Just by his smile, everybody knows our beautiful two year old son Aaron, or as we call him, our Ace. He’s the light of our lives (as most children are to their parents–but we like to think he’s got an unusual glow about him)! As soon as you meet him, it’s pretty easy to see he is a happy kid, one who is always quick to give a cheesy smile and ready to charm anyone almost instantly. He is unique. We didn’t realize just how unique until recently when we learned Aaron has a rare deletion on chromosome 8.
We were told that there is no one in the genome database with the same deletion as Aaron which, from what we have read, can be typical for these rare situations. We are fortunate to have doctors that have monitored a couple of things that were medically “off” when Aaron was born, even if they weren’t causing a problem (dilated right kidney and coloboma, for example).
We reached out to Early Intervention through our state when Aaron still wasn’t walking at 18 months. We are incredibly proud and incredibly thankful for the awesome team of people who support him, including family, friends and therapists. We have seen numerous doctors, including a neurologist, ENT and developmental pediatrician. Our adventure with Ace lead us to the department of genetics where they confirmed that Aaron’s chromosome deletion is the reason for his delays. Even the experts know very little, and while that can be frustrating to hear, it also helps us set no limits. As we told family and friends recently, there is no clear path, so we will just let Aaron show us the way.
My advice to other parents is to have perseverance, follow your gut and—when all else fails—let your child be your guide. If we hadn’t followed our gut and kept asking questions, we may have never found out about Aaron’s deletion. Make sure you have a supportive pediatrician that listens to your concerns. Sometimes you have to go through multiple tests and/or doctors in order to cross things OFF the list—which sometimes is more important! Answers don’t come easily in rare situations, so you have to pursue them.
My biggest piece of advice though would be to welcome any and all support from organizations/individuals that can support any special needs your child has—however big or small—then set limits for yourself. I think it’s natural to want to learn everything you possibly can about any case remotely similar to yours. It’s worth doing the research and joining the support groups because you can find another parent to connect with who just “gets it” even if he/she isn’t dealing with the exact same diagnosis. I am incredibly grateful for these people in my life!
When I focus on milestone charts, what my son should be doing or what a typical two year old is like, I lose sight of all the things that Aaron is doing and who HE is. So don’t forget to just let your kid be a kid, and allow yourself to just be Mom (or Dad). I now realize that sometimes the most important thing you can do for yourself (and your kid) is to give yourself a break now and then.