Up Down Up Down

There's a Yo Gabba Gabba episode with Jack Black, and he does a Disco Roll dancey dance (which I looked for and couldn't find) and the refrain is: "Up! Down! Up! Down! Up! Down! Up! Down! And roll! ..... And back! .... And roll! ... And back!"

I find this cadence echoing in my head frequently these days, partly because the New Friends episode is my kids' favorite and because I disco with Black like nobody's business. But it's also because one day I'm so completely up -- confident that I'm preparing myself for all of Sam's medical issues around his metaphyseal chondrodysplasia, Schmid type diagnosis and feeling utter confidence that we will all prevail and be fine -- and the next dragged-energy down, totally confused and unsure of how we'll navigate the future.

On Thursday I spoke to the pediatric orthopedist Dr. Maurice Albright about the surgery to correct Sam's bilateral coxa vara, about pain management and the spica, or body cast, for six weeks.

I felt so much better after that conversation. A lot of the answers were the best-case scenario, and that gave me hope. Dr. Albright spending 40 minutes with me on the phone in between patients in the OR also gave me confidence, as well as his steady assurance that he would take good care of our son.

He also consoled me in other ways.

A spica cast didn't seem as crazy and scary as it had before, and a good friend said he would help us build a spica chair for Sam, which is awesome.

I learned that Sam will need two sizes of diapers, one tiny swaddler size (or even a maxi pad, Dr. Albright tells me) to tuck into the cast and a big probably size 6 to go over him and the cast. We will have to try our best to keep it clean and dry ... a daunting idea for a toddler in diapers, but Dr. Albright said most people are able to keep it well enough to last the duration.

He's going to arrange for me to talk to the other surgeon (because Sam is so small and the surgery is so long and intense, there will be two of them) and to the anesthesiologist.

I am also still hoping to talk to the doctor in Delaware at the Alfred I. Dupont Hospital for Children, Dr. William Mackenzie, who specializes in pediatric orthopedics as well as skeletal dysplasia. I'd like to discuss anesthesia, and about pretty much everything, since the biological makeup of a person with a skeletal dysplasia (which is a type of dwarfism) is different from someone who does not have dysplasia.

We will give Sam Tylenol with Codeine in liquid form, so that alleviated my concerns of potentially giving him pain medication intravenously. He will have a general anesthesia for the 12-hour surgery, which will likely be followed by a spinal epidural to ease the post-op pain. He will probably go in on a Thursday (Jan. 7 or 21st) and come home Saturday morning if all goes well.

Dr. Albright sounded confident, but not eager or overconfident. It was just the right balance to me. He was exceedingly patient with my dozens and dozens of questions. Some of them were slightly more inane sounding than others, I suppose.

For instance, I asked if they had clowns.

I think Dr. Albright thought I was joking, but I referenced a story sent by a close family friend that found children were much less stressed when there was age-appropriate entertainment like clowns. Dr. Albright said he would see to it that Sam had access to child life specialists to help with anxiety.

I told him this was important -- the article (which I can't link here because the story was clipped from a paper and I don't know which one) mentioned that parents being present surprisingly did not reduce anxiety levels in kids unless the parents were receiving acupuncture or other calming techniques. (I'm wondering if Valium qualifies as a "calming technique.")

Suddenly I felt a shred of control, just a bit of confidence that I could indeed handle this, all while buying a house. This was on the eve of a follow-up with the geneticist to discuss his metaphyseal chondrodysplasia (meh-taf'-uh-SEE'-ul con'-dro-dis-PLAY'-zsa), Schmid type.

As usual, every single time I get the slightest bit comfortable, things shift.

Here we go in genetics.

It wasn't anything specifically that the geneticist Dr. Angela Lin said that I didn't already know. It was just being there this time. I couldn't get my head together.

We talked about some genetically alarming things that may or may not even pertain to Sam's future. They were pretty much things I knew, like, Sam's chances of passing this to future offspring are 50-50. That is if he partners with someone who does not have Schmid. I wonder if it's the same odds for children by two people with different types of dysplasia as it is if they have the same. They are trying to find out for me. That's about all the detail I'm prepared to go into on that subject, and at this point it is not really what we need to focus on.

We had a brief discussion about the possibility of growth hormones, a topic that makes my insides cinch up and knot. I'm almost relieved learning today that it doesn't seem they will help in Sam's case. I don't ever want him to think we're trying to fix him, that he isn't right just the way he is. If others in the world are too stupid to recognize his greatness because he is of a different stature, I mean it when I say it's their loss. Sam is so wonderful that the people who really matter, who will matter to him, will not see his size as anything but a piece of who he is.

I had an eerie feeling with other doctors in the room, as Dr. Lin explained cues for identifying Sam's condition. I didn't mind this; I'm happy for anyone to be more educated on this, particularly the doctors who will help diagnose such genetic conditions.

But I couldn't help feeling protective of him there on that table, small and agreeable, as they discussed how you could tell that his fingers were smaller proportionately because of the hand creasing.

"Are his toes also out of proportion?" one asked.

Not really, Dr. Lin said, though the big toes were broader than an average bone stature.

I asked if this is why his second toes don't touch the floor when he walks. I know this because even when he's barefoot outside and comes in with little filthy feet, those toes are clean. She said possibly, she didn't know.

It was nothing these doctors did, it was just being the center of this discussion, almost as if Sam was a subject and not my sweet little boy. All of that while running down the hall to check on Maya using the potty... it just made me feel protective, like I wanted to snatch him and say, "Don't talk about his limbs as if they are a novelty!" I wanted to kiss everyone one of his tiny perfect fingers.

I maintain that they conducted themselves with perfect professionalism and friendliness and respect for us all. They obviously like Sam as a kid, who wouldn't? But something about it made me want to take my babies and run.

We left there dazed, as I hustled the kids across the street to get some pizza. Then to Ben & Jerry's for ice cream. And then to ballet.

The kids have been acting up. Last week I believe some things sunk in and stuck that hadn't before, and that ranges from my discussion with Dr. Albright to our morning at the hospital.

Jim and I are trying our best to get them excited about buying a new house (to us, actually it was built in 1949), painting their rooms whatever color they want, and then we find ourselves talking to them or around them about the logistics of Sam's surgery, body cast, genetic predisposition.

It's a whole lot for a 4-year-old and a 2-year-old to take in.

It's a lot for a 35-year-old to take in too.

But we're bumbling along, and I'm trying so hard to do things right by them. I just restarted Being The Other One by Kate Strohm, so I can help Maya along through this. Right now, I think she needs some understanding from us. When I noticed her being a little mean to Sam, not wanting him to play with her (more so than their typical brother-sister stuff) I made sure I asked her later if she was angry at Sam. She said she was, but didn't know why. I told her that it was OK to feel angry sometimes because he is getting so much attention in this. I told her she was a good girl. This seems to have changed her attitude dramatically.

Sam is still consoled by me holding him and rocking him and telling him Mama is here. Maya is getting to the point that she needs more. I'm trying to let them both know that we're all confused sometimes, we are all scared sometimes, but I know we will all be OK. We're a family, and we'll do this, and we'll be stronger for it.

I think all in all, we're doing a fairly good job with it all.

Up! Down! Up! Down! Up! Down! Up! Down!