Meet the McNeil Family

Meet the McNeil Family

Monday, August 29, 2016

Waverly's Room

We have made some changes to Waverly's room. We were so fortunate to have a Sleep Safe bed for her. It made a world of difference in caring for her and allowing her to sleep safely each night. Plus it gave Matt and I the gift of a full night's sleep. It took some time, but we finally dismantled the bed (with help from my step-dad). A lovely family who also has two children with Sanfilippo Syndrome is came down and picked it up for their son. I am so thankful another family can benefit from this bed.

Wavey's room felt so empty and nondescript without her bed. I still wanted it to be *her* space. So I moved our desk in there. It's the perfect space to sit for paperwork or working from home. I bought a bright pink rug and moved her Yogibos there for comfy seating. I have found myself back there often. It's a new space, but it is still her space.

Sunday, August 21, 2016


Nine months into the grieving process and I have learned a few lessons along the way. An important one being that transitions are tough. Any change going on around me - seasonal change, end of school, preparing for a holiday - is a reminder that I have to navigate it without Waverly. 

I seem to be having an incredibly difficult time with Back to School. Photos started popping up on Facebook from friends in areas where school has already started. The stores are highlighting all of the back to school items. (Which to be honest has always been a difficult season for me. Instead of shopping for school supplies, our lists consisted of Lysol wipes and hand soap.) I had to order some pants for Oliver and when I went into Hanna Andersson to pick them up, I succumbed to tears over all of the adorable fall girl items. I loved dressing Waverly - she had style. Only one letter from school arrived this year. And as all of Wavey's classmates are anxiously anticipating the beginning of middle school, I am left mourning.