March 6, 2012
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!
February 28, 2012
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.
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
January 29, 2012
October 11, 2011
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!
September 5, 2011
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!
June 25, 2011
Days of butter are going well especially since Claire is doing better!
We are on week six already and only one big seizure. She had three seizures the week before we started the diet. So that is quite an improvement. There have been a few days that I am suspicious of her having seizures we don’t see. The only way to know if her brain is having those “unseen” seizures is an EEG. We will have another one in October after three months of the diet.
Until then we are enjoying these butter days, oh I mean better days.
While she enjoyed this new treat, I don’t think it replaces her good old cone from pre- diet days. Notice the grit in this concoction? Well to get the proper ration I had to add fats. And you guessed it…chunks of butter and macadamia nuts. Like I said not her usual ice cream treat. I will have to fine tune the ratio for next time.
One more diet treat we have really fallen in love with is the avocado.
It is a ketogenic dream carb. I love it not only because it tastes so good, but also because it is the perfect fat to carb ratio. This means I don’t need to add one single drop of cream or butter to this wonderful fruit, or is it a vegetable?
I don’t know for sure what class of food it falls into all that I know is that it is easy. I cut one up and weigh it so that I know how many calories it is and put it on a plate! Like I said its a dream food for those on the ketogenic diet.
Claire calls it her “cado” (rhymes with motto) She likes to use the word my now when she is talking about her food. Where’ s my “cado”, where’s my chicken and sauce are just a few examples of “her food”.
And can I just say I am becoming some what of a master chef in the ketogenic kitchen? I have never bought so much healthy food in one grocery store trip. Today I just knew people were looking into my cart and thinking “wow, what a healthy family that must be?” I even had salmon in my shopping cart. Along with lettuce,cucumbers, cilantro, tomatoes, onions,green peppers, bananas, and of course avocados!
We didn’t need butter today. We have a good supply always on hand since it is after all the staple of her diet.
Goodbye shopping carts full of junk food…Hello Butter!