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

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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!

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!

Ketogenic Diet Pizza & Happiness

Oh for the love of pizza! As summer days are melting away we have been loving pizza. Yes, we have pizza Friday back in our lives. There is a product called keto-cal powder and I have found a recipe that uses this powder for crust, with a tiny bit of sauce & cheese and just like that…we have pizza back! Actually she has been eating pizza everyday, three times a day.

 I’ve been finding that she goes through favorite stages. First she loved the chicken, butter, ranch combo. Then it was avocado and now it is pizza, pizza, pizza! She does have to do a quick shot(spoonful)of butter with each pizza to get the proper ratio. Despite the butter load up, I am just thrilled that the diet has been keeping her seizure free and pizza is back on the menu.

Another current favorite is sugar- free gum. One stick a day keeps the grouchy away! She chews it until it disintegrates into nothingness. These are the treats of a ketogenic diet kid. We are so grateful for the little things that make life good!

Thanking God for each melting moment…
Goodbye days of no pizza…Hello Butter

Hope you enjoy pictures of Claire and her “own special pizza”….

Pizza baking in the kitchen...

Pizza at the picnic table...

Pizza in the living room...

Pizza everywhere!

A true Proverbs 31 Woman

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

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

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

In God We Trust

Holidays around our house make me nervous. It seems Claire usually doesn’t have the best days at holiday time. Mainly because these days are surrounded by activity and far from routine. She gets extra tired, extra hot and extra close to seizure activity. So, today is no different. We walk on eggshells and hover over Claire to spy the slightest change in her behavior.

But then I decide to trust.
Trust God and lean completely on Him. Independence day reminds me how dependent I am on God. I have a peace of mind knowing He is in control of our days. Even holidays. This helps me enjoy the celebration and see the joy in every moment life offers.

 
To live a full rich life I have to say,
Goodbye nervous holidays…Hello Butter