Meet the McNeil Family

Meet the McNeil Family

Wednesday, November 30, 2016

One Year

Waverly's *anniversary* was November 18th. I cannot believe one full year has passed. Each moment of the first 365 days I was consumed with the thought of what I was doing one year before. Now when I look back a year ago each day I was without her. It is been a significant shift in my thinking. I no longer focus on what was and lately I been focusing on the loss. It may seem like a minute change in semantics, but for my grief process it has been monumental.

The lead up to the one year mark was horrendous. The actual day was a mess of emotion. I wasn't sure what to do with myself. I was anxious and unsure of how to fill my time, as if there was a correct way to honor the significance of that day. We took Oliver out of school and went to our favorite bakery. We took a walk in the woods, because Waverly loved being among the trees. And we went to one of her favorite restaurants for dinner.

Thursday, November 17, 2016

Her Last Full Day

Last night as I climbed into bed anticipating Friday, I was overcome with emotion. Today, November 17th, was Waverly's last full day on earth. She was present for the sun rise and set for the final time. It broke me.

She hadn't opened her eyes for days and we knew her final breath could come at any moment. However I was able to complete my motherly routine that day to the fullest. Administering medications, bathing her, dressing her, reading to her, singing to her. We stopped moving her around from room to room because her body was sore and with each repositioning we feared we were causing her pain. We spent the day in her room. Propped her up in her bed, with pillows to prevent additional bed sores. 

Bed sores were the worst part of the process. Inevitable, no matter how much you try. But I felt as if I had failed her. I couldn't stop her body from shutting down and revolting against my best efforts.

Waverly's geneticist stopped by on her way to the airport. She was grateful for one more visit with one of her favorite patients. And our amazing hospice nurse came by, signaling that the time was near but Wavey had proven to be a fighter and was going to follow her own path. It was our job to follow her lead. I wonder if she knew that day as she said goodbye and told us she would be back the following day that it was the end.

I remember Oliver was at Jill's House, so it was just Matt and I. We camped out in Waverly's room, unable to concentrate on reading or writing. We felt we had said all we could say to one another and to Waverly. We couldn't force any other profound moments. I remember turning on the iPad and watching an episode of Judge Judy. How stupid to have watched a ridiculous show in that moment, but we were exhausted in every possible way.

I remember as we laid her down in our bed that night, so I could sleep next to her and Matt slept on a mattress on the other side of her, I cried and said what I had been unable to say at any other point. It was time. Her body was failing her and it crushed me. We finally verbalized that she could go.

We never fully slept. I tended to stay up late into the night, unable to rest unable my eyes could no longer stay open. Matt was able to fall asleep, but would awake early waiting for the sun to rise again. We make a very good team. In the midst of tossing and turning, alarms would go off signaling us to administer medication.

And as soon as the darkness was chased away by the rising sun, she took her final breath. Choosing a moment when both Matt and I weren't staring at her. She had a momentary break and that is when she was called home. A morning when Oliver was being loved and cared for by the staff at Jill's House. He didn't have to listen to the screams from the depths of our souls that only a parent who loses a child can allow to escape.

In that instant our lives changed. Our identities changed. We were before and after.

Tuesday, November 15, 2016


Today is Waverly's 13th birthday. I have been anticipating it for such a long time and felt helpless the entire day. I just couldn't quite figure out what I was supposed to be doing. Wailing, celebrating, baking her favorite cake, volunteering my time. Nothing felt right and everything felt wrong.

My morning was routine since Oliver has standing OT and PT appointments. After I dropped him off at school, I popped into Target. I love giving gifts. I decided that in honor of Wavey Inspires, I would buy some of her favorite books and DVDs to donate to Jill's House. I put together a bag full of items and dropped them off this afternoon with Oliver. I hope the gifts bring them joy.

Matt and I went out to one of our favorite little restaurants. We sat in the corner by the fireplace and enjoyed some time together. We toasted Waverly 13th birthday and I shed a few tears. We ended the night early because we are both emotionally exhausted.

Last year on this day I remember praying that should would make it through. I stayed up until midnight to make sure she would see another day. We truly didn't know if she would. I remember our pastor coming over that afternoon to preform the Anointing of the Sick sacrament (similar to the last rites). I laid in bed next to her as Matt, my mom and step-dad stood around our priest. It was a beautiful moment.

Thanks to those of you who sent emails, texts, messages, for the flowers and the balloons and the cheesecake. For the photos of you wearing purple and for sharing the ways Wavey has touched your lives.

Today I tried to focus on celebration. Waverly loved birthdays and nothing make her smile more than hearing "Happy Birthday" being sung. I hope she was surrounded by those who love her and heard the happy birthday song sung twice (as she preferred). 

Happy Birthday, dear Waverly. Happy Birthday to you.

Wednesday, November 2, 2016

Blackbird Fly

This is my souvenir from our time in Portland. I have been wanting a tattoo that represents Waverly since she passed away. Blackbirds form a connection for us, yellow and purple are her colors. 

"Take these broken wings and learn to fly. You were only waiting for this moment to be free."


The calendar has turned and November has arrived. I have been anticipating this month for a year. Since Waverly passed away on November 18th, I remember wondering how I will survive without her.  Those first hours and days I was in constant counting mode - 4 hours since she died, 3 days, one week, a month. Wednesdays were painful and each 18th of the month crushed me.  And now I find myself days away from the one year mark. 

I have retreated the past few days. I read through my blog posts of her final weeks. Each morning I systematically check the On This Day section of facebook to see what I was feeling and what we were doing. It all happened so fast. My instincts were heightened for months that something was wrong. However reading my words I see that I couched my fears, hid them deep within the sentences.

 I miss her.