First off, I want to thank my friend Malinda over the The Hos Posse (http://thehosposse.blogspot.com/2013/08/darkest-night.html) for her blog post tonight that gave me the courage to share this one that I've been sitting on. Disclaimer: This post is not meant to be uplifting. I have tried to use this blog to inspire or educate or amuse. Today's post is not about that. Today's post is 100% about venting my shit on you, because the really low points are part of this life, too. Proceed at your own risk...
Things haven't been so great around here. Not with Anabelle, she's been doing well enough. Not with Elyse, who had a great summer running around at her summer camps. They haven't been going so great with me. Life with a special needs kid is a roller coaster, and right now I'm sitting at the very bottom of the highest hill.
Because seriously? This disabled kid thing is getting fucking old. There. I SAID IT. I don't want to be anyone's hero. I just want to wake up and say, "It's a beautiful day, I think I'll take my kids to the park for an hour", without it being a major fucking production. I want to be able to run to the post office before it closes, whether my husband is home from work yet or not. I want to feed my kid dinner without fighting with the piece of shit feeding pump that clogs if you breathe on it. I want to own one piece of clothing that isn't covered in drool.
I am tired of my child being hooked up to at least one machine at all hours of the day. I want to pick her up and cuddle her at any time without getting tangled in cords. I'm sick of listening to alarms 20 times an hour because her oxygen is constantly dipping. I want to be able to walk out of the room without having to worry that she's going to choke on her own crud. I want to leave my house after 4 pm (which doesn't happen, since that is when the nurse leaves). I want to roll out of bed on a Sunday morning and not immediately have to catheterize my child, prepare the pump for a feeding and give half a dozen medications. I want to take my family out of town for a spur-of-the moment overnight.
I feel trapped. I feel smothered. I see no escape, no relief. Nowhere in my future do I see the life that my friends get to lead so effortlessly. I see my youth and my enthusiasm slipping away, being crushed under the responsibilities of keeping up with the needs of one member of a four-person family.
I know a lot of you are now going to want to chime in with suggestions for how to make things easier. Please don't. This ain't my first rodeo. I am deliberately choosing not to get into all the reasons why for all of these things that I mentioned, but trust me: WE'VE TRIED.
I also don't want you to misunderstand me. I once had a very unkind person accuse me of blaming Anabelle for ruining my life. I feel bad for this person (a fellow special needs parent), who clearly could not separate her child from the disorder that afflicted her. Anabelle is not ruining my life. Anabelle is awesome. Lissencephaly is fucking me up. And I don't need to hear about counting my blessings, or about how someone else's life is worse than mine. I've played that game. Yeah, a lot of people have a lot worse crap going on. But you know what else? For a heck of a lot of people, I'M the one they look at and go, "Hell, at least I'm not HER."
So, I'm going to give this to myself. I'm going to allow myself a pity party once in a while. I'm pretty sure I've earned it. I'm sure the Judgy McJudgingtons will have plenty to say about it, but I'm going to put it out there. Because the perfect truth of this life is that at any given moment, God DID give me more than I can handle. I just have to add up all the little moments and hope I still come out ahead on the other side. There is no other answer.