So what's been going on with us.......in reference to my last blog, we decided not to put Haley in pre-K. She finished out her time at Special Kare (her preschool since she was a baby). It was definitely the best decision for her. She needed more time to develop some of her skills in a comfortable environment before moving on to kindergarten.
Her therapists and special ed staff are incredible. She still gets all the therapies she has always gotten, speech, physical, occupational, vision, and special education. Her speech has made a tremendous improvement. Her balance and coordination, although still a little "off", has also improved. She LOVES P.E. and recess. She is attending dance class for the second year now. We were afraid that she would get frustrated and want to quit dance, but she is excelling in her own little way. How silly of us to think she would actually quit something. She is a fighter and she never quits!
Race for R.A.R.E. I had envisioned this race for 5 years, and finally made it a reality last year. R4R is a project I created that operates under my other brainchild, Jog for Joubert Syndrome. R4R benefits the Joubert Syndrome and Related Disorders Foundation, as well as raising awareness for all rare diseases. This year was a huge success! Haley loved it and has declared that she wants to be a runner. She became very upset after the start of the race. I ran with her for the first 100 yards or so and she started to cry as the pack pulled away from us. She wanted to run the race too. But she quickly got over it and made her own little race, running through the finish line a million times with another little girl also affected by JS. In time my dear, you will be running this race too....in it's entirety!
running adventures. A very special gal named Michele happened to be at my race this year and instantly fell in love with Haley. Thinking about their connection now, I see a similarity. You could judge a book by it's cover with these two. At first glance one might see Haley's differences and assume she is weak, however on the inside she is a tenacious fighter, stubborn to the core, and refuses to give up. Michele is much the same way. She is a tiny little petite thing, with a bubbly personality, and as sweet as can be. You may assume this chick isn't very tough, but she is tough as nails, tougher than almost anyone I know. She runs ultra marathons (beyond 26.2 miles), and she has completed some really really REALLY tough races. And she is about to do something even more amazing. Michele, and her partner in crime Drew, will be embarking on a 200 mile run over the span of 4 days on the Foothills Trail. A feat that has never been accomplished. And she is doing so in honor of Haley. She is graciously raising money for her and the JSRDF. Her journey begins April 25th, 2014.
donation page for Michele's journey. For those new here, feel free to browse through Haley's blog. This blog, literally, documents her entire life....up until I became a