ASK.org & Welcome to Holland by Emily Peril Kingsley
Yesterday I attended a seminar on raising a child with special needs held by ASK.org. I had really no idea what to expect. I went there with so many questions and the goal of getting those questions answered. I left with so many more questions and yet learned so much.
Upon arriving they gave us a binder of how to keep our child's progress organized. Talk about overwhelming. To think that you have to keep a journal of all those that interact with your child makes me anxious. But if that's what will help her, bring on the binders!
As well, they included a story in our packet. This really hit home. In all of my research thus far, I haven't read this story, but it really says exactly how I have felt for the last few months. The author is Emily Perl Kingsley and she was a writer for Sesame Street. She has a son with Ds. I wanted to share it on my blog so that others could find it as relative and touching as I did.
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 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 ...
This story touched me so deeply. There wasn't a dry eye in the room. All of the mother's that attended this seminar have children with special needs already. Some are 6, 7, 8 and even 17. Some have Autism, Azberger's, Cystic Fibrosis and then there were 4 mother's who have kiddo's with Ds. One lady and I connected as we sat next to one another, her name was Tracy. Her son is 21 months old and has Ds. After introductions, she leaned in and told me how brave I was and that's when the flood works began again. For some reason, sitting in that room with all of those mother's made Leighton's diagnosis so real. Yet, I am sure the realness of our situation isn't even close yet.
However, the biggest takeaway from the seminar was that I need to first and foremost love and cherish our baby girl. Not that there was ever any doubt that will happen, because I will love her until my heart falls out. But it was a nice reminder to think about my baby first and foremost and all the rest will fall into place. In the last few weeks I have found myself getting very anxious about childcare and being with her enough since Jay and I have such long commutes. I am frantic about putting her in a day care; worried that a nanny will be too costly; what if she comes early and her room isn't ready? Let's not even get into the birth of our angel... that's a whole other issue for me.
All of these things are coming to mind and it's making me a bit crazy. But I know that when I hold my baby in my arms, all our troubles will not exist for that moment and all the worry and journey to get to that place will be over. She will be here and we will be blessed.