Most people don't know Nicholas is a Rainbow Baby. I was young and in school when I was pregnant with him and I have always been seen as the "good girl" so most people can't imagine me getting pregnant before Nicholas. No one knew about my first other than one of my roommates and her boyfriend, who drove me to the hospital that frightening night. But before Nicholas there was another that didn't make it. So when I found out I was pregnant with Nicholas I wanted to keep it quiet until after that first uncertain trimester. But as fate would have it there were issues from the beginning and at about 6 weeks I was told he had a "marker" for down syndrome. I felt I had to prepare my family for this "tragic" posibility*. That marker, and a new one, were present at a second ultrasound at 12 weeks. Two separate screening blood tests confirmed it. Fortunately, they were all wrong and Nicholas does not have down syndrome.
Rewind about two years before the year I was pregnant with Nicholas, back to 2005. I made a trip up to Hollywood, like I did every so often, and went by the Pantegeous Theatre. Wicked was playing and I remember seeing the signs in front of the theatre and wishing to be able to see it some day. As a full time student I did not have the money for a ticket but someday! I checked out the CD from my university library and copied it on to my computer and fell in love.
Back to 2007 with doctors and genetic counsellors telling me to prepare for a child with down syndrome. I did the research and cried. A lot. My baby would likely be born with complications. My baby would likely need heart surgery. And while success rates were good, they weren't 100% and that was terrifying. I thought this could be why the first one didn't make it. Maybe this one would die too. One day, as I was doing my research (I did this often, looking for something that could give me some hope), I had the music on my computer playign in random. "Defying Gravity" started playing and it hit me. I cried. Again. I put it on repeat and listened to it for who knows how long. "You will defy gravity" I told my baby within me. I added it to the playlist of songs I played daily for my baby, and would continue to do so after he was born.
Life happend. So much life happened and that playlist disapeared when that computer died. By that time I had long stopped playing it. Life happened and so many hurdles distracted me from that playlist. Nicholas did not have down syndrome, he was pefectly normal and healthy and that was all that mattered at that point. I listened to Wicked from time to time and remembered that uncertain time, so many things have always reminded me of that uncertain time, but nothing more.
Today.
I am playing a playlist of Broadway music, so many good songs on it. "Defying Gravity" plays and Nicholas looks up from his Legos trying to concentrate on the song. He goes back to playing. Then she sings "It's time to try defying gravity, I think I'll try defying gravity," and he looks up and says "This song reminds me of something..." My heart stopped and I said, "Yes, we used to listen to it a long time ago." He smiled and went back to his Legos.
And I realized he has been "Defying Gravity" his whole life.
For whatever reason everything showed he had down syndrome while I was pregnant until they did an echocardiogram at 24 weeks. His heart was perfect. All the ultrasounds after that were normal though they kept telling us to be only cautiously optimistic. He was born without a sign of down syndrome and that's when he took flight.
The first sign that something could be wrong was when he was small and we'd call his name but he wouldn't respond. His hearing was tested and he was fine. For years he wouldn't respond when we'd call his name. He now responds to his name most of the time, even if it's just a "huh?"
There was a time that making him stop playing with his trains (and later Legos too) would result in a huge tantrum. I had to learn how to prepare him for transitions and it was hard for him. Our timer got used a lot more for signaling warnings of transitions than for cooking. He still doesn't just happily clean up when he is told to but it is no longer because of difficulty with transitions. Giving him warnings and having a set time for clean up has eliminated that. Now it's more he rather keep playing than get ready for bed and stall tacktics, but I think these are more age appropriate.
Like so many kids on the spectrum, he knew his alphabet forwards and backwards and the sounds they made before 3. But then he lost it all. Now he has trouble with the alphabet and for a while I thought he would take years to learn to read. Nope. He can read now, even if it is two full grade levels behind where he should be.
He has gotten better with food. He spent years living off a very limited menu and pediasure. He will now try new foods. He doesn't like most of it and sometimes he'll fixate on a specific food that he previously liked and now says he doesn't. But he eats.
I could keep going and going, he has made so many improvements. There have been and continue to be so many things that hold him back but he continues to improve, he continues to defy gravity! This is something I struggle to remember. Our days are full of behaviours and difficulties that need addressing that it is so easy to forget where we started and how far he has come.
I will be adding "Defying Gravity" to my computer and all my listening devices. I need this reminder more often.
*I was 21 when I was pregnant with Nicholas. I was young and naïve and did not understand down syndrome. After all that research I learned they are not a tragedy and prepared myself to welcome a child with down syndrome into my life.
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