I stumbled across these thoughts from a mother of a disabled child. Her words describe, in great detail, the unforeseen plot twist in her motherhood fairytale. I did not have a disabled child come into my life. I did however, have a disabled adult come into my life. That adult was me. In September 2013, I became disabled. I became legally blind without knowing why – until a diagnosis was confirmed by a mitochondrial DNA test. I was totally unprepared for this real life plot twist. It feels something like this…
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. ~ via LHON.org
GGB NOTE: Like the author, I was “planning to go to Italy”. It was going to be fabulous! On September 24, 2013, I was diagnosed with LHON. In other Words, I landed in Holland. What?….No, No, No! How could I end up in Holland? I don’t want to be in Holland. I don’t know what to do here. THIS was not on my lif itinerary. People tell me I’ll be okay, and I’ll make new friends. I’ll do lots of things in Holland, I’ll just do them in a different way. No! I want to go back home. I don’t want to be in a place I can’t see.
Lovely way to describe the LHON experience. Don’t know if my affected spouse would agree, but it does make sense. He isn’t interested in travel any longer, just a warm clime for winter. Being the driver and spouse and married to a very disappointed, disgruntled person has a terrible effect on our lives. Wish he could appreciate what we still have, instead of what is gone.
God bless you and your way of reaching out. May there be a cure for this terrible disease in your lifetime.
I will never forget that story. Beautiful. ❤
Love this Maria. Thinking of you in Holland today…xo
WOW………..that gave me chills all over (tears too)
I can just FEEL the waves of loneliness and loss coming off of you. I’m so sorry you’re in such a confusing place.
I know I speak for many of your friends, too, when I say we will send you postcards and wine from Italy so that you always feel close, and we will visit you often in Holland so you can introduce us to tulips and windmills and awesome cheese. We will always have plenty to share and talk about. Hang in there, and learn lots so you can tell the world about what kind of new and strange land you’re living in.
P.S. While you’re in Holland, don’t forget to visit Amsterdam!
It helps me to understand a little of the challenge you are living with.
I’m sitting here crying. I’m not blind …….yet. I hope I will never be, but the chances are very likely that I will be one day. I read your blog and am both horrified and uplifted. If this is a journey I have to make it’s comforting to know others have gone before me and will hold my hand.