Wednesday, July 1, 2015

Sweet Sixteen

I'm 20 minutes away from my son's 16th birthday...
and my 26th wedding anniversary.

The two are forever linked.

Patrick on his 4th birthday...singing and smiling.

Patrick's not home today...he's busy at Camp PALS.
One place I wish I was invited to attend...and one where I am most definitely not wanted or needed.
It's getting more and more obvious with each birthday that Patrick has his own life to live.

Although this is the first birthday where we are not together, I know, can feel in my bones, that it won't be the last.

He has friends to make and loves to meet and purposes to discover.


I want to make a proposition.

I've been thinking about this a lot lately and well, it seems like I need to say it out loud.

I don't think I could become the person that I am meant to be without Patrick in my life...
and I wonder about so so many others. Here are just a few:

Eunice Kennedy Shriver
Jenni Newbury Ross
Rachel Coleman
Eunice had her sister, Rosemary, her sister with developmental disabilities.
Without Rosemary, Eunice would have lived her very privileged life and found a suitable husband and had an adulthood filled with meeting statesmen and discussing politics at fancy dinners.
With Rosemary, everything changed.
Her heart was cracked wide open and she was thrust to the margins, side by side with Rosemary.
She became a champion for people with developmental disabilities and created groundbreaking legislation and visionary opportunities.
She took the shame away and gave people who had never known kindness a taste of dignity and honor...all of this was done with Rosemary in mind.
Special Olympics, Head Start and the Kennedy Foundation became 
hallmarks of Eunice's tireless efforts.

Jenni Newbury Ross has a brother with Down Syndrome named Jason.
She wanted Jason to enjoy the same summer camp opportunities that she did.
So at the ripe old age of 16, she created the first prototype of Camp PALS.
Ten years later, thousands of kids with Down Syndrome have had an inclusive camp experience thanks to her efforts and countless counselors and directors have been infected with 
Camp PALS love.

And what about Rachel Coleman...a musician who has a deaf daughter.
For Rachel, she thought her life was ruined.
How ironic that music -- the one thing that nourished Rachel's soul -- would be the one thing never given to her daughter Leah.
That is until Rachel, working through her grief and fear decided to create some songs especially for Leah using sign language.
Her music became a doorway for Leah and thousands of other children and families.
Today, Signing Time is a PBS show and a successful company...not in spite of Leah...
but because of Leah.

I know that John, my husband, would never have been involved in his line of work, without Patrick.
His success is his to explain and share somewhere else...but it would not be possible without Patrick.

For myself, when Patrick was born, I truly believed that I would never make another friend.
I cried tears of anguish and isolation.
I could feel my world constricting and getting narrower.

I couldn't have been more wrong.

In fact, my world has exponentially grown with Patrick in my life.
My life's work now focuses on including students with developmental disabilities 
in Catholic schools...
and just this past week-end I spent time with people who are dear to me that are from
Napa, California; Pontiac, Illinois; Webster Groves, Missouri; Manhattan Beach, California; Noblesville, Indiana and more -- all over the United States.
And tonight we'll be celebrating with friends from Middletown, New Jersey.
I would know none of these people if a certain little babe had not entered my life in July 1999.

Somehow these people we love make up the secret sauce to our world.
Without them, our hamburgers would be tasty...but would be noticeably less zingy...
pretty bland.


I want to say for the record that my other children have infected me with a love and secret sauce that is all their own...I am the mother I am because of Jack, Mary Kate and Caroline as well and that is not to be tossed aside like the rubber band on the newspaper as if Patrick is the only news.

I'm a different kind of teacher because of Jack...a different kind of woman because of Mary Kate and a different kind of mother because of Caroline.

We can never know where their influence begins...all the threads are braided together.

But my world came crashing down sixteen years ago when doctors told me what I already knew in my heart...
my baby had Down Syndrome...

July 1st, 1999, I was born anew.
Heart cracked open so wide that my vision has forever altered.
I can see those on the sidelines...
in the margins...
isolated and alone.

Like a giant mirror... I can see myself in their reflection.

Happy Birthday, Dear Patrick...may your day today be filled with love and light...
may your birthday song be loud and crazy...
and may you find time to dance...
a toast to YOU, a very sweet sixteen.

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