Charlee Challenge

March 15, 2015 will mark 1 year of our Charlee girl going to Heaven. So to honor her, Cashlee & I will be donating our hair...we have 7 months to let it grow, grow, grow!
What better way to honor our girl than to help someone else fighting a hard fight!
We challenge any and all of you to join us in this Charlee Challenge!

We Were Blessed

I've been thinking a lot about something that was said at the Batten Conference during the memorial service.
The pastor spoke about a lady he used to visit in a nursing home. During one of his first visits, she told him about her late husb...and. They had only been married a short time when he was in horrible accident leaving him severely disabled and even bed ridden. She was his care taker for many, many years. When he heard about her trial he said "I'm so sorry!" She said "don't be sorry! I was honored to care for him and learn all I did from him!"
As we heard this, we thought the very same thing about our Charlee girl! What an honor it was to be her care takers. As hard as it was to watch her lose ability after ability and have her become completely bed ridden, we would do it a thousand times more. We were proud to help her through all she endured. The things she taught our family, changed our lives for the better! All of a sudden the little petty things in life didn't seem to matter. We enjoyed the simple things in life. We became more compassionate and more loving.
She was truly an Angel. She was perfect! She was beautiful, strong and had an enormous spirit. Anyone that has ever seen her sweet face has been touched. So I tell you now, don't be sorry for what we went through because we were blessed to go through her trial with her! We were honored to take care of her and learn all we did from her! She taught us more in her short 6 years than most learn in a whole life time. We love you Charlee Bear!

5 Long Months

To my dearest Charlee, it's been 5 long months since I've held you in my arms, felt your heart beat for the last time and had your physical body in our home. We miss you more and more everyday. Our lives will never be the same.
Like the words in your chorus say:
You'll stay right here inside our hearts
Holding us in your sweet hands
We love you so and we know you know
How you've changed the world for us
Yes, you've changed the world for us
Charlee
We love and miss you baby girl.
We know where you are and only can imagine how happy you are. You have a much greater mission on the other side and I'm so proud to be your mom!

Every Teardrop

HE GATHERS EVERY TEARDROP

Regardless of the circumstance,
Regardless of the fear,
Regardless of the pain we bear,
Regardless of the tear,...

Our God is ever in control,
Performing as He should,
And He has promised in His word
To work things for our good

But as a loving Father would,
He sometimes lets us cry
To cleanse the hurt out of our heart,
To wash it from our eye.
Yet gently gathers He the tears
Within His hands to stay
Until He turns them into pearls
And gives them back someday.

Glenda Fulton Davis

The day we went to dress Charlee a lot of tears were shed by all in the room. I leaned over her and just let it out. Later that night I was looking at the pictures taken and noticed a tear fell perfectly on her face like she was crying with us! This is a treasure I will always hold near my heart. It made me think that maybe she would miss us just as much as we'd miss her!

The hurt fills my eyes and the tears come daily for my Charlee. I miss her so very much, but I know she is dancing in the sky and perfect in every way. I went to her grave today for the first time all by myself. I talked, I cried and I sang to my sweet girl. A very peaceful feeling was felt today.

 

Our Baby Girl

Charlee was everything we could've ever asked for. Her smile brightened our hearts and strengthen our faith. We miss and love you baby girl!

Our Angel Charlee-Video

We'd like to give a big thank you to our sister-in-law Jolene for making this amazing video. We were very blessed to have had the opportunity to have such a beautiful piece of music made for Charlee. At a hospital stay in February we met Amanda & Lyndi, the musical therapy girls at Primary Children's Medical Center. They came in after Charlee had only a few hours of sleep all night due to the pain she was having, she was screaming every few seconds. Charlee loved their sweet...

voices so much she calmed down and fell asleep for 28+ hours. Before they even wrote this amazing song, I did an off the wall thing. I asked them if they would sing the song they were about to write at her funeral. Little did I know that would be less than a month later.
As we sat with them, we reminisced about Charlee's passions... how she loved to sing and dance. How she has taught us so much and she changed our whole world. We gave them 2 pages of notes to use for the song. By the time they left I thought, I hope that was useful. How are they going to write a song from that?!? Well much to my surprise less than 24 hours later they came into Charlee's hospital room and performed her song. Tears flowed and our hearts were full. What an amazing talent they have. Their voices give me the chills. They recorded this song for us in their studio and Charlee was able to hear it almost everyday before she passed.
We can not thank these girls enough. We love it and hope you do too.
Please share with everyone you know. Too many children are suffering and dying from Batten Disease. Awareness is key to finding a cure.

 

Look for the Blessings

I saw this and it hits close to my heart. As much as caring for a child with a terminal disease was a STRUGGLE it made me see the strength I never knew I had. I'd do it over and over again for my girl. She taught us all so much. Her spirit ...radiated and she made our home a home of peace and love. I struggle each day now because I don't have my baby to care for, bath, feed and cuddle. She depended on us for everything! I miss that!
Embrace your struggles, let it strengthen you and look for the blessings in it, for there are many!