Sunday, May 18, 2008

You know I am pretty much an open book...

well at least about the things I want to talk about. The thing about me is the more I feel something, the more passionate and emotional I am about a topic, the more protective I am and I become less and less likely to talk about that topic. Do you know what I mean?

There is one topic that I am very protective about and rarely discuss, and that is what it is like to be the mother of a child with a disability. It isn’t that I am ashamed of my son, or that I haven’t accepted Down Syndrome as part of our life it’s just that I don’t always know how I feel about this subject – until I view it through another mother’s heart. I was at the girls’ Mother’s Day Tea at their pre-school (creating all kinds of hubbub with people wondering what I had done to my arm) and there were a few children performing who had special needs.

As I watched those children I couldn’t help remembering how it feels to watch your child who is a little different from the rest. It is such a bittersweet experience. There is the joy and love you feel as a parent watching your child participating and being part of the moment but there is also the sorrow of knowing how much harder that child has to try. How much harder that child will have to work for the rest of their lives. How their life is such a dramatically different experience than anything you have ever known. Sometimes it makes my mother’s heart weep for my son and all children with special needs. Life shouldn’t have to be so hard for any child. And you know I have empathy for my son but never pity because although life is different for him in some ways it is much greater when it comes to the things that really matter, like happiness and love and joy without jealousy or deceit or corruption and that my friends is a good thing – a very good thing.

So there you go, I’ve spoken. I’ll leave you with this poem by Emily Perl Kingsley who has a grown son with Down Syndrome.

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.* * *
©1987 by Emily
Perl Kingsley.


Maija said...

Thank you for the post and the poem. It's moving and also an eye-opener. I would imagine some of what you are feeling is grief as well.
You are wonderful, and I know a loving mom. I can see it in Alex's face!

Artziehodgepodge said...

Thank you for sharing. I was surfing blogs today and ran across yours. I totally understand, since I am the mother of a 27 year old downs son. Its another road traveled and a different slant on "normal".
The poem is wonderful.. and for those of us in the know.. it hits home.. thank you

Wendy said...

I went to the Women of Faith Conference last year and a woman with downs named Lisa signed all of the music that Sandi Patti sang. I could not help but cry...not because it was sad but because it was absolutely the most beautiful thing I had ever had the pleasure to be a witness of. God did not forget about Lisa and He hasn't forgotten about Alex. He has an intention and purpose and gifts for everyone that He creates. Alex glorifies God just because he is himself and that is better than enough...

Anonymous said...

I have a two year old daughter with DS and your blog said it all!!!! Thanks so much - I found your blog when I was reading the comments on Angie's blog!!!! Have a great day - Jenifer -