Saturday, October 25, 2014

A long road to travel, often alone but never by yourself...

If you asked any Union Middle School staff member what my three favorite things were, I suspect they would respond with the following answers: Costco, my iPhone, and my family.

They would answer Costco due to my weekly trips with my daughters...

They would answer my iPhone (recently upgraded to the 6+) because it's always in my hand and the object of my eyes...

And they would answer my family because they know how much I treasure them, specifically my wife, my dog, and my adorable twin daughters.

The story of how my wife and I "built" our family has been shared with our staff. It was a whirlwind of an experience. Even now, looking back at the 6 months, I'm not sure how we survived.

The timeline was as follows:

April - Meet with an Adoption Agency
May - Paperwork (and when I say paperwork, i mean more paperwork than I completed during my entire college career)
June - First glimpse of our future daughters in the form of four photographs
July - More Paperwork
Late August - Time to Fly to Russia
September - Another trip to Russia
October - Oh wait, two more trips to Russia.
November 4th - Home.

That's the short version. And as hard as it was, the hard work has been every day since.

See, while they mentioned that our daughters were prematurely born... and that their birth mother had little to no medical care... and that they each had minor developmental delays... nothing can prepare you for instant 16 month old twins.

The next three years were a whirlwind. We knew something was wrong with the older twin, Kenna. She struggled to use the right side of her body. Both of the girls have severe speech delays. Advocates. IEP meetings. Occupational Therapy. Physical Therapy. Speech. Special braces. Special shoes. Theratogs. Glasses. Ear infections. Tonsil operations.

They say that parents of special needs children have a higher rate of divorce. My wife and I, happily still married, completely understand why this statistic is true: it is hard.

It's not just hard at the playground where your children can't climb the stairs without support. It's not just hard at the shopping center when your four year old daughter throws herself to the ground in a two year old tantrum. It's not just hard when you see other kids in their pre school selected exclude them from participating in various activities.

It's hard when we're at home and your daughter with cerebral palsy loses her balance and bangs her head against the bookcase.

It's hard when you're awoken at 6 am by violent screams in their bedroom where you find one of your daughters unable to open their eyes and stiff as a board, followed by (amazing supportive) firemen, ambulance workers, and hospital staff who help everyone through future seizure protocols.

It's hard when you realize that perhaps college isn't in the cards and this road is going to be way more than what you bargained for.

There is a short story/poem by Emily Perl Kingsley that perfectly describes our journey. It was written in 1987 and remains quite relevant today.

"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 actually found "Holland" to be an amazing place. In fact, my wife and I wouldn't change a thing.

This journey we are on is something that is going to challenge us on a daily basis for the rest of our lives. We often talk about how lucky we are to have them. I've had nightmares imagining what their lives would have been like as a product of the Russian orphanage system. Thank goodness we have family, friends, and so many supports available to us to guide us and our children through these years.

As an educator, being a parent has been quite insightful into how I work with our students and parent community. The perspective now available is something I admittedly lacked previously. I'm quite proud of the work we do with our special education students and families. I'm a big believer in a phrase that I've said many times during our IEPs: "Whatever your student needs to be successful, short of horseback rides in Montana (an actual request at a former place of employment), I'm going to make sure we can give it to them."

Because that's what I would want for my daughters.

Our kids deserve it.

yes, from a weekly trip to Costco, taken with my iPhone

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A long road to travel, often alone but never by yourself...

If you asked any Union Middle School staff member what my three favorite things were, I suspect they would respond with the following answer...