1 Year Later

This post has been running around in my head for  many weeks now as the date has approached in the same steady way that every other day comes. May 18th. That date will forever be ingrained into my head with such significance that I will never, ever go a year without pausing on this day to take the time to reflect on the year that has past and the year coming up ahead.

May 18, 2013

I can choose to dwell on the pain that resides in my heart and has taken residence there every day for the last 365 days or I can choose to celebrate the lives that we have all been given. Today, I will choose the latter. I will celebrate all the good in our lives while quietly reflecting on all of the struggle and hardship we have faced, endured, and triumphed over. 

May 18, 2013 

Today, I will celebrate the resiliency of my children. I will reflect on their growth, our growth, as a family. I will silently watch my 9 year old daughter in wonder and awe as I look back on all that she has gone through: all of the uncertainty, all of the fear, all of the needles, tests, procedures, poking, and prodding. 8 hospital stays. 8 trips to the infusion center. 1 blown vein, 2 central lines, 6 MRI's, 1 spinal tap, 1 EEG, and the list goes on and on.

Today, when you think of my daughter, think of the fighter she is. Think of all that she has gone through, and wonder, could you have done it? I don't know if I could have. Think of how she went through all of this...and only cried out once (when her vein blew). Think of how she patiently and quietly allows each procedure. Each nurse that misses a vein the first time and sometimes a second time to find a line for an IV - she says nothing. Does not wince in pain - although by the squeeze my hand is taking from hers -  I know it hurts her. My little girl is one of the bravest souls on the face on this earth. 

May 18, 2013

I know that I have posted this more than once before, but I feel that it is so perfectly fitting for this day (and probably everyday for the rest of my life) that I wanted to post it again. This piece says all that I would like to say, but lack the eloquence to do so. Today is a day to celebrate life and hardship, love and family, endurance and strength. Today is a day to celebrate our Sarah. It is also a day to celebrate our sweet Andy, Josh, and Elizabeth because although they do not live with this disease inside their bodies, they carry it around with them in their hearts. Disease affects not only the person living with it, but all those who love that person as well. 

Here's to the upcoming year. May we always remember, no matter how hard life may get, that we always have each other to lean on. Family first - always. 

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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.