We will use that achy old arm

I try to remind myself when I get frustrated, or feel hopeless or attempt to cope with any of the numerous emotions my family feels on a daily basis that we are not alone. I mean this in two ways. The first is that we are not the only family waiting for a miracle. There are over 123,000 people waiting on this list. There are 123,000 people hoping, praying and pleading that they get this phone call. There are 123,000 individuals waiting for a second chance, for the gift of life. While it may feel to us and our friends and family that we are the only ones in this battle, we aren’t. I try to remind myself that as challenging as this journey is with all its ups and downs, twists and turns, many other mothers, brothers, fathers, sisters, sons, daughters, aunts and uncles have been through and are going through the same thing. I try to remember that at least we are lucky enough to have the people we do surrounding us. We are not alone because we are surrounded by family who give up their plans, friends who give daily words of encouragement and continuously offer whatever they can, and strangers who may not completely know or understand our situation, but still offer a kind word or a smile. We are surrounded by people who give us strength.

In high school, we had a day called "Ethics Day." One of the prompts was deciding who would receive a heart transplant. While some students picked the doctor or the child or the mother, I didn't pick a person, I gave a requirement. For those of you who didn't know me when I was younger, I was quiet (my how that’s changed!!) That day, I stood up, and told my class my requirement was the recipients support system. You have to have one. If we thought it was challenging when we first realized my dad need another transplant, it has gotten exponentially worse. We’ve had hope, heartache, anger, frustration, curse words, crying and everything in between. If we thought the past 6 months were difficult, what happens if we aren’t lucky enough to get the call for another 2 months? It is our support system and the people surrounding us that will make my dad and our family fight through. Yes, right now it is freaking difficult just waiting for a phone call, but I can guarantee its going to get a hell of a lot harder before it ever gets better.

I made the argument that you as a person waiting for the transplant have to have a certain level of perseverance, which my dad has showed unconditionally. Every day I want to tell him he has to keep fighting not just for him, but for me. I expect him to walk me down the aisle one day and to dance to butterfly kisses. While I cannot fathom how wretched it is constantly itching, feeling crummy and waiting for a certain phone call, I do realize how much everyone means to him. He has to keep fighting because it's not just for him. It's for my mom, my brother, my sister, his siblings, his friends, his nieces and nephews, and the future family that will come. It’s thanks to our support system that when my mom (who is a champ) or I can’t make him smile, someone else will. It's thanks to our support system that my dad has distractions and that my dad keeps fighting. (It is also thanks to my dad being generally just awesome, but that post is saved for after we get the call!!)

So with the springtime around the corner, the sun beginning to shine longer, and our favorite season moments from beginning, I will end with the same sentiment I have clung to. I don’t know when, I don’t know where and I don’t know how, but soon someone is going to use their “achey old arm to push the sun back up in the sky and give us one more day of summer.” And when that day of summer arrives, and we all take a deep breath before we start the next, but much happier adventure, you all will be here for the celebration. So, thank you to each and every one of you who has called, texted, emailed, sent flowers, sent food, sent thoughts and prayers, sent hope, sent love and everything in between, because without you this would be a million times harder.

Lots of love always,

Bailey