It's Been a Weird Week

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Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day.  On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler.  On Wednesday, she ...
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Too Soon for Winter!

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The weather people have been threatening us for days and now as I write this post, there is white stuff swirling and twirling down from the sky. I guess maybe we North Dakotans should have known that we were going to have an early winter, beings our summer was actually more like fall. But still...it is truly sad to see the green leaves falling off of the trees without even having a chance to turn color first.

It is also truly sad that parents have had to dig out their kids' winter attire, including mittens and boots. I know it can be difficult getting kids all bundled up to go out in the 20-degree weather, as we are having now. But for parents of kids in wheelchairs, it is not just difficult, it is a chore unto itself.

Faith's new chair, while she sits in it so well, is truly a pain when it comes to her winter garb. She has these side lateral things that help her stay in an upright position. You can pop the laterals out which is great for getting her coat on but since she is then almost twice her normal size, the laterals keep popping out and when this happens, she falls sideways.

I'm not sure what's going to happen when she has to start wearing her snowpants. Is she even going to fit in her chair, I wonder.

The first chair she had was called a Kid Kart and we had a special cover for it to protect her from the wind when she is outside. This chair comes with no such thing. So far, I resort to putting a blanket over and around her legs and have her face covered with a sweatshirt of mine, which she doesn't like because she can't see anything. The Kid Kart cover had a special little window so she could still see. I guess we'll need to figure something out.

I think some people think I am a little crazy for walking my child to school in this cold weather but really, by the time I get her to the car, into the car, her chair taken apart, drive down the street, put her chair back together, get her into her chair, strap her into her chair and take her inside, I might as well have just walked her to school in less time.

I do wonder, however, how it will be trying to get her chair through the snow when it actually accumulates on the ground. I tried it last year and her chair just didn't budge in the snow. Hopefully this winter we will not have another 100 inches.

Ah, yes, the dilemmas that winter brings with it. Why couldn't winter hold off for another month or maybe even two?

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It's Been a Weird Week

-
Image
Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day.  On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler.  On Wednesday, she ...
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Guest Post: Who Needs Sympathy?

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Guest Post by Stephen Gallup Last week, a columnist for the local newspaper interviewed me in connection with a memoir I wrote that’s being published this year. It was a comfortable, low-key discussion in which he asked about the basic facts regarding my disabled son Joseph and what I’ve learned that might be of value to other families. It was the sort of dialog that required no special preparation in advance. I just sat down with him and talked about the subject closest to my heart. But looking back on it now, one thing bothers me. In concluding the interview, the reporter expressed heartfelt sympathy for everything I’ve endured. He was being more than polite. I mean, he laid the compassion on with a spatula. Startled, and already thinking ahead to what I had to do next that day, I just thanked him and said goodbye. But now that final note troubles me. I don’t want sympathy! First of all, from the point of view of a new author hoping to promote his book, sympathy...
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