Saturday, June 26: Update

Tiffany and I are handling some of the emotional aspects in different ways. We’re supporting each other through our various coping mechanisms and it’s stretching us in ways we hadn’t foreseen. We are both missing Claire: we are shocked that it has been nearly a month and heartbroken that it has been that long since we saw Claire smile and heard her voice. Tiffany has been looking at pictures of Claire and listening to her voice on our digital recorder as comfort. It makes her feel close to Claire again especially on nights like tonight when we’re both away.

I can’t look at the pictures or listen to recordings of her. I was despairing a couple nights ago while I was staying with Claire because I was having a hard time remembering her voice. I was reliving a week prior when she had dressed in her princess dress and asked me to be her prince. She told me to stand at one side of the room and to say “Do you take this woman to be your princess?” What broke me was that I couldn’t hear my princess’s voice in my mind. I could only hear her as she is now. My heart hurt.

Tiffany encouraged me to listen to the digital recording. My reservation goes deeper than just the suffering from missing her. I want to hear her voice not as it was but from her mouth. I am working against the tendency to think about what was and focus on what will be. I don’t want to betray my hope that Claire will again have the same voice and personality. But this is not Tiffany’s path.

So I joined Tiffany on her path tonight. Tiffany needed to see Claire and grabbed Claire’s album. I stood beside her and cried with her while we looked through her most recent birthday pictures. We hurt together, some of the pain the same, some different, and we remembered Claire as she was prior to that day.

While we have some differences, we have the same goals and desires. Tiffany and I may not understand each other sometimes, but we do support and respect each other’s needs and mechanisms to meet those needs. While it was hard for me to look at the pictures, it was good to be emotional together. It feels like it has been a long time since we last had the opportunity.

These thoughts and events followed a good day for Claire and me. I was the overnight caregiver for Claire last night and we had autonomy until 3:30 PM CDT today. Claire had a more predictable night of sleep last night and was able to collect about 10 hours over the course of it. Between getting up to change her diaper, her feed line and reposition her, I was still able to grab about 7 hours of sleep. We were both sufficiently rested for today. We started the day with an hour and a half of physical and occupational therapy directed by yours truly. Claire took a nap in her bean bag chair in preparation for the day’s biggest event: I took Claire outside for he first time since this began.

Claire’s previous wheelchair ride attempts have ended with increased overall agitation and contempt. The movement, light, sights and sounds were unwelcome and overwhelming. Today was different. Claire was much more subdued and seemed to enjoy the ride. We spent 15 minutes in the lovely Dallas heat, grabbing a little sun and letting Claire feel the breeze against her face. I was very encouraged by her agitation level during the trip: it was almost non-existent.

It was nice to get Claire outside. She has always loved exploring outside. It just felt more healthy to be out and about. I enjoyed watching her open her eyes, pupils contract and eyes search the sky. It did both of us good.

Claire spent more time out of her bed today than in it. We are making a concerted effort to make her days more active, so we can work on recovery and make sure she is sleeping through the nights instead of the days.

Aside from a somber evening, I enjoyed my day with Claire. I enjoyed seeing her agitation levels moderate. I am hopeful that a productive week is ahead.

My apologies for he belated update. Thank you for staying with us, prayers, hopes and all.

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