James is ever so patiently tolerating the hospital experience. The long nights in hospital can lend themselves to some negative thoughts and feelings, but James is always sunshine in the morning. We both tend to leave our fears to late at night. It seems that loneliness begs the attention of our deepest emotions and allows sadness to make an appearance. We can spare a few tears here and there, but James and I take these moments as reminders to spend the days in fun and laughter.
I am learning a lot about acceptance. It allows me to move forward with a lot more confidence in the present and for the future. It is almost a form of faith. We do not allow our fears to control our decisions. We move forward together with a focus on everything that is within our control. We are doing everything right, both for ourselves, and for each other; by ourselves and together.
I write a lot about gratitude. We find gratitude for the perspective of our circumstance, rather than for the limitations of our circumstance. We do not take for granted our time together. We can be honest with ourselves about the realities of transplant, and still close our eyes at night without regrets. We find value in the important aspects of our lives. I fall more and more in love with James each and every day. He wrote me a card with a similar profession. There is something special here to protect.
As for a health update, James started total parenteral nutrition (TPN) last night for supplemental nutrition through his portacath. There is a relief in knowing that James' nutritional needs are being met. This is currently a short-term solution for during hospitalizations. James may not be able to obtain coverage for extended care at home, because of the cross-province health care agreement that only allows for out of province acute care, rather than in home care (or chronic care). This is frustrating for a number of different reasons, but for the most part, I feel it is essential to optimize James' health status (including nutrition status) for transplant. This should be a shared goal with the Transplant Team, but of course, I also understand that there are limited available health resources (and it is certainly not ideal for James to remain in hospital). The fact that these are unprecedented circumstances doesn't negate the need to address the issues. We will work with the social workers on finding a solution prior to discharge. I will never be done advocating for James.
James also went to the Transplant Gym for physiotherapy in the afternoon (and showed off his fancy shmancy IV pole). He completely amazes me with his ability to push through the discomforts of being in hospital, and continue towards the goal of transplant. He did a series of stretches and strength exercises, along with ten minutes of cardiovascular exercise on a stationary bicycle. He was exhausted (and nursing a headache), but still managed to get through the basic workout. That's some serious determination. Let's also take into consideration the fact that James has been in a hospital bed since Christmas. I'm insanely proud of him. Can you tell?
Adina, I'm so proud of you both - you have given so much of yourselves, probably without even knowing it. You show courage everyday, in each little thing you do. I even think it was courage that led you to peer thru the window of the social room and definitely courage that led you to open the door and ask "Can I come in?" on New Year's Eve. And we're so glad you did, and then to see James up for coming to join us as well!
ReplyDeleteThe 'man on the street' has no idea of the challenges that leap over him and land in someone else's lap and that's likely by design. your courage and wisdom enrich the lives of those around you - don't ever stop being you - together and as individuals. Your friend thru the things that life throws at you - Pamela
Thank you, Pamela. I don't feel very courageous, but I'm toughing it out. I'm really grateful for your friendship. It makes the difficult days a lot easier to know that I am not alone in all this.
DeleteAdena,
DeleteI was so happy to be formally introduced to both you and James on New Years eve. I had seen you both in physio a few times, but never took the time to introduce myself...I apologize!!! I actually remember the very first time that I saw you guys...you were in physio and James was doing his squats and you were mirroring him and I remember clear as day, you said to him "I am your motivation!" It touched me at that moment and touches me even more now, knowing you guys and your story!! Guess what....you are his motivation and inspiration...you give him reason to fight and to laugh and smile through the pain....that is true love!!! :) Please don't say that you are not courageous because from just reading your blog and meeting you for a few minutes, I can see the courage, strength and love pouring out of you both!!!!
Pamela is very right, it is by design (sadly) that these types of challenges are avoided by others and hit some head on... We are all tested and dealt what we can handle... However, that being said, sometimes enough is enough!!
Please know that I am here for you... You can message me on facebook or text me (I will message you my digits) any time you like... This is not an easy journey and it is always a little easier to have someone to talk to... Trust me, I know!! :)
Keep your head up and know that my thoughts and prays are with you guys always!!
Kristy (fellow pre-transplantee and New Years eve buddy)
xoxo! Where would we be without the love and kindness of our extended transplant family? Thank you, Kristy. We are so grateful to know you!
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