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!
Tuesday, June 24, 2014
Monday, June 2, 2014
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.
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!
Embrace your struggles, let it strengthen you and look for the blessings in it, for there are many!
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