Quick Note

Just wanted to throw something quick up to say thanks for all the calls, emails, and notes for Carters surgery tomorrow. If all goes as it should this will be a super quick shunt replacement and we should be home Tues. afternoon.

I will update everyone through a whrrl story so you can follow that in any of these ways.You only need to do one of them to get the updates.

1. Sign up for an account there and add me as a friend: http://whrrl.com/ If you do this, you will get an email everytime I publish a new story.
2. Check the front of page of the blog for my latest whrrl story which over the next two days will be updates on how he is. Keep hitting refresh–it is good for my stats (hee hee)

and with that I am going to bed and leaving you with one cute Carterism:

Me: You are the cutest kid ever

Carter: Yeah, you can take that to the bank!

Welcome to Holland

One of my amazing friends whom I have never actually met in person is going through the very difficult loss of a little boy with spina bifida. Years ago I started an international support forum for people with spina bifida. I met my friend here. We emailed back and forth for years, we kept in touch when I had to shut down the board temporarily, I sent her stuff to help her son that they do not have in Northern Africa, we ’speak’ weekly No, thank God, it was not her son. My friend is a support contact in her own right in her area where information about spina bifida is not so readily available. She is a source of inspiration to mothers all around her area who come to her for help and advice. It was one of these little boys that she has helped and loved. She remembered this poem (story?) and asked me to send it to her for the family. It reminded me that I should share it again for all the moms (and dads) for whom the birth of their child did not turn out quite the way they expected. It is one of my favorite stories of all time and it makes me smile and cry every time I read 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.”

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Tags: poem, special needs parents

Hospital Thoughts

March 9, 2008 by Barb  
Filed under homeschool & unschool, spina bifida, unschooling

18Leave a Commenthttp://elementaryspirits.com/2008/03/hospital-thoughts/Hospital+Thoughts2008-03-10+00%3A30%3A00Barb

So, while I was in the hospital I did a lot of thinking about the past year especially and how happy I am that we are now homeschooling. Sitting there watching Carter sleep hooked up to so many machines made me think about how many nights Bob or I have done this, about how little control we have over him and his health, how many years we wasted trying to maintain the status quo. I could kick myself for not listening and being strong enough years ago to follow my heart and not put him in school. I always wanted Carter at home with me but I let everyone talk me out of it. I listened to all the comments of how not going to school would make him reclusive and wouldn’t give him the real life experience that he needed. My solution was to be the PTA President and then a teacher at their school. It was always my way to be there with the boys as I never wanted them far from me. Almost a year into this (May of last year was really the last time he attended school for any regular basis) I laugh at all of that. When we first started homeschooling, we followed all the rules We did a curriculum every day, even though he hated it most of the time. I remember one frustrating day of actually yelling at him to pay attention to some stupid lesson he was not at all interested in and that was the day I became an unschooler. I didn’t know at the time that there was a real term for my newfound philosophy. I just realized how stupid it was to keep pushing him to be ‘grade level’ and prove that I was right in homeschooling him. Unschooling has been the most incredible thing to happen to our family. It has given control back to Carter over a life that he previously had very little control. You could see the changes in him during this hospital visit. He advocated for himself, insisted that everyone tell him what was going on, told people to leave him alone when he had enough. He saw how little control he had in this situation and fought desperately to gain it back. Perhaps that is because he is getting more comfortable controlling his own life through unschooling. It hit me as a watched him sleep how much unschooling has given him and our family. Now, I will admit I a much less confident unschooling mom of Connor. He has some big goals and I struggle with the boundaries of pushing him to do now the things he needs to accomplish those goals. I suspect as Connor fully explores his freedom, his goals will change. He will see that there are many more roads for him to travel now. At 11 years old he started his own company and website. Yes, he gets a lot of mom support with it but it is his in the end and it is becoming very successful. He wants to explore this more, getting more involved in building business relationships, controlling the site finances, and delving into more advanced coding. I know that he has the drive and spirit to be successful in whatever he chooses. My hope for him is that he learns to be HAPPY in whatever he chooses. That is my hope for Carter as well. More than anything, the boys both need to learn to control their own lives and destiny.

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