Hope Means That We Must Trust & Wait For What Is Still Unseen…

As of today, Jonathan has been on the Kidney Transplant Waiting list for 73 days ~ 21 hours and some minutes……

It can be difficult for some, to wait for something that will completely change your entire life. Maybe a job offer, an acceptance letter to a University, or results from a medical procedure.

In our lives, we have waited for quite a bit, like science. We waited 20 years for science and researchers to come up with a medication that would stop aHUS from destroying Jonathan’s vital organs. 20 years may seem like a long time, and don’t get me wrong it is, BUT we did it. How? Well, very carefully.

We have learned to live in the moment. To live for today. As much as we like to look forward to the future and what life has to offer, over the years, we have purposely NOT tried to look too deep. The reason is the more we concentrated on today, the more we enjoyed today. The future was too unknown. I was extremely fortunate to be able to be a stay at home Mom. I was able to take in every moment of Jonathan’s childhood and store it in my mind and heart, making beautiful memories. I know that I was guided by my faith and the hope that whatever the future held for my son, I, WE, would be able to handle. So I left the future where it belonged ~ IN THE FUTURE.

Today we received information from the Scientific Registry of Transplant Recipients (SRTR), at UT Southwestern Medical Center, William P. Clements University Hospital.

According to the statistics, a patient who receives a Kidney Transplant from a deceased donor has an excellent survival rate. The statistics for a Graft (kidney) survival rate from a deceased donor is also excellent. Those are the statistics that are important to Jonathan. Since I am unable to donate, his kidney will be coming from a deceased donor. As long as Jonathan takes his medications after transplant, follows his doctors orders, and takes care of himself he will do great. I DO NOT WORRY about Jonathan following these guidelines since he has been doing this all of his life. He knows the importance of his life and this special GIFT. ❤

So while he waits, Jonathan is enjoying his summer, hanging out with his friends, going to the pool, on his PS4, and occasionally hanging out with me. Next week will bring not so much anxiety, but something that we have never done before. I am leaving next Friday for a weekend conference with The Atypical HUS Foundation in Denver, Colorado. Jonathan will be staying at home ~ without me, and I without him. This is huge, but long overdue. He will do fine, managing his daily routines, and I am sure that he and Leo will have a blast without me here. 🙂 I, fortunately, will be busy and preoccupied.

Thank you all again, for the continued support and love you consistently show Jonathan and our family. We will continue our journey, our day to day, and pray for the day Jonathan’s phone rings and he is told to get to Dallas…..His life is about to change.

Thank you for reading.

Thank you for taking the time.

Much Love,

Jonathan Kolp’s Mom ❤