Confessions of a Teenage Gamer · The Art of Family

May 14, 2016 ~ Cornelia De Lange Syndrome Awareness Day

Well today is one day that I have been looking forward to for quite a while. One that I have hoped to see and be around for to one day tell those around me that this… This really matters. This really matters to me.

May 14 this year ~ Cornelia De Lange Syndrome Awareness Day

Now I know many of us have those little dates, that maybe might not be quite as known, the may not be quite as important to some others, they might not be quite as applicable, but matter to you as much as any birthday or anniversary. For me, that would be today.

Someone that I have become very close to, the one and only, “Daddykins” once taught me something very important.

There is a thing called judging… And if it did not involve me, it was not my place.

Actually, it was not him who taught it to me, but his beautiful daughter.

Back when she was born, she was so small, they had to dress her up in little doll clothes. A small girl, a small body, but a big heart.

What did this strong little girl ever do to deserve all the laughing and staring and pointing in her direction? What did their beautiful family ever do to deserve having to fake a smile every day outside watching others stare?


All those times he had come to me after a real crappy day… From a little six year old shouting halfway across a grocery store to more troubles from an overly judgemental mother in law… I just remembered the pictures of that beautiful daddy’s little girl.

She is amazing.
And nothing more needed to be said.

Today is a day, not to just acknowledge those that live and grow and fight each day with this disorder to be the best they can be, today is a day to acknowledge those around them too, their families, their friends, their doctors, everyone who has put their heart and soul into loving such a beautiful being. All those – who despite all the times people would tell them how hopeless she was, or all the times others would point and stare, and those people that should have, but did not know how to support them – still kept… Fighting… On.

Today, I would like to take a moment to acknowledge all these beautiful people, and to tell you how much you are loved.

She may not be able to say it, but she loves you… For always loving her.

Happy Cornelia De Lange Syndrome Awareness Day 🙂

For more information, click here.

If you all would be so kind as to pass along this post, it would mean a lot. Thank you so much 🙂


2 thoughts on “May 14, 2016 ~ Cornelia De Lange Syndrome Awareness Day

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