There is little worse in life than time, when that time is spent in fearful anticipation of some dreaded event. Were you forced into the very same event with no warning it's almost certain that you could maintain your composure and ride your adrenaline until the ordeal has passed, but with the burden of preparation you have the opportunity to imagine. You imagine the worst outcome possible, you cannot help it.
I spent the few days leading up to Row's surgery feeling an anxious frenzy growing. I was trying to organize things in the new house (having been in it only about a week) as well as plan and pack for what we knew would be a long hospital stay, and I felt a ticking within myself. Time was growing short and I wasn't ready...but not ready for what?
I had made my lists and packed efficiently. I'd packed plenty of clothes and distractions for the trip, everything we'd need. My house was well organized, for the most part, and clean. We had been prepared for how the procedure would go and how his recovery would play out. We knew what skills he would permanently and temporarily lose and about how soon he'd be back to "normal".
So what was I not prepared for?
I was not prepared to lose my child. To say goodbye to him. To kiss him for the last time. Because, odious as the thought is, it was entirely possible that this operation could have taken his life; the chances were small, but by no means non-existent. This procedure is rare, and although Row's surgeon is definitely the guy you want for it, he's only done it about 50 times, so, compared to, you know, an appendectomy, it's pretty rare.
So, in my preparation, I had to try and brace myself for death...for my baby's death.
I know that's devastating to read, and I'm sorry if I've caused a lump to rise into your throat. Believe me it is nothing to the one a was forced to suppress (yet often succumbed to) for days and days.
You see I HAD TO busy myself with lists and preparation just to save myself from dwelling on what was to come, because if I relented and let myself truly think on what I was fearing, I would have been lost and useless and would have failed to do what my son needed of me. I needed to be strong and pragmatic, although all I wanted to do was strap Row to my back and run away, to continue ignoring the problem into eternity.
I, however, did no such thing. I stayed and worked and waited, and did my best to joke myself away from the truth, since thinking too seriously about it was pointless. The decision had already been made; we were simply awaiting the follow through.
Now on the day of the procedure, my dear Facebook friends rose to my challenge to distract me during our eight hours of tense waiting. You sent me memes, videos, links to hilarious things, riddles, games, and amusing anecdotes...anything to keep my mind in the clouds and not in that small, (though, thankfully, private) waiting room. I thank you all immensely for your service, because each time I allowed a momentary lapse in my distraction and I envisioned what was happening to my baby's head, I nearly vomited. My stomach would drop, and I'd get a horrible pain right at my C-Section incision (creepy, right?).
Now I have to explain another element that contributed to my sense of dread. The possibility that we were making a mistake. Now with Row's condition, Epilepsy that cannot be cured medically, YES, this surgery IS his best chance to lead a normal life and develop appropriately. However, for over two months prior to surgery we had seen nary a seizure at all. The very strong medication he'd been on (Vigabatrin) had given us some real seizure relief. This medication, though, cannot be used long term because it has some very heavy side effects after a while, so it was by no means a permanent solution, and in actuality he was still having seizures in his brain, they just weren't manifesting physically, so they weren't inhibiting his daily life.
So, picture if you will, a sweet baby who appears not to be having any seizures and has quickly caught up on developmental milestones he'd previously been lagging on and he's happy as a little clam and cute as can be. Then you suddenly take him to a hospital, have his skull opened, half of his brain detached, and he is left incapable of moving his right limbs, unable to open his eyes or breath on his own, and looks so bruised and swollen that his own Mommy would have trouble picking him out of a nursery line up.
I think it's understandable, then, that said Mommy couldn't help but think: "We've made a terrible mistake. What have we done to him?"
When he was in the PICU, looking terrible and broken, I was so sick, worried we'd done him an awful disservice, destroyed his chances completely. Luckily his recovery progressed by leaps and bounds and in a few days, it wasn't so bad...but in those first days I truly was terrified that I'd allowed my child to be broken...
