Tuesday, January 15, 2008

Welcome to Holland

People have asked about a few of the links on my sidebar. One is to the Autism Society of America and one is to cleftAdvocate - both very dear to my heart. See, I am a mother to one of those wonderful children from Holland. Here is the essay for those of you who are not familiar with it:

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.

And now my story:

My son was born 5 years ago last November. After a previous 20 week miscarriage, I was terribly paranoid throughout the pregnancy. When I went in to labor at 34 weeks, I was understandably upset. After 36 hours trying to stop labor without success, my DS was born with a unilateral cleft lip and palate. This is detectable on ultrasound, but we did not know. At that point I realized that I would be traveling to Holland.

G* had his first surgery at 3 months to repair his cleft lip. He sailed through surgery and recovery like a champ. Figuring I was leaving Holland behind me (except for a few occasional surgeries in the future), I started planning my trip to Italy again.

At age 2, G* was assessed by the Early Childhood intervention team from my local school district. I thought it was rather unnecessary, but is a common practice for children with cleft lip/palate since they frequently require speech therapy. At that assessment, the team recommended that we have G* see an ENT dr. They were concerned with his hearing.

After a visit to the ENT, it was determined that G* had significant fluid build-up in his inner ear and would require ear tubes - no biggie!!

G* was also receiving speech therapy through the school district since he was delayed in his speech (since he couldn't hear very well!!) He continued with speech therapy for 2 year until the dreaded A word was mentioned: Autism. G* was diagnosed with ASD (Autism Spectrum Disorder) in the spring of 2006. For the most part, he will live a normal life - just with some added challenges.

My plans for Italy are on permanent hold. He is a spectacular child, truly the greatest gift I have ever been given and I am a better person for being his mother. But I don't wear the rose colored glasses all the time. I won't lie - it's HARD.

So this card is for you moms that are visiting Holland. I know you can do it!!


Pam said...

What a lovely story. It makes me appreciate even more the healthy kids I had and now the healthy kids they have. You sound like a remarkable mom and your son is very lucky to have you in his life. I hear such wonderful strides are being made in autism research and hope that your little guy is able to benefit from these achievements. All the best to you and your family.

BTW - your card is very pretty and I love all your knitted items. What a talent! Those leg warmers are adorable.

chelemom said...

I too have a child from Holland. She has severe cerebral Palsy. I still can not read this poem without getting tears in my eyes! Hugs to you fellow Hollander!

Dawn Mercedes said...

wow...I didn't know that about you and your family Barb! Thanks for sharing!

Laura said...

Beautiful card, heart spoken story; blessings to you and your family. Thank you for sharing your story.

Michele Zwart said...

Thanks for sharing your story. I am amazed by the strength you and all the other moms have pulled through with. Good luck to you and your family. ;)