By Patty Origer
When you as a parent learn that your child has a disability or a chronic illness, you begin a journey that you never imagined. The “Welcome to Holland” story that I read when my son was small was meaningful to me. And as our family has been on this journey for almost 25 years, that story means more and more.
In case you’ve never read it, here’s “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.
The story describes that the unexpected journey will be filled with strong emotions of joys and sorrows, tough decisions/choices, interactions with a variety of professionals and specialists you never expected to meet and an ongoing need for information and services. Being a parent is a journey whether your child has special needs or not. All we can do is learn and do as much as we can before and during the journey and focus on being adaptable and flexible.
That is where organizations, like Easter Seals Iowa, can help families who have a member with disabilities find support. Services range from Supported Community Living, Summer Camp, Respite, Assistive Technology, Employment Training, Day Habilitation, Case Management and more. Over the years we have utilized several different services provided by Easter Seals Iowa as our son’s interests and needs changed.
My best advice for those families just starting this journey, is to remember to enjoy Holland. Celebrate ALL the milestones and victories of all your children, big and small. Be an advocate for your child and family by always continuing to search for the right fit, the right services, the right supports for your child and family’s needs. And take advantage of those services. One thing I would do over, is to take advantage of more services for the parent/caregiver – say YES to that much needed support and respite!
Continue to seek and utilize support networks so you can truly enjoy your experience in Holland.