Tuesday, April 17, 2007

Hard

I walked into Dear Son’s classroom and the young man was just recovering from lifting Dear Son into his wheelchair. I had just finished his Individual Education Plan (IEP) this morning and asked if I could go to the classroom to visit Dear Son. I had told him last night that I would be going to school today and that I would try to stop in around his lunchtime to see him. That is one of the high points of my world since Dear Son is always excited to have me see him in the classroom. Where other kids may no longer want to see their parents at school, he glows when he sees me. He hears my voice then looks up to see me, his eyes lock onto mine and never move. He’ll drop his head down as he breaks into a big smile. Everyone notes how glad he is to see me and they can feel the love as he stares right at me. I get closer to him and resist kissing him on the head. After all, this is high school.

One of the classroom aides, is a graduate student who is quite fond of Dear Son. Dear Son has bonded with him too from what I understand. The young man, was sweating profusely when I came in. I felt somewhat relieved to see someone else sweat, someone who could identify with me on a personal level. It takes a lot of energy to lift Dear Son and I sweat too. Sometimes I have to sit down after lifting him, especially if I’ve moved him around quite a bit or if it’s been a difficult move. My back gets pretty sore and well it’s hard sometimes. He agreed it was a lot of work to lift Dear Son and that he had just put him into his wheelchair when I came into the room. We talked a bit more and then he asked if he could do some Respite on the weekends this summer. I said that would be fine and knew Dear Son would be excited to have him come to our house and do things with him.

It’s ironic lately, that many of the people that have begun to care for Dear Son are young, well, much closer in age to Dear Son than before; the aide at school and two of his young babysitters, one who is eighteen and one who is sixteen. I can’t help but wonder when I see these people, what Dear Son must think. Does he like that they are closer in age to him or is it embarrassing for him, especially in terms of the babysitters? They are after all, changing him and providing personal care in terms of feeding him as well.

Probably the bigger issue when I see these people is that I can’t help but think of “what might have been”. I see them and talk to them about their lives. I pay attention to what kind of people they have become, what they are doing now and what they are interested in. It would be cool to see Dear Son all grown up and normal. I wonder what he’d be doing or what he would like. I saw different newscasts this weekend of the high school students getting ready for prom and I wondered what type of girl he’d ask if he were normal. I admit I felt a bit like I missed out. I’d miss the excitement of him getting ready, taking pictures of his date and hearing all about it. The thought of hearing my son speak and having a conversation with him would be exciting. I’d also miss his Dad and I talking about him going to the prom. It’s funny because I can’t say that I ever really spent much time over the years thinking about this and yet, because all of these people are so close in age, it seems to have started the process.

Or maybe it’s because he’s almost all grown up. It’s been a real pleasure seeing the young man he’s become: the long legs, the big muscles, the shaving and his own maturity. He’s grown into being a man. I wonder sometimes if Ashley’s parents will have second thoughts. After all, when your children grow up, it a pleasure for you and for them to watch them mature. Everyone wants to see their kids grow up and I am certain, at one time or another, they wonder what their kids will be like.

My mind wanders briefly again as I am in his classroom. Suddenly, I hear my name repeated again and again as P tries to get my attention. P is Dear Son’s classmate who used to ride his bus home every day. He’s grown as well and is anxious to speak to me. I am happy to see him as well and I have to admit to being a little depressed this year knowing he wasn’t on the bus with Dear Son. I had grown to enjoy our little chats every day while they got Dear Son off the bus after school. And P, well he was a happy and delightful kid. I walk over and put my arm around him. He drops his head down and blushes as I ask him how things are going. I ask him about “school” and he quickly corrects me, “this is high school”, “high school”. “Yes it is, I tell him.” I talk to him for a bit and ask him about his girlfriend. She attends a different high school and they still go out together. He seems a bit worse than he was last year and I wonder what has happened to account for his decline. I finish up with him and go back to Dear Son. I leave and give him one final hug, and try not to overdo it in front of his classmates. I finally lean over and kiss him on the head. I hope I don’t embarrass him when I do that, but I can’t resist.

In the end, I am proud of who Dear Son is and who he has become. I think back to when he was younger and how I wondered what his life would be like and wondered what mine would be like caring for a severely disabled child. I would imagine the “what if’s” , only it was the reverse, wondering what it would be like to have a disabled child all grown up when a normal child was the default so to speak. Now that I know what it’s like to raise him, I find myself switching back and pondering the “what if’s”, only I wonder “what would he be doing if he were normal?” Overall, I love who he is and who he has become but sometimes, on a nice spring day like today, I can’t help but be transported to the “what if’s” and wonder “what if he were normal, what would he be doing?”

The young man lifts him out of his chair once again. It’s odd to see him doing this, a man who is shorter than Dear Son. All of his life, he was just a child and the care takers were adults and always taller than he was. Now, he’s taller than all of them. Just another reminder of how much he’s grown over the years. Come to think of it, so have I. I am in a good place now.

5 comments:

Lois Grebowski said...

Hugs, Dream Mom...sounds like you're going through the stages of grief all over again.

I know there are times that grief just pops up. Like the counselor at my old job used to say, "you will get there."

Hugs, my dear...infinte hugs...

jennifergg said...

Sigh. I can't do the what-ifs. It still hurts too much. I hope that someday, like you, I can.

Summer said...

So poignant. Your post reminds me of something of just come to realize of late. You can be simultanesouly proud and amazed for your child while feeling sad for their struggles and what is missed.

Someone further on this journey than me pointed out when I said this that we always will have our feet in both worlds. Over it's less and less of the loss and more of the joy. But there are always those poignant little moments that sneak up on you sometimes.

Dream Mom said...

Summer, you hit the nail right on the head. It's just one of those moments. And that's o.k. I am happy with Dear Son but every once in a while you like to imagine what it would be like for him/them to be normal, even if it's only for a few minutes.

neonataldoc said...

I'm guessing that Dear Son both enjoys the caregivers his own age and is perhaps a little embarrassed by it. All kids like to be with people their own age.

As for the what if's, ay-yi-yi, I can't even begin to think what it must be like.

ND

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