I’m a Control Freak, a Perfectionist! I admit it! I’ve always needed things to be done my way. I had what I considered to be the perfect life. A nice house, a great career, an amazing husband and a beautiful, perfect daughter. And if things weren’t perfect enough, the day before my 10 year wedding anniversary, I found out I was expecting Identical Twins. How PERFECT! How could I be so incredibly lucky?? How could I have been so blessed as to have been given TWO babies? Identical twins are so rare! I hit the jackpot! What an incredible gift!
The weeks following the initial ultrasound were pure bliss, that is, until an ultrasound at 12 weeks revealed that both babies could possibly have Down Syndrome. My heart sank. Surely this was a mistake. I wasn’t even 35 yet! Down Syndrome didn’t run in the family, I ate a very healthy organic diet, and I was a good person, dammit!!! A very nice person!! What horrible thing did I do to deserve to be punished in this way? Why was this happening to ME?
I knew what Down Syndrome was, and it wasn’t good! Some of the grocery baggers at the supermarket had it. I would greet them with a strained “Hello” feeling sorry for them. I’ve even seen some babies at the park with it. Those poor babies, I couldn’t even look at them, smile at them like I did with other babies in strollers because I knew their mothers would think I was doing it out of pity. Poor mothers. Down Syndrome was not good, at all! It was the worst thing that could possibly happen.
My husband and I decided to confirm the diagnosis via a new, highly accurate, non-invasive blood test. We waited two grueling weeks for the results. They came back positive for Ds. We were devastated. I cried, a lot. I cursed the heavens above for this cruel joke. How could I have been given such a beautiful gift, then have it turned into something so abnormal? What would our family say? What would our friends think? What would our babies look like? What would their futures be like? I thought of all the times I looked away from the “poor babies” with Ds and felt tremendous pity for their mothers. Now I was one of them. My perfect life was now soiled and imperfect.
I was in pain. I was mourning the loss of the children I thought I would have. I had no control over this! Seeking some sort of solace, I reached out to several Ds Pregnancy support groups on the internet. I posted my introduction, reluctant and shameful, ”Hi, I’m Venessa and my babies have Down Syndrome”. I expected condolences, virtual hugs, some advice for not bursting into tears in front of my daugher. Instead, hundreds of people responded with “CONGRATULATIONS!”. They all said nearly the same thing, that children with Ds are a blessing, they would change my life and the lives of the people around them in the most amazing and beautiful way. That they were perfection. “Perfection”, really?
I looked over the flood of photos they shared with me of their adorable little babies, their toddlers, teenagers, adult children, their beloved aunts, uncles and cousins, all with Down Syndrome. They were photographed on vacation, at school, at parties. Just like us, they were living normal lives. It all seemed so positive, no doom and gloom. In my research I found out that Ds is a chromosomal abnormality. It can happen to anyone, at any age, of any race, regardless of their diet or whether or not they were “a good person”.
Then I found a film on YouTube called Dakota’s Pride. The film depicted so many wonderful adults with Ds that were excelling in all areas of life! They were athletes, business owners, public speakers, newlyweds! They were just like anyone else! There was no reason to pity them, no reason to look away!
At the next ultrasound I watched my babies, now confirmed to be boys, bounce around, playfully pushing each other. I could see their little arms, legs, hands and feet. Their beautiful profiles. Their hearts, beating. My boys. I loved them from the minute I found out I was expecting. They were my children and I was their mother.
In that moment I decided to let go. Let go of the grief. Let go of the guilt I felt for the weeks I spent crying. For letting the antiquated information I had about people with disabilities cloud my vision of “perfection”. For letting the doctors fill my head with doubt and question whether or not my children were worthy of coming into this world because of their extra chromosome. Down Syndrome was not the worst thing in the world. They would have a future. My children would go to school, and parties and vacations! They would wake up on Christmas morning and open the gifts that Santa left. They would climb into our laps at bedtime to hear a story. They would chase each other in the back yard in the summer and fight over toys. They would ask for extra ice cream on the rare days that we ate it. They would live a life of limitless possibilities, a life full of LOVE!