By John Duff

John & TeaghanI knew pretty early on that I wasn’t destined to be the World’s Greatest Dad. It was kind of obvious that I lacked the patience, the creativity, and the energy to really take it to the next level. When left to my own devices to entertain my daughter Teaghan as a toddler, my go-to move was to suggest a game I’d invented called, “Mommy! Daddy!” which involved one player, the “child”, lying on the couch while the other player, “the parent”, tried to get them to fall asleep. The genius of the game was that Teaghan always wanted to be the parent. Which meant I was always the child, lying on the bed trying to fall asleep. This played to my obvious strengths.

This may not seem like much of a game, but there was added drama when the child went to great lengths to draw out the bedtime process (turn on the nightlight?, extra stuffed animal?, turn off the hall light?, “What’s that noise?”, song requests, etc.). If I played my cards right I could not only lie down for a good 45 minutes, but I could also get my daughter back for all the times she had asked for “one more” glass of water.

There are moments in my parenting career that will stick with me forever I think. Not because I particularly shine, but because they strike me as moments when my role as a father and my thinking about parenthood changed.

One such moment: I’m walking out of the Beverly Birth Center after the birth of my second daughter, Talia. I have to check in with Teaghan and my mother-in-law, and grab some supplies as they’ve asked us to spend the night in the hospital. They want to keep an eye on Talia because she has Down Syndrome. Jocelyn is distraught, stressed, angry. I am…calm. Down syndrome? This is totally in my wheelhouse. I have had years of experience with children, athletes, teens, and adults with developmental disabilities. I may not be the World’s Greatest Dad, but Down syndrome I felt I could handle.

Of course, being a parent of a child with Down syndrome (and additional medical challenges) proved more complicated than I knew in that sweet, naive moment, but at least for the time being I felt like the universe had brought us together for a reason. What Talia needed, Jocelyn and I (and Teaghan) could provide.

Dance RecitalIf you had told me then that one of the biggest highlights of my early parenting career was going to be a dance recital, I couldn’t have been more surprised. I was never much of a dancer and I certainly wasn’t interested in sending my kids to dance lessons. But our town has a great dance studio with an amazing dance teacher. So your kids dance. When it was Talia’s turn to enroll, she was welcomed warmly even though she could not yet walk independently. We planned on attending with her and would hold her hand or prop her up as necessary. We were certain that she was close to walking and the extra exercise and movement would help speed the process. She had been making incredible strides and surely by the end of the year would be ambulating on her own.

Unfortunately, as we approached the end of year recital, she still wasn’t walking on her own. At that point, we couldn’t imagine not having her participate in the end of year show, so I signed on to assist her. That year’s recital included a middle-aged man in black trying to look inconspicuous amongst a sea of tutus.

Prior to our second year of dance it was clear that Talia’s walking challenges went beyond Down syndrome. We took her to Children’s Hospital for an overnight and a more thorough work up. It was scary and stressful and difficult to explain to a young girl. I’ll never forget trying to comfort my daughter while holding her still on a table so they could insert a large needle in her and draw fluid from her spine (me, a guy who used to get woozy around needles).

Singing You Are My SunshineBack in her room recuperating, a visiting doc came by dressed as a clown and I sat in Talia’s hospital bed with her in my lap and the three of us sang You Are My Sunshine while I imagined what it was like to outlive your child. She was my sunshine and I couldn’t imagine not having her in my life. But that’s what I was forced to face. Driving home that night to check on Teaghan while Jocelyn stayed overnight with Talia in the hospital, I had flashbacks to that night she was born, this time with far less confidence. How was I going to make this okay for my children, to somehow convey a feeling that everything was going to be all right?

Talia backstage at the dance recitalJocelyn and I were relieved, at the conclusion of that visit, to be given a diagnosis that we thought we could treat. We decided to participate in another year of dance, but the widening gap between Talia and her classmates was a depressing reminder of what we were fighting. As the months went by it was clear that Talia wasn’t responding to treatment like other patients were and that things might get worse before they got better. The end of year recital was as exciting and fun as the year before, but bittersweet as well. It would be our last recital together as by the start of the next season her physical limitations were worse and the gap between her and her peers was dramatic.

A more recent fatherhood memory is of Talia with a bag of cashews. We (Jocelyn, Teaghan, Talia and I) are in Reading Terminal in downtown Philly — a foodies dream full of incredible shops and vendors and culinary delights. We had come to Philadelphia to get a second opinion at CHOP (Children’s Hospital of Philadelphia). It is after our visit with the doctor and I am not entirely sure what I’ve heard, but I’m pretty sure the doctor has reviewed her history and her file and has just gotten through telling us that in all likelihood Talia has been misdiagnosed. At the very least, there has been a missed diagnosis, in all likelihood another genetic disease. Probably rare, untreatable, and life-threatening. I say I’m pretty sure I heard this because I didn’t follow up with what may seem like an obvious question because sometimes you don’t ask questions you are not ready to process.

After all, I argue with myself, the doctor was just speculating and nothing would be certain until we had time to do further genetic testing. We still really didn’t know if we’d spent the last six years treating the wrong thing and kidding ourselves that our daughter’s health was getting better.

I was alone with these thoughts, unfortunately, because Jocelyn and I hadn’t had a chance to debrief without the girls around. Not only had we not had a moment alone, but we still had some time to “enjoy’ Philly and a seven hour car ride to look forward to. I wasn’t sure I wanted to spend all that time brooding. Jocelyn seemed equally pensive but not entirely distraught, so maybe I had misunderstood. Or maybe she had missed what the doctor was saying?

The girls seem happily oblivious. Talia was enjoying zooming around Reading Station, delighting in the sights, smells, and sounds and considering the possibilities when told she could pick any one treat to get. After doing several laps of the vendors together, she settled on cashews. How in a sea of treats, sweets, and culinary extravagances did she arrive at a bag of nuts? I have no idea. It could have been the smile of the vendor, the sight line with her chair, a whim based on the fact that it was her choice and she could choose whatever she damn well pleased.

Talia and her cashewsShe carried those nuts around Reading Station like they were the Queen’s Jewels. She could not have been happier with her choice. While I agonized (Philly Cheesesteak? Frilly cheesecake?) over my selection and pushed other thoughts to the side (“Was he saying what I think he was saying?”), Talia clutched her cashews and sang happily. The kid knew how to live in the moment and I would have to follow her lead.

I’m not sure what this collection of memories says, except that you never do know. I can’t worry about being the World’s Greatest Dad and, thankfully, my kids have already learned to live with diminished expectations. Neither is expecting Patch Adams in the dad department; they seem reasonably happy with the best that I can manage. We settle on Teaghan’s Greatest Dad and Talia’s Greatest Dad and hope that I don’t do any lasting damage. And when in doubt, I just turn the parenting over to them and lie down on the couch.