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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Days Like This

Nearly 7 months later we show up to a large exercise room with therapists that have become like family.

That’s how it is in a world of special.

You can find a familiar love in unlikely places. Like doctors offices, hospitals and physical therapy exercise rooms. Where braces, walkers and total gyms are excitedly anticipated after a long break off, needed time away from physical work outs since seizures stole progress away. But, we brave the risk of over exertion, tired seizure attacks and happily meet up with familiar friends that also happen to be an important part of making her world a more mobile place.

It’s hard work for her when she returns. She moves muscles that are not willing to. She says “I can’t do it” to her therapy friends and they say “We won’t hear the cant word”. She says, “it’s hard” and again the response is encouraging,

“I will ask you to do hard things, but you have to work hard to grow”.

She smiles big and puts her head down to focus on those weak muscles and with determination there is ever so slight movement in tired places. She smiles even bigger knowing she can even through the hard.

We all need days like this, hard but necessary. Working through hard to grow more.Grow more into less of who we think we are and grow more into who God knows we are. It takes hard days like these to see weakness in muscle slowly progress to the places of strength that only God knows exist. We need to journey through hard days to discover a strength that results in living full,simple peace.

God grows hearts through hard days…

Hello God…Hello Butter

Small is Big

 What will I remember?

When my eyes have become tired and mind fading? What will I remember about these days of living full? Of life that passes so quick, of school routines,volleyball matches and football games played? When the nest is empty and the house is quiet and still?

What will I remember?

 I really won’t remember the avalanche of homework and paperwork sprawled throughout the house, or late night suppers thrown together, dirty dishes and clothes piled high. Mini vans full of left over food,gear and Gatorade bottles empty.

  Instead, I will remember the firsts of all the moments a kindergartener has. Her first day of school, her first teachers,the making of her first friends and her first smiles of a happy heart filled with dreams and  learning.

                                                                                                                                                                                                                       Instead, I will remember the smiling first days of a junior high daughter,exciting and full of all things new. The changing of class,the learning of new games and new routines.

  I really won’t remember those news stories in the morning paper,that would make me wonder about one reporters views of hard-fought games.  Hard fought games under the Friday night lights that seems so big, but really in this full life how big is it?

Instead, I will remember my mom heart full of nerves but always calmed by the knowledge that God is on the football field too.

It is the small moments of the game that are the biggest. It is the small moments of this game I will remember. I will remember the small moments of Fridays with bananas and yellow tape and scrubbing white cleats clean,taking priority. The hugging of a player excited to go to the lights, the quick word of encouragement always with a “play like its your last” theme.

I really won’t remember the score, or the yards gained, or passes thrown or even the news headlines.

Instead, I will remember the heart, the character, and the witnessing of God making boys to men. God blessing the game with boys all heart, that grow up playing hard and running fast to a life that is full.

A life full of small moments made big.

Small moments of team helping each other up when they are down, moments of blood, sweat and tears. Small moments of wrapping my arms around a young man learning to win in more ways than a scoreboard will ever show.

I will remember the game,the player,the kindergartener, the 7th grader…all being full of small moments big and just how big God is, especially in the small. Especially in the living full.

I will remember to say Hello God…Hello Butter

© 2012 hellobutter

 

 

 

Let God Google

Did you vote today?

 I like to know as many facts as possible about anything that relates to Claire’s diagnosis. So, when I first found out about Claire’s birth defect, you can imagine my fingers flying across a computer keyboard searching for as much information my 32 week pregnant brain would allow. I was starving for all there was to know about this child I was carrying, before she made an entrance into the world. I wanted to be over prepared for anything that would present itself through the illness we were facing.
Little did I know, five years later I would still be searching/researching and preparing ways to manage this ride of life! Not only do I stay current on the latest medical news available, new drugs, new therapies etc, I also enjoy searching for other families dealing with similar issues. I think when adjusting to chronic illness it helps to find all kinds of support systems. Some times that support may come from strangers that have been found on line.

I truly believe that God introduces people in life to help when you need it most, even if this help is via the net. However, there are times that I can have information overload. I can not spend all my time on Google searching and forget the most important form of support is God himself. It is a fine balancing act but if I keep God first that balance is always kept even. Some days I turn off the computer and let God “Google” me. I let God search all of me. It is one of the ways God communicates to my heart. I am forever searching for ways to become closer to Him, intently listening to His whispers.

This is one of the reasons I am in the Circle of Moms contest. I have already met families that are treading the same path we are. There is so much inspiration from some of the other blogs listed on this site; I am humbled to be included. I am looking forward to meeting more through this group of women. Six million moms belong to the Circle of Moms, now that’s a lot of support!

I am hoping you will include me in your voting this Super Tuesday. (Only two days left) I will not be reminding anyone on Facebook or Twitter today because it is one of those days I am letting God Google.

For the rest of today I am turning off the internet and saying:

Goodbye computer…Hello Butter 

It’s a close race every vote counts!

SUPERGIRL~CLAIRE

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

 

 

“Unspeakable,unending,thanks be to God…”

Living Thanksgiving

 

 

Thanksgiving

Thanksgiving is a time for reflecting on being grateful. Every year I list all I am thankful for praising God for His blessings in my life. Its a long list and a heartfelt prayer of thanksgiving.

I wonder…Is it enough? Is it enough to just say thank you and praise God? On the rainy days life is sure to bring, will  just saying the words of gratitude, be enough to find the sun despite  the falling rain?

This Thanksgiving I will continue with my list of blessings and praise God for all the gifts in my life. However, I will not be satisfied by this act alone. I am working on keeping the attitude of gratitude alive in my heart everyday.

I have hard days when the rain wins and the sun disappears.

I am convinced if my heart is full of grace, not by mere words, but attitude and actions of gratitude I will not only find sun in the midst of rainy days, I will feel Grace from the Son. Then His love will be enough.

Ann Voskamp is an author I had the pleasure of hearing speak last summer. She writes: ” Because Thanksgiving is more than a holiday-its the way to wake up to really,fully living” This idea to live fully and give thanks for all things is what I want to be planted deep into my heart. 
 
Living Thanksgiving in every moment.

I am celebrating His Grace this Thanksgiving by action and attitude so then I can say, goodbye to hard rainy days &…Hello Butter

Read more about Claire’s current health @ http://http://www.carepages.com/carepages/babyclairespage/updates