When I found out Exton had Down syndrome, well I’d be lying if I said I wasn’t shocked! His diagnosis was confirmed when he was a few weeks old and we had no clue during my pregnancy! So “shocked” really was the best way to describe it. I didn’t know much about Down syndrome, so I was such a mess trying to find guidance about it all. Unfortunately for us, we really didn’t even have time to enjoy and embrace our new knowledge because Exton was also born with a very severe heart defect, which was the only thing I could focus on at the time!

By 4 weeks old, Exton’s health was so far declined we were transferred to Children’s of Alabama and it was there that we realized how severe Exton’s heart defect really was. Exton ended up having open heart surgery at 6 weeks old, barely weighing 4 lbs! It was an intense couple of weeks recovering after open heart surgery. Exton actually stopped breathing at home with me and was completely unresponsive and I had to give him CPR only weeks after his open heart surgery. I always expected to wear a lot of different hats being a momma, but a nurse was never what I imagined!

Exton was rushed back to the hospital and once there, we found out he had a very severe case of tracheomalacia (which basically means a floppy airway) and Exton’s case was severe enough for him to need to have a trach and placed on a ventilator! His body needed more support than we expected, so Exton qualified for the home ventilator program. When we finally brought our baby home, we brought him home on a form of life support and a feeding tube. That first year was a year of survival and I like to think that every year since has been about living our lives to the fullest with whatever God gives us! So here we are - this crazy vent kid family just navigating our way through diagnosis and medical equipment!

I remember praying to God one night in the hospital to let me keep Exton any way I could have him and that as long as he fought, so would I. To say I feel blessed is an understatement because we are literally living our answered prayers and what’s not awesome about that?!? Exton made us a special needs family and I’ll forever be grateful to him for that. His journey changed our entire family for the better and continues to do so daily! 

What I wish people knew about Exton and Down syndrome/ventilator dependent diagnosis is that he is not breakable and he would rather you come up to him and say hi more than anything else! This little boy is the biggest social butterfly I’ve ever seen! And a flirt, boy, oh boy is he a flirt! I wish I could urge people to just see the cute child and not all the medical equipment and any other differences he may have at first glance…just see the cute red head that wants you to wave at him! 

Exton is just like any other toddler - wild and super mischievous - but in a lot of ways, he has an old soul. Exton has a calmness to him that makes him seem like he is years older than he is. We constantly call him “Extra Exton” because he’s got it all - the extra chromosome, the extra equipment, and the extra sass! He is happiest having a dance party or just being the center of attention. It is super important to Exton that he is the center of attention all the time, so having a pesky little brother has really been a transition for him! Luckily, our second child, Gibson, is so wild and independent that he could care less if he is the center of attention!

They are widely different and I love the chaos they create together. My favorite line to say when people ask me about the difference between having a child with special needs and a typically developing child? I always reply, “Down syndrome is a piece of cake...now, second child syndrome, that’s the tricky one!” I joke, but it’s really no different to me they are unique children because they were going to have different needs either way!

Exton has taught us so much in his short, three years of life. I swear, that tiny extra chromosome is filled with pure happiness! He has taught me to find joy in all things, big, small and even situations where it’s hardest to find joy! Exton has taught me to rediscover that childlike innocence and wonder for everything around me all the time. He is my beacon for joy, always, and Gibson is our compass for adventure. Together, we are a misfit crew causing chaos everywhere we go all in the namesake of fun! 

To learn more about Exton and the Black family, follow along at @extra_exton on Instagram!