Sunday, August 19, 2007

When do you call?

Bella is a child that always feels odd in some way. We have attributed alot of her complaints of discomfort to growing pains over the years, although there certainly has been her fair share of "real" issues. Over the past two weeks, she has been complaining of joint pain. It has gone from her ankles to her arms and more specifically an elbow. Today she was so bothered that she stopped playing and grabbed some ice to put on her arm. The elbow that is bothering her is the same elbow she had surgery on almost 6 years ago to pin and correct a break that went through the growth plate. Immediately I raised an eyebrow when she told me that it is really uncomfortable to straighten it.

After surgery, her then surgeon told us we would need to have xrays done off and on for at least 15 years. He indicated that it was possible, because of the kind of break, that the bone could develop a growth which is referred to as a fishtail pattern. This could inhibit the use of muscle in the arm and, by the time she is near forty(40,)the use of two of her fingers on that hand. I remember looking at my husband so many years ago and asking, "what the heck?". It couldn't have just been a normal break. Those that know Bella personally over the years, know that she has had her "not so graceful" moments and that if there is a needle in a haystack, she'll definitely be the child to sit on it. Fixing obvious ailments is relatively simple; hear the pain, see the blood, fix the cut, etc...etc...

But what about those aches that you can't see? When do you know you need to push for tests or xrays or specialists? When is it okay to assume they are fine and it's just a fluke or nothing? In nine (9) years Bella has had to endure many tests, long and painful tests in many environments from doctor's offices and emergency rooms, to specialists and hospital labs. She has dealt with territory that would be unfamiliar to most kids her age, including a diagnosis of Irritable Bowel Syndrome, and to date an undetermined cause of painful ongoing Urinary Tract Complications. Each of those discoveries were made after months and years of my poking and prodding physicians to do something "different". To insist that it wasn't normal.

Both of my children spent some time in the NICU after premature birth. Fortunately, Bella's was very short, five days in fact. But one thing that I learned then and especially through a second mandatory lesson in NICU 101, is that I can not risk taking anything for granted. These children start out different in the world. They have a lot less "going for them" from the gate and at such a young age they have to learn to battle. For many of these kids thing don't change when they get home. Most people out there assume that all is fine when they are released from the hospital. That like all other children, they will have their bumps and bruises and infections and viruses. But no one else really knows how painful it is to see, in some fashion, daily reminders of their "early start". Whether it's an inability to "feel" as most children do, an impossibility of understanding sleep and eat or simply the small white marks that forever lace their skin. There is always a reminder to us Moms that at some point in such a short time, our children's lives hung in the balance.

Other parent's who haven't experienced first hand this introduction to life (which has become a way of life) simply can not understand. It is so easy for them to label us as the "overprotective" parent, or for the nurses to refer to us as "that mother that won't let go". But just as you wish wellness and peace for your children, we do too! Our daily want to ensure some normalcy for our children is no different then the parent who has watched their child suffer through a long illness or recover from a horrific accident. The pain is the same. The reminder of a helpless feeling. Knowing that you planned on protecting your child, but the ever present reminder that you are incapable of truly doing so. Not wanting to see your children suffer. Be it little or big, there is no difference between you and I, the normal parent and the preemie parent.

ALL of our "issues" may not be related to prematurity, but our drive to ensure that our children get the best care, the best step up, and the best chance in life IS!

Children aren't able to insist, to distinguish. That is a parent's responsibility. So when is it okay to call? To push? To assume? I don't think there is a definitive answer. But as for me.........I'm calling tomorrow!

1 comment:

  1. I hope all is alright.

    What you say is so true. We appreciate things differently once you have a child in the NICU. We love to see the strives our children make, yet a careful eye is always there watching them. If someone can't understand that, pooey on them. You do what you need to do.