Welcome to Holland

'Yesterday is history, tomorrow is a mystery, today is a gift. That is why we call it the present.'
Do you know who said that? One of the greatest philosopher's of our time....Winnie the Pooh. I'm writing this week's blog post fresh from returning from the cinema, where Kayli & I took Ava to see Christopher Robin. It's great getting to spend some quality time with our girl when on occassions I'm sure it must feel to her as though much of our attention goes to Oli. Not deliberately, but such is our current situation it can't be helped at times. 
She really has been fantastic through the past many months. It's hard to fathom how much they understand at that age, but her innocence, her zest for life, her energy has been the ray of light we've needed around the house as a distraction during the more solemn moments.

Time out for the three of us to watch a movie like that wouldn't have been possible last month. But this past week was momentous - we had home health nurses start at our house full time Monday-Friday to help care for Oli. I can't begin to describe what a massive relief that is, it's an absolute game changer having a more permanent support from a trained medical professional. Caring for Oli is a full time job. Not in a boring 9-5 job kind of way. It's no chore. It's the most amazing, rewarding job of all. But it's so bloody tiring, stressful & time consuming at the same time. Kayli has done an immense job of it, and continues to do so, but neither of us would be able to without some permanent help. 
As medical bills continue to mount and more time needs dedicating to those on the phone each day, as more specialists need to be contacted & are contacting us regularly, as Oliver begins to need more treatments, more focus and more therapy on a day to day to basis, then not to mention everything else that a regular person needs to do - take care of Ava, take care of the house, take care of our jobs, take care of ourselves. I think you'll understand what having a nurse at our house means to us. Sure, it's a temporary loss of freedom in our own home, but so far they've been great. We still devote plenty of loving family time to Oliver, but we can also begin to get other daily tasks done.

My next blog entry will look at what day-to-day life with Oli looks like at present and the care that he now requires to give you some understanding of his current needs. 
For now, I wanted to share with you this poem/short story by Emily Perl Kingsley, Welcome to Holland. It was first brought to Kayli’s attention at the United Mitochondrial Disorder Symposium in Nashville last month. It essentially highlights what life is like 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.
We’ve found comfort in the words and can fully relate to the fact that not all lives follow one set plan. I hope some of you can relate to it also.

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.