Looking after Suzanne was hard. She was becoming heavier but her basic needs remained the same. Like those of a young baby, changing washing dressing feeding. Around the clock care sometimes. Sometimes she would wake up in the night and make her singing noises. Marty would go in and say, now Suzanne, go back to sleep it is not morning yet. She would go quiet but as he left the room, she would make more noise. Then settle until morning, It was like she wanted to have to last word.
And I think the hardest thing is that there is no change. The things I needed to do for her at six months, were still the same at nine years. It was hard to look back and not say, well this has changed because nothing had.
I am sure that some of you will think that I am selfish or ungrateful, I did have a beautiful daughter that I loved dearly. I certainly don’t deny that she was amazing but it was hard work, all day every day, Life couldn’t be spontaneous. We couldn’t say, lets do now. We would have to plan, work out little things like wheelchair access, or toileting. ,
Suzanne ate special food too, it had to be specially prepared to a very soft consistency, so takeaways weren’t an option. And she was getting really heavy. I have never been very strong so lifting her was a mission. I had it worked out pretty well though. In the morning, she would have breakfast in bed, then on the days the district nurses didn’t come I would wash and dress her and put her in her chair, brush her teeth and hair and she would be ready for CPU. When she came home, I would put her on her day bed and she would stay there until bedtime.
Her wheelchair came apart and the seat could be used as a car seat. There was no funding for special vehicles and they were very rare anyway. In her early days at CPU, IHC didn’t have a wheelchair van. Some bright engineering type created a portable ramp to make it easy to get her in and out of the van.
It would pull up and I would take her out. Then we would lift this heavy ramp out of the van. Unfold it, and wheel Suzanne and her chair on to it. A foot pump raised her to the height of the van and we would push her in and tie the chair down. Then we would collapse the ramp and lift it back in.
To be honest we only used it a few times. It was so much easier just lifting Suzanne and her chair in, In reality she was lighter than the portable ramp.
I was getting worried though. I wasn’t sure how much longer I would be able to look after her. The dark shadow of Tokonui was always hanging over me. But I was determined to find a way to keep her out of there.
I just didn’t know how yet.
© Barbara Hart 2014