Connections

January 07, 2010

Connections

This morning I had the benefit of having nothing on my agenda. The kids were both in school and I had a few hours all to myself. I spent some time cleaning - I find it very rewarding. And I was also able to chat with a mom whose daughter has Sanfilippo. We met briefly at the conference in FL. She is lovely and her daughter is so sweet. She looks a lot like Waverly. We shared our stories and connected through our similar experiences. I was comforted with the reminder that I am not alone. I am so thankful for the friendships I have formed with other MPS moms.

Comments

Messy and Wonderful said…

I'm glad you have those relationships. I can't imaging all those trials AND feeling alone.

January 8, 2010 at 12:15 AM

Jenkins said…

What a great connection for you to have others dealing with it all. I am sure the understanding and support is like none other.

January 13, 2010 at 4:51 PM

Welcome to Holland

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.