I wrote another article for Rett Girl magazine and I hope you’ll give it a read. It’s been hard to try to figure out Maggie’s own personal style, since both AJ and I have our own ideas about what style Continue Reading
It gets easier.
I remember talking to some families when Maggie was first diagnosed who would tell me “it gets easier, though it may not get better.” I didn’t fully understand what that meant at the time, but I’m starting to now. When Continue Reading
Being her voice
I read a news story recently that frustrated me to no end. It reminded me how far we have to go to get to real understanding of patient rights and saddened me for this family. A girl, living with Rett Continue Reading
Reverse Rett LA
On October 13th, the Rett Syndrome Research Trust’s largest annual fundraiser will take place in Los Angeles. Jenny and I are co-chairing this year in addition to chairing the auction. We have set a goal of raising $1MM at this Continue Reading
I’m running a triathlon for Maggie
I have seen people run races for causes. I have heard that this is a thing people do. But I am not a runner. I am not a biker. I am not a swimmer. I am just a dad who Continue Reading
How to Concert
Whenever we want to do something big and fun that typical kids get to do, it takes careful planning. We spend most of the time wondering if we’re crazy for making her do some of these things, and the rest Continue Reading
It’s been a long year
I haven’t sat down to write a blog about Maggie since December. That’s actually not right. I have sat down to write, but I didn’t know what to say. Jenny took up the reins and she kept you all updated 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
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
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
