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.
7 comments:
I've been reading your heart-wrenching posts about Chris' placement in a facility ever since you had made the decision after your MA trip, but every time I tried to comment and think of something encouraging or supportive to say, I got paralyzed by the intense, agonizing pain of it all. These seemingly small things, the unmatching trunks and his bed are big deals indeed, big enough to make my heart ache and to keep you and Chris on my mind and in my thoughts, every day. I'm sorry I don't have anything encouraging or inspiring to say, but I'll buy you a drink, if it helps to hurt less.
Erika, your comment is very encouraging mostly because of your recognition that small details we take care of as parents are now absent from my son's daily routine. The people in my immediate life keep reminding me that my son doesn't care about these things and they fail to realize how we strive as parents to make our children's lives nice and as normal as possible. Thank you for noticing.
I'm totally up for a cocktail!
This post makes me want to weep. You know why? Because a mom's love in whatever way, shape or form matters. There are things that I do for my neurotypical that he won't appreciate until he's older. There are also things that he'll realize later that he'll roll his eyes over. That you have cared about these little things, fully realizing that your son might never be aware of these little things, is the most beautiful testament of your love and dedication and what kind of person you are.
One of the things that I have been trying to impress upon my neurotypical 10 year old, over and over, is to go the distance. Even if it doesn't 'count.' Live a life you'll be proud of. Treat people honorably. Do kind things, even if no one seems to notice. It matters, I tell him, over and over. What you have done for your child matters.
Last year, I met a girl in a summer course at NYU. She was pretty, smart, and confident as could be and also getting her Master's in Education from Columbia University. She was 24 years old and for some reason (I am 41) we connected and found ourselves chatting in between classes. I learned that by age 8 she was still not speaking and that the NYC public school basically thought she was retarded. I found out that her parents fought for her to go to a special education school on the city's dime. I found out that she only learned how to speak through flash cards and someone sitting with her one on one for years, teaching her word for word. I sobbed and sobbed on a NYC street corner as she told me how much her mom's love meant to her, and how she would not be anywhere near where she was were it not for her mother....
Of course not all children's challenges are solvable or remedied by a mother's love. But the devotion and care you have demonstrated to your child is something that your other children and others witness and I feel is so important in the bigger picture. It is not for naught. Standing on that street corner and listening to this girl thank her mother for her love... it was something I wished all parents of disabled kids could hear.
I can't fathom how many hours a day you must spend thinking about him. How hard it must be, how weird it must feel just walkking around the house, looking at the spaces.
What are you doing to take care of yourself on a purely psychological level, if you do not mind my asking? This can have, and I am only guessing here, a deep, cutting impact on anyone, almost like losing your son without the actual 'loss'. It has to be tremendous, and I hope you have something in place that can get you through this very, very difficult time.
I'd crumble like a stale crouton probably, but that's just me.
Gimky,
That's a fantastic story! Thank you for sharing it here. My son may not know how much I love him, and I can live with that because I am doing all I can do and have always done all I could do for him.
I visited Chris today and he looks great. One of the nurses there that resembles me physically (blond) told me that he reaches for her and tracks her around the room. Chris does this because he thinks she's me or someone like me or whatever his mind fathoms. So, I know he loves me, or the idea of me, and this nurse has noticed and is giving him affection.
Blogzilly,
Ouch! Yes, I think of him all the time. I have to admit that I still think I need to hurry back when I am out to take over his care, and then I realize I don't have to and I am relieved along with being sad. Up until Friday, I really was not sure he would go to the facility. There had been so many delays and problems. Now that he's really not here and he's ok, I'll move on. I'll go back to work and finish my graduate education. My other kids' problems are finally being addressed with the proper energy and time that they deserve.
I'm full of crap. I couldn't get out of bed on Saturday and yesterday was the worst day of my life, but I am better today. You are right, I need to fill the time and feel like his not being here is for a better reason than my exhaustion and aching shoulder and mental health. This is not an ideal answer to the problem of how to care for my son. But it's the best I can do for now. I miss him constantly, and he fell asleep cradled in my arms today while I sat on his area rug on the floor of the common room of the facility.
F**k, I am a crouton that's not allowed to crumble.
OOPS...my intent wasn't to cause any ouch, it was more to ask, do you have anything in place to help you with that? Like counseling or friends and such? (Hope I didn't cross a line by asking...)
Blogzilly,
I appreciate both of your comments, and you are absolutely correct to ask me if I have some support in place. The problem is that I have very little in place. Your comments act very much like a support for me! I didn't mean to make it sound painful to read your comment just that you are correct in your assessment of my situation. It would have been far better to have more in place but I could not do more than I did. In fact, I placed my son outside my home because of a lack of support. And you know, you would not crumble in my situation! You would handle any situation that comes at you!
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