Saturday, January 26, 2013

Questions & Answers

I was given the Liebster Award and here are my answers.

Here is my Liebster Blog :

1. When you first got your child's diagnosis - what was your immediate reaction?
The process of find out  that Abby was blind and finding out what caused it was some of the darkest days of my life. I think i was in a fog for two months.    Abby was six years old and had just started first grade.  This should be one of the most exciting school years of her life and instead her world was put upside down. Than adding that we were are now aware that we had this rare genetic mitochondrial disease in our family it was really a complex layer to add.  This is hard to explain.  Abby is the one that is affected but LHON happened to my whole family.  My mother, sisters, myself and nephews all are aware we could be affected with LHON and blindness. Some say its like being born with a bomb (and there is even a book ) and I think that works. 

2. Why did you start blogging?

I felt alone.  At the time it was really hard to find any information about LHON and Abby is an outlier since it generally affects those who are male in their late teens and 20s more. There are very few children who are affected (or people who were affected as children).  I hoped to share what we went through to help others.  I also became aware with the complexity of the education of a blind child and wanted to help other parents who had blind / visually impaired children like my daughter.   I started this blog before Abby got diagnosed and you can see the first month of posts here:

3. What is the best thing you have learned since your child was diagnosed?
That blindness wan't as scary as I thought. Our society sees becoming blind as one of the worst tings that can happen to you. That simply not true.  I had two choices when Abby became blind. I could sit around and feel sorry for ourselves or do everything I can to help Abby (and others). 
become that person she would have become regardless of blindness.   I went over a lot of that in my post

Abby loves ice skating alt text girl wearing a panda hat is ice skating

4. What are you proudest of?
I am proud of both my children.  I am proud that Abby has adapted so well with becoming blind and that her brother has always been the one person who doesn't let her get away with anything because she is blind.  I am proud both my children are growing into such great kids. I am the luckiest Mommy in the world.  

My two kids alt text two kids smiling laying on the floor looking up
5. Do you have any regrets?
I wish I had known sooner that Abby was blind.  I don't know when the process started it very well could have started 6 months before we found out.  

6. What would you say to a new parent that just was told their child was blind/going blind?
This is hard because finding out your child is blind is a tramatic thig regardless when you find out. You are filled wiht all the misconceptions of our society.  I recall thinking my daughter life was over. I simply didn't understand how someone lived blind That its going to be ok.  As strange as it sounds embrace your child.... blindness and all. If you look at your child's blindness with shame and fear than they will to. 

7. How do you balance family life and life with a child with special needs?
The simple  answer is I don't.  I could work a lot harder at balancing my life. I have a hard time saying no. 

8. On a down day - what is your favorite activity?
I love just doing something fun with the kids.  Simple things. Like Shopping with Abby. Taking a walk with Sam.

9. What scares you the most?
I fear how other people will negativly affect my kids life.  A teacher who doesn't provide her with materials, classmates that fear including my daughter & a place that refuses to give her job because she is blind.   These things will happen.  All i can do is making Abby stronger.  
What happened with the musuem and Abby's cane is a good example of that. 

10. Do you have a favorite motto or saying?
Blindness isn't an end its a start of a great journey for the whole family. 

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