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 […]

Loss of Another VWM Child

Sam is smiling as always, even at the dentist. Today a fellow VWM child, Isaiah, lost his battle with the disease. The loss of a child with the same disease as yours is always difficult. It is hard to explain, but it feels like losing a family member, even though you have never met. Maybe […]

Last Day of School!

Last day of school! Thanks to the teachers, aides, therapists, support staff, administrators, pupils and families at Glenville School, Sam had an amazing year. We were nervous about sending Sam to school full time and with his peers, afraid that his differences would set him apart in all the wrong ways; afraid that he would […]

Brain Bank Donation

So these arrived in the mail on Saturday. Following the Leukodystrophy Conference over the summer we made the decision to donate Sam’s brain for research after he passes away. The doctors and researchers at the conference stressed that this is one of the greatest gifts we can give, that the information they can get from […]