DAILY LIVING & MOBILITY

The Day We Won the Lottery

Amputee

Beth Kazmierczak

Looking back on the day Nora was born, I always tell my husband Jim we should have played the lottery. The day Nora was born started out like any other. I was scheduled to have my bi-weekly NST and ultrasound and our scheduled c-section was still two days away. Luck would have it that we were given the news that our daughter would be born that day, and we would not be waiting-my NST was non reactive and my doctor was ready to bring our little one into the world. Lying on the operating table felt familiar and cold-I had had a C with my older son Ben and I was thankful I wouldn't have to be induced again. My husband came in and we were ready to meet our daughter. When Nora was first born, I remember waiting to hear her cry. She was a bit pre-term at 36 weeks, 5 days. I heard her wail and tears immediately came to my eyes. A neonatologist was in the room that day as she was pre-term and he took her to be examined. The words came from his lips so nonchalant that even to this day thinking about it gives me chills-"she is showing some signs of Down syndrome." I remember staring blankly at my husband, "what?" is all I could blurt out. They let me see her quickly before she was whisked away to the NICU. In the recovery room, I was numb-literally from both the epidural and spinal tap I had been given. My husband came back from the NICU visibly upset. Ironically enough, Jim is a special education teacher and had worked with children with Down syndrome in the past. All he kept saying was "I hope her heart is okay." The neonatologist came in and explained to us that they would be doing an echo the next day and also explained to me about her hand. You see, Nora had been born not only with Down syndrome, but also (unbeknownst to us at the time) Symbrachydactyly​ causing a right hand anomaly​. The doctor seemed extremely focused on us seeing a plastic surgeon-even insisting upon it. And I remember thinking, why is he so insistent upon us doing this? ​​ The next few weeks were a blur. In and out of doctors offices, and all types of medical professionals telling us "what to expect". We luckily found a local GiGis Playhouse and were connected with Lucky Fin Project. Oddly enough, I think it took me longer to come to terms with Nora's hand. People always ask me if she will need a prosthetic and I tell them no. She was born the way she was and will adapt. I remember asking her plastic surgeon the same thing myself and him smiling and saying "a prosthetic is something that will make other people feel better, she will adapt just like everyone else". And Nora has shone brightly ​these past​ two years​.​ ​S​he​ has proved to us that she​ can do so many amazing things​ with just one hand​. She is a superstar and hasn't let anything get in her way-she has her own personality and she sure as heck lets you know what she wants and means to do. I was 28 when I had Nora. My odds of having a child with Down syndrome were about 1 in 1, 000. My odds of having a child with Symbrachydactyly was about 1 in 40,000. We hit the jackpot with Nora and I'm SO proud and blessed to be her mom.

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