"Simone, Simone my little pumpkin seed. Started out so small now she's growing like a weed. Simone, Simone my little hummingbird just spreading her wings, now she's flying 'round the world. These are the words I sang as I held my dying daughter in my arms. At last the little hummingbird was free. This is the story of Simone Joy. While pregnant with Simone,a hummingbird came to visit our family. It wasn't sick or wounded. It allowed me to pick it up and feed it with an eye dropper full of sugar water, full of life and wonder it perched on my finger- then it flew away. This story became a metaphor for Simone's short sweet but wonderful life.She was given to us as a gift to nuture and love and then she was gone. Having a surprise pregnancy at 40 was a shock, especially since I needed fertility drugs to concieve my boys. Then, the devastating news-Down Syndrome. What would it mean? How could we cope? I had so many questions. So began my relationship with Family Resource Network. Right away they sent me up to date information, more almost than I wanted to know. They hooked me up with other mothers who had DS kids. How comforting to talk one on one with someone who knew exactly what I was going through. No one judged me or tried to convince me one way or the other what to do.They just listened to my tearful concerns and let me come up with the "right" decision. We don't know the potential of any of our children. I felt like she was just like one of my other kids, she just wasn't born yet. We had all the proper test to find out about her heart and fortunately all seemed okay. Downs kids tend to have a lot of heart problems so we were very happy with the news. Instead of having a c-section in a huge cold hospital among strangers I had a precious birth experience locally, in a birth center around loving family. Simone cheated death more than once. When she was 3 months old she contracted RSV pnuemonia a paticularly nasty viral strain. A baby killer. She was medi-flighted to U.C.Davis. I stayed at Davis for the month of February, while my husband tried to work and play Mr. Mom at the same time. Then 26 days later she was flown back in heart failure. It was discovered that she had a serious heart problem that needed a two stage surgery. As I sat in the PICU day after day unable to nurse her or and only able to hold her after ten days of longing, I was amazed at her strength-six pounds of determination. As I had known even before her birth she was very special this hummingbird girl. After she came home from the hospital for the first time it was very intense. Coming home on oxygen and with a NG tube, which enabled me to feed her directly from her nose into her tummy. I was so afraid she would have to go back to the hospital. She looked like a fairy waif with her large inquisitive eyes.Her spunky spirit showed through even then as weak as she was. Gradually very slowly she got better in little baby steps of time. As she gained weight,her shining personality really blossomed. Her kicking feet were one of her wonderful features. She would kick them madly in anticipation or suck her toes if it suited her mood. The little fatty was thirteen pounds as we prepared for the final surgery which we hoped would be her cure.Finally I thought we could have a normal family. We worked it out so that she would be repaired and out of the hospital by her first birthday,October 29 1994. She was admitted Oct. 10th with surgery planned the following morning. It was all systems go and we took cheery pictures before we wheeled her down to surgery. We had gone through this before and were confident that she would be fine.After all she was so well, the healthiest she'd ever been. Oh, the long wait and worry until we saw the surgeon again."Things look good", he said and we were elated. The happiness was not to linger as with each new day, some new horrible decision had to be made. She wasn't getting any better. Her heart was failing. I won't go into the gory details about how she deteriorated.but the inner strength she had exhibited earlier once again had doctors and nurses in awe. This is not the way it's supposed to be-this was supposed to fix her. We learned there is nothing fair about death. There's no order to it ,no way to figure out who's next. I don't know for certain when I knew, but I knew she would die. A mother knows,although she may not admit it to anyone but herself. Finally near the end a kindly nurse told us we could stop all the extra measures. That this could drag on to be much worse. I could'nt imagine that it could possible get any worse than it already was. I put things in writing as all thigs in the hospital must be and prayed for her death. When the time came we were there to talk,share hold her and sing "Simone, Simone my little hummingbird just spreading her wings, now she's flying free. Simone Joy died four days before her first birthday. I wanted to share her story. A little wonder of a girl who touched so many-even people she never met. That was her magic and it still goes on even now.
Ruth Johnson
You can send email to Ruth at [email protected]
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