Monday, June 28: Update

My paranoia has increased a bit over the last four weeks. When I stay at OCH with Claire, I have to get up from bed to check if she’s breathing. I used to do the same thing when she was newborn. I’d make sure nothing could block her air supply. I’d check to see if she was covered up and warm. I’d check her diaper. I was always careful not to get too close or fuss with her too much, fearful of waking our sleeping baby. So I’d leave the lights out and dip my head close to hers so I could hear her soft breaths. So I’ve done this before. But it’s not the same.

I had no reason to think that Claire’s mechanical structure wasn’t operating properly when she was a baby. I was mindful of the external threats to newborns and guarded accordingly. She had her regular check ups and was always given a clean bill of health. My frame of reference changed four weeks ago. Now I am firmly aware that her once healthy body has been compromised. I am thankful that she is stable, and I am more paranoid about slight changes. While at Medical City, I would watch her oxygen saturation and heart monitor late into the night, convincing myself that  if it stayed constant for an extended period of time I’d be able to go to sleep without worry. I do it now with her breathing.

My paranoia does not stop with Claire. I was collecting our mail last week which is adjacent to the community pool where this began. I heard kids playing but the noises were ambiguous to my mind: were the sounds safe or distressed? I had to see them to put my mind at ease. Therein lies my struggle. My mind needs to be convinced through sight that everything is safe; however, my mind is tricking me into thinking that because everything is safe now, when I see it, it will continue to be safe for the foreseeable future. I’m tricking myself so I can sleep at night.

This is an aspect of what has been so world shattering to me and Tiffany. We loved our lives. We’d only had brushes with suffering until four weeks ago. We’d never met it head on. So we lived our lives as if the present, what we could see then, would continue forever. We’d never had to face our own mortality. We couldn’t fathom the far worse scenario of our kids’ mortality. So not only do we find ourselves grieving for Claire not being with us right now, we also miss the semi-charmed life we had. We don’t know how to live this one. We don’t know how to suffer. And until I figure it out, I’ll continue to recapture those little pieces of control to get me through the next few hours by checking on Claire while she sleeps.

Thank goodness she’s sleeping now. It took a while and my arm is tired from patting her back, but she’s sleeping soundly. I can hear her breathing – which keeps me from getting up to check – and she’s been going strong for almost an hour. We’ve got the beginnings of a system to make it through the nights and we hope it diminishes volatility through the nights. It will help her stay strong for her therapy sessions.

She needs her strength for the sessions. She did well today. The occupational therapist was very pleased with Claire’s progress and range of motion today. Claire also got to try laying on her belly today. A wedge aided her and the therapist was testing her neck strength. She gently told Claire to lift her head. Both Tiffany and I were excited when her neck muscles tensed and her head raised slightly.

The physical therapist exercised her neck more. Claire was challenged to hold her head upright while being held vertically. She did. The therapist then tilted Claire to her left so her center of gravity was off. He asked Claire to hold her head up again. She did. He tilted Claire to her left and told her to hold her head. She did. At center again, Claire dropped her chin to her chest for a rest from the energy expenditure. The therapist told her to lift her head up. She did. We’d been seeing more muscle control with her head in bits and pieces. This was the most glaring example. We enjoyed watching and encouraging Claire.

We found that Claire also responds to different message packages. When you nicely ask Claire to do something in a sweet voice, she tends to ignore it. If you use a standard voice and make it a command instead of a request, she tends to make an effort. It also helps to have a male voice: she’s responding to requests that originate from male doctors (and dad) more than female. Read into it what you will.

Claire had a number of visitors today. Papa, Nana, Autumn, Heidi, Bryanna and Brian all joined Tiffany and I at OCH. The girls were excited to see Claire again after a few days of missing her. Heidi talked to Claire first and reassured her that Claire would get better. Autumn soothed Claire by rubbing her arms and back. Claire responds very well to both of them. It helps us to see them all together.

Claire also got a visit from another near-drowning mother, Jeanne Damoff. When we first arrived at OCH, one of the nurses encouraged us and told us about a book we could read that is available in the OCH library. She couldn’t recall the title but would get back to us. She came back a couple of days later and my mom was reading the book “Parting the Waters.” The nurse saw it and commented, “I’m glad you found it!” We hadn’t found it. Jeanne had sent it to us. It’s her family’s story.

Jeanne shared pieces of her story with us today. She was generous with her time (thank you Luke and Sarah for sharing her with us) and her encouragement. She was our gift today. We hope to see her soon and meet the rest of her family.

Thank you as always for the prayer, support and hopes.