Hi Bree. Welcome to your life. It might start any day now.

I should probably start by introducing myself. My name is Robin, but you can call me Dad. I’ll be one of your guides for this remarkable journey you are about to embark on. I don’t want to scare you too much, but Life, this experience you are about to start, it can be a bit of a roller-coaster and feel pretty intense. That’s why I’m here. And your Mom. And your Sister. And Grandparents, Aunts, Uncles, Friends, Care Professionals, and, well, a lot of people… When you do finally arrive here, there will be a large gathering of people holding signs and cheering you on, so don’t worry about feeling lonely. I know it can be a bit awkward coming to a new place where you don’t know anyone. I just wanted to start off by saying hi. 

Introductions can be a bit hard. You’ll find that most people here like to use these things called titles to make things easier, but to be honest, they’re kinda silly. If I were to introduce myself to you with my job title, I’d say something like “I’m an Education Experience Manager at a digital skills training school” and you’d have no idea what I was talking about. But that’s what most people think, so don’t feel too bad about that. Sometimes I use the title of “dad” or “father” because I think turning into a dad to your big sister, Shyla, has been the defining moment in my life so far. Sometimes I’ll skip titles and just introduce myself with things that I like, such as music, or books, or good food. But then I realize that everyone likes those things, so it makes me seem not too interesting and I’ll just get a little shy. 

When you do make it to Life, you won’t really care about any of that stuff though. My introduction to you will likely be through the touch of my prickly beard or the smell of my anxiety induced sweat. I’m not really great at first impressions, if you couldn’t tell. 

Rachael (you can call her Mom) has been doing what any good host does before their guest arrives. She’s been making sure that our place is ready for your arrival, clearing space and reorganizing to accommodate all your special needs. This is the tiniest example of how much her heart and mind are devoted to you. You might not realize it yet, but you’ve hit the parental jackpot with her as your Mom. And I don’t need to make any strong introductions between the two of you, as she’s literally been your home for the past 8 or so months on your journey to me. And while leaving her and entering our world might feel a bit discomforting, the string from her heart to yours will forever be unbroken, so don’t worry too much there, little one. 

I’m pretty excited to meet you. Like really excited. To be honest, there have been a lot of sleepless nights and daydreams thinking about the person you are. I remember the first time I heard you were coming into our life. Your mom gently knocked on my “office” door (which was actually our bedroom door, but we were in the middle of a pandemic, this germ-y thing that kind of turned the world upside down, but you know, we can get into that kind of stuff another time). I was so damn excited that day. Here is what I wrote before I went to sleep to mark the moment: 

“Today was the day I found out you exist. It was snowing all day. It’s December 1st. I’m on the couch in our apartment on Lowther Avenue. Shyla is overtired and throwing a tantrum in the bedroom while your mom is (attempting to) calm her down.  

Rach told me about you in between two work meetings (we both work at home right now – oh, it’s a pandemic by the way). When she told me I instantly felt a little bubble of energy in my belly. I guess that’s what you are right now in a way, just a bubble of energy. I can’t stop smiling since I found out about you. 

I took a long drive to pick up Twix (she’s our dog by the way) when I stopped working. I listened to some music (Tame Impala, Ben Howard, The Dig, and others). I thought about Shyla being a big sister. I thought about who you might be, what you might do, why you might be around. I thought about two kids running in our house. I thought about being a dad with adult kids, me sitting in a big chair, growing old, growing happy. 

I don’t know anything about you. I don’t even know if you’ll be here 9 months from now. But however tiny you are in this moment –  forming, growing, developing, being –  inside Rach, you’ve already lit a little fire inside me. 

I wanted to keep something on record. Today’s an exciting day. Today I found out you exist.“

I still think of that little “bubble of energy” you once were to the ripening little baby you are now. To be fair, we haven’t actually met yet, so it’s hard for me to really know how that energy manifested itself. But I can use your big sister as an example because she too was once just a bubble of energy inside your mom. And look at her now. 

Her name is Shyla and she is the self-proclaimed “silliest girl in the whole world”, a claim that no one can definitively dispute. At 4-years old she is a bike-riding, joke-telling, number-counting, spontaneous-singing, ice cream-eating wizard with a heart full of empathy and care for everyone around her. And beyond the hilarious conversations and wild running around that she does, she is an emotional and intelligent complex human that is growing and forming into this wonderfully interesting person. You’ll love her to bits (oh, and she’s super excited to meet you too by the way). 

But the point of this is that she too seemingly came from nowhere and got plopped down onto our Earth and into our laps. Where was that energy before? There is this thing called The Law of Conservation of Energy that says that energy can neither be created nor destroyed – only converted from one form of energy to another. So where did this life-force come from that formed into Shyla? Or you? 

Well those are questions that I don’t have an answer for. All I do know is that you are sailing quite quickly to get to us. And I want to make sure that you are prepared.     

I wanted to write something for you before you start your big trip. There is a lot to navigate here on Earth and it seems that an introduction to some of the things one might expect on their first visit would be a nice thing to have. Just knowing what to eat for breakfast might feel overwhelming, let alone trying to figure out the whole purpose of this strange place. 

So I’m here to teach you everything you need to know about being a human on this planet. But I’ll start with my first piece of Earthly advice for you: 

Advice #1: Don’t listen to anyone that tells you they can teach you everything about something. 

Oh no. I’m already contradicting myself. Now I should admit right off the start that I might not be the ideal guide. I actually spend most of my time out here either second-guessing my own navigation or aimlessly wandering around leaving a trail of mistakes in my footsteps. I have regrets about things I’ve done (and things I wish I did) and am still piecing together a map of my own life as I try and move forwards. 

But, (sorry to say) you are stuck with me. So I promise I’ll do my best, even if I screw up a lot of the time. 

And that leads to my second piece of Earthly advice for you: 

Advice #2: There are things in life that are in your control. But a lot that aren’t. 

This advice is something that I’ve had to struggle with a lot recently and is actually part of the reason why I’m working on this guide for you. Bringing you into this world was in our control, but the person you became was not. 

And the truth is that the person that you are will likely never be able to read this guide, or understand the stupid “life lessons” I’m tossing in here. This is no fault of yours, in fact it’s not really a fault at all. You are just made different from most babies. Quite literally. 

While myself and most others on this planet have 46 chromosomes in each of our cells, you have 47 of them (yes, you heard right, you’ve got more wonderful parts to you than I do!), specifically a third 13th chromosome. The condition you have is something called Trisomy 13 or Patau Syndrome (named after this doctor guy, Dr. Klaus Patau). 

How this extra chromosome of yours shapes the type of life you will live is still unknown to us. Likely you’ll look a little different than some and be delayed in the typical developmental milestones that others hit. Your life might be shorter than most, and you might spend a bit more time with doctors than others, but none of that makes your life any less interesting or meaningful. I could actually probably argue that your extra thirteenth chromosome in your cells makes you more interesting and meaningful. 

So, as I continue to grapple with this news of your diagnosis and wonder about the life you’ll live, I want to focus on some things that are in my control. And spouting out written nonsense into the world felt like it might help me. Which brings us back to this written nonsense I’m calling a guide.

Advice #3: Thoughts are like clouds. 

Alright, that was a dumb one. But I’ve never really been good at putting my feelings about your diagnosis into words so I’m going to try with a stupid analogy. 

Awaiting for the arrival of you has felt like a giant cloud has dangled above me in the sky for a while now. The cloud takes on different shapes – puffy circle-like balls, large grey storm-brewing structures, playful warping white cotton-candy things – and it’s always there, hovering over daily life. I take Shyla to daycare and there is the thought-cloud hanging in the sky. I’m on a work video call and the thought-cloud fogs up the ceiling. I walk Twix and the thought-cloud blankets the full world above. It’s always there up ahead, just sitting above the routines of the life I know now. 

I’ll be the first person to recognize that I haven’t always engaged with these thoughts and feelings in the healthiest way possible. When you know for certain that your life will take a drastic departure from its current path, you tend to want to stare out the window and not think too far ahead. Listening to true crime-podcasts, diving into work, reading blogs about NBA draft prospects, are just a few of the ways I’ve been attempting to alter time and close my eyes to that hovering thought-cloud away with a wilful ignorance. 

While I would not say that I’ve been pushing away thoughts about you, I haven’t always been actively pulling these thoughts in either. It can be overwhelming to think that you, my baby, so fresh in your pursuit of life, might only be graced with us for a short amount of time. 

That’s a hard thought to linger on. 

However, the good news is that your prenatal tests so far have painted a “less complicated” picture of what could occur in babies with your diagnosis. Ultrasounds have still shown some things typically associated with Trisomy 13: cerebellar hypoplasia, microcephaly, microphthalmia, micrognathia, and even a possible 6th finger (cool, right?). But we haven’t been able to see any major structural abnormalities and everyday that you are getting closer to full-term is further increasing your chances of living longer in life. 

I really want to get to know you. And get to know your “life-force”, the thing that exists in every person outside of the physical collection of cells. The thing that sparks conscious energy. The thing that is connected to generations of family history before it. I want to see how it manifests itself in you and how you experience the world through the very unique perspective you will carry. 

The thought-clouds of any baby are wonderful mysteries to us grown-ups. The way a baby looks at our world with the freshest pair of eyes and an evolving curious brain is one of the best sparks for an imaginative mind. Now your thought-clouds are a whole other layer of mystery that I can’t wait to explore. How your brain works, beyond the cognitive logical thought-words, and into the deep pictures of your feelings and “life-force” energy, will be one of my great curiosities. Like I said, I really want to get to know you. 

Advice #4: Enjoy your many superhero strengths like the power of innocence and simplicity. 

When you take the trip to Life and meet us, in some ways, your life will be more complicated than mine. That extra little chromosome of yours means that you’ll need extra little (or big) feats of support when it comes to living. In other ways though, your life will be pretty simple. Simple is not bad, in fact it’s quite the opposite. You’ll do what everyone else does to some extent: try to avoid pain and discomfort, while pursuing joy. And that’s going to be our goal for you too, so don’t worry, we’ll help make some decisions for you that move you closer to that objective.  

Every child starts out with this wonderful gift of innocence. Like you, most kids get to lean on their Earthly guides (A.K.A. parents) to help them navigate through some of the harsher realities that come attached to living on this planet. But however much those parents try to build evolving structures around their children, in an impossible effort to shelter them forever, kids grow and lose that innocence. There are these things in the world, such as social and economic pressures, embarrassment, egotistical drive, heartbreak, along with the larger global issues like poverty, climate change, war, and much much more, that you don’t ever need to worry about. While your genetic condition, Trisomy 13, means that you’ll be limited in your developmental capacities, it also means that you’ll be free from these emotional pains that cause a lot of grown-ups an immense amount of sadness. 

Your mom, myself, and everyone else that makes up your wonderful support system, gets to construct an impenetrable wall around you to these complex factors affecting most of our lives. Your perfect state of child-like innocence will be the only thing you’ll know, and we get to be there to protect you along the way.  

Advice #5: Life’s measuring stick isn’t counted in years. 

I don’t want to upset other grown-ups here, but most of them don’t want to hear the most basic fact of all life: everyone dies. Not only does everyone die, but when you contextualize our individual lives against the large scale of time, we aren’t here on this glorious planet Earth trip for very long. I won’t diverge into the details of the generational history of human civilization, or how many billions (that’s 1,000 millions in one billion, or in other words, a pretty unfathomably large number) of years Earth has been around, or how many billions of more years the universe has existed before that. Not to mention the billions more that are yet to come. A drop of history in a billion oceans large. And then there are our own individual lives pushed against the context of space, but let’s not put any other readers into an existential crisis.

The point being is that everyone’s life is short. But a short life doesn’t dissolve the weight of meaning that each life holds. Your life included. 

Legend has it that Ernest Hemmingway (he was this writer guy) wagered a bet with his writing friends that he could write a full novel in only six words. He wrote down the story on a napkin and proceeded to collect his winnings. Here is what he wrote: 

“For sale. Baby shoes. Never worn.”

I come back to this story a lot, as I’m in awe of the tragedy and provocation that is packed into only a few short words. The story unravels itself with a beginning and an end, filling the reader with wonder about what happened in the middle. You can feel the anguish of a parent who has to rid herself of a pair of shoes and subsequently, the lost potential that should have filled them. There is a larger context and narrative inherent within something so short and small. 

Recently, I’ve thought about this story from a new perspective. 

From a very literal view, I can now empathize with this parent. I’m in that mysterious and elusive middle of the story, as you Bree, our baby, has a genetically life-limiting condition. Our hopes have drastically changed since the initial news of us learning about you, landing now on a desire for a different ending than the novel above. Our expectations and hopes start with the desire for you to hop into a pair of shoes and experience the full warmth of our love, even if it’s for a short period of time. 

I’ve also been using this story as a tiny metaphor for your life as well. It might not be as long as we could ever hope for, given that anything shorter than outliving us is far too short. But even with the limitations of time (or words), the possibility of impact, context, narrative, emotions, and most importantly, meaning, are all possible. 

I’ve been slowly coming to grips with the very sad reality that I could watch you die. And that the vast majority of your existence with me will live beyond the physical time you might spend on Earth. It might live within the narrative and meaning that we give you moving forwards. Your impact might live through me, Rachael, Shyla, and everyone else touched by your story. 

In this horrible scenario, your life, like everyone else who has died before, would continue through the world of stories. You’ll be memories, a fairy tale, a superhero, a catalyst for imagination, a motivation for change. Remember that thing I was mentioning earlier, The Law Conservation of Energy? Well jam-packed inside of you is an energy that will forever connect to me and the universe. 

Advice #6: Don’t take life too seriously, except for when you should. 

This advice is more for me than it is for you Bree. Part of the troubles of us 46 chromosomers is that we cloud our lives with things that feel like they matter, even though they don’t. We focus our energy on things that are really silly in the grand scheme of things. We care too much about what others think of us, or place too much importance on our careers or our things or our own narrow perspectives. We take life too seriously at times. 

However, the only serious thing to do in our life is to look at life and figure out when and where the moments are, or who the people in it are, that deserve our energy. These are the times when life needs to be held to its highest standards and we need to appreciate, focus, and dive deeply into the wonders of it. There are few times in our life when we get presented with moments that explicitly show their significance to us. A lot of the really meaningful events in our life are only ever recognized in retrospect. Well here I am, barreling towards what might be the most important moment in my life, alongside the birth of your sister. I’m appreciating every bit of it.

I’d be lying if I said that I haven’t been perceiving this moment with fear and anxiety though. These can be good tools to help prepare you, but they can also be an overwhelming force. I don’t want to walk into your life scared, I want to jump into your life with the excitement it deserves. I get to look at my new daughter and see a beautiful version of myself experiencing the world for the first time. 

Like I said, I can’t wait to meet you. I can’t wait to show you around. I can’t wait to continue to learn from you. I can’t wait to be one of your hosts on this remarkable journey called Life. 

Advice #7: All you need to do is be and be loved.

I hope this rambling advice helps you Bree. I know it helped me. 

– Dad