What It Means To Be A Parent

Usually I blog about being a doctor or being a mom (I didn’t title this blog "Doctor Mom" for nothing), but I take exception for exceptional circumstances. Today’s blog is about parenting… PHENOMENAL parenting, but not by me.

I haven’t written about this because it’s not something that can easily be summed up in a blog entry or two. For the last 8 months, our thoughts and prayers have been with the Fish family, who’ve been going through very difficult times, to say the least. Fish is Dan’s oldest and best friend. (Here are Dan and Fish with their new babies, Graham and Ian.)


Fish’s oldest son, Kyle, was 5 this past May when he was diagnosed with Myelodysplastic syndrome with monosomy 7, a rare form of leukemia. Sine then, their world has been turned upside down. We’ve been following along vicariously, trying to empathize but not really being able to even fathom the hell of having a child get so sick.

There’s no bright side to the situation, even for me, a glass-half-full kind of person, but there is a lot of inspiration in the way the Fish family fought so valiantly – inspiration about the phenomenal strength of little kids and the true devotion of parents.

After being diagnosed, Kyle was rushed to Yale and then spent May through December in the hospital, first at Yale and then at Duke, after Fish’s relentless search for the best care for Kyle’s condition led him to doctors in Durham. The feedback from his medical staff was that there wasn’t a stronger child than Kyle. He was a model patient. I’ve seen grown-ups melt down over a needle-stick, but not Kyle. He underwent what seemed like umpteen million medical procedures (some so uncommon that even I had to look them up) with more tenacity than the bravest, toughest man. Fish, ever the golf fanatic, said he couldn’t have been more proud of Kyle, "even if he won the Masters, US Open, and the British all in one year." It’s hard for me to even type how Kyle’s battle ended, but sweet little Kyle died late December after the most valiant of fights.

The reality of losing such a pure and innocent child who, as his father told us, just wanted to make it downstairs to the gift shop, literally makes me sick to my stomach. I thought being a doctor and dealing with death at work made me strong, but I’ve never had this same kind of visceral gut-wrenching reaction at work… Partly because, no matter how moving the circumstances, I’m always the doctor… And partly because I see my patients for only a handful of hours on one given day in the ER and don’t have the same degree of emotional investment. When it’s personal it is infinitely more devastating. I think about Kyle every day. His fight inspires me to live in the moment and to appreciate every single breath. Needless to say, I’m giving Cole and Graham many more hugs, kisses and snuggles lately, inspired by Kyle.

I also think about Kyle’s parents every day. What they have done the last 8 months has been a beautiful example of parental love. There can be nothing worse for a parent than not only losing a child, but first watching him suffer, not knowing if he can ever get better. Yet they somehow stayed strong, because their baby needed them. Every time I talked to Fish throughout the last 8 months I was overwhelmed by his strength. I must have said to Dan more than 100 times, "Fish is a Rock." If you believe people are defined by how they deal with adversity (which I do), then Fish has shown himself to be a pillar of strength and love.

From the moment Kyle was diagnosed, Fish put all of his New York-style pushiness to good use. If there’s anyone more aggressive and more outspoken than Dan, it’s his best friend Fish. When we first heard of Kyle’s illness, one of our first responses was that Kyle was lucky to have Fish as his advocate, because if there was any possible way for Kyle to get better, Fish would make it happen. As expected, Fish went on a relentless search for the best doc with the best track record for Kyle’s diagnosis, which was how Kyle ended up at Duke. Fish then left his home and his support network in Connecticut behind, moved to Durham into Kyle’s hospital room, and rarely left the hospital until Kyle died. It was Fish who was keeping the doctors on their toes and speaking for Kyle when he couldn’t speak for himself. I know this helped, because I’ve been the one on the other end having to deal with concerned and over-attentive families of patients, and I know that if a doc has 10 things to do (in the absence of any medical reason to prioritize), she’ll take care of the most vocal people first to get them off her back. Thankfully, persistent Fish was probably one of the squeakiest wheels that hospital ever saw.

The real reason Fish never left Kyle’s side, though, was because all he wanted was for Kyle to enjoy his time in the hospital. He gave up everything else (probably even eating, as evidenced by his new 30-lb-lighter physique) to be there playing games on the computer, drawing, going to activities (art, science class, bingo, etc.) Dan was able to get to Duke several times and always said that Kyle seemed like a normal kid – happy and playing—thanks, for the most part, to his devoted Dad. And then when Kyle got too sick to play, Fish was there remaining optimistic and keeping Kyle surrounded by the positive thoughts he needed. Fish was a rock.

Meanwhile, Donna (Mrs. Fish) was back and forth between CT and NC taking care of their second son, Evan, and GIVING BIRTH to their third son, Ian. Yes, that’s right… Donna was late in her pregnancy when Kyle was diagnosed. (As was I; and, needless to say, it gave me a lot of perspective about what REALLY constitutes a rough pregnancy and significantly curbed my own pregnant whining.) Throughout the 8 month ordeal we didn’t keep up with Donna as much as we did with Fish, but she made a huge impression on me in one single day with what she found the strength to do at Kyle’s funeral. In the middle of the ceremony, in front of a huge church-full of 5 or 6 HUNDRED people, Donna got up in her orange (Kyle’s favorite color) sweater and spoke for Kyle. It was amazing that her legs even carried her up there. The second she stood up several people around me gasped in disbelief. It was more amazing that she got through her entire tribute with only one little crack in her voice at the very end. She and Fish had asked several people to speak, and each one declined for fear they wouldn’t get through it. But Donna had no fear. He was her baby, and she was going to speak for him if no one else would. Her display of maternal love touched me so deeply that I will never forget it.

Kyle’s funeral was 2 weeks ago today. It was an unspeakably hard day. The Catholic Priest did say one thing that provided some comfort – when children die they automatically become Saints. So Saint Kyle is now up there watching out for his amazing Mommy and Daddy. They need his help right now. I cannot imagine their overwhelming grief. I know, though, that years from now as they heal more and more, they will look back and be proud – proud of themselves and their inspirational devotion as parents, and especially proud of Kyle.