You may have seen a few of my posts about October being Down Syndrome awareness month. To be honest before my son Cohen was born I had really know idea what the facts on Down Syndrome were , let alone that October was Down Syndrome awareness month. There are so many other worthy causes being showcased this month that it's hard to remember them all, and that's why I feel responsible for getting the word out there and at least informing my family, friends and all of you lovely people of the amazing things people with Down Syndrome are capable of.
Since Cohen's birth and the news of him being diagnosed with Trisomy 21 (more commonly known as Down Syndrome) we've had so many people lend their support and ask some really great questions not only about Cohen's birth story but about Down Syndrome in general. So I figured maybe I would kick off the re-vamping of my blog by telling Cohen's story and then following up for the rest of October with some facts to answer some of the more frequent questions I've been getting.
One of the questions I've gotten a lot, and I'm sure all mother's receive is "What did you think when you found out you were pregnant?" and to be honest I was so excited I don't think I was thinking of any one thing in particular. My brain kept flying from one thought to the other...."Will she or he be smart?", "Will he or she like sports?", "Will he or she, be a he or she?" haha. It was honestly a whirlwind of emotions. Of course as time went on I had the chance to think about absolutely everything, I mean ten months is a long time for a gal to spend in her head! My imagination really started to take hold after we were informed we were having a boy. I would try to imagine if he would have my eyes (that clearly didn't happen), and if he would enjoy our pets. I imagined his first day of school, his last day of school and even his wedding day. If I could give you a nickel for every thought I had about the lil' bean growing inside my stomach, you wouldn't be reading this right now, you'd be out spending the millions of nickels you just got out of me!
As the weeks grew nearer to my due date, I got even more anxious to meet my lil' guy. Going to all of my doctor's appointments and ultrasounds was like a tease. Jordan and I would look at the ultrasound monitor and just gawk at how perfect our son was. From what the doctor's and us could see from all the blood testing and ultrasound photos we had a perfectly healthy little boy on the way. We were surprised that just two days after my last doctor's checkup (38weeks along) I went into labour!
Finally! At last! He's coming!.......Wait a sec, he's coming...right now!? Crazy how sometimes you can fool yourself into thinking your "ready" to be a parent. Haha silly me.
All of those questions I had asked myself, my doctor and anyone else who would listen quickly came flooding back to me. "Will he have all his finger's and toes?", "Will the delivery go smoothly?", and any other possible question you could ask was running through my head. I do admit at this point one of the bigger questions for me was "When can I get the epidural!?" haha but you can understand why.
A short fifteen hours later my sweet, sweet boy was born. 5 pounds 14 ounces and 18 inches long, there he was. Perfection.
After everything was all said and done both Cohen and I were completely exhausted. The nurses needed to take him to get cleaned up and all that jazz so I was able to catch a very much needed and well deserved (if i do say so myself) nap. I can't recall how long it was I slept until I just barely opened my eyes and saw Cohen's pediatrician standing over me. Due to the effects of the drugs from the delivery and the lack of sleep, this moment still feels like a dream to me when I look back on it. I know Jordan was sitting next to my bed, and thank goodness he was because the words I was about to hear were ones that I couldn't handle on my own.
"Hi there, I'm Dr. James. I will be Cohen's pediatrician."
She paused and looked at me for a minute. I think she could sense I wasn't fully awake and waited for me to re-gain my focus.
"We need permission to do some blood testing on your son. It seems he has some features that are consistent with Trisomy 21, or as you may know it, Down Syndrome."
I Don't know why I was so surprised she was so straight forward and to the point, I noticed over the course of my pregnancy that the bed side manner here is, well, a little lack lustre to say the least. So you'd think I wouldn't have been shocked when she simply turned around and just walked out the door.
Now I really was dreaming. Did she just say what I think she said? Not only was my my son diagnosed with something I knew absolutely nothing about, but I was left with no answers, or even a chance to ask questions.
I remember looking at Jordan and not being able to speak or the the whole damn of tears I had been storing while Dr.James dropped that big bomb on us would let loose, and I simply may never be able to stop them.
Because Cohen was also born with Jaundice we had to stay a couple nights in the hospital for him to sit under special lights. He looked like he was in a mini tanning bed, goggles and all. It's a really heavy feeling looking at your newborn who is already so vulnerable and seeing them in a situation where theres nothing you can do to help. My heart broke a little every time I looked at him.
(Taken on my iPhone)
The day we were released from the Hospital was a very exciting and happy day for us. Not only had the Jaundice gone down and we were free to leave but, Dr.James came for one last check in and proceeded to tell me ........."I'm almost positive he doesn't have Down Syndrome. The physical signs aren't really there but we have to be sure so the testing is necessary."
In all honesty after her first sentence I tuned out. I had been worrying for nothing. Everything was going to be fine. They just wanted to rule it out 100%
I'm not sure if she was being honest or trying to make me feel better but at that moment I took it. False hope or not, it was something to hold on to. Looking back on it now I wish she had kept her mouth shut.
We didn't end up sharing the news of Cohen's possible diagnosis with anyone other than our parents. I mean why worry them. Instead we sat on the news for the longest three weeks of our lives, why make everybody else feel the torture we felt. Besides as the doc said she was "almost positive" the results would be negative so we had nothing to worry about.
The closer it came to the three weeks being up the more confident I felt that we were in the clear. Then all of the sudden I'd have these moment where I'd look at Cohen and feel as if I knew I was kidding myself and we were going to have a rude awakening in the matter of days.
All I can see is tail lights and traffic. Our appointment with the pediatrician standing in while Dr.James is away is a morning one so naturally we are stuck in bumper to bumper traffic. I don't mind. I almost welcome it, considering what we could possibly be facing a little more time with things as they are was fine with me.
As in most medical offices, the wait for our time with the doctor was long and particularly torturous this morning. When we were finally called Jordan and I were so nervous. We walked down the never ending hallway to the coldest most clinical looking exam room you could imagine. After waiting yet another lengthy period of time our acting pediatrician walked in. After the introductions the doctor got right into the thick of things.
"So the test results came back, and they were positive for Trisomy 21"
My heart shatters.
All I hear now is white noise and my tears are coming so fast I swear I can hear them hitting the floor with loud pangs like rain pounding on a tin roof.
All I remember from that point on is walking back down the never ending hallway, past the reception desk, past all the people staring at me in the waiting room and calling my mom as soon as I walked out the door.
It was super busy in the parking lot so between the hustle and bustle and my sobbing my mom could barely make out a word no matter how many times I repeated myself. I was getting frustrated and just started yelling in the phone over and over again "Cohen has Down Syndrome", "My son has Down syndrome." Saying the words and not believing them as they were being forced out of my mouth.
I could hear my mom crying on the other end. The next 10 phone calls weren't any easier.
When we finally got home and we had had time to realize we weren't dreaming and this was reality, our reality, I broke down. I just had the most beautiful baby boy and instead of celebrating his life I felt like I was mourning it. In the ten months of thinking about what my sons life would be I never once thought of something like this happening to me. I mean I thought about it, but not in a million years did I ever think it would actually happen. The rest of the day I cried so much I could barely open my eyes. If it weren't for Jordan and his complete confidence and amazing positivity I'm not sure I would have seen the light. He finally calmed me down to where I could take what everyone was telling me and really absorb it.
We just had to get the facts, research as much as possible and tackle this all together. I took that one day to break down and then decided the next day I would need to pick myself back up and face it.
I would never ever want Cohen to think I was sad or disappointed about the way he is.
Now that I know all that I do about Trisomy 21 I know I was freaking out because I had no knowledge of the cards we'd been dealt. I had no idea what Down Syndrome really was, apart from what I had seen on tv or movies. I had grown up with students in my school who had Down Syndrome, but I didn't know any of the things that they may have needed to over come or any of the things that they excelled at. I just remember them being happy, friendly and completely unique to their own personalities. That's when it clicked for me. We have more in common with those who have Down Syndrome than we do differences.
Since Cohen's birth he has seen specialists for his heart, eyes, and ears. His blood tests have come back with good news on his thyroid and everything else that was checked out. You can imagine how completely elated we were every time we heard good news. All of the tests were very important as all things I mentioned can be problematic for those with Down Syndrome. Also I was so happy with the treatment we got after travelling to Edmonton I shed a tear or two. Dr.Lewis (our new pediatrician) made me feel much better. She assured me that it was nothing I had done, it happens during conception and is completely random. I had also read that there is quite a small chance of survival for babies (up to 80% says About.com) in pregnancies where the mother is carrying a child with Down Syndrome. Hearing that I was so glad I hadn't known about the diagnosis during my pregnancy as I would have worried twice as much and that alone can be harmful for your baby. That fact also proved to me that he really was a miracle and is so very special.
After 14 weeks of good news, bad news, good news and lots and lots of research, I can confidently tell you I have never been happier in my life. I mean I'm so happy I could bust. I have an amazingly adorable, healthy little boy and he has changed our lives for the absolute better.
This is Cohen.
He has an extra copy of his 21st chromosome.
He is a very happy healthy normal lil' boy.
He likes car rides, milk and his pets.
Cohen is laid back and smiles constantly.
He loves his mom & dad and snuggling with them every chance he gets.
He is not "suffering" or "sick".
He has Trisomy 21 but that's not what makes him who he is.
Thanks so much for reading our story. I know it was a longer read than my usual blogs (when they do get posted) but I felt it was really important to share, not only in honor of Down Syndrome awareness month but in honor of my son. My angel, Cohen.
