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

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,Butter & the Moon

Adding my story to the Ann Voskamp series~The Practice of New Habits

I have always been an admirer of the night sky. I think it goes along with the dreamer in me. Last night as I wondered at the majestic beauty of the full moon, I was reminded of how just a short time ago, I feared that same moon.

It’s a fact (in my head) of the disturbances a lunar glow can bring to life. Every time there was a busy night in the nursery, I blamed the moon. Every time there was a crazy night full of weird happenings during a nightshift at the hospital, I would blame the moon. Even when my children start to have an abundance of suspicious energy, I find myself saying “is there a full moon?”

As much as I enjoy the night sky, there became a growing dread each month as the full moon approached. The reason for this dread was due to the fact that Claire’s worst seizures happened during the brightest lunar phase. More proof the diet is helping Claire to stay seizure free is my viewing the biggest brightest moon last night and rocking my girl to sleep in the comforts of our living room, far from the emergencies Claire’s seizures would bring.

It was during a full moon the last time I was strapped into a helicopter seat. Claire was fighting for her life behind me and fear was seeping into my entire being. As this fear rose, so did the helicopter. Rising into the icy cold winter night I felt a chill like no other. I thought this flying trip to another children’s hospital combined with the eerie cold dark, could not be a good sign.

My usual optimistic self was battling the dark in those few minutes of departing from the helicopter landing pad. That same landing pad painted with a giant white cross had brought comfort in the past. Seeing that cross knowing it was a landing zone to safety, to people who could save Claire from the life stealing seizure she had just suffered. But on that night, we were leaving that cross and my fears were mounting.

Our past emergency flights had been in the bright of day. This was the first time I experienced lifting off under the cover of darkness. The dark seemed to be taking over, until I cried the most comforting prayer I know. I closed my eyes with the uttering of this one name: Jesus. I felt the lurch of the aircraft in my stomach as we jolted up into the dark. Tears started to fall down my cheek and my heart pounded into a fearful fit.

The previous trips had ended with me seeing that cross on the landing pad as a sign from God. However, in the darkness of this night, He felt so far away. I thought, “Dear God, where are you in all this darkness?” Just when I thought where in the world could I find light in this moment, I opened my eyes to the night sky we were ascending into…and there was the fullest of full, lighting the darkest of night.

 The lurch in my stomach from take off was nothing compared to the leap my heart experienced when I saw that beautiful moon. Knowing God created that beauty in the night, lighting my life in those fearful moments, was my sign. God was there, He is always there. Even on a cold dark December night. I only needed to look up.

I usually end my post with saying goodbye to something. Today, I don’t want to say goodbye, only Hello. Hello to God today and everyday. Hello to all the riches only He can give. Riches of a life blessed by saying Hello God and finding Him in the light of the moon on one scary night.

 A diet full of butter is thought to be of rich flavor , but a diet of saying Hello to God will provide more riches than one can imagine.

So, in every moment of life I choose to practice a new habit and say:

Hello God…Hello Butter

Falling for fall

Fall love

Thank God for fall! Each year I fall deeper in love with this season. It’s our favorite time of year &
We’ve been pretty busy saying a lot of hello to not only butter but also pecans, cheese, physical therapy, home school & football games. Claire has been doing so well that we have a busy life back.
She’s been able to go back to physical therapy once a week and she is getting stronger & stronger at standing. And while she is doing so well I still don’t feel she can handle preschool at this time. Instead, we have a teacher come to the house once a week. Plus, she has been enjoying watching her big brother play under the Friday night lights so I feel this satisfies her social life. And I do mean social. This is one area of her life that I have no worries. She loves to see everyone at the football games and works the crowd like no other four year old I’ve seen. She is full of smiles and personality and is the best cheerleader for her Michael. Go Michael Go! We are even able to pack her pecans, cheese and butter to go for the football game. Not your typical tailgate food, but she loves it!
Now since summer has ended I feel it is safe to announce the official news that the summer of 2011 has seizure free! This is the first summer since 2008 that Claire has not required to be life flighted. With all my heart I praise God for the miracles on our life!
So, although I am a few weeks late in saying this…goodbye Summer…hellobutter!

Say No To Normal

Did you know that it was over labor day week end, that Claire had her first seizure? And 3 years later we are praising this season of seizure freedom!

 Thank you ketogenic diet.

We will know for sure just how seizure free she is after an EEG in Pittsburgh later this month. But she is showing no signs of “big seizures”,amazing! Her EEG will tell us if she is still having the silent ones,which I think she may still be having a few of those. There are times when she stares too long. But yet there are times she is staring and announces: ” I am staring”… its hard to say what is really going on inside that head of hers,lol.

 With this season of seizure freedom I find myself saying: ” I feel like we are getting back to normal” until one day I looked up the meaning of normal.

Have you ever looked up the definition of normal? It’s meaning doesn’t really describe our life. It used to be something I thought we should eventually get back to.

I’ve decided I don’t want normal back! I want to live outside of the definition. I have been made better,stronger,more faithful by the “not normal” way of life we’ve been living due to Claire’s seizures.

Sometimes in all the chaos of life, we seem to strive to get back to normal(usual, routine,ordinary) but why not strive to keep living extraordinary, unusual, special, exceptional lives? I think our hearts should embrace the changes we fight so hard to avoid. Take normal and redefine it in life. As a matter of fact quit trying to find it again…..

I am saying goodbye to normal and…hello butter!