Well here is the truth of it…you probably don’t get a choice.
Since Boston was born the way I listen to prospective parents discussing their future children has changed. I hear them gush and plan and talk about who they will look like and what sports they will play. There is a weird certainty to these conversations, like the path is laid out so clearly one could almost touch it. There is no judgement as I listen, I find any planning of children utterly joyful, but there is a little thought that almost always crosses my mind.
There is a chance the soul who chooses you will be extra unique, that your child like ours will have special needs, and I see that you do not see this as part of your path just as we also did not.
Whether you believe you could or could not cope with special needs the fact is you probably won’t have a choice. People often ask if we knew Boston had a syndrome before he was born. Nope; perfect pregnancy, wonderful scans, amazing birth. No sign that anything could be out of the ordinary with our babe. But it is a story I have heard in our community of unique souls over and over. Whether it is a saethre-chotzen, craniosynostosis, down syndrome, asperges, autism…the list goes on, and most of us had not a clue to guide us.
I want to share a poem by Emily Perl Kingsley with you, it is called ‘Welcome to Holland’. If you are a parent of a child with special needs you may have already come across this one. I want to share it because here is the thing, let me reassure you, if you happen to have a child with special needs you will cope, maybe not all the time but on a whole YOU WILL. More then that, you will gosh darn love those windmills and tulips with every ridiculous inch of your soul 😉
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.