'It'll never happen to me' - a parents story

Some people know from a young age that they want to have children. How many, what sex, when, even what they want them to be when they grow up.  Well that wasn't me.  I never really gave it much thought, just assuming that it would happen in due course. I always figured I would be a dad; I just couldn't be specific on the details!

When I met my future wife I knew from the outset that she wanted kids.  She had a very close relationship with both her mother and sister, and I knew that she'd like the same relationship with her siblings.  We talked about the future and planned for the "perfect family", two girls and a boy.

Nothing compares with the experience of a positive pregnancy test, or the first scan when through the darkness you see a small heartbeat.  It gives you a warm sensation that comes flooding when you think back on it.

Then comes the early stages, when you want to tell the world but can't.  Every strange twinge or pain sends panic through your system.  It's like nature's roller coaster. Telling your family that a new addition is on the way is incredible. It's a real sense of achievement. 

In the early days we had a few scares and decided to see a consultant on a private basis. Our baby was high risk for Downs Syndrome and it was like someone letting the air out of our balloon. We kept asking "Why us?"  Suddenly we were armed with information that we never thought we'd need.  Thankfully the consultant reassured us, we dispensed with the idea of any further tests and to cut a long story short our daughter was born completely healthy at 9 pounds 11 ounces.  Our little family was getting off the first rung of life's ladder.

It wasn't long before we were blessed with another pregnancy.  We wanted our children to be close in years and close in love.  I suppose we became a little overconfident.  We visited the same consultant who delivered our first daughter, and armed with his knowledge we declined to have any of the tests we'd had during the first pregnancy.

As the months flew by we brought home scan pictures which gave a 3d view of the unborn baby.  This was new to Northern Ireland and it was so comforting to see the face of our impending arrival!  Our second daughter was born by normal delivery and had 10 fingers and 10 toes with a full head of hair, albeit a little smaller than her sister at 7pounds 4 ounces.

The following days went by in a rush and we were discharged from hospital with a baby who had "dilated pupils" and a patch of white hair, which may have meant Waardenburg Syndrome, but we weren't to worry.

Well worry we did, and the fact that our new baby wouldn't respond to light or sound had us climbing the walls for answers. Suddenly our little world was under the microscope but we seemed to be the only ones interested in having a look.

We were passed from one waiting list to the next.  We spent hours ringing doctors and hospitals, reading books, searching for answers when we weren't even sure of the questions. Around 4 weeks later we secured an appointment with a Pediatrician.  He diagnosed Aniridia and Waardenburg Syndrome in the usual calm manner in which doctors give you bad news. We left his office that night totally numb, our minds weary with the "what if's?".

It was then that we turned to the Internet.  We'd really only ever used it to book flights or buy goods, never for any real purpose.  We found Hanna James at the Aniridia Network, and suddenly we'd found a friend who understood what we were going through.  Hanna was an endless source of support and information.  I still find it hard to comprehend that she's a young woman - she writes like a retired consultant!

We posted on a parent support group on the internet.  Suddenly as the support rolled in from across the globe we were amongst friends whom we never knew existed nor ever expected to know.  The months passed by and we had good news and bad news but essentially we were coping alone. 

We didn’t have any other friends with kids who had sight loss.  Some questions are best answered when you meet other sight loss kids and their parents and that’s where Sara and Tara came into our lives.  We were invited to a local meeting and suddenly we were amongst local people, all dealing with the same issues as us.  The group has developed and grown into Angel Eyes Northern Ireland.  We meet socially and exchange our experiences about parenting, health and education.  As we continue to develop as a group we aim to influence changes that will improve the lives of our children.  If you are dealing with sight loss then let us help you! 

But to get back to the point - it'll never happen to me.  But it has.  And you know what?  I have four beautiful children and a beautiful wife.  I love them dearly.  I have a different view on life now.  I value good health now when before I took it for granted.  I have a focus that I didn't have before - I am so pleased by the little things that our daughter does, like in the early days learning to sign "more".  Time has progressed and thankfully our daughter has made significant progress with regards to her sight and overall development.  Her eyes will never get better, and she’ll never drive a car or cross a road like a person with regular sight, but some thing’s are for sure; life is precious, sight is precious and and our kids are truly inspirational. 

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