Meet the McNeil Family

Meet the McNeil Family

Thursday, September 22, 2016

Hoping For Signs

I have been struggling lately. I no longer feel Waverly's spirit around me. I like to imagine that she is off exploring or visiting other loved ones in her life. Maybe she, the ever devoted big sister, is staying near to Oliver at the moment as he experiences some difficult changes. But I miss her, both physically and spiritually.

I hope to feel her again. To hear her whisper in the songs of birds or the ringing of the wind chimes. To sense her presence holding my hand when I am too exhausted to take another step. I hope she will begin to visit me in my dreams, to send me little reminders that she is ever present.

Grief offers a unique perspective on the afterlife and what lies ahead. It can also provide immense comfort in the midst of unfathomable pain.

Monday, September 12, 2016

Making Changes

I recently read a beautiful essay about grief and how is changes oneself.  (You can read it here.) I keep rereading it and reflecting on it throughout my day. It has preoccupied my thoughts for a few weeks. Time won't heal all wounds and things won't return to normal, as the cliches want me to believe. Grief changed me.

I want to go back in time to experience Waverly again. I want to brush her hair into thick pigtails. I long to say "I love you" three times as I kiss her on both cheeks and forehead. I want to hold her hand and allow her thumb to pick at my fingers. I miss the weight of her wheelchair in my hands and the feel of her body leaning into mine for support.

Yet I want to take the new me back in time to her. The new me appreciates the subtleness of life. The rising of her chest with each breath and the little snores that would sometimes occur. The fragility of a moment. I want to go back and soak her in. I want to go back and put my phone down, climb into her bed for an extra cuddle, awake early to be there when she opened her eyes.

I have the unique and terrifying prospect of having to grieve the loss of a second child. Oliver will one day succumb to the horrid disease that is Sanfilippo Syndrome. How can I take what I have learned thus far into mothering him? What changes shall I make moving forward?

These are the questions I have been asking myself. 

Wednesday, September 7, 2016

It's Blossoming!

Waverly's beautiful tree starting blooming purple blossoms just as school started. What a lovely way to begin the beginning of a new year.

Monday, September 5, 2016

On This Day

One of the many reasons I blog is not because I think others are interested in what I have to say, but rather it serves as a record of all we have done and felt. I have written quite openly and honestly over the years. It is a reminder of my own personal growth. I also thoroughly enjoy going back and remembering. Revisiting the past has been painful throughout this journey, but never more so than now.

We have photos all over the house of Waverly & Oliver. Wavey's smile greets me as the background on my phone. When I look back at photos that aren't in my daily routine, the pain can be searing. Wavey's face is farther back on my Instagram and I have to scroll down so far on iPhoto to find her.

Facebook provides the incredible On This Day feature. With one click I can see everything I have posted on this day in my social media history. Photos, status updates, blog posts, all remind me of where we have been. Matt and I have actually had conversations about what the next few months will bring up for us emotionally. The smell of autumn, crispness in the air, certain clothes, back to school - all of these things bring memories of last year to the forefront of our thoughts.

A few days ago after clicking On This Day, the first item that popped up was this blog post. We had been seeing the changes in Waverly for months, but I remember clearly feeling like we were beginning to lose her then. Every bell and alarm in my mom gut was going off. I was trying not to panic or worry, but I could see it.

I am dreading these next months. The one year mark is standing before me like a huge monster ready to crush me. And I know each day I will be reminded of how I was feeling and what I was doing. I will be able to read between the lines and sense the anguish knowing I could not stop death. I could not stop Sanfilippo from stealing my beautiful daughter away from me. And I can not stop it from taking Oliver one day as well.

Thursday, September 1, 2016

Her Spirit

Today was Oliver's Open House at school. He is starting 4th grade next week and this will be his 7th year at VES (he attended preschool for 2 years). He has the same wonderful teacher and the same wonderful aides. The classroom is the same and even though he wasn't thrilled to be back - he is my homebody - he knew right where to go. He also has one of my favorite teachers as his grade level teacher. She is passionate about inclusion. And some of my favorite peers are with him. It should be a good year for him. He is surrounded by people who love him.

After visiting his ID and 4th grade classrooms, we headed to the side of the school to see Waverly's tree. We are there almost daily to water it through the hot summer. Today was different. Wavey's absence was more profound. She was supposed to be there with us. But her spirit can be felt both at her tree and within the school. She left her mark within those walls. I am proud of the legacy she left behind, paving the way for her little brother and other children in the Intellectual Disability program.