Meet the McNeil Family

Meet the McNeil Family

Friday, October 21, 2016

Go West, Young Man

We took a trip to the Pacific Northwest. We have been dreaming of taking this vacation for years and were finally able to make it happen. It was beautiful. The natural beauty found in that part of the country makes it easy to understand their population boom. Plus the food! We had some of the best donuts, coffee and micro brews we have ever had. Some of our highlights, aside from visiting family, were the Chihuly Museum in Seattle, seeing Mount Rainier, Multnomah Falls and the amazing Cannon Beach in Oregon. Memories were made. Bucket list item checked off.

Tuesday, October 18, 2016

11 Months

It's been 11 months today.

It is unimaginable to me that it has been so long since I heard her breathing. I have been feeling quite numb the past few weeks. We took a trip to the Pacific Northwest and it provided a beautiful escape. It was a chance to see loved ones and take in the beauty of that part of the country. Mountains draw me in and a day spent by the sea was cleansing.

As we arrived back in DC Saturday night I could feel the cloak of grief begin to pull over me. The weight was especially startling. It's always there, but being home make it so much more pronounced. The pressure of my grief grounds me. I find comfort in it.

We are entering into a difficult phase. We are reliving the days of one year ago and we are able to process them in a whole new light of distance and understanding. Birthdays are approaching and the one year anniversary is standing out in the distance waiting to envelop me.

I miss her. I miss everything about her. Her smell is fading from her toys and clothes. Her room has changed and reflects who used to be. I no longer look in my rearview mirror expecting to see her warm smile. Yet I cannot believe she is gone, never to return. The finality of it all doesn't seem real.

She has sent me a few signs though. Blackbirds have started to appear, especially when I am talking to her and thinking of her. They are her little message to her mommy.

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.

Monday, August 29, 2016

Waverly's Room

We have made some changes to Waverly's room. We were so fortunate to have a Sleep Safe bed for her. It made a world of difference in caring for her and allowing her to sleep safely each night. Plus it gave Matt and I the gift of a full night's sleep. It took some time, but we finally dismantled the bed (with help from my step-dad). A lovely family who also has two children with Sanfilippo Syndrome is came down and picked it up for their son. I am so thankful another family can benefit from this bed.

Wavey's room felt so empty and nondescript without her bed. I still wanted it to be *her* space. So I moved our desk in there. It's the perfect space to sit for paperwork or working from home. I bought a bright pink rug and moved her Yogibos there for comfy seating. I have found myself back there often. It's a new space, but it is still her space.

Sunday, August 21, 2016


Nine months into the grieving process and I have learned a few lessons along the way. An important one being that transitions are tough. Any change going on around me - seasonal change, end of school, preparing for a holiday - is a reminder that I have to navigate it without Waverly. 

I seem to be having an incredibly difficult time with Back to School. Photos started popping up on Facebook from friends in areas where school has already started. The stores are highlighting all of the back to school items. (Which to be honest has always been a difficult season for me. Instead of shopping for school supplies, our lists consisted of Lysol wipes and hand soap.) I had to order some pants for Oliver and when I went into Hanna Andersson to pick them up, I succumbed to tears over all of the adorable fall girl items. I loved dressing Waverly - she had style. Only one letter from school arrived this year. And as all of Wavey's classmates are anxiously anticipating the beginning of middle school, I am left mourning.

Thursday, July 28, 2016

A Bump on the Head

Oliver had an appointment at CNMC this morning and thanks to the Metro's Safe Track project, we now have to allot two full hours for the 25 mile trek. We were out the door by 7:30 and arrived on time for his Modified Swallow Study, only there was an error in scheduling and his appointment was for Monday. I almost lost it then and there, but I reminded myself that a kind word is going to be my best friend in this situation. I explained our story, showed the order with the appointment information and said that we were willing to wait if they could please fit us in.

An hour later we were back in radiology getting prepped. I popped Oliver up in the x-ray chair and he waited ever so patiently for his first bite of food for the day, no worries that it was covered in barium paste. As we waited for the team to assemble, Oliver started to get a little antsy. I bent over my bag to grab the iPad, stood up straight and banged my head on some piece of equipment. I saw stars. Embarrassed and in a considerable amount of pain, I tried to shake it off and hold in the expletives that were aching to escape.

And then they came. Tears. It hurt, but not enough to make me cry. I turned my head to try to pull myself together and they started flowing even more. And in an instant that bump on my head released a few weeks worth of emotions. Flashes of memories of Oliver's surgery, my worries, my memories of Waverly, the realization that this g-tube is not a step I wanted to have to take already, my fears that Oliver's time is slipping by too quickly - they all poured out. And I was completely unable to stop them.

I am fairly certain the SLP and radiology tech thought I suffered a traumatic brain injury or an emotional breakdown. I muttered something about wanting to just keep moving forward and we did. I fed Oliver spoonfuls of barium purees, cups of barium nectar and graham crackers coated in barium paste  And with each of his swallows, snot dripped from my nose and tears fell off my face. I was a mess.

I haven't had this happen before. A bit of physical pain causing an avalanche of emotional pain to rush forth. I have read about other bereaved parents having a similar outburst, but this was my first time. It is always cathartic to have a good cry and feel. However I try to do so in the privacy of my home or surrounded by a few close friends. Not in front of 5 strangers during a medical procedure.

Two Belly Buttons

Oliver had his g-tube placed on Friday morning, along with repairing his umbilical hernia. The same surgeon who did Waverly's was able to do Oliver's. She did a wonderful job and he was up and walking the following day. This time around the g-tube was no longer a scary and overwhelming ordeal. We have three years of experience with them under our belts. We were even able to teach the nurses a thing or two about them.

Oliver did great. He didn't complain or thrash around. He slept well and allowed all of the medical staff to check him out repeatedly. We were even able to see our Palliative Care doctor and geneticist. He was a super patient. We are so proud of him.

Tuesday, July 19, 2016

Eight Months

I don't have to set a reminder. My iCal doesn't send an alert. I anticipate the date weeks before it arrives and I find myself reeling from it for days after. 

The eighteenth.

It jumps from the screen. My eyes spot it immediately. Intrinsically I avoid scheduling appointments or activities on that day.

I don't curl into a ball or cry all day. I simply remember. I replay the morning of her passing. I feel her absence more deeply. I ponder time and how it can feel like she was here yesterday and yet also feel like she has been gone for years. I hope for signs. I hold Oliver closer. I always end the night in her room, twirling a ribbon of her hair.

Another month has passed and I can see the one year mark approaching. I am thankful for friends who have been down this road, who are able to advise and guide me. My dear friend, Helen, who lost two children to Sanfilippo, has been my guidepost. When I told her about our plans to be on vacation for the one year anniversary she wisely said that I should reconsider. Knowing my grief journey and the ways it has mirrored hers, she speaks from experience. Being home in my own space with all of my memories will most likely be a better option. A safer space to experience what I anticipate to be an incredibly difficult process. As I arrive closer to one year without Waverly, I am confident that there is no place I would rather be than in her room surrounded by a blanket of memories.

Monday, July 18, 2016

Mid-West Friends Tour

We returned from a 10 day road trip adventure to the mid-west. Thankfully Oliver is great in the car, because we drove a lot of miles. We have some special friends in Illinois, Indiana, Michigan and Ohio, so we packed up the van and off we went. Thanks to all of our friends who met us, hosted us and spent time with us!

Waverly was always more of a dare devil than Oliver, but I thought he would like the swings. I may have overestimated his enjoyment. But we survived and made a memory. 

Matt loves Rick Bayless, so we made a point to visit two of his restaurants in Chicago. 

 A little time spent on the Indian dunes on Lake Michigan.

 A definite highlight was spending the afternoon with these two amazing families. There is nothing like connecting with people to truly understand.

 Another highlight was spending a few days with my college best friends and their families. We got a picture of all of our kids, including Waverly's baa-baa.

We made a quick pit stop at our alma mater. 

I love sharing a king size hotel bed with Oliver. He is almost always horizontal and he likes to stick his feet underneath me. As uncomfortable as it sounds, I relish in it.

Wednesday, July 6, 2016

Happy Half Birthday, Oliver!

When your birthday falls between Christmas and New Year's Eve, you have to celebrate half birthdays. Oliver is 9.5 years old! He loved each and every bite of his ice cream cake.

Friday, July 1, 2016

Six Months On

My lovely friend, Laura, wrote this poem on the sixth month anniversary of Wavey's passing. She has an incredible ability to take my emotional chaos and put it into beautiful words.


"Six Months On"
for Shannon
By Laura Fabrycky

Ask yourself:
How long can you hold your breath?
How long under that dark wave,
down under its heavy
press, the sandy churn?
How long perdure?
How long withstand
the instinct to gasp,
watching for one break in the waves
to breathe that one life in,
any hopeful apparition,
as your lungs ache to burst with longing?
One never gets over the need for air.


The importance of friendship has been dominating my thoughts this week. 

Matt and I hosted a little picnic for friends Saturday. Five couples and their children filled our home for a few hours. All of them have had a significant impact on our family, especially within the past year. It was a beautiful opportunity to thank them and introduce some of them to one another.

On Sunday we went to a going away party for friends who are moving to Germany this month. We have known them for 10 years. Laura and I were pregnant when our husband's joined the Foreign Service. We immediately bonded and forged a friendship that has lasted through many years and many countries. Three years ago they moved back to Virginia and I was beyond thrilled. I have been without close friends in the area for quite some time. (The downside of living in transient DC and having so many friends on various tours throughout the world.)

Laura and I invested in one another's lives. Creating time each month to sit with one another and share over coffee. When Waverly went on hospice it was Laura who took control of meal delivery coordination, yard work sign ups, and fielding phone calls for me. She provided a shield of protection around our family - allowing space for us to simply be with Waverly.

A little over a week before Waverly died, one of my closest friends flew in for a long weekend to be with us. She cleaned, folded laundry, hung a sign on the door to keep away sales people, conveyed my concerns to a nurse when my emotions took over and I was unable to speak, sipped tea with me and forced me to take bites of food. Kamarah had the incredible gift of being present, but respected our space. She whisked around the house making beds and preparing dinner and then held me on the couch when I needed comfort.

When Kamarah left, I panicked. Her presence, especially at night when I feared Wavey's death, was profound. Knowing there was another person here with us was the most calming sensation. So much so that I called Laura the afternoon Kamarah left. I needed her presence. And she came with dinner in one hand and her pillow in another; leaving behind her baby boy for the first time. She stayed in our guest room praying for us and available within a moment's notice. The offer stood that she would be there for every night to come, for as long as I needed.

The act of these two women coming into our home, knowing that our daughter could die during their stay, is simply amazing. I am so thankful for friends who will enter the dark to be present. 

(I also have to acknowledge my dear friend, Michele, who lives out of the country. I know she would have been here in a second had I asked. Indeed she stayed with me for a few days after the funeral, knowing I would need her support. Very wise.)

Friday, June 24, 2016

The Waverly McNeil Memorial Award for Kindness & Inclusion

Yesterday was the sixth grade graduation and school assembly to celebrate the last day of the school year. Matt and I decided to create an award in Waverly's honor. We worked with the principal and came up with The Waverly McNeil Memorial Award for Kindness & Inclusion. Each year the teachers and staff will select a sixth grader to exemplifies kindness and inclusion of all students. This year, we had a hand in selecting the student with the overwhelming approval of the teachers.

We knew it was going to be an emotional day. Watching these amazing kids receive their certificate of completing elementary school and knowing I wouldn't be seeing them daily was heart wrenching. They continued to keep Wavey's spirit alive in that school. Each time I saw that was reminded of a memory or moment. I will miss their hugs and "Hi Mrs McNeil" each time I saw them.

Here is what Matt and I said in front of the school and specifically to Wavey's classmates:


Waverly started school with you in kindergarten. We remember speaking to some of you and answering your questions about her. Why didn’t she talk very well? Why did she chew on a red plastic T? As you entered second grade we came back in to talk about Waverly and Sanfilippo Syndrome. Reassuring you that it wasn’t contagious and we needed you to be her helpers. She would learn from you and you would learn from her. 

In third grade you became reading buddies and signed up to read her some of her favorite books, including a worn out copy of “Sammy the Seal”. In fourth grade she started using her walker and some of you volunteered to help push her walker to the playground for recess. In fifth grade you wore purple for MPS Awareness Day and made informative videos for Inclusion Week. In sixth grade, some of you asked to have lunch with Wavey.  Someone snapped a picture of that lunch date, and it has become one of our all time favorites. And then things changed.

Waverly was too sick for school, so you brought school to her. You made videos of yourselves reading books or stories and poetry you had written. You sang Happy Birthday to her dressed in all of the purple you could find.

Thank you for loving Waverly. For being her friend. For seeing her as a classmate. For facing any fears or apprehension you had. Waverly loved school and to her, school was all about the people. She lit up when she saw you.

In an effort to continue the legacy you have created, we are giving an award called The Waverly McNeil Memorial Award for Kindness & Inclusion. Each year teachers and staff will select a sixth grader who reminds them of your class, a student who was kind and included others while he or she was at Vienna. We wish we were able to present this award to all of you. This year it is our profound priviledge to present the award to one of Waverly’s favorite friends Leilani.


It was such a special moment. As I read the last 3 paragraphs I turned around to face the sixth graders. It was important to me to look them in the eyes. It was such an honor to present Leilani with this award. There truly were so many students who were deserving, but she was an easy pick. She was the first classmate to invite Waverly to a birthday party. She was a constant companion and friend. And in true Leilani fashion, she wrote about Waverly for her middle school writing sample last week.

I truly believe Waverly changed the tenor of her school. In her seven years at VES inclusion became a priority. If families wanted it, their children had access to their mainstream peers. The teachers came up with creative ways to benefit all students - reading buddies and PE peers. A father whose son spent a few years at another elementary school where inclusion was not promoted commented that "this would never happy at VES. Kids aren't segregated at VES." Amen!! So many parents came up to Matt and I after the ceremony to thank us for allowing their children to learn from Waverly. They see the benefit! Waverly made a lasting impression on their young lives. I truly believe they will carry that mission forth as they enter middle school and beyond.

Cape May 2016

We continued our tradition of spending a long weekend in Cape May to ring in the summer. I was apprehensive about returning to such a familiar place, knowing Wavey's absence would be pronounced. We actually asked some friends to join us to help fill the space and brighten our time. What a wonderful decision that was! Here are a few pictures of our time.

Wednesday, June 8, 2016

Her Toothbrush

I'm sitting on our front porch on a nearly perfect morning. The sun is shining, our wind chimes are providing a symphony, birds are visiting the feeder. I'm sipping some fantastic coffee I brought back from Costa Rica and Watson is sitting at my feet. I even did some weeding, which I despise. 

With all of the beauty surrounding me, I am feeling Wavery's absence. I wish she could be here feeling the wind on her face and the sun's rays on her skin. She loved being outside and watching the world.

I am starting to feel like I need to make some changes in our house, particularly in her room. I am feeling inspired to de-shrine her space. Matt and I spoke about it last night. We both have to be on the same page in order to move forward. We have some ideas and I hope to slowly start making progress.

I have kept Waverly's toothbrush next to Oliver's. I knew the time would come when I would be ready to toss it. I am almost there. But like most things, I am overly sentimental. I know I will cry and consider reaching into the trash can to retrieve it. And I may. Such is the process of grief. On my own terms and in my own way.

Tuesday, May 31, 2016

A Strand of Her Hair

Last night I retrieved a tank top from my drawer. I haven't worn it since last summer. As soon as I put it on, I found a strand of hair embedded in the fabric. I pulled it free and instantly realized it was one of Waverly's as it dropped from my fingers. I panicked and instantly turned on the flashlight feature on my phone to try to find it. I was on a mission. The entire time I knew this was insane behavior, but I simply couldn't discard this precious strand of hair. After a few minutes of searching, I found it on our duvet cover. And then the tears poured forth.

Wavey's hair was one of her distinguishing features. It was thick and course, textured and a kaleidoscope of colors on a single strand. I have some of her saved in little bundles tied with ribbon. But this one was different. She was alive when it fell out.

As I twisted it around my fingers with tears falling, Matt thought we should save it. He grabbed our copy of "Anne of Green Gables" - a family favorite. I tucked the hair on a random page only to be rediscovered on another day.