By Cynthia Smith Huhman 
“Write what you know! Write what you know!” What I know is special kids – they’re all special, right? Kids with special needs, they’re kids with kind hearts, creative minds, and a desire to fit in and behind them all, a fierce mama that loves them.
“That which does not kill us will make stronger” or “God only gives challenges to those who are strong enough to handle it.” I’m not sure how many times I’ve heard that but lately – it’s a little too much. Thank you, but even a strong mama just wants a simple hug and someone to say it’s going to be OK.
As moms of special kids we love our children to the moon and back, but we often envision a life without doctor appointments and mounting paperwork.
I’m sitting, encouraging my daughter to stay awake – they’ve ordered her to be sleep deprived for yet another test. I remember when she was little and we just worried about a scraped knee. Boy, we had a lot of those!
As our children age and mature, we enjoy watching them become independent and learn to self-advocate, make friends, go to prom, find a path, discover a career and find a job, maybe enter college. For some of us that’s only a dream. We mourn the child we dreamt of having and continue to take care of the child we were blessed with. Some will criticize my choice of words, but “why” has crossed my mind more than once but that doesn’t mean I don’t love my babies just the way they are. I have been given the most loving soul you’ve ever met.
Raising or caring for an individual with special needs isn’t without its challenges that’s for sure. It takes a toll on your life, your relationships – everything you do will revolve around them. I can’t always go to my son’s sports activities out of town, who would pick her up from work? I can’t always attend that conference I wanted to take outside of town, who would make sure she’s taken her meds, washed her face, and make sure she’s eaten something other than chips and a soda? You become so consumed with their needs you forget your own. We have little time for friends, there’s very few nights you have the energy to see a movie, and even less time for a simple glass of wine with the girls. We spend our time comforting our kids, wiping their noses, and doing our best to make them feel special.
My own mother told me this week, “If they had a Mother Hall of Fame, I’d nominate you.” Sometimes that’s all I need to keep going. I know I’m doing something right. I know I’m doing my best.
We’ve met a goal this year, there’s a glimmer of light at the end of the tunnel, she’s held a job for full 12 months. She enjoys her job and the staff has been amazing. It’s not the job I had envisioned for my daughter but it’s not about me. She loves it and that’s all that matters.
She’s trying to sleep, I yell! “DON’T GO TO SLEEP!” Ug! “Walk, walk, walk around girl, keep moving, keep walking!” We’re off and running. She’s in tears, she’s mad at her fierce mama! We’re off to another doctor appointment, another test at the hospital – all those wires sticking out of her head and then maybe a journey to find that new coffee shop. It’s what keeps ME moving.
“Write what you know! Write what you know!” What I know is special kids, what I know are special moms and there’s a lot of strong fierce moms out there dealing with much more than I am. What I know is strong or not they need encouragement, a hug, a night out, understanding and maybe a little patience.
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