October is Down syndrome awareness month. I didn’t even know this existed a year ago because I honestly didn’t know much about Down syndrome back then. But I do now because of my amazing son, Ryan. Ryan was born in October so you would think that I would have actually known about this last October, but our introduction into the DS world wasn’t as simple as all of that. You see we went four months without even knowing that Ryan had Down syndrome. Weird, right? Let me rewind…
Ryan was born on Saturday, October 14th at 1:18 am. He was a perfect 7 lbs 2 oz and 20 inches long. He was 11 days early but came into the world without any problems. We were immediately in love and cherished every minute with him. He didn’t have any health issues besides having to have a hearing test (which he passed) when he was a few months old because he didn’t pass the one at the hospital. He was a pretty easy going baby who was a great sleeper and hit his milestones either early or on time. Fast forward to our 4 month doctor’s appointment…
The Doctor’s Appointment
We go to a practice that has several pediatricians and this was our first time seeing this particular one. Everything was going great…his heart sounded good, his lungs sounded good, he was babbling for the doctor…until she excused herself to use the bathroom. She was gone for quite a while, which I thought was weird but didn’t really think much more of it at the time. When she came back she said, “does he always stick his tongue out like that”. I said “yes, he does stick his tongue out a lot, but he’s doing it less than he used to.” Then she very casually said, “I think we may need to get him tested for Down syndrome.” I felt my heart fall to my stomach and needed to sit down so that I didn’t drop Ryan. She went on, “let me explain. He has almond shaped eyes and sticks his tongue out which are both characteristics of Down syndrome. He doesn’t have many other traits and I feel in my heart that he doesn’t have it, but I think it’s something we need to get checked out to know for sure”. I was at the appointment alone and immediately called my mom when I got in the car. I’m not sure she could understand much through my tears but she definitely heard the words “Down syndrome”. She eventually calmed me down and we made it home, where she met me to calm me down even more. My husband, who was at work, kept texting me about the appointment and how it went so I told him to call me when he got a chance. We spoke and he left work right away so that we could take Ryan to get the blood test.
The results of the blood test took a week to come back and it was the longest week of my life. I tried to stay away from Google, but obviously gave in and looked at a few things. I spent the week staring at Ryan and going back and forth from “there’s no way in hell he has this” to “okay, maybe I see it”. I think throughout the week I eventually came to terms with the fact that he really might have it, which made the phone call slightly easier. It was a Friday and the doctor called at 7:00 at night. She told me that he does have Down syndrome and some other things that I honestly don’t remember now. When I hung up I told my husband and we took turns crying and comforting each other. At one point we were both crying and Ryan, who was on his tummy, looked at us, smiled, and rolled over (the first time he had done that since he was tiny). I think it was his way of saying, “I’m good, what’s wrong with you guys!?”
The Journey (so far)
The next couple of weeks were a blur. We had to tell all of our friends and family and we had to sort through our own emotions. As much as I love my baby and knew we were all going to be okay there was still a little bit of grieving to do. Grieving for the future, really. The plans I had already made for him in my mind that will now look a little different.
We also had to follow up with the doctor and get him into several other specialists. He had to see a cardiologist—even though his heart had always sounded fine, heart problems are very common in babies with DS so he needed an EKG and an echocardiogram to be sure. We also got an appointment with an ophthalmologist (because vision problems are also common) and have to see a pediatric dentist by the time he is 1 to try to help with any dental issues. He also had to go get his blood drawn to check for several different things (which he’ll have to do every year for the rest of his life) and we made an appointment to see a genetic specialist. On top of those, I had to get in touch with our school district to start with Early On (a special education program for children birth through 3). So far all of the appointments have gone great and we love the Occupational and Physical Therapist who come to our house each week through Early On.
So why am I telling you this long winded story? For several reasons, really. One, if you have been reading this blog or looking at our Facebook page, you have seen Ryan a lot. Along with seeing him I wanted you to get to “meet” him too. Second, since it is Down syndrome awareness month, I wanted to make everyone AWARE. This is what Down syndrome looks like for us. This is our story and from what we’ve learned it’s not a very common one. Finally, and most importantly, if telling our story helps even one other family going through the same thing it is worth it. Obviously Down syndrome has changed our family, but for the BETTER. It was definitely hard when we first found out and we know that there will be bumps along the way but Ryan is an amazing little boy who has a very “normal” life. He does the same things as other babies his age, he just does them a little later and has a few more appointments to go to. We know we were chosen to be his parents for a reason, and we will fight to get him everything he needs to succeed in life. Trust me, he’s worth it!