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I will never, ever forget the day when my oldest child was diagnosed with a rare degenerative eye disease. After a battery of tests, the doctor sat me down and announced that my two year old had retinitis pigmentosa, and that she would one day loose all of her vision.

Surviving the Difficult Diagnosis

I remember very little of the next few days other than snippets of me sitting in the bathroom (the only really private room in our small apartment), crying hysterically. I repeated that routine two years later when my next child was diagnosed with the same rare disorder. It just seemed so unfair; so unjust.

After I’d returned to the land of the living, I thought about many things. Most of all, I thought about what sorts of visual memories I wanted my children to have. I wanted them to have memories of beautiful sunsets and other wonderful things. I wanted them to see as much of the world as they possibly could before the inevitable happened. I began to try to find a way to make this all possible.

Thriving Despite the Difficulties

I decided to homeschool my children to maximize the amount of time we had to devote to traveling. I didn’t have to worry about them missing school, because we could homeschool on the road. I also made a conscious decision to be grateful for what we could afford to do, instead of focusing on the many things we couldn’t.

We made numerous trips to different places close to our house mostly because of financial reasons. Then, a remarkable thing happened. My daughter, who was 11 at the time, was talking with her French teacher at a homeschool co-operative. She mentioned that her dream was to be able to see the Eiffel Tower before she lost all of her vision.

Her teacher was touched and began to discreetly spread the word about the little girl who wanted to see Paris before she went blind. Imagine my surprise when the teacher called my daughter and I to her house one day and told us that she’d gathered enough money for us to travel to Paris!

The three of us left for Paris a few months later and on my daughter’s 12th birthday, we visited the Eiffel Tower. We took the elevator to the observation deck, and gazed at Paris. It was beautiful! As we stood there, my daughter said, “Mom, it’s okay if I go blind tomorrow, because I’ve done it. I’ve seen what I needed to see.” She hugged us both and thanked us—and then I cried.

Thrive and Survive: Attitude is Everything

Several years have passed since the Paris trip and my daughter is now blind. At times, the sight of my child using her white cane overwhelms me, mostly because there is nothing I can do to change or “fix” her blindness. That’s when the “yuck” of life brings me down.

Recently, however, I had a moment of epiphany: I enlarged a picture my daughter had taken of the Eiffel Tower on that magical night in Paris. It reminds me to look past the “yuck” in life and concentrate on the magic.

[Photo by ||!prliignore0||]