The pediatric cardiologist came in the room to go over the results of the echo-cardiogram. The doctor was a man with soft dark eyes and a gentle disposition. His Indian accent pronounced, yet easy to understand.
He began by be-bopping what a normal heart sounded like. Then he proceeded to be- bop to Nichole’s heart. A talent I found helpful in understanding what he was talking about. He said the echo had showed 2 different heart defects. A VSD (Ventricular Septal Defect) and an ASD (Atrial Septal Defect). Basically, Nichole had 2 holes in her heart. He reassured us that most babies are born with a VSD, and that they usually closed on its own. However, this was not always the case for babies with Down syndrome. Because of this, we would not be able to go home the following day. Instead, they would do another echo and watch for progress.
Her heart is broken, just like her. This is happening because she has Down syndrome.
Down syndrome. Those words consumed my thoughts and my feelings. They robbed me from enjoying my newborn baby. When I looked into her face, I did not see Nichole, I saw Down syndrome. The holes in her heart were magnifying glasses announcing in bold letters…YOUR BABY HAS DOWN SYNDROME!
I knew I was not the only one who saw Down syndrome when looking at her. My mother had seen it. Even my friend’s 6 year old had exclaimed with innocent delight “She looks just like Jennifer when she opens her eyes!” I knew that if a child could see it, so could everyone else. And I hated it. I hated that it was obvious, I hated that people could see that my baby was different. I hated that I saw her as different, that she was different. I hated that she had Down syndrome.
By the end of the day, I still had not received the promised pump. I felt sure my baby was not nursing successfully. Sure that it was because of Down syndrome. I needed the pump. I needed to be successful at something, and making milk was the only thing that seemed promising. But there was no pump. I kept asking for the pump, and the answer was always the same. “I will bring it to you as soon as it gets here.”
I had a baby with a broken heart and a broken sucking reflex.
I don’t know if I can do this much longer.
I picked up Nichole from her bassinet, and our bracelets sang their song in their close proximity.
“We belong together,” I repeated, feigning a happy tone for my husband.
Do we really belong together?
I settled on the couch, time to nurse her once more. Time to worry she was not getting enough to eat. Time to be reminded that she had low muscle tone.
It is because of Down syndrome.
“We belong together,” I said once more.
Do we belong together? Because I don’t want to. I don’t want us to belong together.
“We belong together.” My mantra, willing it to the deep places of my heart. Desperate to make it be true.
Yet all I could think was that my baby had Down syndrome. My baby was not getting enough to eat, and she had a broken heart.
So I smiled while I stared at Nichole. Because I was pretending. Pretending that I was okay. Pretending to the nurses, to my husband. Even pretending to myself.
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Thanks for being so real. I know this story has an ending, a joyful one, I hope, and I look forward to reading it.
ReplyDeleteI can relate to that so well.
ReplyDeleteYes Kathi, there is a joyful ending!Actually a joy filled life with her. The broken one was me, not Nichole and you know how much we adore her!
ReplyDeleteThose early emotions are so raw, so unbelievable. Even after her heart is fixed, you still can't believe the road you have traveled. She's beautiful!
ReplyDelete