I wasn't sure if I wanted to talk about this or not. I wasn't sure for a couple of reasons. First, right now Roman isn't going to care at all what I write on the internet-but one day he will. Second, emotionally, it's one of those "punch to the gut, help me I can't breathe" kind of feelings. And last, because in two years of life this is the first we've had to discuss or concern ourselves with this.... with cathing.
There are some parents whose children don't have shunts, Roman does.
There are some parents whose children have had few surgeries, Roman has had 10.
There are some parents whose children can walk, Roman doesn't...yet!
There are some parents whose children have no chiari symptoms, Roman does.
I'm not saying cathing is the worst thing in the world, I'm not even saying it's the worst thing in the neighborhood. I have come to know and trust a great many women who cath their kids. If they tell me (and they do) that cathing is no big deal-I believe them 100%.
However, we have gone so long with it just being a "non-issue" and kind of counting ourselves lucky that it hasn't been a part of our Spina Bifida journey. In fact, we even fooled ourselves into saying, "If it hasn't happened by now, I think we're in the clear."
So it should come to no surprise that we were wrong again and that Spina Bifida has, like a big jerk-punched us in the gut...again.
We got the news Monday that Roman's bladder isn't doing it's job correctly. I could bore and confuse you with the medical jargon, but the honest truth is that I still don't completely understand it enough to explain it with much confidence. Basically, he has a high pressure bladder. It didn't skip him. Like so many, many, many of his rockstar buddies-he will eventually need to be cathed.
Right now, his bladder is not doing it's job, but as far as we know his kidneys are. We'll know more with an upcoming renal ultrasound. Pending the results of that our game plan is to wait, and keep an eye on things. However, if his kidneys are being stressed at all, we'll start cathing right away.
I believe every one of us has our "nightmare." The thing we don't want to deal with, the thing we dread, the thing we were hoping to avoid. It doesn't matter how many kids you have, or if they have a scar on their back or not. We all have the nightmare.
In regards to Roman, this is mine. This is my, "please God, no." nightmare. Not because it's the worst thing that could happen, because it's not. But, because I allowed myself to get confident and a little cocky in the face of a condition that knows how to throw punches, and throw them hard.
I was thinking, since so many people want to call it, "spinal bifida" anyway why not just change the name to "take your mom down a peg-ifida"
Roman, I hope that by the time you're old enough to read this it won't matter, it won't mean anything to you. In fact, I hope it's not even stored in your memory bank. Because I hope that by then medical science will have stepped up to the plate and cured at least this one pesky little side effect of "take your mom down a peg-ifida."
I love every bit of you.