Tuesday, March 23, 2010

Welcome to Holland

I found a new Facebook group tonight for people diagnosed with "Lebers" (LHON). In the discussion posts, which I'm finding very helpful, a lady posted this poem, saying,
"I found this story soon after my son was diagnosed with LHON, and it helped me to understand and to explain to others the adjustment my family and I had to make to "our new reality." I hope posting it here will help others who are also learning to cope with 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 Colosseum, Michelangelo‘s 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 consider finding this a blessing! I really do. It puts things into perspective. It shows that just because you aren't living the life you planned, you are living the life that God planned for you, and it'll be great- as long as you remember that this ride will be just as good as the one you had planned to take...maybe even better! You can't spend your whole life thinking about what could have been, otherwise you're going to miss all the blessings you are receiving right now! Use all your trials and tribulations to glorify God; be an example to those around you! Show everyone that nothing, not even being diagnosed with a disability will keep you from shining your light and praising God!

I know life is hard sometimes, but it's the hard times God faces you with that are meant to bring you closer to Him. I know I can't completely understand; but I care, and I try to understand, and I'll do anything in my power to help. This is just the beginning of a long, hard, and fulfilling road we must all take together.

I love you baby brother! ♥ :)

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