Wednesday, March 9, 2011

Alexis' Story in the Boston Newspapers - Lobbying for Deafblind Services

Because of Alexis, our family has entered into the world of deaf-blindness and medical needs. 
Someone said today, our son has a special family.  So instead of saying I have a special needs child, I am going to start saying

Because of our special family status - I was asked to go to speak at Massachusetts State House.  I made people cry, I'll readily admit that.  Two total minutes of talking and not a dry eye in the place.  I realed the audience in with my well practiced and appropriately placed voice cracks (just kidding, I was trying hard not to cry myself). Nothing says tear jerker like balling speaker.

I wrote the "speech" at the coffee shop across the street, which is pretty bad planning on my part.  Basically I said something like this (I don't remember what I said word for word because I only wrote a couple of words down in my "speech")
I brought a photo of my 5 year old, Alexis.  She wears cute little pink glasses and hearing aids, attends Perkins and is learning her numbers, letters and colors - everything that a normal preschooler would do.  She brightens the lives of everyone she meets. 
But her life isn't really that simple.  Alexis fought to be here.  Her identical twin sister died when I was pregnant.  Alexis had to fight for her life.   Because she fought for her life, we fight for her life, we fight for her safety, and we fight for her services.
Please do whatever you can to make sure services exists for Alexis as she needs the opportunities our world can offer her.  She is fighting to be here with us.
And then I ran to my seat.
Here is an official newspaper version of that story

Since I'm sure you all clicked on the link and then came back to my blog.  I wanted to add a small editorial to the article - Jaimi Lard.  So in the United States, at some point in our public education process, we all study Helen Keller. We may even read books about her, or just watch a movie.  But the point is more Americans probably name Helen Keller than we know Presidents.  If you've never had the opportunity to see a person communicate with tacticle sign - you aren't living.  It should be on everyone's bucket list.  Sign Language was developed for sighted hearing impaired people.  It was modified for deaf-blind to be a means of communication in the "hands".  When I first saw Jaimi at Perkins, I cried.  I think Alexis was 2 or 2.5 (still very little).  Seeing Jaimi told me "Alexis has a great future in front of her with the right services".  And everytime I see Jaimi and others using tactile sign - I am in tears.  It's a very specialized language developed to help people reach their full potential.  It is absolutely amazing. 
(here is more about Jaimi -

I am absolutely thrilled that Alexis' story is in the same article with Jaimi.  This is the potential future for Alexis and I'm thrilled that I can help make the road for Alexis.  


Jaimi Lard said...

Dear Catherine,

Happy Thursday. I love your wonderful story about Alexis.

Thank you very much for sharing this special story.

Have a great day!


Kurby Family said...

Beautiful story! You are an amazing mom, advocate, and special family! Great job!