Sunday, October 25, 2009


I've been thinking all week of the night Henry almost died and the night before that when he turned blue in my arms and I almost lost myself. I meant to write about those earlier in the week, but each night it got late and Kathleen woke up and I eventually quit and went to bed. Tonight, I sat down to write about the Buddy Walk we did today and about learning Henry had Down syndrome, and I had just started when Kathleen started crying. I went up into her dark room and reached into the crib and the top of her head was sticky and wet. My first thought was blood, but no, vomit.

I got her cleaned up—bath, hair washed, fresh diaper, clean pjs, new sleep sack—and then went up to tackle the crib. While I was wrestling the sheets on to the crib mattress, Henry's last night came to me and is sitting with me still. It is not a night I like to remember. In fact, it is one of the few events of Henry's life that I did not relive last year.

Sitting in Kathleen's room, I could see the feeding pump on its pole by one end of the crib, hear the oxygen machine, smell the diarrhea, for that was Henry's problem that night. Over and over and over we changed him and the sheets and finally gave up and left him just in a diaper. I was on the phone to Children's and our pediatrician. I hear the panic, the rising hysteria, in my voice.

I was so scared to take him to the ER and expose him to all those germs. I was so scared to take him to a hospital less than 48 hours after we left one for fear they would take him back.

He had a fever that night. We gave him Tylenol, maybe ibuprofen too. I worried about hydration with him not keeping anything in. I didn't worry so much about the fever. This is the detail I focus in on now. I knew— had seen, time and again—how even a low fever affected Henry's heart rate, and once his heart rate went up, his heart didn't pump all that effectively and pressure built up and he started into a pulmonary hypertensive cycle. I had been vigilant about fever in the hospital. I had worried that outside people would pooh-pooh me when I told them he had a low-grade fever. I didn't imagine I'd be the one to ignore the fever.

I was so tired that night. Three months in the hospital, three months of dramatic ups and downs daily, or within the day, had taken their toll. Sleeping on upright in a chair or on the floor the last night in the hospital with just sheet hadn't helped. A night at home with meds every few hours hadn't helped either. I was delirious with exhaustion.

We did not take him to the hospital that night, but to our pediatrician the next day and from there to the hospital, but that's a different story, or a different piece of it, one I don't have energy to tackle tonight. I have a baby with a stomach bug, who is sleeping right now but may wake up any time.

It's okay, I told her, but realized she doesn't feel at all okay right now.
So I amended to, You'll be okay.
And then for me: You have to be okay.
And I mostly believe it, but tonight the shadows in her room were dark and was in a place I didn't want to be. Her warm body, so big!, snuggled against me brought me back to the now, but those memories I don't want persist in lingering.


  1. So painful to go back and remember, Sara. I'm thinking of you and hoping Kathleen is ok.
    Remembering baby Henry with love.

  2. Kathleen slept the rest of the night in her crib—no more throwing up—then curled up in bed with me from 5-7 A.M. and woke up her smily, giggly self. The only thing off was a refusal to take more than a few bites of breakfast. Daylight and bright sunshine and a sunshiny baby seemed to have pushed the ghosts out of her room for now.

  3. I do this too, the why why why. I'm sorry.

  4. So hard to revisit all of this...glad to hear Kathleen is on the mend.

  5. Sara, you were one of the first people in this community to reach out to me, and you encouraged me by telling me it's important to tell our stories. I'm here, just sitting with you, ready to listen to any part of your story you need to tell. I'm so sorry for the ghosts and the parts of the story that are so hard to tell and glad that things looked brighter in the morning and Kathleen is feeling better.

  6. Oh, Sara, what hard memories to sit with. Thinking of you and Henry. And I'm so glad Kathleen is feeling better.

  7. I'm so sorry. It is really hard when the memories just come flooding back. What a hard night you went through with your Henry. With all those hard months before.

    Love to you. I'm glad that Kathleen is alright. xo