Having a newborn with Lissencephaly is like sending your child out across a mine field every day in order to keep them safe. In the moment, nothing is really wrong. You have a newborn. He struggles to keep his head straight, he sleeps, he poops. But every day you send him out across that field. Some day the bomb will go off. Probably not today. But you know it will. And you have to learn every day to come to acceptance of that reality. So you try with everything in you to welcome that child home every evening and re-memorize their face in case tomorrow is the day that it all goes to hell.
I’m not implying that we expect to lose Oliver suddenly. But we know that we have a strange future ahead and the days are counting down until that becomes…more true than it is now.
Oliver’s seizures are controlled by his medications and keep him down to 0-2 per day. This seems pretty good, except the neurologists want ZERO. Period. And he’s growing so fast (my 11-wk-old is wearing 12 month clothes) that his med dosage can’t keep up. We have to raise it every couple weeks. And the last time we talked to the doctor, it sounded like if his current dose doesn’t work (it doesn’t), we may have to go to adding a second medication. He also said that this only gives him about a 15% better chance at stopping them than being on just one drug.
The other problem is that any seizure med comes with side effects which can range from lethargy to digestive problems to aches or irritation. So as we raise his dosage to control the seizures, we also raise his likelihood for the side effects, which are already showing up.
The Tennessee Early Intervention Services is getting him into their program, making any recommended therapies free to us, but it might be several more weeks before the state gets us fully processed. And while I’m able to still be home for another few weeks thanks to an amazing group of coworkers who donated PTO from their own banks, we still need somewhere for him to go every day. And instead of worrying about simply which daycare we like best, we now have to worry about which one can handle monitoring him for increased seizure activity and keeping really detailed watch on his developmental milestones. We have appointments to tour the two main special needs daycares this week, but I don’t think they have openings.
He’s an incredibly good-spirited little man, despite everything. He rarely cries. He smiles and coos at the people he recognizes most when he’s really awake. I even posted a video of him singing with me today on my Facebook page. And maybe one of my greatest happinesses is that he really seems to like his room. He smiles and looks around so intently. He even coos at his mobile when I tap it for him. There was a moment after his diagnosis when it struck me that he might not ever recognize any of the things we so lovingly chose for his special room and it tore me open all over again. Now I know that he probably won’t ever be able to tell me so or roughhouse in his teepee, but he notices.
Meanwhile, I struggle daily to be even remotely the mom that I used to be to Margot. She’s three. Seriously three. And I’m sleep-deprived. It’s not a good combination. If we can come out of this year still liking each other it will be a glorious act of God. But she makes us laugh. (Right now, we’re watching Monsters Ustaferstidy – or Monsters of the Ustity, depending on when you ask.) And we need to laugh.
So we go on. We have to go on. And I take comfort in the tons and tons of parents of special needs children who tell us that their child teaches them a different kind of love than they could ever experience otherwise. I want to learn to love better, deeper, more unconditionally. Maybe Oliver can teach us all.