Ups and Downs

What a trivial way of putting the last several days, even months and especially this last Friday.

Over the course of the last several months Camille and I have seen Addie breeze through a cardiology appointment as if we didn't even need to be there. But even there, hearing our cherished cardiologist explain Addie's condition to a young doctor as, "yeah she was very sick," is the type of punch to the gut no amount of emotional conditioning will ever prepare you.

Then cut to the time this summer when Camille and I were put in touch with a couple that found out they were expecting a baby with a similar diagnosis. They wanted to speak to us about our thought process on why we chose to go forward with having Addie. Those phone conversations were nerve racking. I didn't want to influence them one way or the other or preach to these people because this couple was us a year removed. It wasn't my place to tell them what they should do. They didn't need inspiration they needed an honest look into what may lie ahead for them. We told them flat out this was a hard road. A road we were now thankful to be traveling but a treacherous and painful one. It was filled with so many days where just getting through it was the greatest accomplishment.  I said that it was their call and no one else's. And frankly I don't give a shit (pardon my language mom) if you think it was wrong for me to not try to somehow talk them into keeping the baby. You can judge but I don't care. You have not been where they were.

And then there was the day the sweet Horkey family found out that their baby girl, London, would not have her Glenn but be placed on the transplant list.  We have grown to know and love this family. Their daughter is almost exactly one year younger than Addie and has a very similar diagnosis. We have emotionally and spiritually walked with this family from even before London was born. When I heard that London was going to have to already go the transplant route I was hurt. I was crushed. This not only hurt me because I care for this family but because I knew this route was one step away from Addie's road. So many things continue to go right and these help Addie avoid this path. But even as well as Addie is doing "transplant" is a word that will always stand just off to her side.

Then we get to this last Wednesday. It started with a, now all too familiar, barking cough coming from Addie's room. The debate at 2am was whether to just head to Children's or wait it out. After about 30 mins it was worse so I got ready, packed Addie's bag, and it was off to the ER. Of course Addie was a trooper and and everyone loved her. We saw a respiratory therapist who had seen her at the ICU a year before. He was now a supervisor and recognized her name from the charts and made sure to come over and help Addie through her breathing treatment. I even ran into an old client who is now a nurse there. Great to know people but when you are at a children's hospital it is not the best place to be Norm from Cheers where everyone knows your name.

And then came Friday. What should have been nothing but an "up day didn't turn out to be. Friday was the one year anniversary for Addie's Glenn surgery. She has come so far and grown so much since then. You can almost have a conversation with her. Her laugh is what Ï think of as a "joyful noise to the Lord." We are thankful every day for her and all those around us that have gotten us to this point.  But the day didn't turn out all good. The Horkey family was told that due to some complications London had an only 1% chance of her finding a matching heart for transplant. No words can express the deep pain and sorrow I felt when hearing this. The phrase "but for the grace of God go I" kept repeating over and over in my head. I was taken back to so many prior days when I had so many questions for why God had foisted this journey on us. These questions came back thinking of the Horkey family. Why had they been charged with fighting this battle. They did not deserve this. London deserved a better chance.

So yes ups and downs. Good days, bad days and days that went the full range all in matter of hours. That's what has been the last several months. I simply try to focus on the good and not beat my head against the wall trying to find reason in the bad days. Sometimes they are just bad. Inexplicably bad.  And that is fine. It sucks, but I have to understand that I won't always understand.

So in your prayers please continue to pray for Addie but please pray for London and her family. They need some more ups and the strength to plow through the downs.