If there is one thing about A-T that you have to learn, it’s how to function while living with it and its challenges. The challenges that our children face are enormous, but those challenges aren’t self-contained to the child who has the condition. The siblings must learn to cope with having their parents unavailable as they have no choice but to help their son or daughter who cannot do for themselves. We do our absolute best to make sure that our daughters understand this, and we make sure to spend special time with them. Then there are the parents who have a continual brave face and must be ready to spring into action like a superhero to the rescue. While I have yet to master leaping over small mountains or scaling buildings, I am rather adept at the scoop and spill. That would be the “He’s going to blow!” manuever when Braden is about to vomit on everything in sight. Then there is the mental coping. How do you learn to cope with something that is “faceless” that is attacking your child?
Oh, you think I have the answer? Now that’s funny! I have no answers because it is different for all of us. This morning Braden vomited all over the bed. I swept him off to the living room while my husband started changing sheets. I redressed him while he put those sheets in the laundry. I cleaned his face while he got him a drink. It’s a team effort in this house. Then he started breathing rapidly. I asked Braden if he could breathe and he shook his head no. I got the inhaler while Justin grabbed the spacer. As I was administering the medication he got the pulse oximeter. It was a seamless dance we did this morning. Like a ballroom dancer executing a waltz, each of us moving in perfect rhythm. Just like that dancer, we weren’t born knowing how to dance this way. Rather, we have had to learn. We have gotten the steps, we have learned the routine, but we both know that soon we will find ourselves attempting to Foxtrot. That would mean learning a new dance and routine. The difference is we now have basic dance moves down. It’s slightly easier to adjust when you know some of the basics. It’s something that is learned. To my sweet new friend with a son who is just two and has learned her precious son has A-T, give it time. You will find a new way of doing things. You will get frustrated, angry, so very sad, but you will also find your rhythm. You will find beauty and grace. It will just take time. They say time heals wounds. I say that while wounds may heal over time, the scars of A-T shall forever be written on our souls.