By Kevin Ryan
Posted on December 24th, 2017
We live in Shaver Lake, California. Fresno is an hour drives away and I make the drive there and back every week or so for shopping or various Aidan medical appointments. Sometimes on the drive I’ll listen to local talk radio, sometimes to Great Courses lectures, and sometimes I’ll listen to music. Anyway the drive each way gives lots of time to thinking about stuff. I kinda like to think. I guess it is innate to my nature. A few weeks ago we drove down to my sister’s for Thanksgiving with my parents, brothers and sister and their families. I started thinking, “What am I thankful for?” Funny I’ve never really thought about that before.
I’ve been so busy lately (work, work, and work) – more busy than I’d really prefer to be – that this is the first time I’ve had to put those thoughts down into words. This should be short (I hope because it is late and I’m tired).
Aidan is alive was the obvious answer for what I’m thankful for. All other concerns shrink before that history of stress/concern/worry that we went through for a few years (and still do occasionally). But what also occurred to me was a person who recently has taken a very powerful office. It was in the 1990s that I read (I think in First Things magazine) that this person seemed to be the antithesis of “Love people, use things” – ie he seemed to be about “Love things, use people.” It struck me a true back then and still does. I don’t think I’ve ever discussed my politic and policy thoughts before; and I still haven’t here, regardless of what I think of this specific guy. Decency matters. if I gave you 4 guesses as to who I voted for in the last Presidential election, you most probably won’t guess correctly. My vote is more precious to me than to those who want it. I’m drifting off topic here – but “Love people” is what stuck in my mind.
So, back to my thoughts as I was driving to Fresno. People matter. Anything that I am thankful for has at the very root cause one thing: people. The next thoughts were to specific individuals that I’ve been blessed enough to have come into my life. And I’m driving and thinking; some songs are playing in the background; and a couple of people from the last year came to mind.
One is a person who lived halfway around the world, who then moved close enough for me to have a drink with, to meet his wife (went to my college at same time as me – we never met that I know), and meet their kids (met their dog too). To hike with. To talk about serious and not serious stuff with over an ale. What can be better?
And the other was a former work acquaintance who became a good friend over the last year. Decent, smart, integrity, fun. With her various thoughts, crafts, and activities, she is probably the most impressive person that I have ever met in my life. Blessed is probably an overused word, but it is truly how I feel so many times. Like there is Someone out there looking out for fragile me and bringing special people into my life to smooth the path.
This post is already longer than I wanted it to be. If in the off chance you happen to stumble upon this blog post and think I’m talking you – yes I am – thank you!
Treasure the decent people in your life because they are the only treasures that matter. And they are eternal.
By Kevin Ryan
Posted on March 14th, 2017
I’ll Remember You is a Bob Dylan song. Some of the lyrics have been going through my head the last few days. Quite a few years ago we lost one of our children to an ectopic pregnancy and then later, twins to a miscarriage. It hurt. It is a pain that seared at first. It eventually turned into a dull empty ache. Even years later. Someone is missing. I’ll remember you my little ones. I loved you. I hope one day to finally meet you.
My dear sweet friend lost her child to a miscarriage a week and a half ago. Not an hour has gone by since I heard that I haven’t thought of her and her precious child. “God please give her the comfort that she needs at this moment.” She is an inspiration and I wish she didn’t have to walk down this painful path.
Grief is a strange thing. It moves on its own timetable. It doesn’t move on yours or how others want to tell you it should. It’ll come in for a visit for an hour or a day whether you want it to or not. It is individual to you and there isn’t really a good or bad way to deal with it. Well, you probably shouldn’t deal with grief by dressing as a giant tomato, driving to Los Angeles, and hitting random people with a fake fish while shouting, “I’m Queen Elizabeth, bow before me!!” This would be counterproductive as I sadly learned… no… not really… I didn’t do that. I guess what I’m saying is you don’t have to deal with grief and fear in one specific way.
“When I’m all alone, in the rain and snow, I’ll remember you”
It was a very strange feeling to go out in public when everyone is normal and you felt anything but normal. I can remember visiting the playground in Golden Gate Park just below UCSF when we first got out for an hour after Aidan (he is our son that we almost lost a few times) had stabilized to point where he wasn’t likely to die in the next hour. It was surreal. It was loud and noisy with playing children and lots of people, but you felt completely isolated and alone. Hard to explain. If you have seen The Hobbit where Bilbo puts on the ring that is how I felt. The whole world seemed blurry, out of focus, gray. We were alone in a crowd. When we lost our twins I was able to stay at home for a few weeks. It made things easier, not having to go out, but made my Mom (and maybe other family members) nervous about our emotional state.
Deep breath. Gonna rush through this. My wife was 20 weeks along when she went in for her normal checkup with the doctor. The doctor couldn’t hear a heartbeat. She got a shocked look and turned a little pale. She immediately sent us to a specialist ultrasound place. And you are thinking on the drive over there, “Did we lose our baby?” You know. But you still hope. She uses the ultrasound equipment for a bit. “I’m sorry… I can’t hear a heartbeat.” Pause. Pushes a box of tissues my way. I think “Oh, she’s prepared” through tears. Think of the others she’s had to do this for. Drugs to go into labor. Delivery. Time with our little ones. Two boys. I weeped beside you. The hospital staff was empathetic. We are able to get our boys released to us.
I got the best quality wood that I could find. Created dovetail joints for all six sides of the small box. I’ve always thought those joints just look so nice. Sanded it smooth and stained it. Made it as perfect as I could. It was the only thing that I could do for my twins. They are now safely resting in a place that I can see everyday. They are where the wind blows through the pine woods.
I was thinking you can draw a line between the you “that was before” you lost your child and the you “that now is” afterwards. But it’s not a line separating the two yous, it is a huge chasm. You are different. Eventually you are normal again, but a different type of normal. “Our children change us . . . whether the live or not.”
I was never angry. It’s okay to be angry. My Grandpa used to take me fishing in the mountains all the time. We’d also go through the forest wilderness with hatchets and get grub from old fallen trees for bait. He did cattle drives into Yosemite when young, was used to the mountain wilderness, and so passed on that sort of knowledge to me. One time he took me deep sea fishing. I got seasick. He didn’t. “Hoo, boy, that’s too bad. Never bothered me,” he said. Some people get seasick and some don’t. It’s innate. I think how you deal with fear and grief is similar. It is just how you are built. There is not “right” or “wrong” way.
It would be nice to live in a world where Rachel didn’t weep. But she does. The other untold part of the story is that her husband weeps too. And her friends too for her. Just like I do for my Eugene friend. The years will roll along and I’ll never forget my children. Or hers. They are in my heart eternally. And I have hope, because one day what is lost will be found.
I thought this was a beautiful version of Bob Dylan’s song.
By Kevin Ryan
Posted on October 31st, 2016
“You don’t have to write big long blogs posts, you can write short ones.” That is what my wife, Willa, told me when I was having problems writing a new blog post each week. It’s hard to even write just one a month. I think sometimes I just ramble and ramble and ramble on and on and on.. So, taking her advice, this will be an attempt at a short post. And since I am currently reading a Hemingway novel, I’ll try to write in his style too (and won’t succeed).
Aidan was released from the hospital on Oct 29, 1999. He had had a liver transplant four weeks earlier. He was in his car seat hooked up to oxygen. He was fragile. We were driving to our San Francisco apartment. We had the brand new Crosby, Stills, Nash, and Young album playing on the CD.
“I am already your best friend… who can you completely trust, who loves you baby, who loves you this much” – Faith in Me (Stills)
“Looking forward, All that I can see, Is good things happening to you and to me” – Looking Forward (Young)
“Someday soon you will see by the light of day, That someday soon all your worries will fade away, Keep holding on to the love that has made you strong, And someday soon heartache will all be gone” – Someday Soon (Nash)
From my perspective, driving that short trip from hospital to apartment, every one of those songs seemed to be written for Aidan. Especially Someday Soon. I later discovered that it was recorded on July 24th at Neil’s ranch. That was the same day that I was driving past his ranch on State Route 85. I was getting a cashier’s check from our home bank for a who-knows-how-long stay at a San Francisco apartment.
Before Aidan was released I had to get a prescription for him. For some reason I couldn’t get it at the UCSF hospital pharmacy. The closest pharmacy was in the Castro district. I drove over there in the evening with my three year old son to pick it up. It was Friday evening before Halloween and there were some very interesting costumes being worn. We parked and walked a couple of blocks to the pharmacy.
I gave the pharmacy guy Aidan’s prescription. It was a methadone taper to wean him off of morphine. It was a very tiny amount that tapered down to zero in a couple of days. Aidan was a very tiny sick baby. He didn’t need much. The pharmacy guy looked puzzled. “Is this for your hamster?”
Yes, he actually said that. It still makes me crack up 17 years later. “Uh, no, my son is tiny.”
On October 31st we rushed Aidan back at the hospital. It turned out to be for another very long stay. His eyes were sundowning. He was not able to regulate his temperature. His temperature was falling low which was really strange.
It was hydrocephalus. The hospital folks knew right away from the sundowning eyes. He got a shunt and our voyage continued.
By Kevin Ryan
Posted on September 30th, 2016
It was 17 years ago today, September 30th 1999, that our son, Aidan, had his liver transplant surgery. He was 2 days short of being 4 months old. We heard earlier in the day that a donor liver had become available and the surgery was scheduled to start in the evening. We brought all our other children in with us to visit with him. Just before they were going to take him off for the transplant his heart stopped. My wife said, “I think Aidan is dying.” I will never forget that moment. Hits you right in the heart – hard.
While the medical team worked on getting his heart going, a nurse shuttled us into an office right next to the NICU on the 15th floor of UCSF. The nurse took us to small visitor room first. “Can you please leave?” she asked the 3 people in there. “Why?” the guy asked. “We have a family in crisis.” They didn’t leave so the nurse took us across the hallway to a doctors office. We followed numbly and sat on the floor. My wife was inconsolable. We were scared the surgery would be canceled. We had walked with Aidan through 4 months of very tough times (this wasn’t the first time his heart had stopped) and it looked like all our hopes were going to disappear.
The surgery wasn’t canceled and he was wheeled past us soon afterwards on his was to transplant surgery and we were able to say goodbye and that we loved him. They set up an impromptu place for my wife and kids to sleep and I went to the visitor room on the 6th floor near the NICU to wait for reports from the surgeon. Aidan was taken off for the transplant around 7 pm and the surgery lasted until 6 the next morning. The transplant surgeon, Dr. John Roberts, would come in a give me updates as the surgery progressed. And then I would walk over to where my wife was with the kids and give her an update.
Aidan was very sick immediately post-transplant. We heard that his evening nurse came to see him and started crying. He was in bad shape. It was obvious the next evening that something was very wrong. His blood pressure was dropping and they were pumping blood into him. I stood there with my wife for hours, my arm around her shoulder, just watching – rooted to the spot – helpless. I remember seeing the blood pressure number drop down to around 30. The nurse was pumping blood into him by hand from a very large syringe into the tubes. I remember her rubbing her arm because it was getting sore.
At one point a large amount clear fluid suddenly poured out of Aidan’s mouth and nose. My wife and I gasped. They said, “No no, its okay, he’s still here.” A little after midnight the whole liver team was there and Dr. Roberts took him back into surgery. The anesthesiologist was also there. He must have been in his mid-60s and was legendary for how good he was. I remember him as a very gruff older guy. When they wheeled Aidan off for another surgery to figure out what was wrong, I saw him gently pat Aidan on the head and whisper, “Don’t worry sweetheart we’ll take good care of you.”
In this follow up surgery they found bleeding and fixed it. He ended up needing two more surgeries in the next couple of day to solve his immediate post-transplant problems. So we were there standing next to him in PICU around midnight the next night as they took him off for emergency surgery again. He needed a 3rd follow up surgery the next night It was three late night surgeries in a row.
At this point we settled in for the wait to see if rejection would occur and hopefully move on to a normal post-transplant life. At first his color returned to normal and things were going well. But he ended up having a long string of various medical problems – some minor – some major – all scary. I’m not going to list out everything, but it was another five years of bad stuff happening. A month and a half after the transplant he had an “event” in November that affected the left side of his body and also his cognitive abilities. It was five years before he finally got past having periods of long hospital stays.
Other Stories and Kids
When you are living in the hospital for large parts of five years you see many things. When Aidan was having his brain surgery I spent a month with him in the PICU. There was a 11 year old boy from Africa there at the same time. He moved in the PICU bay next to us – all the walls are glass. He was not too bad and then something happened and suddenly he was in very bad shape. When he was off to surgery, his nurse started hanging up equipment in his room like he was preparing for war. Over the next couple of hours all the other nurses stopped by and told him to let them know if he needed any help. There was a real sense of camaraderie. I don’t know what happened to that boy. I never asked.
Pre-transplant I was in the snack room that the nurses let us use on the 15th floor of UCSF. There was another Dad in there whose child was in the NICU too. One of the long term stays like us. He talked a lot and I just listened. He had to unburden himself from all the stress he was feeling. He talked about future plans for his child. Sometimes people just need to you to sympathetically listen to them. We asked later and found out his child had eventually died.
When Aidan was more healthy he would stay in a regular room in the hospital instead of the PICU. I was staying in his room with him about 10 months post-transplant when he was in the hospital for some bile duct surgery. Our room was right next to the nurses station and there was a 15-year old girl who would hang out there talking to the nurses. She would lend Aidan her tape recorder. We had recorded our kids talking to Aidan or reading him stories and we would play the tapes for him. When Aidan and I were back for another stay a few months later I was talking to one of the managers of that floor, a friend, who looked and sounded just like Morgan Freeman. I asked about the girl and found out that she hadn’t made it. This made me reluctant to ask about other kids in the future. It hurt.
Soon after we first showed up at UCSF there was a family we met. This when things had calmed down just a little for Aidan. By calmed down I mean he was day-by-day instead of minute-by-minute. When we first got there Aidan was minute-by-minute for the first few days. He could have gone at any moment. We didn’t leave the 6th floor. Anyway the boy in the other family needed a bone marrow transplant and eventually got it. It must have been a year or two later and we were at UCSF with Aidan across the street from the main hospital for a clinic visit. And sitting there was this 14 year old boy. We heard his first bone marrow transplant failed. He was just sitting with eyes not focused on anything and looking way too old for his age. I really really hope he made it.
When Aidan was about 2 years old I was pushing him around in the stroller and was going past the PICU. There was a lady there whose young nephew had just been admitted to the PICU with acute liver failure. I think he had ingested the wrong thing. I told her Aidan’s story and how far he had come. She got down on her knees and looked at Aidan with tears streaming down her face. Writing this brings back the emotions that I felt at the time. As I looked at her gently talking to Aidan, I realized that he was a living symbol of hope.
I think it was around 3 years post-transplant when we met the family from Afghanistan. They had had a very eventful life. Their baby needed a liver transplant and the transplant happened while I was there at the hospital with Aidan. I talked to them quite a bit both pre and post transplant. Their baby had post-transplant problems like Aidan. I talked with them about our path – hope. Later on the transplant coordinator told me, “they really really like you.” That made me feel good that I was able to slightly ease their burden.
A week before Aidan had his transplant we were just in a holding pattern waiting for a donor liver to become available. I was stopped at the light on 19th and Sloat avenue in San Francisco driving back to our apartment next to San Francisco State and I started thinking about the donor-to-be. That kid was most likely somewhere playing right at that moment. It was a sad feeling. A week later Aidan received his liver from a 7 year old Hispanic boy from the Central Valley of California who was hit by a car. His parents gave us a gift beyond measure. They are often in my prayers.
I’ve kind of rambled on here. This anniversary day always brings up a strange mix of emotions. I’m acutely aware that I could be visiting Aidan at a graveyard. But I’m not. He is up in Eugene, Oregon with me today. He is my buddy. Cognitively he will always be around 6 years old. I took this photo of him this afternoon taking a nap next to me. Life is good.