A Child left behind...

My heart has been heavy with concern and worry that my world seems consumed with finding a cure and bring awarness to Mylee disabilities and disease that I am forgetting about another little beauty in my life.... Khloe bug!

She is growing into such a beautiful little girl... so smart and funny!! How have I become so lucky to be a mother to these two... How do I stretch myself between these two amazing little people. And still have time to be the best wife possible!!?? Not to mention time to research, fundraise and more over have fun.... It is challenging and I am constantly questioning myself...

I am inpired many other mommy's out there... I know that I am not alone especially walking next to our Jesus Lord & Savior!! I am strong because of those who have surrounded us in prayer and lift us in spirit daily!!

I promise my little one, I will always try to be there for you even when it seems my mind is pre-occupied. You make us proud and are so special to us. Your big sister loves you and you have taught her so much!! We love you Khoe!!!

xoxo

A Champion!

It is a beautiful Sunday morning, I sit here as my youngest naps and as I watch my oldest dance in her 'way' of course... she loves to play her demo music on the keyboard and dance away as if her feet and legs are weightless. I love to watch her flap her hands and arms to her own version of the rhythm of each song. And every so often a breeze will come rushing through our open windows and cause Mylee to shutter with excitement for the cool feeling on her face. Her expressions are priceless! I always wonder what her little thoughts are... like I said her expression tell it all... Despite the challenges she competes for each day - she will always be our champion!

We also fight each day for Mylee and continue our journey with her unknown metabolic diagnosis. It seems to be pointing towards a mitochondrial disease. We may never know for sure, but still encourage all of our friends and family to help us fight this battle! Help spread our words... learn about Mitochondrial disease... help us fight!

On Being a Champion

A Champion is a winner,
A hero...
Someone who never gives up
Even when the going gets rough.
A champion is a member of
A winning team...
Someone who overcomes challenges
Even when it requires creative solutions.
A champion is an optimist,
A hopeful spirit...
Someone who plays the game,
Even when the game is called life.
There can be a champion in each of us,
If we live as a winner,
If we live as a member of the team,
If we live with a hopeful spirit,
For Life.

By Mattie J.T. Stepanek

Mattie, lost his battle... but he never gave up! Mylee will NEVER GIVE UP... We will NEVER GIVE UP!!

Make an on-line slide show at www.OneTrueMedia.com

xoxo

Spring has arrived...

Wow, it has been several weeks since I last posted. I apologize, it is becoming quite a challenge to post on both Mylee's caringbridge and our family blog. I promise to work on getting a little better...

We have been a very busy family since the start of the new year... Mylee has had ups and downs with respiratory infections and seems to be back at her baseline at this time. She continues to struggle a little bit with clearing her throat with congestion. This might be something we need to talk with her pulmonologist at our next visit. She has made it inpatient twice since the first of the year. She ended up in the PICU in January at Phoenix Children's hospital with RSV and pneumonia. And was just released from Denver Children's hospital after a surgical procedure for her muscle biopsy. This time her little lungs didn't want to work properly after she was in recovery from her surgery. We are now battling her 3rd infection with some type of staph. Again, on antibiotics... and awaiting what the CDC will say!

Now on to the good news... Spring is here! We have had a beautiful weekend in Arizona. We took the girls to the Phoenix Zoo yesterday and had a fantastic time! Hoping to make a few more trips like this before it starts to get too hot. We are also looking forward to a long weekend in Mexico for Easter. Enjoy these recent pictures of the girls!

xoxo

Footprints

Two years ago this past week, Dave and I walked down the long white cold corridor of St. Joseph's hospital along with Mylee, her papa, and her Gigi to hand her over to the surgical team who performed her brain decompression. There are no words to express to you how we felt. Our little Mylee was such a happy and smilee little girl. I was so afraid she would wake up and be a different child. I was afraid her innocence would be stolen from her. I was afraid she wouldn't be her smilee self again. My fears were short lived...

Today, two years later we are still on this long road of unknowns and our journey continues. But, I am pleased to say that my child’s innocence were not stolen and she still shows us her beautiful smile almost daily! I cannot ask for anything more!!


Although we continue her fight today and we have new challenges that lay ahead for us, she continues to teach all of us the true meaning of life. Her "Never Give Up" attitude always seems to amaze us. She is such a fighter!!

I read this poem again this past week. It has always been dear to my heart and has even more of a special meaning to me that I would have never imagined. It has assured me to not be afraid of some of my recent fears. It allowed me to be true to my feelings. It reminded me that we are not on this journey alone. It confirmed that my faith can be renewed and it has!!

I hope you enjoy this poem as much as I have:

Footprints in the Sand

One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.
This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,
“You promised me Lord,
that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand.Why, when I needed you most, have you not been there for me?”
The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”





Mary Stevenson, 1936


xoxo