Being the parent of a special needs child is much like a roller coaster. Often times, youre on this ride alone, unless you have an equally determined partner to help encourage that overly determined child. Even still, this is a ride we are on together....alone. And then there are some who find amusement in derailing that roller coaster, as if the ups and downs are not already enough.
We often hear encouraging words, and those dreaded well meaning but insensitive cliche's. We just chalk it up to someone not really knowing what to say, and there is no ill intent meant. And we try our best not to take offense.
And then of course there are people that do intentionally say cruel and hurtful things. Or at least have ill intent, but we are resilient and try and brush it off. Even with years of experience as a pediatric nurse that works specifically with special needs children, I was far from prepared for my daughter's diagnoses, the care, therapies, adaptive equipment, and countless appointments with specialists.
"But she looks normal". Yes to the untrained, ignorant and judgemental, at first glance she does "look normal". But that's because she doesnt wear her brain outside of her body. She is still a baby and we are learning as we go what her needs will be. She doesnt wear a sign listing all of her medical issues and daily challenges. As her parents, we do not constantly update the world with "woe is me" posts on Facebook for pity or sympathy. She doesnt have a warning alarm letting us know when SUDEP may occur. (SUDEP is an acronym for Sudden Unexpected Death in EPilepsy). We are rejoicing in and sharing as much happiness as we can muster because in the blink of an eye it can be gone. I often find myself speeding home from work in a panic. We take turns losing sleep. We are constantly on edge, waiting for the other shoe to drop. We incorporate physical therapy into every moment of the day to keep her moving and avoid her being in a wheelchair. There is still so much that she should be doing on her own, that we patiently do for her. Sometimes she even has to accompany us on bathroom trips. Her odd neurologically affected sleep pattern makes it hard to plan even the simplest outting. We cant just get up and go when either 1 or both of us is pushing being awake for 24 hours. So if you think we have it easy, think again. If you think having a special needs child is an advantage in any way, or entitles us to benefits of riches beyond our wildest dreams, think again. And by all means, before saying ANYTHING even remotely malicious, remember everyone is fighting a battle you know nothing about. Especially our daughter, who has beaten all odds and exceeded the experts expectations. Together, we will ensure her fullest potential. We will not allow anyone to rain on that parade.
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