Wednesday

It's only been about a week since I posted my last blog and already I feel like somebody else wrote it. I still feel lucky, and mostly good, and all that.

But I'm starting to get freaked out by the idea of the surgery, and the body cast, and my son's cognizance that well exceeds his age. The idea of him being in that kind of pain turns me inside out.

Tonight when Jim was reading Maya and Sam a bedtime story on her toddler bed, Sam wanted to get down. (I was on my never-ending mission of putting laundry away.) Then, out of nowhere, Sam began shrieking and saying his knee hurt. "It huuuuurrts!" he howled, pointing to his right knee. I told him I'd get him some special medicine, and took him to his room. I decided to give him Tylenol.

That was partly because the mom I met through this blog, whose 6-year-old daughter also has Metaphyseal Chondrodysplasia, Schmid type, and who hasn't had surgery yet for Coxa Vara, said her girl began complaining of pain in her knees around age three or four. Apparently that was the first time she could articulate it, and I guarantee, if I hadn't spoken to this mom, I wouldn't have put this together either. I would have assumed Sam bumped his knee. But I've seen him react this way before to knee pain and because of her, I realized that this stems from their form of skeletal dysplasia.

I gave him his Tylenol in a little dropper to drink down, and he took it, but then pointed to his knee again, and searched for the right words.

"No, Mommy, here, my knee hurts," he said, pointing. "I need my 'peshal' medicine."

"I know honey, this will make that feel better in a few minutes," I said.

"No," he tried again. "Want my knee medicine?"

So I told him that it would take time, but it would feel better in a few minutes -- and that this winter, he would have surgery so his knees wouldn't hurt, and so he could run and jump more easily.

"Run and jump?" he asked me.

"That's right buddy," I told him. "But it will hurt at first, and you'll be in something called a cast, and you won't be able to move much for a while. But then you will be able to run and jump, and don't worry, I'll be right there with you. The doctors will help you and I'll take care of you too."

He seemed to be thinking most about running and jumping before telling me he wanted to go back into Maya's room to keep reading. On our way there, he took my face in his hands to steer it to look in his eyes, as he only does when he really wants me to hear what he's saying.

"You be a doctor too Mommy? You be a doctor too?" he asked.

"Oh honey... I won't be a doctor, but I'll be right there the whole time... I'll be right there, and they will make you feel better and even though it will hurt at first, you will get better and I'll take care of you," I told him.

"You be a doctor too, Mommy? Pwease?"

A sweet surprise

This seems so counter-intuitive.

I felt more frantic and upset about all of this stuff regarding Sam -- all the surgery, the Coxa Vara, the spica cast, and the realization that we had something unexpected and painful to contend with -- all of this stuff, until I realized it was a symptom of a larger condition.

It's hard to explain, but knowing it is part of a bigger picture, and one that could include several surgeries as well as other unknown struggles, it just feels different. Instead of being one huge surgical thing to dread, it is something that will always be part of our lives. That so oddly makes it easier for me in a way.

Well, "easier" is the wrong word.

Of course, I'd rather this not be an issue for Sam and Maya and Jim and me. But weirdly, it felt even more devastating when it was the surgical element alone. I'm not sure if I can even articulate it, or understand it myself.

I had always hoped and prayed that my kids would never have special needs, only because I never wanted them to hurt in addition to what is just part of any healthy upbringing. I had just assumed that it would feel sort of easy, in the way I guess it did for my brother and me.

In the beginning, I think this assumption was one of the big devastations; I never expected any issues like this. Especially not so early on.

For me, part of dealing with this was redefining 'special needs,' and part of that therapy came in talking to my cousin Leigh and getting to know her son, who was diagnosed with autism at age two. I was in awe of how she handled everything, how that just all integrated into, or really became, part of her life. More therapy came from reconnecting with our friends who have two fantastic sons. One of them has had several back surgeries for a type of scoliosis that would have been fatal in another time, when this type of surgery wasn't available. Both of their boys are on the autism spectrum. They astounded me with how they lived with it all so positively, without any overt bitterness or self-pity.

But I was more surprised by how they dealt when I thought I'd have to go through this once, and then it would be over. I couldn't imagine how they could just keep dealing with medical issues on such a long-term basis, and be so positive. I can't say whether I would have eventually come to this place or not, but as much as I mourned following the geneticist meeting where Metaphyseal Chondrodysplasia Schmid type was dropped on my head, I feel like now I'm better equipped.

I suppose it's natural. You do what keeps you best positioned to not only survive, but to thrive. Really, you have to keep going and not anguish or dwell too much, or you have unnecessarily missed out on Life. Because this is life as we know it now, our reality.

It could be so much worse, and those of us who go to hospitals regularly get glimpses into other, more tragic realities.... It is terrifying, and horrible that I look around and feel relief glancing down at Sam's smart, happy, healthy face. Sadness for those families, to the point that it is difficult to make eye contact without betraying the sorrow and relief. But since I wouldn't want anybody feeling that way about me, I make sure I look the mom in the eyes and say hi, and tell her how cute her little girl is, with such pretty blue eyes, without commenting at all on her bald head or dark circles or palled skin. Maya approaches the girl, probably about three, and reiterates her cuteness, and talks about her beautiful turquoise dress.

That is not to say that I don't feel sad and scared sometimes; I do. But somehow, knowing this is not a condition that will just be 'fixed,' but a family dynamic that we will all experience together, always, changes everything.

Part of this dawning came before vacation, and part of it is because we just spent a week on the Cape with my parents. We distanced ourselves from the whole thing -- there were no doctors or even discussions of doctors. We sat on the beach. We all marveled at how well Sam walked in the sand and navigated the water, and how amazingly he has responded to the physical therapy through Early Intervention.

We knew when he was tired and needed to nap or rest. I let him go as far as he wanted. If I saw him limping and getting fatigued, I would offer once to carry him. If he said (as he usually did) "I want WALK," with a pursed-lip expression of determination on his face, I let him and told him what a great job he was doing. The rare moments he wanted to be carried, I scooped him up without a second of hesitation or a sigh to ensure he didn't feel like a burden.

Coming home, being reminded by others that this was happening, at first I didn't want to talk about it. I just feel accepting. And happy. And in a way, I still don't want to talk about the details. I don't want to think about them more than I will need to prepare us all and care for my family the best way possible. That might not always be the case, but now, this is how I feel. You could exhaust yourself silly fretting and worrying and feeling sorrow and self-pity over the course of a lifetime. I'm sure I'll have more to say to my close friends and family members, and my new friend in England whose daughter has the same thing as Sam, but largely, I don't want to dwell.

I hear people constantly telling me how great I'm doing, how well I'm handling this, how wonderful a mother and wife I am. It feels a little undeserved to me. I'm just doing what I've always done. This shift wasn't conscious, it stems from knowing this is life, and we either have fun with it and appreciate it, or it's no good. For me, that isn't an option. Is it for anyone? I remember feeling like my cousin and our friends with their sons' medical issues were so strong, so positive, and I guess now I get it when they don't quite get the praise (though they appreciate it, and so do I).

Spending a week at the beach with your family forces you to remember how amazing life is, as cliche as that is. It's beautiful and painful and delicious with opportunities and pleasures if you're not too busy or focused on the bad stuff to notice.