Meet the McNeil Family

Meet the McNeil Family

Friday, February 12, 2016


I recently attended a gathering for women where the topic of sacrifice was discussed. I enjoyed being amongst women who could respect choices - decisions to stay home, work full time, go back to school, leave unhealthy relationships. We don't do this enough. We don't look past our own experiences to realize that others make different and valid choices.

I have often thought about the time since Waverly & Oliver were diagnosed. I chose to defer my plans - going back to school and embarking on a career. I *gave up* my dreams. I chose to be a full time stay at home mom. I thought it was my sacrifice.

After I left the woman's group, I sat on this thought of my sacrifice. Watching the arc of Waverly's life - being there from start to finish - I realized that I sacrificed nothing. I gained everything.

Wednesday, February 3, 2016


I love Anne of Green Gables. I remember reading the books and then watching the miniseries when I was a girl. In college, I would seek out fellow lovers of the series and we would binge watch Anne of Green Gables and Anne of Avonlea on a snowy Saturday.

One of the most romantic gestures thus far in my marriage was in 2001 when Matt and I were working for NCHS in Utah. For almost four years we traveled around the country moving from hotel to hotel every 9 weeks. We drove through 47 of the lower 48. (Why we didn't venture up to North Dakota to knock it off the list I will never know.) It felt like an adventure, but looking back it lacked community and ushered in a difficult time in our relationship. However in a Marriott hotel in downtown Provo, I came home from work to find Matt had rented a TV/VCR combo for the night and bought me the Anne of Green Gable: The Continuing Story VHS set. I was able to spend a few hours watching a (mediocre) story play out whilst eating a favorite meal. Total bliss.

In 2013 we were able to take a dream vacation to Prince Edward Island, the setting of Anne of Green Gables. I vividly remember driving across Confederation Bridge from New Brunswick. I hit play on my iPhone and we listened to the AofGG soundtrack as we entered PEI. We took the kids to Green Gables, toured the house and walked the Haunted Woods. We visited Lucy Maud Montgomery's grave and homestead. We walked the north shores and found sea glass.

When Waverly entered her final weeks and hospice was called, our family spent a lot of time in our living room. It has a lot of windows and bright sunny yellow accents. We put yellow tulips in vases and balloons by the sofa. Wavey was cuddled up on the couch with fuzzy socks and soft blankets. And to break up the quiet, we often played music. Whenever I had control of the Bose, I played the Anne of Green Gables soundtrack. It was instrumental and calm. It was reminiscent of my childhood, my dreams of a daughter and our dream vacation with my family.

The past week I have been incredibly grief-stricken. My bed has been my refuge. My motivation is low. I am clumsy and forgetful. In an effort to try to do something, I took a book about grief to our local Starbucks for a coffee and a change of scenery. I was surrounded by people having conversations, so I put in my ear buds and hit play. Instead of the podcast I had just been listening to or the playlist I sang along to in the morning, the Anne of Green Gables soundtrack began. Instantly the tears poured down my cheeks. All of the memories came flooding back and I was overcome with emotion. I miss my little girl.

I miss her giggle as I said "good morning, sunshine" each day. I miss the way a smile would spread across her face and her eyes would light up when she saw me. I miss her soft tummy as I accessed her feeding tube to administer her meds and food. I miss brushing her hair and the little cries she also made because she hated when we would do her hair. I miss the weight of her wheelchair and the way the wheels would catch as I pushed her up the ramp into our van. I miss watching her stare at Oliver as we would drive. I miss the princesses she would hold in her hands. I miss prepping her overnight feeds. I miss smoothing her hair as she sleeps and hearing the slight snores of happy dreams.

I hate using past tense when writing about Waverly.

It's been 11 weeks today.