A little piece of heaven

Here I am fudzing around the computer when I really should be sleeping.

But let me talk about Holland. More specifically, Welcome to Holland:

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.

I’ve always loved and enjoyed this poem. But a couple of days ago I saw it in the back of Jenny McCarthy’s book, Mother Warriors, I read it again and realized, NO WAY.

Because Welcome to Holland feels like such a wild misrepresentation of my journey. What do you think of when you think of Holland? Boring, dull, quiet, lacking life. Maybe that’s just me. But Holland seems like a lifeless place, a place few want to visit.

The truth is, I still feel I went to Italy. Not only do I feel I went to Italy. I feel like I’ve had the most amazing, in-depth, powerful, intense tour of Italy. I feel like I’ve been to the most beautiful parts of Italy, like I’ve gone for a drive in Tuscany, seen the beautiful pristine leaning tower of Pisa. I feel like I’ve been to the dirtiest slum in Rome and smelled the smog and been run over by one of their crazy motorcycle drivers. I feel like I’ve been tricked by a fake gladiator to take a picture and hand him $5 euros and I feel like I’ve been blown wide open by the feeling of piety and peace at a cathedral in Florence.

I’m sorry Emily, but this journey was not to Holland.

We’ve had the in-depth, enhanced, deluxe tour to Italy. We’ve seen the best and the worst. We’ve been lost in the darkness of night and the depths of sorrow, and we’ve been uplifted by the soaring heights of The Last Supper. Most importantly, our journey has been intense and full of life. Rich, fulfilling, constructive.

Honestly, sometimes I feel like everyone else thought they were going to Italy and found themselves in Holland. We thought we were going to Disney and found ourselves in Italy. We got so much more than we asked, so much more than we could even imagine. It’s like going somewhere to buy a candy and you’re given 100 million dollars instead. More than you could even conceive in your limited imagination.

Sure, this journey can be very hard. You hit the bottom of the wave and the water comes crashing down on you and you think there is nothing you can do but drown. But your boat rises and you find yourself at the top of the next wave and man, is it lovely.

Maybe some never remove the veil to find themselves in Italy. They think they’re in prison when the entire time they were in an Italy waiting to be explored, lived, devoured. If you just open your eyes and your heart you realize how lucky you are to be in Italy and why would you want to be in Holland?

The dichotomy arises when you find that what you fight with every breath and ounce of strength in your body is so your child can develop the skills to belong in Holland.

But having been in Italy, the closest you can get is Hollandwood. It’s an enhanced, enriched, entertaining, fulfilling version of Holland. Full of life, color, diversity, intensity, drama. Holland is closed to you.

I’ll take Hollandwood instead.

Nathan started HBOT today!





We are so excited! He tolerated 30 minutes in the chamber today, on his first try.

The universe has been insisting over and over that we need to try this therapy for Nathan so what an we do but listen and try.

Please pray that this works for our little piece of heaven!

I found Jason’s blog today and loved the message and attitude of the Drozdyk family. No limits. They will not limit Jason’s opportunities, they will not limit Jason’s future.

It made me realize that I need to have this fierce, clear determination. Like the Drozdyk’s, we want to give Nathan every possible opportunity. We are willing to get ourselves into any debt and financial crisis in order to give Nathan opportunities. We travel the world trying treatments and externally we are doing the best we can for Nathan. Here’s a page on what we’ve done and are doing for Nathan: Therapeutic Approach

But today I realized that what we are lacking is BELIEF.

I read Jenny McCarthy’s new book today “Mother Warriors” and something she said really clicked:

The most powerful tool of a mother who has a child with autism is the power of believing her child will get better. If your mind is consantly second-guessing and questioning the validity of biomedical treatments when so many moms are saying they help, then that is the path you will stay on. You will stay in the unknown. But if you are determined to heal your child and all of your focus is toward that goal, then your path will be with those who have recovered their children. Nowhere else. There is no second-guessing in this direction. There is not trying the diet halfway in this direction. There are NO excuses in this direction. There’s only focus, determination, faith, and a clear vision of the best possible outcome for the child.

Of course Nathan’s not autistic so the situation is slightly different, but the spirit is the same.

Jenny’s book is about Mother Warriors. And I realize that while externally I have acted like a mother warrior, internally I have not had that determination and belief. Part of me had a nihilistic, negative view that no matter what we tried, Nathan wouldn’t really get better. That we were trying because we had to try, but deep down I didn’t believe he could improve. Deep down I didn’t have faith.

And the main reason for this lack of faith is because I wondered, what does it matter? So what if Nathan walks and talks? He’s healthy and happy. What more could I ask for?

But today a genuine Mother Warrrioris born. Today I will stop being afraid to have hope. Today I will know that no matter what happens Nathan is perfect, but I will believe that Nathan has the potential and capacity to learn more. Today I will believe that Nathan can be both healthy and happy AND have some life skills.

Today, I will stop limiting Nathan’s future in my heart and I will see his limitless potential. Not just for gross motor development, but also as a human being to develop more qualities of love and caring.

A couple of weeks ago a wonderful friend gave me the movie “Peaceful Warrior“. What a beautiful message. I have been trying to remember that a peaceful warrior abides in the present, a peaceful warrior “takes out the trash” which is holding on to the past and fear for the future. A peaceful warrior is fully present in the moment, only the moment. A peaceful warrior can work towards a goal while abiding in the present.

So today a Peaceful Mother Warrior is born. One that sets no limits for her child, one who believes in her child’s potential, while accepting who her child is today and loving the child that she beholds in front of her.