Happy Birthday, Marshall

All dressed up for lunch

Brotherly shenanigans

Family photo

There’s no fat face I’d rather kiss than Marshy’s

It’s hard to believe it has been one year.  In many ways, it was the longest year of our lives, but because of the learning we’ve had to do at lightspeed, the year has been a blur as well.  On that cold, rainy/snowy February day last year, I carried my little newborn boy into the back of an ambulance to be whisked away to Toronto East General.  Wrapped in several blankets, little Marshall Han Ku lay in my arms as the paramedics gave him oxygen through a mask, checked his vitals, and congratulated me on our beautiful addition to our family.  I sat in stunned silence, more worried and sad than I had ever been.  In one morning, our lives were turned upside down.  That night, our neighbour Neil knocked on our door, and without saying anything he gave me a hug and told me everything would be alright.  I’m not sure I believed him at the time.

Stretching at the hospital

A full year later, upside down has meant a lot more appreciation for the fragility of life, and I can’t speak for Bridget, Quinn, and the cats, but it has also meant a great deal of joy and love.  Despite the nights of crying (that still happen sometimes), the days and nights at the hospital, and the constant worry for the future, there has been nothing more wonderful than to lie in bed on weekend mornings with my two boys snuggling with me and laughing.  I have had the privilege of watching Quinn be an amazing and tender big brother, as well as Marshall’s biggest fan.  Marshall looks at him with his big eyes full of nothing but love and happiness.

From the early days

I’ve watched Bridget go from superstar mother to mother of the year as she juggles myriad appointment-making, all with her chin up and hope in her heart.  She has been a rock for our family.

We’ve had family and friends rally behind Marshall and give us more love and support than I thought possible.  We’ve wanted for nothing, especially not encouragement.

And most importantly, Marshall is doing well, perhaps even thriving.  He laughs, he smiles, he has started babbling (of course, “Daddy” was his first word!!!), he plays with us, and he has taught me what true toughness means.  He has endured more in his one year of life than I have gone through in thirty-nine years.  He is, in a word, my hero.  I rankle at the thought still that he will have to carry the burden of teaching compassion and empathy, but who better to do so than my little hero?  When I look into his sparkling eyes, I see a boy that doesn’t yet know or care that he is different, but instead looks at me with the one thing any father would wish for – love.

Pre-Superbowl pep talk

Because that’s the point of family, isn’t it?  There is love in this household – enough, I think, to carry us through the hard times and the surgery he had and the surgeries to come, as well as anything that might be coming in the future.  I have to think this way.  To look at it any other way would make it too hard to go on.

That first night, Neil was the first of many to tell me everything would be okay, and gradually, I came to embrace that thought.  It HAS to be okay, because it just has to be.  It will be.  Each day, it gets a little bit easier and more comfortable to think that, as Marshall has developed and grown.  Things have gone much better than I imagined it would since that first scary, unknown day.

Always ready with a smile

Thank you to all of our neighbours, who have done nothing but embrace Marshall each day with the same love they have shown Quinn.  Thank you to all of our friends, near and far, who have made sure we our lives have been as stress-free as possible.  Thank you our families for rushing to our aid at the drop of our hat, for letting us cry on your shoulders, and for loving Marshall and the rest of our family with tenderness and kindness.

We have not been alone in this difficult journey.  There have been a lot of other families raising children with Apert syndrome that Facebook and the internet has allowed us to communicate with and share our fears and questions.  Each day, I watch their struggles and triumphs too.  Sometimes, my heart breaks, but it also bursts with pride as I watch young men and women succeed and thrive around the world, all of them overcoming much more than most of us have had to face.

All of those children and adults are my heroes.  It is a community I did not know about one year ago, but now consider myself lucky to be part of it.

Finally, thanks for reading this blog and coming along for the ride.  One day, I hope Marshall will be able to tell you his own thoughts.  Until then, it’s my pleasure to speak on behalf of him.

Learning to stand

Quinn has been an amazing big brother