Meet the McNeil Family

Meet the McNeil Family

Thursday, January 19, 2017

A Dream

Yesterday morning I woke up before dawn to the sound of Waverly. It was a laugh she had that would morph into a cry, especially in the mornings if she was stiff or lonely. I was dreaming and she roused me from sleep. I sat up and for a millisecond thought it was really her; as if the last 14 months were a dream. Oliver was sound asleep and while very similar, they do not sound the same at all. I had the strangest feeling all day. Rationally knowing it was not her, but secretly wishing it were real. However why the cry at the end? Why a reminder of the pain that was?

It was the 18th. Exactly 14 months since she left this earth.

Waverly is becoming a dream. I vividly remember her. I can still smell her when I open her closet and hold some of her favorite dresses or hug a special stuffed animal. I can see her face in photos in nearly every room in our home. I can hear her laugh when I replay a video on my phone. But I no longer call Oliver Waverly. Or Watson Waverly. I don't go into her room expecting to see her bed. When I open up the drawers in Oliver's room, I am no longer surprised to see Ollie's clothing in them. 

Many of the minute daily reminders have faded. And I miss that they have faded; I am aware of their absence. The dull ache that occasionally roars to the surface is ever present, always with me.

Friday, January 6, 2017

Double Digits


Sweet little Oliver turned 10 years old on December 30th. Double digits are a big deal. His birthday often gets lost in the midst of the holidays. This time Matt took off for the day and we tried to do some things he loves. We started at our favorite bakery and filled him with mixed berry croissants and maple doughnuts. Then lots of Mickey Mouse Clubhouse combined with snuggles on the couch. I made a pot roast and my parents joined us for dinner. We ended the day with his favorite - ice cream.

I have written about the difficulties of birthdays for years. Most parents want time to slow down, but those of us raising children with life limiting illnesses especially want to savor each moment and pause time. As much as I want to celebrate Ollie turning ten years old, I also mourn another year passing.

Our son with an old soul is slowing down. He isn't walking as far as he used to. He would rather snuggle on the couch than bounce around in front of the tv. And his swallowing is deteriorating so much so that I see us utilizing his g-tube sooner rather than later. When he gives you eye contact, he looks straight into your soul. He is my gentle giant.