I am blessed.

I am blessed with amazing children. Both of them.   Its not a uncommon occurrence for me to get comments from complete strangers how well behaved my children are.  I am honestly not bragging. I don't think we did anything special with them.  They are just two children with naturally good temperaments.   

I am so proud of them when we got to teacher conferences and both children are talked about so nicely by their teacher.  

Its has amazed me how well BOTH Abby and Sam have been dealing with Abby losing her vision.  Sam is understanding times he was never was understanding before.  He watches out for his sister in ways he never did before. Its amazing. It used to Abby who would watch out for Sam. 

I don't think I will ever quite understand how Abby is adjusting as well as she is.  We know that won't always be the case but right now we are just amazed by how she is coping.   She still wakes up with a smile.  She doesn't sit around in her sorrows. She adapts. She is amazing. I never thought my daughter would become my hero. 

Today a group of girls walked quickly by Abby.  She turned calling  a friends name. Not only had they already gone but her friend wasn't even in the group.  She just shrugged it off. To me it was a shocking example of how much my daughter has lost.  To Abby it was just part of her new life. 

I am so proud and lucky to both of my children's mother.  Its an honor. 

Days Like these

What  a day. I am so tired.  This morning was Abby's first visit with a neuro-opthamologist in Boston.

A few lessons learned today.

• Having a six year old  lose her vision is a very hard thing for a child to handle developmentally. 
• I STILL wait for doctors to tell me that its all been a mistake and Abby doesn't have this problem.  

Abby had a hard time at this appointment. The office at Tufts was great. Abby has just had it today.  Abby did great at first. She was responsive during the vision part of the exam but when eye drops came out she got very upset. She was given two different sets of eye drops.   She completely pushed back.  They got the drops in the eyes but Abby wouldn't stay still anymore.  She kept her eyes shut and they had to pry them open.  Abby is generally a well behaved child. (a joy) 

Abby went on strike.  She refused to be any help with her appointment.  I had to balance my own frustrations to realizing my daughter is breaking on the inside.  

This is Abby's life and I got to respect that (to a point)  We had another doctor's appointment for next week and we are canceling it.  She will having more doctors appointments (some soon) but she really needs us to have less focus on her eyes I am doing everything I can for my daughter.  She deserve this.  Its not longer what is best for Abby but mommy waiting for a doctor to tell her is all some horrible nightmare. 

My heart crushed when instead of solutions for Abby's eye sight problem the doctor focused getting her support for low vision.  There is no magic wand. There isn't any fix.  

We are working with the doctor to work on supplements but beyond that there is not much they can do. 

Season of Change.

So much has changed for us in such a short period of time.   Sometimes its the little things. Like Abby using the public bathroom. My sister noted a time she was with her and the stall wasn't that clean.  Abby couldn't see the detail enough to realize it wasn't really clean enough to use.  Something she has done a thousands of times.

Abby is going to be attending a Perkins School for the Blind outreach program in a weekend in December and I have this questionnaire to fill out.  Simple questions if Abby can do this and if she can do that.   I have had to pause so many times this morning and ask myself if I am answering it for Abby now or Abby when she could see.  I think i am going to finish it tomorrow.  When i try to answer for Abby today I just don't know some of the answers.  Looking at the questions (which must be the same for all ages)  I realize there is so many things Abby hasn't done on her own yet (due to age) that she is going to struggle learning. Like cooking.

So I am putting these papers away and are going to finish them later.

Educating my functionally blind daughter

Functionally Blind.   That's what the report said from the Teacher of the Visually Impaired said.  Its hard every time I hear it.  Reading the report was hard. When everything was laid out the way it was really showed how serious her problem is.

Some key points were that Abby can still see pictures in books well but struggles to see text even while enlarged. She has to be at least a foot from someones face to see emotions. She still involved and does quite well with physical education class.

The vision teacher is going to be teaching Abby Braille.  While she can see print enlarged normally (even this isn't consistent because it depends on the circumstances ) she will never develop a true reading fluency  with just text.  She was in the magically stage of reading of almost getting it but not quite.  She can read a lot of words (and does a remarkable job with spelling)  but when it comes to blending a sentence much is lost to her when its enlarged. 

There are many people with LHON who don't learn Braille for many different reasons. I think the age of onset is key. Its a personal choice for many. I think Braille will be an important tool in her education and should open a lot of things up for her. 

Its hard because I have never done this before. There is no handbook "How to educatioin your child who loses her sight at 6" She is so young and at such an important part of her education.

 I believe Abby can do it. It will be her accomplishment. I believe she will have many.

October 27th

by Chris

That was the day...October 27th....the day of the appointment.

It seems like years ago now that LensCrafters threw up their arms and said they had no idea what was wrong with Abby's sight, and October 27th was the date her appointment with the ophthalmologist was scheduled.

That date came and went now...

In the intervening time between LensCrafters and that October 27th appointment, being impatient, fighting for answers, there were trips to ophthalmologists, geneticists, a neurologist, and so many phone calls, a meeting at Conant school with a dozen people, well, you get the point.

But the fact remains...

Abby in June of 2009 had 20/20 vision, and today... a year later, my daughter was measured to have 20/500 vision. She does have some peripheral vision which allows her to see a little, colored shapes so she is pretty good at not bumping into things, but she can be not 30 feet away within eye shot and she can say, "Daddy, talk to me so I know where you are..."

The other day, I handed her a quarter. She never looked at it, she carefully felt it with her fingers and said, "Thank you for my quarter, Daddy."

So with a sigh, I simply say...Abby is blind, and ask, okay, now what?

Well, next is a trip to yet another specialist, this time a neuro-ophthalmologist, more meetings with Conant school, maybe a few trips to a counselor, teaching her braille, etc, etc, etc...

The sprint for a diagnosis has become a marathon of adjustment...so everyday, with every decision, I ask two simple questions to help me stay the course. First, are we doing the right things for Abby? And second, does it help improve Abby's life?

Let the journey begin.

Splash of Water in the Face.

Today we went to Walmart.  Abby was very clingy. Much more then she has been and I found myself getting very frustrated with her. She didn't want to just hold my hand she is 6 and was being a kid but a kid that wanted to hold her mother's hand because she can't see a lot of things.   Then there was a moment when Abby couldn't see me and  I was about 5 feet in front of her.  I felt so bad I didn't think right away what I was suppose to do.

How does one learn to be a mommy to a little girl who could see  a few months ago but doesn't really now?  I feel like a horrible mother.  Isn't it suppose to be instinct. I should know just what to do. We have lived our lives a certain way for year and now I need to get know how to be Abby's mother in a whole different way.

Detective Abby

I have realized my bright little girl is a detective.   It has started to become clear that Abby doesn't see the details of peoples faces anymore.   She says she can see her parents faces very clear (which is very sweet)  Everyone else is very hard to tell who they are by their faces.  She has started to use clues to figure people out.  Clothes, hair color.   We were walking to the car after school and passed a girl with a poofy hair and Abby saw her and said hello. She knew who she was by her hair shape and the clothes she had on.

She says some people are easier to figure out then others.  If they have uncommon shape or color to their hair she has the most luck with them.  Its amazing.  She doesn't think must about it she just does it. She also has a really hard time talking about it and these details come out slowly.

So its amazing and really sad at the same time.

Its simply isn't fair.

I realizes this is an irrational rant.  Its never fair when bad things happens to people. Its doesn't make it any less true.

Abby is an amazing little girl that I am so proud of.  She has always been a good friend.  She is sweet and caring.  She isn't perfect but that is part of her charm.  She is sassy and opinionated. She is a risk taker.  When she decides she is going to learn something she keeps trying till she does.  I love my little girl.

First grade is hard enough without having to deal with not being able to see your friends on the playground and feel alone.  Its not reasonable to expect her classmates to realize that Abby can't see them and to seek out her.  

The excitement of learning.

One of the things I love about being a mother is watching my children learn. I love it when their eye sparkle when they finally understand something.  Sometimes I forget in all this that Abby is six.  She is in first grade.  She is still learning things for the very first time. Basic simple things. (as for learning to read which is a real struggle since she need letting magnified large to see them)

She shared with  me today how she finally tell the difference between a nickel and a quarter. She was so excited.   She showed me how she felt them and noticed how different they were. Abby is learning.  The pride she had is the thing mom's run on.

I showed Abby a coin in the middle of the palm of my hand.  She told me while she could see the hand she didn't see the coin.  Thats remarkable.    She adapting already to experiencing the  world in a whole new way.

I am so proud of Abby and I am sure we will share many years of learning excitement.