About the 'Positive Outlook' People Think I Have as a Special Needs Mom
Warning: If you’re looking for a cheery, inspirational story, come back some other time. This one promises to be dark, ugly and depressing. Still reading? Don’t say I didn’t warn you.
I’m angry that life is so bleeping hard sometimes.
I’m angry that swearing is naughty, because it feels really good to say those words at the moment.
I’m angry that neutropenia exists.
I’m angry that my daughter, Willow, can’t just have an extra chromosome and move on with life.
I’m angry that a stupid mouth sore can lead to a hospital stay.
I’m angry that they don’t serve wine in hospitals.
I’m angry that all the work she put into gaining weight these past three months has been wiped away.
I’m angry that there are good nurses and bad nurses, good doctors and bad doctors, and I have no frigging clue who to trust.
I’m angry that the only drug that can help my daughter produce enough white blood cells to fight off infections gives her bone pain and makes her miserable.
I’m angry that a stupid infection could make Willow’s already weak muscles, weaker.
I’m angry that Willow has missed two weeks of therapy.
I’m angry that it’s cold and flu season.
I’m angry that in the past two weeks, this family has battled strep, a mystery virus and a nasty mouth infection.
I’m angry my husband announced last night that he’s coming down with a cold.
I’m angry that my laundry doesn’t do itself.
I’m angry that I don’t have the guts to say, “Craptacular” when people ask me how I’m doing.
I’m angry that God seems so distant sometimes.
I’m angry that it feels to me like being a Christian can make life harder sometimes.
I’m angry that we need to experience the bad stuff to get to the good stuff.
I suppose if you’ve read this far, I owe you an apology. I’ve probably ruined some of your opinions of me. I always laugh when people say, “You have such a positive outlook.” The truth is, I get angry, depressed and downright pissy at times. Oops. Is that a swear word? Sorry. There’s no turning back at this point.
Do you want to know another thing that makes me angry? Some of you might read this and pity me. Or worse, you’ll take this post and twist it, drawing the conclusion that raising a child with special needs is hard and therefore not worth it. That’s just a pile of… well… you know what. Man, I need a bar of soap in the mouth.
Would you believe, I actually yelled at God this week? Overwhelmed, full of anger, saturated in exhaustion, I yelled at Him. “I’m just so angry at you!” You know what happened? I believe He took it. Like a good father would.
See, I’m pretty sure He knows I’m just having a moment. I believe He also knows I still love Him the same. And the best part? He knows the purpose behind this pain. There is purpose. Obviously, I’m angry that I can’t see it right now.
Now, where’s the candy? I need some chocolate.
Follow this journey on The Mighty Willow.
The Mighty is asking the following:What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.