Here’s a partial list of some of the unexpected things I’ve learned about over the past few years. Call it a manifesto, call it a laundry list. I think some of this stuff might make you laugh, and maybe also reveal an alternate universe that may have been obscured before. That’s what happened to me.
HOME FUCKING HEALTH CARE: What a strange world this is! Have you ever noticed any nurses walking around your neighborhood? I hadn’t either. But now that we have a couple that walk right up to our door and into our lives every day, I realize that I have many neighbors in this parallel universe. Look around as you walk down your block. You might notice one or two of these women walking down your sidewalk wearing autumn colored scrubs, or scrubs with mickey mouse or dinosaurs on them. Oh, the stories I’ve got to tell…
CHAIRS: Some people need chairs that offer a lot more than a seat, back and four legs. Without those chairs, these people are adrift.
THE BRAIN: ‘Nuff said. No one really knows too very much about it so when you’re trying to heal one, you got to do your research, find your mentors and then do your own thing.
BOOKS: There are a couple books on the brain which gave me ammo.
THE NICCU: The neo-natal intensive care unit. I’d like to develop a video game called, “Get My Baby Out”, based on our experiences. There are so many specific sounds and dastardly characters to draw from.
BEFORE/AFTER: Life before was gray. Life after is rich. Life before was simple. Life after has meaning. You get where I’m going…
If you are just tuning in now, it’s important to note that ours is not a sad story. While there are sad parts for sure, it’s more like a true life adventure story. These days we have a pretty good time disagreeing with all the doctors and nurses who looked at us so sadly after Maceo was born. We enjoy living out a big fuck you to those who told us it was “…bad, very bad” and to prepare for the worst. It was impossible not to take that personally, odd as that may sound. The anger, confusion and mystery around a baby born hurt are hard to overstate.
There was one pediatrician whom a friend of ours brought to the hospital one morning to try to help us understand what was going. Don’t know what we’d have done if he hadn’t appeared on the scene. It was about 5 days after Maceo was born and we were in a daze. This doctor was the only one out of an army of medical professionals who gave us hope. He said, “Don’t believe anyone who tells you what Maceo will or will not do, in terms of walking, talking, speech, etc. At this moment, there is no way to know what his life will be like. You two will be his biggest advocates and whatever he does or doesn’t do will be because of what the two of you do for him now and into the foreseeable future. Anyone who tells you any different, doesn’t know what they are talking about. Don’t forget that.”
So that’s what we do: everything we can. Here is where we are today: Maceo cannot walk unassisted, talk, swallow very well or hold things in his hands for too long. And yeah, sometimes we get tired, and sometimes we get bitchy, and sometimes we get sad. More often, we marvel at this kid and how hard he works and the things he says on his iPad, and his smile, and his love for/opinions about music and how we can love one little ninja so much. This blog started out an admission of fatigue, but I guess sharing it with you, combined maybe with the handfuls of vitamins I’ve been taking, have me feeling pretty all right. And that’s got to be the way it is because we have lot of work to do and because the only way out is through.
Happy Halloween y’all!
More to follow.
This morning started at 6:30. Joe’s alarm went off, he got up and I stole an extra 15 minutes in bed. On Mondays Maceo has physical therapy at eight o’clock and then speech across town at ten. I know if I am in the car, going down my driveway at 7:15, then I will walk onto the sixth floor therapy unit at exactly 8. I usually roll quickly in at ten after. In this new post-Maceo world we’re living in, many times throughout the day, I find myself playing a rather intense game of, “How many minutes can I squeeze out of five minutes?” It’s kind of insane but sometimes it actually works. Anyhow, if Joe is around before the kid and I leave the house, he helps me load the car with our daily travel gear which is comprised of the following: Ormesa New Bug supportive chair, which normally used in the house, snaps to a stroller base and doubles as a stroller chair, iPad with stand, tray which attaches to chair, suction machine to keep airway clear when needed, bottle of homemade formula in cooler, food syringe, paper towel, diapers, bibs, diaper cloths and shoes which I usually put on him right before we get out of the car. It’s a lot to lug around but much easier than what we brought around during the kid’s first year.
At that time he was on oxygen during the day, so we carried around a small O2 tank in a black shoulder bag, and a food pump through which he ate via a little feeding tube in his stomach called a Gtube. Thankfully, he now needs O2 only very occasionally at night or when sick. We used the food pump until he was about six months old. After that he started getting his food through 20 ML food syringes which fit directly into his Gtube. Joe used to say, as we were getting used to things, how nice it would be if he could have a Gtube. “Food is such a pain the ass, you gotta stop what you’re doing to eat all the time, and it would be so much easier to just stick it in there.” I really love food so I don’t agree but one thing is certain. In terms of getting food into our kid, we do have it a lot easier than many parents. While I really wish he WOULD fight with me about what he wants or doesn’t want to put his mouth, barring that, the Gtube is not that bad at all. Where a lot of parents have to fight to get their kids to eat and make sure they get enough, and navigate through their likes and dislikes, and sugar, and food allergies etc, what we do is a walk in the park. Another ongoing game I play is to look for how good we have it. Maybe that’s weird but, it helps prevent the other game of how this whole thing really sucks.
While at physical therapy, I got a call. Our speech therapist is sick today, so no speech for the kid. We came home, and Joe took over kid duty. One thing that is new to our regimen as of three weeks ago, are a set of functional neurology exercises. These are a series of movements that take about 7 minutes to do, which provide vestibular input to Maceo’s brain. The idea is for these movements to activate the specific parts of the brain where the kid got hurt. The more and the longer those areas are activated, the more repair can and will occur there. Dr. K, our functional neurologist in Oceanside, asked us to do them twice every hour, with a minimum of 12 cycles a day. He said he is very optimistic based on how Maceo reacted to the movements in the exam. Joe and I kind of enjoy doing the exercises and the kid does too, so though we don’t know exactly their outcome, at the very least, they are another set of stuff we do together.
So right now, Joe has taken over for me with Maceo, doing the exercises so I could sneak in here and write a for a bit. It really bugs me when he has to miss appointments, but I’m also glad for the chance to write. Now it’s time to warm up my voice and get out the door. I’ll be in the studio today with my friends Lucy Woodward and Michelle Lewis. We have a new band called The Goods.
More to follow..