"In those last few moments, I held you tight and apologized that I could not save you. I sang to you and asked you to stay even though I knew that our parting was within minutes. I promised you that I would never forget you or stop loving you. I promised that I would never let others forget about you or about this awful disease that was robbing you of your ability to breathe. I told you that I would fight to see SPINAL MUSCULAR ATROPHY cured so that others would not have to live the same fate.
The world of SMA is devastating, heart-wrenching and exhausting. It robs families not just of their children but can also rob them of their hope and optimism. On any given day, I can feel none, one or all of these feelings. I still have moments where I want to hide under the covers and not get up. I want to pretend that SMA doesn't exist. But...there you are.
I see your face not just in my memories but all over our home. I hear your laugh in the baby sister that is helping to heal this family. I see your pain in the faces of so many other little warriors. I can still feel your little hand in mine and the way your head would lay in my arms, so different from your sisters'. My promise to you will never be forgotten. You will remain a part of our lives for as long as my heart continues to beat.
I have come to realize that I cannot keep my promise alone. Last year hundreds of people helped to take the first step. I am hopeful that once again this year a community will come together. They will come because they remember you. They will come to celebrate your second birthday and have fun. They will come because they too have suffered a loss or know someone that has. They will come because your story has touched their lives. They will come because they don't just believe in a cure, they believe in HOPE."
Join me on October 3rd for the second annual Georgia's Journey of Hope. Help me to keep my promise.
Love to you all,
Want to help? Letters are now available requesting prizes. Volunteers will be needed. Please contact me if you are interested. Ivory ribbons will be available in my mailbox starting next week until October 3rd.