Sunday, July 21, 2013

He's Going To Go Too

"Sometimes, when one person is missing,
the whole world seems depopulated." --Lamartine

Haven't seen this sleepy face in 5 days...but who's counting.

                                 When Patrick was born I was by myself at my six week check up with my ob/gyn. 
                                   I was feeling ridiculously fragile...already cracked and just waiting to spill out.

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 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."

I'm horrified.
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.

Hell no.

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

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 communication.
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.


  1. Wow. I love this and as you know could have written it! Emily just got back from her first week of sleep away camp and I like you found myself missing the sweetness and silliness she brings to my life each morning. She arrived back talking about high school, the future, driving, getting married and all of the things Patrick speaks of. I am seriously thinking about printing out your writing and sending it to our pediatrician who was our 'bearer of bad news'. I love you and your writing Beth! Someday, I'd love to meet you. And of course Patrick!

    1. Julie...I know! I loved seeing Emily's pics on FB from camp and loved hearing about her adventure. She is most definitely going to have a full adult life and I can't wait to hear and see all about it. My prayer is that we meet very soon, Julie...maybe in Indy 2014?? :) (and have Patrick and Emily meet too!)

  2. LOVE it. Oh, expectations. So silly. What a educated yet very unknowledgeable doctor!

    1. you many, many kids must deal with hideously low expectations with teachers but it was really shocking to have it all begin almost at's to holding up high expectations (with supports of course!) all the way through. :)

  3. I love this, Beth. We are about 8 years behind you guys, and love that Patrick keeps paving a brighter future than anyone would've given him credit for at just a few weeks old. I love Patrick's plans, even if right now you're not in the picture ;-) I'd love a chance for John Michael and Patrick to visit sometime. Thank you for all you've done for our family! Big HUGS!!

    1. Monica...I'd love to have JM and Patrick have time together too...whenever I see JM's picture it always makes me smile. He reminds me so much of Patrick. Grateful to know you and your beautiful family. :)

  4. You gave me tingles! Thank you. The doctor that broke the news to me when my daughter was a week old (she was a preemie and you couldn't tell she had DS by looking at her) told me she might never read, might never speak clearly... what a load! She was reading by the time she was 3.

    1. Hi! Thank you so much for leaving a comment and letting me know a tiny bit of your story...that is my favorite thing about having a blog...connecting with other people almost immediately and the back and forth. Thank you! Reading at 3!! Wow! Yes, so very much of what doctors say at the beginning is just simply untrue. It's mostly glaring ignorance and nothing with malicious intent but it is awfully hard to take when you're in such a vulnerable place yourself as a new parent. Thanks! ~Beth

  5. You are a wise mom to see what's coming. Patrick WILL have a life, and you will be part of it, but not the center of it - as it should be. I have lived this story, with a son whose challenges and needs for support are greater than Patrick's, as you describe him. My son will also be 40 years old next month. And, not once, ever, did I let others limit his future. I know they thought I was crazy, or in denial, or over zealous, or... had been touched by any number of other maladies that made me lose my sense of reality. But the joke is on them. Jason, who according to them, would "never be able to live in the community", has been living in home of his own (rented, but his home) in Santa Barbara, with live in housemates who provide 24 hours support since 1992. We made a plan with Jason and his circle, including funding agencies, and negotiated a budget for "parent-vendored supported living". There were really no agencies in our area doing true supported living at that time, so I elected to take it on myself. Some years later, a supported living agency in Sacramento grew from Jason's and my experience, and that of a friend whose son has autism. Through that avenue, we helped several people even purchase their own homes, and supported them to select staff that they chose and we hired for them. We even wrote a manual for families for the Department of Developmental Services. Jason has a life - his life. He has a home - his home. He has friends - his, again, not just mine or ours. He makes decisions and choices, and is a part of his community. Is it all easy? No. Is it all worth it? Absolutely. Patrick will be an awesome young man. He has a great start. Just keep expecting the unexpected, keep your eye on the star, and help him see it, too. Good luck to all of you!

    1. are simply amazing!!! I feel so so grateful that you took the time to post a comment and to share your story. I would LOVE to meet up with you some time and really talk about the nuts and bolts of how you supported Jason to have his real independent adulthood. What a gift you are!! Please contact me at if you are willing to speak further about this. Also, thank you so so much for the encouragement. It really is wonderful. ~Beth

  6. I am covered in goosebumps and tears are running down my face...your thoughts are beautiful and I'm so glad you shared them for people to read. I am printing this post & will refer to it frequently as my Tysen is only 4 years behind Patrick.
    Thank you Beth! xo

    1. Hello! Awww thank you so so much for taking the time to leave a comment. It means the world! I really appreciate your kind words and can't wait to hear more about Tysen. :) ~Beth