Thick skin

I have read that being the Parent of a child with Special Needs means you either become a hermit or develop thick skin.  I admit that the girls and I have been keeping a low-key profile for the past several months and staying home a lot.  Part of that is the planning and coordination that it takes to get 2 young children out of the house and go somewhere, especially considering that every thing is a 30 minute drive from our house.  The other part of that is not knowing how to cope with the pity glances from other people.  I don't blame them as I am sure they are more curious than anything considering that Reagan's diagnosis is not one that can be easily figured out from her appearance.  She can appear to be a typical 2 year old, until you notice the arm braces that stop her from mouthing and also realize that she can speak no words back to you when you say, "hi, what's your  name."

Lately, however, I have been trying to take them to more playdates, or just to the store to do a little shopping.  Sometimes things go as planned and I leave feeling confident and reassured that we can live a "normal" life outside of Rett Syndrome.  And then there are other times.  Like today when we joined some friends at an indoor inflatable gym.  I have to first push down my pain of seeing other children run around and play, laughing and giggling.  I am getting really good at disguising those feelings.  But, if one thing goes wrong and reminds me of the painful journey of Rett Syndrome, the floodgates of tears just might open.  Reagan did not enjoy being there today and made it obvious.  Yes, she is still a 2 year old and I hear from parents of typical children it can be a difficult age.  Nonetheless, the playdate today was a big fat fail.  I am hoping that Reagan was just having an off day and we can attempt it some time in the near future again.

One cheerio

That's all it was...one simple cheerio that I found after sweeping underneath our couch.  It was a painful reminder that Reagan used to be able to, and really loved, to feed herself cheerios as a morning snack before breakfast every day.  We would pour her a little bowl of cheerios, she would take a few and feed herself while walking around, quickly coming back for more.  Nevermind that she never quite got the skill of using her pincher grasp (finger and thumb) to only take one and used her whole hand to rake about 10 in her mouth.  I would sometimes get frustrated over the million cheerios that she would leave in her wake, scattered all over the living room.  But seeing that lonely cheerio hiding under our couch today made me realize how much I miss those moments, seeing her do the simplest of task that she has since lost because of Rett Syndrome.

Stroll Across Texas

Hello family and friends!

As most of you know, our 2 year old daughter, Reagan, was diagnosed with Rett Syndrome in January.  Rett Syndrome is a debilitating neurological disorder diagnosed almost exclusively in females, affecting approximately 1 in 10,000 live births around the world.  It has taken away many of our hopes and dreams for Reagan.  She cannot speak and has lost the purposeful use of her arms and hands.  We are fortunate that she is one of the few girls affected that can walk, however it is possible that she will eventually lose this ability as well.

Since Reagan’s diagnosis we have become members of the International Rett Syndrome Foundation (IRSF), supporting its goal to find a cure or treatment.  And a cure is possible!  Scientists were able to reverse the symptoms of Rett Syndrome in lab mice in 2007.  However, funding is crucial for continued research…and this is a great time for fundraisers because the IRSF will receive matched donations throughout 2010 via a grant funded by Pioneer Fund.  So, every dollar we raise is matched!!

The Strollathon is IRSF’s signature event and is similar to a 5k (think Race for the Cure) but is only a mile in distance, and it’s a nationwide campaign.  Each year the campaign increases in size and participation, and with Strollathon events taking place in many cities this year, the “Stroll Across Texas” campaign has been born.

The Stroll Across Texas includes events in Austin (chaired by me and Wes), Amarillo, Dallas, San Antonio and the Valley and culminates in Houston with a live concert at Dosey Doe by "The Boys Are Back". 

The Austin Strollathon will be Saturday, September 18^th at 9am at Lake Walter Long Park.  Although we will have support and guidance from the IRSF, we don’t have any real experience in coordinating fund raisers like this…and as you know, the success of any specialized event like this is largely dependant upon word of mouth and participation of friends and families, so Reagan, Lauren, Wes and I are asking for your help to help raise funding and awareness. How, you ask?

1)       Become a team captain for the Austin Strollathon.  This involves organizing a team with as few or many people of your choice to raise funds and awareness.  All members of your team do not have to participate in the walk on the day of the event.  Please contact me if you are interested.  Naturally the more teams we have, the more opportunity there is to raise money.

2)       Join “Team Reagan” at http://www.firstgiving.com/reaganconroy

3)       Locate and/or suggest Corporate donors.  We will need refreshments, decorations, a DJ, and possibly a photographer.  The corporate sponsor donations will assist in paying for these items so that all money raised will donated to Rett Syndrome. Again, please contact me with this information.  The IRSF has a website with more information for sponsorships.

We are looking forward to this incredible opportunity and doing it again next year and every year until a cure is found. We hope you are able to join us so we can share this experience with you and make the Austin Strollathon a huge success.

Splash Park fun

Today we adventured to a local Splash Pad/Park for some fun in the sun.  I have to be honest, going new places with Reagan always give me some anxiety for a couple of reasons.  First, I don't know how "Reagan friendly" it will be.  Meaning will it be easy for her to walk around without falling much.  Second, I always get a little uneasy about how other people will respond to her.  Will they be friendly and accepting of her social butterfly ways, unfamiliar with personal space.  Well, todays park was a huge success and we will definitely be going back more, and hopefully often!  The parking was right near the splash pad, the water area was perfect for Reagan and she had so much fun walking around!  There were not a lot of people but those that were there were very friendly with Reagan when she went up to say "hi" over and over again!  And of course Reagan was rockin' her Princess swimsuit!  It was a great way to start a week!

No weight gain

Okay, let's forget that I just posted the other day about being completely happy.  Now I am just frustrated.  Reagan had an appointment today with her Nutritionist and there has been NO weight gain since her last weight check four weeks ago.  It is so incredibly disappointing and frustrating to see her not gain any weight when I am feeding her heavy whipping cream by the spoon full as well as hot dogs and tons of cheeses.  What does this girl need to eat to gain weight?!?  I suppose the positive is that she is still in the 25th - 50th % for her age group and that she has not lost any weight in 4 weeks.  However, her Gastro Intestinal Doctor's voice looms in my head, "she must gain 3 pounds by her next visit in October."  Okay, that now seems impossible so then what?

Happy Independence Day!

I hope everyone enjoyed their holiday weekend!  Thank you to all the men and women (present and past) serving in our military.

One of the many fun things about having 2 little girls is getting to dress them alike and then torturing them with pictures.  Needless to say, they were not amused by Mom sitting them on a bench in 90+ degree weather on July 4th just to take pictures.  Here's the proof:

Reagan says, "I will NOT look at the camera!"

"Can you believe she is doing this to us?"

"Maybe if I just give her ONE smile she'll get that thing out of my face!"

And my personal favorite..."I'm warning you Mom!"

Happy place

I have definitely been in a happy place for the past month or so.  I think part of it has to do with acceptance of Reagan having Rett Syndrome and the other part is just learning to live one day at a time.  I feel that Reagan and I are more bonded than ever and have so much fun together, whether it is lounging on the couch together watching her favorite tv show (Wheel of Fortune, of course!) or playing in her room and giving each other kisses.

There are still negative and unhappy thoughts that creep up on me from time to time.  I try really hard to push them back down and am successful more times than not.  I have those thoughts when I hear of another Rett Angel getting her wings.  Also, when I get an email from the Rettnet listserve and a Mom referred to her Rett daughter as being a woman.  I have the realization that Reagan might be a woman with Rett Syndrome even though I can only picture her in her early teens with this horrible disorder.  I will not lose faith that a cure is within the next 10 years and then she can have all the fun of a typical girl in her teens and 20's.  The thoughts flash ahead at full speed when I see a typical 2 or 3 year old in a children's clothing store and she is running around and helping her Mom pick out new clothes.  But, these thoughts will no longer get the best of me and I will appreciate the things in life that I have to be thankful for, a loving and happy family.

In other news, Reagan has been doing wonderful for the past few weeks.  She walks so well, babbling constantly, picking up toys along the way, and stopping to make eye contact and give a kiss.  She has been on a l-carnitine supplement for the past few months so we are not sure if we are seeing the positives of this supplement allowing her to be more aware and alert or if she is leaving the Regression stage of Rett Syndrome and we will consistently see an upswing.  But, it has been wonderful!