I've tried so hard to keep a positive attitude that I don't think I've acknowledged the reality of our situation. I'm working on doing that these days, but I'm back to the place where I don't know how much to tell Sam at age three.
He understands so much more than he did, now he is aware that he can't run as fast as the other kids (or really run at all yet) and one day, frustrated from never ever winning a race, he began bawling. "Mommy, why don't I ever winned the race?!" I picked him up, murmured that he wasn't as big as the other kids, and that I know, it's hard not to win sometimes. Right now he still wants me to scoop him up in my arms and kiss his fat cheeks, but I'm wondering about later.....
When something like this happens in your family, at least for me, you just spend all your time thinking, "OK, whatever we have to do to make things right, he'll be fine, everything will be OK....". He's not that much smaller than the kids his age, maybe we don't even have to approach the whole Schmid thing, and talk to him about dwarfism. But that doesn't feel right either. On the one hand, I don't ever want him to know he's different. But even more, I want him to be proud of who he is and understand why things are more difficult for him than for others.
He already knows something. Then there's this blog, where I've just aired his whole medical history. I'm back to wondering if that hasn't been such a good idea. Maybe I should go back, change the name. But I guess it's probably too late for that too.
Next year he's going to preschool, and I will have to bring him with a step stool. I have to put a hook in the bathroom today so he can reach the hand towels.
He wants to be independent, and still relies so heavily on adults for assistance, going up and down stairs, getting up on a swing...
He's nearly 3 and a half years old, and all these things that you take for granted, he really struggles with. Don't get me wrong, he's doing great, he has well surpassed doctor expectations with his recovery, and we keep focused on that in this house.
But reality is setting in for me. Finally. My 3-year-old boy can't climb stairs without help. He can't run. He will do these things, I'm confident, but it pays for me to acknowledge how tough this must be for him. I don't want to give it too much weight, I don't want him thinking he CAN'T do this stuff, but I also need to recognize what is real for him.
I don't want the kids to pick on him, but am unsure whether he will want the attention of me putting a flyer in everyone's cubbie, a suggestion on the Little People of America's Web site. I thought it was a good idea.... it would help the kids to understand that he's a bit smaller, but they should not pick him up and that after the winter, he'll be coming to school in a body cast, and will have to relearn to walk after that.
It's so hard because he's in between. He's not, actually, a little person. He is small, but he's not that small ... I really want him to be proud of just the way he is, because really, he's perfect. I probably should write a letter to send home with parents. But then, I want him to have the option of telling people himself if he wants. Then again, I need him to know that being small is wonderful, even if our culture places so much value on height in boys and men. But I'm sensitive to the fact that he might not necessarily feel as if he belongs in either world.
What do we do?
I have no idea, I just fluctuate all the time. It's been so much easier to deal with the day-to-day and not think about his future. But here he is, a smart, bright 3-year-old who will get that he is different. He will recognize this, and if he doesn't, another kid will surely point it out to him. Even I am just coming to terms with his differences. You want so badly as a parent to think there's "nothing wrong," but I'm finally accepting, yes, he has a genetic disorder that leads to bone abnormalities, making it more difficult for him to climb and run. This is our reality.
Just the other day, Maya told him he was a little person. I think that's the term she used, which I found interesting because I don't know that we've ever used that term in front of her. I think she was just trying to convey that he was her little brother.
He got really upset, shouting, "I'm not a little person! I'm a BIG BOY!"
I told him that was true, he was a big boy, but that he was her little brother and he would always be her little brother. I told him that I was Uncle Scott's little sister, and no matter how old I get, Scott will still be my big brother. I think he got that. I also said that people come in all shapes and sizes and colors. You know the talk. The acceptance talk in terms a 3-year-old can understand.
The thing is this, how can you help a 3-year-old be proud of who he is, when success at age 3 is measured by who is fastest and who is the biggest? Maybe it's best not to drop a big bomb on him so young .... just kind of gently fill him in as time goes on. I don't want to be deceptive. But then again, he's only three...
And, if I let him in on his real physical limitations right now, will that make him think he is limited always? Will he think that he can't play soccer, which he desperately wants to do? Do I sign him up for soccer if he insists on playing, knowing fully well he can't keep up with the other kids and it might cause him embarrassment and frustration?
I know I have to keep him in activities he can be successful at now, but what are those for a 3-year-old boy? So much of those revolve around physical capability, or at least assume that basic physical motor skills are available. I can sense from Sam that he does not want to think he is limited in any way. We do lots of art projects and have instruments.
Yesterday I mentioned as I watched World Cup soccer (replay) with the kids that I am not a fast runner. I am not a fast runner. But I have endurance, I told Maya and Sam. I can run a lot longer than many people, but I can't sprint fast.
Maya said, "I'm a fast runner!" and of course Sam said, "I'm a fast runner!"
In his little mind, he IS a fast runner, and is it so wrong for me to want to let him believe that? It might actually be wrong, since like I said, some kid will point out to him that he is not a fast runner.
But if he believes he's a fast runner, and wants to become a fast runner, maybe he will. If I tell him he has this condition, will he think he can't ever run fast? Who am I to say he isn't fast?
I don't really want to limit my little boy that way. But I also don't want to ignore what I know.
And on top of all these questions I'm asking myself, Maya had another seizure, for 15 minutes. Her cardiology tests came back fine, so we still think this is something to do with the wiring in her brain, but we're now faced with medication. After four seizures, it's time. I don't want her to have one in class, I think she'll be mortified and scared, and worse, I think the kids will be afraid.
If it changes her at all, we can just take her off of it. It's not like she'll be on it forever. We're still hoping she'll outgrow this, whatever it is. But having ruled out other possible causes, if it is a glitch in the brain wiring, medicine would probably help everything fire correctly. (I should probably note, we feel strongly that we need to make the decision involving Maya and medication ourselves since we have probably educated ourselves more than most on Maya's specific situation.)
I wish it were that easy with the questions I have about Sam's issues.
The questions I have about him are much less scientific though, and much more nebulous. If we make the wrong choice, it's not like we can just erase what we've already said or done -- just change our minds again, say oops, and move on. So I'm probably not actually asking for feedback* as much as I'm finally putting this out there: I have no idea what the hell I'm doing.
* If anyone who has gone through something similar has any ideas, please feel free so share. I can always put my email address in a comment and delete it if you want to stay anonymous on my site.
