Down Syndrome Awareness Month and Birthdays – A Mother’s Refelction
Is it any wonder that they share the same month?
This year, Andy asked why is it that I get so emotional on Gabby’s birthday. I don’t have this same overpowering weepiness on Lucy or Evey’s.
It’s hard to put into words.
12 years later I can still remember everything about that day. The dimness of the labor room. How scared and tired I was. Finally being moved to delivery. How very hungry I was. And when the doctor told me I could start pushing – after 39 hours of labor I could not wait to met my baby.
The room immediately filled up with doctors. There were some other complications with the birth and I was eagerly waiting for someone to yet “It’s a……” Finally someone said “girl”. I could not believe I had a daughter. And then I held her. I never experienced a love like that.
And after awhile, the doctor, Gabby’s dad and his uncle all gathered around the bed to tell me she had Down syndrome. I cried and cried. I asked, “ How do you know?” And the doctor said, “I can tell just by looking at her.” And I said words that will forever haunt me, “But she’s so beautiful.” As if babies with Down syndrome were not beautiful. And then he told us we had options – we could put her in an institution. And I was immediately snapped out of my sadness. Did he really just say that? I don’t remember what happened next, it was a blur – I was so emotionally and physically exhausted.
After a bit, we had a visit by Melinda and Cindy, life long friends of mine. Melinda was the only other person I knew who had a child with a disability – and I remember her looking at me and saying, “You can do this.”
I remember asking if we still wanted to name her Gabriella. As if somehow she wasn’t good enough for that name now. I didn’t understand any of my feelings. When I looked at her, I just thought, “Oh my, she is such a Gabby Girl”
The nurse swaddled Gabby up and said she was taking her to the nursery for a bottle. I explained that I had every intention of breastfeeding. I don’t even think we had bottles at home. The nurse just smiled and said, “Oh honey, these babies don’t breastfeed.” I don’t remember what came next, but the next thing I knew I had that baby in my arms, cuddled up to me, trying to nurse. And it was then that it dawned on me, that for the rest of Gabby’s life, people would tell us what she couldn’t do and it would be up to us to prove them wrong.
Once we left that hospital, I never looked back. Taking her home provided such healing. Our days were filled with normal baby stuff – we did have extra complications with nursing, but after 3 ½ months, we figured it out and she nursed until I became pregnant with Lucy. Gabby was my best friend – I loved spending every single minute with her. I slept with her cuddled up in my arms next to me. We took the dog on long walks and spent time with friends and family.
Since starting DSIA in 2004, it has become my passion that people see people for who they are – not what they can offer or give you, not for what they might become or do with their lives. I often say that having a child with a disability is so freeing. It taught me to love unconditionally, in the purest form.
What I would love people to know is that people with any sort of disabilities are just like you and I. They love, they feel, they learn, and they teach. Sometimes they do things at a different pace or a different way, but they try just as hard, if not harder than someone who does not have a disability.
My hope, in the coming year, with DSIA’s Medical Outreach Program that we can change the way doctors give a diagnosis. That it is not riddled with misinformation and fear. That professionals are educated about what living with Down syndrome is truly like – and there is support and love out there to help you in this journey.
To this day I am haunted by my sadness on October 30, 2001. I feel like I betrayed my daughter by feeling so sad over who she was. In truth, she is perfect. Blissfully perfect.
“Had I any inkling of what (her) life would be like when she was born, I wouldn’t have shed a single tear.” Ellen Jennings
originally posted by Heather Green, from her family blog, Butterflies and Bellybuttons