Tuesday, September 11, 2012

gratitude and finding strength

[As with the previous entry, I wrote this in the evening, but I was unable to post, because I only have internet access at the hospital].

It seems as though I may be establishing a routine that actually involves writing on a regular basis. (It also seems to be that lack of internet access could be a great source of motivation to write). I love to write, and I wrote in journals throughout my adolescence, but I would eventually become too critical or judgmental of my writing abilities to continue for any length of time. (Perfectionism was a great barrier to many of my pursuits). My online blogs have almost always been private to protect the personal nature of my ramblings, but I am starting to understand the strength and support that can build within online communities.

James and I launched a fundraising website a few days ago. We are so deeply touched and overwhelmed by the incredible generosity of friends, family, and anonymous donors. It is impossible to even begin to articulate our gratitude. It is reminiscent of writing James’ donor letter to the family of his organ donor. There were not enough words. There are not enough words.

I was weary of asking for help with the knowledge that so many of us are already struggling with student debt, month-to-month daily living expenses, and so forth. We are so grateful for access to universal health care in Canada. We know that our struggles pale in comparison to a large percentage of the population. We want to be able to give back. We will find a way to give back.

We are also very grateful for support and encouragement during these extended hospital stays that easily lend themselves to disappointment and frustration. James and I feel very displaced in our own lives. We lack a certain sense of control over our lives. There are a lot of uncertainties. We move through our days from one moment to the next with the knowledge that we cannot take our time together for granted. There are days that it is harder to laugh (and easier to cry), but James and I always find comfort and security in each other. We both agree: We would do this over and over (and over) again as long as we had each other to hold. The strength of our relationship continues to build irrespective of the challenges that we face. This is a love that extends well beyond the depths of fear and sadness. We have been through this before. We can do it again.

As for a health status update, James was sleeping when I left the hospital tonight. He was comfortable and calm, but I was reluctant to leave. He had a dystonic reaction to his fourth dose of the anti-lymphocyte globulin (thymoglobulin), but it resolved with a short break from the treatment, followed by a dilution and slowed delivery rate. I left him with food for the evening, and stumbled down the hallway in my own state of exhaustion. It is hard to let go of his hand and return to this empty apartment. I eat dinner in silence, turn on my computer to write, and crawl into bed with the hopes of even a few hours of sleep. Ophelia doesn’t leave my side.

Here we are in the morning (with dark circles to compliment our eyes), cuddling up, and waiting for the doctor:

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