Saturday, April 28, 2012

Celebrate, celebrate, dance to the music...

Today is my middle daughter's birthday. She is celebrating to the max and we are celebrating right along with her.
To see her excitement is like seeing the excitement of a young child. However, she is twenty-five. A major milestone in more ways than one.
She reminds us that we should all celebrate every anniversary of our birth. But how many of us do?
I've had my share of birthdays I dreaded. My thirty-seventh birthday was one of my lowest days in my life. Sad to say, but I had two young girls and my hubby wanted another. I grieved for all the opera's I would never sing, I grieved as only a mother of young children can grieve when one of those children has major medical concerns.
Yes, that child I grieved for is the one celebrating today.
When she was born I looked into her eyes and knew I had just given birth to a child with Down syndrome. Of course in those first few days I thought as a nurse. "She's a Down's Syndrome baby. My life has just changed in a major way."
I withdrew into a very clinical way at looking at this baby and my grieving husband. I was just numb, but as long as I thought clinically I knew I could function.
There were pleasures that day. I found it ironic and funny that I managed to give birth right at the change of shifts. I had two shifts worth of nurses in the birthing room with us.
Maybe her first birthday was not a huge day of rejoicing, Sheila has been making up for it ever since.
Three weeks after she was born I was meeting with the geneticist. He wondered how it was that I had already moved through the stages of grieving into acceptance.
I told him that I was a pediatric nurse who loved working in areas like pediatric oncology, cardiology and peds ICU. I had a whole backlog of experiences which taught me that as disabilities go, Sheila had the Cadillac of disabilities. I knew I would have moments of grief during transitions in her life, but that we would be okay.
Since cardiac issues are so common in Down syndrome he wanted to send us to a pediatric cardiologist. Already I had learned that placing the diagnosis in front of the child was verboten in this new world of disability. I had also learned that since Langdon Down, the man the disability is named after, did not possess the disorder that it was now "Down syndrome" NOT "Down's Syndrome".
In three weeks I had come a long way from the numb mother of a newborn.
We saw the pediatric cardiologist and now we had a new fear. Our baby would probably not reach her fifth birthday and would certainly not reach her mid to later teens without open-heart surgery. Ideally, they would like to wait until she reached eleven pounds, but since it seemed highly unlikely she would reach it by the time she was six-months-old, they decided to set the surgery date for late October.
Now I really had something to worry about. And something to focus on. I'd better get to celebrating each and every day we had with her. Realistically, not every baby survived heart surgery--although the survival rate was much better than ten years earlier when I first met a child needing the same surgery.
We had celebrated each and every birthday of this young woman and I rejoice that she reminds us all of how we should celebrate each and every day of our lives.


  1. It's not often a blog post moves me to tears, but this one has. Thank you for sharing your story with us and all the best to you and your family - I wish your daughter a very Happy Birthday xxx

  2. Thanks Michelle.It has been an exhausting and wonderful day. Sheila's exuberance is a joy and yet sometimes a challenge. :) But, in her words, "I'm so happy!"

  3. Just seen this Nancy and what a wonderful tribute to the joy your daughter has brought to your family. Made me cry!

  4. Thanks, Susan! We had a lovely, but exhausting day of celebration. Plus, Sheila never lets it be just one day. So Sunday we celebrated some more. LOL.