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

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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

Hello Butter Proud

I can hardly breathe through the proud of this moment…

There are a lot of moments through out life  that are hard on a mother’s heart. Sending a son off to boot camp ranks high on that list.
Such a flood of emotions swirled  around this day. I am so proud of the young man that stood shoulders back and right hand raised to swear an oath to his country.

Letting go has been easier to write than live. Since this post: https://hellobutter.wordpress.com/2012/03/15/letting-goletting-god/ I have been riding the waves of emotion. I am excited for my oldest to be embarking on a new adventure but, sorry that another season of life has quickly passed.

A bittersweet time for a mothers heart as we say goodbye to boys in search of manhood. I look at the beauty of seasons past  trying  to imagine the next moments of motherhood, finding new ways to be joyful in all things.

Wrapping my arms around him knowing when I see him again, all boy will have slipped away. Tears were proud, joyful and a tiny bit sad. Sad only because I love being a mom to babies and now my baby is all grown.

We have to say good bye to days of past and to boys of young so that we may live in the fullness of life that God has planned. See gifts of beauty in the eyes of a son no matter how grown,no matter the season.

Semper Paratus~Always ready. Always ready to see God, always ready to live full.

Hello God in all the seasons…Hello Butter

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

A Ketogenic Snowy Ice Cream Treat

There are few treats that the Ketogenic diet allows. But today we tried something new…

Snow ice cream!

I found a few general ideas for making snow ice cream online then adapted it for Claire.

I decided to replace the milk or cream commonly used in this recipe with the KetoCal formula. Then, I measured 25gm of the KetoCal formula (powder form, mixed with water) and the girls set out to gather some fresh fallen snow. I think the key to achieve the best taste is having good CLEAN snow!

 

There wasn’t much to it,

1. Pour the milk:

2. Add snow

3. Keep mixing until it turns to ice cream

4. Smiles sprinkled on top 🙂

Snow ice cream was the perfect answer for a “keto kid” that hasn’t had a treat like this in ages. I would say it was a success. I also made a small batch with whole milk and sugar for everyone else, however they are used to the good stuff and were not as impressed with this.

I have to say I was impressed with the texture. It turned out better than previous times I’ve tried to make “special” ice cream for Claire. Normally, Claire has to eat or drink every drop of every morsel on her plate since it is measured so accurately to achieve the proper diet ratio. The nice thing about using the formula is that it already has the proper ratio. So, if she doesn’t finish it all, it’s ok, since it’s calculated correctly. It just means fewer calories than figured. Too confusing? Let’s just say this is an easy treat for me to prepare and let her go.

We had lots of fresh snow today, but it was too windy & cold to play in,so this was a good way to have fun without getting Claire too cold.

It is possible on a butter diet to say hello Snowy Treats while we also say…Hello Butter

PS~I apologize for the poor quality of pictures, I was using my cell phone. When I grow up I would love to have a beautiful photography blog,it’s just not today!

SUPERGIRL~CLAIRE

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

 

 

“Unspeakable,unending,thanks be to God…”