On expectations, disappointment, hope, and parenting

Life sometimes throws you curveballs when you least expect it. This blog normally doesn’t address said curveballs unless they happen 30K feet in the air or in a different country. But when life threw us our curveball, it came in the form of polydactly for our third child. I scoured the internet looking for encouragement, similar experiences, and answers, but came up almost empty. So, if you’ll indulge me, I hope people who may need it find this post and find it encouraging. At the very least, hopefully any of you who are parents can relate to some of the stuff I share.

Now I don’t want to bury the lede, everything has for the most part worked itself out – I had played around with the idea of writing more “live” updates, but ultimately decided against it. So this post has been six months in the making and is a lot of rambling. Feel free to ignore. 

Update Feb 2023: In case anyone happens upon this, it’s been almost five years since our daughter had minor surgery (general anesthesia) to remove her extra digits. She is healthy and well and we are so thankful – rereading this post five years later reminds me of all the anxiety and worry we had and how we take for granted the relatively easy times we have now. Parenting, amirite?

Expectations and surprises

I should start by saying, Jess and I feel lucky and blessed. There was a time when we weren’t sure whether we would have any children, and now we have three for the most part wonderful children. (Like all children, they can sometimes be turds.) Conceiving and the expectations around having a family are incredibly stressful in and of themselves, and while we’ve personally been there, that’s not what this post is about.

By the time we decided to go for a third child, we were already at peace with our family as is. In fact, I thought it pretty likely that we might not conceive, and I was okay with that. Of course, like I said, life throws curveballs and all of a sudden we were expecting way ahead of schedule. Everything was awesome.

Our baby passed some initial blood tests and so we cruised into our ultrasound on May 22. It’s tough to explain how awesome life was felt walking into the hospital at 9 AM that morning. My plan for the day was to see my baby, have a nice lunch with my wife, and then fly to Disney World for the Traveling Dad retreat and Pandora grand opening media event. #blessed, as they say.

The night before, I joked with Jess that as long as the baby had ten fingers and ten toes it’d be all good.

Woops.

I literally fell asleep for two minutes during the ultrasound. Seen one ultrasound, seen them all. (To be fair they measure the head size for a long time). But at some point I opened my eyes and blurted out, “That looks like a lot of toes!” The technician didn’t say anything but I started to have a sinking feeling in my stomach.

About twenty minutes later, the doctor came in and matter of factly said, “The technician said you noticed extra digits on the baby. I can confirm that she has four extra digits, one on each appendage, pinky side for all.”

The next hour or so was a blur. We went to speak to a genetic specialist who said that polydactyly, the medical term for extra digits, could be associated with a whole other host of genetic issues or defects. We answered the question “Is there any history of this in your family?” about ten times. (No, there isn’t.) 

They asked us if we wanted to do further genetic testing on the baby, but when we found out that there was little chance we’d find out any actionable intel, we declined it. 

I’m not sure how to describe how I felt that day. If you are a parent, you probably know the feeling. It felt as if I had been punched in the gut, and not in a “Mets lost the World Series” sort of way, but in a “Holy crap the rest of our lives might not be what we expected” sort of way.

That punch in the gut evolved into a litany of fears and questions. What if the baby has other issues? Will she have a difficult life? How will that affect our other children? And on and on and on…

Mourning our expectations

We cried a lot that first week. Babies are so innocent and vulnerable, it broke our hearts to think about any extra pain, suffering, or difficulty our child might have to endure. What happened over the next couple months, I now recognize as mourning our expectations.

When you conceive, you expect that you will have a perfectly healthy child who will be a blessing to your family. Sure, you may be afraid something might be wrong if you’re pessimistic like I am, but deep down you expect everything will be okay.

Well, when we found out everything was not okay, it sent me into a bit of a tailspin for awhile. I ended up going on the Pandora trip a day late, but the whole time I just couldn’t get over the fact that our daughter had tetra-polydactyly. I mean, there is so much to worry about.

Will people look at her weird?

Will I look at her weird?

What if she has those rare genetic diseases?

If she has surgery as a baby, what are the risks associated with that?

So yeah, I cried a lot. We cried together. We cried with friends and family. 

Slowly, but surely, we mourned our original expectations for our child and gave them up to God. Slowly, but surely, we reminded ourselves that she was our daughter and we would love her no matter what. And slowly, but surely, we resolved that like for all of our children, we would do the very best we could for her as her parents, regardless of what might come. We prepared ourselves for the fact that our lives might be far different from what we may have envisioned, and that would be okay.

There were three major turning points that got me right, personally. The first was a Bible verse I heard not long after we found out: “People look at the outward appearance, but the Lord looks at the heart”. To be honest, when I heard it, I still wasn’t ready for that message – I can’t explain just how gutted I was about the whole situation at first.

Secondly, I found a Facebook group with parents of polydactyly. It was the first time I ever thought the existence of Facebook was a good thing. It really comforted me to hear the stories of other parents, even the tragic ones. As I shared these stories with Jess, it made us feel less alone. Although the group was only 250 people, we knew there were others who had gone before us. (A single extra digit happens about 1 in 10,000 babies, but tetrapolydactly, all four, is incredibly rare).

And the final turning point for me was a conversation I had with my daughter over the summer. We decided not to tell her beforehand, so she had no idea what was going on. But one day I was driving her home for school or going for a walk or something, and she said to me, unsolicited, “When the baby comes, she is going to be perfect. Just perfect.” From the mouths of babes.

A quick aside

A quick aside, because I don’t know where to put this, but even though I’m generally a sharer, I quickly stopped telling people about our situation. I just felt like I couldn’t handle people’s responses, even though they were all so sincere and kind.

“I’m sorry” just sort of rang hollow for me. I also felt bad putting people in the situation where they had to think of something to say, so I just avoided the situation altogether. 

It also got super weird when people were like “Congratulations you’re having a baby that’s so exciting!” and part of me wanted to be like “Well, actually…there are some minor and potentially major issues so let’s just hold off on the excitement.” Anyway, the whole thing was just weird and difficult, so I just stopped sharing. If this hadn’t happened, I probably would have been talking about how excited I was over social media all summer. (And I was incredibly excited after I had finished processing the situation!)

Hope and parenting

While we mostly came to peace with everything before the baby was born, obviously our fears crept up from time to time. Waiting is so hard, especially if you don’t know exactly what’s on the other side.

But in the end, the whole polydactyly thing just reminded me that this is parenthood. You do the best for your kids with the things that you can control. You hope for the best for your kids when it comes to the things that you can’t. And if things don’t go according to plan for the things outside of your control, you loop back around and do the best that you can for your kids in those difficult situations.

Thankfully, when CC was born, she didn’t seem to have any issues outside of the extra digits. But even then, we had to decide how to handle them, should she keep them, should she have some removed in the nursery, should we schedule her for surgery as a baby? All tough, soul crushing decisions if I’m being honest.

And we made some decisions, and some things went wrong, and so we looped back and made some more decisions. We’ve been to the doctor more in the first week than we had been for our other kids, but that’s just the new normal. There are no do-overs in parenting, so we’re just doing the best we can and hoping for the best.

I expect plenty more heartbreak and stress as our kids grow older. I never understood until I was a parent just how much you get wrapped up into this thing that is your child. You want to protect them forever but ultimately they’re not yours to protect. And ultimately, it is a privilege and a blessing to be a parent, full stop. 

So yeah, life is going to throw a ton of curveballs, and you probably won’t be ready, as a person or as a parent. You just gotta make up your mind, take your swing, and hope for the best. That’s what Jess and I aim to do from here on out.

Note: If you’re a new parent of a child with polydactyly or just want to reach out in general, please feel free to contact me any time via e-mail (asthejoeflies@gmail.com) or Twitter. We’re all in this together.

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