Grace for Rett » Grace's Life with Rett Syndrome

It’s been a year…

This week, it has been a year since we took Grace to the hospital after she had so drastically changed from a mentally present, vivacious little girl into a limp, disinterested newborn. Staring at her hands, ignoring her own feet, crossing her eyes and head tremors. It was all very scary, especially when we were ushered straight into a hospital ward on arrival. We didn’t even sit in the waiting room – we were instantly ‘in’ and being poked and prodded by doctors. After we knew that Grace would be staying in hospital overnight, Steven went home to be with the boys and I just called my dad and we both cried on the phone. “I think she’s going to die” I said. For the next 6 weeks, without so much as a whisper of the name of a condition for us to hold onto, I sat in my house, watching my baby go backward every day. Like Benjamin Button.

I didn’t eat. I just cried. I lost about 10 pounds.

One day she could roll over. The next, it was gone. One day, she just laid in a fetal position like a newborn, staring at her uncontrollable hands. I’m sure the doctors in the hospital regret not covering their name tags because I remembered all of their names and called the ward repeatedly. “Does she have Muscular Dystrophy?” I demanded. “Cerebral Palsy?” No one had the guts to tell me that she’d already been tested for Rett Syndrome and that the appointment I was waiting for was to actually tell me that my little girl had the dreaded brain disease.

I said to the head of the ward, “Do you really expect me to sit for 6 weeks not knowing if my baby is going to DIE?!” She just said, “It’s ok to wait 6 weeks.” She knew.

It’s been a year and I think my heart has gotten used to the pain. It’s always there, but somehow I can forget it for most of the day. But behind the pain, behind the ache I have to see my little girl stand or even just sit up (or use her hands for goodness sake!) is the knowledge that God has a plan for Grace. And when I see how much people love her and how much she gives to them, I know that good will come of our life with Rett Syndrome.

Jan - October 22, 2010 - 4:00 pm

I can’t imagine the roller coaster you must have ridden, and probably still do. I can’t put myself in your shoes, impossible without living through something like that.
I can offer reassurance that you’re so right in your conviction that there is a plan. She is in your life for a reason. Who knows what that may be? Or maybe you already do 🙂
Hugs to you and yours, Elizabeth.

Sarah de la Hoyde. - October 22, 2010 - 4:12 pm

Hello Elizabeth,

I have been a fan of your photography for a few months now and follow your facebook posts

Sarah de la Hoyde. - October 22, 2010 - 4:16 pm

Hello Elizabeth,

I have been a fan of your wonderful photography for a few months now and follow your facebook posts.

This post about your experience with Grace’s condition and diagnosis brought tears to my eyes. I can’t begin to imagine what that was like! I absolutely agree that our amazing God has a plan for Grace’s life and a purpose, and hope and pray that you can continue to hold on to that assurance every day.


April Merrick - October 22, 2010 - 4:19 pm

You amaze me with your positive attitued and faith. I have tried to keep those same things going in my life, but find it very difficult at times. I fear I fail Him. You are an encouragement to me. Thank You.

Shannon Lewis - October 22, 2010 - 5:02 pm

God bless you and your family, Elizabeth.

Susie - October 22, 2010 - 5:16 pm

Love and hugs to you all xxx

Adriana H.G. - October 22, 2010 - 6:16 pm

Hello Elizabeth,

I’ve been a fan of your photography for some time now. I love your blog, your tutorials, and your photography. But most of all I love your attitude. Toward photography. Toward life.

You are certainly a very brave woman, and an inspiration for us women all over. You are fighting for your dreams AND taking care of your family, and that’s HARD WORK.

You keep it up girl, God is with you and your family, and little Grace is so beautiful, I’m sure He’s got something wonderful in her future and yours.

God bless you and your family. Big hugs from a fan.

EULALIE ALPHONSE - October 22, 2010 - 7:37 pm

Grace is always in our thoughts and prayer. We can not imagine the pain and the emotional roller coaster this must have been. Be encouraged, be strong. God has the master plan in all of this. We love you guys.

The Alphonse Family.

Elizabeth Jury - October 22, 2010 - 7:55 pm

Hi Elizabeth. I have just started following you on Fb. My gosh I had no idea of what life has thrown at you and your family, and yet your your attitude to life is inspiring and your work is stunning. With love and blessings from my family in NZ to yours. God Bless. Elizabeth Jury. x

Dot McQueen - October 22, 2010 - 8:35 pm

Every time I come to this inspiring blog I stare at all your photos of Grace – they are so incredible. She is so beautiful!

Wanda Kolo - October 22, 2010 - 9:15 pm

You and your family have been through so much and continue to go through so much…But, you all do it with such faith, love, hope, and GRACE! Grace has touched my heart forever…There are so many lives that Grace, you, Steven, and the boys will influence and you may not hear of them all right away. When I look at your family I see one filled with great love and purpose! God has blessed you with three beautifully amazing children and I enjoy watching what wonderful parents you and Steven are to them. Love you, Wanda

Jenny - November 5, 2010 - 10:05 pm

This little girl is amazing and beautiful. Thank you for being willing to share the story of your family on this blog. I think seeing and reading this will be comforting and encouraging to many people. You just never know how your life will affect others. I pray that God continue to bless your family with courage, strength, and countless moments of joy.
Jenny : )

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