As a kid, I would say I was an optimist, just like my mother; always seeing the brighter side. Now, with a child, I find pessimism and optimism are two sides of the same coin.
You look at your child and want the best for them. Your love for them is over powering and you want everything to be OK. However, fear can make you pessimistic. You love them so much that you fear what could be. It’s a constant inner battle for me between desperately wanting Charlotte to be strong and healthy, and all the while fearing that her shunt will malfunction or that her kidneys are suffering the consequences of SB. It's my Jeckel and Hyde.
After Easter weekend, I stayed at my parents' house, so I could go straight to Children’s Hospital in Birmingham with my mom the following Wednesday.
We attend clinic at Children's Hospital every six months, and their purpose is to be proactive in checking and monitoring the health of children with SB. I didn’t realize how much the visit was getting to me. I was having a wonderful time spending afternoons hanging out with my parents and laughing with my family. Yet, I started having nightmares about doctors telling children (not Charlotte) that their shunt was malfunctioning. I guess subconsciously I was worrying more than I knew. But, Charlotte seemed to be doing great, and the optimist in me said she was going to ace all her tests. The only thing that I feared was possible problem with the shunt.
The Diagnosis:
Tuesday, we headed to B’ham and spent the night with my Grandparents. Wednesday was Clinic day. First, Charlotte had x-rays of her spine and hip area, and then it was on to talk to Dr. Khoury, our orthopedist. Before we saw him, we met with one of the physical therapists who went over some activities that I could be doing to help Charlotte. A very important activity is "tummy time". This strengthens her lower back area so that she can accomplish things like sitting up (at 8 months she cannot sit up by herself). She also told me that stretching out her legs was important. Tummy time is our biggest hurtle, because she HATES it and unless I am holding her down, will immediately roll over. However, we are working on it…sometimes screaming all the way.
First, Dr. Khoury told me how well she looked and seemed to be doing. He was happy that, when laid across one’s lap on her stomach, her legs where no longer floppy. She was using lower back muscles. Then came the bad news. The x-ray indicated that Charlotte’s right hip was not fully in socket and would eventually need surgery. This happens with children with SB because they do not have the muscle that helps form and hold their hip socket in place. He told us that for now he wanted her in a brace at night. As far as when the surgery will take place, it is still unknown. For the next six months she will be in the brace. They like to wait to perform the surgery as long as possible so it does not impede development. From what I have read, they scrape away hip bone to make a better socket, and it is a very painful process.
Next, we met with our Neurosurgeon Dr. Wellons, who said she seemed to be doing very well. Then it was our rehab doctor. He once again told me not to get discouraged with typical milestones and that Charlotte would do things at her own pace. He also asked me if I had noticed one of her eyes wondering. My mom had also noticed this, and he told me to make an appointment with an opthomologist.
We were done, and my plan was to meet up with Ben to head back to Scottsboro. However, those terrible storms changed our plans and we spent the night with my Grandparents.
On Thursday of the following week, we headed back to Birmingham to see our Urologist and have another hearing screening. Charlotte's tests all came back excellent, and she aced her hearing test. Actually, she did better than most babies her age, but it was still a tough day. We asked Dr. Kitchens, our urologist, about the test. He answered our questions and informed us that over 80 percent of children with SB have to eventually have In and Out Catheterization, either to protect the kidneys or to solve the problem of incontinence. I thought that since Charlotte didn’t need catheterization currently, we were home free. I was wrong. In all likelihood, I will have to learn this process, and so will she.
The Result:
There is much to be grateful for and I’m aware of that, but it still hurts. I didn’t know there was a possibility of surgeries beside shunt issues. I thought we were over the catheterization. It takes me a moment to process, and I’m still processing the information from our most recent visits. The possibility of a very painful surgery breaks my heart. That one day Charlotte will be 16 and probably have to do In and Out Caths breaks my heart. Do we as mothers just always have a broken heart?
And the hardest part is the guilt. I am plagued by, and sometimes utterly overwhelmed, by guilt. Maybe all mothers of children with medical issues feel responsible, but it seems that with Spina Bifida, it is so easy to blame yourself. I was taking folic acid before Charlotte was conceived, but I am plagued by the question of: if I had taken more, if I had eaten more green leafy vegetables? What if? I try to be diligent in Charlotte’s care, but after the news of surgery, my heart sunk as I wondered: what if I had done more belly time, what if I had spent every waking moment of the day focused on Charlotte’s rehabilitation? Would it have changed anything? What if? The hardest thing of all is the knowledge of why trials are placed in our lives. Trials are to shape us and make us like Christ. Why did it take my own daughter to teach me? Was my heart so hardened that there was no other trial to shape me? Why couldn’t it have been me? Not her, Lord, not her.
I know the right things, but my heart has a hard time coping with the realities. I know I have SO much to be grateful for. The doctors are confident that Charlotte will eventually walk. I know that, and yet guilt and pain often rack my body in waves I think will overtake me.
But Christ is there, He is there saving me again and again. The storm is there all around me and yet so is HE.
Christ is helping me to focus on the joy. The joy of Charlotte doing things that I’ve always wanted for my child.
Her bouncing on her Papa’s knee.
Her experiencing the world through her senses.
Her tasting honeysuckle for the first time.
Her laughing in delight at silly faces.
Her experiencing the love of others.
If I take a breath, I can see all there is to rejoice in, and the waves don’t seem quite so impossible.
