Letting Go~Letting God

March 15, 2012

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

March 6, 2012

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

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!

SUPERGIRL~CLAIRE

January 29, 2012

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

 

 

“Unspeakable,unending,thanks be to God…”

God,Butter & the Moon

January 11, 2012

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…nvgand 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

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!

Our life is truly surrounded by butter these days. But having this diet change in my life makes me think of butter differently. I think of my life being made richer by the changes a high fat diet has brought. I look at a stick of butter and can’t help but think, ” I am rich” and I begin to count the ways I am rich.

One of the ways I am made rich is by being richly blessed by the abundance of love in this life. Knowing it is a stepping stone to eternity, the love found here and now is but a small foretaste of what our awesome Creator allows us to experience before we can all be called into His kingdom to love in ways beyond our mind can fathom.
God has blessed me beyond abundance with love that surrounds my heart and grows my soul.
Family love is one that makes my heart strong, but another love is just as great is that of a friend. While I have many to speak of today, I am talking of a southern beauty that walks and talks a love beyond what the eyes see straight to a heart that feels. She walks the Proverbs 31 woman’s life.

Wendy & Claire love

Wendy is love, Wendy helps my soul grow by just being in her presence and the strength of her heart pulls at mine. She is made strong by faith that she grows with living as a daughter of the Almighty King. The result of her faith is His love that shines as  she walks through this life.

my eyes are so puffy tired, they look closed

I am honored God introduced this amazing friend into my life. We were reminded this weekend at the She Speaks conference of seeing life’s gifts, thank you Ann Voskamp for the gift of your mesmerizing voice and beautiful heart.

http://onethousandgifts.com/

On my One Thousand Gifts list…my sweet friend,sister in Christ,Wendy Pope

Leaving the Livingroom

July 23, 2011

Getting primped for vacation

Hello Butter has hit the road.

We are in North Carolina for a women’s conference called She Speaks. If you’ ve followed me long, you will know how much I love this weekend. I love the people I meet, but better yet, I love how God shows up at this event.

Claire has been doing so well, that she was able to travel with me again this year. She has been talking about it for weeks because she gets to hang out with her Wendy Pope! She loves Wendy! She was  so excited and kept asking “am I going to hold her and hug her?” I think she has said her name 1,000 times a day for weeks. So, she has got to have some Wendy time and I believe she could have Wendy hold her all day for many days! Claire has truly sparkled as she wheels around in her chair saying “hello” to everyone,she enjoys being social!

 
We packed a cooler with her ketogenic food and so far the diet hasn’t been too much of a hassle. I am finding we adapt pretty well, even if you have sticks of butter in your suitcase.
The diet is definitely easier to maintain while in the comforts of home and the routine of life in our livingroom, but now its nice to know we can also spread our wings and take Butter on the road!

 So, today we are saying goodbye to the comfy couch & tv…. & Hello Butter

Picking Berries

July 13, 2011


I soaked in the quiet of this beautiful summer day and pondered the berries I saw growing on the hillside. It was a gentle reminder to me to enjoy simple. 

The simple pleasure of the warm summer breeze,the simple whispering of the trees,the simple melody of the birds joyful song and the simple sweetness of those berries.

 
In the midst of my frenzy to attempt a family vacation for the six of us,I stopped to appreciate the simple. It doesn’t matter where we travel or how we get there as long as I remember to keep seeing all the simple joys of the life I am surrounded by. All the blessings and beauty of creation. A world of simple gifts that God has placed before me.See,hear,taste and smell each breath of a moment created by my loving Father.Simple.

I am off to take my sweet Claire to harvest those sweet berries and enjoy  sweet simple and pause to say…

goodbye chaos…hello butter

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