Meet the McNeil Family

Meet the McNeil Family

Wednesday, December 28, 2016


Christmas has always been difficult for me since the kids' were diagnosed. Initially I tried to push the sorrow away with sparkling lights and gifts. However as Waverly & Oliver's disease progressed, their interest in the holiday diminished. Oliver hasn't shown any interest in presents for years, he doesn't notice the Christmas lights and I don't think he spotted the Christmas tree. Our life gets quiet as those around get so busy with preparations. 

We attended Christmas Eve service and (thank to his iPad), Oliver sat through the entire service. We decided to go to Founding Farmers for dinner. It had been a tradition in the past to go there and then walk to see the National Christmas Tree. We had a lovely dinner and it felt comforting to be surrounding by tables of other families celebrating the holiday together. Christmas night we took Oliver to Meadowlark to walk through the gardens and see the lights. It was a wonderful way to close out the day and I think it will become a new family tradition.

Monday, December 19, 2016


“There is nothing that can replace the absence of someone dear to us, and one should not even attempt to do so. One must simply hold out and endure it. At first that sounds very hard, but at the same time it is also a great comfort. For to the extent the emptiness truly remains unfilled one remains connected to the other person through it.
It is wrong to say that God fills the emptiness. God in no way fills it but much more leaves it precisely unfilled and thus helps us preserve—even in pain—the authentic relationship. Furthermore, the more beautiful and full the remembrances, the more difficult the separation. But gratitude transforms the torment of memory into silent joy. One bears what was lovely in the past not as a thorn but as a precious gift deep within, a hidden treasure of which one can always be certain.”
― Dietrich Bonhoeffer

I shared the above quote on December 18th of 2015, exactly one month after Waverly passed away. My hope was in this sentiment. Days were dark and filled with pain, but I was also cognizant of the silent joy filling the crevices. As heartbroken as I was, it was an absolute honor to be Waverly's mom. She filled my life with love and happiness. Walking through her final weeks, as her body failed her, I found beauty. What a privilege it was to be by her side, holding her hand as she passed from this life into the next.

Last night at church on this 4th Sunday of Advent, our priest talked about JOY. And he said something near the end of his sermon that resonated deeply. In fact I had to find him afterwards to get the quote exactly right, because I was unable to jot it down fast enough. David said, "Joy is not the removal of everything that causes you pain. Joy is knowing that there is one who has resolved to be with you in it and superintend for your good."

This has been a theme. From watching "Inside Out" with Waverly in the theater a few years ago and her laughing when one of the characters sacrifices himself for a friend. (I on the other hand was ugly crying at this particular moment.) To Waverly's funeral when my friend, David spoke about the intermingling of sorrow and hope, grief and joy.

I am still processing, still learning new truths. I think by experiencing one of life's horrors, I am fully able to experience the true essence of joy.

Monday, December 5, 2016

Looking Back

It's another day of "one year ago today". December 5th loomed on the calendar. It will always be the day our family and friends gathered to celebrate and honor Waverly's short, yet full life. 

I threw myself into planning and wanted to be sure each detail was well thought out. We had some extra time since we opted to delay her funeral because of Thanksgiving. Our Anglican church tradition provided us with a beautiful service which we had acquainted ourselves with in the weeks before her death. We selected scriptures which spoke to our spirit. Our dear friend, Adam, was going to play classical guitar and he learned a long list of her favorite songs. Hearing the theme song to "Elmo's World" and "Baby of Mine" on classical guitar was absolutely amazing! I made a slide show of my favorite Wavey pictures and selected flowers to fill the space with color and beauty. Matt spent weeks refining his eulogy, determined to deliver it which he did. That moment is the proudest I have ever been of him. I wrote Wavey a letter, with the help of my talented friend, Laura, who put my jumbled thoughts together in a poetic way. And we had years before asked one of my oldest friends, David, to give the homily. His words were honest, acknowledging our grief and sadness, whilst providing hope.

The moment pictured above was the most special. Nathan, one of our pastors, was giving the commendation. He was with us to give Waverly her first communion only weeks before she passed away and there with us 3 days before she died to perform the Holy Unction (similar to last rites). Our pastors laid their hands on her urn and he prayed, "Receive her into the arms of your mercy, into the blessed rest of everlasting peace, and into the glorious company of the saints in light."

That moment in and of itself was powerful to me. Looking back after a year of wondering and worrying, fearing the unknown of heaven and hoping for truth, I find comfort in that small yet mighty prayer. My arms ache to hold her. I long for her to rest and be free of pain, to be released from the hold of Sanfilippo. And all I want for her is to be surrounded by love and light.

I haven't discussed my faith often on this blog. Mostly because I am still trying to figure it out. It has ebbed and flowed in my life. Wavey was the catalyst to get me back in a church community and she led us to a beautiful place of love and friendship. I think it was her way of looking out for Matt and I, to make sure we were taken care of and surrounded with support. 

A year ago today Matt and I greeted hundreds of people who came to Waverley's funeral. We were able to thank people who have supported us and hear ways in which Wavey had impacted their lives. We felt loved. And we were filled with pride for our little girl and all she accomplished in 12 years. It was a lovely day.

Thanks to Ellen for taking this picture along with many others. They are treasured.