Right. So the plan was to write and post a big home brewing post at the end of last week just to get it out of my system along with all of the pictures I took of the process of brewing my first batch but things change. I’ve been hinting at it for too long now.
Then on Thursday night, we finally got a new night nurse and so I thought that a good night’s sleep and someone here to help with Liam would free me up to do some posting. But I figured that sleep was more important. Sleep definitely is more important, but the problem with that is that I didn’t end up getting any. Instead Karin and I tossed and turned and tried to remember what it was like to sleep in our bed with the other person there at the same time. It gets crowded in there with two.
And then the seizures came.
It was on Thursday that the first big one came. Another followed on Friday and both times we were forced to intervene with Diastat. We changed the dose of one of his meds and expected that Liam would sleep through the entire weekend. He would need time to adjust to the sleepiness that extra phenobarbitol would bring. I knew from experience that it would also take a few days for the dose change to really have its full effect. He would continue to have seizures throughout saturday and sunday but they decreased in intensity and length. I know this drill. I’ve seen it before.
But for some reason I was really worried this time.
Maybe it was because I had to work all weekend and I wanted to be home with him. Maybe it was because he was also teething which brought along with it diarrhea, fevers and general unhappiness. Maybe it was because some very close friends of ours have a child in the PICU right now and Karin and I feel that we’ve been too lucky in keeping him from there this long. Or maybe it was because these seizures were starting to look a bit different from the events we are used to. Stronger, more intense, and the increase in meds was large enough that we were partly expecting him to take up to a couple of weeks to adjust to its strength.
Liam had a horrible weekend and as such so did his mother and I. Sure we had fun watching a movie while Liam slept but I was worried. More worried than usual…
…Until last night.
Until just before I put him to bed. I leaned over him on the couch to unhook his feeding tube and oximeter so that I could bring them into his room first. Whenever I approach Liam while he’s in his spot on the couch he swings his head toward me with a smile in a sort of grand gesture catching eye contact as I reach for his scruffy little head. I had missed that smile since thursday when either the seizures or the meds kept him from moving much at all.
I wrapped up the wires and tubes and leaned back over him to take his glasses off and give him a kiss goodnight. As my face neared his I slowed, trying to be gentle on the teething induced swelling of his cheek when he swung his head toward mine as aggressively as ever coming close to slamming our heads together. He nuzzled his forehead into my beard for a second before looking up at me and into my eyes.
A smile I hadn’t seen in four days. A smile I was irrationally afraid I wouldn’t see for a few weeks longer. A smile that said with unmistakable certainty -“Don’t worry Dad. I’ll be fine.”
I knew what he was telling me instantly. The worry rushed from me completely in a flash. I almost cried.
I hugged him and kissed him and thanked him, holding back my tears. I rubbed the back of his head as he nuzzled his head back into my neck; my beard tickling his cheek and forehead like he likes before his eyes started to look heavy with good old-fashioned tiredness.
Gone was the fogginess and the far-off look. Liam was back.
My little boy was back.
Karin walked into the living room to see me hovering over Liam as he drifted into sleep with a huge grin on my face. “What’s up with you?” she said with her own questioning grin.
“He’s fine.” I said pointing to Liam feeling the smile on my face getting bigger and breaking into a half giggle.
“I know he’s fine, look at him.” Karin said. Not really getting what I meant.
“No, I know he’s fine but I mean, …He just told me that he’s going to be fine and to stop worrying.” I said “I mean, we don’t have to worry any more. I, . . . I’ve been worried this weekend more than usual.” I’m sure she knew that but I had never told her.
“Yeah, I know me too, but he is going to be fine.”
“I know that,” I said. “He just told me.” I unplugged the vent while Karin picked him up. We brought him to his room and put him in his crib.
He has twitched a bit here and there today. He even had a very slow and mild seizure during his occupational therapy appointment, but he has also been aware and active and smiley and fun. The meds are working and he’s not living in a sleepy fog. He knew as soon as he felt better how to tell his dear old dad to smarten up and relax.
Liam is now and may always be non-verbal.
Don’t think for one second that he has ever been or ever will be non-communicative.