Justin Sweeney became an organ, eye and tissue donor after his passing on March 8, 2016. His mother Kelly shared this remembrance:
The greatest gifts anyone can receive are the gifts of life and love. On August 8, 2008 I was given both of these when my son, Justin Marcus Sweeney, was born.
When I held him in my arms for the first time, I looked straight into his eyes and fell in love with him. His blue eyes sang a song of their own, without any words. It was as if you could have a conversation for hours with total comprehension, leaving the rest of the world out and we were fine with that. No one can quite understand the bond that we had, but over time we slowly started letting everyone in on our secrets.
When Justin was diagnosed with Spinal Muscular Atrophy, he was only 3 months old. Thus began a journey that was a new chapter in both our lives. Never once did Justin allow SMA to define who he was, and never once did he complain. Justin stayed strong and fought every single day to make the best out of an ever worsening situation. When obstacles arose, Justin overcame each of them with an amazing grace.
The day we got the news about his test results was one of the hardest of my life. I thought that in two years I would have to say goodbye to my best friend and the love of my life. It didn't seem fair to me, but Justin always reminded me that even through heartache you need to hang on to hope. So we chose hope instead of despair, and because of this, we were able to spend not just two, but nearly eight amazing years together.
There were many adventures during those eight years, some good, and some bad. But even with the bad, we found the good in them. One of my favorite day trips with Justin was to the Hidden Valley Animal Adventure in Varysburg, NY. Justin’s dad was close to taking down a donkey that was trying to devour his ventilator and oxygen monitor tubing.
We laughed pretty hard at this, because he looked silly and we knew that Justin’s to-go bag was filled with extras. Justin knew that he was safe with us and trusted that we would do anything to protect him. Justin’s smile was hands down the most beautiful and boundless measure of hope. No matter which way the wind blew, Justin always navigated to positive pathways. I will forever hold on to Justin’s smile.
It was raining that day: Justin’s favorite weather. Whenever it rains, I think of you, Justin. Even when the rain isn’t followed by a rainbow, I still find some way to be happy about it because Justin would have wanted the world to rejoice in it.
The hardest thing I ever had to do was to let go of Justin’s hand for the last time. When we found out that Justin’s physical body was here but that his soul joined the universe, my heart shattered. Justin snuck off with an angel in his sleep but she didn't let me come along. The only thing that makes sense to me is that Justin left on his own terms, after he had given his all. He somehow knew that we would never be prepared to say goodbye, and Justin’s soul quietly drifted into the sky, at seven years and seven months old.
Upon the clouds Justin is free to run, free to dance, free to sing, and freed from the bounds of Spinal Muscular Atrophy for the first time…
I hold on to our memories, and they surface like flowers bloom. From time to time I pick a memory and keep it in a pocket of my heart for the day. Today I picked one when Justin was three years old and we were doing karaoke in the bedroom. His smile was lit like the sun and I can still hear Justin’s little voice inside my head and see his shoulders going up and down with excitement. Justin personified the human capacity to love. Even without him physically present, I feel him every day: Justin shared genuine love with me and I will carry this gift with me every day that I live.
So Justin’s journey did not end after he passed on from the physical world. His gift of love to me continues, as does his gift of life: through organ and tissue donation with Unyts. Justin’s heart beats on in a six-year-old boy in Michigan. Justin’s eyes have travelled all over the world through the international program. People in other countries who have never been able to see were given the gift of sight because of Justin. His tissue helped many people who would have not been able to walk if not for Justin’s generosity. Justin’s kidneys saved two lives. He is You area HERO.
I long for Justin every day, but I know that our journey together is not over. I'll continue to be strong for Justin and share his story of inspiration, love and hope with the world.
As a recipient of Justin’s gifts, I am forever grateful. I may not be able to see him right in front of me, but I definitely feel Justin everywhere. Justin is a movement and my miracle. I know that Justin has visited the highest mountains and swam in the deepest oceans, and with every creature he encounters, will share a piece of himself. That’s how I think of Justin. I picture him free, through the rays of sunshine during the day and smiling above us in a blanket of stars in the night. His story will never end, and his next chapter is how he brings hope to the living. Justin, you are love, and you are miraculous.