Friday, February 11, 2011

A Time to Grieve

When a loved one pass away, it takes time to grieve and mourn. When you lose your eyesight, it also takes time to mourn that loss. To learn to come to terms that what you had is no longer yours and accept the reality of what things have become.

You cannot expect a child to be happy about a loss this big. I for one learned to cover up my grievances so that it does not worry my parents. But it is more stressful to have to hide your true feelings to the ones cloest to you, it makes you even more isolated from the ones you love and a wall is put up around you.

Grieving is a process, for some it takes more time than others. The worst thing you can say to someone when their down is don't be down, because no one wants to be, often it's an emotion that the person cannot control.

As a parent, tell your kids you know they are sad and that it will take time to recover. Let them know you support them even in the darkest of moments, it's not easy to face these dark moments with tem, because it means you have to be able to handle that emotion as wel, but this kind of support will help you build trust and support for your child.

Having a kid with Stargardt's means you need to be more than just a parent, you need to become mentally mature to handle negative energy and emotions. Be a tree for your child because that's the only thing you can ever do. They will need to face it themselves, but the most comforting thought of all is to know they don't have to face it alone.

Often Stargardt's patients look too normal that you forget. But for us we never forget, because we live our world in a state of blurriness. We can only accept this is our world and find ways to get around obstacles, but I assure you, we never forget.

6 comments:

  1. HI MY NAME IS CHUCK AND I HAVE BEEN LEGALLY BLIND SINCE I WAS 15 I AM NOW 59 AND I HAVE HEARD IT ALL ( YOU LOOK TOO NORMAL TO BE LEGALLL BLIND ) I ONLY TELL PEOPLE ON A NEED TO KNOW BASIS BECAUSE OF THAT REASON AND OTHER'S ONE BEING WHEN YOU ARE NOT TOTALLY BLIND SOME PEOPLE FIND IT FUNNY LIKE IN THE CARTOON MR MAGOO , I LET THEM KNOW WHEN ICAN I DON'T FIND IT FUNNY, PEOPLE JUST DON'T UNDERSTAND NO MATTER HOW CLOSE THEY ARE TO YOU SOME PEOPLE CARE AND SOME ARE JUST TRYING TO BE POLITE , I COULD TELL LOTS OF STORIES SOME FUNNY SOME STRANGE SOME SAD , BUT IT IS NICE TO BE ABLE TO VENT HERE WITH FOLKS THAT ARE LIKE ME AND DO UNDERSTAND. THANKS, SIGNED CHUCK.

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  2. My 18 year old daughter has just been diagnosed with Stargardt's. We are all shocked and feel devastated, to say the least. We have no known family history on either side. She seems to be handling it better than we are but I can hear the anxiety in her voice at times. It's a disease that seems to have a fair amount of uncertainty as to how quickly it will progress. Any information, insight, hope or tips on how I can be the best mom to her would be very much appreciated! Thanks!!

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  3. Hi, I was diagnosed when I was 8. Thereare 4 of us kids. The oldest is the only one without stargrdts. I can relate when I was told, it was kinda like ya, good luck wirh that. This was back late 70s, and I lived in a very small town. School was a nightmare. Teachers didnt understand it, and most honestly didnt care. I am now 40, and still feel like I havent dealt with the loss. I too put on a brave front for I guess everyones sake. Any time i have been emotional about it has always involved my daughter not being able to see her dance in her recitals, class plays. etc.. I loved reading the blog, and comments. Marla

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  4. My 18 year old daughter has just been diagnosed with Stargardt's. We are all shocked and feel devastated, to say the least. We have no known family history on either side. She seems to be handling it better than we are but I can hear the anxiety in her voice at times. It's a disease that seems to have a fair amount of uncertainty as to how quickly it will progress. Any information, insight, hope or tips on how I can be the best mom to her would be very much appreciated! Thanks!!

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  5. There are so many options for your daughter. She can get assistance to pay for college. or a trade. Theres alot of support out there. If you have any other questions feel free to ask.

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  6. My 8 year old har just been diagnosed we are waiting to See a specialist so only know what we have found on the web at what age will this start to affect him

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