One year ago today…our sweet baby girl received the most precious gift, a new healthy heart. I am often overcome with emotion when I think of that day. I still can’t believe that we were so lucky to be blessed with a new lease on life for Katy ( and our entire family)
My heart still aches each and every time I think of our brave,benevolent donor family. I can only imagine the heartache they are facing on the anniversary of their precious child’s death. I can only hope that they can find comfort in knowing that their child lives on in Katy. Mike and I will never be able to properly express our gratitude to them although we will certainty try.
One year ago… I was writing a blog post and I honestly believed that Katy wouldn’t be here in six months if she didn’t receive a heart. I was preparing for the worst… I had given up hope and was preparing for what our life would be like without the most amazing, funny beautiful girl I have ever known. Oddly enough Mike never let his mind go there he always believed she would get the perfect heart. Odd that we were living the same life and fully expecting different outcomes yet neither knew what the other was planning for.
I would be lying if I said everything has been roses and Katy got her heart and life went back to normal. Because this first year has been hard. Waiting was definitely harder… but post transplant life has been a hard adjustment on many levels. The first being this whole idea that we are going to go back to normal. What is normal? What are we going back to? As parents, as a family this is the only normal we have known. We aren’t going back to normal… we have to find a new normal.
A new normal while we struggle with a lot of the other parts of life that made up our old normal. Still lots of meds way more than pre transplant, doctors appointments, much more frequent than pre transplant, heart caths monthly, much more often than pre transplant. Medically in Katy’s case life after transplant was actually more intense than pre transplant. All the while trying to find this new normal. School and schedules, extra curricular activities… throw in Katy’s bout with CMV and Grade 3 rejection…and our new normal is feeling a lot like our old normal. Except it’s harder to vent and it’s harder to ask for help because we got the greatest gift in the world and we should be all set. But we weren’t and some days like last week when Katy was unexpectedly admitted for 5 days with a horrible infection we needed our village. We are always going to need our village. Katy’s heart transplant was not a cure it was and is a band aid. Every time Katy gets sick she is SICK and at risk of dying. A simple cold a a bout with strep can kill my child.
That is our reality, that is our normal. But, that does not make us or Katy who she is or define how we live our lives. We will not live in fear… we will be cautious but Katy will go to school. Katy will play soccer. Katy will dance as long as Katy wants to dance.
Katy’s new heart has given us hope… hope that Katy will get to do the many things. Things I honestly never thought she would live long enough to experience. I can now allow myself to picture her in a prom dress… and think of her packing up and going to college. These are things I could never allow myself to think of that… it hurt to much. It represented everything that I believed would never be. I can now daydream about those things. One of the questions we asked in the early days post transplant days was can she be a mom now?! We were told to focus on Kindergarten…but FYI a heart transplant recipient
To see Katy out on the soccer field 13 weeks post transplant… words can not describe the happiness my own heart felt. Seeing her running around with her friends and climbing the hill to go sledding. These are all things she would not be able to do without her precious heart.
Although the fight goes on…and the post transplant life isn’t exactly as dreamy as I had hoped. We definitely traded one illness for another. The difference being one was fatal and now we are dealing with a chronic illness. We fully expect the second year post transplant to get easier. Can’t wait to see what is in store for Katy and her Rock Star heart in 2014. Thank you to everyone who has been there for the highs and lows. We love you and can’t imagine our lives without you.