Thursday, October 17, 2013

home sweet home

I am out of excuses. I can no longer avoid an update. I suppose I am developing my procrastination skills in preparation for graduate school. In truth, I rarely turn on my computer, and I do not feel an immediate or cathartic need to write. Then again, I think it is important to document our process and journey through the worlds of Cystic Fibrosis and transplant. These memories are a precious reminder of the precarious nature of our lives. It is through this perspective that James and I are able to let go of sources of stress, and focus on the happiness of, well, being alive (and being alive together). There was a period of time that I wasn't certain I would ever be able to feel a form of happiness again. We are so relieved to be back into the normalcy of our daily lives.

I did not realize that I have yet to post from home. (My sincere apologies). James and I are back in Victoria. We have been home for several weeks. We are taking is slow, taking deep breaths, and taking it all in. We are filled with complete gratitude for each and every day together, along with our loving and supportive community of friends and family, and of course, James' organ donor, whom without, none of this would be possible. 

We spend a lot of time in nature (as the weather allows), and a lot of time enjoying the freedoms and luxuries of leisure time. We do a lot of cooking and baking together, and are slowly working our way through the collection of cookbooks at the local library. We are still in the mist of nesting in our little home. There is a lot of cleaning, renovation, and organization to be done, all in time, and without pressure. We are also developing a taste for thrift shopping; a habit that cannot be supported on a disability assistance. I will be returning to work on a casual basis with much excitement and enthusiasm. 

My graduate degree has been deferred for September 2014, and I cannot begin in January without re-application. I still hope to connect with my graduate supervisor in the next few weeks, and start to build that relationship. James is also looking at the possibility of non-degree credit courses through correspondence or online courses at the University of Victoria.

Speaking of James, I continue to feel wonder and awe for his courage and strength, and of course, his incredible drive and passion for life. James' recovery has been nothing short of miraculous. I have no other words. Aside from the day-to-day realities of Cystic Fibrosis, and of transplant immunosuppression, James is almost as healthy as after his initial transplant. He has re-gained his independence, and through pulmonary rehabilitation, James is continuously building strength and endurance. We spend very little time in hospitals, and at doctor's appointments, and I don't suspect that will change in the near future. We feel very blessed.

Here are an insane number of photographs from the last few weeks at home:

o, and an article from the Times Colonst on October 14, 2013!


  1. Dear Adena ~ Thank you for this! Its so wonderful to know that you and James have now stepped back into the land of the living and breathing, on the outside! Hospitals are wonderful for the resources and services they provide when we need them, but it sure is good to have them at your back.
    Like you I am delinquent with the blogging...there is so much unpacking to do when you get home, and I don't mean the boxes and suitcases, although that takes time as well. There is the peeling back of layers of the mental and emotional stress you've been living under while on this journey to new life (Thank You Donors!). Carefully examining, and sometimes re-experiencing, the strong emotions of loss, grief, fear, and finally joy at a new beginning...then fear of what might happen. I found myself thinking that I might jinx our good fortune if I blabbed too much about it. I would percolate a blog in my mind, then cautiously approach the computer to put digits to keys only to discover there was something else that needed my immediate attention, so I should blog "later".
    Carman has been doing so well, I keep telling him that his only limitations are the ones he sets for himself, and the fatigue that follows a few energetic days! He has started to play some badminton, with a goal of playing at the Canadian Transplant Games (in Moncton, NB) next July, both in singles and with Jess in doubles. His plan at this point is to play 2 evenings a week at the Uni Rec Centre and as well he will go there 3-4 days to do his physio workouts. This is The Plan anyway - as yet he hasn't committed the plan to a routine...
    We are so thrilled for both you and James, enjoy!
    Love, love, love

    1. I am hoping that the healing process continues at home.I understand that there is so much to be dealt with and it all takes time. I continue to check your blog for updates.I realize it is probably difficult to find the time to write now as life if very busy.I /we have followed you and James from the very worst of times to the present.We have prayed for you and given you all the encouragement that one could.Then suddenly everything stops....not a word...I feel certain that people ( including myself) would like to know that things continue to go well for the two of you.Perhaps even once a month you could write even one line to let us know that you are both well....I continue to wish the best to both of you.

    2. Anonymous, Thank you for your message. We are so grateful for all the support and encouragement. We feel the love! We fully intend to continue to update on a monthly basis. We have not updated for November, because James will be at his 6 months post-transplant anniversary at the end of the month. We thought it would be most appropriate to update then. We will update soon!