Vegas baby.

Earlier this week, Sam spent a quick 24 hours in Vegas for the SiriusDecisions VWMFF 5K. We had a particularly good experience this time staying at Mandalay Bay. We took Sam to the pool when we arrived, it was 100 degress and we left the wheelchair out in the sun while we went in the […]

5 years.

5 years. 5 years ago today we were told Sam has Vanishing White Matter disease and in an instant our lives changed forever. Sam has no memory of what life was like before VWM and we can barely remember a time when he could walk or run or even stand anymore. This is always a tough […]

Halloween 2017

For the last 4 years, ever since Sam has needed a wheelchair to get around, I have been making him somewhat elaborate Halloween costumes that always include his wheelchair. It is a lot of work. I start at least 6 weeks before Halloween and spend countless hours making these costumes. A lot of people wonder […]

Facebook flashbacks

Facebook flashbacks…I love them and hate them at the same time. This was only 5 years but feels like a lifetime. I had been on my own for 6 weeks before this while Nick was in the UK and I was waiting on my visa. I remember feeling like my life was so impossibly hard […]


Last weekend we attended the United Leukodystrophy Foundation conference (VWM is a form of Leukodystrophy). This is the 3rd conference we have attended since Sam was diagnosed. Usually we go because it is a great opportunity to talk to the doctors and meet other families that understand what you are going through. We have always left feeling […]

Don’t Cry When I Die

Putting Sam to bed a few weeks ago I told him I loved him and would always be there when he needed me (he was a bit reluctant to go to sleep that night for some reason, hence the reassurances) and he responded “but, don’t cry when I die.” Needless to say, that knocked me for a loop. It took everything I […]