Trouble keeping up

So I've had some trouble keeping up with my blog. Mainly because I'm just too damn tired. Scarlett doesn't sleep much and when she does it's pretty brief. Add to that the boys are too old to nap and there goes sleep altogether. And, honestly, when is the rest of the house stuff supposed to be done if I'm sleeping during the day?

When I say she doesn't sleep, I mean she doesn't sleep. Not the "oh she only sleeps for five or six hours at night" or the "she only has one hour nap during the day". No. I mean that she goes to bed "for the night" at midnight. Wakes by 4 am by the LATEST. Sometimes (read almost always) wakes at 2 am and fusses. Then she'll get some sort of sleep until 4 or 5 am and then she's up until 7:30 or 8 am and by that time my two boys are up (or should be~ school!). That means I have a whole 30 minutes to myself in which I have to prepare her morning drugs and food (I feed her blenderized food I make from home and pump through her stomach feeding tube), get the boys fed and the oldest ready for school, and try to prep our weekday outing to the mommy group we attend before having to rouse Scarlett for her scheduled maintenance.

I do have help. Recently, I have had Respite workers funded by the Ministry take care of Scarlett Tuesday through Thursday night. They arrive at 10pm and leave at 6am. It's nice because I've been dealing with this for so long that I forgot what sleep is like. The down side is that I'm so over tired that it's not doing much yet. I also have Home Support coming. I've only had them 8 days in the last month and it's only two hours a day Monday through Friday but it's nice to have that time to shower or do the dishes or run to the pharmacy.

The Respite funding, however, is only bumped up for the workers until February. When I told Scarlett's doctor this, she told me that I'm going to have to go to the media for help. I even told her that I'm OK with having Scarlett marked as terminal because she wasn't supposed to make it to 1 year and now she's going on two. Whatever it takes to keep our family together. I understand that there's a problem because Scarlett is the first of her kind and they don't know what's going to happen to her, how long she'll live, or anything that she can or can't accomplish during her life. Right now she's 24/7 care. I don't see how that's going to change much and neither does my husband. Scarlett's missing a large portion of her brain and has so many conflicting and complimenting conditions that she could die before I finish this blog post. And yet she could live until she's 90. She can't talk (well, she says a few words but they lack any sense of meaning), she can't sit unsupported, she can't eat by mouth, she can't hold object in her hand for longer than a few seconds.....the list goes on and on. Doctors don't know what to do for her. People who love her are scared by her because they don't want to be the one she dies with.

Between trying to be "normal" with the other daily kid/house/life stuff, and keeping up with Scarlett's 24/7 demands and appointments and blending food and keeping her alive and running errands and and and....I'm getting tired. I wish I had a fairy team that would magically clean my house, feed my family, run my errands and allow me a moment to breathe.

I'll leave off with a good note though. I received in the mail that Variety Children's Charity fund has approved our request for a Vitamix Blender. That's the best blender ever for blending her tube food. Plus I literally burned the motor out of the Baby bullet. It was smoking for 10 minutes hahaha. I expected that considering I was totally not using it the way the instructions say. The Vitamix is on it's way and should be here mid-month. I'll have to post a picture once it's here!