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 […]

2016 Year in Review

It was a busy 2016. We have had some extraordinary adventures, hanging out with Sebastian Vettel and the Ferrari team in the paddock in Montreal was the experience of a lifetime. An RV trip to Yellowstone and Glacier National Parks and a road trip to the Indy 500 brought Sam’s total of states visited to 30, and Sam’s […]

Christmas 2016

Now that the kids are back as school I have a few minutes to write about Christmas this year. In all honesty, the weeks leading up to Christmas were particularly difficult for me this year. For the first time since Sam was diagnosed, I really started to feel like we don’t have many, if any, […]