Respite Problems Again

Respite has become a joke, a farce, and an absurdity around here. Sometimes I think the universe has something against me—or maybe it’s just the state of Colorado. It has been two weeks since we were supposed to receive respite care. There has been cancelation after cancelation. So today, I thought for sure the aide would be out. The agency said she would. But why should I ever presume to be so optimistic? Twenty minutes past the time of her arrival, I called the agency. Apparently, she had forgotten to come. At 9:00am, they said she was on her way. However, she never showed up. Now, I ask, is this the type of person I want to care for my son? If she cannot remember a simple appointment time, how is she supposed to provide quality care for Zane? I was supposed to have respite again this coming Wednesday, but now I am in the position where I have to train new people again. Aaaagh! I already trained two people who have never come out to give me a reprieve.

My friends and I have noticed that there seems to be a lackadaisical approach to life in the Durango area: appointments are suggestions, calling people back is optional, medical care is iffy (with the exception of the boys’ pediatrician)—that sort of thing. I am not used to this do-what-you-want attitude that I find in this area. I certainly didn’t grow up with it in the Midwest and didn’t experience it all the years I lived in Phoenix.

If I wasn’t so desperate to receive free time so that I can work my at-home jobs, then I would cancel respite with this agency altogether. Right now, it is more hassle than help.

Sickness and Immunizations

(Warning: the last paragraph contains controversial content)

Last night at 7:00 our house was aglow with candles. Yesterday was Pregnancy and Infant Loss Remembrance Day. We lit candles for all of the little ones who were lost due to complications associated with Trisomy 18: Tristan, Noah, Molly, Ryan, Gabriela, Abigail, Brianna, Isaac, Meiko—to name just a few. We also know of many women who have lost children during pregnancy due to miscarriage, including myself. So we lit candles in remembrance of those babies, as well. I am sure I am forgetting some names, but not intentionally. Some of those lost were older than newborns, but it felt like a fitting time to light a candle for them, too. I was amazed I had enough candles for everyone. I must be keeping the candle industry alive.

On a different note, Justin was sick with what appeared to be the flu this past week. He had a fever for over 60 hours with some respiratory issues. He had the flu mist for the A strain over a month ago, so we can only assume it was the H1N1 virus. We kept Justin isolated from Zane the whole time he was sick, and so far Zane is his same happy self. I took him to get his flu shot at the pediatrician’s office today. They have been waiting on preservative-free shots, and they finally received them. We’re not sure whether we’ll have Zane immunized for the H1N1 yet. It appears as though Justin has already been exposed. The boys’ doctor is supposed to release something in writing as to her professional opinion about the vaccine. We will follow what she advises. She has always been very balanced when it comes to eastern and western medicine, so she is never eager to do something that could prove harmful to a child.

Speaking of immunizations, Zane has qualified again this year to receive the Synagis shot to prevent RSV since he falls into the high-risk category. The one time he did not receive it, he came down with RSV and wound up on supplemental oxygen. Obviously, we attempt to avoid that at all costs. Many children each fall/winter wind up in the hospital because of flu and RSV. We don’t want to be any of them, thus the vaccinations.

I know there is a lot of controversy about immunizations in general, but there is a reason many of the diseases of the past have been eradicated. We’ve always weighed the pros and cons of all situations (we’re very A-type personality that way), and the scientific evidence for immunizing is far stronger than the qualitative and subjective reasons not to. I respect everyone's personal choice. I just don't like people giving me a hard time because of my choices. Thus, the ranting last paragraph. I’ve stepped off my soap box now :-)

Ranting about Respite

Respite was supposed to happen today. It didn’t. It feels as though it never will. The aide who was supposed to care for Zane today had to take her mother to the ER last night. I know these things happen, but I was disappointed and a bit miffed nonetheless. I had planned to work all morning, therefore I didn’t work yesterday. Now I am behind. The respite that is supposed to be helping me is a hindrance at this point. Last week, I gave up a few hours to help train the aides and they didn’t even come today. While this may not be a big deal for someone who has loads of free time (like the people who post status updates more than once per day on Facebook), it is a huge deal for me. In addition to caring for Justin and Zane, I work three jobs from home. Time is quite valuable. I must say, I loved spending the time with Zane this morning in lieu of work, but now I have to find time to fit my job duties in this week. Friday is supposed to be my next day of respite. We’ll see if it happens.