Sunday, July 3, 2011


I heard through the grapevine that it is a holiday weekend.  As usual, this holiday weekend is the same for us as any other weekend, with us doing a lot of nothing and staying around the house.  Why?  It is too difficult to do things that typical families do on the weekends, much less a holiday weekend when those same locations will be crowded and the settings more unpredictable.

Reagan is 3 1/2 and apparently in that stage/age of Rett Syndrome, not much can make your girl happy.  I can tell you what definitely does not make her happy, public outings.  Okay, maybe that is not completely true because there have been times when we are out and she is perfectly content.  But, those times that she is not burns such a hole in your memory that you forget all other positive experiences!  Maybe when she is 5 or 6 (which I've been told is the magical age of calmness for Rett girls) we will be able to do more family outings.  It will also be easier then because Lauren will be older and more independent and Reagan will have a wheelchair for when she is tired.

So, Happy 4th of July to all and don't worry, we'll celebrate Independence Day in our own way by firing up the grill and letting the girls play in the kiddie pool!


  1. Hi
    My name is Jenna and I came across your site. ur daughter is a courageous, strong, and determined fighter. She is a brave warrrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and love it when people sign my geustbook.

  2. I remember those days. A 5 minute trip to the store would be impossible because Annie would be screaming and thrashing and people would look horrified at this poor little girl that looked as though someone was torturing her. We turned into hermits - only able to go to visit select family that understood. I'm here to say it DOES get better - for Annie it was around 4 or 4 1/2 - of course like any kid we will have our tough outings but for the most part she LOVES to get out and do things. Praying next 4th is more festive for you! Have fun splashing and BBQing :) HUGS!

  3. we TRIED once again to take Avery to our country club 4th party last night. we had the sitter ready to come pick up but wanted her to at least come with us and have some ice cream. she lost it in the parking lot. it was 100 degrees, i was sweating, she was sweating, people were staring. it sucked. luckily the sitter came a few minutes early and Avery was happy as a clam. i cried for a second or two. I just wanted to give her the chance....i hate it all so much!

  4. It is true Dawn, I do think you are toward the end of the hardest part. Good for you for at least celebrating in your own way. The last two years have been brutal, but this year, a miracle happened and we had a great 4th. I know that there are many to come in your future :-) xx

  5. We went through the same thing with Abby. When she was 2, she would scream and bite. By 3, she would just scream and cry inconsolably. By 4, she started to sleep a lot when we went out. I guess its her way of dealing with all the chaos/crowds/noise. It does get better over time. Don't worry, you will have better holidays in the future. Hang in there! Hugs:)