The Struggle against Bitterness

I work very hard to keep the stories in this blog positive.

When I look at the Google Analytics reports on various blog pages, the ones that portray this lifestyle as inspiring or uplifting get far more hits than the ones that shed light on the more difficult aspects of caring for a significantly disabled child.

Here is your warning: This is not one of the uplifting posts, so you should take this opportunity to click away right now.

Go on. There are cute kitten videos on YouTube.

What are you waiting for?

Okay, you asked for it...

Most people have no comprehension of this life. People have said things to me, quite innocently, such as, "You know that feeling you have when you sleep-in too late?"

14 pills a day have to be sorted and administered
Sunday morning ritual of sorting the bitterest of pills
"No. I don't." I say.

I haven't slept-in since Savannah was born. My days of rising at a reasonable hour ended in 1999. If I have a bad night. If I have the flu. If I wake up with a broken hip, ebola, and a ruptured spleen, I'd still have to drag my sorry ass out of bed at 6 am every freakin' day for the rest of her life.

So what has brought on the bitterness today? Well, this morning we slept until 7 am. It being Sunday, we thought it would be nice to not get up before the sun just once in fifteen years. Savannah punished us by crying for more than an hour at the top of her lungs.

On Tamara's birthday (a few days ago), she wanted a day out: lunch, coffee, art museum, dinner and movie with her family. Is that so much to ask for?

Apparently, it is.

Savannah had a bad day at school: irritable, more seizures than normal. The nurse called and wanted to send her home. Tamara sighed. I could hear in her exhalation: resignation, sadness, the creeping pull of depression. The happy-birthday sparkle drained from her face and she aged ten years right before me.

"The last time this happened," she said to the nurse over her cellphone, "we were trying to celebrate our anniversary."

We picked up Ruby, got take-out, and went home. I stood next to Savannah's gurney, stroking her hair and talking to the nurse. The nurse was monitoring Savannah's pulse and oxygen levels, which had returned to normal. She was fine.

We ate mostly in silence in our house with few lights on.

It is hard to stay positive on this journey. It's like living with an unpredictable monster...
...who takes your toys and breaks them.
...who lets you plan an outing, then cancels your reservations.
...who kicks you when you're down.
...who deprives you of sleep.
...who steals your quiet moments.
...who actively tries to prevent you from ever doing anything that you want to do again.
And most insidiously, who makes you believe that fate's awful variables are causal, and that these circumstances are your fault.

I struggle against becoming bitter; I grab at the small things. A smile from Savannah when I sing to her, a spontaneous hug and "I love you" from Ruby, a sunny winter day, a warm kiss on the cheek.

Savannah has made me appreciate these things, which has made my life richer, made me humbler... but it's a very bitter pill to swallow, very bitter, indeed.

#specialneeds #depression #bitterness #struggle #disability #bitterpill



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