karen santorumOne of the most emotionally gripping moments of the CafeMom Coffee Breaks with the Republican candidates was this candid conversation with Rick and Karen Santorum speaking as parents. The couple opened up about life with their daughter, Bella, who has Trisomy 18. No matter what your political persuasion, their story of caring for a special needs child is touching.

I was especially drawn to Karen's perspective. She told another mom of a special needs child, "The sad thing is, you frequently have to turn into a mama bear to get the care, and I could talk to you for weeks about stories -- Bella's first year was really a challenge." That sure sounded familiar. My youngest sister has cerebral palsy, and I remember the way my own mother turned into a "mama bear" to get the care she needed.

You would think that when you have a special needs child that health care workers, educators, and everyone around you would be sensitive and accommodating. But no! And if you think you're protected by laws and policies, think again. You may have to fight tooth and nail to make your child's life comfortable and valued.

Insurance companies often behave in ways that make them look as if they care more about protecting their bottom line than in insuring the best interests in your child. (Um, I'm putting that as delicately as I can, but I think you know what I mean, right?) My mom has spent a lot of time and energy doing battle with her insurance over everything from wheelchairs to assisted communication devices. And when it was time for my sister to start school, my mother wanted her mainstreamed. She's not mentally challenged, so why should learn with the mentally-challenged children? That was another major battle -- which she eventually won.

When we think of maternal attributes, we think of "soft" words like caring, compassionate, loving -- but I think moms have to be assertive, brave, and determined, too.

The one big battle mama bears often don't engage in, though, is the fight to preserve their own sanity. Caring for a special needs child comes with unimaginable blessings and surprises, but it's also incredibly draining! At the very least, I wish we lived in a world that could be more patient and compassionate with mama bears. They deserve it.

Have you ever had to go "mama bear" in order to protect your child's health or care?

 

Image via CafeMom Studios/YouTube