What I would have missed

This can be a dangerous game, the “what if” game. It can lead to grass is greener type of thinking if you’re not careful, but it can also, when done carefully, remind a person of how far they’ve come and how lucky they are to be standing in the exact spot their feet have landed. That research study got me thinking about how different our lives would have looked if Lincoln didn’t have DS. So, today I want to look at what if Linc had been born with 46 chromosomes, pink and fat and healthy and typical.

I have no doubt we would have adored Lincoln instantly. We would have taken thirty seconds to thank God for another healthy child, though we would have really been thinking that we were pretty much expecting a healthy child and really it was no big surprise we produced another “perfect” little bundle of joy. We would have taken him home, happy but tired, and fallen back into the pattern of bickering that we picked up after Nico was born. We would have continued taking our frustration and exhaustion out on each other, and though we were struggling to get by, we would have kept on insisting that we could do it all alone.

We would not have been cauterized together as a family the way we were when Lincoln was born. We would not have been driven together by the sudden realization that surviving now meant more than making it through late night feedings. We wouldn’t have been united in the common cause of getting Linc home from the NICU and getting him the best care and therapy we possibly could.

And what’s more, I don’t think we would have ever realized that we couldn’t do it alone. We wouldn’t have been forced to reach out to a community who had experience with something we were just beginning blindly. We would have remained insulated, wrapped up in ourselves and our way of doing things, instead of reaching out to the DS community, joining a church, and learning to ask for and accept help from family and friends when we need it. We would have been stuck telling ourselves, “I can do this, if I just work a little harder, if I just read another book on parenting and count to three before I lash out at the kids and if I nap when they nap so I’m not so frazzled.”

Instead, we had the unbelievably freeing experience of being forced to say, “Golly, this is harder than I thought. I am in over my head here, and I need some help.” And that has brought us support we would never have known existed otherwise. It has allowed us to put our egos aside and learn what is best for our children, allowed us to learn from experts and also, at times, to learn to ignore what the experts say and listen to our own intuition about what our children need.

Without our Lincoln, in all his 47 chromosomal glory, we would not have been able to raise the considerate, empathetic person Nico is becoming. We would have been so focused on how bright he is, on what a glowing future that predicted for him. We would have taught him that being smart and succeeding in school were top priorities for his life, instead of teaching him that being a person of character is the most important future we can envision for him. What version of success would we have conveyed to both boys?

Undoubtedly, both of our children would have been raised to be more shallow, more quick to notice status and ability rather than personality or character. Nico would have been infinitely more selfish if he had not been raised with a brother who needs so much time and attention, if he had been allowed to keep hogging the spotlight and taught tacitly that he deserved all the attention he could capture. And we as their parents would have sadly believed that the measure of our success was closely related to how much praise and attention our sons garnered from the world. How many people they charmed, how many awards they received, how many dollars they made.

I think none of us would ever really have known what we had. We would have been the bright, healthy parents of two bright, healthy children. Two little fireballs destined for greatness, smart enough to get into any college and tackle any career. I have a feeling that would have been very important for us and we would have been tempted to live vicariously like academic stage mom types. And we would have thought all was as it should be. We would have felt we deserved to have healthy, brilliant children whose trajectories had no end in sight.

We would never had known the fear of watching a son struggle to breathe, a son with a hole in his heart, a mouth that refused to accept food and lungs too sluggish to adapt to the outside world. We would never have known the terror of reading the list of possible health conditions our son might have, never have lived through days when we believed heart surgery was imminent and when we learned that even with best scenario health outcomes, the average lifespan for a person like our son was 45 years. We would never have known that every single day is a gift. Every single day is an amazing, undeserved gift of time with our beautiful children, with each other.

We would have gone on believing that we deserved every day, deserved every breath. And we would have taken them all for granted.

If Lincoln hadn’t forced us to face the fact that we are all temporary, we are all broken in our own ways, and we all only get a small chunk of time here, we would have taken for granted thousands upon thousands of deep breaths, steady heartbeats, and tiny spoonfuls of food shoved into a tiny mouth. We would not have cried and cheered at the first few bites of ice cream. Would not have caught our breath in wonder at a few steady footfalls on a flight of stairs. I would not have learned the intimate and complex language of a wordless child climbing up next to me in a chair and gesturing in a downright cheerful way for his list of demands: water please, and pull the blanket over our legs so we can share warmth, and then look at the TV so we can watch the movie together. I would never have known someone could say all that without saying anything at all, but now I know how much we say to each other even without speaking. I know the value of just being there, next to someone, speaking the shared language of family that does not require you to get all the words right to get your point across.

If Lincoln had been born without Down syndrome, I would never have known that we desperately needed someone to remind us of a few important things. I would never have known that sometimes not having your prayer answered is a miracle in itself, that sometimes what you think you want has to be swept aside to make room for what you need. I would perhaps have heard people quote something like that and nodded in agreement at the sentiment, but I never would have known it, really known it with the understanding of someone who has lived a truth rather than just read it in a book. And I don’t know that I would ever have been able to believe that there was a plan for my life, as I’d always been told, until I saw the plan myself. I don’t know that I would have seen my faith revived as it has been in the past few years without experiencing an event so unexpected and unsettling that it reminded me why I needed to believe in the first place.


And finally, the first lesson Linc’s diagnosis taught us. Without those early days in the hospital, trying to make sense of our new role, Sam and I would not have learned firsthand that you don’t have to run the whole race at once. You just have to take each step, each moment, one at a time. Focusing on the moment at hand frees you from worry over the next two thousand steps ahead, and forces you to see, and hear, and breathe in the beauty and value of each moment of your too short life.