Tuesday, April 23, 2013

our own trip to Holland

Today I was startled by an overwhelming out pour of sympathy. I for the first time ever posted publicly about my daughter's diagnosis. I was surprised by the reaction and it took a while to digest it actually. I was appreciative for the support and not wanting to be disrespectful toward those who obviously care about us but it never occurred to me to feel sorry or that others might feel sorry for us. We have been living with a different normal for almost 2 years, this diagnosis wasn't a surprise but a blessing. Knowing what is affecting our lives gives us the tools to serve her better, it's covered by insurance where as the term "developmental delay" is not covered. Faith has hypotonic cerebral palsy. She is beautiful and wonderful the way she is, she doesn't need to be fixed. There was a time when she was brand new when I grieved the lost plans I had for her. Occasionally I still feel a sting when we encounter a new hurdle or when those days at the doctors get really long. I'm not sad about our daughter's extra needs, as a mom I see extra hardship for her and at times I am pained for her in those times but overall I feel blessed. As an advocate I feel excited to have been trusted with such a precious gift. Faith doesn't need sympathy; she needs to be embraced and empowered. Thank you for those who care and who maybe don't know what to say, above all thank you. Please use us as an opportunity to learn if you haven't been close to a family with special needs. Please know that we have our ups and downs and so far more ups than downs and we want to celebrate and share all we have been blessed with.

Faith's developmental therapist recommended an essay written back in 1987. I felt like it is an accurate and well written piece.

Welcome to Holland

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...

When you're going to have a baby, it is 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 of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag 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 am supposed to be in Italy. All my life I have dreamed of going to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have 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, and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.

And the pain of tha
t 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 go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

Written by Emily Perl Kingsley (in 1987)