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Five Words I Want To Say

Five Words I Want To Say

I’m equally skilled in vocalizing my displeasure, disagreement and anger over the unfairness, inequality and lack of inclusion that surrounds the special needs community.

And I’m honest and candid about the joys, the beauty and the humbling experiences that come along with raising a child with a disability.

But the five words I want to say over and over again are; I Wish You Already Knew!

I Wish You Already Knew: The pain I feel knowing my son’s birth injury could have been avoided and that there isn’t a second of the day I don’t think about it.

I Wish You Already Knew: The fear I continually have wondering how I can financially provide all the out of pocket medical, therapy and equipment costs that insurance refuses to assist with.

I Wish You Already Knew: That my real personality is in no way aggressive or confrontational or combative, but that I’ve had to throw that all out the window in order to be heard and advocate for my son.

I Wish You Already Knew: How hard it is to push a wheelchair, a grocery cart, hold a typical toddler’s hand and try to shop quickly through the store.

I Wish You Already Knew: That I’m scared about the future and who will take care of my son when I’m either too old or no longer here to do so myself.

I Wish You Already Knew: The overwhelming feeling of falling short with the therapy and resources and finding all the best opportunities to give him the best quality of life.

I Wish You Already Knew: How painful it is when you verbally say things like, “if we prayed harder he’d be cured,” “that it must be your fault that he’s disabled,” or "you should have aborted him before he was born,” and how selfish I am because I allow my child to continue to live.

I Wish You Already Knew: That I’m so tired because I haven’t slept in years for fear that my son will have a medical crisis in the night and depend upon me to be there to rescue him.

I Wish You Already Knew: All the things that goes along with parenting a child with special needs so you’d understand what I am feeling, experiencing and going through. I wish you knew so you could offer me a hand or embrace me in an understanding hug instead of intensifying my pain and challenges.

I Wish You Already Knew: All the things I shouldn’t have to say.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Stacy Warden

Meet Our Blogger

Author of Noah's Miracle blog. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own.

View Stacy’s Profile

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