Tuesday, September 11, 2012

Running a Marathon

"Perseverance is not a long race. It is many short races one after another." - W. Elliot

The quote says it all. When you are the parent of a child with special needs, Every Single Day is a short race. And then another the next day. And again the day after that. Some days have multiple races. It's like running a marathon that you didn't get to train for.

There was a time in my life, not very long ago, where I'd wake up in the morning and convince myself to go to the gym.
Now, I wake up and convince myself to take my sweet daughter to physical therapy and occupational therapy, where I will be reminded (again) of what she's not yet capable of. Reminded of how much work we still have ahead of us. .
I wake up and convince myself that going to therapy is better for her than going to the park and swinging, or staying home and snuggling on a rainy day.
I wish for someone to convince me that it's not a necessary evil.

This never happens.
I fight this battle every day. I'm running a race that I don't feel I can win most of the time.
I hate taking my daughter to therapy. I hate doing therapy at home. I hate genetic testing, and orthopedic appointments and blood draws and evaluations and assessments and referrals. 
I hate that when other toddlers are playing, she is being twisted and stretched and forced to move in ways that are unnatural to her. 
I struggle with these obligations. I  consider "taking a break" from her therapy and other appointments, but then I have to fight the guilt that consumes me wondering if that would be detrimental to her already slow progress.
And then... she has a day that is beautiful. She goes to therapy, and smiles the whole time. She actively participates, and never cries or protests. She WORKS SO HARD. And all of that just to take some "steps" in a device that is holding her up. But the excitement of this new adventure shines in her eyes. Terrible? Or beautiful? 
 That's when I realize... it's all worth it. She'll be okay. I'll be okay too. No matter where this journey leads us.

"I am a parent of a child with special needs. My life isn't glamorous and it is full of hard work everyday. I go weeks before I realize I need a break. But in the end, the gifts of joy I receive with just an inch of progress - are quite extraordinary and in these moments I know we can do anything." HOPELights♥ 
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