5 months ago at approximately this time, me and Tony said yes to organ donation. Now today I finally finished a letter to the mother of his heart recipient. I have no words for the way I feel today, but I have so much to say about organ donation and how it's helped me and my family. I am sharing this letter for a couple reasons. I want all recipients to know they are a gift to us. And I want to bring awareness to the gift of organ donation.
The gift of organ donation goes far beyond saving the life of the recipient. It helped me grieve in ways I can't fully explain. It gave me hope and peace knowing that we could keep other mothers from going through what I went through.
I know that organ donation is a very hard decision to make. I had made up my mind before they even asked me that I wasn't doing it. My Aunt Mary had warned me the night before that if Weston doesn't make it they may ask me to donate his organs. I had decided that I wasn't going to do it. It was too hard to even fathom the idea that my son might possibly never wake up, let alone that they wanted to cut him open and take his organs from me. No one was going to touch him in my mind. But the next day that fateful moment came when they pronounced my baby's time of death at 1:45pm June 18, 2016. After the chaos settled and the room was able to quiet down a bit, a representative from Lift Gift came into Weston's room to ask me and Tony if we would consider letting Weston save the lives of others. I immediately said no. But then ever so quietly, a solemn whisper from Weston's dad stopped me in my tracks. One word, he whispered one word and it changed everything. "Why?" I did not have a rational answer for him. It made me rethink everything. I am so thankful he asked me that simple question. I had no idea how much I was going to need the miracle of giving life to help me through my grieving process. I can't kiss my baby goodnight tonight, but Weston made sure someone else could. My babies heart is somewhere in this world beating strong.
Weston's heart went to a 9 month old baby in Arizona. Below is my letter to her mother. Please share this letter with others. If one person reads this letter and makes the decision to become a organ donor, that's a human life saved. Let's save lives together.
To the mother taking care of my son’s heart,
My name is Kailey and I am of the mother of your babies’ heart donor Weston. I have so much I want to tell you and no idea where to start. I’ve written and revised this letter countless times trying to find the right words. But I realized today on the 5 month anniversary of Weston’s passing that this entire letter could be summed up in one sentence.
Your baby has a beautiful strong heart and I thank God everyday that she has it.
Weston was a 7 year old beautiful, loving, happy little boy. I hope to be able to tell you all about him one day. He was the light of my life, my joy, my everything. He still is. Weston has fought and won many battles in his short life and touched so many hearts along the way. He was Autistic and Non-verbal, but that’s not who he was. It was very important to us that Weston was never held back or type casted. He was exceptionally smart and completely capable of doing anything any other 7 year old could. He never thought he was different and we didn’t treat him special or different. Weston was also epileptic. When he was one month shy of 2 he starting having seizures. We spent the next 3 weeks in the hospital doing countless tests and procedures to find out what was happening. Every day the doctor would come in with a new grim and fatal possible diagnosis. We wouldn’t accept “terminal” and demanded that the doctors keep working to help our baby. In the end, Weston was diagnosed with a temporary form of Epilepsy that children grow out of and normally have a full recovery from. So, we headed home with six different prescriptions and God’s Will. Sure enough, Weston stopped seizing a few months later and had out grown his diagnoses! That was 5 years ago. I knew then and I still believe now that God had given us a miracle. What I didn’t know then was that his time here was only temporary. Weston’s fighting spirit and contagious smile was inspiring to so many people. He taught us all to enjoy the life your given. Not a minute of Weston’s life here was wasted, every moment was full of purpose and beautiful. I think this is why his passing had to have purpose. There is nothing natural or acceptable about a child losing their life, but Weston managed to make it a beautiful tragedy.
On June 16, 2016 I took Weston and his sister Ava to my best friend’s house to swim in her backyard pool. It was a beautiful day and this was one of our favorite ways to spend the hot summer days with our children. Weston in particular was a little water bug! He loved to swim, and even though he loved the pool, beach is his favorite place in the world. I think the water was very therapeutic to him and a place where we felt free. His story is very bittersweet because Weston died doing what he loved most. While playing on the step in the pool, he had a lock down seizure and slipped under the water. A lock down seizure is basically where every muscle in your body tightens and you’re paralyzed. So there was no splashing, no noise, absolutely zero indication that he was struggling. I was telling his sister to share a pool toy with her friend and knew he was on the step playing quietly not 10 feet away. At the same moment I turned my head towards him, my daughter screamed. We both saw him at the same time. I grabbed him out of the pool and gave him rescue breathes while my friend called 911. Next thing I know he comes out of the seizure and starts spitting up water. He stood up crying and jumped into my arms. He was fully alert when paramedics arrived. Unfortunately, his brain had already started to swell from lack of oxygen and he slipped into a coma in the ambulance on the way to the hospital. We spent the next two days at the hospital waiting for the swelling to go down and for my baby to wake up. But, he never did. On June 18, 2016 at 2:47pm they told me that the swelling caused too much damage and Weston went to be with Jesus. I will never be able to describe the pain and heartache I have felt every moment since then. The only solace I have is knowing that through organ donation Weston could save lives. Somewhere in a hospital room just like the one I was in, I could spare another mother from my pain and give another child a chance to leave that hospital. Organ donation has given us so much; it has been a pivotal part of our healing process. It gave us answers and hope when there were none. My son’s story and life has so much purpose. I realize now, I had my miracle when Weston was two, I had 5 more years to enjoy my baby. But now, Weston is your miracle! This was his gift to the world and God chose you to receive it! I want to thank you for giving us comfort and hope in a time where I had none. Weston donated organs to 5 people. That’s five lives saved, five families that remain whole, five miracles. Each of these people are so special to me; however your story has a special place in my heart. Organ donation usually takes about two days to complete so they will (if possible) keep the donor on life support during this time. I cherished this gift of time with my baby. I got two more days to sleep with him, kiss his cheeks, brush his hair, smell him, sing to him, study his every feature and tell him goodbye. On the evening of Monday June 20, 2016 the doctor told me they were ready for him. My mom and I gave the nurses a pair of his favorite pajamas to dress him in after the surgery; then went to the waiting room to tell my family it was time to say their final goodbyes. I stood there staring at the door and knew that there was absolutely no way I was going to be able to do this. My heart was racing, my fists clenched shut, and my feet planted firmly. My mind was trying so hard to think of a way to wake him up and take him home. I had lost all my strength and was seconds away from collapsing and breaking down. In that very moment, the doctor from Lift Gift (the donation company) was leaving and spotted me. He came over and gently placed one arm around my shoulders and whispered, “Can I have a moment?” He and I stepped aside, he held my hand and with tears in his eyes said, “I wanted to tell you that Weston’s Heart will be going to a 1 yr old baby girl in Arizona. This baby hasn’t gotten to experience life yet, and because of Weston she could hopefully be playing outside by the end of summer!” I immediately burst into tears, grabbed the doctor for a hug, and said, “Thank you!” I can’t describe the relief I felt, his heart was his most special gift to this earth and now it is going to save a baby’s life! It was like a weight wa
s lifted off my shoulders, and all of a sudden I was ready. In the absolute worst moment of my life, your baby gave me the strength I didn’t have myself. She gave me the most beautiful gift that I could have been given in that moment. She gave me peace in my heart, and a reason to thank God.
I think about you and your family every day. I pray that your daughter is healthy and happy. It is important for you to know that she received a very good heart. Weston was a fighter, lover, strong willed, beautiful, little boy and one of the happiest kids this world has ever seen. Your daughter’s heart has touched so many lives, raised thousands of dollars for Autism foundations, and fought more battles in the 7 years Weston had it than most people will see in a lifetime. But he always smiled. He was happy through it all. This heart has been tested and tried and stayed pure and strong through it all.
I am now trusting you to take care of Weston’s most special gift to the world. Please care for it, protect it, and cherish it. When your daughter is old enough, please share Weston’s story with her. But most importantly, please know that you and your family are heroes to my family. From the bottom of my heart, mother to mother, thank you for helping us get through such an unimaginable tragedy. I hope to hear from you when you are ready.
With all my heart,
Kailey
