Celebrating Seven!

“Happy Birthday Claire,” I whisper to her as she wakes to greet her seventh year of living the miracle that is her life. She smiles immediately and says “Am I seven?” And so begins her happy day of  birth.

But the truth is, I don’t celebrate this day. Birth day  is a bitter sweet memory.On that day I was happy,but the medical professionals were not. I was positive,but the  medical professionals were not. I cried tears of joy when I saw her sweet little face, and medical professionals reminded me that my joy would be fleeting…her life would be short lived.
Seven years later I sit in full view of the miracle before me. I fight the haunting of those days and choose to see all the happy of this day. She is the gift of this day, she is the joy that prevailed. She is the reason our lives have been made whole. We can’t listen to horror stories,or dismal words of a medical world that sometimes does not believe that God is bigger than any of all this.

Truth be told I don’t celebrate Claire’s “birth day.”

I celebrate the very first breath that she was never supposed to breathe, I celebrate each and every moment of the life that God has placed in my presence.  I celebrate a life that was never supposed to be of quality.  I celebrate her full beautiful life today,because there are no guarantees of what tomorrow holds…that is what makes today and everyday a very precious celebration.

The truth about today is that I celebrate Claire’s life just as any other day and I see her proving that God is bigger than any of all this.

And as she fell to sleep this evening, she was smiling still, asking “Am I seven?” I said, “yes,you are seven.”  Closing her eyes with a sleepy smile she whispers “seven.”

Hello God in the celebration of today and the sleepy whispers of a growing miracle…Hello Butter

 

 

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Scars Bared

Her shirt off and scars bared, no care in the world, only reading. Or imagining or just plain living in a world of five years old. She has learned far more than doctors diagnosed. She would be blind, deaf and unable to speak are words that echoed in my mind for awhile. Until she started to live, breathe and overcome or hurdle over all that stood and stands in her way.

A much needed breath of thanksgiving , after a holiday seizure tried to steal it away.

There in this morning sun, she reminds me of hope, hope for days of joy, peace and a love that transcends all understanding.

It is God here in this morning. God that shines through her naked, scarred body to read words that only she can see. Oh how grateful I am for these everyday miracles, smiling small moments of brilliant light. God’s light through her. Small moments big …Moments of Hello God Given Miracles…Hello Butter

1000 gifts…adding this and still counting…

 

© 2012 hellobutter

SUPERGIRL~CLAIRE

Miracles happen! Short but sweet video of our amazing supergirl!

 

 

“Unspeakable,unending,thanks be to God…”

Awareness & God

November is Epilepsy Awareness month. I am spreading awareness by sharing some very amazing news.
We were at Pittsburgh Children’s a couple of weeks ago for a 24 hour EEG. Today, I spoke with our neurologist’s nurse. She told me that Claire’s EEG was looking normal! When compared to all of Claire’s previous EEG’s this one was the best.
Does this mean Claire is cured of Epilepsy? No. She still has Epilepsy. This just means that during the 24 hours on the monitor, she had no seizure activity. Her brainwaves still show she can have seizures. She just isn’t having as many(a few small ones now and then) and had none during the testing.
So,  this is great news and a huge improvement from previous testing which showed lots of seizure activity. She truly is 100% better and is functioning at such a better quality of life. Her smile says it all!

I am giving all the credit to an amazing God who keeps working miracles in the life of this special child. I know for certain we were directed to the right plan for her by His hand. We chose the ketogenic diet, but not before praying and listening to what God placed in our hearts. I have always made decisions for Claire in this way. I know its right when I feel a peace about the decision. And let me tell you my heart is at peace. Not only do I feel at peace, I am also joyful in the love I feel God shower down upon us!
Always trust, never stop praying and find a peace only our loving Father can give! Miracles happen!
So, I am confident today to be able to say….
Goodbye seizures…Hello Butter!

Butter Birthday Bliss

Our first birthday party on the ketogenic diet was a success. I think it was even better than previous parties because I was not focused on food preparation. Instead, we had a tea party for Claire. It was perfect since the food consisted of mini versions of quiche, cheesecake,  & eclairs all from the GFS store. Easy, take out of the box & make pretty on a plate.

 
Claire was happy with her chocolate cupcake made from a recipe on the myketocal website and figured portions on the ketocalculator. I don’t think it was the best cake she has ever had, but I think for my first try it wasn’t too bad. I used finely shredded coconut instead if coconut flour, I think it was a little too  gritty.

Birthday cake on the ketogenic diet

She is allowed herbal tea, but we haven’t found a flavor she likes. I’ve even tried apple tea to replace the apple juice she loved so much. She has been happy with drinking water and just one diet caffeine free pop a day.

We are still missing ice cream and she does not like the frozen cream with fruit that she is allowed. So we have replaced ice cream with plain shaved ice. I do use sugar-free syrup occasionally to make it more of a flavored treat. But we try to limit artificial sweeteners, especially if she has had her diet pop.

Our family loves a good spread at a good party, but we really didn’t miss the food. We just enjoyed the being together to celebrate another year of God’s blessings in the life of our amazing miracle girl.

 
We keep asking Claire ” how old are you” and she grins her big sparkling smile and says “I’m four…where did three and a half go?”  so today we say…

 
Goodbye three and a half…Hello Butter