When you are parenting a child with a terminal condition or illness, especially A-T, there are many places you simply don’t go. To keep your sanity you often don’t look too far ahead, the month, the week, the day, the hour, the moment. You live for the day’s highs and try not to focus too much on the lows. We all cope differently, process the hurt, and struggle in our own ways. Some of us advocate and push hard to raise awareness and funds for critical research. Others of us indulge in what we would have put off until tomorrow. We all do what we can to not be swallowed whole by a faceless monster that is trying to seize our children. We fight hard, we love fervently, we give all we have in our heart, body, and soul to help our children. Still, there are just many places we simply can’t go.
As we pass a park and watch a young boy or girl chasing their friends, we do our best to not notice how easy it is for them to run without falling, stumbling, or simply walking at all. As we listen to the child at the table next to us in a restaurant, we do our best to not recognize how easy it is for them to rattle off their day’s events without struggling to form words despite clever minds or to use silverware to feed themselves. When we see young children playing soccer or ball, we do our best to redirect our attention and not give credence to the fact that those children are doing things we so desperately wish our child was doing. When we are sitting through an IEP (individualized education plan) meeting, we try not to think about how frustrating, sad, and challenging it is to meet the near constant demands of accommodating the needs of a deteriorating condition place on our child. While we sit through yet another blood draw, exam, infusion, scan, we do our best to not focus on how our heart hurts so painfully and what will happen if things continue in this downward spiral. We do not imagine the end, the funeral, the loss, the tears, the inevitable pain. We simply cannot, will not, and do not go there. It’s just too much for any parent to process.
In those moments where we are actively ignoring what is impossible to actually ignore, that’s when we need those people who are there for us. The ones we can call and say, “A-T just plain sucks.” Those people who nod and agree. Those same people are the ones you need to talk you off that cliff when your mind accidentally goes where you have firmly planted “No Trespassing” signs. A shoulder, an ear, a hand, a thought, a prayer, those are the small things that make a big difference. What can you do to support a friend or family member who is waging a long-term war? Be there. Don’t squirm when the conversation goes to that uncomfortable place where you don’t know what to say or don’t want to say the wrong thing. Simply say, “I just don’t know what to say. I love you, and I hate this for all of you.” Know that you don’t have to fix anything, that’s what the experts are working on doing. Volunteer to help give that person a break for a few hours. Raising a child with so many needs makes it dang near impossible to find a good stand in, not to mention expensive. Ask specific questions, “How are Jack or Jill’s neurology appointments going?” or “What were the results of the last MRI?” Let that parent talk and make it ok. Know that life is still going on around us. We aren’t comparing our “hurt” to yours. You can still complain about the other parent on the playground with the annoying and rude kid or the office mate that talks way too loud and forgets to wear deodorant. Just be the kind of friend you want us to be to you or if you were in our shoes.
Now that that’s said, I’m going to try to drink a cup of tea and take a warm bath. I said try….wish me luck!