Sometimes I almost forget Callie has SMA. Other times, I can think of nothing else. When she takes my earrings, puts them up to her own ears and grins, I wonder if she’ll reach 13–the age I’ve arbitrarily set as being old enough to get her ears pierced.
I’ve already accepted that she won’t walk. And I don’t mind that much. Some days, I feel certain that a treatment will be developed that can at least prolong her life. Other days, I think that’s a fantasy.
I look at Callie and can’t imagine life without her–the way she dances by nodding her head or by wiggling like a worm if she’s lying down; the way she shakes her head and says “No!” when she sees Peter coming to take her toys; her rendition of “Wheels on the Bus.”
Early in her diagnosis, I wondered to a friend why we couldn’t be a regular family–the people whose idea of a catastrophe is spilling coffee on their best suit. To which my friend replied, “But are they really the lucky ones?”
Not long after that, I was in the grocery store and saw a little girl about Callie’s age. She had some of Callie’s features and even had 3 older brothers like Callie does. I stood there, mesmerized. It was like visualizing a parallel universe in which everything that mattered in my life was fine. I watched her eat a cookie, turning this way and that.
I thought of Callie, who rides in a baby seat at the store because she can’t sit up in the cart for more than a few minutes. I noticed the girl’s sandals; I knew she walked. I thought of Callie, unable to move her legs. I watched the girl and her family walk out of the store. I thought of Callie. And thought it was possible that I was the lucky one.
Christy,
I don’t know if you know me, but I went through school with Lindsay. I was diagnosed at 9 with a auto-immune disease, Dermatomyositis. I’ve been fighting it for 17 years and still haven’t achieved remission. It affects the muscles and the skin. I’m very grateful that I’ve never lost my abilities completely, but I’m still greatly dependent on others for simply things. Sometimes the disease gets pretty out of control, and I wonder if I will be one who will eventually lose my life to it. (It is potentially fatal).
I too get frustrated when I have friends who think it is a catastrophe that they had a bad hair day, or have the sniffles. It gets frustrating trying to explain how hard it is to deal with constant pain and fatigue and weakness.
But I know God has used this to refine me; I know He’s used it to be a light to others. Sometimes I don’t understand it, but maybe I don’t have to. We are called to share in the suffering in Christ, and in it we become more Christlike. I sometimes wonder why God works that way, but I do believe He is still in the business of making beauty out of the ashes.
My prayers go out to you, Nathan, and Callie. By the way, she is a gorgeous little girl.
Love in Christ,
Stephanie
I am really enjoying Callie’s site! So glad to have a way to feel closer to her & to keep up with her progress.
I was reading another SMA blog awhile back & read something that stuck with me. I am paraphrasing, but it went something like this…
Most people are like dandelions, they can be tossed in the wind, take root anywhere, & grow up just fine.
Other people are more like orchids, they require special care, need the perfect surroundings to survive, & can only be raised by the most patient & devoted people… Maybe [Callie] is an orchid.
Much love!
Lindsay
Chris
I will be praying for you as you face the day to day challenges. Callie is so precious. PLEASE consider getting the ears pierced. She would be thrilled….thirteen is a long time to wait for her to get to enjoy earrings like yours! I will be praying for a miracle. she is precious! God bless!
Hi Christy,
I saw Callie’s website for the first time yesterday, and I will never be the same. You all have been in my prayers since her diagnosis, but now I want to tell everyone I know to come to this site and see God work in and through your family. Callie is beautiful and the boys are so, so cute! I, too, am believing for a miracle!!! I love you.
Cheryl
As the parent of a child with cystic fibrosis, I understand what it means to have a child with special needs. I used to ask myself “why”, too. I finally realized that there is no answer to that question, but I do know that God has blessed us with this daughter who has brought so much to our lives. I never give up hope that there will be a cure someday for her CF, and for your Callie’s SMA. Be strong, have faith, and know that God is there always.
Merry
(from Ware Shoals, SC)
Christy, I think God is working through Callie to bless you and Nathan, and so many other people. She is a very special child and I agree that you are the lucky ones!
Love,
Carol
(aka Mama, Mamoo)
Christy, my heart goes out to you and Nathan, but God knows who to trust these special children with and you are very special and a Godly mother. Keep your head high and remember that God loves you and little Callie. I am praying for a miracle for you.
Love you,
LInda
Yes, Christy (and Nathan)! You ARE the lucky ones!! God chose YOU to raise this precious child!! He could have chosen anyone to have been her parents, but he chose the 2 of you. May HE continue to be with you on this journey.
Linda Crouse