I often think of our children who have A-T in generations. Every year of an A-T child’s life is approximately five for the rest of us. That would make my seven year old nearly thirty five. Although I swear to you he ages me as quickly as he “ages.” About a handful of parents new to the A-T diagnosis contact me each year. It is so hard to feel how heavy the weight of the diagnosis is on them. After Braden’s diagnosis we were in heavy mourning for about a solid year. Extending a hand to these families, while heart breaking, makes me feel as if I can help in some small way. It’s not a fun club to belong to, but there is much we can share with each other. We are now four years out from the day he was diagnosed. What’s life like now compared to then?
When your child is first diagnosed it feels as if there is a giant elephant in the room. However, slowly but surely he finds a quiet corner to sit down in and makes himself as unobtrusive as possible. Oh there is no ignoring our elephant and he seriously smells. He wreaks havoc on most days, but we have learned that there is no getting rid of him so we might as well learn to accept him. In short, we have learned that A-T is a giant beast of a diagnosis. It is a heart breaking soul crushing situation to be in to know you will outlive your child. We have learned that despite the hardships we can and will persevere. We have learned that it is very easy to become negative. Parenting is a tough enough gig to start. Throw in cyclical vomiting, oculomotor apraxia, dysarthria, incontinence, tremors, and more big long words that we didn’t really understand in the beginning and it’s easy to get overwhelmed. Hang in there! You will learn them all and can do this!
So, wait, am I saying I am at peace? #$$%@^$ No! Gah! No, what I have learned is that a code word is needed with friends and family to let them know A-T is getting the best of me and that I may need a bit of grace, an extra hand, or to leave the room unexpectedly. After all, I don’t want Braden to see me crying over A-T. Not the way in which A-T makes me ugly cry. So, we get the sniffles over here. I’ve learned that sometimes you have to “do” and not “think.” I’ve learned organization is key where school and doctors are concerned. I’m thankful for every time my parents didn’t yell at me for questioning authority in a healthy way. If they hadn’t, I doubt I would be as capable of questioning doctors and administrators without fear. I have learned to embrace our family’s uniqueness. We have developed a twisted humor that most wouldn’t understand. We’ve also learned to seek out the happy and to do things now. You will get there.
We’ve learned that we don’t have to raise the next Harvard grad. We have to raise a child to be happy, as healthy as possible, and respectful. That’s somewhat liberating! We remember to take notes from those generations before us as well. Ask for things before you may need them as it will lay the foundation. Plan holidays and traditions now in preparation for how things will be. For example, move furniture now to be more handicap accessible later. Teach younger siblings to keep toys out of the main pathways so wheelchairs may go through them. Move Easter Egg hunts inside or have places outside where eggs are hidden at a height in which the child won’t have to stoop down. Start eating foods in fun ways that the kids will need later. We started drinking soup and other foods from coffee mugs. Spoons are really hard for our kids! We preemptively strike! This will eliminate “losses” when they can no longer to do these things. He didn’t use a spoon to eat soup! So, no loss. Just remember to not compare A-T kids. There are varying levels of both ability and health.
We’ve learned that when they say that your child will experience a rapid decline at age five they REALLY weren’t joking. That free fall lasted a year and a half. We’ve learned that it is terrifying and just how much of a team we need to be under this roof. We also learned how important counseling is. Take care of you so that you can take care of them. It’s the whole “Put your oxygen mask on first” philosophy. Stay as solid as you can in your marriage. A-T will expose every crack in your foundation! Know that you will most likely lose some friends. It will hurt. However, the friends that remain are the ones that deserve your respect. Learn to forgive those that walk away. It speaks more loudly of them than it does of you. Keep your chin up!
If you need a shoulder, please don’t hesitate to send me a message. I will listen. You are not alone.