By Emily Perl Kingsley:
I am often asked to describe
the experience of raising a child with a disability
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel.
It's like this......
When you're going to have a baby,
it's like planning a fabulous vacation trip - to Italy.
You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go.
Several hours later, the plane lands.
The stewardess comes in and says,
"Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland??
I signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy."
But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is that they haven't taken you
to a horrible, disgusting, filthy place,
full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guide books.
And you must learn a whole new language.
And you will meet a whole new group of people
you would never have met.
It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while
and you catch your breath, you look around....
and you begin to notice that Holland has windmills....
and Holland has tulips.
Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...
and they're all bragging about
what a wonderful time they had there.
And for the rest of your life, you will say
"Yes, that's where I was supposed to go.
That's what I had planned."
And the pain of that will never, ever, ever, ever go away...
because the loss of that dream is a very very significant loss.
But... if you spend your life
mourning the fact that you didn't get to Italy,
you may never be free to
enjoy the very special, the very lovely things ...
about Holland.
- - - -
Today, July 5, 2012, marks one year of diagnosis of Leigh’s disease for our family. Slowly, we have fumbled our way to Holland.
A year ago this morning, Neil and I sat listening to Dr. Koenig tell us the ugliest most gut wrenching, shocking news that no one should ever hear. We lived in a fog for many many weeks and months, slipping in and out of shock, but we kept going because of Will and in spite of ourselves. Every morning for at least a month I woke up thinking I had a bad dream and then realize it was true, cry, then live the rest of the day thinking how surreal it feels.
I suppose I could dwell on a lot of things today, and likely I will. But for now, I just want to say thank you to our family and friends who have supported us this past year – with tears and laughter. I know God has been watching over us, even though I’m so angry with him I can barely handle it.
Right now, I try to view these years as what might be the happiest time of our lives. We have a beautiful, wonderful son who is very much alive. We have real hope for giving Will the gift of a brother or sister or both. Neil and I have developed a wordless language that has made our marriage even stronger. Our families and friends have often lifted us up in our ugliest hours. Neil’s company is a thriving business. I was able to reduce my work week to do more for Will and our family. The list could go on for days.
So, thank you family and friends and most of all, thank you to Will.
And now, a walk down memory lane!
And now, a walk down memory lane!
First Bath
Month 1
Month 3
Month 5
Pumpkin patch
Month 8
Month 8
First Christmas! Sick with RSV so no Santa pic.
Crawling
Happy Birthday Will - 1 year old
Month 12 Trying to walk....
Month 13 - the old "w" sit that is a no-no
Month 15 - Started therapy and got some boots
Month 16: The ol' SPIO suit and still trying to learn to walk.
Month 16: Crawling around on one of my birthday gifts.
Happy Halloween ARR matey
Thanksgiving!
Christmas - Started walking Christmas day!
The "Fonz" lean back.
Christmas presents
Month 22 - Forward facing in the car seat
Month 23 - still needs some help / nervous mom while walking on the concrete
Can sit to stand quite easily now.
Mopping up.
Month 24
Happy second birthday!
Month 26
Month 27
July 5, 2011 - We all wanted to hide in a bag around this time... Diagnosed with Mito.
September 2011: Trip to Stanford for EPI-743 trial.
Pumpkin patch - yup, that's Houston for you, shorts in October.
Halloween 2011
Christmas, 2011
Helping dad out around the tree
Hay ride December 2011
Christmas Sing-a-long at school. My little Rudolph is concentrating hard.
Packing for our week 13 trip back to Stanford for the drug trial
The bag of empty EPI!
Eating chips!! And NOT choking. A miracle.
Breakfast with Santa at the Aquarium.
January 2012 - "I just climbing climbing" - with mom or dad there to catch him.
Helping dad build my new "big boy" furniture
Chillin' with my girlfriend, Caroline
Smores for everyone!
UMDF Energy For Life walk - raised more than $23,000 for research to a cure!
Trying to get a family photo pre-walk on a very rainy day.
At the zoo - first trip!
"Football player" hat, gloves and ball and riding a bike. Not sure how all that works really.
Going to his first theater performance with friends from school.
Pre-hair cut mohawk
Gymnastics!
Puppy dog walk in gymnastics
High fives with Mr. Glass
Happy Easter! Did an awesome job gather eggs this year.
April 2012 ECI Graduation
With Mr. George
Birthday boy! April 2012 / 3 years old.
Dress up
Trying on some new boots.
Working on his pinning at school
June 2012 A frozen yogurt mess!
July 4, 2012 - Driving the boat with daddy-o
Watching the water.
Cheers to the next however many months, years ahead of us with my little Mito Warrior.
