When they say, “take care of yourself,” or “get enough rest,” it is a real thing. Life has just been a roller coaster lately. I’m trying to take care of myself and rest, I’ve been… Read more

I am full of sadness today. It hit me like a sniper. My plan was to drop kids off at school, work out, go to a meeting and then to order a cake for Max’s… Read more

My miscarried baby was due the day of my sister’s funeral.   If that alone was how life happened this year; we would agree that is enough.  Instead of spending September 30th with my family,… Read more

We’ve just made it home after spending a couple of days in Washington, D.C. where we attended and testified at an FDA advisory committee meeting for the trial drug Ataluren. All three of our boys… Read more

The first eight months of this year have been hard.  Lots of challenging news, too much loss, and the healing aftermath. I have not shared it all.  I’ve often been told I have a gift… Read more

It is one of those days.  One of those days that I just can’t do it. CAN NOT DO IT. Started off in Grand Island to pick up new orthotics for the boys. Let me… Read more

It is beautiful here today.  The sun is shining, there is a gentle breeze and the temperature is perfect, it is calm and peaceful.  I was walking earlier and remembered a poem I had written… Read more

When my son was little and cried he would tell me that his eyes were leaking. I’ve always remembered it.   Although this year is only half over it has been a year full of… Read more

I’m living a life full of experiences that have left me on my knees asking why, crying for answers, just wanting to understand. Answers don’t always come in pretty packages.  Sometimes there are no answers.… Read more