Thursday, October 18, 2012

Epidermolysis Bullosa And Us

I shared this, earlier today, over on Facebook.
Although, sometimes, it feels like no one reads my blog *echo… insert sounds of cricket chirping*
I thought that I would share it here for those that do visit.

Last night the Aussie TV program “The Project” shared a story about a family.
The story hit me hard.
It hit hard because it was a story that was very familiar.
It could have been our story.
You see their little girl was born with Epidermolysis Bullosa.
Almost 14 years ago our little girl was also born with Epidermolysis Bullosa.
The things they talk about, were things we went through.
The blisters their daughter is getting, our daughter had.

You can read the story HERE
and if you scroll to the bottom of the story you can watch the video from last night’s show
I wanted to share this so you know a little about this rare genetic condition.
I wanted to share this so you know a little more about what life is like for people with EB.
I wanted to share this so you might understand why I think the little everyday things matter
and why capturing life, through scrapbooking, is important.
I have often wondered about sharing more about EB and Megan’s story but haven’t shared much. 
One of the reasons I haven’t is because Yes she has EB but EB doesn’t have her.
Megan is one amazing kid and everyday I feel blessed to have her in my life.
And because I know Megan will read this… I love you Megan, lots!
PS I have scrapped some pages and shared them previously

Journaling “It’s a story that I have been waiting to tell, a story I need to tell, so please listen as I share…
I always knew, as you grew inside me, that something wasn’t quite right.
Just like I knew in my heart that you were going to be a girl, I knew that you were growing in a place that was keeping you safe.
We, Dave and I, had talked about possibilities and what ifs, so when you were born,
and we entered the world of EB, it was no huge shock and we took it in our stride.
Sure we cried and there were days where it was a struggle but we knew you were a blessing
and that loving you meant living with EB. I had to learn all I could about this disorder and I had to talk to others about it, still do!
So why did I need to tell you this? Because one day you might have kids of your own, I hope you do, and one day you might have a child of your own,
a child that needs that little more lovin’, loving that comes from a place in your heart that you didn’t know was there.
So I write this in hope that you realize you have the strength and the love to get through these challenges,
that there are people around you who will support you through the hard stuff and above all that, that you are loved VERY much and always have been!”
and also this page
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  1. I am glad that you are sharing! Your story and your documentation about this is important and I love how scrapbooking makes us learn so much. We learn from each other and it makes us grow. *hugs*

  2. I saw that show last night and my heart just broke for the family. I had no idea you had a little one with this. We all have our issues we have to work with. My youngest has severe eczema. I know it is nothing to compare with being a butterfly child, but again, I feel I can somehow understand. At one stage were were having to pin our son down in order to administer his cream. Big hugs, but I know you are a strong woman and with the help of Dave, you will help the squirt get through.

  3. Megan is such a beautiful girl. I always tell you I love your stories. I do.

    The blog looks fantastic! Did you do it? If not who? I am in desperate need.

  4. think i just trod on a cricket....

  5. Sorry for the crickets. As I mentioned on my blog I have hundreds of unread posts from blog friends and feel really bad about it. I don't delete them because I want get around to them.

    I remember reading about her EB before. I always forget about it because she is such a great kid and you all are so active. She will look back at this page and remember how much you wanted her and how much you have done for her.

  6. Hi Sharmaine, you're right, the readers & FB are making us lazy to really read the blogs. YOURS is looking amazing, so glad I visited again. Thanks for sharing this today, it would be interesting to teach us more? Hugs, C.


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