Today was certainly one of those days the goes beyond extraordinary. Never in my life could I have ever imagined what I was able to experience today. I have been thinking about it all evening and trying to come up with a way to be able to adequately express the profound impact today had. I am so incredibly blessed, not only to be a part of such an amazing community, but to also be accepted in such a way that families allow me to be a part of something so intimate. It is truly such a privilege to be trusted in such a way.
As I approached the hospital, I was anxious for a number of reasons. Of course I was nervous for Jax and how the transplant would go. However, that was not the only thing weighing on my mind. I was thinking about Charlie…he has been on my mind for weeks. The last time I saw him, he was full of life and had this incredible spunk. I knew that would not be the Charlie that I would be visiting today.
When I entered the room, there he lay in his bed, in terrible pain. I wanted to cry…I wanted to hold him. I got down on my knees and looked right in his eyes and his pain was so evident and it pierced me right in the heart. He did not need to utter a single word, his eyes said it all and in that moment, my heart was broken. Seeing him like this was so hard because I know what a little firecracker he his.
I watched his amazing mom, Trisha, giving her tender carefor him. The love of this mother is a such a beautiful thing to witness, I just watched in complete admiration. How she steels herself and remains calm through his agonizing cries is beyond me. However, I know that she is in fight or flight and she does what needs to be done and she is strong for him. I wish I could take her pain away too, for no mother should have to see her child suffer. As I watched her, all I could think about was her last moments with Seth and how that must be weighing on her mind.
The good news is that Charlie is in a great place and they will fight for him. He will be getting his new cells sometime on Saturday. Please pray for Charlie as he receives his new cells. Pray that they will multiply fast so that Charlie can get back to the business of living.
Please check out this link to find out how you can take part in Twenties for Charlie
You can also follow his prayer page here: https://www.facebook.com/PrayersForCharlieKnuth
After reluctantly leaving Charlie, I made my way to Jackson’s room…my stomach full of butterflies. I opened the door and there he lay so incredibly peacefully. I could have watched him for hours…he was so precious.
Being present for Jackson today was such an honor and a blessing. The chaplain performed a lovely service for Jax that I was allowed to participate in. We all prayed over him and anointed him with oil. What an honor to be invited to share in something so intimate.
Then came the magical moment, his marrow arrived! The moment that we were waiting for. The moment that everyone fought so hard for was finally here. In just a short time, Jackson would be receiving his cells and he would hopefully begin his healing.
Being there as Jax received this special gift left me feeling a multitude of emotions, but the strongest of them was hope. Hope for Jackson, hope for his miracle and hope for a cure.
I am blessed to be on this journey and to have the opportunity to watch as this miracle unfolds. Once again I find myself feeling incredibly humbled.
Thank you to Trish, Jessica and Lynn for allowing me to love your boys! They have such a piece of my heart and I will forever be grateful to have had the opportunity to be touched by these glorious souls. They are incredibly brave, and they are an inspiration to so many.