Leg Braces and Grieving

I can’t say why exactly, but certain moments in life send me back to that day I found out that Ariana had brain damage. And I go back to that place, heartbroken and scared and vulnerable -- as if I have never overcome that state; as though I had never grieved at all.

Now is one of those sad times. Yesterday, I took Ariana down to St. Joes Children’s Rehabilitative Services (CRS) for her Orthopedic appointment. Ari gets scheduled for many of these types of appointments, but until now, they have all been informational at most. I had no reason to believe that yesterday’s appointment would be any different; that it would be any more than a routine check. But it wasn’t.

When the doctor entered the room, he only needed a minute to examine Ari’s feet and legs to ascertain that Ariana would need leg braces (AFOs). He said that Ariana’s legs were getting very tight and her feet were starting to point. Apparently, the difference between her last appointment, six months ago, and now is vast. The AFO’s are designed to prevent further tightening and shortening of her ligaments. He said that they are needed if we want to prevent surgery down the road. Ari is to wear these leg braces 20 to 23 hours every day, indefinitely. The doctor also recommended that I consider starting Ariana back on Baclofen, a medication designed to reduce her tightness to help avoid hip displacement, curvature of the spine, etc. He told me this so matter-of-factly that I didn’t think to digest what he was saying. I didn’t ask him any of my questions. Ariana waved and smiled enthusiastically at the doctor like he had just given her great news. I just scheduled our casting appointment for January 5th and went home feeling like I had lost yet another battle.

On the 90 minute drive home, the news finally began to sink in. And sink it did -- like a ton of bricks. I felt like I had just failed Ariana in some crucial way. I began to think about Ari’s future with leg braces. Would these braces would be the first things that people would see when they looked at my baby girl in dresses? Would Ari be able to wear any of her pretty shoes anymore? Will the AFOs would be cumbersome to put on and take off? Will Ariana experience discomfort, even pain, with the AFOs pulling her very tight feet in a constant stretch? Will other children focus on the apparatus instead of her friendly face and beautiful smile? Would she still be able to sit and roll and learn to crawl? The list of concerns and worries went on and on. I just wanted to rewind the clock. I wanted to go back so I could do her foot stretches more diligently, and keep her on Phenobarbitol so she would never have had her latest seizure. I know if only I could have known… if I could go back, we could have avoided these braces altogether. It struck me that this is the first time that Ari would have something about her that would alert even total strangers to her disability, and I yearned to protect her.

I let the tears fall last night when I was telling Jake about all this. It wasn't the first time, and it won't be the last. Like he always is in these moments, he was so supportive and tender, and he knew just how to talk to me. Recently, I have come to the realization that I haven't really allowed myself to fully grieve for what Ariana is going through -- for her or for me as her mom. There is and has always been such a pressing need for me to be strong for Ari and for the rest of my family that I haven't gotten to just be sad. Every morning, I put on my brave face and root and cheer for her every accomplishment. Meanwhile, the days go by, and I just end up storing the sadness in a place where I can deal with later. The only problem is, later never comes. When I hear of other people's life tragedies with their children is when my feelings tend to emerge. I have always found it easier to mourn and grieve for the losses of others than for myself. I feel that in vicariously living through their experiences, I can likewise experience the sorrow from a safe vantage point. Allowing myself to actually feel and live my own sadness and grief? That's just too debilitating and overwhelming. To open that door right now might bring down the house. I just don't go there. As unhealthy as it sounds, the best that I can do for now, in an effort to keep the floodgates shut, is to deal with these things just the teeniest bit at a time (and keep reading my Chicken Soup for the Soul).