Friday, October 29, 2010

The Purple Card

Not long after we got Reagan's diagnosis I joined an organization called Girl Power 2 Cure (girlpower2cure.org).  It's a non-profit organization founded by a Rett Mom to raise funds and awareness for Rett Syndrome.  It is through this organization that I ordered what is referred to as "The Purple Card."  These are cards that I hand out when I am out with Reagan and I know that people are curious of her condition.  I will be honest, I am terrible at describing Rett Syndrome, the words just never seem to come out right.  However, this card takes care of that for me and eloquently describes it so that I don't have to fumble over my words.

A few weeks ago I took Reagan to get fitted for a new pair of shoes.  Obviously the sales lady had a lot of direct interaction with Reagan and I knew she was curious but would never ask.  So, as I was checking out I handed her a card and told her that it explained my daughter's condition.  I thanked her for being so kind and she thanked me for sharing Reagan's story.  I left feeling so happy because I knew that on that day two more people (there were 2 clerks in the store) knew of Rett Syndrome.  Here is a picture of the card:

Wednesday, October 27, 2010

Words that hurt

First, I will admit to being guilty of doing the exact thing that I am about to rant about.  But, that was when I was a kid and had not learned to be completely compassionate; before I learned that words can be so hurtful.  And it was definitely before I had a daughter that has Rett Syndrome.  

It is very hurtful when people make comments about the "short bus" or use the word retarded in a flippant way, or even say that their child did something and it made them look like they were "special".  All of the above has happened in the past several months, although nothing has ever been said directly to me.  It has been things that I have come across that other people have said online, not knowing that a parent with a special needs child would be coming across their words.  These comments really tick me off and I am not always so good at not calling out the person for being so insensitive of people that don't fit in society's definition of normal.  My daughter will be going to a special needs class next year, and she might even be riding the short bus.  My daughter's diagnosis has in the past been misclassified as one who is mentally retarded, although that has been disqualified now that children with Rett Syndrome have found ways to communicate and can show that they are intellectuality able, just trapped inside their little bodies.  And the way my daughter walks is clearly not perfect, she probably looks "special".  But I am thankful for ability to walk and love the special things about her.  


I challenge all of you to remind the person that might make comments of this nature that they are not funny.  That comments like this hurt people and makes it look like being a special needs child is a laughing matter.  I'm not longer laughing at the crudeness of these comments.

Thursday, October 21, 2010

Puppy love

I took this video of Reagan playing with our dog, Emmitt, a few weeks ago.  She loves her dogs a lot and has always gravitated toward them when we are outside.  The feeling is very mutual and I remember Emmitt being protective of Reagan when she was a baby.  I hope all of the puppy licks doesn't gross any of you out! :-)  Oh, and again sorry for the poor video quality as once again I used my cell phone instead of the brand new video camera that was sitting on the kitchen counter.

video

Sunday, October 17, 2010

Screaming fits

The past week has been a difficult week for Reagan.  She has been more tired than usual during the mornings, although not much has changed with her sleep pattern or medications.  She has had more screaming fits than I can even count.  I don't know if the screaming is just another fun RS symptom, pain related, frustration from not being able to talk, or just a 2 year old thing...or maybe a combination of all the above.  We try to comfort her when she is upset but it only seems to upset her more.  Most of the time the only thing that will calm her down is her favorite tv show and there were a couple of days where even that didn't work.  I look forward to the day when she can communicate with me to voice the pain, frustration and choices that she would prefer.

Tuesday, October 12, 2010

Strollathon totals

The numbers are final and the updated total money raised from the Austin Strollathon is $19,211!!!

I am so appreciative and amazed by the outpour of support for our first fundraiser.  I am touched by the people that got involved in helping making this event a success because I know that it could not have done without them.  The hope for a cure is my saving grace on the bad Rett days.  The biggest obstacle in getting a cure is the funding of research for the brilliant scientists in the lab that are working hard every day to help our girls.  This fundraiser supports them and the IRSF in reaching that goal so thank you to the amazing people that donated, volunteered, coordinated, walked, sang, and spread the word about Rett Syndrome!












Monday, October 11, 2010

Pumpkin patch

We are really enjoying the cooler temperatures and love this time of year.  We have been taking advantage of the beautiful days by going for long walks, sometimes twice a day, and sitting in the front yard on a blanket and playing with the dogs.  The cooler temperatures are great for Reagan, besides the obvious that it is just more enjoyable to not be hot.  Because of RS she is unable to regulate her body temperature very well.  She gets overheated very easily and will then cry inconsolably until I can find a way to cool her day, not that I am speaking from experience!  It was frustrating (probably more for her!) because I had no idea why she would start crying (it just started this summer, guess it's part of the great Regression stage) and of course didn't know what to do for her.  I came across another Rett Mom's blog about her daughter overheating and finally put it all together.  Point is, in the summer time we are very limited in our outdoor activities since Austin is known to have record number of days that are above 100 degrees with unforgiving humidity!

So, off to the local Pumpkin patch we went to enjoy the beautiful day and take some fun pictures!  I didn't get many smiles for the camera because Reagan was not that interested in smiling and Lauren was not so sure of all the pumpkins, they're scary ya' know!