Thoughts from an Armchair Caregiver

05.12.2012

It is humbling to sit, wait and watch someone you love recover from a major surgery. In the beginning a smile, wince, frown and expression of anguish are welcome bits of information that help in our efforts to understand her needs. Everyday we try to facilitate and provide the most compassionate care possible – the nurses listen well and do just that, and we are grateful.

Jesse and I sit for hours in the ICU with her, he more than I, and it reminds me that in every moment we are witnesses to courage and resilience. And I get the added benefit of experiencing his love for her as he watches her breathe, checks the monitors and questions any subtle changes in her body. I like getting to know Jesse in this way. He is a good man with a nurturing strength. Practical and patient. It is a joy to watch him love her.

We are experiencing life in its most fragile state. While sitting here, we are available to do whatever is needed. Most of the time nothing is necessary, so we wait, read, apply chapstick to her lips, wash her face, adjust a pillow, act as a voice to request additional medical care or we simply smile, hold her hand, and hold space while she does all of the real work healing her body. Jesse’s responsibly could be seen as heavy as he has a deeper understanding of the nurses’ and doctors’ comments and what the bells and whistles of the equipment mean – but nothing seems to phase him. At times I am just here trying to be patient with myself, trying to forgive the maker of this disease and visualize her health and long life.

Sam is doing well: Tubes are being removed daily, she is sitting up and now going for occasional walks around the ward. So, she is making progress and is on schedule with her recovery. No surprises so far and this is good. She is now talking a bit more, has little throat pain, no more nausea but a little upper chest pain which is being well managed by medications. All normal signs. We do get smiles, thumbs up and random peek-a-boos through her sleepy eyes. She apologized today for not being more entertaining which made me laugh – then entertained! This is good and she is getting better!

I think of the 100+ people following this blog, waiting for news, wanting to help. I am aware of your love for Sam, the distance and the powerlessness that I would feel if I was so far away from the day-to-day knowing. Many of you have expressed that struggle. I am appreciative of the space that Cindy and Siri have provided by creating his website so that we have a common platform to share and come together in our encouragement and joy at all of her successes.

I wonder what it might be like for Sam’s mother, Jennifer, to sit and wait at home in Vancouver and honor her daughter’s request to stay there until she is ready to call in the big love and care from Mum. As for Dad, Arnold, I would imagine it is similar for you too. We will do a better job of calling you regularly with updates.

Half the time I think I want to respond to texts, emails and calls but I don’t. There is no other reason than I never know quite what to say. It is hard to express the excitement when you are at peace without pain or relief that everyone says she looks so good or how humbling it is when she says thank you for brushing her hair. Your emails and blog responses help pass the time and bring a smile to my face and calmness in my heart. I am excited for her to read all of your comments. This blog is the journal of this journey – whenever she is in doubt she can review it all.

As always, Jesse will give you the medical updates. It is a relief that he is able to translate, troubleshoot and deeply understand what is happening to her body. What I can share with you is my belief that her spirit is strong, that she has done incredible work over the past 5 months and she has pressed up against her real life in the most unimaginable ways and broken through. Her breaths with one lung will be deeper than what I will ever take with my two.

When I sit in her room I try to bring as much as I can from each of you, as this network of light and love is a force as powerful as Samantha herself. I have read and watched Sam absorb all of your intentions, prayers and offerings as they have played such a wonderful role in the expansiveness of her spirit and health. I will do my best to bring your loving presence to her everyday.

Ten years ago my mother told me that this process of care awakens humility and meaning and she called it sacred. She has been a nurse all her life so she should know, and she is right.

I know Sam will send her own update soon. I am really looking forward to that.

With love,
Alison