Confronting the reality of my son’s condition as fatal is a battle that has taken me to the brink of insanity over and over again. Sometimes the grief is so heavy that I don’t think I can bear it another second. Then Dan will cough or crack one of his jokes that make me howl with laughter and I’m back in the moment with him. As difficult as it is for me, I realize it’s even harder for Daniel, and that helps me set my own grief aside.
The summer before Daniel started third grade, we had to confront the reality that his days of walking independently were over. My husband, Kevin, had devised a “punishment” for rude behavior, like burping as loud as you possibly could at the dinner table – a given with boys. The rule was that if you burped, you had to run out to the edge of our yard and back. We had watched Dan run out in the field with his brother and sister (because inevitably one child burping leads to another, like yawning does) wobbly but holding his own. They would shout with laughter and fly across the grass, damp with evening dew, Kevin yelling “faster, faster.” Dan had started to get unstable, and couldn’t make his legs work the way he wanted them to. He fell if there was nothing to hold onto, so he started having to stay at the table with us, and when school started he had to use a wheelchair. He would break our hearts, saying “I wish I could still walk” in a tremulous voice when his siblings would run out into the yard, and I would scoop him up on my back and try to be his legs. We knew it wasn’t the same, but he would laugh and seem like a child again for a few minutes.
This summer it was the battle to keep him eating that we lost. It started out as several bouts of pneumonia, close together, and a week as an inpatient on the pediatric rehab unit. He hadn’t been gaining weight, had stayed below 60 lbs. for close to two years. We had talked about having a feeding tube put in his stomach to supplement his meager appetite, complicated by tremors in his hands that made his food fly off the fork. He’d been great about letting me help him eat, but the energy it required just to chew and swallow took so much out of him there was no way he could make any gains in pounds. We decided to get as many tests out of the way as we could while he was in the hospital, so he had a gastric emptying test and a swallow test. His gastric emptying test showed delays and although his swallow was found to be completely “normal” according to the speech therapist, he had a problem with something called his vallecula. Somehow, he had lost sensation in his vallecula, so if food or liquid (including saliva or mucous) pooled there he didn’t feel it and it would slide right down his trachea and into his lungs. After the test was over, an occupational therapist took us to a private room and told us (including Daniel) that while she was being conservative, she had to recommend that he not receive anything by mouth from that day forward. I was in shock. This possibility had never entered my mind. Dan was exhausted by this time, and it was hard to know how much he took in. I had a sense of deja vu, as if I was back in the examining room at Johns-Hopkins the day he had been officially diagnosed with A-T. The doctor’s had to keep repeating that Dan had it. My sweet, healthy -looking 2 & 1/2 year-old son had a fatal genetic condition that no one in either family (mine or my ex-husband’s) had ever heard of or been diagnosed with. It was true though, no matter how much I didn’t want it to be. Something short-circuited in my nervous system that day, the result of an adrenaline overload or an implosion of emotion that couldn’t be categorized. (it was eventually diagnosed as fibromyalgia and panic attacks, but that’s another story)
Back in the little room, sitting in child-sized chairs and holding Daniel so he could rest, the O.T. asked if we had any questions. My mind had gone numb, and I honestly don’t remember if I asked anything or not. By the end of the week, Daniel had a tube in his nose that went down into his jejunum and two weeks after that he had surgery to have a permanent j-tube put in his abdomen. It felt like he was being tortured, and I was forced to be a participant.
This has been an unbelievably difficult adjustment. Food is a huge part of life, and nourishing my children nutritionally is an integral part of being their mother. Every aspect of eating from shopping for food, (Oh, Dan would LOVE that) to making school lunches, (Al and Annie like ham, Dan likes chicken) to planning dinner and setting the table (we need five place settings – oh, right we only need four) reminds me that things have changed for Dan, for all of us. He keeps asking “what will I do at school during lunch?” and I don’t really know how to answer. We still sit together as a family for dinner, and I suppose the silver lining is that Dan never really enjoyed eating that much anyway. Most of the time it was more of a chore for him than anything. He’s also finally gaining weight, which is a blessing, because he had started looking skeletal and we worried that any illness could take him from us because he had no reserves to fight it off with. As with much of what has happened, it’s not simply win or lose, it’s compromise, letting go, and releasing expectations whether catastrophic or miraculous. It’s doing my best to love Dan without limit every moment we have, and surround him with others who will do the same when we are apart. It’s also harder than I ever could have imagined almost a decade ago when the doctor’s diagnosed his condition, and added a realization of what is really precious about life. Whether that counts as winning or losing, I don’t know. The analogy of life as a series of battles was already worn and tired before I typed it into the subject box on this post several days ago. That’s reason enough to stop thinking about things that way.