7/17/18 - Hope


I don’t know if we had hope to start with, lost it along the way or if we never had it at all, but today we found hope. It’s been a long road, getting to today. I’ve been thru the ringer, so they say; my family included. It’s very hard to stay positive and hopeful thru such heartache. Lord knows there has been a lot of heartache in my life. Today, though, was a day we will always remember as a good day. Well, I’m little and probably won’t, but I know Mom will tell me about today and how special it was some time when I’m bigger. I am 145 days old today. That is 145 days in the hospital and 112 days on the heart transplant waiting list. Today I left my hospital room for the first time ever, in three hospitals, for a pleasure trip instead of an OR visit. I got to go on my first adventure. I explored the hallways (IV pole, Oxygen and Berlin Machine in tow) and checked out all the interesting things on my unit. I am so thrilled!! Once I get myself more familiar with my surroundings, I can go find my girlfriends, they don’t have to just come to me! He, he 😉 This is a huge step in my journey...my very first taste of freedom from my illness. It gave my Mom, family, friends and care team a new peek at hope. Hope for this adversity to be something I can fight thru and come out okay. It was a great day. No more to say tonight. It was a great day. I’m so thankful. Please continue to pray for me, my family and my someday donor’s family. Pray my heart gift comes soon ❤️ -Heath

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