Sweet Daniel

In many ways, it seems like January 11th was yesterday, but in many other miraculous ways, we've seen Daniel flourish and grow and benefit from his heart surgery. But we shouldn't get too comfortable, because life with Daniel has helped us shape a new normal. One I wouldn't change, exchange, or trade for the world. That being said, when a baby is being formed inside the womb, during that miraculous stage of life, the heart and spine form at the same time. So it is not uncommon that if one has an abnormality, the other can too.

We knew when Daniel was born that there may be a problem with his spine, but it was a "wait and see" scenario. Not what I wanted to hear at the birth of one of my children, especially when he was about to have open heart surgery at 4 days old. I've said it before, but I like to plan, to know...some would say control, but I just don't like to feel like I have no control. But, with Daniel's conditions, I often have little to no control. As D grew, it became more apparent that there was a curve in his spine, but the reason remained uncertain. After many tests, and most importantly, after the more pertinent heart surgery was behind us, he was diagnosed with a tethered spinal cord. The spinal cord normally hangs loose in the canal, free to move up and down with growth and bending and stretching; a tethered cord is held taut at the end, or anchored down. The solution is to cut that cord loose, or as the surgeon told me, "We go in and snip it."

We recieved a diagnosis a few weeks ago, and surgery was scheduled quickly, for tomorrow morning. Unlike his heart surgery, we haven't had as much time to mentally prepare, which is both good and bad. I liked that it wasn't a shadow, lurking behind every thought for months. But I also didn't have time to adjust or get used to it and today I've been rather weepy and sad. I know it could be much worse and our blessings are too many to count. Still, if you have a moment tonight or tomorrow to send up a prayer for strength for our family, understanding for Joseph & Nolan, peace for Brian and I and a successful surgery for Daniel, we would appreciate it. I'll admit it, I'm scared that our good fortune is just going to run out one day. I need to feel God's presence and I need to focus on His love for me and especially for my sweet boys. Thanks for listening, supporting and praying.

"The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17