Grieving for my son's future

As a special needs mum, I have been anxiously awaiting/dreading Miss You Can Do It, a documentary about a beauty pageant for special needs girls. I wasn't entirely sure what I would be seeing or feeling while I watched this -- would I be depressed? Hopeful? Discouraged? Frustrated? Jealous? Grateful?

I was certainly emotional. The tears began at the four-minute mark and kept coming. The whole film was remarkable, but one particular quote struck me, implanting itself in my head on something of a loop since I first heard it. A mother was talking about her daughter, who was born with Down Syndrome, a diagnosis that was very much a devastating surprise to them at her birth. She repeated a piece of advice that was given to her the day her daughter was born: "It's OK to grieve the child that you thought you were going to have, because in grieving that, it helps you to celebrate the one that you've been given."

Cue sharp intake of breath.

Pause DVR. Rewind. Play back. Stare into space. Rinse. Repeat.

My God, oh my God. I hadn't even thought of that. Why hadn't I ever thought of that?

I have grieved over and over again for the bonding time I never had with Owen in the hospital. I have grieved that he crashed in Scott's arms the first time he was held and how frightening that must have been for them both. I have grieved being 55km away from him on his second night on earth while he fought for his life. I have grieved not holding him until he was three days old. I have grieved not nursing him until he was 11 days old. I have grieved that I only knew if he was about to stop breathing in those first two weeks by watching numbers on a machine and listening for alarm bells. I grieved that I was his mother and had not given him the safest environment to grow inside me and still could not protect him now that he was outside of my body.

I have grieved for my daughter, Parker. For the childhood she could have and should have had -- full of play dates and lessons and running around carefree. For the childhood she ended up with --- full of compromises and co-therapy sessions and slowing down so her brother won't fall. She knows what "different" means, what special needs are. I have wondered what it will do for her future. Will she need to take care of him? Will he be a burden? Will she be more empathetic?

Will she resent him?

I have grieved for my husband, Scott. For this man that I have loved from just about our first conversation. A man who takes the weight of the world on his shoulders, then offers to carry your burden as well. He is the epitome of the "strong silent type." He has arguably one of the most stressful and high-pressured jobs in the world, and then he comes home to this. I grieve the family life that he was trying to build, now mired in insurance claims and therapists, and that he uses his holidays for trips up to Owen's Neurologist/Ophthalmologist/Genticist/PPT meetings. But he goes to all of them. Every single one. I grieve the lifestyle that he has toiled for the past twenty years to build that is now going towards bills and specialists and special education advocates.

I have grieved for myself, for the life I could have had. For the woman I could have been.

But I have never grieved for the child I was going to have.

Because I have Owen. That is the child I've been given.

I cannot say why in my over-thinking, hyper-sensitive and neurotic mind it had literally never occurred to me that Owen would have or could have been someone else. That he would have had a "normal" life. That at 3 1/2 years old, he would now be talking in sentences and be able to identify even one color consistently. That he'd be able to walk up and down the stairs and have a real friend.

He has never even had a single play date.

Perhaps, subconsciously, I never let myself go there for fear that I would never climb out of the black hole I was diving into.

I cannot grieve that other child because I don't know him. I never met him. I never loved him. He was not the child I've been given.

And I love my boy. I love him so much that it hurts to consider that there was ever another "Owen" out there that could have been mine. That could have had the easier road in life. That could have had a life where he didn't have to fight for every single thing he ever had. Every word. Every step. Where everything came naturally. Where it all came without having to sweat or work. It kills me to think that there was a path for him where one day he just walked, and he started talking, and I wasn't scared to read what the milestones were supposed to be.

I cannot grieve the child that I thought I was going to have because I never got the chance to imagine him. It all happened so suddenly. I was caught up in the whirlwind of his birth, his fight, hoping that he had a future was more important than what it would look like.

I can't allow myself to fantasize about what his "typical" future could have been like, because I cannot bring myself to think about what his actual future will look like.

What will I need to grieve in the future? Will he have friends? Will people be cruel to him? Make fun of him? Will he even understand it if someone is mocking him? Will he always be "slow"? Delayed? Disabled? Will Parker be embarrassed by him? Will he learn to read? Will he have therapy appointments instead of soccer practice? Will he learn to drive? Will he get a job? Will he be independent enough to live on his own?

Will somebody ever love him? Will he get to experience that?

Will he be OK?

It's OK to grieve the child that you thought you were going to have, because in grieving that, it helps you to celebrate the one that you've been given.

I grieve for my son. My daughter. My husband. Myself.

But that other boy... Well, he was never mine.

Read more about Miss You Can Do It in the blog post The kids' pageant that celebrates true beauty.

Jamie Krug is a stay-at-home-mum with a full-time job as the CMO (Chief Medical Officer) of her family. She is is mother to an inquisitive daughter, Parker; and the mischievous-grinned Owen. Her blog www.OurStrokeOfLuck.net tells the story of her family’s day-to-day struggles and triumphs in the wake of the devastating and still largely misunderstood rare diagnosis her son received at birth. Follow her on Facebook.