I'm stressed out today because I got a phone call that Little Man is approved for R.E.M. His doctor set up the application and processed everything, I just got the phone call asking if he wanted to be in the program. REM is Rare and Expensive case Management, and in the *best* case scenario, we'll be given the funding through this program to get the safety bed we all are praying for. I'm just nervous because I didn't realize that REM will essentially remove us from the Priority Partners umbrella we were previously using, and when I signed up for that three years ago I had the warning "NEVER LEAVE PRIORITY PARTNERS or you will have major problems." I don't really know much about the program other than its a form of Medicaid, and that it is for kids with major long term conditions that need lots of coordinating care.
So apparently REM does home visits every three months. I guess to make sure that I'm not using my free government cash to smoke rocks or fund my meth lab. (Note to future caseworker - I do not have a meth lab, that was a joke. Please have a sense of humor?) Normally I'd be all "Whatever, I have a clean and drug-free home, and we just steam cleaned the carpets". Except I'm kind of awkward-feeling about the fact that we live in a very nice and clean house, courtesy of the Hubs, who owned his own home long before we came along. I feel like I should be living back in my shitty two bedroom apartment with the water stains coming out of the kitchen lamp because the neighbors had a washing machine accident. Then I could easily say "Look at how needy we are!!!" Right now I feel kind of bashful about it, because on the outside we seem like our lives are pretty together.
Also its weird because as important as this REM will be for Little Man, I feel undeserving. I look at the list of diseases that REM covers and his issues seem so much less... critical? Depressing? Overwhelming? It is hard for me to see sometimes that he has a major medical issue. Don't get me wrong, I'm not blind to his needs or the fact that he will need major help for the rest of his childhood, if not life. He's just my first baby, my only baby. I don't know life any other way than the way we live it with him. He is just Little Man, and we molded our lives around his needs just like any other parent does with their child.
One of the totally awkward things I am terrible at responding to is when people ask me how old Little Man is. I know, simple right? But then I respond "He's four" and then they respond "Oh four is an awesome age! I loved it when my kids were four blah blah blah no more listening."
I've learned to nod and smile politely when people respond that way. Because that's probably the way I would have responded had I been raising a typical kid, and small talk is one of those necessary evils. But sometimes, depending on my mood, I awkwardly say 'Well I don't know. I guess four year olds are fun. But my kid is more like a giant 9 month old with teeth. So um. Yeah. So far its not like raising a four year old at all.' Then I have to answer lots of questions and people awkwardly avert their eyes since I tend to make a lot of jokes and use sarcasm as a defense mechanism. The conversation devolves quickly and I make a run for it.
I don't know what it is like to raise a four year old. I barely know what it is like to raise an infant. I sometimes feel overwhelmed with the idea of having a typical kid in the future. How will I know what to do? What if I am shitty at it? Its like being a new parent all over again, but worse, because if my kid doesn't reach his full potential ITS ALL MY FAULT because his brain is fine and its ME screwing him up.
But I digress. I don't know what its like raising a typical four year old, just like I don't know what it is like raising a kid with one of these rare diseases listed on the REM form. And looking at that list I just want to find all the parents out there with kids with diseases with these horrible long complex names and say "Hey you! You guys! Did you hear about this REM thing? Please get in line ahead of me, because you totally deserve help first. Then me, cause I think I need help too. But you first, please." I'm totally nervous that the case worker coming to my house will say "Well your kid looks fine. I mean, he chews on things, and escapes in the night, and doesn't talk, and he has this crazy limp... but have you seen a kid with real needs lady!?!?"
I am completely over-analyzing this.
Its the lack of sleep. 7 escapes last night. No napping during the day per doctor's brilliant idea/he refuses them.
I just have to remember that we need the help too, no matter how hard it is to wrap my brain around. That his doctors would not have recommended us to this program and helped us find it if we didn't need the help just as much as the other needy families on the list. We wouldn't have been accepted if they thought we didn't need it. Just because we are getting by, doesn't mean that it can't get better.
I'd like it to get better.