Best of Living

June 12, 2013

girls relay

The lump in my throat swelled as we rushed into the front gates of that stadium. Fans all yelling for teams running around the track, excitement thick in the air.
I see the blue & gold colors flash by as our girls team place in this race of whole state. Believing is to Be Living.

And more tears well in my eyes as we are witness to the first wheelchair race in history at a high school level. Claire cheers as they go by, my heart soars with hope knowing there is a chance she can compete one day.Believing is to Be Living.

A weekend in Columbus full of the accomplishment of many young athletes and coaches too as our own coach is honored for years of dedication to this sport of track & field.Believing is to Be Living.

 
Then to see medals placed around the necks of a poised team of four boys also dressed in blue and gold. United they are. Proud parents we are. Hard work and determination to achieve their own piece of history. A race to a set goal, just shy of reaching the record they stand on the podium to shine smiles that melt hearts. Moments to cherish, smiles to remember, races to show that Believing is to Be Living.

track

And today marks six years of racing with determination,faith and goals that were said to be impossible. But a special little soul has never quit running,never quit believing…She is six years old today.

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Claire6

Happy Birthday Claire! Thank you for inspiring me to believe because the best comes when you decide to not just believe but to be living.  Be Living full in the moments God has blessed us with. Believing is to Be Living.

beliving

Quote from Ann Voskamp @ www.aholyexperience.com

Claire’s Birthday Pictures by Kaptured by Kelly

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Field of Laughter

May 28, 2013

These four of mine, they trudge out to the middle of that hay field to satisfy a mother’s need for remembering moments. My sister looking through the viewfinder seeing us all laugh at posing just so, and smiling on cue.

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She is Kaptured by Kelly and capture she does. Capturing moments this mother’s heart needs. Not just for the picture to be framed, but for the laughter of the day to sink deep into my soul, so that on days we are apart I can remember those special smiles we had out there in that field.

Small moments made big in my search for simple joy. Simple pure joy that fills a heart that overflows love. A kind of love that spills out when there are tough days. On days that we are separated by space or days when there is an empty house quiet and still.

On those days I will remember laughter in the field and remember God.

kaptured

kids1

How much He has blessed our lives with these four. He placed them together in this world for a reason. He knows their hearts and knew they were a perfect fit to be siblings. I knew this long ago. Only did not realize how much they would rise to the occasion of being special.

On that day the youngest quit breathing they were there. There to see her lying on the ground with life fading. They were there to wait at the end of the lane to show the ambulance the way back to her. And they knew how much I needed them to be strongly calm, so that when I flew in the helicopter with her I knew they would be ok.

michael&claire

Hard days like that help us grow even more into the family God wants us to be. He carefully chose each of us to be together through hard, sad, happy, laughing days.

So, when the girls jumped onto the brother’s back, I smiled knowing that is exactly how God would have it. Siblings sharing the load of a world together with love, with God…four siblings growing in a field of laughter.

kapturedbykelly

 

Copyright © 2011-2013 Hello Butter images & content

 

Days Like This

March 18, 2013

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…

clairesharddaysharddays

Hello God…Hello Butter

Whisper a Prayer

December 25, 2012

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.

christmaskiss

Claire for President

November 6, 2012

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

Like It’s Last

August 25, 2012

“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

June 24, 2012

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

 

 

Finding Joy

February 28, 2012

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!

Megan, born with Spina Bifida, sails across the ice to get the puck!(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

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!

Awareness & God

November 1, 2011

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!

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