Tuesday, December 10, 2013
Blogger Challenge
Wednesday, December 04, 2013
I RUN 4
Growing
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Monday, December 02, 2013
SPD and Winter
So its December,
Its cold and Luke is outside in shorts and a T-shirt. And not due to the fact that the boy doesn't have a dresser full of pants, a closet full of shirts and jackets galore.
Wintertime used to be one of my favorite seasons, I loved snow, the changing leaves, the cold weather. But to live the changing season through the senses of my boy, has me rethinking my love for winter.
He can't help it, he doesn't like the feel of clothing on his skin. Coats and shirts are too scratchy, pants are too tight, socks above his ankles burn his legs, he will hate you for days and cry if you put a coat on him. Its probably one of the hardest things to do, to watch your child feel the world in ways you can't. And the hard part is that he doesn't know he feels the world differently.
We go through this every morning, its exhausting just to get him dressed for school. These are days I long for him to be normal. And not to say that I would ever really want him any other way, I love him the way he is. He is special, he is strong, he is unique. But some days I feel it would be so much easier to just get up and be able to dress him like any other child. Send him to school in a cute polo and some khakis, but that's just not gonna happen. I no longer fight this issue. If he wants to dress in a t shirt when its 30 degrees outside. Then he can, the way I see it, as long as i get him to school in clothes, any clothes, then I won. I accomplished a major milestone for the day and we are one more step to greatness.
I truly hope the seasons get easier for him. I hope the world gets easier for him. But either way he will get through his struggles, even if its in shorts and a T-shirt in 30 degree weather.
Wednesday, November 20, 2013
a friend
I have never been a person with many friends, I am not one to open up or share my deepest secrets. I don't say I love you lightly. I am bad at saying I am sorry.
Whether it's from losing people I thought were friends, or from being a daddy's little girl without the dad. I am this person that hides their feelings. So it takes a special person to come into my life to make me want to share.
Saturday, November 16, 2013
Today is the Day
Although Zach has had a lot of medical problems and has spent more time in the hospital in his 4 years than most people do in their lifetimes he is doing better. There were times he faced infection, sepsis and even a transplant evaluation. He has been through feeding tubes, central lines, blood transfusions, iv nutrition, too many tests to remember or name and too many days away from just being a kid.
Make a Wish put a smile on his face when they asked what he wished for. "Mickey Mouse house" was his exact words, he loved Mickey Mouse and every time he watched a movie and the castle appeared in the previews, his face lit up. So when Make a Wish told him he was going to Disney World he was estatic!
To people who do not have special needs children or do not know what it is like to sit by your childs hospital bed day and night and just wish they could come home, you might not understand the value of Make a Wish.
But to us, to the families that have been touched by them, it is unexplainable. To get a week of no tests, no appointments, no hospitals. Just your child being a kid, and playing and laughing. It will be forever in our hearts what it was like for that week.
And some kids are not like Zach, some kids do not recover or get better or have remission. Knowing so many families that have lost their children to these life threatening medical conditions, makes me cherish Make a Wish so much more. Even those some of the children are no longer with us, their families remember the joy and time they got to spend seeing amazement in the eyes of their little ones.
So today, we give back. Today is Walk for Wishes. Teams have raised money to help grant wishes for children.
So Team SuperMan in honor of Zach will be there showing our support of this amazing organization.
You can read Zach's story from the beginning starting here..
The beginning