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…

 

 

Advertisement

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

 

 

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!

Finding Joy

Butter Joy @ our fingertips!

It’s no secret that I think the key to a happy life is living full  in each moment. We have lived full moments in all situations since Claire’s birth, good, bad, scary, sad. I absorb each feeling, wrap my heart around these fleeting spaces of time  letting them soak into my being. The bad, sad, and scary force me to call on the name of my Savior. I let Him wash over me to get me through those dark times. 

But what about when all is well?

When I am having happy times do I still call on my Christ in times of plenty? Yes, I do! We are having a seizure free season of life now (thank you Ketogenic diet) and I want to continue to live it full. One new adventure to help us experience all the Happy life has to offer, is try something new.

Sled Hockey!

(This is what I think Claire will look like,this is Megan. See the link for more)

http://www.livingwellwithadisability.org/2012/01/sled-hockey-put-your-disability-on-ice/

I find that when life is traveling along at the super  high rate of speed it tends to go, I can easily get into the rut of everyday normal. It’s important to make small efforts to include more joy in life. The reward is a better quality of life and a better heart for living happy. We have first hand knowledge of how quickly life can go from good to bad. Epilepsy can do that to a life.

As I talk of finding  joy to make our days better, a neighboring northeast Ohio community,much like my own, suffers the most horrific tragedy of a fatal school shooting…and their joy is being sucked right out of life. It  makes this topic ever more important. Finding the joy in this moment because it may quickly be lost. Hold on tight to living full joy, break out of winter blues and everyday ruts. Keep God first, pray hard, and maybe we will find you on an ice rink, finding a new moment of happy, dressed in helmet, pads and on a sled chasing smiles around with a hockey stick.

As we begin a small new adventure of finding all the joy God has for us we say:

Goodbye everyday ruts…Hello Butter

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

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

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!

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!