One Moment in Time…

kodi

Copyright to America’s Got Talent

To be honest, I had to wait over a day to try and write this post. And still, I start crying; I ramble; I’ve looked at what I’ve written and while to a special needs’ parent it may look coherent, that would’ve been about it. So, I’m trying again and grammar and coherency be damned.

*I am only writing from my perspective. I am not assuming to know how anyone else feels. ๐Ÿ™‚

There is a Whitney Houston song, “One Moment in Time”, written for the 1988 Winter Olympics. Meant to be an inspiring song about the athletes, their years and years of work and sacrifices all for that-

“one moment in time
When I’m more than I thought I could be
When all of my dreams are a heartbeat away
And the answers are all up to me
Give me one moment in time
When I’m racing with destiny
Then in that one moment of time
I will feel
I will feel eternity”

But, as a parent of a special needs parent, it is also my hope for my child, and truth be told, for myself.

For those who watch America’s Got Talent or is one of the millions who have already watched Kodi Lee’s audition, I’m willing to bet, you cried. Like me, like, well, everybody. But, have you asked yourself WHY you cried. Those of you who don’t have a special needs child in their lives… Why did YOU cry? Because, I can’t fathom it. I can only watch that audition from the viewpoint of a parent with a nonverbal child. And my tears are for his mother.

You see, I KNOW what that moment must have felt like, that moment she talks about when she says “he started singing and… I was in tears” And when I watch this video (over and over) I think of all the Rett syndrome moms out there who’ve dreamed of such a moment- a true glimpse of what could be; a real, undeniable glimpse into the world of their child; a moment when you KNOW on some level, an amazing level, that your child is going to be truly seen and heard and accepted. A moment where people will see past his “odd” behavior; a moment where people forget he’s “disabled”, “autisitic”, ” blind”, “not normal”. And Tina Lee, Kodi’s mom, got her moment and my heart just burst for her.

You see, when your perfectly normal child eventually learns to speak it’s exciting, but still expected; when your child is NEVER expected to speak to HEAR them speak becomes a joy on an whole other level.

We dream of “one moment in time” when it all comes together and a miracle happens. And sometimes we get it. Just this one small, tiny and yet immense gift to remember for always… a child who can’t speak while awake, but calls for “mom” in their sleep; a child who has not once fed herself grabs a chip off a stranger’s plate; a child, who for just one single day doesn’t have a seizure or doesn’t scream; a child who is excluded at every turn and then goes to a different school and FINALLY has friends. These are the stuff of our dreams and when a mom gets that moment, when they can stop worrying for just one day, or better yet know that for all the days coming, their child has permanently managed to bridge this vast gap between being on the outskirts always looking over the great divide of “normalcy” you can’t help but cry tears of joy for her and for the hope that brings toย  you as another mom, waiting and hoping for the same.

I had such a moment, and I know that other moms have cried for me, because they’ve told me so, and for the same reason- for me and for the hope they were given. With the words “You’re a cute guy,” during the Trofinetide trial, my daughter handed me that moment on a silver platter. I got a glimpse into what was possible- that my daughter would have a chance. A CHANCE. And that is no more, no less, than what we want for all of our children. A CHANCE. The greatest gift. And, it never becomes less of a gift, this moment in time. I could see it on his mom’s face. And you know why? Because the fear of it being taken away must be around every corner. So, you never, ever take it for granted.

So, I do wonder why others have cried. Have they cried because as mothers in their hearts they inherently know what it means to his mother? Were they just brought to tears by the miracle of music and the gift they received because of it? Were they crying because they realized it could’ve been their child and would they have encouraged this connection or believed it wasn’t really possible and so it never was?

But, I don’t wonder why, for me. I know. I cry for his mother and all the mother’s still waiting.

I know dad’s are out there feeling the same, and I hope this moment for you as well.

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This entry was posted in America's Got Talent, boys with Rett syndrome, Communication, hope, Kodi Lee, Music, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Special needs siblings, Trail to a Texas Trial, Trofinetide and tagged , , , , , , , , , , , . Bookmark the permalink.

3 Responses to One Moment in Time…

  1. Rose and Renee says:

    Mel
    As always, well said. I cried all 3 times I watched it. I think I cried because of the happiness music brings to Cody, they’re happy tears but reading this, and crying again, I realize some of those tears are sad tears for Renee. Why can’t she be that fortunate? Alls I want is good health and happiness for her. I light up when she smiles but sometimes it just isn’t enough for me to believe she is happy.
    More freaking tears. Sigh๐Ÿ˜ฎ

  2. melelllan says:

    I think I agree with you, as I think about it; some of my tears are for Katelin; but I know sheโ€™ll be this lucky soon xo Hoping so much that Renee redos the benefits ๐Ÿ’œ๐Ÿ’œ

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