Every year that passes is a reminder of how far we’ve come and how far we are yet to go. The one thing that 2018 was about for us was focusing on living instead of hoping. We are still optimistic Continue Reading
Magic, Unicorns and Cupcakes
In our life, everything isn’t magic, unicorns and cupcakes. We just do our best to make sure our kids are enjoying themselves and hope the rest will come from there. Maggie turned 8 this past weekend and that brought a Continue Reading
Gymnastics
When soccer season ended last year, we weren’t sure what to do. We want Maggie to be involved in all of the things we were involved in as kids – sports (AJ & Jenny), dance (Jenny), cheerleading (AJ), whatever she Continue Reading
My new piece on Maggie’s style
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
