Friday, March 15, 2013

Chapter 3: Our Daughter

We went to meet the social worker (Mary) we had been told would be responsible for arranging our training. She then took us to meet our daughter. We walked down the hall. There was a line of children sitting in wheelchairs against one wall. Mary paused in front of a chubby little girl wearing ill fitting hospital clothes. Her mouth was wide open, her eyes were still, and her breathing was very noisy and congested. “This is Kayda”. I, of course, started to cry. At that time Dave and I had been married 8 years and had despaired of ever having a child. Finally we did and here she was. I had bought her a little stuffed dog that barked when squeezed. I put it under her arm. The nurse in charge of the ward she was on and Mary took us to an outdoor area where we could talk. Kayda sat and gurgled in her chair. The nurse told us that it appeared the congestion was just in her throat as a chest xray had been done that morning and was clear. Her eyes were bright though, and flickered back and forth as we talked. I asked about her sight and was told that she was felt to be cortically blind. When our interview was done, we asked if we could take her to the lounge to get to know her better. Once we got in there, Dave’s and my different personalities became obvious. My first thought was to pick her up, Dave’s was to measure her chair to see if it would fit in our little hatchback. When I’d first seen Kayda I thought “she’s not as big as I thought she was”. When I picked her up “I said “you’re heavier than you look”. She was a solid little girl. I held her and cuddled her. She didn’t respond at all and appeared to be uncomfortable. Dave took a turn at holding her as well. Later that week our training began. I enjoyed making the drive in to see our new daughter and learn how to care for her. I’ve always for some reason, been drawn to children with disabilities, and the more severe the disability/challenge/etc the more I was intrigued and drawn to the child. After a break of about 14 years where I only worked with “typical’ children in a wide variety of daycare and preschool settings, a few years earlier I’d gone back to caring for special needs children. The very first time little Amanda was put in my arms it was if part of me had been turned back on again. From that time on (Aug 1989) I worked with a wide variety of children with special needs. Some of that was at a long term care facility with children whose needs were very similar to Kayda’s. That had been the perfect training in advance as much of Kayda’s care was quite familiar to me. As I got to know her better she started responding to me and smiling at the sound of my voice. Hold it! This child has no brain! How come she’s responding very appropriately? She still didn’t like to be held though which is what I wanted to do more than anything-sit and cuddle this beautiful little girl. We very quickly got initiated into life with Kayda. Only a week or so after we met her, I went into the long term care hospital to see her and was met by a nurse. I was told that she had been given an overdose of a medication she wasn’t on and was having some trouble. She was hooked up to monitors and the main concern was her heart rate, which kept going down to 30. It went up when she was spoken to or roused. I spent the next several hours stroking her and touching her. A girl that was in the same foster home as Kayda was also at this facility and she stayed by my side and cheered every time the numbers on the monitor went up. After a while, though it was decided she should go to the Children’s hospital to be checked out. The ambulance arrived. The driver walked into the room, took a look at the numbers on the monitor and said that there was no way he was taking her anywhere. It was decided she needed to be transferred by an advanced life support ambulance. This was quite an experience for such a new mom. I’ve had to take other children I’ve cared for to the hospital but this was different. She was “mine” and I was terrified that I was going to lose her even before she came to live with us. Well, Kayda being who she was, by the time she got to the hospital she was doing fine. I had driven behind the ambulance as I needed some way to get back home. I stayed next to her in the emergency department until it was decided she was fine and would be transported back to the long term care facility shortly. A happy ending to what could have been a tragedy, right? Not quite. Just as typical of Kayda, to bounce back was her ability to make things more complicated. The next day she vomited and as there was no one in the room when it happened she aspirated and developed her 5th aspiration pneumonia in 6 months. She was transferred back to the children’s hospital. We were phoned at home by the hospital telling us what was going on. That was nice, to be made to feel that we were parents at last. I wanted to drop everything and go to her. Dave convinced me she’d be ok and we went in the next morning. We spent most of the day with her. She was mostly unresponsive and mostly comatose. They couldn’t figure out why. It wasn’t just the pneumonia. But, she was still “ours” and lonely there all by herself. But......once again, this young miss bounced back and 2 days later was back at the long term care facility. I was there when she arrived and she was so happy! Every time I spoke to her she smiled and laughed. Hey! this isn’t supposed to happen! She knew my voice after only a couple of weeks. Each time I saw her she became more responsive to me. She still didn’t like to be held.

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