Sunday, July 27, 2008


Two year olds can't really tell you when they're in chronic pain. At two, reality is changing so frequently that anything lasting more than a few days is quickly assimilated into the norm. It becomes a fact and they simply adjust and keep moving. I feel a little foolish now to have so easily assumed that my child's frequent melt-downs were merely a part of the terrible two's... something we had managed so well until recently. I attributed it to the summer heat and starting pre-school and not getting enough sleep. Sleep was definitely an issue but what I didn't realize was that the thing keeping my daughter up at night, tossing and turning and calling out my name, was the slowly disintegrating bone in her left leg.
Legg-Calve Perthes Syndrome is a form of necrosis in the hip. The blood supply to the joint becomes interrupted, eventually causing the bone to die. There is no way to stop it and not much to be done to fix it. Once the bone dies, new cartiledge will grow and hopefully, eventaully reform comfortably in the hip socket. The doctor says that if all goes well there will be a good hip one day... not a great hip but a good hip. Little is known about the disease. The duration of each phase is unpredictable, lasting anywhere from months to years. My daughter didn't start limping until a week ago but by then the entire head of her femur had already dissipated. The doctors actually seemed pretty impressed by how little she limped or even complained.
I had watched her three days before the diagnosis, trying to keep up with her friends as they ran around at a birthday party. It was the end of the day and she was tired and her leg seemed to be out of communication with the rest of her body. My stomach had butterflies... the kind moms get when they know something isn't quite right. People were talking to me but all I could do was watch my little girl as the realization that something was terribly wrong took hold. She had started complaining of pain a few months previous but I had concluded it was probably just growing pains. I had actually been proud of myself for not over-reacting and calling the doctor right away. That is the last time I will ignore my instinct just because the doctor makes me feel a little silly every time I call.
A few days later I would be standing in the x-ray room blowing up rubber gloves and trying to convince S that it really is fun to have pictures taken of our bones... no matter how still the strange people make us hold. I'm no x-ray technician but even I could tell that something was amiss as they stuck the film over the light. The right bone was a solid chalk white color, just like the ones I had shown S a week earlier in the mock doctor's office at her birthday party. The left one however was much darker, giving it the feeling of being hollow and the top was blunted and didn't match the right leg. At that moment I was sure it was leaukemia or some other deadly disease. In this respect I am incredibly thankful. All in all, it's not very bad. My daughter will live. My daughter will be healthy. My daughter will even continue to walk. She just won't do it as well as she might have otherwise. This isn't really the part that bothers me.
What bothers me is the idea of something inside of her dying; the idea of a pain that I can't reach and a disease that I can't stop... not for any amount of medicine or exercise.
Before her leg will get better it will inevitably get worse and there is nothing I can do to prevent that. I will not be able to predict how the bone and cartilage will reform. There is no way of knowing whether she will limp for the rest of her life. Suddenly the limitless sky of the future seems to have become a tiny bit... limited. And not that I don't believe she can overcome anything or become whatever she chooses; I'm sure that she can. But suddenly it's a consideration. The vagueness of the disease combined with her young age leaves me feeling a bit under-prepared. There is simply no plan of action.
It's interesting beginning to understand the permanence of a thing like this. My initial reaction was to feel the tender sort of fulfillment that a mother feels when her child falls ill. Not that we are happy to see them sick but we are happy to be the one to console them. It is the part of mothering that re-asserts they are our own and this is our role. We are needed. We slow down, we snuggle up, we make them smile, we are reminded of how grateful we are for them. The first day I popped in a movie and made us a nest. I cooked favorite foods and read favorite books (it didn't help that she simultaneously developed an ear infection). I wanted her to rest. I wanted her to be off her feet. I imagined her hip taking a break and breathing a sigh of relief.
Then I realized that we couldn't stay in bed everyday for the next 5 years. She would eventually grow sick of chicken soup and ice cream (at least the soup)... and I didn't know what to do. How do I step out into the world with this little bird and her broken wing? Suddenly everything seemed frightening again, like the day I brought her home from the hospital... fragile and precarious. Dropping her off at school meant I couldn't watch her every action. What if she fell off the slide? The fragile bone was very susceptible to breaks. What if someone knocked her over? What if she simply falls? And today she insisted on walking nearly a mile, pushing her "Baby Eliza" in her mini stroller all the way. Part of me wanted to insist she stop and carry her the whole way. But part of me knows that growing her spirit is just as vital as growing her body. I do not want to make her feel weak, disabled, sick. I do not want to constantly remind her of her limitations. I do not know which of the two is the lesser evil.
Tonight at I watch her toss and turn in bed, asking me to hold her every five minutes (which she rarely wants once asleep) I wonder if I didn't make the wrong choice.. She moves her leg constantly, trying to alleviate the ache and find a comfortable spot for it, and I suddenly realize how long she has been doing this. How long has she been in pain while I've been putting her in time-out for acting up? Gggrrrrr....!!!
It's funny, but she hit her head last week and I had in that moment been completely convinced that I am not at all equipped to handle any sort of physical crises. I mean... I've never taken a class on this stuff (ok... being first aid certified doesn't count... it only works on other people's kids). It's the decisions that actually get me... I simply shouldn't be making them on my own. To hospital or not... to call dr or not... ice or heat... etc. I'm a mess! I'm simply not ok with choosing the wrong one. Not when the thing that matters most in the world rides on the outcome. To let her run, walk, leave my sight? Frankly, the idea of staying in bed for the next 5 years is sounding more appealing by the minute!

No comments: