I knew this day was coming. I was even looking forward to it, for marking a year is how we celebrate endurance. Still, as I typed the title, I found myself getting choked up. Those words, “Enter the Deuce,” take me back to a place scarier than the underside of any car, harder to fathom than any prose written in the Middle Ages. But they are also a reminder of how thousands upon thousands of people I don’t know, not to mention hundreds that I do know read with rapt attention Matthews difficult entry to this world.
And the reason those days are still so difficult, the reason that despite our relief at his blossoming is both simple and yet inverted. Fifty years ago he wouldn’t have survived his first hour, but now, a year later, he’s so much more than he was that morning. He’s got a personality that is happy, sunny enough to engage even people who don’t like babies and an appetite that seems to be a rebellion against all that time on a feeding tube. This. This is what we almost didn’t get. The more he is, the more I see what we would have lost.
And so how is he? He’s fine, in broad strokes. He has no lingering issues from the chylothorax effusion—that leaky doohicky that collapsed his right lung and forced the NICU to recommend what was ultimately a very successful surgery. That said, all that time in the NICU on his back in the incubator meant that he was starved for human interaction and he became very proficient at turning his head right and looking up so he could see his nurses when we weren’t there, which was a hell of a lot of time given the best we could do was usually only 10, maybe 11 hours per day. And there were days I missed. That still hurts.
So our little Deuce was really good at turning his head to the right and looking up. Turning his head left? Well, on that his performance was lackluster. We couldn’t fault him; all the incentive was at his right. It also meant that his head was a bit misshapen. A bit flat on the back and to the right and his right ear was forward of his left ear and stuck out a bit, in comparison. So there has been some physical therapy and a bunch of exercises and any time I hold him I try to position him so that he will have to turn to his left to see what’s going on. We visited with a doctor for a helmet evaluation and she said he was on the bubble, diagnosis-wise. She recommended against it, telling us that by the time he enters kindergarten he’ll be fine. Honestly, we’ve seen such an improvement just in the last two months, I have to really look to find the issues. He looks like a normal baby.
All that time in the incubator had another effect on him; he started moving around much later than most babies and the fact that he’d picked up a fair amount of weight with no corresponding increase in strength meant that he was really behind in learning how to roll over, sit up and crawl. As a matter of fact, he’s only managed to start getting his knees under himself in the last week. So he’s a bit behind developmentally. That could have happened even without the NICU, so I’m not worried.
In my last post about Matthew I shared that he had a couple of visible scars and my hopes for how they might fade over time. I’m pleased to say that the last time I made an effort to look, all I could find was the biggest of them, at the incision site for the tube that drained the fluid from his chest.
Of the many goals I had for RKP when I launched it, posting highly personal stories wasn’t on the list. The circumstances that took us down this road continue to amaze me. Had there not been such an outpouring of support following my crash, I could never have published the “Enter the Deuce” series. But there’s no question I would have written it, so I can’t help but wonder how RKP would have suffered as a result. There were some slightly awkward meetings with potential sponsors at the Sea Otter Classic. Wayne, our ad sales director would try to explain, delicately, that we had deviated a bit from our usual content for a few weeks. Eventually, I just started volunteering, “Look, I didn’t do my job for six weeks. But it didn’t hurt the readership.”
There are rules against that, you know?
So here again, I have to say thank you. Your support bolstered me through what was a nightmare existence in which the stress got so bad it compromised my balance on the bike. I had to stick to flat rides for more than a month. You also bolstered a site that might not have survived had you not been willing to tune in to read about a baby you had no reason to care for. That continues to make me wonder.
Don’t get me wrong, it’s not like I don’t understand the reasons the bunch of you continued to read, but at root there is a simple and mysterious human act. You bestowed on me a kindness. I’ll be grateful for it to the end of my life.
So we’re going to have a bit of a birthday party His Tininess the Deuce this Saturday, February 22—the Deuce’s actual birthday. I am compelled to invite each of you reading this. If you’re in the greater LA metropolis, you’re welcome to join me for a ride Saturday morning. Saturday afternoon, we’ll have a little picnic at a local park complete with food and beverages (some benign, others less so). If you’re interested in joining us and raising a glass to the Deuce, drop us a note or friend me on Facebook and I’ll add you to our invitation list.
Again, thank you for your support. Now, if I can just get him to sleep through the night.