Mixed Emotions
I often find it hard to share positive news with other people. Sometimes, positive news can be hard to come by, and when we are finally given positive news, it’s often not the only thing that is heard. There’s so much more to it. For example, we have finally been told that we are ready to meet the transplant team and start the work up for Dylan! Don’t get me wrong, this is very positive news and I’m thrilled. At the same time, I have a list of many emotions and thoughts running through my head at the same time.
Depression - Although I’ve accepted that Dylan is in kidney failure and will need a transplant, it’s still upsetting that my one year old son is in kidney failure on dialysis and needing a transplant. He has had more surgeries than either Brian or I have had in our life and a transplant is a major one! It’s hard watching your child struggle in the ways that we have.
Excitement - I am so excited to be meeting the transplant team. This is our first meeting with them and we know we are still a bit away from actual transplant time. Although, this is the goal we have been trying to get to since Dylan started dialysis. And we made it!
Overwhelming - When you get word that it’s time to meet the transplant team, there is a giant list of bloodwork, scans and appointments that need to be done as part of the intake and follow up or the team to be able to assess properly. We were told this can usually be done in 4-8 months and is another mental overload of information to try and ensure nothing is forgotten about or missed that could delay a transplant.
Frustration - Even though we are finally getting to meet the team, I know Dylan is still not big enough to receive a transplant and that we will still be waiting a while. Meeting a goal but not getting the goal, yet, is frustrating.
Concern - So many unanswered questions. What if Dylan is a hard match and we have difficulties finding a donor? What if something else happens with his health that delays his transplant? What if there’s complications? So many “what if” questions.
Stress - This is the main one. This is a big surgery with a ton of appointments leading up to it, as well as, a ton of appointments afterwards. Everything about your child undergoing a transplant is stressful.
On top of all the emotions, my mind runs wild with questions that just contribute to all of the different emotions. Can Brian or I donate a kidney? What would things be like if one of us donated a kidney? What will life be like for Dylan after a kidney transplant? What if Dylan rejects the kidney? What if something happens during the surgery? Do we really need to relocate to Vancouver for 3 months post-transplant? How many medications will Dylan be on post transplant? Will he finally be able to eat orally instead of being g-tube fed after transplant? Will he be able to live a relatively normal life afterward?
When I hear positive news, while I do feel the excitement, there are always many other emotions and thoughts that come with it. On one hand, I have found this has helped me manage my expectations which has made it easier for when something doesn’t go quite as planned. On the other hand, it’s sometimes hard to train my brain to hear that we have been given positive news. I also find it hard to share this positive news with people because of all these other things that run through my head. They are things I often don’t want to share. I don’t want people to ask questions that may cause my brain to go on a whole different downward spiral of mixed emotions. I don’t want people to know about all the issues that may arise. I don’t want to explain the numerous different paths things go down and all the concerns and questions each path may bring. A big part of me feels that if I don’t put the concerns out there in the world then they won’t happen. The excitement of positive news is often overshadowed by the many other emotions and endless “what if” thoughts.
