Tuesday, August 27, 2013

When it IS too much to handle

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.

12 comments:

  1. Everyone has a hard time dealing with life sometimes. If people choose to judge you for wanting a break from all of the crap you have to handle every day, you don't need those people in your life. You need the people who will say "I see you're struggling, can I offer a hand?" There are many of us willing to reach our hands out to you, you just have to grab it.

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  2. Dude. I get it.you have every right to feel that way. Let yourself feel it. Because these shitty ass ,moments are what empower us to keep going for one more day, one more hour.

    You are loved, friend.

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  3. You KNOW I completely understand and have my moments where I feel exactly the same. This life is hard, not fair and no fun at times.

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  4. Though I honestly can't say we experience the responsibilities that you guys are going through, I get what you are saying. Emma was diagnosed with autism today. We knew this was coming but what killed us the most was that they rated her cognitively as a 10 month old infant. My 4 year old is functioning cognitively as a freaking 10 month old infant....and this on top of all the previous things she's been diagnosed with. What.the.fuck.! After all the times you pep yourself up and tell your self that your so lucky to see these blessings in life, pretend like you're super mom and that no goal is to big you can't help but have those moments when you think. You know what...this is horseshit. I should be able to talk to my kid right now and have tea parties and go to chucky freaking cheese, for gods sake!
    I think sometimes you just have to let it hurt you right in the feels. Till that moment when it numbs a bit. Because if I've learned anything, it's that that hurt never truly goes away. Just fades in and out.
    Thank you for posting this Kate, I needed to read this today and many hugs your way!

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  5. Thank you for posting how we all need to vent once in a while we need to quit holding it in! We try so hard to keep a smile on our face and listen to the I don't know how you do it or God only gives you what you can handle well bullshit this is hard and right now its not getting any easier. I don't want my friends to not ask or be afraid of Ruthi. Or the rest of my family for that. Just because we cant come to every social event or even think about traveling hours on end for a visit does not mean we don't want to be invited time and time again because there may be one time that we are able to make it!

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  6. Thank you for saying what we all feel but are not brave enough to say.

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  7. My friend sent your blog my way, and I think I know why. I tend to blog my really personal and dark feelings, and it's nice to see someone else do the same. I have felt very guilty and alone with my thoughts so I totally get it. I know what it's like to feel like a shut in and jealous of other families. I know what it's like to feel smothered and like my happiness and youth has drained away. I have changed and not for the better I don't think. My son has a chromosomal deletion and will be 4 in Dec. He gets sick a lot, has a bi pap at night, and has a G Tube. He is non verbal and can't walk, or sign or point. He is basically a baby still and I have another baby, 16 mos old. My plate is very full and I get tired of people telling me how amazing I am or that other people have it worse. We don't need that. We just need someone to listen, to say that sucks, and to be there for us. Here is my blog if you want to check it out: http://carterthorup1p36.blogspot.com/ Hugs to you!!

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  8. Fuck those Judgy McJudgersons. GOD I hate them. This complete stranger wants you to know that you are totally entitled to your feelings. NO it doesn't mean you love your child any less, it just means somethings things Just. Fucking. Suck.

    (((((HUGE HUGS))))) from one internet stranger to another.

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  9. I totally get it! My precious girl passed away 9 months ago, and I miss her every second, I don't miss all she and our family went through for 6.5 years. Now we can do all the things I wished for when we couldn't and now I can't because of the grief and the guilt. Now I grieve why this ever happened in the first place. Why do our children have to suffer in the first place! And yes FUCK all the people out there that DARE judge anyone for venting there feelings when they have NO idea what life is like with a severely disabled child. We NEVER said we don't love them to the moon and back!! HUGS to you!

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  10. I don't know where it comes from, the love and strength and anger in all these comments, but it has all the ferocity of a tigress defending her wounded kit. I am awed and empowered and furious, all at once, overwhelmed by both the natural intensity of loving and supporting a wounded child and by the very ways in which our culture makes compassion for those who suffer become unnaturally harder than it already is.

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  11. For a heck of a lot of people, I'M the one they look at and go, "Hell, at least I'm not HER."
    Totally understand!!! Thanks for posting the reality of having a kid with disabilities/health issues.

    PS. I love her name... My 6 year old daughter is also Anabelle (SBS survivor, gtube, trach, functioning at a 1-3 month level, etc). {for more on her story, check out our blog http://teamanabelle.blogspot.com/2013/07/about-anabelle.html}

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  12. Kate - This is a WAY belated response to your post. I just wanted to say rock on, my beautiful/ferocious/warrior niece. The raw honesty and emotion in this piece is breathtaking.

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