Tuesday, October 28, 2014

'Tis the Season for FOOD... the four letter word!

I use to love this time of year and all the fun that comes with it but this year is a little different.

As much as I want to get into the spirit I just can't help but feel a little less than festive. 

Have you ever stopped to think about how much food plays a role in our celebrations? I never gave it much thought aside from the occasional post dinner jokes about excessive calories or overindulgence. 

Although, this little four letter word, isn't the real reason for our celebrations, it is pretty hard to ignore when your child can't eat anything! 

And let's not forget it isn't just the lack of eating that's the problem, it's the missing out on all of the memory making fun that involves FOOD!

Honestly, it isn't even the fact that while everyone else indulges on mouth watering treats while my little guy slurps up shaved ice, that causes the biggest sting to my 'mother's heart'. 

It's the pumpkin carving and patches, trick-or-treating for candy, turkey and pie eating, Christmas cookie making... FUN... that I will miss the most.

I guess the hardest part is letting go of so many holiday traditions that we have had since our first child was born. 

I know that our little superhero will not miss these things, in fact he doesn't know any other way... it's me. I'm The One!
It will be me that misses getting to see his squeamish smile when he touches slimy pumpkin guts for the first time.
I'm the one that has to let go of not getting to watch a messy face toddler plunge into the thanksgiving fixings.
I'ts me that longs for the perfect image of all of my children gathered around a table with endless smiles as they cut out and decorate their Christmas cookies... while sneaking licks of icing when they think no one is looking!
I'm the one that is missing out on him doing the same family traditions that have become synonymous with the holidays.

Now, trust me I realize that I am blessed to even have the opportunity to share these holidays with my little guy, and I will not let anything keep me from soaking up every moment... but I would be lying if I said, "It doesn't hurt a bit."

Please don't get me wrong, we won't let this keep us from making wonderful memories, we are just going to have to get creative and find new ways to make jolly holiday fun. Very soon I will begin to relish in the joys that come from our new traditions... I promise!

But for now, Thank you...

... for not judging this special needs mama for letting her feelings of sadness surface for just a moment. 

... for allowing me to mourn the loss of the "normal" care free way of life that we use to enjoy. 

.... for supporting us in more ways than we could have ever imagined.

... for going above and beyond to make our little superhero feel included.

I feel better already!!

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Monday, October 13, 2014

Our Superhero: Cohen's Story (Super Cohen's Crusade for FPIES)

I realize that perhaps some of you have become pretty numb to my relentless requests to pass along information about my son's condition.

Please before you scroll past another one of my posts understand why I do it...

This media is all I have at the moment to feel as though I am doing anything productive for my child and his illness. I am left without resources to help my son and it is a helpless feeling as a parent, one that I hope none of my Facebook friends ever find themselves experiencing. So I am doing the only thing I can... I am advocating for a change so that my son and others can live fuller and less painful lives.

I pray you never have to hold a limp and lifeless child.
I pray you never have to hear a doctor say, "we just don't know what to do."
I pray that you are never told that your child cannot eat.
I pray you never have to experience the pain that comes watching your child suffer.
I pray that you will help us spread awareness and bring light to this illness.

Global FPIES Day is about sharing our stories to help others that might be caught in the painful cycle of misdiagnosis and to raise awareness that will bring about critically needed research.
My child cannot eat food and that affects every aspect of our family's life. It is our everyday battle...one that we hope you will chose to help us fight.
I ask you... because I need you! There are still so many doctors that have never heard of FPIES. Please share our story, Cohen and his friends need your help.

Please visit Cohen's Facebook Page, LIKE it and share it to help spread awareness.

Happy Global FPIES Day!

How Our Journey Began     Here's the story of one little Superhero...
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Saturday, October 11, 2014

By the Light of the.... Little Pump

I have recently become aware of new talent that I have unknowingly developed. Isn't it funny how you can move through your day and not even realize that you have picked up odd habits.

I don't mind to admit that our little superhero has challenged everything I know... or thought I knew about child rearing. Nothing with Cohen has seemed to follow suit with his four older siblings.  But I have had to learn how to grow and stretch my understanding of parenting in order to accommodate his unique needs. Along the way I have not only learned many things about myself but I have apparently developed new gifts as well.

So what is this new talent you ask...

Well, awhile back all of our bedroom clocks decided to retire themselves and for one reason or another they were never replaced. Now, it has come to my attention that I have found another more unconventional way to tell the hour throughout our long nights.

A short while ago I realized that I have been periodically waking and looking at the level of Cohen's formula to determine the time. Because Cohen has the same rate every night, I can tell how much time we have left for sleep by looking at how much formula he has left in his bag. It's a strange gift I know and one I had been developing for longer than I realized.

Who knew that when we welcomed that glowing little noise maker into our bedroom that I would find another extraordinary use for it (I mean besides its, sustaining the life of my child one).

I guess you could say that this is my little way of turning lemons into lemonade!

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Wednesday, October 1, 2014

Reese-Pie...Reese-Pie, Oh my Reese-Pie

Happy 4th Birthday to my spunky little funny bug. We are so blessed to have you in this crazy little gang or ours. You are such an amazing little life and you bring happiness to each and everyday.
 I love that you can act like a teenager one minute and then a toddler the next.
I love that you never shy away from giving your opinion, or demonstrating your uncharacteristic strength for someone so small.

I love that no matter what you find when you look out the window each day you say, "Mama, it's such a beautiful day." 
I love that you remind me that life is short and childhood is even shorter.

I love that you think it is hilarious to hide for minutes behind walls just to jump out and scare us.

I love that you climb in bed with me really early every morning just to snuggle.
 I love that you still put your shoes on the wrong feet just because you, "like it better that way."

  I love that you won't go to sleep at night until I give you your hugamugas (nose kisses... see Daniel Tiger for more details).

I love that you really do want to be a princess when you grow up, except for the day you thought perhaps you would like to be a dentist.

I love that you do the Reese-Pie Dance, when we sing, "Reese-Pie, Reese-Pie....Oh, my Reese-Pie."

I love the way you sing all day long, reminding me that nothing should keep us 
from making a joyful noise. 

 Oh, Reesie-Pie how we love you soooo!
Happy Birthday Sweet Little Girl!

Psalm 100:1-2
Make a joyful noise unto the Lord, all ye lands.  Serve the Lord with gladness: come before his presence with singing.

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