Friday, January 21, 2011

Expecting the Unexpected

Oooohhh, its purple!!! You know what that means...

I found out in March of 2008 that we would be expecting a very unexpected addition to our family of two. Only having been dating for a year and a half, I thought, here we go! At first we were stunned, and then we were excited and giddy with joy.

We started the exciting life of OB appointments, baby registries and dreams for our child. I knew Kai would play soccer. And Daddy knew Camryn would be prom queen. At 17 weeks we got a phone call with the unexpected news that threatened our child would do neither of these things. A voice on the phone said, ‘I have the results of your integrated screening. And, oh my, I’m afraid the results aren’t good.’ I was told that our precious baby had a 1:5 chance of having Down syndrome and a 1:68 chance of having Trisomy 18. I felt ill. I fell to the floor sobbing, ‘Not my baby! Why my baby?’ I am only 34 years old. I thought the cut off for these kinds of things was 35 years old! We should be OK, this must be a mistake.

The next day we went to the OB and had an amniocentesis. We chose to have the amnio because Trisomy 18 is fatal. Then we waited for ten long days. By then, Daddy had convinced me that our baby had neither of these things and would be perfect. By then, I believed him. But I told him that Down syndrome would be OK, because our baby would live. I could handle Down syndrome.
Then the call came. Daddy went into another room and I reminded him to find out the sex of the baby. He was gone for a long time. I knew. I just knew that our baby had Trisomy 18 and more than likely would not live to see his/her 1st birthday. I was paralyzed when he walked out of the room with tears in his eyes. And he said to me, ‘Well, we got our little boy. And…he has Trisomy 21.’ As he collapsed into a heap of tears it took me a moment to realize that yes, I had heard Trisomy, but not 18, it was 21! I ran to him and told him it was OK, we would be OK, our SON would be OK.
Reality did set in later that day. And I was sad, angry and devastated. I was sure he would not play soccer and he would not go to college. I was so sure of a lot of things that he would never do. I asked Daddy was it wrong I wanted to change his name because Kai wasn’t a boy with Down syndrome. He said that was OK. We had a decision to make. We could raise a child with Down syndrome, but did we want to? I got my answer the next day at our first level II ultrasound. There was my son, my Kai, at 18 weeks, spinning in circles and dancing all around inside his mommy’s tummy. He was sucking his thumb. He was kicking. He was being a BABY. We looked into each other’s eyes at that moment and knew we had our answer. We could and we would raise a child with Down syndrome.
At 21 weeks we were given more unexpected news. Kai had a heart defect called an AV Canal, the most common heart defect found in babies with Down syndrome. It felt like another heart wrenching setback. And I told myself that we had better start expecting the unexpected with this baby boy. We were assured that this was easily fixed and he would be out on the playground with all the other kids. I started researching Down syndrome. The mistake I made was that I was researching all the health issues and developmental delays that our son could have. I was sad. Then I found the Down syndrome pregnancy board and Down syndrome board on and my eyes were opened to a whole beautiful, promising life I didn’t know was possible. I heard about and read the book, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. I learned that my sadness was OK. I also learned to be happy and excited again. The turning point was when I realized my dreams for my son weren’t gone, they were just different, no better, now worse, just different.
The day came for him to be here. We went to the hospital. He was born without incident and was the most beautiful baby I had ever laid my eyes on. And his Daddy was right, Kai was perfect. He looks just like his Daddy. I have never fallen in love so completely and so quickly with another person. We had a short stay of 10 days in the NICU because of an infection(not related to Down syndrome) and then we came home. I fell in love all over again. He was just like any other baby, except he was much cuter.
Kai had his heart repaired at 10 weeks of age and we came home 8 days later. We have a few extra doctors’ appointments and we have occupational therapy every other week. I was told to expect delays with motor skills and eating and low muscle tone. But so far, we haven’t seen any of those delays. I know eventually we will have some delays, but I have also learned to expect the unexpected.
Kai is the joy and the light of our lives. His smile is infectious. Strangers walk up and talk to him all the time. We could not have been more blessed. We could not have been luckier. Our son could have had Trisomy 18 and our story would have been one of loss and sorrow. Instead we were lucky that he has Down syndrome and our journey with him has just begun. I can say today that I would not change a thing about my son, he is perfection.

1 comment:

  1. Love it, again. And, sometimes the out some of a child being born with T18 is also an unknown thing. River is in preschool with a little boy who has it, and I am head-over-heels in love with that boy. He walks with a miniature walker, drinks from a straw, self feeds with a fork, waves, smiles, and charms your socks off. His mom and I compare notes all the time, and the emotions definately hit me thinking that there is no definates about his time line, or life in general, but I keep thinking what a blessing it is to know him right now, because he has changed my heart. I love that boy.