Henry's Fever - a found journal entry from January 25th, 2015
Us ~ January 2014 (a year before writing this post)
1.25.2015
Henry has a fever. After spending most of the afternoon curled up on the couch, a tiny ball underneath an old quilt I bought this summer at a garage sale down the street, he is finally up and eating. He sits straight up in his little chair - not quite a high chair, but almost, as if there were a rod pierced down the center of his spine.
I have come to almost enjoy when the children are feverish. There is something so ‘other worldly’ about their behavior. It’s as if they are in some kind of limbo between this and another parallel universe. They are shadows of themselves. Alternate versions. He is in a waking dream and I am one of his characters.
His head pops up, “I have to go to the bathroom!” and he jumps up and quickly heads to the door.
“Do you have to go pee or poop?” I ask.
He pauses at the doorway, “Um…You should say, ‘One or Two’”.
“Okay”, I agree, “Do you have to go One or Two?”
“Which one is One?” he asks.
“Pee”, I say.
“Okay,” thinking, thinking, “I have to go Poop.”
And he’s off running, again.
Now he’s in the bathtub. When I told him there wouldn’t be any computer time today, he asked if we’d be doing anything fun before nighttime. I said that because he was sick and there is school tomorrow, we’d just stay home, relax, maybe read or play. He decided a bath sounded more exciting.
“Mommy. What month is it?”
“January.”
“Is it the last day?”
“I don’t think so.”
“Then what’s the date?”
“I don’t know. There’s a calendar you can look at out here.”
“Mommy, can I be done?” He’s been in less than 4 minutes.
“Okay.”
Henry was born on September 3rd, 2004. He was born with a rare syndrome later clinically diagnosed as Noonan’s Syndrome. It presents somewhat like Down’s - only it’s not at all the same. I just usually say this because it implies enough to typically quiet the questions. Here’s what I know:
He will have heart problems (open heart surgery in 2007 - almost didn’t recover).
Feeding issues (feeding tube surgically implanted at 3months of age, removed just before turning 2 - wouldn’t close on its own, had to have another procedure to surgically close wound).
Cognitive delay
Speech delay
Failure to thrive - he is 10 and wears size 6 clothes. He hasn’t gained weight in over a year.
Writing this down hurts. I find myself tearing up and holding back from crying. My throat feels swollen and I don’t know why I started writing this. I wanted it to be light and funny - because sometimes it is. Sometimes we have these crazy conversations and I can’t believe the geneticists told us he wouldn’t be able to communicate. He does these silly moves or expressions and I remember that they said he wouldn’t walk.
Henry spent the first month of his life attached to machines and wires and we didn’t think he’d be able to do much of anything. When he was almost a month old, I had to pass an infant CPR exam in order to take him home from the hospital. I was in shock and suffering from such grief that I couldn’t hold on to any information. I remember the clinicians looking at me, saying things slowly, I was nodding and answering back, but it was as if I was watching myself from a few feet away. Trying desperately to give them the right answers so we could leave. I was in a blackout.
I know now that what I was suffering from was PTSD. All of the beeping of the machines, the brightness of the hospital lights, the 3min required scrub down of our hands to elbows just to see our little baby boy - and all of this while we have another child already. While we have a brand new restaurant we’d just opened. While we have friends and family asking us, quietly and with averted eyes, if we’re okay.
No. We’re not okay. We won’t ever be okay again. Our marriage will fail and our 4year old daughter will suffer. We will declare bankruptcy, lose our restaurant, and have to move. We will spend the next four years trying to hold ‘us’ together, but we won’t succeed. My husband will prefer to work too late and I will become bitter and resentful. We will have to work with countless therapists, doctors, social workers, and clinicians. We will have to stay poor to receive health insurance and we will be too sad and tired to hold each other. Sometimes we will feel more like comrades during wartime than the lovers we started out as. We will eventually divorce and no longer know how to speak kindly to each other. We will only know the hurt, the sorrow and the loss. Every time we think of each other, we will remember the restaurant we’d only just opened up, all the work and time and love we’d poured into it - and how in what felt like a flash - it was all gone. Swallowed up with the birth of our little baby boy.
*I just found this journal entry ~ it was stashed in the wrong folder on my computer.
