Wednesday, March 21, 2012

World Down Syndrome Day 2012

Today (3/21) is World Down Syndrome Day. It is celebrated today because of the symbolism of 3/21 - three copies of the 21st chromosome is what causes Down Syndrome.

Down Syndrome is something that is on my mind pretty much every day, but I realize for most people it is not. For that reason, I think days like today are so important. It's one more opportunity to share with the world that Down Syndrome is not a horrible disease and the people who have it don't need to be hidden away in institutions.

The best way that I know how to raise awareness is to share our story. So, even if you have heard it before, I hope you'll take the chance to read it again.

When I was pregnant with Aaron, I had no idea there was anything "wrong". I had all of the testing recommended by my OB (including what was then called the quad screen - which gives you "odds" that your baby will have a genetic abnormality) and everything came back normal. We had several ultrasounds which never showed anything unusual. I have always been a big advocate of having as much information as I can so I will be as prepared as possible. I would never have chosen to terminate my pregnancy if we had known beforehand, I just wanted to know, so I would have time to prepare. But, apparently that wasn't part of God's plan for us.

As it turns out, no one knew that Aaron had Down Syndrome when he was born. My blood pressure went up when I was about 38 weeks and my doctor decided it was best to induce me. I went to the hospital the night before the induction and ended up going into labor before they could start. Labor progressed quickly - so quickly that Matt only made it to the hospital about 20 minutes before Aaron was born and our doctor didn't make it at all. I also didn't have time for an epidural. I never thought I'd be able to give birth naturally, but I did it and I still consider it one of my biggest accomplishments. So a random doctor that happened to be in the hallway delivered Aaron. Everything was fine and we were perfectly delighted with our new little boy.

I have read a lot of stories from people whose children were diagnosed at birth and most of them talk about how all of the nurses and doctors get really quiet and start whispering in the delivery room as soon as the baby is born. It's usually pretty obvious to the medical professionals when a baby is born with Down Syndrome. But that isn't part of our story either. There were A LOT of nurses in our room when Aaron was born but that was because he came so quickly and there wasn't a doctor there until the very end. None of them seemed concerned after he was born. Nobody rushed him out of the room or whispered to each other or looked at us with concern on their faces. No one mentioned Down Syndrome until later that night (he was born around 6 in the morning).

Not long after Aaron was born we were taken up to our post-partum room at Northside Hospital. When the Pediatrician came in to see us that night he is the one that completely flipped our world upside down. It was a doctor we didn't know. Northside has Pediatricians on staff that see the babies and then send their reports to whatever Pediatrician you choose to use once your baby leaves the hospital. So it was this doctor who we had never seen before that walked into our room and told us there might be something wrong with our son. I don't remember a lot of the details of what he said. I felt like someone had shot me when he said he wanted to have Aaron tested for Down Syndrome. I am a nurse - a Pediatric Nurse at that - but I didn't know much about Down Syndrome. I knew that most kids with Down Syndrome were treated badly (by other kids) and kept away from the other students at school when I was growing up and that was enough to make me fear it for my child. So here I am on what should be one of the happiest days of my life (and had been up until that point) with a doctor telling me that my child may have a disability. I think I remember him saying something like "he doesn't have a lot of the features, but I think I want the geneticist to come see him and see what he thinks. I don't think he has it, but let's be sure." It was enough to scare us but we clung to the belief that he thought Aaron didn't have DS. The next morning (at least I think it was the next morning - everything runs together after that Pediatrician came to see us) the geneticist came in to see us. He checked Aaron thoroughly and told us a lot of information about Down Syndrome that I couldn't process at the time and gave us a packet to take home about it. He told us he was on the fence about whether or not Aaron had it and that wasn't typical for him. He had seen thousands of babies and he usually knew one way or the other. Aaron didn't have a lot of the typical features of a baby with DS and to me he just looked like a baby. MY baby.

Getting a diagnosis was as "simple" as a blood test and they said it would be prioritized since he had already been born (meaning it would be looked at ahead of those that were from amnio tests). Of course, since nothing is ever simple for us, they sent the sample to the wrong lab - it went to New York instead of Florida - and it took a week and a half to get the results instead of just a few days. Needless to say, it was the longest week and a half of my life. When we finally got the results and our worst fear was confirmed, I was upset, but not as devastated as I thought I would be. I think by the time we got the official results, we already knew what they would say. That's not to say I wasn't upset. I cried a lot for the first few months of Aaron's life. Friends and family sent congratulations and condolences. It was a very surreal feeling and range of emotions. I wanted to be happy about my new son. And I was. I never had a problem bonding with him and I fought tirelessly to get him everything he needed. Nursing him was VERY difficult, but I was determined and after about two months of trying to nurse, pumping and bottle feeding, he finally got it. Another huge accomplishment for both of us.

The emotions we felt during those first few months are difficult to describe and impossible to understand unless you have experienced it. I gave birth to a beautiful baby boy, but the diagnosis that came shortly afterwards stole from me the child that I thought I would have. We all have hopes and dreams for our children. They typically start before our kids are born. We dream of what they will do, what they will look like and the people they will become. We dream of what their interests will be, the friends they will have, the college they will go to. When Aaron was diagnosed with Down Syndrome, those dreams were shattered. Although I didn't lose my son, I lost the son I thought I would have. And although it seems crazy to anyone who hasn't gone through it, it was a very real grief, one that I probably won't ever fully recover from.

In the three and a half years since Aaron was born, I have changed. I look at the world differently, I look at people differently and I look at myself differently. Although I was utterly shattered when Aaron was diagnosed, I have come out of it thankful for many things. I am thankful that I have already accepted that my children probably won't be the people I dreamed they would be and that's okay. Whatever they do and whoever they are is okay with me, I will love them no matter what.  I am thankful that I have the opportunity to really enjoy and appreciate every accomplishment that Aaron has. They are so much sweeter when you see how hard your kids work at them. I am thankful for the love that Aaron has already spread through the world. He blows kisses and gives hugs to pretty much everyone he meets. His smile lights up any room he is in. The joy and love that radiates from him is unbelievable and unmatched in anyone I have ever met. He may learn more slowly and have to work harder to do things that you and I take for granted, but that doesn't make him less of a person or any less valuable than the rest of us. Down Syndrome is not the devastating condition that I thought it was three and a half years ago. I think if we could all slow down a little and take the time to learn something from the people in this world with DS, we would all be better off.


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  2. Thank you for this poignant post, Kristi. Even though we were alongside you during those first months, it is good to read it from your perspective. It's such a great reminder that the individual stories that we connect to help raise awareness for us all. I love reading your reflection of the entire experience. It has been a tough road for you (could that BE more of an understatement??), but you handle it with grace. Love to you and your family!