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Monday, August 8, 2016

What I am tired of

I'm tired of being on edge 24 hours a day, 7 days a week.  I'm tired of never, ever being able to fully let my guard down.

I'm tired of cleaning up messes.  I'm tired of changing sheets, always having a huge pile of blankets waiting to be washed, tired of the type of pull-up disaster that still happens way too often.

I'm tired of screaming.  I'm tired of not knowing why the screaming is happening.

I'm tired of reading about possible causes of autism, which all seem designed to make me feel guilty, because it seems like every single one is something I've done or taken or not done or not taken.

I'm tired of rude people that stare.

I'm tired of worrying.  I'm tired of being scared that someone will hurt Janey when I'm not with her.  I'm tired of feeling panicked when Janey comes home from school upset, because I have no idea what might have happened to upset her.

I'm tired of the same episodes of the same TV shows, year after year after year.

I'm tired of not even counting on a full night's sleep.

I'm tired of dreading the future, especially the part of the future that will happen when I am dead and gone.

I'm tired of IEP meetings.

I'm tired of hearing about great new camps or lessons or programs or events that Janey can't be part of.

I'm tired of having to advocate.  I'm tired of having to figure out backdoor ways to get the services Janey needs.

I'm tired of feeling angry---angry at celebrities who have "cured" their kids, angry at politicians who don't even have the slightest idea what life with an autistic child is like, tired of feel-good stories about wonder dogs or magic trips to Mongolia or miracle breakthroughs.

I'm tired of being tired.  Physically tired, all the time, every single day.

Soon, very soon, I'll write about the joys of autism, or more specifically, the joy Janey brings me.  But today, I am tired.


Rachel Davis said...

Keeping it real. Thankyou. I hear ya and have and sometimes am there.

Karen said...

I have been reading your blog for many years. I found it a few months after my daughter was diagnosed with autism at 20 months. She and her twin sister turned 7 on Saturday. I like you have two sons also, mine are 10 and 11.

I have followed the highs and lows your family has faced raising your beautiful girl and I have so much respect, admiration and gratitude for what you share here. You are lucky to have such a wonderful daughter, and she is so amazingly lucky to have you for a mom. The strength you have given me over the years by sharing you and your family's story can't be overstated. Your honesty, depth of love for all three of your children, and preserverence through major challenges is truly amazing.

My daughter elopes, had a feeding tube placed after intensive feeding therapy failed, and is not potty trained. I've spent thousands on lawyers and advocates and still struggle with whether I am ever doing it right. I haven't slept through the night in consecutive days in years. My sweet girl sleeps in a special needs canopy bed for safety and has an adaptive stroller and special feeding chair. We've never vacationed as a family, eaten out, or seen a movie together.

All this to say...I understand your exhaustion, your desire to turn off the constant hum of anxiety that lives inside you. I'm sending you my thoughts of understanding, and my hope that knowing you are not alone in this makes it even a tiny bit easier. I thank you from the bottom of my heart for sharing yourself and your family the way you do. It has made a big difference in my life.

D. T. Tallulah said...

Moms have limits. You are allowed to have limits.

pianorox said...

I can only imagine how 24/7 stress affects you. Any complaining I do about my own stress seems trivial.
I do see signs of moving towards a more relaxed environment in your posts; hang on to those moments!

Sabrina Steyling said...

Your honesty is why I love this blog and have learned so much from you; you don't paint the rosy picture that doesn't always exist. And you know what? I appreciate that and I appreciate you for it!