Some of the more faithful Rx for the Soul readers may have noticed that I was a little short on words last week. There were lots of Rx re-runs because I was pre-occupied with our youngest son who was home sick with a little bug all week. Although viruses are par for the course for any school age child, when you have an immune system that goes rogue like our son’s does, you never know where it may lead.
When something very similar to this happened last year during another weeklong viral/bacterial illness, things went from bad to worse very quickly. Rather than fighting the bug as it should have, his immune system attacked his brain and his leg muscles and he ended up being transferred to a children’s hospital in another state. After nearly a week spent in two different hospitals, our little leaping gazelle of a boy came home needing to use a walker for a few days. His leg muscles healed quickly after that, but it took a full six months for the encephalitis (brain inflammation) and the pain in his feet to recede.
To say that I have second guessed every choice I made during that time period last year would be such an understatement. What if I had brought him to the hospital sooner? What if I had argued harder for the antibiotics that the first hospital said he did not need? What if? What if? What if? I have lost more nights of sleep to those ‘what if’s’ than I care to admit.
As moms I think we often have this ridiculous notion that we are supposed to be all knowing and all powerful. For almost a year now I have lived with the quiet worry that the reason Ajay got so sick- the reason his body on that occasion attacked itself to such an extent, was my fault. (Never mind that there are only a handful of treatment clinics in the country that formally treat his immune disorder- and because an estimated 160,000 children have it, getting into one of them is next to impossible.) Even though I knew this, I still felt overwhelming guilt that I had failed him.
A lot has happened since last April when my boy got so sick and guilt sunk its teeth into the soft flesh of my being. In July (because of what had happened in April) Ajay was accepted into one of those difficult to access treatment centers. And now, every six weeks, we gladly hop on a plane and deliver him to one of the best children’s hospitals in the country where he is poked, and probed, and scanned. Every nuance of his immune system remains under surveillance by an entire team of specialists. And guess what? Even with the best eyes in the world on him, even with daily prophylactic antibiotics on board, even with all of the scans, and the labs, and the intricate diagnostics- this week his body once again pulled off a sneak immune attack that split in the same two directions as last time- brain and leg muscles. Because the exact same thing that happened last year when Ajay was on my lone watch had now happened under the full surveillance of some of the best doctors in the world for his condition, Guilt had no choice but to release its chokehold on me- and boy let me tell you that taking a full deep breath feels wonderful.
In a perfect world, Ajay’s immune system would behave itself and do what its supposed to do… and although I believe we will get him there, we’ve not arrived quite yet. Even so, the simple combination of a well informed treatment team and a momma (and dad) who are trying their best, seems to be pretty powerful medicine- because other than missing a week of school and enduring a lab draw, Ajay is no worse for wear. (Tonight as I type this, our leaping gazelle of a boy is up to his usual tricks- trying to get out of brushing his teeth and wanting to stay up just a little bit longer) and by Monday morning when you read these words, he should be slinging his back pack onto his shoulders and heading out the door toward school, running at full tilt. In the big picture- this week may not have changed him, but it has changed me.
Being a mom is tricky business, and the longer I do it ( 24 years now and counting) the more I realize that it is an art and not a science. The events of this week have left me with a clear understanding that life is rarely going to give me the luxury of having 100% certainty in the decisions I make on behalf of my children. In the future, I am going forward with the wisdom that; perfection is unattainable, guilt is useless, and not having 100% certainty at all times is acceptable, as long as I am doing the very best that I know how to do, and am doing it with 100% love.
Your words are invaluable no matter how often repeated. Thank you for the time it takes to do this.
Thank You Jo Anne- appreciate having you here at Rx for the Soul <3