raising hunter

There is a poem I found from another Mom on the Tracheostomy forums I read...This is a well known poem in the world of people who have or have had kids that have some sort of a disability or special needs.

While Hunter has needs that require medical equipment, extra knowledge for me to learn, extra care, talking to people who I never imagined I'd need to talk to, learning more about medical insurance than I ever wanted to...but at the same time, Hunter is perfectly normal and otherwise healthy and can do 99% of the things a child without a trach can do and hopefully soon he will be without a trach even. For me though, I feel as though I live in between these two worlds...one foot in each world. So close to the world I imagined...the world where I don't  have to remember a suction machine, or did I bring enough catheters, or did you bring the emergency bag?? I am thankful my "Holland" is only temporary...hopefully...and to the Mothers who's "Holland" is permanent....you are Hero's in my book. Motherhood is the hardest job in the world, add on top of that medical issues for your child...there's no bigger or more important job out there.

Welcome to Holland

By

Emily Perl Kingsley

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...

When you're going to have a baby, it is like planning a fabulous vaction trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michaelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very Exciting.

After months of anticipation, the day finally arrives. You pack your bag 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 am supposed to be in Italy. All my life i have dreamed of goin to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing in that they have not taken you to a horrible, disgustin, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's a slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where i was supposed to go, That's where I had planned'.

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.