If there's one blog of mine to read as soon as it posts, it's this one.
Otherwise, you might be a little confused when you see not only has the name changed, but all the names have changed.
The people in this blog will become Maya and Sam. I will become Rachel and my husband will be Jim. Even the URL will change, if it's available, to MayaandSam.blogspot.com. My email address will stay the same so people will still be able to communicate with me. I have contemplated deleting it entirely, but selfishly, I'm just not ready to do that yet.
My son Sam (this will take some getting used to!) is almost three and a half. He's in preschool now, and Sam doesn't know that he has metaphyseal chondrodysplasia, Schmid type, a genetic disorder that is linked to dwarfism. He does know he had bilateral coxa vara, a rare bone condition that was brought on by Schmid. That he knows because he's had two major surgeries, and two osteotomies, each followed by a month in a spica cast.
Sam is starting to realize something though. He's a very smart 3.5-year-old. He sees the look of surprise people have when I tell them his age. He realizes many 2-year-olds are bigger than him. He refuses to let Maya refer to him as her little brother. Yesterday I found him a Batman cape, finally, because he'd been wanting a superhero cape for months. When I told him I needed to pin it up, he ripped the mask off and said, "I don't want my cape anymore. Take it off!" The only reason I could think of was that he was embarrassed about being what he perceives as too small, yet again.
He is also aware of his physical limitations. He knows most toddlers don't need help up and down regular-sized stairs (though he is getting so much better at this after his surgeries) and he sees them jumping off of tall things and landing on two feet. Sam doesn't even attempt this, but he is trying more and more to jump off small things to practice. He is doing so well, his jumping is getting better and better. Before his surgeries, Sam couldn't go down a slide, or if he did, he could not land on his feet. He's doing that now too post-surgery. But I think Sam just wants to be like everybody else.
It's this feeling that has led me to the sinking awareness that I should never have broadcast our real names. So as soon as I post this blog, I'm changing it all.
Sam's geneticist (all the medical names will still be true in hopes it will help others who might need expertise on these subjects) had told me it was important to protect his medical confidentiality, but I didn't listen. I don't know why I didn't listen; I think part of me just never expected Sam to become old enough to have an opinion about this. Or maybe it was just that I fully intended to raise him knowing about his genetic condition and have pride in who he is, just as he is. I still want to do this, but giving a 3-year-old this much information doesn't feel right either.
I've hit a wall again in knowing what to do, and as time passes I get more and more perplexed, to the point of nausea, about how to handle this.
I know I don't want him to hear about his situation second-hand.
I know I don't want to tell him about this too young and have him just be angry and never want to speak of it because he's embarrassed.
I definitely don't want to assume he will want this information out there.
I try to think back to 5-year-old Rachel, and how important size was then, and how everything was judged by how big you were and how fast you could run. I was the youngest in my family too. Adult Rachel often forgets how much that stung sometimes. Some of this is just knowing he is the youngest, and a normal part of that. But I am sensing that some of it is outside the realm of typical, and I always said I wouldn't just pretend all was typical when it's clearly not. That doesn't help anyone.
I know it's too late for some of you, but if the local people who do know our identities would keep this very discreet with your children, I'd really appreciate it. On the flip side, please let me know if people are very curious about his size. It's hard for me to gauge, other than the expressions I see people wear when I tell his age. At the public gardens the other day, I saw one man stare in shock as he heard Sam articulate something so brilliantly (he is verbal even for his age). I saw him nudge his spouse and ask incredulously, "Did you see that little guy talking?! That was amazing!" I don't know if Sam saw, but I'm sure he hears plenty of other comments and sees plenty of other stares.
And that makes my heart sink.
I suppose it's time to contact the LPA ... even if it's just for logistical answers, like, is there an implement that would allow him to turn the bathroom light on, for example, so we don't have to leave it on all the time.
My good friend on the phone last night, we'll call her Jill, said she just gives the talk about how people come in all shapes and sizes, and I love that talk. We have that talk often in our house. How much do you really say to a 3-year-old? Will Sam be angry with me for not telling him always? I just figured I'd raise the kids with the awareness. I go back to my adoption example. I always figured I'd always tell kids they were adopted (if I had adopted, which I didn't) so they didn't have the bomb dropped on them when they got older. But the way we're headed, there will be a bomb.
Will he be scared and shut down if I tell him this young? Will he be relieved to know why some things come harder for him than others?
Right now his favorite book (one I need to buy, we got it at the library) is Giraffes Can't Dance.
Gerald the Giraffe gets laughed at by the other animals when he attends a dance. Gerald has a hard time, he tends to trip over his own feet. Sam falls down a lot too. Gerald can't dance like the others, who all have their own special wonderful dance. They jeer at him until he gives up and leaves the dance.
He's feeling pretty bad when a cricket comes and tells him that he can dance if he finds his own song, and stops trying to dance to everyone else's. Gerald listens to the breeze in the grass, and the cricket's song, and begins to move his own way. The animals gather around him and cheer at the most beautiful dance they've ever seen.
Every time we read it, Sam lights up, and I try not to cry.
