Last night while Jillian was at a birthday party, the three of us made a trip to the grocery store. We marveled at how easy it was to shop with just one child, instead of two, but without Jillian there to add in some normal, we became a bit more vulnerable. While in the check-out line the cashier made several comments about how handsome Mark was. This exchange would most certainly not occur if my limelight starved daughter was there. In response, we smiled and said that we agreed. She looked over and corrected the potentially autistic boy bagging our groceries, and then she pressed on by saying that Mark was going to grow up to be a heart breaker. And all of a sudden an ordinary exchange turned into a moment that made us stop in the midst of the routine and take inventory of where we were. As we left the store Ike made the comment that instead of being a heart breaker he may be the boy trying to bag our groceries.
The thing is, I don’t know what Mark will grow up to be or do, and I don’t think about it. Not because it’s painful to think of him being unable to function independently, or unable to have a more complex job than a grocery bagger, but because I can’t see it. When I think about his future, I can’t make it past the mountains in front of us, like learning to use a fork, putting on his own coat or coloring with a crayon. I’ve also never been good at looking into the future and picturing how things would look. As a kid I never knew what I wanted to be when I grew up, and as an adult who recently went through the home building process, I struggled with picturing how things would be. And I think for me, it’s safer that way.
Mark is beautiful, outside and in. Each time I have to fill out a survey or evaluation for treatment or therapy, it will ask about his strengths or inquire about his demeanor. And every time I write words like “happy”, “joyful”, “smiley”, “content” and “full of laughter”, because he is all of those things. And on these surveys I feel somewhat victorious when I get to select “never” to questions about common autistic tendencies. He doesn’t line up toys, avoid eye contact or make wheels spin on his cars. He does run around with a toy shopping cart squealing with delight, brings us books to read, and he stands on his trampoline saying “go!” to entice us to come over to make it bounce because he can’t figure out how to jump himself. As I type this, he’s absolutely delighted with the fact that he was able to successfully shove his toy mower up on top of the island in our kitchen. He’s peaceful and content, and loves it when we hold him. In fact, he’s now curled up in my lap gently fiddling with the fabric on my knees.
Yet with the good, comes all of the challenges. Mark can’t sit still, doesn’t understand most of what we say, can’t point, clap or wave, and struggles with learning every new skill. When he successfully learned how to travene stairs, we were overjoyed. Everything is hard. And as much as I don’t want to change my beautiful boy, the things he will need to learn in the coming years will be significantly more complex and challenging compared to drinking from a sippy cup and learning to go up and down stairs. I do dream that it would be easier for him someday.
I’m optimistic about his future, and not because we pour countless hours of intervention into him but because we are in an age where genetic discovery is moving at lightening speed. Current science fuels my blind optimism. It took us almost all of 2015 to figure out what was going on with Mark, and after one blood draw at the KKI genetics department, and four months of sequencing in a lab, a report returned telling us the very answer we had been seeking. We found the problem. And now in 2016, and every year following, it will be my mission to fix it. Because now that we have identified the genetic mutation we are that much closer to identifying a way to fix it or at least tailor treatments based on his genetic profile. The testing Mark underwent only became available as a diagnostic tool in late 2011. Five years later families around the world are identifying exactly what went “wrong” and researchers are working diligently to determine gene therapy methods and ways to eventually repair the gene. And that is why I will fund raise, research and put my heart into advancing toward a cure. I hope to someday eliminate the fear of seizures, developmental regression, motor dysfunction and potentially degenerative effects based on his mutation, so that one day, Mark can choose between being a heartbreaker or a bagger at the grocery store.
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11