|Chief of the Medical Staff|
Today I do not have a layout to share but this powerful painting. I have a copy of this painting on a postcard that my grandmother gave me back in 2008. I thought I had lost it, but two weeks ago I found it while I was sorting old photos. The irony of finding this now is that Caleb is scheduled for surgery this coming Monday, December 4th.
Caleb is having spinal fusion surgery to correct a severe scoliosis curve in his spine. When he was diagnosed with SMA back in 2009, the neurologist told Dave and I so many scary things that would happen, one of them being scoliosis. Children who battle neuromuscular diseases and live in wheelchairs are more likely to develop scoliosis, and once it hits a certain degree curve, surgery is the only option. I spent the past year getting second and third opinions, talking to specialists and fighting the insurance company to get the best possible surgeon and medical team to care for Caleb, which means we leave tomorrow for Rochester.
This is a major surgery with potentially life altering risks, but the only option is to move forward with the fusion. They will be inserting titanium rods and cadaver bones along Caleb's spine to fuse it and straighten it. At the end of the surgery he will be a few inches taller!
I would be lying if I said I wasn't nervous or scared. I wish more than anything I could trade places with Caleb and spare him this trial. But I can't. Caleb is amazing. After his numerous lumbar punctures for Spinraza this past summer, he feels he's up for the challenge because at least he'll be asleep for this procedure. He knows he'll be uncomfortable and there will be a 4-5 day hospital stay, but he's a real trooper. I'm so incredibly proud of him.
This experience is teaching me more about trust and hope. While I have done everything in my power as his mother to put the best team in place, ultimately the outcome rests in God's hands. He knows every detail of this surgery, every move the surgeon and team will make, and he loves Caleb more than all of his family put together! I've worried, cried, and stressed myself, but it doesn't help Caleb, and ultimately disappoints God. Of all the trials I've been through, Jesus has never let me down. He has provided, comforted, encouraged when I've needed it, but only when I have made the choice to focus on him and his promises. If I focus on the negative, that is what I see. When I focus on Christ he fills me with his perfect peace. I love Isaiah 26:3, "You will keep in perfect peace those whose minds are steadfast, because they trust in you." The peace only comes after I trust in Christ.
The Christmas decorations all around remind me of the hope I have in Christ. Although this season has some painful memories for my family, ultimately I remind myself that because of Christmas, the time when we celebrate God's gift of his son, we have hope. We do not grieve without hope, we do not go through trials without hope. Even when the bad things happen and life knocks me down, I have the hope of Heaven. One day, life here will end, and there will be no more pain or tears. What a glorious wonderful day that will be!
Until that day comes though, there will be trials and pain, BUT in the midst of life's storms there will be peace and hope.
I'm taking this picture to Rochester with me. During the hours Caleb is in surgery, I will keep this close to remind me who is in control. Jesus is going to be right there with Caleb. He created Caleb's spine and he can certainly straighten it! We covet your prayers for our little trooper this coming week. Jim, Zach and I will be going along with my parents and Dave's parents. Alexis and Alyssia will be coming out to visit after the surgery. I'm believing for great things this week - a peace that passes all understanding and only good reports! Thank you for your prayers, love and support!