Confirmed

It's official.

Sam definitely has metaphyseal chondrodysplasia, Schmid type.

It's now a deciding process of how to react to this news. The typical parenting struggle of walking the line, the one you walk 1,000 times a day as a parent, from deciding what the kids will eat for lunch, to what you'll do (go to the park or take a wagon ride?) to how you react to them each tugging at the same toy bucket (never mind there are seven scattered in your yard) and both screaming that he or she had it first.

The geneticist mentioned that it is important to protect Sam's medical privacy and that we should not associate him with the word "dwarfism."

I'm feeling hesitant to post pictures of him here for that reason, but I can't help but think, if we do this right, and teach him that this is just one part of his wonderful self, maybe he could embrace it. I'm not saying we necessarily use the word "dwarfism" -- in fact, I'm all for letting it slip away from all of our consciousnesses for a while.

But I do want to raise Sam knowing that he has a form of skeletal dysplasia, and I don't want terms like "little people" and "short stature" and "dwarf" to be bad or shameful words, or to mean anything but positive things in our house. When Sam's a little older and begins asking, maybe we could tell him then that his sort of dysplasia means he might not be as tall as some other kids.

Or maybe we'll just try to raise him knowing there is power in standing apart from a group, and that he's smart and capable and adorable regardless.... and fortunately he is not living among giants. I feel grateful that we are all pretty small. I mean, we already have step stools around the house, built by my husband Jim's grandfather, who might have been around 5'2" (I'm guessing here) and we all use them daily.

Maybe we'll have some interaction with local chapter of Little People of America, per the geneticist's suggestion.

The little reading I've done about LPA demonstrates a huge amount of pride among the short-statured community. I would like for us all to be around that sometimes, to remind ourselves and teach our kids that it's important to be proud of your physical package, even if something about it varies from what is deemed normal.

And I wonder if letting him grow up aware of all these things is easier than if someone drops the bomb on him when he does start asking. It reminds me of kids I have known who grew up either A) always knowing they were adopted, even before they quite knew what that meant or B) not knowing until one day.

Even if they were very very young, my experience was that an adopted child's world was turned upside down by the realization that something they took for granted, biologically, was not so. If you don't raise a kid just knowing something, it will come as a surprise, especially something this big. I would imagine there's an element of betrayal. How could you trust these adults you thought were telling you straight all this time? I don't think it's the same as other things we tell our children (tooth fairy) because those bring magic into a child's life by them believing. Omitting a huge part of a person's Being, something they will have to know at some point, seems risky.

The geneticist mentioned limb lengthening, and assured me it is no longer controversial, but I know something about the pain involved based on an awesome Associated Press story my friend Gretchen Parker wrote while following someone going through it for two years, accompanied by the late Roberto Borea's phenomenal photos.

The procedure was developed to correct a discrepancy in children's leg lengths, but was adapted to lengthen limbs of short-statured people. To me, this would never be a decision I would make for my child. Ever. Whether his height was projected at 3 feet or 5 feet. This would be a decision only he could make, and if he did, I would be there for him, but I definitely would make sure he knew I love him just as he is. I never want him to think he isn't good enough just the way he was made.

I'm re-starting a book called Being the Other One, by Kate Strohm, since when I first began reading it, I felt like much of it wouldn't apply to Maya. Back then, I thought we would have one surgery and everything would be over; I didn't think there would be a noticeable difference between our family and others, and maybe there won't be. But maybe there will be.

The book is written by someone who grew up the sibling of a special needs child, and addresses some of the guilt and frustration fostered in her growing up. She also integrates the perspectives of many other children who have felt marginalized by their family's focus on a special-needs child.

It's so important to me, while emphasizing how wonderful Sam is despite some of these hurtles, to make sure Maya knows she is uniquely wonderful and amazing and smart and funny. She also stands out from the crowd. She is so feisty and intelligent and creative and sassy. She is sweet and empathetic and I want so badly to be sure she doesn't get lost in the shuffle, or feel less important than her brother.

As usual, I am already putting too much pressure on myself to do this exactly right, not to slip up or waver one bit from what is best for everyone...