Our Anna was diagnosed in 2001 at the age of 12 with scoliosis. She had a last minute sports physical because her coach called and said he was taking a bunch of the girls to a nearby clinic that could get them all done that afternoon. That doctor didn’t clear her because he said she had exercise-induced asthma and scoliosis. Still not sure how we’d missed that, but we went back to her pediatrician and got the asthma piece addressed, and he referred us out to ortho for a consult for scoliosis. Her curve was moderate, 19 degrees if I remember correctly, but the doctor suggested bracing her until she’d finished growing. A lot of docs wouldn’t brace a 19-degree curve, but ours did and our girl wore that brace like a bomb through MIDDLE SCHOOL. It’s the only time we were thankful for the school dress code which required collared shirts. I knew then she had true grit and a strength beyond mine that clearly came from her dad. Ask him sometime about the silver caps he wore on his front four teeth in middle school.
Today, anybody diagnosed with scoliosis would automatically have an MRI scan, but in 2001 that was not the case. So that was our first missed opportunity. Had Anna had an MRI then, we would have found the Chiari and been able to take care of it before it had a chance to do any harm. Five years later, at 17, Anna was scheduled for sinus surgery and just wasn’t feeling right. I think she had a sense that something was going on and didn’t know what it was, just knew it was something. I called my internal medicine doctor, who happens to be a close family friend, and asked him to see her. He agreed and the pieces of the puzzle began to fall into place. Brain MRI’s showed a Chiari I Malformation. I remember getting the call from her doctor while standing in a flower store. We now refer to him as “the master diagnostician”, as we eventually discovered that many if not most Chiari patients go undiagnosed for years, as their symptoms can be so hard to pin down. They present as hypochondriacs, with unspecific complaints, and are often misdiagnosed for a very long time.
We ended up having surgery at what was then Scottish Rite Children’s Hospital in Atlanta, now Children’s Hospital of Atlanta. We found a great pediatric neurosurgeon there who came highly recommended. We loved him, loved his nurse, and felt really good about the choice. This was probably our second missed opportunity. Not that I can go back and make different choices. But I do regret that I didn’t look into our OTHER options. I felt overwhelmed by all the options. Also, the internet wasn’t the thing that it is now. It was not as simple to do research on medical options and doctors as it would be today. Our other girls were still in middle school and I was very involved with their activities and they didn’t drive yet. Thinking about researching specialists and making consult appointments all over the country felt overwhelming. We know now, but couldn’t possibly have known then, that if she had had the surgery she had this Tuesday ten years ago, it would have made an enormous difference in the progression of her symptoms and disease. I feel an enormous amount of regret about that.
Six months after that first surgery, the syrinx in her spinal cord had not shrunk as we had hoped. We went back to Atlanta and her neurosurgeon placed a thoracic shunt into her cord to drain the syrinx. The third opportunity missed here. Her neurosurgeon here, as well as the other docs we consulted, don’t like using THIS shunt since it has such a tendency to create scar tissue. Knowing now that scar tissue caused so much of Anna’s problems, I sure wish we’d not done that the first time in Atlanta or the second time this past February in Greenville. Hearing the doctor say Tuesday night post-op, “I wish I’d seen you ten years ago”, definitely caused this Mama’s heart to feel a huge sense of disappointment, regret, and all the other woulda, shoulda, wish I had, why didn’t we’s.
I let myself wallow around in those feelings for a day or so, but I just can’t stay there. I did the best I could at the time, with the information I had. We don’t have the ability to look into the future when we make critical decisions for our kids. I wrote last week about how different this time is from our first surgery ten years ago. Then, I was the decision maker. Anna was 17 and many years away from being a PharmD with more medical knowledge than I’ll ever have. Now, I’m a therapist. I deal with emotions, feelings, trauma, grief, and recovery on a daily basis. Which makes this all the more complicated for me.
I don’t want to dwell on all the things that could have been different if I had made different decisions ten years ago. When I think about my other girls, I have regrets about them too. My middle girl needed me a lot. I wish I’d just let myself love on her when she needed me and not worried about it. (She turned out to be amazing in spite of my parenting. She’s a landscape architect, artist, rock climber and is so precious.) Baby girl struggled tremendously in adolescence and needed some help to get things figured out. She too has thrived in spite of me and is getting married in 30 days. Because we don’t have enough going on, right? She is a worship leader and producer, loves her almost-husband unconditionally and is hands down the funniest person in our family. We just don’t get do-overs. We just get the next step. All we can hope for is to make the decision we need to make with the information we have at that moment in time. We do our due diligence as parents and just take the next step. Not looking behind us. Just looking forward with hope and expectation.
So we will move forward with Anna’s new doctor. He has offered her tremendous hope and we are hanging onto it. We feel confident that she is in the best hands. I like him a lot. He’s obviously so smart, but he’s able to explain things in a way that makes sense to me, which I think is a gift with smart people. Some of them can’t do that.
I woke up this morning with the words of Lamentations 3:22 in my head.
“Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.”
His mercies are new every morning. They were new ten years ago. They are new today. They will be new tomorrow. For that I am thankful.