I have a physically disabled daughter
I have a physically disabled daughter. It still hurts to say that. It started out a C-section because she was breech. I noticed when they pulled her out that something was wrong. Her body was bent and twisted. They had a hard time telling whether she was a boy or girl because they couldn’t pull her legs apart easily. Right away the mirror they were holding up for me to see her was taken away. Later she was taken away to be examined.
I didn’t get her back for five hours.
I was shaking so hard on the operating table. I just wanted to see my baby. The nurse said there was a “complication” and that it “wasn’t your fault” and “there was nothing you could have done.” But that’s all the information I was given. I couldn’t imagine what she was talking about. Every hour that went by was torture. I was throwing up and crying. I knew something was really wrong and I just wanted my baby.
When I finally got her she was wrapped up and all I could see was her little face. I couldn’t believe that I had a human life right in front of me. She was so little and so beautiful. They took her away again and I could finally sleep.
It wasn’t until later that I saw her whole body. Never having a newborn before I didn’t know exactly what was wrong. Her body didn’t move. Her legs were curled into herself and her arms were missing the hands (which I didn’t notice until realizing that her wrists were just terribly bent backwards). It was scary.
She was diagnosed the next day. The doctor who wrote the textbook on it came and broke the news to us. I started to cry, but was really in too much shock to really understand fully what he was saying.
A student came in halfway through breaking the news with a slight look of excitement on her face. She was told this was a very rare case and she needed to “observe.” It was a little morbid. The specialist gave a look of half-hidden disdain and announced sharply that he would not be showing her the baby’s features. She seemed a little bummed. Vulture.
The doctor leaned across my bed to break the news. He spelled things out and wrote them down. Every time he asked if we had questions, we didn’t know what to ask. We asked if she would be able to walk. He said he didn’t know. I cried some more.
It hurt to cry. I mean every time I sobbed the incision hurt so bad. My guts felt like they were falling out. We turned away visitors. I couldn’t blow my nose. Charley kept getting me wash cloths to mop my face. He was crying. It felt like when mom was killed.
We both would say we didn’t really “bond” with our baby until the diagnosis. Then we would have taken her pain on ourselves. She was our beloved only daughter and we’d only known her a day.
Now my every emotion is tied up with her. When she breaths funny (as babies do) I hyperventilate. When she cries, I cry. When she fusses, my chest aches. I can’t sleep. I have nightmares that she’s in pain or hungry.
I am so depressed. I feel like I can’t do this. Sometimes I’m afraid to touch her. We had problems with our insurance and couldn’t get her physical therapy for over a week. I felt helpless.
Everyone tells me that she’s beautiful. I feel like it’s just lip service. I mean she’s so obviously deformed. But when I look at her face she is beautiful. When people say she’s perfect I get upset too.
The nurses said I should look at the other babies in the nursery to get an idea of what hurts our special daughter and what is normal baby crying. I tried. I couldn’t. Those babies looked so whole, so normal.
We went to her first hospital visit today. There were so many children walking around. I walked passed the handicapped parking space in front of the building and cried.
I just keep thinking that I can’t do this. I know I can. But if I could just get over the depression and grief it would be so much easier. I want to feel normal again.
