When the weather dumps rain all over Los Angeles and dumps snow in the mountains. Sometimes you just need to make a trip to play in the snow. Living in Los Angeles, we are only an hour and a half Continue Reading
20/20
We leave for NYC next week and couldn’t be more excited. Well, we could be a little more excited. Maggie came down with a cold and we are walking on pins and needles waiting to see what happens. But fortunately, Continue Reading
Last Day of Pre-K
With Betsy Devos’ hearing making national headlines this week, I thought it’d be helpful to share why a federal focus on special needs education is so important to us. Maggie “graduated” from Pre-k last summer. She wasn’t there. But she Continue Reading
Goodbye 2016, Hello 2017
https://www.youtube.com/watch?v=2bjEJmDzvMo Everywhere I look, I see people saying 2016 was the worst year. I get it. There is no doubt 2016 was extremely difficult for us. You guys have watched Maggie push through so many obstacles that Rett has thrown Continue Reading
Take a breath
It’s been awhile since we posted anything here. After Rett Syndrome Awareness month, we’re emotionally and physically drained. The event is an intense amount of work, the awareness and videos takes up time too. On top of that, Maggie’s health Continue Reading
Living life
We have so many days that are great. We try to live each day as positively as we can. We are a work in progress but we are trying to find balance in our lives, caring for Maggie, enjoying the Continue Reading
Hand Use Regression in Rett
These pictures are from last year. She won’t hold anything right now. One of the first symptoms of Rett Syndrome we noticed was the hand wringing. It started ever so slightly in her right hand before we even knew anything Continue Reading
Hang 10
https://www.youtube.com/watch?v=Ol5FO-dh-9E&feature=youtu.be It’s hard to know what’s in the mind of a 5 year old. It’s harder still when that 5 year old is non verbal. But when Maggie’s cousins were coming to visit and they all wanted to go surfing, Continue Reading
The 6th and 7th Stages of Grief
“The Kübler-Ross model, or the five stages of grief, postulates a series of emotions experienced in grief, wherein the five stages are denial, anger, bargaining, depression and acceptance” That’s usually in reference to people coping with death or loss. I Continue Reading
The Next A-Rod
Even though Maggie is dealing with a lot, and she struggles through most of her days, she is still a kid. Sometimes that’s hard for us to remember. When you have to talk to a 5 year old about serious Continue Reading
