When in elementary school, we were all asked to write a story about ‘Our Hero.’ None of us really understood what, or rather who, a hero was. Most of us picked the best football player, singer, writer, or anyone that was popular, even though we only knew a little about them. I honestly don’t remember who I picked as my hero then, but I know who I’d pick now, and that’s the story I’d like to share this Father’s Day.
Late last year we had company over. Now this was not something out of the ordinary, but it seemed a little awkward. This is the first time I met Dilyn.
As his mother and father walked up our steps, I saw this small hand holding his mother’s. While our parents were exchanging pleasantries, I spent my time staring at him. He was, for lack of better terminology, yellow. He was hard to look at, or, away from. You could see his bones protruding from his neck, his clothes looked at least a size too big and his arms appeared to have no muscle. The yellow color made me look, the rest made me forget what I was doing and stare.
This little boy, in all the strangeness, had Alpha1 Antitrypsin Deficiency. To put it simply, it’s cirrhosis of the liver. He was in desperate need of a liver transplant. He’d been on the waiting list for a cadaver donor, but that just wasn’t happening fast enough, and if things kept deteriorating at the speed they were, Dilyn would be dead before his 9th birthday.
That night I found out that my dad was sending off the first round of paperwork to see if he was a match for Dilyn. We waited.
(My father was not solicited by Nikki and Scott, Dilyn’s parents. My father knew both of them from his time on the local Volunteer Fire Department, and was friends with them on Facebook. On November 21st Dilyn’s father wrote:
“This is no joke, if you would be willing to get tested to see if you are a match to help my son get a liver please let me know. This is not joke, all medical bills will be paid."
My father replied to him in a private message:
“Hey Scott, saw your post on here about the need for your son. I am an A-positive blood type, 45 years old, weight 185lbs. I am a non-drinker, non-smoker. If I could be of any help, just let me know. Would be very happy to help a young man have a better life and his family enjoy having more healthy time together.”
His father responded, with a phone number and a mention of the paperwork that would be sent to be evaluated for an ‘on paper’ match possibility.)
This process of paperwork, blood tests, MRIs, biopsies and a psychiatric visit went on for around three months. During this time Dilyn’s family was kept in the loop about a potential donor match. I found out later from his mother that at Christmas, while wrapping gifts, she was explaining to Dilyn that my father may not be a match. She said he never once looked up from wrapping gifts and responded, ‘I know mom. But we already know he’s a match. We got this.’
After the last set and a final visit to Northwestern Hospital in Chicago, my father received ‘the phone call’ that he was a match. From there a date was set; February 27th.
At this point, it was no longer speculation or the wondering of ‘is this really going to happen?’ because here we were, a week away, and I was terrified. Granted, some of my fears were petty, because the surgeons who would be doing this procedure do over 150 living liver procedures a year. However, that is my father. He is my rock, and my support. He would be going under the knife for some kid I met a few months ago, and what if the kid still died? What if this didn’t help like they planned and he still lived in misery? What if my father got sick? What if something bad happened and … what if ... what if... what if?
The weekend of the surgery we went to spend time together in Chicago, visiting the Willis Tower and other sights the city had to offer. Sunday night, as we all went back to the hotel, there was an overwhelming sense of unease, at least... for me. Monday morning arrived earlier than I wanted. I only slept for a handful of hours and most of that was tumultuous. I kept silent prayers to myself, whispering them when I hoped no one was listening.
There are absolutely no words to describe what I felt walking out of the hotel, from the parking garage to the hospital, up the elevator and sitting in the Surgery Check-In, Family-Patient Waiting Area. Thankfully the next hour happened in a bit of a blur.
My father was escorted to the preparation area, as my mother, sister, grandparents and I made our way to the surgery waiting area. I spent the majority of this time wondering why hospitals have to be so complicated as wandered from one side of the hospital to the other. We waited, for what felt like forever, to be able to go see him before he went under. Only two people were allowed in the surgery prep area at a time and my mother and grandmother went first. We were told that we had about a half hour to spend with him, and just to use time wisely. I kept putting it off, letting other people go ahead of me, but finally it came down to the last five minutes.
I wanted to tell him I loved him, and that what I thought he was doing was absolutely selfless, but as I walked around the corner in the prep room I had to stop and pull myself together. I knew I’d be seeing him in a hospital gown and all tucked up with tubes and wires attached but it didn’t really sink in until I actually walked into the curtained off area.
Being the inherently happy child that I am, I pulled myself together, grabbed my phone, and said something along the lines of, ‘SMILE DADDY! You’re going to be internet famous!’ I still remember every ounce of dread I felt. Taking that picture, walking over and hugging him, was one of the hardest times I’ve ever had to keep a smile on my face. Walking back out quickly, and I’m sure that both my parents picked up on my rush, I almost broke down in the hallway leading to the waiting area. Realizing that there was one more very important person that wanted to see him, his father, I made my way out quickly.
(For explanation’s sake: Starting out on this journey I wasn’t exactly supportive. I couldn’t believe that two people who we didn’t really know were coming to us and expecting my father to give up ‘so much’ to this kid. Over the weeks before this, seeing the child deteriorate and still have all of this hope softened my heart, and made me realize I was the one being selfish.)
The real waiting game began then. The surgery started at 7:30 and they were going to call us every two hours and update us on what was happening in the operating room. We received the first phone call at the ‘first incision’. My sister and I had effectively set up shop, she was coloring and I was playing Minecraft, to pass the next several hours. Two phone calls later and hearing that ‘Everything is going fine, we just removed the liver,’ removed some of the fear. The worst part, was almost over.
After the last phone call, my sister and I decided to wander through Downtown Chicago. The Magnificent Mile, Michigan Avenue, was calling our names. Our mother kept us updated as we left the hospital to explore, and for me, to relieve some of the stress. Later on that afternoon we had lunch with a friend who lives there, and that helped get me through that day, with a legitimate smile on my face. Finally we made our way back to the hospital and met my father in the ICU Recovery, he looked like a completely different person. It hurt to look at my father.
Throughout the day I had been keeping in touch with Dilyn’s mother. She’d been giving me updates about him and I was updating her about my father. Dilyn finally made it out of surgery with only minor complications during the procedure.
Over the next two weeks, Dilyn changed quickly. His body lost the yellow color, and his strength was developing better than expected. He was moved from Intensive Care to the regular portion of the Children’s Hospital, from there to the Kohl’s House and finally home all quicker than expected.
He just celebrated his 9th birthday and you could tell it was emotional for his parents. Their little boy, who wasn’t expected to live to see 9, celebrated it at Cracker Barrel with a caramel sundae and lots of smiles. Others dining that night will never truly understand how important that single day was to him, his family and after this, to ours.
Dilyn and my father will always share a unique bond. Something given, a gift, completely selfless... this is why my father is my hero.
I hope that by sharing this story, and by reading the actions of my father, you've been inspired. We've only got one life, time is precious.