Patrick...My Teacher

"When the student is ready, the teacher will appear." --Buddhist proverb


  Happy World Down Syndrome Day!!!


Today is March 21st, which means that today is a day to reflect on the gifts of a little something extra, Trisomy 21 -- otherwise known as Down Syndrome. For those that think this date is random, it is intentionally chosen to remember the extra (or third) copy on the 21st chromosome that is the hallmark of Down Syndrome.This is World Down Syndrome Day which means that all over the world from Brazil to South Africa, people are celebrating!

Now, if you are new to this, you may think: "What is there to celebrate?"  The kids are retarded and learn everything much more slowly than typically developing kids.  Fifty percent of children with Down Syndrome can develop a heart defect that requires open heart surgery. Check.  Patrick had that.  At nine weeks of age, at the lovely weight of nine pounds, nine ounces my sweet baby boy had his heart cracked open and repaired.  The irony is not lost on me: the person I know with the biggest, most beautiful heart needed a "repair".  I am forever grateful to Dr. Mohan Reddy at UCSF for re-creating the four chambers of his heart and repairing both valves so that Patrick can run and play and dance his heart out. (Yes, pun intended.)  A whopping one out of 100 kids with Down Syndrome can develop leukemia.  It is a 1 out of 10,000 chance if you have 46 chromosomes.  Sadly, Patrick developed that at the ripe old age of almost three. Words cannot express the debt we owe the hundreds of families and doctors who came before us who refined the treatment that gave Patrick a real chance at living a normal life.  Money and smart people can change the world -- many forms of children's leukemia are curable and treatable today because of their hard work and tenacity.  Patrick is a lucky beneficiary of all of that research and we know it.

Today, Patrick is a healthy and thriving 11 year old.  He's a big brother and a little brother.  He's an avid reader, music maniac and happy traveler.  He plans on living in New York City and working on Broadway. He has taught me so many lessons that I could dedicate my entire blog to his teachings.  Today in honor of this awesome day, I'll focus on my favorite three life lessons from Patrick:

One: Celebrate Everything!
Patrick knows how to celebrate like no other.  When you arrive home, even after a few minutes of being gone, he greets you with all out abandon.  He hugs you tight.  He smiles and acknowledges your presence.  He lets you know that you matter and not just a little!  He will cheer for you at your lacrosse game, watch your latest dance moves, reflect with you over photos or scrapbooks and jump up and down with raucous cheers if the Aggies win.  Let's not even discuss Christmas or weddings.  And, watch out on your birthday!  He will sing the loudest, sidle on up to you and let you know how very special you are.  Compared to Patrick, the world looks downright stingy.  Why, oh why do we not celebrate more?  Why do we wait to squeeze those we love tightly?  Why do we hold anything back?  Patrick has helped me to live and celebrate everything. Remember, there is a reason I get his wisdom on a daily basis, I'm a slow learner.  Eleven years into this and still I find myself holding back. Ugh!

Two: Live in the Moment
Of course, lesson number one fits snugly into lesson number two.  Life is so much better when you take it moment by moment.  For eleven years, I have been alongside someone who values the present.  Yes, Patrick can look forward to an adventure and/or a celebration in the future very willingly but that doesn't seem to get in the way of right now.  When you wake up in the morning, Patrick tenderly greets you.  When you eat dinner, he knows how to enjoy his food and gratefully pauses to thank the person who prepared the meal.  He will wait for you to begin eating, not because he is being overly polite but because he knows that the meal will be so much more enjoyable once every person is there.  He's ready to jump on a rope swing and sing; eager to grab a sandwich and head on a road trip.  Patrick doesn't get caught up in any past wrongs or any future angst.  He is busy living right now. Again, I take my cue and try to model my teacher.  I mess up pretty much everyday...but don't worry, I will get my remedial lesson.

Three: Slow is Beautiful
We live in a world that values speed.  We talk about it with our internet, our cell phone system, our children and even our cooking. But, stop, take a minute and think about it.  Anything that is worth doing is worth doing slowly and carefully.  Let's take eating...would you rather gulp down a meal or linger and visit and actually savor your food.  No question, the relaxing meal wins.  How about reading a book?  Having a conversation? Thinking about the world? How about living? Better yet, breathing?  When was the last time you: savored, cherished, relaxed, lingered or really listened.  With my daily teacher, I've gotten good at knowing what matters and slowing down.  I call Patrick "My Freedom Train".  Before Patrick I believed in the need for speed.  Today, I have learned the beauty in stopping and noticing the details.  I've been witness to a flower unfolding in slo-mo and boy is it stunning. I no longer want to race, rush or even fast forward.  Life is too gorgeous to speed it up.  Thanks to my boy, I've embraced a slower pace of living.  I'm a better parent and a better person for it.

So...on this day to celebrate that little bit extra, I cherish my son, Patrick.  Born with Down Syndrome, a heart defect and a leukemia survivor you'd think he'd be pissed off, ripped off or bitter.  Instead, he lives with real grace, love and humor. He's ready to make a friend, celebrate any occasion and have fun. The guy knows how to live.  He knows the secret and I'm humbly grateful he's shared it with me.  We all need a little extra.