The Lonely Side of Down Syndrome
If someone were to ask me what it is like to be the parent of a baby with Down Syndrome, I would compare it to riding the world’s fastest roller coaster with no seatbelt. There are highs, lows, head spinning spirals, but most of the time you are just going along hanging on for dear life.
I realize that this seems absolutely crazy for most people to hear, but I tend to forget, in a sense, that Ace has DS. You see, after a while, I sometimes don’t even see it when I look at him. To me, he looks like any other baby and most days our family feels like any other family.
But we are not any other family. We are different. No matter how much I may forget and view us through my rose colored glasses, there are days that the real world comes crashing down and I am reminded just how different we are.
The truth is that sometimes I get envious when I see your 7 month old baby sitting up all by himself and my 9 month old still isn’t able to.
The truth is my head starts spinning when I call Ace’s name 3 times and he still doesn’t turn his head to respond to me. My mind immediately goes to all the things that could be wrong and within seconds I’m googling Down Syndrome + Autism or Down Syndrome + Brain Development and then it’s down a dark hole of “what if’s” that may never even be true.
The truth is I get totally overwhelmed when I’m preparing for my baby’s 4th surgical procedure in 9 months and trying to make sure I have coordinated with his four different therapists to reschedule anything he may miss. I long for the days that I didn’t need a planner just to try to keep up with all of the therapies and doctor appointments.
The truth is that I don’t feel like changing my shirt for the 3rd time in 15 minutes because he just spit up all over me again because even after spending 2 weeks in the hospital, having 2 surgical procedures, undergoing 3 swallow studies, having his very own feeding team of specialists, and still not even being on solid food, Ace is still struggling with keeping formula down.
And the hardest truth of them all is that I’m tired. I’m tired of smiling and telling everyone how everything is going great because the truth is having a baby with DS is lonely. No one can understand your life and you realize this. So rather than be a Debbie Downer, you fight those tears, put a smile on, and keep moving forward and just hope that the next roller coaster high is coming soon.
Please understand that everyday is not like this. These are the lows. We also have highs that the average family doesn’t get to experience either. We get to live with these angels of Earth loving us day in and out. For that alone, we are blessed beyond anyone. Just know that the next time you see that smiling mom with a child who has DS, behind that smile is most likely a lot more going on than you could imagine. #ThisIsDownSyndrome