James has been on the tracheostomy mask for the last twenty four hours. This is a major accomplishment and step forward towards weaning from the ventilator. James could potentially be off the ventilator by the end of the week. He would still be dependent on ECMO (artificial lung), but it would greatly improve his quality of life. He would be able to eat and drink again (o, I cannot even begin to describe James' pleads of thirst). He would be more mobile, and better able to participate in physiotherapy. All of this is essential to optimize his health for transplant.
It is strange to write of these accomplishments. These improvements are all relative to the severity of the disease, and I am wary to paint a false projection of future possibilities. There is a constant shadow of truth: James is on the edge of survival. He will not survive without a transplant. It should not negate these steps forwards, but I am afraid to dream.
That being said, I still hold onto some parts of our dreams. I wrote a post many months ago about imagining a different future. We have come so far from then, and in some ways, I am actually more hopeful. I don't feel as though I have to let go of all of our dreams. With that, I am also in a very different space of acceptance.
I can see James and I moving forward post-transplant. I long to go on long bicycle rides, stopping to pick wild blackberries, and watch the neighbourhood deer forage for greens in our gardens. I can't wait to sleep under the stars again, while pseudo-camping on James' family farm, and wake to the sounds of peacocks screeching for no apparent reason other than the start of a new day. I want to cuddle in front of our fireplace while reading out poetry to one another and surrounded by our feline friends.
I just want to live. I just want to experience being in the world together (separate from a revolving hospital door). I suppose that is a lot to ask for.
These photos were taken by a dear friend, Heather Armstrong, on the day before James and I left Victoria. I will continue to share more in the coming days:
Hi Adena and James. I am a high school friend of Sarah Taylor's. You both continue to amaze me with your appreciation of the myriad tiny miracles of each day. Most of us are to busy or oblivious to notice them but when each heartbeat is a blessing our perceptions are keener. I send you love and send to the universe your need. As a teacher in the midst of our mental health week I want to thank you for the amazing gift of perspective. I know we have never met but you are amazing and I wanted you to know.May your gift come at the best possible moment and may your god hold you safe in the palm of her hand until it does.♡ Wendy Jackman
ReplyDeleteWendy,
DeleteThis was wonderful to read. Adena writes so beautifully, and yes, captures precious positive moments in amongst the brutal reality of James' condition. She is a special person, and these two are incredibly important to me.
Adena and James - rock on.
Sarah