Saturday, January 2, 2010

Leah Has Earned Her Wings

Little Lady Leah

Her mama posted:
"I just rocked her and told her: "No more pain, no more blood, no more hospitals, no more EB". All I ever wanted for her was to be pain free and happy - and this is the only way that could've happened. I know she's in heaven - EB free and beautifully perfect. I know all my grandmothers and great-grandmothers are passing her around, loving her. I know she's smiling that Leah smile with those big blue eyes. She will never be alone and will never be in pain again. I know she'll always be with me, watching over me - and I know I will see her again some day and I'll be able to hug her as I never could here.
Golden slumbers fill your eyes
Smiles awake you when you rise
Sleep pretty darling do not cry
And I will sing a lullaby"

Leah earned her wings December 31, 2009
This entire section is copied from Leah's blog site *********************************************************************************
"What my Leah is doing today:

Thanks everyone for all the messages and comments. I had no idea how many people had fallen in love with Leah over the past few months.

We're doing ok - I haven't fallen apart today .... yet. I'll try to keep everyone updated on everything but for now I don't think we will have any funeral. We may have a memorial service at some point - perhaps on what would have been Leah's 1st birthday. We really don't know. We haven't even called the funeral home yet but we know we will have Leah cremated so we can keep a part of her close to us at all times. I've already found a butterfly cremation pendant that I can wear all the time next to my heart."
I first learned about this disease when I found Jonah's blog. Jonah, Tripp, and Little Leah share the same disease, EB, short for an extremely rare genetic skin disorder called Epidermolysis Bullosa . These children face a life of painful blisters, hair, nail, and major teeth issues, as well as the possibility of respiratory involvement. Their first child, Gabe, was stillborn at 37 weeks. "He was only here with us a short time, but we treasure every single moment." They suspect EB is the cause of Gabe's death. Patrice's blog says, "We know that no matter what happens with Jonah, God will be glorified. We can't wait to see Gabe in Heaven and can't wait for Jonah to meet his big brother a long, long, long time from now after he's old and gray and lived a long, full life. Please pray for a miracle for Jonah. We are."


Jonah's mom, Patrice posted, "I hate EB with everything in me. I was already having a really hard time before Leah died, and now the things that I had learned to accept and deal with are making me so angry again. I just burst out into tears today when he rolled over and tore the skin off his forehead. He can't even do something "normal" that should be exciting without hurting himself and crying in pain. These poor kids. I just don't get it. Most days I'm like, "Okay this is our life. This is what we do. No big deal. We'll just do it." But I'm now in a phase where I literally think about what EB is, what it really means, and I'm mouth agape in disbelief. When you really think about it, isn't it just one of the craziest things you've ever heard? Some days, I just can't believe this is real. And even though I never got to meet her in person, I miss Leah a lot. And I'm so sad."

These 3 children are precious children of God, and children of parents, and grandchildren of grandparents, just like us. I have really felt for these families and kept up with them through Caringbridges and blogs. I can not imagine the pain and suffering. If you have time, please visit their sites and pray for them. It would mean so much to me and to them if you pray for an end to this horrible disease and for comfort for Leah's family. I also know it means the world to them to receive your notes and comments. They are holding on but need all the support they can get. Thank you!

Tripp can be found at: or


Kelly @ The Beauty of Sufficient Grace said...

Oh Carol...I just don't have words. There are none. But, prayers...that I can do. I would love to send this family a Dreams of You Memory Package if they would like one. Do you know how I may go about doing that? (If you think they would like one. I don't want to impose...just want to reach out in love.) Regardless...I will pray God's continued comfort and sufficient grace for this family as they miss their sweet Leah.

Thank you for sharing this...thank you for your beautiful heart.

Much Love,

Annie said...

This brought tears to my eyes...I am heading to each of these blogs to offer my prayers. Thank you for sharing what these families are going through.

Anonymous said...

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Jennifer @ Getting Down With Jesus said...

My heart is breaking. What a beautiful tribute to these children, but so, so, so sad. I'm just in tears over this. Thanks for sharing these stories with us.