A WEEK IN THE LIFE OF....

A family raising a child with special needs. Ok...well maybe it won't be an exact week, but I plan to post a little something everyday about what life might be like at our home on any given day! October is Spina Bifida Awareness Month. Click here for a quick overview. I promise to make you laugh, you might cry...but will promise to make you laugh again, and I promise to remind you every day this week that if you are considering or trying to become pregnant to take your folic acid...it is so important to help prevent neural tube birth defects.

Blake is a very high functioning child physically. He can walk and run unassisted, but that has not....nor will that likely always be the case. We do have major bladder/bowel issues which are our toughest to deal with on a daily basis {can you imagine buying and changing diapers for six years for the same child?...yeah Dave and I would love to be done with that....but it will be lifelong challenge for Blake.}

We have experienced all different emotions while trying to figure out what "normal" is for our family and have found that laughter is the best medicine. I blogged previously about some funnies and some seriousness regarding our emotions you can find them here, here, here, and here.

The toughest part in the beginning was figuring out how to express my emotions to others. Here is what saved me and to this day is quoted in our home quite regularly....

WELCOME TO HOLLAND
by Emily Perl Kingsley
©©1987 by Emily Perl Kingsley.
All rights reserved

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 youto 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.

I hope you enjoy this weeks posts and I want you to know that MOST days we love being in Holland but there are some days we despise that we are not in Italy!

We laugh a lot in our family....we laugh at ourselves. I believe that it creates confidence and great self-esteem. One thing that we laugh about...for our sanity sometimes and to help Blake feel like he can have fun with his "socially unacceptable" bowel issues, is the bowel issues themself. We don't laugh at him....but laugh about them and with him. My family did not know that I was planning on these posts this week, but last night Daddy, Kaia and Blake were sitting in the family room....Dave strumming the guitar to a blues tune and Kaia and Blake made up a 'poop song'....a very appropriate for our family, very funny poop song. I am trying desperately to figure out how to post it today. It will make you laugh if I could ever figure it out!