decent light. I hope I leave more with my action than with my non-action, meaning, I hope I have little time or need to fill my life with crafts or worrying about taping my soap opera (the 92 yr old had boxes of VHS tapes of her soaps), and I want my family to remember me as an active participant in their lives surviving through the good and bad together. I would like my descendents to fight over my belongings rather than fight over who has to haul it all to the dump.

Another Negative Result

2008-08-12T21:05:00.000-07:00

This afternoon my son’s geneticist’s office called to tell me that the test result I was anxiously waiting for had come in and was normal or negative. The email from the research institute read that 85% of boys afflicted with this syndrome test positive, but because of the 15% that do test negative, they will continue to look for the most commonly known genetic mutations involved with this syndrome. It will take 2-3 months for another result.

It was an unexpected result for me. I truly thought it might come back positive. Part of me is glad that my son may not have this syndrome, but what my son has is not good regardless of what it is. There is still the fear that my other children could be carriers of a bad genetic mutation and may only find out upon giving birth to an afflicted child.

The genetics nurse pointed out one very positive aspect to this testing… I did not have to pay for it. She’s right, but now it is another waiting game that puts any other testing on hold until the result is in. I am now leaning towards the belief that my son probably does not have this syndrome. And I’m almost OK with that. Maybe tomorrow I’ll be completely OK with it.

I feel naïve. Why would it ever be as easy as simply sending a blood sample to England and receiving an almost immediate answer? It has been an exciting week waiting for the result, and I am a little down-trodden with the news, but I am used to such experiences and have one more medical diagnosis ruled out. My son might have this syndrome, and in a couple of months I will receive yet another phone call followed by a report, and I will file it in the expanding cabinet that houses all the previous attempts of solving this puzzle. If my house were to be in danger of burning down, I would not take these files with me.

The Countdown Begins

2008-08-07T10:37:00.000-07:00

At 3:34AM today, or 11:34AM UK time, I received an email from the research staff that my son's blood samples had been successfully received by the lab in Oxford. The first leg of the testing should be completed in 2-3 days, and if a positive result is attained, then it will be known that my son has ATR-X syndrome. I could know in 2-3 days, including today presumably, if my son has this syndrome ending a nine-year hunt for a diagnosis.

Most boys with the syndrome (86%) test positive for the rare anemia that usually accompanies the syndrome posing no real health concern but acting as an easily detectable marker. Either way, testing will continue to first look for the easy-to-find genetic mutations which would point to my inheritance and subsequent passing along of the defect. Following a normal result, further testing would continue to look even further for the lesser known mutations.

I may know something very soon. It's funny that I feel like I need to prepare myself for the result. I was asked yesterday what I would do if I found out definitively that my son has the syndrome, and for years I thought I'd book a trip to Hawaii upon finding a diagnosis in a personal celebration, but now I find myself instead thinking of all the doctors along the way that I would like to inform of the positive result and the best way of doing that. Am I jinxing this outcome with such thoughts? Maybe, but does it really matter?

I am excited sitting on the edge of a mystery that I've actively pursued for nine years. If it is true that the journey is greater than the destination, I will be ever so slightly disappointed for the journey to end, but I will definitely be ready to start off in a new direction.

The Test

2008-08-04T21:20:00.000-07:00

Tomorrow, a sample of my son’s blood (two small test tubes worth) will fly FedEx to England to be tested for ATR-X syndrome. This will be done free of charge after a research institute contacted me upon finding out that my son was a candidate for this test.

I am excited but trying not to be overly hopeful that we may finally know what is wrong with my son. Writing that makes me want to back-up and say nothing is wrong with him other than he is not like the typical person, but that is a wrong in most people’s perception. What kind of parent would I be to agree with that?

If my son tests positive for this genetic abnormality, what will change? My two teenage daughters, and myself, will have to be tested to see if we are carriers with a near certainty that I would be, which makes my son’s condition entirely my fault… genetically speaking. It means an end to a long and laborious quest, and the outcome will not be glorious but will, none the less, be a reward. What shall I do when I get the results? I am sure I will be overcome either way. Will I rejoice or celebrate either way? Will the doctor say she is sorry with either outcome?

My belief is that if my son has the condition, a new beginning will show us promise as we will know more about my son and my family line will not need to see any more sons born with this condition. If my son does not have this syndrome, I will be again writing a similar blog entry the night before a similar test is to be done hoping that finally I will know, definitively, why my son is so very different from most of us.

Like I Love You

2008-07-28T23:16:00.000-07:00

She had not spoken for nearly a week, and she was trapped in a dying body consuming nothing but air and our weakened dispositions as we knew not how to be upbeat at her bedside. I suspected that she understood some of what was going on around her. I felt wounded when her brother came to visit and talked about her as if she was comatose and could not hear, and out of respect, or maybe fear, I said nothing to him that I felt she could hear us but could not respond. How was I to explain my intuition to him? How was I ever to tell the haunting story of my mother’s death?

In my mother’s case, cancer was the cruelest of foes tricking us into believing that with strength, courage, and faith in medicine, a person could be cured or at the very least live indefinitely with “maintenance” treatments. It was a long and ugly battle that taught us all what we were made of, but it was destined to be a losing battle from the start. She was in her early fifties when she was diagnosed with an advanced stage ovarian cancer, which was completely unexpected because at thirty she underwent a hysterectomy due to painful and troublesome fibroid growths, or at least that is the story I remember. Actually, staying with my grandmother while she was in the hospital is all I remember, and this was memorable because Halloween fell during my stay with her, and Halloween has always scared me without the prospect of my mother being in the hospital, but that is a whole different story.

Eight years after diagnosis, my mother was going to die soon, and she was going to die in hospice at my house. I am still not sure how that came about other than my stepfather was ill equipped to care for her at that point, and she did not want to be in a hospital. I asked her physician about hospice care, and one phone call set it all up, but it also meant she was going to die in my home under my care. Nothing can prepare a child to do this for his or her parent. It haunts me in so many ways and on so many levels, and the little satisfaction I have that she died loved and with as much dignity and power over her care as possible is far overshadowed with the memory of changing diapers and watching the deterioration up close with her belief that she would beat the illness and live.

Being a housewife and mother, I had the time and room to care for my mother, and I believe that was the biggest factor in allowing a hospice situation. Not wanting to underplay my compassion for my mother, I should add that I wanted to please her in any way I could, and not taking her back to the hospital was her choice though I believe she would have preferred to stay in bed alone and die rather that have a nurse’s aide and myself fussing over her constantly, and her slow death made this necessary.

The hardest parts were situations I could not have planned for or ever thought of. My mother’s husband of eleven years, her third husband, was doing the best he could but simply was not an adequate caregiver lacking a thoughtful disposition and a level of love and respect for my mother that exasperated him financially and emotionally. A few days before she died, her husband called me and excitedly told me that he had booked the local historic church for my mother’s memorial service that she had told us all she wanted done for her. My mother was not dead yet and my stepfather was planning her memorial service expecting a positive reply on my part as he dutifully fulfilled his wife’s final wishes, but there was a problem with his arrangements… she died a couple of weeks earlier than he anticipated making the service close to a month after her passing. People questioned me about the timing, among other questions regarding the service, and I simply told them I was not asked to help with those arrangements. Why I was not consulted I never asked about and barely wondered for I was numb and spent by that time.

The day before my mother died was a Saturday, and her two brothers and sister all came to pay their respect, and they were lovely. They had been estranged the year before because their mother, my grandmother, had died leaving them unequal shares in the family estate for some really whacko reasons. With the issue never resolved, they are still not speaking these four years later, but that Saturday the three of them sat around my mother’s bed lovingly paying their final respects. Where was my stepfather? He was on a harbor cruise luncheon with friends. Maybe he had good enough reasons for not coming to see her for a few days, and he had planned to come the next day, but he would not make it in time to see her alive.

I learned from the nurse and aide that there are imminent signs of death after a prolonged illness and degeneration such as cancer creates. My mother quickly progressed through these stages, and I barely remember what they were other than the not being able to move, not being able to talk, the cessation of food and then liquids, and then the blood sort of pooling on the back of her legs. It was awful. The aide told me it was going to be soon, and this was what she did everyday working for a hospice agency, and she was right.

The aide was a very upbeat lady nearing senior citizen status, and she expressed her surprise at my mother’s ability to hang on and fight.

“You have to tell her that it’s okay for her to move on,” she told me.
“Seriously,” I asked?
“Oh yes,” she said. “Sometimes people don’t want to let go if they are worried about loved ones. Do you mind if I tell her it’s okay?”
“No,” I said. “Whatever you think might be helpful.”

The next day the aide arrived for her usual forty-five minute visit, and she did tell my mother it was okay. Unfortunately, it did not go as I had foreseen it. The aide finished cleaning up my mother, her primary job as aide, and she held my mother’s hand and spoke reassuringly to her.

“My dear, I want you to know it’s alright to go,” the aide said. “Your daughter and son and all the grandchildren are just fine. They want you to be at peace. Your loved ones that have passed before you will be there waiting for you.”

“Wait!” I said. “Her family was not that nice. I don’t want to scare her and make her fight harder to stay.” The aide looked at me puzzled. My house was a loving and normal atmosphere but that differed greatly from where my mother had come from.

The aide never spoke to my mother like that again in my presence, but I did tell my mother one more time, a couple of days later, that she should leave whenever she wanted to. It was in the middle of the night, and I had not slept much in several days as I knew my mother could and would pass away at any time, also, I had the job of not just changing diapers and nightgowns and bedding, but I also had to administer pain medication which quickly went from Morphine liquid to Morphine patches. Her care consumed me, and I cried while holding her hand and telling her we would all be okay.

I had rightly guessed that my mother would pass on Sunday February 29th. Not only was it a leap year, but the Academy Awards were scheduled for that night, and a chilled bottle of champagne waited in the fridge from weeks earlier for my mother and I to drink as we enjoyed our annual pastime of watching the Oscar’s, and it seemed appropriate and destined that my mother would leave us on this poignant date. She was having difficulty breathing all night on Saturday, and as I had been warned, fluid was building up hampering her breath. I worriedly called the hospice nurse around six-forty-five in the morning describing my mother’s labored and fluid-filled breathing. The nurse said she would bring a suction machine over soon and that I should place the oxygen mask over her mouth and nose that we had not used yet since my mother had shaken her head when I had previously tried to. I did as the nurse directed and started the chain of events that led to my mother’s passing. It haunts me to describe the following.

I turned on the oxygen machine which is louder than I thought it would be, and I unwound the plastic tubing and looked at my mother whom I presumed was in a coma like state nearing her final time. The oxygen tubing was affixed to a mask, and I gingerly and with true concern tried to put the mask over my mother’s face, but to my surprise, with her eyes never opening, she shook her head, just a little, back and forth in protest, and as it seemed to me a choice to die as she somehow moved her head back further than it was by lifting her chin, and the fluid overtook her inhale, and she began to pass away. I quickly yelled for my husband that was in the next room.

“She’s going, she’s going right now,” I cried.

With each of us on one side of her, holding her hands, my mother died. It was over quickly. I felt, and still feel, awful for how that went down. How long was she aware of what was going on around her? Always? Was it a moment of clarity and strength? Would her ghost come to haunt me if it could? Would she feel sorry for me or be angry with me for going through this?

I unconsciously gasped with my eyes watering in a crushing moment of grief, but I regrouped quickly as calls needed to be made and certain responsibilities handled. I called my stepfather first to tell him that my mother had just passed away.

“I’m coming right now,” he said. “Don’t tell anyone.”

I had no idea what and the heck he meant by not telling anyone, and I immediately began to call people I needed to. First was the hospice nurse, and she came and called the mortuary. I called my brother, and we decided who we would each call that needed to know immediately, and my aunt very sweetly came over to be with me through the end.

My aunt arrived before my stepfather, and by then, maybe an hour and a half after she died, she already looked very different as if she were drying up and sinking in. I had cleaned up my mother, which I must write was a constant challenge as her body was so fluid filled from her illness, she went through diapers faster than anyone thought possible, and she was tall and heavy not from flesh but from fluid. Her legs had seeped from water retention, and getting fresh diapers on her was truly difficult. But I had changed the sheets, wiped down my mother, put on her favorite nightgown, which I briefly thought was a good gown to be cremated in if in fact the bodies get cremated while dressed, and I rubbed her favorite lotion over her arms and legs to disguise the inevitable odor. It was the best I could do.

Neither my aunt nor I could pull the sheet over my mother’s face, and though I tried to close her eyes, they kept opening, which was a little disturbing as they had been closed for days. Upon his arrival, my stepfather rather quickly pulled the sheet over her face, and I hated him for that. Somehow, I found it disrespectful of him. I hated that he had any control over her even after she was gone. Shocking my sensibilities, my stepfather relayed the warped picture in his mind of the situation and, unfortunately, crushed my hurting soul.

“Can you believe out of all the people that heard the news of your mother passing, only my daughter cried,” he asked?

He proceeded to tell me that it must have been tough coming downstairs this morning and finding my mother gone. I really can’t remember what I replied intuitively knowing the truth would never matter to this man. He would never completely grasp what occurred, and I instantly bonded with my mother, posthumously.

I once accidently poisoned my daughter’s pet cat, and the family had to cancel a planned vacation to pay for the saving of this cat. Afterwards, I cared very deeply about the care and treatment of this pet cat because I had a huge investment in the animal. Going through the horror that was my mother’s last weeks gave me a deep investment in my memories of my mother. No one loved her the way I did. No one ever had to.

Choosing Not To Choose

2008-07-08T08:57:00.000-07:00

If for each pregnancy you knew you had a 25% chance of conceiving a severely disabled child, a 25% chance of conceiving a child that is a carrier of a disability and a 50% chance of conceiving a normal child, would you take the risk? Most people choose not to, but some parents do with the intent of continuing the pregnancy regardless of prenatal testing results. Today I received an email from a mailing list from one such wife and mother of a severely disabled son asking for prayers as they find out the sex of their baby soon. Are they stupid? Irresponsible? Faithful that god will bring them whatever they need? Will some call them courageous?

I find it disturbing, but I do not know these people. Not knowing what their family life is, I can draw no conclusions as to why they would opt to go down this thorny path when truer paths are available. Why did they not conceive selectively? Is it too expensive or does it take god out of their child’s creation? Why bother to do any prenatal testing if they are going to continue the pregnancy regardless of what tests find? I guess I want to know why? WHY?

Innately desiring offspring drove me to an early marriage and a large family at a young age, but when information is supplied to you about your genetic make-up, why not view is as a gift and pursue a child or pregnancy that would help to put an end to a disastrous genetic syndrome?

Diversity makes people better, and thanks to spontaneous genetic mutations, we will forever see genetic diversity of the best and worst kinds in our populations and societies. Never would I not allow these parents the choice to conceive as they choose, but I could never encourage it. Freedom and diversity can never make up for the battles a severely disabled child must face which include both physical and emotional pain. WHY?

Are these parents courageous? Part of me strongly wishes that having a severely disabled child was not such a burden or such a huge part of my life to where I would be willing to take such a risk. Part of me recognizes that this family must have a healthy and loving component to it to gamble with this issue. But why take the risk? It is not necessary with today’s medical knowledge. Why not take the courage they possess and direct it towards a path that does not include the possibility of passing this same concern down to a daughter? Even a child without the known defect could have a different devastating problem, but a child with it, is doomed. I cannot believe it is courageous to risk such a chance.

My first reaction to the news was shock. Surprise and incredulity followed along with some disgust. Finally, I am sad. I am sad that regardless of medical advances, this family chose not to guarantee a child free from a certain painful existence. If this family has an afflicted son or a carrier daughter, will it fuel arguments to limit people’s personal freedoms? Will it give rise to questions regarding medical insurance coverage? Will these people be shunned by many that were once there, or are there now, supporting them as they raise a son that will most likely die before they do? And if their prayers are answered and they produce a healthy defect free child, will that encourage another throw of the dice? On thinking of all these consequences of their choice, I do not know if I am glad or disappointed that I do not know these people.

Why I Can't Get Enough of M. Knight Shyamalan

2008-06-16T15:56:00.000-07:00

Last night I eagerly tried to get everyone in the household to go with me to see Shyamalan's new film "The Happening," but only my daughter showed any interest and it was purely just to get out of the house as the new film was getting blasted by critics and drowned by viewers like me that just want a good time. Shyamalan's last two films, "The Village" and "Lady in the Water" were not good, and this newest film was supposedly worse. So why do I eagerly await his latest release and go on opening weekend? I still don't know. He has not been able to capture the allure of his first film, "The Sixth Sense" nor the box office of "Signs." I also much mention my favorite of his movies, "Unbreakable," but I do like Bruce Willis, so that helped.

It has become a tradition to go see if the film is really as bad as they say it is, and then we wonder why he is paid to keep making movies. The Happening took in over 30 million dollars this weekend, and that's not so bad, but it's not so good either. How does Shyamalan get the funding to keep making these movies he writes and produces and directs? At least he did not act in this one.

The tabloid websites like to write that Shyamalan is full of ego and will not listen to anyone, and I kind of hope that's true because there's something about his awful movies that makes me keep coming back and shelling out the dough to not be impressed. For one thing, his movies get talked about. One feels a bit left out not seeing them. Maybe it can be likened to bad news traveling faster than good or how traffic slows on the opposite side of the highway to view an accident - one just can't help themselves.

How he gets the big stars in his films, I do not know. Maybe the money or the prestige of being in a Shyamalan film - I don't know. Poor Mark Wahlberg had the worst lines and a really bad role in this latest film, and I can't believe he took the role, but maybe it was about money or Shymalan. Zooey Deschanel was her usual wonderful quirky self and made the movie better for her being in it. She is one that you can't stop looking at. I think she could stand in front of the camera and simply breathe and be entertaining.

I shall sum up my regard for Mr. Shyamalan's work in this way: he takes the story to an unbelievable dreamlike place that is really kind of amusing. Artistic license is demanded and given just as if you were on an amusement park ride exhibiting robotic dinosaurs to scare and awe you. It's fun. It's fake. It's different. I am anxiously awaiting his next!

Harriet McBryde Johnson 1957 - 2008

2008-06-08T21:48:00.000-07:00

I first saw Harriet McBryde Johnson on BookTV as she was interviewed about her writing. Immediately, I ordered her book and read some of her articles on line. She had a muscular dystrophy – one of Jerry’s kids that grew up and resented the Jerry Lewis Telethon for portraying people with muscular dystrophy as never able to grow up and certainly not able to live normal, full lives. She took to the streets with signs every year to protest the telethon.

She was an attorney in Charleston, and she touched me significantly. Sitting in a wheelchair with an extremely crooked spine, her presence was great and her words full of wisdom. She saw the disabled as a much needed diversity to human culture and advocated, eloquently, for the rights of all. She explained that her condition made her who she was and that without having it, her life would not have gone in the direction it did to help so many others and touch the lives of so many that needed her encouragement and insight.

I am greatly saddened, and I shall never forget her.

http://www.charleston.net/news/2008/jun/05/harriet_mcbryde_johnson_dies43458/

Schuyler's Monster: A Father's Journey With His Wordless Daughter by Robert Rummel-Hudson

2008-06-05T14:48:00.000-07:00

I must point out that Schuyler (pronounced Skylar) is the author’s daughter, and the monster is the inherited genetic syndrome that Schuyler was born with. This monster has left her unable to talk along with other manifestations like difficulty with fine motor skills and other subtle but problematic difficulties. Having explained that, the book chronicles the author’s journey from meeting his wife, to conception, birth, discovering a problem, searching for an answer, and finding the best way to overcome, or just live with, the problems. The author is candid, witty, and amusing. It’s a good story.

Having a disabled child myself, I enjoyed it for obvious reasons such as: Hey! they have the same problems I have, and, Hey! they survived; maybe they are even flourishing. But I wonder how people without a disabled child in the family or involved somehow in their lives respond to the story. Do they know how unusual this father is? Do they know that most people would never go to the lengths, or find the resources, that this father found? The flip side of this is: why isn’t my husband like that? Why hasn’t my husband loved our disabled child as this author loves his daughter? Unfortunately, our son is not affectionate with his father which is hard to get around.

Just this morning, a kindly friend, though not a good friend, asked me if the rest of my family resented the time, energy, and care I give to my disabled son. I told her I don’t care if they do because I resent them in their able bodies and minds for not stepping up to the plate and taking on more of the everyday household responsibilities to help out. Why blame my disabled son for a crazy household? Why should there ever have to be a choice?

Parents of disabled children that cannot speak must advocate for them. It is a tough job, and when I question whether or not my disabled son (I have to keep calling him my disabled son here because I have a neuro-typical son, too) should be in a program, or have this therapy or this medication, or this test, I have to speak for my son. I am absolutely positive that I have made mistakes, and I am sure I will in the future, but I must always think of him first in the terms of what he would want and what would be best for him. Never will I question what is best for the rest of us because I cannot. It comes downs to one’s personality and intuitive make-up, and many people have voiced their disappointment with me.

Schuyler’s Monster has a happy ending. Well, as good as it gets, and I find it close to fairly tell happy from my perspective. I am a bit jealous as the author experienced the great sadness, but he has also had victories over his daughter’s monster. Maybe that’s a bad way to put it, but the book makes me hopeful when there is no hope. What more could I ever ask for?

http://www.schuylersmonster.com/
http://www.schuylersmonsterblog.com/

The Holland Story

2008-06-01T23:37:00.000-07:00

In the thought provoking, and very readable, memoir Before and After Zachariah, Fern Kupfer tells the story of her life having a severely disabled child and how it irreversibly changed everything. She wrote something along the line of not wanting to be known first and foremost as the mother of a disabled child, and as I write this I am thinking about how most of my blog posts lately have dealt only with the issue of being the parent of a disabled child. I contacted Fern Kupfer a couple of years ago, and she was still being asked to speak about the experience years after her son had passed away, and even though she has written several novels since the memoir, she is still best known for it. She is still best known for being, and writing about being, the mother of a disabled child. So what hope do I have for escape?

Schuyler’s Monster by Robert Rummel-Hudson, another memoir written by a father of a special needs daughter, is even more readable and makes me think that he might be in the same boat of being best remembered for being the father of a child born different. I came upon a chapter entitled “The Holland Thing,” and I laughed because I knew exactly where he was going with it. There is a story that gets passed along by good-wishers to parents of newly found to be not normal kids. Rummel-Hudson writes that it was started by a Sesame Street writer and goes something like having a special needs child is compared to taking a trip to Italy but the plane is forced to land in Holland, and even though you are really sad about not being in Italy, you discover all the beauty Holland has to offer. Well, I heard it was France, not Italy and that maybe Erma Bombeck wrote it, but it does not matter. The point is, it is ridiculously stupid and does not make one feel, as Rummel-Hudson wisely explains, ready to accept that life as you thought it was going to be is over and that your child is messed up for life. Having a disabled child is more like landing in Paris only it is pouring down rain, and the rain never stops so life must be flexible to deal with the ugly skies and the constancy of never knowing what obstacle the rain may cause today, and the beauty of the city is always slightly veiled.

At a mother’s support group I went to once, and maybe if the ladies were drinking wine and not iced teas at the restaurant I would have tried it again, one lady asked me why my son was not attending the special education classes at our local, or home, school. I told her he was too messed up and had to attend where the special day class was. The mother in charge, a very sad mother trying to keep it together, told me that I should not say too messed up but that I should say too severe. I told her, regretfully in retrospect, that I thought I was being more correct by saying too messed up because I usually say he’s too fucked-up. The group never contacted me again, although I still believe I would have made a good drinking buddy to those that seemed to need it.

I am in good company in being best known for having a disabled, or a special needs, or a messed up child with Fern Kupfer, and Robert Rummel-Hudson, and the father in Massachusetts fighting with the school district for his disabled daughter to be treated with dignity(http://www.leavemychildbehind.com/) and so many others… Lorenzo Odone’s father, Augusto Odone, and we will see what happens to the Governor of Alaska that has a new baby with Down Syndrome. It’s not Holland, but we are all in a similar place with similar experiences that tend to come in a similar order. We mourn the loss, or death, of our perfect children, and then we move on at different paces, but most of us end up at the same destination. Holland? I don’t think so.

Chasing A Diagnosis ...and an Update

2008-05-26T23:11:00.000-07:00

My son has a genetics appointment tomorrow, and I am thinking of little else this evening. Many have weighed in on how much effort should be given to finding a diagnosis for the cause of my son’s severe disabilities. People are continuously amazed upon hearing that no one has determined why my nine-year-old son is so neurologically handicapped, and new physicians are amazed to see the huge amount of reports from the exhaustive testing done on my son.

Tomorrow, the geneticist and I will discuss the findings of the latest tests administered, which are relatively new tests with one that looks for the wrong amount of chromosomes… either a deletion or addition of genetic material. The results were normal, and the next test looks to see if the DNA is in the wrong order in certain spots to help identify certain known genetic disorders. Our health insurance has denied paying for the test the geneticist has recommended, and it costs thousands of dollars. Do we pay for the test to be done or not?

The health insurance company denied the claim for a couple of standard reasons that basically state that genetic testing of this type is not covered after infancy and because the outcome of the test will not change treatment. Tomorrow, I will get the name of the lab that offers the test, along with the exact name of the test, so I can get a detailed list of which genetic markers will be looked for to suggest which disorders are involved. It is a complicated science. A genetic defect can cause different outcomes in different individuals, and sometimes genetic variances are found and no one knows if a disorder arises from it. The point is to find out if any of the disorders tested for are treatable. My son cannot be healed because the myelin sheath material (white matter) that covers brain cells to allow impulses to travel normally is mostly absent and cannot be grown, but what if his condition could be treated so that he does not get any worse? My son may or may not have a neurodegenerative condition, but he has seen periods of regression and very little progression back to where he was previously. My question is: does the slowing or cessation of a degenerative disease count as treatment? I think it does, but it will not make him better.

Some family members do not understand why I want to know the cause of my son’s condition. “If it cannot be fixed, then what difference does it make,” they ask? My standard reply of knowing in case one of our other kids could be a carrier of a “bad” gene usually quiets their argument, but I want to know what caused my son’s disabilities because he and I deserve to know what happened to him. The quest to understand my son dominates my life, and I believe a diagnosis would really help to explain how his systems work and maybe what to expect in the future. The chance to gain information from the treatment and therapies of similarly diagnosed children could prove invaluable. Mostly, I want to know what happened. When, how, what, and why my son is severely disabled are not unreasonable requests. Also, if my son were to be diagnosed, his data could be added to the body of research of others with the same condition helping to further the study of the disorder.

But the pesky problem of who should pay for the genetic testing comes up again and again. One family member went so far as to tell me that he believed his insurance costs were higher because people like me insist on having expensive tests done that fail to yield any real helpful information. Is he right? Is his point valid? If I choose to pay for the test myself, what happens to the next family that the test is recommended for but cannot afford it? Do I challenge the insurance company, or start a fund to help others pay for testing, or do I just worry about my own child and let the rest go? Can I afford the test?

This evening of contemplation offers an example of the best and worst times of having a disabled child. My curiosity is piqued, my emotions are high, and my mind reaches further and further to understand myself, my son, and society. This, too, will bring out the very best in me, my son, his doctors, and every staff member of every office this issue will come to. Challenges, both physical and intellectual, are what make us grow and refine us. That is, if they do not kill us.

Genetics Appointment Update:

It was a surprising appointment with the geneticist suggesting a new test altogether for my son. A rare inherited genetic disorder now tops the list of suspected syndromes for my son, and it is where we will begin next looking for an answer. Today marked the first time that I found myself hoping that we will get a normal, or negative, result back because it is an ugly disorder that is still too newly recognized to offer any kind of good prognosis information. If my son has this syndrome, then my other children must be tested to see if they are carriers of it. This prospect was always present but not thought of much when my children were still young.

It must be said that my son is good looking with deep blue eyes framed by luscious long eyelashes and a fair complexion. It turns out that his cute, uplifted little nose is probably a dysmorphic feature. My son looks more abnormal every year, and even every few months as he grows. A positive result would predict that his looks would become even further abnormal. I think of this knowing we have no result, and I am embarrassed and angry with myself for thinking about all the repercussions of a positive result when it is clearly unknown and not even likely that the test will be positive. I read one statistic that said approximately 25% of people tested do test positive. That’s low! Why do I jump the gun with my morose mind? Preparing for the worst?

Part of me wonders if I fear this test when I have never feared a test before because maybe this one is it. Maybe my son will lose his mystique and become another statistic, or victim, of an ugly unchangeable outcome that becomes real and finalized with a dreadful diagnosis. What will I occupy my mind with once my son is diagnosed? Will I constantly refer to the documentation of similar children for my own expectations of my son? Does everything change or nothing?

One important note I must add, the first recommended test will cost $2,000.00 with a low likelihood of insurance coverage. The second test is $4,000.00.

Educating the Ineducable

2008-05-11T19:22:00.000-07:00

My son is a third grader but functions much like a six-month-old child, and he is legally obligated to be enrolled in school, and the public school district is legally obligated to educate him. But my problem, or the school’s problem, is that my son is never going to function any better than he is right now, so how do you educate the ineducable? Why do we educate him?

Not so long ago, my son would not have survived to be in school, and he is not alone. More and more children are surviving devastatingly severe disabilities with the help of better medications, better medical equipment and all types of intelligent support. So then what?

Safety tops the school’s list of priorities followed by progress. How do we measure progress in an individual that does not make any? We start by making goals. Once a year we have a meeting where we compile an Individualized Education Plan (IEP). Every three years, it is a more detailed “Triennial IEP” that includes a psycho-educational assessment along with all the usual teachers, therapists, administrators, and if you are lucky, a cheerleader or two to keep your spirit up as you fight for what you think your child needs or doesn’t need. The intent of the meeting is to set goals for your child and to decide what services your child will need to meet those goals. But what do you do when everyone around the table has run out of ideas for new goals because the old goals could not be met and had to be discarded?

My son has not met the goal of paying attention to the teacher consistently for twenty second periods. A goal of touching a button on command three out of five times was abandoned. Once a goal was determined to be undoable, we tried to take the goal down to the lowest level possible. My idea of a goal being to maintain current skill level was said to not be a real goal as progress is supposed to be made. So what now?

Why do we go through this routine every year? This is all fresh in my mind as our school district is currently out of compliance with my son’s IEP. It is frustrating because I have to ensure the district complies with services and instructions in the IEP. Of course, safety, feeding and medication schedules are critical needs for my son, and these instructions are never put off or ignored but when it gets down to teaching my son, there seems to always be a delay in an assessment or in attaining equipment someone deems necessary for my son’s success.

There is only one reason that I accept all of this frustration that is put upon me, my son, his teacher and aides, and really quite a large number of people, and that reason is because most disabled children will benefit from this system of assessment, goal setting, and follow-up. The system makes the teacher and those involved be creative and accountable for their time and their skill with the children in the classroom. There are children that will learn to read, count, and write with great effort made by the children, teachers, and therapists guided by choices laid out in the IEP. Having to be extra observant and critical with my son to try and find his strengths and build upon them will inevitably make these people better able to help children not as impaired as mine. But does the system help my son?

Riding the short bus and being at school stimulates my son, and I believe it helps him to be comfortable outside of his familiar area at home. I could list off many ways my son’s visibility at the school and in the community helps society in general, but taking just my son into consideration, other than the stimulation, his being at school really just helps me stay sane as he’s safely cared for, and not at home, for six hours a day during the school year. Every IEP meeting holds a shimmer of hope that some new idea might come forward to help my son progress, and I have not given up hope that my son may improve some day in some area, but I have learned to love him, adore him, exactly as he is, and if he ever learns to push a button which may allow him to communicate some thing to us, then I will be the first to make him practice and push him forward.

We educate the ineducable because it is nearly impossible to gage who may be silent just waiting for the right therapist to suggest the right technique to make a communication breakthrough. We educate the ineducable because we have decided all children are equal in the right to the best possible education. Perhaps my son and I are put through much more than we have to be, but it is the best system we have right now, and my greatest responsibility is to keep my son as healthy emotionally and physically as possible. With this system, I have the final word on what happens to my son while he is not in my care, and I have ensured that every possible avenue has been assessed for his growth. We all grow from the experience, and that can’t be a bad thing.

The House of Mirth

2008-04-30T21:31:00.000-07:00

The House of Mirth by Edith Wharton

Ecclesiastes 7:4: The heart of the wise is in the house of mourning; but the heart of fools is in the house of mirth.

It took me some time to get through Edith Wharton’s classic tragedy, and I spent too much time pondering possible motivations that Wharton may have witnessed to create such wonderfully flawed and perfectly human characters. Having read Ethan Frome and The Age of Innocence, I have looked up the usual particulars on Edith Wharton as I tend to do with most authors I read. I view the literature more purely if I am not yet too familiar with the author, but my mind continually went back to Wharton’s real life as I slowly crept through the story. How many socialites did Wharton see climb to prominence, and how many did she witness fall by the side? Did Wharton herself partake in any social climbing or gate-keeping with the power to make or break a person’s social standing?

I have always been troubled by the question of whether art should be judged on its own merit or if it should be considered in the context of the artist’s life. I was first touched by this idea when I was a young school girl and happened to see a film of Jackson Pollack creating a painting. Had I not watched the man with his strange gait walk along the flat canvas dropping paint from his brush, I never would be able to appreciate his work. I remember his expression, how he moved, and even what he was wearing. I had the same thought, or rather disillusionment, the first time I saw an interview with my favorite band in high school, and they could barely hold a rational conversation, and my view of their music changed for the worse.

I have been puzzled by people’s reactions to memoirists when they find out that the story was embellished or even completely made up because the story should stand on its own, but people like true stories and value them far more than fiction even though it is the same lessons and realizations and entertainments that we receive. I am guilty of bringing in the delicately small slice of Edith Wharton’s history that I know of. It enhanced my delight in the novel but distracted me far too often removing me from the flow one gets into when engrossed in a good story. Knowing this, I still research the authors I intend to read because I like to believe I gain a little bit of insight into the story even though I am aware that my interpretation of the author could be completely off based on an erroneous biographical excerpt. I’ll continue to take my chances. I can’t help myself.

A Broken Dream?

2008-04-27T22:45:00.000-07:00

My twelve-year-old son broke his leg four weeks ago while riding his dirt bike on a motocross track that he had ridden on several times. He was wearing a couple of thousand dollars worth of the best riding gear including the newest Leatt neck brace, but this did not prevent him from hitting a jump wildly with the bike flying sideways and my son landing on his right leg causing a compound fracture complete with the bones breaking through his skin inviting infection in the middle of the dirt track. Surgery, pins, casting and crutches followed along with one inevitable question directed at me, the boy’s mother: am I going to allow him to keep riding motocross?

Many have weighed in on the subject with mostly positive opinions that my son should get back on his motorcycle as soon as he is healed, but other mothers have voiced their concerns and questioned my sensibility in allowing him to ride and race at the level he has grown into. It is a sport with inevitable injury. Everybody knows this. I know this. Expensive, high-tech gear may or may not help but does need to be replaced after a bad crash threatens its integrity, and we have replaced two helmets in the last few months. It is a dangerous and expensive sport, and it is my son’s passion to ride and race. Would an ideal mother encourage her son to race or deny him the opportunity?

The current total medical cost has reached $37,000.00 with more to come from further x-rays, cast removal, and office visits to the surgeon. Our health insurance has covered it. My son’s three day hospital stay and care at home has been exhausting and is reaching the truly annoying stage as we are all tired of his limitations and boredom, and this should end in two weeks if no complications arise. Right now, with the knowledge of how terrible it is to break a bone fresh in my mind, I have a hard time wanting my son to get back on that motorcycle. In the hospital, just prior to surgery at ten o’clock on a Saturday night on a gurney in an almost silent, starkly cold and antiseptic surgery ward, my son said to me, “Isn’t it funny that the first bone I break is my leg?” I feel so very strange that my son expects to break bones in his future due to motocross racing, and I am not sure if I want him to be fearful or not. I do not know if I want him to worry about the cost and inconvenience that this broken leg has incurred, and I know why.

Above all else, I love my son enough to want his dream to be realized. He wants to race supercross. At twelve years of age, he does not need to worry about whether or not his family can handle the stress of a possible injury nor does he need to end his dream because his mother worries that the next crash could cause irreversible damage or devastation. He needs only to refine his talent and skill and work hard to accomplish his goals. I wish his dream followed a less dangerous path, but I am amazed at his strength and courage, and I see the positive effects it has had in all areas of his life giving him confidence and an optimistic outlook. I just wish I could gain the same effect from his pursuit. I will always be proud of him, and I will never stop worrying.

Be CAUSE we care

2008-04-16T18:56:00.000-07:00

Today I listened to KPCC’s Larry Mantle interview Alexandra Harney, author of “The China Price: The True Cost of Chinese Competitive Advantage,” and as compelling of a speaker as she was, and as impassioned as she sounded, I wondered, “Do I need to worry about where the goods I purchase are made?” She was realistic in her view that people were probably not going to boycott cheap clothing and other items, but she made her point that hopefully people will begin to ask the stores where the items were made and become better informed on the problems and dangers associated with cheap manufacturing. Consumers face the prospect of inferior manufacturing and even toxicity from substituted, cheaper ingredients in products as some companies operate slyly avoiding government controls.

I agree that this is horrible, horrible, most horrible for you and me and the low paid, poorly treated workers, but I am not sure my senses can handle one more “cause.” We our bombarded with warnings of our carbon footprints, plastic containers poisoning us, the weakening dollar, surgeons removing the wrong organs, and how bad corn syrup is for us, but it is in everything tasty. Just this afternoon, I spied a mini-van in the high school parking lot pasted with over-sized bumper stickers exclaiming “My pet is saving lives because she’s spayed,” and “If you don’t eat animals you call pets, Why do you eat animals you call dinner?” But it occurred to me that the cat on the picture of that bumper sticker is a true carnivore and would not survive without meat unless maybe it had added nutrients to substitute the protein, but that’s not likely. My son’s pet snake eats rodents, and even my daughter’s pet tarantula eats crickets, so my pets eat animals. My dogs’ food is carbohydrate based but contains meat product, and the Fancy Feast canned food my cats’ cry for is meat based. If my pets get to eat meat, why can’t I?

Do we pick and choose which causes mean the most to us to support? What system do we use to prioritize the importance of all these causes? Do we worry about the planet over personal ethical choices? Do we not eat meat because it is better for the planet or because it is ethically wrong to eat animals? Both? Do we buy organic or local if we can’t get local organic?

Our world has become so high stress, and as a parent, I weigh my actions and non-actions daily in regard to what I am teaching my children. I cringe at all my children have to worry about, and I wonder if I should add “The True Cost of Chinese Competitive Advantage” to the list of things to be considered before buying, eating, or using any thing. Maybe we’ll get to it after we finish earthquake proofing our California home as the newest scare, I mean study, that the BIG ONE is coming just came out this week. I remember well the first piece of advice a nutrition doctor gave to the TV audience on a popular talk show: "All food has some nutritional value, so first and foremost, don't stress about what you are eating because stress is worse than your food choices." I was both comforted and mortified at the same time. And I still am.

A Life Decoded

2008-04-01T14:36:00.000-07:00

A Life Decoded, My Genome: My Life by J. Craig Venter was an unusual read, but Dr. Venter is an unusual person both gifted and determined beyond belief. His private venture to map the human genome beat the government funded team's effort. It was interesting to see the stories Dr. Venter chose to elaborate and those he chose to skim the surface of, and I was left wanting to read more of his sailing adventures and personal happenings than of his public and private battles in being the first to unveil the human genome to the world. He writes of his son quite a bit in the beginning of the book, and I have no idea what has now become of the adult son. But it is about the science, and Dr. Venter’s story involves a political world that few would have known about and a resourcefulness that propelled him to the forefront of his field.

Is Dr. Venter a genius? I believe what I like best about his story is that he is an exceptional person in his determination and in his resourcefulness. He optimized all opportunities and creatively pushed ahead. He must be a likable person or he could not have gotten people to back him in the ways he did. I like that Dr. Venter sees his life path as remarkable, and I would love to hear his explanation of why that is. I have read his story, and it left me with a greater curiosity of why this man is the way he is when the whole point of mapping your own genome is to gain awareness of exactly how your DNA makes you who you are. Dr. Venter points out several times that our DNA does not guarantee exactly how we turn out but that other environmental and hereditary factors influence us to a greater degree than previously thought. I suppose the explanation of why Craig Venter is who he is must be a combination of DNA and experiences and choices leading to ever greater experiences and choices. He has a magnificent sailboat that he managed to make into a floating lab of sorts that travels around the world, so he’s a definite genius in my eyes.

The fascinating part of this story is that this man is truly set apart. He was Time Magazine’s Person of the Year 2000. He was on track to be the first billionaire in the biotechnology field. He has developed a new field in genomics: environmental genomics on the wake of the climate change sciences. At sixty-years-old, he is still writing his story that will probably dwarf his current memoirs. He lives with passion and drive. But is Dr. Venter a realistic role model? Is he a genius? Is he a rock star? Is he simply a man that craves scientific breakthrough enough to find a way to accomplish anything? Maybe his next memoir, which I definitely expect out in ten to twenty years, will enlighten us further.

Power-ful

2008-03-19T22:35:00.000-07:00

Today I was lucky enough to catch Samantha Power promoting her new book “Chasing the Flame: Sergio Vieira de Mello and the Fight to Save the World” on 89.3 KPCC’s AirTalk with Larry Mantle. Before discussing the new book, Larry Mantle delved into what everybody is now associating Samantha Power with which are the quotes from an interview she gave to The Scotsman regarding the Barack Obama campaign to which she was a volunteer foreign policy advisor. The controversial remarks included her saying they, the campaign, fucked up in Ohio, and she called Hilary Clinton a monster. She resigned and apologized. She is a young hot female Harvard professor that won the Pulitzer Prize in 2003 for general non-fiction. You gotta love her.

I have no real interest in genocide, which is the topic Samantha Power used to be best known for, but Samantha Power absolutely fascinates me. She is a Harvard academic, and wears many shoes being a journalist, columnist, and author, and she is under forty. Of course, I Googled her, and I found that she has even played basketball with her friend George Clooney. I searched BookTV, which is CSPAN2 for nerds on the weekends that showcases non-fiction authors, and she is on this weekend! I am so excited. It kind of thrills me to see passionate accomplished people get in trouble for saying fuck and voicing their personal opinions.

I have been wondering why Ms. Power feels so strongly about genocide. What factor swept her to focus on foreign policy? As much as I am looking forward to seeing her interview, and I’m setting my DVR so I don’t miss it, I will not likely buy or read her book about the United Nations official, Sergio Vieira de Mello, who died in a suicide bomb attack in Iraq in 2003, but such overwhelmingly interesting voices like hers attract and even inspire me. To hear her today have to once again explain that she made a mistake for saying those things, she’s sorry, and that she hopes her work will not be looked upon differently was painful, but she was brave and brilliant. What message is she getting across to me? It does not involve genocide or foreign policy but a lesson of what people can do when they are impassioned. She inspires and excites and moves people with her passion. She’s my hero.

Life Value

2008-03-16T10:17:00.000-07:00

Recent news reports are bringing up old stories that trouble people, and those stories seem to generate more and more commentary and debate on uncomfortable and polarizing topics. Dr. Jack Kevorkian, the assisted-suicide doctor, is running for Congress, and the parents of a disabled nine-year-old named Ashley are back in the news one year after going public that their daughter was given treatment to keep her small of stature and childlike forever. Both of these stories touch at the bioethics of what medical doctors should and should not treat and how they do so. Both stories bring to light the lack of dignity in being ill or disabled and the possibility of misplaced good intentions.

Having a disabled nine-year-old puts me in the unusual place of knowing how difficult it is to care for and raise a person that will never walk, talk, or care for himself. Close family members were able to say, “Maybe it would be better if he did not live too long,” and I knew they were trying to be realistic, and I appreciated the recognition of how hard it is to live the way I do, but it hurt, deeply. The ideas of quality of life and burdens and sanctity of life became common considerations for me. I spend money on genetic testing, and our health insurance, along with the county and the state, pays much for my child's needs along with the school district that is obligated to try and educate my ineducable child. My child is expensive and requires around the clock care, and it cannot be determined if he understands much, and he will never improve. Does this affect his life value?

There are people that think it would be best to euthanize babies and even adults with severe irreversible disabilities. This became obvious when Terri Schiavo’s husband legally won the fight to remove food and water from his wife that would never recover from a vegetative state, and this troubled me greatly as the difference from Mrs. Schiavo’s condition and my own son’s was not too far apart. I did not necessarily disagree with the husband wanting to carry out his wife’s wishes, but I did take concern with allowing her to die when her parents wanted to keep her alive. She was wanted. Loved ones saw value in her life.

Ashley’s parents love their daughter and want to be able to care for her, indefinitely, in their home without too much more trouble than it already is. While good intentions started that path, Ashley’s body was irrevocably changed with a hysterectomy, removal of breast buds, and hormone therapy to end her growth, and Ashley will appear as a child, a “pillow angel” forever. This topic is tough because it is hard as your child becomes too big to move around easily. Having a son, I do not share the fear of rape or discomfort of menstruation, but I understand how bigger is harder with disabled people. Dignity is still present, and my son will always be clean, pressed, and in style. He will have the respect of being treated as the nine-year-old he is, and when he is twenty-one, he will be acknowledged as such because that is the dignity all people, all lives, deserve at the most basic level.

What would I have done if approached with this treatment when my son was five or six-years-old or even younger? I learned to trust my son’s doctors, and what if they were pushing for such a treatment? I may feel differently if I knew my child suffered from pain and discomfort. Every option to make him comfortable would be investigated, but I would hope that no doctor would come to me with the idea of euthanasia or elective surgical changes to make my child less of a burden or “better off.” When my mother suffered from terminal cancer, she talked openly about her opinion of Dr. Kevorkian not being needed as the drugs to take ones own life were easily gotten when deemed terminal. She researched how to do it and claimed she would if things got too bad, but she never did. She fought her illness to the end, and we respected her in every way until that end. Dignity was lost but her life was respected and valued.

Ashley’s parents love her and are extremely courageous to take on the criticism and even to ask the question if it could be done, but people should have said no. Doctors should have said no. Conversations should have been started and advocacy begun to help the disabled and their families to keep the dignity and respect they deserve. It would have been a good jumping off point for discussion, and maybe it still is now as I write my opinions. I fear the day that a doctor may suggest it is time for my son to not burden the world. Everything I have learned, and loved ones I have met… everything good that I have become because of my son would be called into question. And if we as a society decide to do away with these challenges, we will be a less resourceful and a less compassionate society. It is the times of great challenge that make us become the best we can be. My son deserves that opportunity, and so do I.

Magic and Motivation

2008-03-12T19:57:00.000-07:00

There are moments I hang onto and recall when I need to feel special and set apart. I wish I could write that the births of my children were such moments, but I did not feel, as my mother told me I would, that it was a miraculous event to give birth. It felt very animalistic and natural to have babies and not at all miraculous, but maybe that is just my take on it. The moments I recall to boost my spirits include accomplishments that caused my superiors to pause and take notice with whimsical expressions on their faces. Other moments consist of long deep contemplation that gave rise to solutions sometimes in my dreams. Have you ever contemplated something so deeply that it invades your dreams? It is pure magic.

Unfortunately, motivation does not seem to rise from these moments. In thinking about how to ignite motivation in my children, I am at a loss. I can barely motivate myself. How do I explain how important these magical moments are to me, and should I expect my children to relish and hold such moments dear to them? If breakthrough, or breakout, moments are as powerful as I am describing, I should be motivated to create more, but I believe part of the magic lies in how these moments are unexpected and even unexplainable. How do I explain the beauty of dreaming in mathematical expressions? My kids think I am crazy.

The Gifted Mind

2008-03-10T21:28:00.000-07:00

As a kindergartner, my IQ was tested for the public school “gifted” program because my older brother was blessed with an amazingly high IQ and categorized gifted, so I was earmarked for the program. Eligibility was one simple criterion: an IQ of 130 or above. Social adeptness, common sense, and hyperactivity levels were not considered, and this left the program with super strange serious kids like me wondering why we were asked to work on bizarre projects like making movies and performing plays with the weirdest outcasts in the school. They told us it was because we were gifted.

Unfortunately, the program was called Mentally Gifted Minors or MGM for short. That went over well on the playground… we were somehow permanently linked with Special Education and commonly known as the Mentally Gifted Morons, which we probably were. Some of us grew to be doctors and lawyers, and many of us battled drug and alcohol abuse, too. We were a mixed bag of gifts tossed together and learning from one another kept apart from the other students somewhat by always being in the same class of 30 students year after year.

Out of the bunch, two students stand apart in my mind. One decided to get his MD after finishing his PhD and is currently a specialist in immunology at a prestigious East Coast university. The other, he is a recovering heroin addict that was maybe the most talented kid I knew and is now trying to be a regular guy working a regular job. Did being gifted escalate these two young people to extremes? Do gifted people pass through normal never to return but to ultimately hit one of the two extremes of expressing their talent or being crushed by the world? And the personal question is: where do I fall in the continuum? I am in the underachiever constantly amazed by the world category that is weighted down by society but lucky enough to not be genetically predisposed to addiction. So, pretty much normal.