|Haven't seen this sleepy face in 5 days...but who's counting.|
My baby had Down Syndrome. He also had a heart defect that would require open heart surgery within weeks.
My world was rocked.
I kept having this direct conflict with the world around me. I would look down at my new baby and see nothing but a new baby: delicious in his fresh-from-the-heavens newness; glorious with his tiny feet and smooth new hair and sleepy face.
But the world would keep pointing out his flaws:
Do you see his extra space between his big toe and the rest of his toes?
That's a marker for Down Syndrome.
Do you feel how "floppy" he is?
Another sure sign.
Of course, I could see none of these things.
I was a mother with a brand new baby...he looked perfect to me.
Yes, he did have a droopy eye lid...but that was as far as my nit picking could go.
And, like all new mothers, I loved every tiny morsel of him -- droopy eyelid and all.
So, there I am at my six week check up for myself and my doctor doesn't really know what to say.
It's an awkward space...me with my baby that doesn't make the mark and she with her obvious pity and bias against him.
She summons up some effort to speak and she tells me this:
"Well, you have two other children and you know the good thing about this is that this baby will never leave you and well, you know the other two will."
Me, the one who can chat with just about anybody. The one who can make a quick reply to weirdos or bullies -- all I have is silence.
Actually, I had a screaming, yelling, out-of-control freak in my head
but cultural norms and expectations kept me quiet.
In my head my brain was coursing through options and setting aside disgust.
First there was the distaste of Patrick's reality -- shit, people really will expect him to do nothing but sit at home with me.
Second, came the outrage -- who the hell are you to limit my kid and expect that he will never leave??
Lastly, there was deep sadness -- maybe she knew the truth.
Maybe, with her doctor's education and her intensive training, maybe she knew something that I didn't.
Maybe she was right and having him by my side for the rest of my life was an unexpected blessing
and as good as it was going to get.
Her words weedled their way into my heart.
And, like a splinter, I could feel the calvary come out and begin to push it aside.
This kid was going to have his own life.
I was not going to define his future at a few weeks old.
He was going to get every chance the other two got and then we would figure it out.
Flash forward fourteen years.
Patrick still has a droopy eyelid.
He has freckles and a very light dimple.
He has a spirit that is simply radiant...and plenty of opinions.
He's an adventurous eater.
He loves Broadway musicals.
He has a wicked memory and often memorizes whole scenes or entire scripts quickly and easily.
He is funny and creative and gentle and interesting.
He is always ready to go.
He can't wait to get his driver's license. He is itching for a paying job.
He is planning his life after high school and trust me, I'm not part of it...at.all.
That prediction oozing with subliminally low expectations was so far wrong that I secretly wish I could cross paths with that ob/gyn and have her glimpse my world.
But that's the problem with searing memories.
They only usually blaze bright for one person...the other person has long forgotten some side conversation that had no real meaning for them.
Five days ago, I dropped Patrick off at sleep away camp. He's on his own for a week.
No singing from his room any number of melodies from Annie, Wicked, Hairspray, Beauty and the Beast or Peter Pan.
It's quiet around here...real quiet.
I find myself missing his good morning, very sleepy visits. I miss his voice. His laugh. His imaginative games that he plays with Caroline. I miss his teen angst and his daily texts of "I love you" that sprinkle my day ever since he got a cell phone for his birthday.
I miss his spirit and his light.
And, even though I have been hoping to stick it to that OB and prove to her that Patrick would have a life of his own...
the truth of his life, most definitely of his own making, is staring me in the face.
He's going to go too.
It might look different. It might not be that far away.
But he is never going to feel happy sitting at home with me.
That much is clear.
He tells me routinely that he wants to live in Boston.
He wants to take his wife to Hawaii for their honeymoon.
He wants to teach young kids drama in school.
I don't hear the word "mom" in those plans really anywhere.
Like some preview to a major motion picture, I know what's coming.
Patrick will find his way and have a future of his own...very likely I won't be living with him.
It seems quite possible that I may be in another town.
He has dreams and hopes for a future just like anyone else --
and like any other parents, John and I will work to support him in those efforts.
He has a life to live.
Like my other kids, I only have a finite amount of time with him in my daily life too.
There is joy and a thrilling sense of adventure in that picture of the future.
But, there's going to be a great big hole left gaping open too.
I'm going to worry about that later.
Right now, I'm going to check over the directions of where to pick him up in a couple of days.
I'm going to listen to stories on the way home and notice all the tiny ways he's gotten a bit bigger in this week away.
I'm going to cherish the view of his big smile and relish his huge hug.
I have about 36 hours to go -- I can't wait.