Ronan is a happy, active little boy who keeps his parents and relatives constantly entertained — talking, laughing, or doing something silly. He also has a congenital eye condition that has led to underdeveloped eyes. He has an anophthalmic right eye socket (no eye), and a microphthalmic (small) left eye with a retinal coloboma (a cleft in the retina). He is certified as having a severe visual impairment.
We are his doting parents, Cecily Morrison and Nikiforos Karamanis. Cecily Morrison works as Research Scientist and Nikiforos as an IT consultant. We would like to share with you the adventure of our first year with a blind child. It is one that has taken us on a tour of the National Health Service as well as into a world in which vision is not the dominate sense. We write this blog to share what we have learned and as a measure of appreciation of the blogs that we have read to find solace or guidance.
Our story — the day after Ronan was born, my husband noted that he did not open his right eye. Soon the paediatric ophthalmologist showed up diagnosed Ronan with an anophthalmic right eye socket. We, like many people, immediately asked about the other eye. That too had been affected with retinal coloboma, making his prospects for vision poor. This was quite some news to reconcile while trying to recover from the birth and figure out how to manage this small bundle.
Most birth announcements are done with such joy – what should our birth announcement be? How should we tell our families? What was life going to be like for us and this child? Would this be the end of our careers? Would we be caring for an adult child rather than he for us when we got old? This was the start of an unknown journey, one we had not prepared for. There were far more delights then we could have imagined.
We found these feelings so well captured in the essay: Welcome to Holland by Emily Perl Kingsley (1987).
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.