Meet the McNeil Family

Meet the McNeil Family

Thursday, January 28, 2016

Ten Weeks

It's been ten weeks since Waverly died. A dear friend commented that she is reminded of the way a mother carefully counts a newborn's weeks and eventually moves into months. It feels strangely similar, yet horribly different. I despise moving into the double digits weeks since I last held her hand and smoothed her hair. Each moment I am moving farther away from her presence. I am unable to erase from my mind the horror of realizing she had taken her last breath. Each Wednesday morning at 7:30 I am transported back in time to the extreme agony I felt when I lost her.

I haven't been writing much, because I haven't been feeling much aside from missing Wavey. The permanence of her absence has yet to sick it and I keep thinking that I can change this. Something can be done to bring her back. I am unable to process anything more during this time.

Monday, January 18, 2016

Two Months

I have been waiting for the 18th to roll around for at least a week. Each Wednesday morning I awake knowing another week has passed. And as the 18th of January approached, I knew I was going to have to face Waverly's two month absence. 

I do not think two months has ever felt so long. I remember being pregnant and each month dragged on with the anticipation of a baby. And the month we waited for Oliver's diagnosis felt like an eternity. However, neither compare to two entire months without our beautiful little girl. Her absence is a finite stoppage of time. Our world shifted that day unlike ever before and there is no returning.

Grief is not linear. I will not 'get over' it. I choose to be honest with my emotions and vulnerable with my pain. I hope it allows my friends to better understand me and provide comfort to other people experiencing grief.

I have realized that people want to give advice and problem solve, as if my grief is something to be fixed. I try to remind myself that most people's intentions are honorable, however I have to admit to becoming frustrated and angry. The death of a child is isolating in so many ways. I am fighting the urge to retreat because my brokenness can be uncomfortable to those around me. Instead I seek out those who want to come along side of me and sit in my sadness.

Friday, January 15, 2016


I have had quite a number of people ask for an Oliver update. Waverly's little brother is incredibly resilient. He had a difficult few months whilst Wavey was on hospice. Matt and I were preoccupied with her care, friends were driving him back and forth to school, nurses were in and out of the house. His anxiety level was high and he was difficult to please.

The night Wavey died, Matt and I snuggled him between us on the couch. No anxiety medication needed. He simply nestled in as we watched Mickey Mouse Clubhouse with him.

Since then he has been remarkably calm. Matt took time off of work, Oliver had breaks from school and we were able to settle into our new normal.

He is back to school and Waverly's amazing aide is now working with him. He is happy to be dropped off in the mornings and equally smiley when I pick him up in the afternoon. I think he is getting a lot of attention at school from students and staff. I know Wavey's friends have been especially kind to him and he loves the attention from the cool 6th graders.

He is strong. He has always been strong in gross motor skills and continues to walk independently and use the stairs with assistance. He had a choking episode a few months ago, so we are having to make some changes to his meals. The boy loves to eat and we indulge him when we are able. Oliver is a happy kid as long as he feels safe and has access to Mickey Mouse.

Going about our former routine without Wavey simply amplifies her absence.

We will forever be a family of four.

Tuesday, January 12, 2016

No Name For This

My dear friend, Laura, wrote this beautiful poem a few years ago. She has included it in her book, available for purchase here. I have been reflecting on it all morning long and thought I would share it.

No Name for This
by Laura Fabrycky
We give name to our particular griefs,
but there is one that we do not even name.
Each grief is a precious pain,
yet we leave one in shadow.
You see,
an orphan awakens to a parentless horizon.
A widow, sleepily reaches for her mate,
and finds an empty pillow.
A widower stares into
the pews at church and sees
pairs, like ducklings, and he is now
a lone drake.
But we have no name for this:
the mother from who death has
snatched her child;
an empty lap.
The father who leans at the doorway
watching the hospice care of his dying son;
parents who stare at headstones that bear
years short and early,
who wonder why they not only bear the joyous life,
but now must tend the memory flame-
we have
no name for this.

Friday, January 8, 2016


For long time blog readers, you may have noticed I reverted back to the old title of the blog. I also added the poem on the side bar titled "Welcome to Holland" by Emily Perl Kingsley. I changed the blog name about a year or two ago, but after Waverly's passing I want to return to the former in many ways. I know people complain about the poem as if it is the be all end of description of life in the world of special needs. I have always felt it offered a window into the start of the diagnosis. And as I begin a new phase of the journey it feels apropos to reacquaint myself with it.

Being the mother of a child who has died has taken me to a new place. I feel vulnerable and exposed in a way I have never felt before. I am confident people in the grocery store can see a huge sign over my head saying "daughter died recently - avoid". My emotions are so close to the surface that a box of Wavey's favorite snacks, the smell of her body wash, seeing her friends all elicit a swirling combination of tears, aches, smiles and memories.

I wish I could wear a black arm band like the olden days, warning people to speak gently and handle with care. Why did we leave that tradition behind? I suppose our reluctance to talk about death and grief has created the tendency to assume over a finite amount of time the mourner should be over it. I cannot envision a time I will ever be over it.

I had to notify someone that Waverly passed away this morning. He is a sweet old man who befriended us years ago at our local diner. He was captivated with Wavey and sat with us for quite awhile talking about his family. I always wondered what in his past drew him to her. Had he had a sister or daughter with special needs. Every few months he would mail her a gift - a Shirley Temple DVD or a gift card to a local toy store. He sent a gift over Christmas and this stranger's kindness was the definition of Waverly. She drew people in and touched them without ever saying a word. Her soulful eyes and crooked smile expressed love and acceptance. I sent Stanley a letter this morning thanking him for the gift, but letting him know that sweet Wavey passed away in November. I told him that we gave the gift to Oliver, her little brother who has the same syndrome. Wavey would have wanted to share with him. That is just the kind of kid she was.

Was. Is. Past and present tenses still confound me.