When you are pregnant, you dream about all of the opportunities your child will have; hoping for a bright future, miss out on nothing. When told that child is disabled those dreams come undone.
When Davis was just about one month old, I discovered that he was blind– not just visually impaired, but blind in BOTH eyes. Talk about scary.. as I sat waiting to find out why my child was not sleeping and seemed to cry all of the time. I watched as the Dr. examined my son then went white and took a seat on his stool and faced me with a look I had never seen before. What was wrong and how bad is it that the Dr. is acting this way? The Dr. told me we had to take him to a specialist as soon as possible because he could not see. He could not tell me the cause of my son’s blindness, but a good Pediatric Ophthalmologist would be able to give me a diagnosis.
What! - - What? - -
Did I miss something ?– this was the sort of thing that happened to other people, wasn’t it?
After seeing a few Pediatric Ophthalmologist, it was confirmed, he has Norries Syndrome, a rare x linked genetic disorder. At the time that meant about 100 cases in the United States. My life had been turned upside down and inside out. I was not really sure how to handle it.
With the diagnosis of Norrie’s Syndrome, I learned, that someday, I would have a deaf blind child and there was a good possibility there would be some mental delays.
This is when fear crept in – the fear that I wouldn’t be able to cope physically and emotionally with caring for a profoundly disabled child.
There was also guilt – for resenting that my life would never again be my own, that my child would almost certainly never live independently.
The dreams I had and the vision in my mind of what my family would be like looked quite different from how the average day played out in my home.
So how did I start to build a future for my son?
The wonders of the internet led me to meet virtually, and later in person, other families with similarly affected children. I joined the Norrie’s Association which was a national group of families with Norrie’s children and adults with Norrie’s.
The support, comradeship and sharing of advice which followed was tremendous, and is one of the greatest benefits of having a “label”. These support groups changed my life. It was like finding a lost family member.
I threw myself into learning everything there was to learn about visual impairment and being deaf blind. I began to go to conferences where I met other parents with blind children, as well as professionals in the world of VI. I loved these conferences! I met amazing people who were traveling along the same journey, as well as some insightful professionals. As I met other parents, I saw that even though we had different lives and different needs, there was an understanding that comes with being a parent to a special needs child. It is like entering into a secret club and only we know the password.
Many parents feel that initial fear and guilt deep in the pit of their stomach. It is an ever present feeling. We also learn patience and witness miracles that we otherwise would have been too busy to notice… we learn acceptance and have an unconditional love for this unexpected gift.
Yes, I said GIFT!
As much as I wanted and expected to help my child grow and learn, I found that while I helped him, he was teaching me to see the world in a new light. My son’s blindness has given me a perspective I never had before and without it I would have a very different life. Davis has a certain type of innocence that never leaves. It is not all sunshine and roses. I have struggled with many things as I have raised him. I have dealt with tantrums, unexpected behaviors, the frustration of trying to communicate, and witness meltdowns in both public places as well as at home. Yet even with his disabilities, he has extraordinary abilities.
At three I saw Davis. spelling difficult words on an interactive alphabet toy yet, he was not talking. I saw him solve difficult math problems in his head. Davis can tell how old a person is and the day their birthday will fall on if he can get them to share their birthdate. I saw his remarkable memory of elapsed time, remembering not only an event, but the date that it happened. Davis loves cars and can tell you what kind of car you have just by touching it.
All of this does not keep me from fearing the extraordinary circumstances I and all deal with as we and our children age. That fear we had originally is easily triggered at certain milestones. It has happened each time Davis switched schools, as he approached the magical age of 18, the day he graduated, and the first time he was fitted for hearing aids, just to mention a few. I am sure there are more of these moments in my future.
It is like riding a roller coaster, one minute I am hyper focused on dealing with the day to day issues, the next I am worrying about his development, his future, or angry with people not giving my son a chance. I have come to realize, it is a part of raising a disabled son.
Right now you may not have 23 years perspective, maybe you have 23 days, please listen to me as someone who’s been there. Someday you will look back and marvel at your transformation to a special needs parent. Have faith in your child and yourselves! Love them and help them to discover the world. As you help them, you may see your world in a new way too. You can’t escape what is ‑ the disability – but you can find ways to make life full and rich for your child and yourself. Your life will be different than you had planned, but you may discover that this gift, your child, is a blessing in disguise.
Laura Swinney
** There is also now support for families of disabled children who don’t have a diagnosis, through an organization named SWAN – Syndrome without a Name.
***When I encounter a new parent with a special needs child or anyone truly wanting to know what it is like to be a parent to a special needs child, I give them a copy of “Welcome to Holland”. I love the simplicity of it and how perfectly it parallels what it is like to find out you are a parent to someone with special
Welcome To Holland
by Emily Perl Kingsley
Copyright©1987 by Emily Perl Kingsley.
All rights reserved.
Reprinted by permission of the author.
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 flight attendant 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.
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