CF Does Define Us & We Are Blessed

This weekend we were invited to share our story at the Children Organ Transplant Association (COTA) Miracle Maker Event. COTA is the the not for profit organization we worked with for Danny’s transplant fund. They are amazing and will be getting their own post, but the most important thing to know is they have changed our lives and so we are honored for any chance to help them.


COTA’s Miracle Maker Event
In a later post, I will recap our trip to the COTA event in Indianapolis,  but today I wanted to share the amazing message we got to speak into existence with this group: we are defined by CF and we are blessed.


Often folks afflicted by disease or illness or difficult circumstance say “I have XYZ it doesn’t have me”. Being determined by their surroundings is something they refuse. It’s pretty impressive message when we live in a world of blaming and excuses. The truth is certain circumstances make life play out in a specific way or make the plans you had in mind not possible. Believe me – we know…. but these folks refuse to give into that sort of defeatist thinking and continue to live life despite what it has thrown their way. I love that message and often use it to motivate my own changes! But we experience our life a little different. The challenges we faced broke us down…. but only to renew us and shape us into the people we are today.


Danny said CF has defined him because his life is an example of beating life expectancy,  or it is the result of hard working medical professionals, or is the recipient of successful research, or the product of dedicated family and friends. Transplant has defined us because we had to stop all of life. We were just in survival mode. We were reduced to just living moment to moment and often wondering if the next would even come. And once we healed, we also had to learn how to be husband and wife – not just caregiver and patient. This experience changed us forever, but because of it we are better.


COTA’s Miracle Maker Event
We have faced our worst fears and survived. We have fought for life, for our marriage, for our relationships, for our future. We have been forced to choose between what matters and what the world says matters. From these experiences we have learned to fight fear and frustrations of being left behind on certain life milestones with gratitude for what we do have. We have comforted our confused hearts that can’t find the path forward, by realizing the change in plans have given us the opportunity to serve others with our story. Finally we have understood, that shedding the skin of life we *thought* we were supposed to have, leaves room for a life we never imagined. And finally we have come to really know that God has a plan and he has shown us we are equipped to handle more than we thought…. so maybe there is even more to come. The blessings from the pain have been overwhelming…. so we aren’t so afraid of it anymore.


As you may have noticed we faced a hard challenge last week. It was personal and Danny and I think it best to not share. A lot of our gratitude and the motivation of blessings to move forward have felt stifled and hidden. It’s not that we don’t believe our own story, it’s just that it is hard to always put into action these beliefs….especially when life goes literally the opposite way from what you wanted. And just cause it happens a few times in your life, you do not necessarily become good at rolling with the punches every time. But ya’ll God knows what he is doing. This weekend gave us a chance to remember our journey and what we are capable of surviving. This trip brought us a chance to be around a group that always lifts us up and reminds us they are constantly supporting us in prayer. And selfishly, best of all – a chance for Danny and I to be somewhere completely new that opens the lines of communication best. We agreed we had lost…. we agreed that hurting together is ok… and we agreed that if we have each other, we can get through this and all the bumps the future holds.


COTA’s Miracle Maker Event
If you read back through my posts during Danny’s sickest times, I wondered if life would be easier to deal with then if we were experiencing it together. We both had such different experiences during transplant feeling and healing together was really hard. It was awful to say but I envied those parents of sick kids cause they were going through the dark together. This recent loss we are walking through together. In some ways it has been better to have a buddy, but still I wished we could have just not lost! However in this dark period I can see all the lessons we have learned coming thorough and our strength being made even stronger. In a weird way, God did answer this prayer of giving us a challenge to face together, but waited until we were in the strongest place to handle it. This is all part of His plan…. all part of our story….it already is, and we are being cemented even more day after day as forever teammates.


And so again we say – we are defined by our hard stuff and you know what? We are blessed because we are better for it.


To see Danny’s full speech click here.


Thank you so much for reading and remember to make it a great day!

4 thoughts on “CF Does Define Us & We Are Blessed

  1. So love your words…..written and Dan’s COTA speech….wow you are both inspiring on many avenues and much more than you know!!!! Thank you for sharing and reeling me back in. Hugs and God bless.


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