As parents, we feel no worse pain than when our children are sick or hurting. Of course, you do all that you can to help them feel better...but sometimes it doesn't help. I have felt that pain more times than I would ever wish on anybody. Since Aidan was a baby, I have felt that pain come and go, on and off. If it wasn't the stiff body arching back and inconsolable crying, it would be the numerous inexplicable midnight wakings with a groan and grimaced face. When Aidan was a baby, I often attributed some of the inexplicable wakings to teething. Some people would tell me that children often experience real growing pains. Did Aidan experience that? I'm not really sure. But, over the years, I hesitate to admit I have given him quite a bit of over-the-counter pain relief medication (only at night and not more than a few times a week). I am definitely not one to reach for the medicine bottle right away, but what was a little reassuring for me was that often times when I would give him pain relief, it would help him rest. When you've tried singing, rubbing their chest, rocking, and counting sheep, etc. and they still can't get to back to sleep, and you're sleep-deprived, exhausted and frustrated, a little OTC pain relief seems like a reasonable option. As Aidan has grown older we've learned more about his condition and what goes on with his body and what's happening in his brain and it continues to be a learning experience. If you can imagine a huge muscle cramp that emanates throughout your entire body...that's what Aidan's body seems to go through non-stop. You gotta think that it's painful. Later, after numerous tests and seeing doctors, specialists and therapists, we started giving Aidan medication to relax his muscles, and reduce the spasms and contractions which caused him discomfort and often disrupted his sleep. Fortunately, this has helped Aidan be more comfortable and has helped him be more manageable for us, his caregivers.
I used to think that when Aidan got older that his physical issues would stabilize. However, it has not. The issues have just changed. I try to be informed by researching the internet and talking to other families, even getting second and third medical opinions. But, I've come to realize that doctors so often don't think outside the box. It seems as though they have standard things that they prescribe for patients that have certain problems, and they don't seem to think beyond that. It takes my own research and inquiry of the docs to get them to try something different. And its not anything that they hadn't heard of, but they just don't think to suggest it to you. I find that frustrating and a little disturbing. Thank goodness for the wealth of information on the internet!
I often count my blessings when I think and hear about other more severe issues other families deal with with their special needs child. But on the flip side if I think about all the treatments, traditional and alternative therapies Aidan has been through since infancy, I get a little disappointed at the lack of true progress he's made to this point. Countless stories of other kids going through one intensive physical therapy session and they are taking steps and starting to walk...Aidan has done at least half a dozen intensive physical therapy sessions and is still unable to roll over, let alone sit up or walk. But, I always try not to let my mind go there...it can get depressing. I try more to think more about the positive things I can feel good about...that Aidan can travel with us, that he is cognizant, easy-going, good-natured, and has a great sense of humor.
When you're the parent, it's really difficult to make big decisions that are life-altering for your child, not really knowing if the outcome will be good or bad. Especially when these decisions require surgery. For example, the decision to get the feeding tube and the surgery to "fix" reflux (the nissen fundoplacation), and the decision to get the implanted medication pump (the intrathecal baclofen pump) that continually delivers a muscle relaxer. We try to make sense of all the information and expert opinions and trust and pray and hope we make the right decision for Aidan without putting him through too much pain and agony. With Aidan, I fear that we'll face more life-altering decisions in his future. I just hope that they'll be the right ones.
