I've been feeling like I'm starting to sink... sink into the depths of despair and sorrow. My anxiety has become so bad I am now on medication to help me walk through the days and be present for Brian. And we are present for Brian. He needs us. Ed took him out before dinner last night to "Love Bomb" him. They went to Arnold's Family Fun Center, where Brian reminded Daddy was the place we all were just recently for Gavin's "Half Birthday" celebration.
He bounced in bounce houses and went down huge blow up slides and played duck pin bowling. It was good for both of them. With me at bedtime, after our book, I walked to the door to turn off his light and I heard, "Oh! I forgot!" He jumped out of bed and walked over to the little plastic heart that he made at the hospital that hangs on his closet door by the "invisible string." He shook the heart, gently tugged the string and whispered, "Good night, Gavin."
I'm not sure how I'm going to do this.
The planning is good and bad. It keeps me busy, but then I suddenly feel like I'm drowning in decisions and plans. I was so grateful that some of Ed's former co-workers took over handling videography for us. They will even come up with a way for me to share it all online for all of you at some point in the future. And I have a wonderful woman that will be taking the programs off of my plate. I'm feeling a little lighter this morning.
But there are some things that bring me a lot of comfort. As I see (or am told) about the incredible impact Gavin's story has had far and wide, I feel so proud. I have always thought that Gavin was sent here to teach and change people. And I can say for certain that he accomplished his mission on Earth.
As you know, I was completely devastated when I learned that Gavin's liver wasn't able to be transplanted in that little "three year old boy from Texas." I worried so much for the Mom of that boy as well as the boy, himself. Although it's customary in organ donation for them to give very little information about the donor and recipient - I do not think it was a mistake for them to tell us the age of this boy and the state that he lived in. I am one that thinks nothing is by accident.
I went back and forth for a while deciding whether I should share this. I am not, in any way, looking to get anyone in trouble. When I weighed the pros and cons, I felt the good outweighed the bad tremendously if I did share it. Organ donation is very important to us, for obvious reasons, and by sharing openly our journey I hope to inspire people in a lot of ways. I hope people are inspired to sign up to be a donor (which you can do here: http://www.donors1.org/registry/ ) I also hope that it changes people's perspective around organ donation. But one of my greatest wishes is that donors and recipients - past and present - are offered a special glimpse into the other side. There are high emotions on both sides - and if I can help lift some of the burden off of the hearts of either side, my job will feel complete.
With all that said...
The other night, still numb from hearing about Gavin's failed liver transplant, I sat in bed and looked at my personal email. I sighed when I saw there were over 400, knowing that I'd never get to all of them. At least not that night. So I scanned down the list and felt my heart stop when I saw one with the subject line:
3 Year Old Liver Recipient Family from Texas
As I read the letter, tears streaming down my face, I felt the burdens of the failed liver transplant lifted from me. I was so grateful for this beautiful letter - profoundly changed, actually. I had been so worried about this mother and her precious three year old son - so her email was such a comfort. And, after speaking with my new friend, the mother of this three year old little boy, we both decided that it should be shared. Our hope - both of us - is that it will help more people who are traveling the emotional journey of organ donation. That it will bring hope to people. And, probably most importantly, that it will raise awareness and encourage people to become donors.
With so much love and respect, allow me to introduce you to my new friend - the actual mother of the "three year old little boy from Texas." (I removed all names)
I’m not quite sure how to start a letter such as this but I will try my best. Forgive me in advance if the words fail me as I’m not even sure there are any “right words” to use.
I believe we may have been your son’s intended liver recipient yesterday.
We have a 3 year old little boy who we found out about a month ago has liver cancer (his twin had the same cancer 2 years ago). We live in Dallas, TX and yesterday morning around 7:30AM, we received the call we had been waiting for; there is a possible liver donor match for our son. Within 30 minutes, we were driving to Houston in preparation for a possible transplant surgery.
Before I say anything further, I want to express my sincerest condolences for the loss of your son. I do not know you, but as a parent also dealing with a chronically ill child, I can imagine what a long, difficult journey this has been for you and your family. I read just a few of your most recent blog posts and I take comfort in knowing you have so many people surrounding your family with support and love. I hope the love you are surrounded with helps comfort you during this tremendously difficult time. It sounds like your family has been through more than your fair share of turmoil and yet, I can tell by your eloquent words, you have handled it all with dignity and grace.
I had received the link to your blog this morning from a friend through Facebook who put two and two together. I have been thinking about your family all day. It sounds like from your post, you knew it was intended for a 3 year old little boy in Texas. All I really know is the surgeons flew out to Delaware and upon further evaluation, the liver could not be used. They never supplied a reason why.
My son has quite an extensive medical history in his short 3 years (liver cancer is just the most recent diagnosis). He was a previous 25 week twin born with chronic lung disease and came home after 9 months in the NICU, trached and on a ventilator. But, that is not the real intent of writing this letter.
I wanted to let you know, whether we were the actual intended recipient yesterday or not, that the decision your family made in the midst of your grief and own personal suffering is amazing. Other words that come to mind are: Inspirational. Courageous. Brave. Selfless. Beautiful. Beyond generous. A true gift. In fact, the best gift someone can ever give; the gift of life. I read you are holding out hope that Gavin’s kidneys could be used. I will pray for that gift to happen since I can see how much it meant to your family and I understand what it can mean for the recipient family.
Even though we did not receive a liver yesterday, you have given another gift in its place. A gift of hope and understanding.
I would like to explain. I was devastated when I learned of my son's cancer diagnosis. My heart, shattered into a million pieces. We had already fought so hard, so valiantly, over the last 3 years to get our two boys healthy. Then, when I learned a few weeks ago he would need a child liver donor to have a chance at his own survival, it was a double blow to my already broken spirit. I cannot quantify how many hours of sleep I have already lost, knowing when we get the call for his liver, it means another family has lost their precious child and has made the ultimate sacrifice. I have been guilt-ridden for weeks over the thought of what saving his life will mean for someone else.
But, after reading your blog, the guilt I had been carrying around is a little less. The heavy burden I was carrying around, a little lighter. I understand and can see the perspective of a donor family so clearly now. The pride you feel towards your child and the honor it is to be able to provide such a gift. Thank you for sharing your story so openly, so completely. If you had not, I would never have read what I did this morning. In time, I may now be able to obtain a new level of acceptance and appreciation for the process I could not have gained anywhere else. So even if this is all total coincidence, I still learned a great lesson today. If we were the intended recipient, please know just the gesture alone meant the world to us. We just were put on the liver transplant list 6 days ago so he has time for another potential match. We were warned ahead of time there is a chance we could get the call and then the surgery might not happen. I tell you this so you know we are ok. It sounded from your post you were genuinely concerned about the recipient family. If I can help ease your mind even in the smallest way, I wanted to reach out and do so.
Please do not feel the need to respond in any way. Please focus on your family and healing during this difficult time. I just felt compelled to let you know that if we were the intended recipient, even though the surgery itself did not happen, you have inadvertently helped me more than you can possibly know. I do have continued hope that one day there will be a match for our son and you have provided me insight I may have not gained otherwise. I have hope that there are other wonderful families like you out there in the world and that one day, I can share with him what incredible, selfless people we have met during his journey to recovery and remission.
The organ donation process is set up to protect identities so internet sleuthing and meetings like this won't happen. But to be honest, I think this meeting was supposed to happen. I truly believe it was orchestrated from Heaven by my sweet and generous son... his way of continuing to help others and save lives. I am so grateful for this chance meeting and the impact I know it will have on the world. Thank you, Gavin.
Please, in Gavin's memory, remember our precious "three year old little boy from Texas" in your thoughts and prayers. We are rooting for you!!