Join our Celebration

We are going to celebrate.  A celebration of Abby and everything she has over come this year in school.  A celebration of Sam an amazing little boy who has been so supportive of his little sister. A celebration of all of  us of making it through year 1.  We are Team Abby.

So if your in NH join our celebration at the New Hampshire Association for the Blind's 8th Annual Blind Awareness Walk-A-Thon on June 4th in Concord NH.  Join our Team or make a small donation.  You could even start your own TEAM (for many different reasons).  If you are from a different state look for another event run by a different organization in your state.

To Register to walk in the NHAB Blind Awareness  follow the links and the registration fee is $15.00 for Adults and $5.00 for children. It includes t-shirt, lunch and entertainment.

Celebrate.

Some things seem worse at first. ...

I was watching Bones (its a television show)  Thursday night.  One of the interesting story lines of night was two of the characters who are expecting a baby in a few months deal with being carriers of LSA (the other Leber's genetic disease , unrelated to what Abby has), Its a disease that ussally causes complete blindness.

 Halfway through the viewing I heard Abby yelling for me. She was not feeling well at all. She had a fever and was feeling icky.  I got her some medicine and she can out to sit with me while I finished the show.  She heard the two parents talking about the chances their baby could be blind.

Abby first asked: Why they are upset and sad?

My first response was they were worried about their baby being safe.  Abby said "Then the baby  could just use a cane"  
Then I responded  that the parents where sad about all the things the baby wouldn't have a chance to see and the struggles with learning. She understood that one but sort of shrugged her shoulders and implied it still wasn't a big deal. I don't think she implied its not heartbreaking to deal with a child (or to be that child) who is blind  but she also didn't' see it as the end of the world ether.

Abby sees her completely blind peers as amazing.  She also know that blind people can do amazing things. I am always sure to share with her positive blind and visually impaired role models.

I recalled earlier in the program.  (before Abby woke up) I watched at they talked with almost hushed tones that the baby could be blind.  I kept finding my self thinking. "Oh common on its not that bad". Then I remember how devastated I was when I found out about Abby vision loss.  The fear, the pain and sadness.  It like I was walking around in some fog.  I still cry and get sad. Dealing with vision loss is like a death in the family and you never quite get over it.  In the beginning you deal with not only the grief but the unknown and sometimes the unknown is be very overwhelming.

I am grateful for the vision my daughter still has but even if she ever became completely blind It not the worse thing that can happen by far.

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about the "other Leber's" http://www.wonderbaby.org/articles/lca-faq.html

Abby's "Leber's"  http://www.lhon.org

Fantastic Day!

Its rainy yucky weather outside and I  a horrible cold but today is a fantastic day.

Two big things happened today for Abby.

Her class has 'library' once a week.  Some weeks at library is actually computer.  The kids learn early computer literacy skills.  Today her TVI made a computer accessible to Abby with an magnifier and text to speech software. (Zoom text with reader)  Abby is so excited.   I can't wait to set a computer up for her at home.

The other very special thing today is Abby brought home two books she has read at school.  Let me say again. Two books Abby has read at school.  They Brailled some early readers for Abby and she has been READING them. They are the simple repeating books but she is READING them. A reader. Abby.  I am so happy.  Overjoyed. What a special achievement for her. I am so proud  of her. With some more practice she will be breezing through books.

Finding my way out of the maze.

Me with my hero Abby.

The last few months have gone by so quickly.  I feel like I have been running around trying to find out information and I got lost some where from underneath it all. I am hungry for information about Abby condition, about other children who have visual impairments, about other children learning braille, navigating the special education services, looking for related organizations, and information about programs and services out there that can be of help to us.  

I have found so many great things: A community of people who are affected by the same disease, other parents of blind and visually impaired children, organizations that supply free Braille books and becoming part of organizations that are related so Abby and I don't feel so alone in this world. 

Sometimes I feel overwhelmed lost in it all.  I feel like I have missed so much. That I am simply not doing enough. Today almost 5 months from our diagnosis I am still find useful and relevant information. 

I am a parent. Its my job to help Abby navigate through all this so that she has all the tools she needs to be a success.
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I have updated all the articles on the top bar (ie Through Abby's Eyes, Resources....)

Legacy of Blindness.

One of the interesting aspects of the disease that affects Abby is that its a mitochondrial genetic disease. Its actually very easy to follow it in ones family.  Abby got the gene from me, I got it from my mother, my mother got it from her mother and so forth.  While males have a greater chance of becoming affected they can not pass it on to their children.  Females pass it on to a 100% of their children so that means that my son has the gene as does all my sister and their children.

I have been come very interested in tracing the path of LHON in my family.  Trying to track down other related people who could become affected and/or pass it on to their children.  I wish I had known.  I am thankful having a family history to go us to our diagnosis quickly.  It takes some people months to even years to get a diagnosis.

My Grandmother Ruth with her Guide Dog Anna

Many people who have the gene do not have a known family history of vision loss.  I did.  So little was known in my family about this that I didn't even connect the dots that it was something that should concern us.  Everyone thought the reason for my grandmother blindness was completely unrelated to the cause for two of her sons going blind in adulthood.

On June 26, 1957 my grandmother graduated from the Guide Dog Foundation for the Blind. A newspaper story from the time say she was the first graduate from NH.  I don't know if that was correct but  she was definitely one the earliest.  Its quite a thing when have a daughter who has become interested in guide dogs a lot recently.

a snippet from a a news story.

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Guide Dog Foundation - http://www.guidedog.org

LHON.org - http://www.lhon.org/

Mobility Abby Style

One of the biggest challenges with helping Abby adjusting to her vision loss has been to teach her to be safe.  Abby benefits greatly with still has what seems to be pretty functional peripheral vision,  Abby has always been my risk taker.  She is always willing to try anything once.  Sometimes thats not a good mix for a 7 year old.

using cane on sidewalk

using cane on stairs

Its not a bad thing ether its just about the balance. Thankfully Abby is getting orientation and mobility training.   As with all her vision loss related instruction she fights.    We show up today knowing she is there to work and really tries to push the limits.  She isn't horrible she just tries to touch everything she can get her hands on and doesn't listen.  One thing I have learned is to walk away.  I leave her.  I love watching her orientation and mobility training but she does better when I'm not there.  

Abby does do well with the cane. I notice she will use it when she feels she needs it.  Sometimes she NEEDS it more times then other times.  Its a process and I know that its going to be another tool to help her be successful.  A cane is not a sign of disability but a sign of independence. 

Abby just looking cute with the cane

My Girl.

So much has changed the last few months but she is still the same feisty lovable girl she was before.  Abby's vision issues added an extra layer to many parts of her life but much hasn't really changed.   She still has a bit of temper.  She can be really sweet.  She is a good friend.   She loves to dress up and be girly. She loves to watch TV (she now just watches it with her nose an inch from the screen). 

I really think less has changed for her then it has changed for us.  Abby has never stopped just living life.  Her concerns have less to do with her vision and more to do with her friends at school.  

She is still just a little girl and my goal is not to get that lost when I am focusing on vision.