In Loving Memory of Charlotte 6/21/12 – 4/27/13
Today, a mama’s 1st birthday wish for her angel baby Charlotte is that we “will continue to follow and share her story.” Charlotte’s mama wants more than anything for us to “Spread the word about Spinal Muscular Atrophy so that other families will be spared the pain of missing their baby on her 1st birthday, and instead will have the gift of watching them blow out their candles.”
Sweet Charlotte was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 just three days before she turned six months old. Shortly after Charlotte’s diagnosis, her page popped up in my Facebook stream. I clicked “like,” not having any idea the tremendous blessing that simple “like” would bring. Through a willing heart, the power of photographs, and her gift for words, Charlotte’s mama taught me how to face the most grueling of life’s battles with faith, hope, and love. Although I’ve never met Charlotte’s family, their Facebook page allowed me to catch glimpses of their beautiful baby daughter’s last days on earth and passing to her heavenly home. Tears streamed down my face as mama and daddy sat with Charlotte in the hospital day after day, as mama danced with Charlotte to “Blessed Be The Name” in the living room, and when two big sisters pulled Charlotte on one of her last wagon rides beneath a bright sunshine.
Baby Charlotte passed away when she was just 10 months old, on April 27, 2013.
It’s hard to understand why God allows such suffering, but perhaps Charlotte’s mama understands best, as she wrote so eloquently in part of her Facebook post from last night, June 20, 2013:
“As the girls and I played with Mr. Potato Head the other day, picking out his various parts and choosing which eyes, nose, and mouth he needed, Grace said to me “I bet this is how God made us…choosing which parts he wanted us to have.” I fought back tears as I told her I agreed; that probably is how God made us. I imagined him picking out Charlotte’s parts…beautiful hazel eyes that were windows to her loving soul with long, curly eyelashes to frame them, a smile like her mommy’s that she would give freely and often, a dimple on her right cheek that would only be noticeable when she was uncharacteristically upset, long legs that her family can now picture her using to run and jump with the angels, and golden hair, almost auburn, that never lays flat and curls backwards at the top of her head…what an angel he made and sent to us; every part of her handpicked by him. Her stinky hands that I now long to smell, her gentle coo that I can close my eyes and hear, and even the SMA he handpicked for her to have. He chose her to carry the burden of this disease and while I many not understand it, I know it was planned. While my human capabilities prevent me from seeing the magnitude of his purpose, I know he has one. I am eased by the belief in a God that doesn’t make mistakes but instead makes miracles. I am forever thankful for my miracle and tomorrow I will celebrate the life of his wonderful, marvelous work, Charlotte.” (written by Charlotte’s mama)
Baby Charlotte, dance free, forever, in your heavenly home. Free of all hindrances, free of all pain, free of all earthly burdens. Dance for your daddy and your mama and your big sisters, too. Dance for the life you lived, dance for the life you live.
This is our birthday celebration, for you, sweet Charlotte. Happy Birthday, baby angel.
You will be beyond blessed by Charlotte’s Facebook page, please follow here.
Charlotte enjoys SMA-free days in heaven with other angel babies like Benjamin. Read Benjamin’s journey through SMA, shared in a guest post on this blog by his mama Nicole in September 2012 here.
For more information on Spinal Muscular Atrophy, visit the Families of Spinal Muscular Atrophy website here.
The God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 1 Peter 5:10
*The photograph of Charlotte used in this post is from her Facebook page. There, you will find countless beautiful photographs of Charlotte and her family.