By: Dawn Thompson
A doctor once told me, “If today is a good day, then, it’s a GOOD day!”
At the time, my four-year-old was hospitalized for acute ataxia of unknown origin. He could not sit, stand or even hold his own head up. Normally this would not have been as big of a concern except for the fact that this was not following a virus or illness and also that it was the second episode within a six-month period. In addition, he was able to talk clearly, so this event did not make sense with his known condition of Neurofibromatosis, a neurological disorder that causes tumors to grow along nerves anywhere at anytime.
The first day he was admitted to the hospital, we were so scared that it was a brain tumor causing this. After that was ruled out, we feared there was something wrong with his liver. When the immediate life-threatening possible causes were eliminated by a team of experts during a ten day period, we were plagued by disheartening thoughts of whether or not Dylan would ever regain his balance or if he would stay “shaky” and need to wear a helmet for the rest of his life.
We had no answers at all, not as to what was causing it, how to prevent it, or if it would ever go away. We lost sight of the MOST important factor of all, which was the ability to enjoy Dylan enjoying anything! We were so worried about the future, we somehow lost focus of the here and now. It wasn’t until one morning when the team came in and asked how Dylan was doing. I started off by listing all his problems (so that they could fix them, of course). Then I added, “Despite all this, Dylan has got to be one of the HAPPIEST kids.” He was not fussing through all of it, but was cheerful and loving. I added that overall, it was a good day but then quickly followed that with a comment about what the future may hold for our little one. The doctor answered, “If TODAY is a good day, then it’s a GOOD day.” After hearing that, I understood a few things.
Even though some conditions and disorders make life uncertain for some children, life is uncertain for everyone and so we need to enjoy each day, each gift, without expectation. We also realized is that our fears and concerns were based on expectation. We had the mentality that our child was entitled to the average childhood of that of a healthy child and had nothing else to compare it to. Now, we can see that not only was his childhood not average, it was EXCEPTIONAL in many blessed ways.
This is a picture of Dylan mocking a doctor, under his desk. Don’t worry, this specialist has known him since he was little and understands how kids would rather “play” than listen to all the medical jargon. I say “jargon” because it sounds like nonsense to a kid that is not only half deaf, but who is also having a good day
As we get ready to go school shopping this year, we are preparing for Dylan’s upcoming visit to the surgeon in hopes of getting his feeding tube out before sixth grade! He has worked really hard to become independent and we are grateful that he is able.
Wishing everyone a healthy and happy new school year ahead!