spe•cial
Pronunciation: ’spe-sh&l
Etymology: Middle English, from Old French or Latin; Old French especial, from Latin specialis individual, particular, from species species readily distinguishable from others of the same category : UNIQUE
I hear the word “special” frequently in the day to day care of Gage and Quinn. They’re special needs kids. It’s a label. We can’t deny it. We’d prefer they weren’t labeled, but it does get the point across to people quickly.
In some medical circles we’ve been referred to as “the special Atlanta family” or “the special kids with OMA AND ARPKD” because of the kidney problems – and the probable hybrid kidney disease (with the vision disorder thrown in for fun) the kids have. Turns out, the kids’ condition could be so special, they don’t even have a name for the syndrome they probably have.
Then there’s special education, needed for their special needs. We’ve gone through the process of the county’s evaluation system for public education because Gage is entering Kindergarten. He needs a lot of help. A Special Education Teacher each day, to help him in the classroom to assist him with his deficiencies and his vision disorder. Plus OT and Speech a few times a week. His Special Education IEP (Individualized Education Plan) is in order, and the person in charge of Special Education has it already. We’re thrilled to have found what we think will be a warm and welcoming place for the kids and their special needs. We think it’s a special place.
I’ve dealt with the fact that the kids are special needs kids a long time ago. Every once in a while something might make me a bit sad about the challenges they face. Most recently, a couple of friends have had new babies, and I have a twinge of jealousy. Not that they have a healthy child. But that I won’t ever have the blissful ignorance of my healthy child in my arms again. I long to remember it felt like, before any diagnosis or therapy or treatment, but I just can’t.
Gage and Quinn are special, no doubt. And sure, it’d be my preference for them not to have developmental challenges or face life threatening surgeries due to a chronic illness. But understand this: if my only option was to have these kids with these special needs, well then, no question, it’s my special privilege to raise them.
Julia
I want to first thank you for the bama referal. I set up Malia’s appointment today and we will be going the end of September. I am already impressed by them, no waiting for test results to come back, a doctor who is organized, Pinch me I must be dreaming. But most of all i want to thank you for sharing your experiences with others. As you know i am a new parent to Pkd or possible Pkd. When I began my search for information on this i was frantic and thought the worst. Reading the information off the internet was only making matters worse. Then i was put in touch with you, and things began to change. Before speaking with you i felt dispare and was not sure how we were ever going to get through this, After our conversation i was filled with new hope. Our conversation was fairly short but just knowing that i was not alone in this battle ment more to me than you know. I just want to let you know that Quinn and Gage are Special. They are changing the lifes of family’s all across the world. I personaly would like to thank both of them for giving our family the hope and strength to cope with the unpredictable future. And a big thanks goes out to you Julia for being such a wonderful advocate for your children, your family really is making a difference. Thank you for renewing our Hopes and Dreams.
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