Wednesday, April 10, 2013


Michael

I’m usually a very private person but today I wanted to share with you a little something about my life. In addition to owning Princess Linens, I have a wonderful husband and two beautiful young boys. Sam is a bouncing six month old baby and Michael is my busy two year old, who happens to have Down Syndrome.

What is Down Syndrome? Down syndrome is a genetic condition that occurs in approximately 1 in every 691 live births.  People with Down syndrome are both physically and mentally delayed and can have medical issues ranging from mild to severe.

Although there are many challenges and fears with raising my son, the blessings are tremendous. Yes, raising a child with special needs is a unique challenge, and there's still fear about Michael’s future because of health and social challenges; and certainly some days are much more difficult than if I had a "typical" child.  Many everyday activities like doctor's appointments, social gatherings, travel accommodations and even mealtimes are that much more difficult.  But at the end of the day I wouldn't trade the relative difficulties for any convenience or absence of fear. He has filled our hearts with so much joy and love.

You’ll be seeing more of Michael in the future since I am using my handsome boys as models for the Princess Linens clothing line.  In the meantime, I wanted to share this moving poem written by Emily Perl Kingsly, a mother of a special needs child that sums up our experience:

Welcome to Holland

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. 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, 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."

The pain of that will never, ever, go away, because the loss of that dream is a 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.

From our family to yours – Kathryn 

2 comments:

  1. Beautiful Kathryn, thank you for sharing

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  2. I can not begin to imagine the challenges that you are or will be facing in the future with your son. I can tell you that they never ever harbor any malice towards anyone no matter how they are treated. My Aunt Betty lived to be in her 60's before she passed. She was a wonderful woman that I didn't understand why she was the way she was until I was until I was grown. She grew up in a small town and we never ever let anyone pick on her. She was forever a child we could play with as we grew up. Her mentality never exceeded a six y/o. She did many things around the house to help my grandmother. We loved and miss her dearly.

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