Addison had her transplant nine years ago when she was just three weeks old and has been with COTS for the past eight years. Her mother, Elaine, shared that her biggest concerns when she and her husband first found out that Addison needed a transplant was: Will she survive? How long will she have? What kind of life will she have? There was this contrast between the life that Elaine and her husband, Aaron imagined and this new reality that they were unexpectedly presented with. There was no time for them to get used to the idea, given that Addison’s heart was failing and she needed a transplant immediately. The main emotions that Elaine described that her and Aaron felt during this time were devastation, shock, horrible sadness, denial, anger, and guilt. Elaine questioned whether she had done something while she was pregnant that could have harmed Addison.
However, Addison is doing wonderful now and aside from usual checkups and bloodwork, her childhood is quite normal despite the first couple of years post-transplant being bumpy.
What advice or insight does Elaine have for other families?
There was a point where her and Aaron realized that there was no point in them being sad or depressed, and they began to realize that the best thing that they could do is be Addison’s cheerleader. It was Addison who was having to do all of the hard work, so it was their role to be supportive and positive, and not bring their fears into the room. Elaine shared that of course it is hard to be upbeat all the time, but she believes that it is important not to show sadness in front of your child and to try to focus on what you can control. She also mentioned that listening to your child is key. According to Elaine, children are capable of letting you know what they want to do, and as their parent, you are capable of sensing what they need. If you stop yourself from getting sucked into grief you will be better able to hear the messages that your child is trying to send to you.
What does Elaine love about COTS?
She loves how there is a community of transplant families where kids and parents can get to know one another. It is very friendly and inviting and it is wonderful getting to meet new families. She shared that having more programs that promote healthy lifestyles, like being active, would be great to have. For example, Addison has been going to the world transplant games since she was four, and the first one she went to was in Argentina. Having mini-world transplant games throughout the year or events that promote physical activity would help parents and children gain exposure to what is available to them.
What does Addison like to do?
Addison loves going skiing with her dad. Her little sister is currently learning so that the whole family can start going on skiing adventures together. Addison also does jiujitsu and triathlons. Aside from sports, she enjoys playing the piano and reading. Lately, during this COVID-19 time, Addison and her mom have been reading together, having tea parties, painting their nails, running errands, and enjoying their one-on-one time. Addison loves to volunteer and does public speaking events where she discusses organ donation. She has done speeches at the Intensive Care Unit (ICU) at Children’s Hospital which has helped her own her story and embrace it, giving her a sense of pride.
Coping strategies and self-care
Be involved in the world of organ transplant and organ donation, and volunteer when possible. Currently, Elaine sits on the board for the transplant research foundation which raises money for transplant research. Elaine believes that channelling time and energy into research is important so that eventually, a cure can be found.
Words to describe Addison
Strong, resilient, vibrant, alive, curious.