Respite

This week has been difficult. More on that later. I am on day 10 of being sick, but there were a couple of things that I had to get done. One of them included getting Bigfoot some new shoes, as he has grown out of all but one pair, (what 2 1/2 year old wears a size 9?). He also needed a winter coat. The whole not-being-able-to-regulate-body-temperature thing requires a good, thick coat in the 'Tah. Add to the list a new hat and waterproof mittens since the obsession with the white stuff is only getting stronger. The other was getting Mr Skinny some new jeans. Apparently I am a bad wife - he looks malnourished and his pants are falling off. Have you ever tried getting jeans for someone that is 6' 3" and weighs about the same as a teenage girl? NOT easy. I told him Wranglers would totally work, but he wasn't going for it. This required both Brian and I to leave Cole. Remember the last time we took him to a store? Family pictures are next week and so I couldn't put it off any longer. The Mr needed the jeans (yes, I have to approve all jeans purchases, leave him to his own devices and he buys old man jeans three sizes too big) and the coat was becoming more and more of a necessity as the temperatures drop around here. So, sick and all - we planned to venture out. That means we had to start the process of finding someone to take Cole.

Good babysitters are hard to come by in this day and age. They are practically non-existent if you have a child with special needs.

It's difficult to find someone who will let you come over and bring a large bag full of supplies and an instruction course that goes something like:
*Here's the oxygen tank. You use it like this (proceed with lesson)
*Here are two choices for meals. They are labeled. Choice A goes with the green cup, choice B goes with the blue cup. He has not been eating lately, so that is why we gave a choice. Everything has been weighed and measured. He only gets one. That's it, nothing else.
*Here is the pulse oximeter (proceed with lesson)
*Here are two types of rescue medication. Give this one first. Then if it doesn't stop, give this one. (proceed with lesson)
*If he has a seizure, call me. Do this and then this, then call 911; but most likely I'll answer and talk you through it
*Here is the only type of liquid besides water that he can have. Keep asking him if he wants a drink
*Here are the cotton balls. Put three in his diaper when you change it, so I can check his ketones...I will not make you do this, it gets messy
*Here is The B, and Elmo. Here's the remote, your new best friend (proceed with lesson)
*Here are his medications, pre-drawn in syringes because the doses on the bottle are different than what he actually takes
*I've laid out his pajamas. You can take the SPIO off when you get him ready for bed. Make sure he sleeps on his special pillow and not on Daddy's regular one
*Here is a sheet where I have typed everything so you don't have to remember, it's a lot of information!
*Here is our insurance card and address...it's on the sheet, in case you have to call 911
*I'm sure he'll be fine. Any questions? ;)

A little intimidating to your average 15 year old. We only leave Cole with adults that we've known for a long time, who have seen him have a seizure, so there are only 4 or 5 people on our list that live close by.

Being gone from Cole for only a couple of hours requires the preparation of a major vacation. We show up with enough supplies to look like he's staying for the weekend, when really it is only for the evening. Usually, we have them come to our house, so Cole doesn't have to change his environment. Dropping him off, rarely occurs. You can see why we don't go out much. It's a lot of responsibility to look after Cole, even if it is only for a few hours. Vacation isn't really a word that we use anymore. It's just reality.

We are so grateful that we do have a few, choice people that we know we could call if we really need to go somewhere, or if date night hasn't happened for um, three or four months. Plus, they do it for free! I really worry about getting a new group of caregivers when we move. It takes a lot of time and energy to build enough trust in someone to say, "Here he is, see ya later!" I really look forward to the day when we have respite services. A skilled, professional that can be our 'baby-sitter' and allow us to have normal relationships with other people; instead of scoping them out wondering if we could add them to our arsenal. Not that we do that ;) Respite is covered under some insurances and if you have services with the state. We are not covered by either. I've thought about hiring a nursing student, or someone with medical skills, but that just gets expensive. Some people dream of diamonds...I dream of respite. Oh, who am I kidding? I dream about diamonds too! ;)