Normally, I'm able to associate music to situations in my life. The week after Michael's Down Syndrome diagnosis has no music because there is no sound, no lyric, no rhythm that can describe the darkness that came over me.
I like to describe myself as a scientist with a little creative sprinkled on top. Because I function with facts, I spent the first few days after the diagnosis reading...and reading far too much. I scheduled an appointment with a genetic counsellor so we could get a better understanding of what this condition means for parents. There was just so much information and my brain was spinning at 4000 km/s.
I spent my days weeping in the shower, tearing up with every feed and just feeling lost, angry, sad and confused. How the heck did we end up with this?!?!
The genetic counsellor was great and answered all of our questions. We had all this information and set off to Arabella for a weekend of rest. Or so I thought.
As Friday night drifted into the early hours of Saturday morning, I hit my breaking point. I was feeding Michael in the dark and thinking a few things at the same time: Why did God do this to us? What kind of god places such a burden on an innocent child doomed to spend life being different and incapable of independence? Wouldn't it just be better if he hadn't been born in the first place? How lonely is he going to feel when he learns he will never marry or have children? How are we going to cope with a special needs child? What happens to all our dreams for the future?
There were just a lot of thoughts and, at my lowest point, I detached emotionally from Michael. I looked at him and felt nothing. When I wasn't looking at him, I felt pain and a deep, deep sense of loss. I was in mourning because I felt I had been robbed of the son I had prayed for. Honestly, why did God give me what I wanted and, via an extra chromosome, not only take it away from me but also give me a whole new set of problems?
If you had seen me that night, you would've agreed that I really needed some psychological assistance at that point. The next morning, Trevor had the arduous task of bringing me back to life. He spent an hour sitting and talking with me trying to pull me out of a completely negative headspace. Eventually, he got it right and I slowly started returning to normal with a slightly more positive outlook.
I have to say that I'm only explaining my feelings. Trevor also went through a very difficult time for weeks after but I can't speak of what he felt. All I can put down here is my experience. It was awful. They say that receiving that diagnosis is exactly the same as losing someone you love and you do go through the stages of grief. I personally was mourning the loss of the future I hoped for, not only for myself and my family but also for Michael.
It took quite a while for me to make peace with that extra chromosome and what it means. The journey there had plenty of hiccups and, of course, I am still a bit heartbroken that Michael's path ahead isn't easy. I had many days where it felt like I was in a dream waiting to wake up or that I was standing inside someone else's life. But it is what it is and all we can do now is choose how we deal with it. Our friends and family have been incredible pillars of support and they're a big part of how we've been coping. I know Michael is loved and our job now is to help him reach his full potential...whatever that may be.
The day our life changed
At my 16 week check-up, my gynae started the appointment by expressing her displeasure with me. I was supposed to go for a blood test at 12 weeks which I forgot about and only had it done a week before my next appointment. The test indicated an increased risk of Down Syndrome.
Trevor and I were sent off to a specialist who couldn't make a conclusive diagnosis and we declined amniocentesis. The specialist felt that if we weren't going to terminate, there was no point in doing the amnio and risking a healthy child who showed no other indications of Trisomy 21 except for that one blood test.
For the rest of my pregnancy, my doctor checked for every marker and none showed up. I even had a 3D ultrasound on a shoot for work and that gynae who didn't know me remarked that the baby showed no signs of Trisomy 21. And so we all hoped and prayed everything was fine.
The day after Michael's birth, the paediatrician examined him thoroughly again and said he had some concerns. Michael didn't show enough of the physical characteristics for him to make a diagnosis and we all felt a blood test would answer everybody's question. For the next week, we were just a normal family with two children adjusting to life with a newborn.
And then the paediatrician asked to see us. He examined Michael yet again and, after that, we sat down and he delivered the news: Michael's blood test confirmed he has Trisomy 21.
I held my composure while he explained the situation to us and we listened to the information he provided. But, when we got into the car, the walls came down and so did the tears. I cried bitterly all through Michael's feed and most of that afternoon is a blur.
In just a few seconds, Michael's entire future was ripped from us. The boy I imagined playing soccer at school, giving me grief during high school, partying during his university days, getting married and having kids was gone. Those images were burnt in my mind and we were left with nothing but black.
Despite knowing there was a risk, nothing prepared us for the reality. And to make matters worse, Trevor had to rush off with Wren-Lee to the doctor as she was sick and steadily deteriorating. We were tired emotionally and physically and had to prepare ourselves for what was coming...
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