serious enough & not so serious
I resonated with this:
This seems to me to be one of the central dilemmas of being a special-needs advocate right now — how do you make a disability look serious enough for people to want to help, but not so serious that it seems helpless and hopeless? Serious enough to merit a cure, but not so serious as to be better off dead? Serious enough to require educational programs, but not so serious that you don’t want that child in your child’s class? Serious enough to make prevention a priority, but not so serious that people are afraid to get a diagnosis? Serious enough to get attention, but not so serious that we forget there’s a child behind that label, a quirky and invaluable human being?
In my albeit limited experience parenting with the special needs of my daughter, I’ve found that this can often be a tough line to walk. Outside of our immediate family, there are many that either just don’t get it - no matter what we say - how different life is and will be for Isa (and for us). I sometimes want to carry a picture of the CT scan & find myself over saying “cerebral palsy” in hopes something will sink in.
And then there there is a whole other side of people in our lives that overreact, who need regular reminding that Isa is a beautiful little girl with a full life ahead of her. I proudly show off the b’jillion photos that capture her beauty. I have to talk about what a tough kid she is - could you have survived a stroke before you were even born - and the multitude of evidence for God’s grace and presence in how she is developing and growing up.
Too even point out the conflict feels a little petty, but at times, so does living in the midst of it.
p.s. Isa ate Chereos today - cruching 4 of them in her front teeth & swallowing without issue - for the first time. For those of you following along at home, you know that is really exciting… somewhere between serious & not so serious.
May 14th, 2007 at 4:48 pm
mmm…Chereos…what childhood is complete without them.