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Tomorrow is a big day for our family. And not in one of those “I can’t wait for tomorrow!” kind of ways. Our daughter, our spirited, lively, full of personality little girl will start a long journey to try and beat Juvenile Dermatomyositis, an auto-immune disease.
I took these pictures on the day of our first semi-real snow storm this year.
I didn’t know that something was starting that would change her forever.
I thought the red cheeks were just wind burn and that I needed to be more adamant that she keep the scarf up to protect her perfect skin.
Or that in a month I’d give anything to see her run.
Or that just seeing her walk normal would be like heaven.
Or that she’d look up at me and say, “I’m scared Mommy – scared of how my body doesn’t work anymore.”
Or that I’d be crying while trying to find a picture book on going to the hospital so I could prepare her for what’s about to happen.
And I always knew she was one in a million, but absolutely sure I didn’t need her to get a disease that affects only 3 in a million to prove that point.
I know that life isn’t fair. And I know that many families face hard things everyday. And I know we will make it. But somehow I wish I could make it so my little lady didn’t have to grow up like this. Couldn’t it be me instead? – I’ve already had all the fun a kid could have playing in the woods, running, playing sports, getting into trouble. She will get to too, I know. Just hard to stay positive in the face of this. But we will. For her – we will.
Amanda,
Thank you for the link; it brings me such sadness to hear that she’ll be going through this. Maura always had a special way of putting a smile on my face! Just a few weeks ago, I pulled out some lessons from last year and I found a picture of her–I’ll have to pull it out again and put it on my cabinet at work as a special reminder.
Know that we’ll be praying for you, Wes, and Maura at Here We Grow, and I’ll stay tuned for updates.
Prayers to you,
Kelly
Amanda,
I am so sorry to hear of the issues you are confronted with. If I can help in any way please give me a call. My background is in Pediatrics, although it was a while ago, I was the head nurse of a peds dept. I may be able to help decipher info or help you prepare Maura for what she is dealing with. If you need anything give me a call at 336-1662 or my cel 621-7688. My prayers are with you, your husband and of course Maura 🙂
Amanda, Wes and Maura,
It’s so hard to think of “our” little Maura having to go through this, I am smiling just thinking of her great little personality, she kept us all smiling,she is such a special little girl, and no doubt she will continue to bring smiles to everyones face, that’s just who Maura is. You are a great family, and you have many people praying for you all.
I have to say Amanda, as I read through your blog, as a parent who’s son was diagnosed with Juvenile Diabetes, I can relate to how your feeling, I remember when our son was in the hospital, and I so wished it could be me as you said above. But God is in control, and as my son said to me when I was having a sad moment, “mom, God doesn’t give you anything you can’t handle” out of the mouths of babes!
Thoughts and prayers are with you all, give Maura a big hug from all of her HWG friends and family!
Dawn
Dear Amanda, Wes and Maura,
Our Jennifer called to tell us she was sending the link to your beautifully writtern site with the amazing pictures of Maura. It has touched us all so deeply. Knowing you since you were a baby, Amanda, you feel as if you are one of ours. And Wes, we have taken you into the fold with open arms. Getting Maura has been like seeing little Amanda all over. Her intelligence and determination have been so evident.
If Maura faces this, she does it with a world of family and friends who will face it with her, You know we will support you and Wes in any way we can. Until then, we send you prayers, love and shared tears.
Love Dan & Peggy
Amanda ours prayers go out to Maura. I know your head must be spinning with so thoughts. Stay strong. Love and prayers to all of you. Carol Baker
So sorry to hear about the struggles that you guys have come up against. We will be thinking of you and praying for you often.
Amanda, Wes and Maura,
I have been thinking about you and I hope that things went well at the hospital. It breaks my heart to hear that she is going through this. I have prayed every night for you!
[…] has been a rough (understatement) year for them, but Amanda has shown so much strength as she has shared her experiences about dealing with her daughter’s chronic […]
I will be keeping your family and precious girl in my prayers. May peace and hope be with you in the coming days.
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