The Mother-Son Dance

I didn't find out about Isaac's genetic abnormality in the correct order. Actually, I don't know many families that did find out in the correct order. There is an order to these things, you know. An order that is meant to gently inform the parents that the child they know and love, may endure a road unexpected. No, I wasn't let down so gently. Instead, a pre-op doctor suggested we run the genetic screening during surgery number two, and see if anything came up. I'd never met this person, and I'd been putting off the testing for a few months, but once you enter the world of surgeries and testing, you try to schedule blood work, and CT's and MRI's all at once to take advantage of the anesthesia, so I agreed.

I assumed the results were normal since I'd never heard from anyone (I know better now, I call, repeatedly, until I get answers)--it does seem like one of those tests where they would call and say, "you should come in for a meeting with us." Instead, I'd taken Isaac to his post-op ENT appointment, and casually asked his doctor if she could look up the results of the blood work. There it was, on the computer screen in front of me, the doctor didn't even need to say anything, in big, black, bold letters I read: ABNORMAL Microarray Results, Male. We were both silent at first. In that moment, I felt as though I would fall to the floor and it took everything I had to maintain my composure and calmly ask the ENT what that meant. She didn't know. She only knew that it wasn't Noonan's Syndrome, which is what she'd thought he may have.

I called the geneticist right away, and after arguing with an unsympathetic secretary who wanted us to wait two weeks before seeing the genetic counselor, we got in two days later. Like I said, this is not how all of this is supposed to happen. You are first supposed to meet with a genetic counselor, prepare for the testing, and have a post-blood work meeting in place.

Our meeting with the genetic counselor went as well as could be expected. She was wonderful, and calm, and thoughtful--she'd learned to do her job well. I don't remember much about that meeting. I know I have notes written down somewhere, but this is what stood out: I asked if he would ever be able to graduate from high school and go to college. Maybe it seems like a dumb question, but in that moment, it felt like that was the key to any future he could possibly have. She said she didn't want to sound like a jerk, but the reality of the situation was that we didn't know if our typically developing child would go to college. Basically, she was telling us that anything could happen and we had to stay open minded.

I try to balance open-mindedness with reality. And reality hits harder than ever at the most unexpected moments. It almost always hits me smack across the face as I watch the mother-son dance at a wedding. Sure, sometimes those dances are awkward, or you can tell the two of them just don't have a close relationship. But many of them, I feel like I know what that mom is thinking, I feel like I can see the flashbacks run through her mind as she pictures key moments in her journey of mothering this son, whom she held as a baby and now again as a man, on his wedding day.

As I watch these moments between mother and son, tears fill my eyes, and the sadness creeps in because the reality of the matter is, sure, Isabella may choose not to get married, but that is a choice, and my son, more than likely, will not have a choice. Though I will, and have, shared many moments with him that are equally as special, I won't get that one. I won't see my son grow to be a husband, or a father.

I told Walter about this, and he suggested I take Isaac to one of the community mother-son dances when he is older. Maybe we'll do that, but for now, we have dance parties at home, and I tell Isaac to shake his hips, spin around, jump up and down, and wave his arms in the air, and he thinks it is the funniest thing in the world. And I try to think like a mom, and remove from thoughts, this a really good PT session. 

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We went to The Ohio State Fair last Friday, and we were shocked that Isaac wanted to try everything, including, rides with me, and archery. You must understand, he usually does not like situations where he doesn't have control over his body or feels unsteady--like a ride that goes up and down and twirls around. He also does not like people touching him, so when he let the park ranger touch his hands and help him pull back on the bow and arrow, we couldn't believe it. When a situation like this comes up, we give him the opportunity to try something, but he always runs away crying before actually trying what he was initially so eager to do, so this was all very exciting and encouraging for us.

Experiencing pure joy on a ride with me...

Next time I'll share pictures of Isabella practicing with the bow and arrow.

I leave you with a quote from One Thousand Gifts: A Dare to Live Fully Right Where You Are

"Who would ever know the greater graces of comfort and perseverance, mercy and forgiveness, patience and courage, if no shadows fell over a life? I dare flip the cue card over and I make out the words on the back side, 'See now that I, I am He, and there is no god besides Me; It is I who put to death and give life. I have wounded and it is I who heal' (Deuteronomy 32:39 NASB). I nod. I know. I know. And these truth words reconfigure the battlefield under my feet" (Voskamp 90).