Monday, January 13, 2014

a new year

It is rare that I would labour over each and every sentence. I would sit beside James' hospital bed, watch the slow rise and fall of his chest, and write to the rhythms and sounds of the surrounding machines. Now? I sit down to write, and I am lost. There are not the right words. There are not enough words.

Last month, I wrote about a hard month for our transplant and CF communities. The following weeks were also very difficult. We learned of several deaths of young and brave individuals. Many more are facing complications of chronic rejection, kidney and liver failure, and the devastation of post-transplant lymphoma disease. It is impossible to make sense of it all. It doesn't seem right. It doesn't seem fair. It always seems to come with a genuine disbelief.

We feel the sadness deep in our marrow. We understand the realities of these diseases, but I think there is still some level of denial. We hold onto hope for a healthy future, for each and every one of us, and it is hard to comprehend the passing of these incredible individuals. We witness the strength and fight of our friends, and feel complete awe for their bravery and courage in the face of life-threatening circumstances. It can feel insurmountable. We are never far from these truths. We have been there. We never want to go back. 

We continue to hold each other close. We fill our lives with love and laughter. We reflect on each day as an incredible gift. We are very aware of our fortune. We carry that gratitude with us each and every day.

We had a very joyous holiday season. We were able to celebrate with both of our families, on Salt Spring Island, and here, in Victoria. (I have yet to upload photographs, but it is on my ever-growing list). We had the absolute delight of welcoming a little one into our family. It was an affirmation of life. We ache to be parents, but for now, James and I are proud to be Aunt and Uncle to our little niece. We look forward to a year of new beginnings.

James has a lot of tests and appointments in the coming weeks. We hope to be able to complete his 6 months post-transplant assessment. (It is now nearly 2 months overdue). We do not anticipate significant findings. James presents as a stable, albeit rare episodes of nausea and gastrointestinal distress. We are being very cautious about infection control with the flu season in full force. James and I have both been vaccinated against the flu, but that does not seem to ease the concern. We understand the severity of infection in individuals with immunosuppression. We take few risks. 

What else? James and I are both working hard to get back into physical shape. The rainy weather is not a deterrent. It feels wonderful to be able to engage our bodies in a healthy and productive manner. I cannot believe the difference after spending a year with little to no activity. James was essentially bed-ridden, and I was by his side for ten to twelve hours every single day. I ride my bicycle with new found ease, and James is able to do work around the house. (We are mid-way through some very necessary renovations to make the house safe and liveable again). 

We do a lot of cooking (and of course, eating). James was finally able to gain a few pounds over the last month. We hope that this will be the start of an upward trend. We are working our way through our favourite cookbooks, and James is learning to enjoy the experience of eating again. It has taken a long time, to say the least. Eating has always been very mechanical for him. 

That is all for now. I am heading out to work. I have a causal position working with children with Autism Spectrum Disorders, and other special needs and developmental disabilities. I absolutely love being back at work. 

As always, love, love, love!


  1. Hi- some questions about your journey with CF. Please enail me at mtrucillo(at)recallcenter(dot)com. Thanks!

  2. So great to see the photos of James & food on FB!
    Miss you both desperately...we are here on the other coast managing day to day. C has had a great 10 months, then developed a cold, low WC, and is back on Valcyte because of a viral awakening. Sleeping lots but has been more wakeful in the past 5 days (hard to sleep with that whip crackling around him). We are also very cautious of where we go at this time of year.
    It is still a miraculous journey...coming thru the other side of trauma and trying to figure out who we are - for trauma changes you and your perspective. We've been incredibly busy since returning home and although I have the desire to post about all these wonderful events...I too, find no words will come, my thoughts scatter when I sit down to write. Just giving it some time for now...
    Love, love, love & hugs to the most wonderful aunt & uncle a niece could ever have!