Holdin' Out for a Hero | Original Link
by Laurita Tellado
October is Spina Bifida Awareness Month. We’ve just made it past the half-way mark, and already I’m feeling like a broken record.
I’m angry. I’m sad. I’m frustrated. I feel helpless. And all because it’s October.
October is Spina Bifida Awareness Month.
It’s also Everything Else Month.
I’m not angry at the other causes– breast cancer, down syndrome, domestic violence– how could I be? They are valid, serious causes, every bit as worthy and deserving as spina bifida of being recognized and honored and supported, not just in October, but every month.
I’m angry because the excuse that many people give to not support the Spina Bifida Cause is because they are busy supporting these other causes.
I’m angry because they don’t get it.
I’m angry because they believe spina bifida is less serious. Less worthy. Less important.
On Monday, I visited Nicholas in the hospital. Nicholas is an eight-year-old boy with spina bifida and hydrocephalus.
Last week, he was the victim of an unexpected, traumatic and heartbreaking incident when he was attacked in a park. While I won’t go into the details here, because it’s a situation that has caused his family– and all of their friends and loved ones– so much pain, suffice it to say he suffered two concussions and began having frequent seizures.
These seizures could be enough to cause him irreversible brain damage. He already has developmental and speech delays because of the many neurosurgeries he’s had.
How is Nicholas doing now? Thank God, he’s out of the hospital, as of last night. I’ve been in frequent contact with his mom, Cheryl, who is my very dear friend and who slept at his side every night in the hospital. According to her, his seizures are now under control, but only time will tell if he will get back all of his cognitive functions.
He’s not himself right now, she told me. Indeed, when I went to see him on Monday, the usually cheerful, calm eight-year-old was impatient– he even walked right out of the hospital room at one point, determined to visit the playroom. When he didn’t get his way, he growled and screamed unintelligibly, clearly frustrated.
Cheryl noted that he never behaves this way. She misses her sweet little Angel.
There was one moment that stood out in a positive way for all of us, when a young hospital volunteer stopped by to perform magic tricks.
Nicholas lit up. His mother, and all of us that were in the room with them, watched in amazement as Nicholas even verbalized what he was feeling. He wanted to know “how he did that” when he demonstrated a trick. He walked right over to the young man and did not take his eyes off him the entire time.
Watching him was, indeed, magic.
Of course, many causes will demand your attention– this month, and every month. All of these are important, and we should take the time to learn as much as we can to help those we love– and ourselves– prevent illnesses and other devastating circumstances.
But, to a child living with spina bifida– and to the family that cares for him or her– often, there is no frame of reference outside of spina bifida. Sometimes, there is no escaping the uncertainty and pain that comes from knowing that someone you love is suffering.
There are plenty of moments, like the one we witnessed with Nicholas, when you get a glimpse of hope, of recovery, of that return to the simple joys of childhood as it should be.
During those moments, we try to choose to hold on to the moments we’ve enjoyed– the moments that make us laugh out loud, even through tears. The trivial moments. Sometimes one trivial moment can matter more than 1,000 serious moments.
But, my anger remains unassuaged. People still dare to question why this matters to me.
I can only think of one good reason:
because I’ve been there, too.