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, […]


Sam had a bowling party this weekend, honestly we had no idea how or if this was going to work as we have not taken Sam bowling since he lost the ability to walk, but it was one of Sam’s best friends so he really wanted to be there. I anticipated pushing Sam in his […]

First Day of First Grade

Today was Sam’s first day of first grade. I spent much of the day sorting through paperwork that had been neglected all summer, impossible to get to with 3 kids at home. One form, the ‘Tell me about your child’ form that we get at the start of the new school year for each of […]