I’m home. Lucas isn’t. Abigail was sleeping. I whispered anyway. "Hi baby." And her eyes darted open. She stretched in her crib and flashed me a smile so wide it made me cry. "I’ve missed you," it said, and I swooped her up and squeezed her. We twirled around the room. "I love you, too," I said. And then I stopped and looked at her. She turned her head and began to search for Lucas, staring at his crib. Then I cried some more. "He’ll be home soon," I said.
"You know what I’m scared of Phil? I’m scared we’ll give all this attention to Lucas, and Abigail will eventually grow resentful."
"Trust me, that’s not going to happen." I know we love them both, give them each an absurd amount of attention, but with all the doctor visits and appointments in his future, she might feel slighted. I’m over thinking again, I know. Still, I want to be mindful of it, don’t want to become that cliche of a family with a pissed off sibling, mad at her sick brother. I don’t want him to be sick.
"You’re going to see him doing a lot of things you’ve never seen before" the neurosurgeon said. "A lot of parents tell me they had a laid back baby who’s now suddenly a troublemaker. Well they were supposed to be a handful the whole time. Now Lucas is going to start to act like Lucas." I don’t know what to expect; though, I’m excited to hear that he’ll be doing better going forward.
He now has a shunt, and with it comes regular appointments with his neurosurgeon to ensure the shunt is working. We’re to look for subtle signs, signals, that something might be wrong. I don’t know what these signs are, but on my quest for more information, I studied a list of symptoms of shunt malfunction or infection that listed: irritability and sleepiness. Are you kidding me? That’s any baby. Vomiting, fever, or those "sunsetting eyes" are obvious signs. I hate that fucking term. "Sunsetting eyes." It reminds me of Peter O’Toole, for some reason, walking off into the sunset of his life. Poor feeding? Even Abigail is a poor feeder some of the time. I don’t want to grow into a hypochondriac.
Along with all the doctor appointments, an occupational therapist and speech therapist will be coming to our home to observe and work with Lucas. "But you’ll also want to supplement that with a private OTPT." Occupational Therapist / Physical Therapist. I’m learning the lingo. I wish I weren’t. All these visits, all these symptoms and signs to watch for, and all that worry and anticipation. Waiting to see. Knowing more surgeries will be in his future. Replacements. Possible malfunctions. He’ll outgrow the shunt he has now; and he’ll need surgery again. This doesn’t go away. It could always be worse, and as I read those words, a part of me says, "I don’t want it to go away!" I mean, we deal with it, we just do. And of course we will.
Mainly, I just want to know that our baby is safe. That he’ll be okay, that it won’t ever get that bad again. That he’s out of danger. He’s now doing so much better, giggling and kicking his sweet feet and tiny bead toes, and honestly all your words and wishes and prayers have been a tremendous comfort. I’m not just saying that because it’s the right thing to do. Honestly, I was held up in that hospital room reading all the emails and comments, and I felt less alone. And believed all of it would somehow help, and it has. I don’t know any other way to say it. I, we, are all so thankful for the extraordinary kindness of strangers. It has been such a comfort. And has really made me feel so much less alone. Not less scared, but less alone. Thank you.
Lucas seems to be doing well. He’s tracking, following objects, and watching us. He cries when he cannot see us, which wasn’t the case before. And all his stats are fine. He had been eating 8-9oz. of food per feeding at home, and now, anything more than 4oz. causes him to throw up. So we’re waiting to see what the doctors say about it. If it’s just a case of too much food too soon, or if it’s nausea and something about which to be concerned. We’re hoping he comes home today. Abigail looks around the room and knows, 100%, that something, someone, is missing. And I’m sure somewhere inside him, he’s missing her too.
