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

Whisper a Prayer

Twas the night before Christmas and all through the house,
every one was stirring when suddenly she became quiet as a mouse.

The stockings were hung by the chimney with care,
when she started to have a seizure and it’s just not fair.

As we fought the urge to arise with a clatter,
we did not rush to the ER because we knew what was the matter.

After awhile she started to awake and her wondering eyes did appear,
She twinkled that bright smile, that is ever so dear.

We took a deep breath and remembered to say,
Thank you God for Jesus and his birthday.

We retire to bed with no signs of seizure in sight,
we are happy to say Merry Christmas to all and to all a goodnight.

And if you dont mind please whisper a prayer to keep Claire seizure free,
So she can experience all that Christmas is meant to be.

Always reminded of how blessed that we are,
Our family of love the very best gift by far.

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

Claire for President

Maybe she can run for the President of the United States one day?

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

 

 

 

Like It’s Last

“Play each game like it’s your last, and don’t forget to pray” I hollered to him as he was leaving for the Friday night lights. He just smiled at me big with an agreeing yes and hopped in the truck to go live life full as a young life should.

For five years we have been living this new motto of living each moment to the fullest. Last night was just another reminder of why.

Claire had a seizure while watching her big brother run fast and play hard. Life is like that. Hard times come from no where. Hard times can hit you at any time, any place and almost always when you least expect, even on the sidelines of a football game.

I hate these seizures! They can have a tendency to make me want to seize up in life. When Claire suffers through one, I suffer along with her. Any one who is witness to these horrific episodes also suffer with her. But then, there is Grace! I can only stay calm when I am breathing His Grace.

“And don’t forget to pray!”

Knowing the only way to live each moment full is by breathing Grace and praying for the peace that can only come when living full in God. Which means living full in the knowing that He is in control of this breathing life.

We are reminded life is fragile and passes so quickly. We have to play each game like it’s the last and yes it can be very hard, but the reward is God’s peace, joy and a heart full of love.

We breathe Grace, live love and just keep on playing and praying.

He holds our lives in his ever capable hands, even when I am holding her while we wait for her to wake up to shine that smile so bright. And wake up she did, all smiles, all better, all happy and all ready to say hello life with her reassuring thumbs up smile this morning I can say… Hello God in each play of this game…Hello Butter

epilepsy is an enemy

Epilepsy has no cure.

A heart crushing reminder as I helplessly watched Claire suffer another seizure last night. While I do all I can do to aid her during these cruel attacks, I still feel helpless. I gave her the emergency med under her tongue, I made sure her airway stayed clear, I monitored heart rate and breathing…all I can do, all while I prayed.  An hour and a half later she was her smiling self again, but my ache for her to be cured was tangible.
Normal days of happy come to a screeching halt because of this disease.Every fairy tale has an enemy. Seizures are Claire’s ugly monster she will battle her whole life. Our Rainbow Princess is courageous and strong enough to fight this battle. Along with being surrounded by love, faith and soldiers of God. We will be her aid, as God can work through us. He has a plan for her life. However, it is not to be free from seizures. So we will battle on, living with so much joy and love in hearts that there will be no room for an enemy. And though it seems my heart is heavy today, I am really standing strong against an enemy that I refuse to let rob us of our happy ending.In our Kingdom a rainbow follows every drop of rain,no matter the size of the storm we see His light shine through her life.

“I will fear no evil, for my God is with me and if my God is with me whom shall I fear?”  (Matt Redman~You Never Let Go)

 I would have loved for the plan to have been to say good-bye forever to seizures, instead we will say hello to strength, faith, courage, love…most of all

Hello God…

 

 

God Mist at USCG Graduation

Her eyes lit and smile shined as she wrapped open arms around him. Excitedly she whispers, “I misted you” and he glows with deep love for his sweet baby sister. My eyes “misted” as I lived this moment in full joy. It was one of those times in life that captures not only heart but soul. Knowing that these siblings may have never met this side of heaven.

This was not our first visit to Cape May. Five years earlier as we tried to process the grim facts of Claire’s diagnosis we landed close to that same stretch of ocean. My five month pregnant self needed to feel the calm of the sea, hoping Claire would also feel the peace. Looking back to all the swirling emotions,I never dreamed we would re-visit the ocean with Claire by our side.

 So, having her play in the sand and seeing her hair kissed by the breeze was a full circle moment. This time was not only a celebration of our son’s accomplishment it was also a revelation and testimony to the power of love and trusting a God who has planned our tomorrows. Being able to see the past of uncertainty come into the presence of a “misted” embrace can only be described as God. No words can do justice to a God moment, not only this one, but all of life as He orchestrates, past, present and future.

Tuesday will be Claire’s fifth year of living miracles. I remember her first days in the NICU as we gazed at her beauty,asking Bryan “do you think she will ever be able to smile, do you think she will ever know who we are?”  and God answered…

© 2012 hellobutter

Linking here today www.gettingdownwithjesus.com

Almost Amish Life for Me

We love Amish country. Love the food, the scenic country side, the simplicity of life. After every visit we come home refreshed with a renewed passion for living simple.
As technology grows, I am getting spoiled by the convenience of all it offers. Too spoiled! So, I’ve decided we are going to attempt a tech free life for a few weeks.
My kids need to join our family a little more and walk away from phones, ipads, ps3 and all the likes of. However, I have to practice what I preach. I will shut down all things involving the net. I will only check emails & such once a day in the evening. I will also be writing about it in that hour, but that is all. No surfing, no searching, no chatting, facebooking, twittering, or pinning!

I am choosing to focus these last few days as a family of six under one roof, on exactly that…Family!  I am hoping to become almost Amish for  just a little while. I’ll come back to the internet after I’ve been refreshed and renewed by the simplicity. 

 This is also part of letting go and letting God.~Always Ready to see Him in all things.  I know He will be present in all the fullness living simple has to offer.

So, today I am saying goodbye technology,

Hello God & Family Time… Hello Butter

 

 

Images Courtesy of Kaptured by Kelly

© 2012 hellobutter

Letting Go~Letting God

I remember a tiny hand so chubby with dimples where knuckles should be. How I loved rubbing my hand over those dimples, holding so softly, fingers laced gentle into mine. Holding onto memories of chubby, days of baby and mothering love abound. Traveling toward a new adventure of letting go.

 A firstborn child is a mother’s first love. Like the rising of a beautiful sun in the early morning hours, touching all the dark places of night. Filling the world full of brightness in places that have been asleep. A mother’s love is touched by the first born light. A love that awakened so many sleeping places of my young heart. And now that baby, child, man is leaving for his own adventure. He will touch new places of the world, leaving his light where it may have once been dark. And as much as I want to be selfish and grab hold tight of that once chubby dimple hand, I have to let go and let God.

He will be called a Guardian. The Guardian Ethos reads with words of protect, defend, save and shield. Semper Paratus~Always Ready.

 I can only let this child’s fingers slip from mine, if I know God is, was and always will be steadfast in the holding, embracing of his once chubby, dimple filled hand. The tears will well and the heart will sting, but I will let go and let God. Let go and let God guide Him in the adventure of life in the Coast Guard. How he has been made ready for this. My oldest has always been a big brother, full of protecting and responsibility. God has made him for this guardian life.

I will soon say the hardest goodbye a mother’s heart will bear. Goodbye to dimpled hands and shining firstborn light. My heart aching but steadfast with faith.  I may not say good bye, my heart can’t take it. Instead I will say…Hello God~always ready Guardian of our lives, embrace his dimpled hand along with my heart. Help me be always ready to let go and let God.

Always Ready saying Hello God…Hello Butter