Meet the McNeil Family

Meet the McNeil Family

Sunday, August 21, 2016

Transitions

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.

Friendship

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.

Friday, May 20, 2016

Button Belly


This sweet little boy is getting a g-tube. We knew the time would come and after an aspiration event on Saturday that resulted in a pneumonia, I called the surgeon. The same doctor who placed Waverly's will do Oliver's and repair a small umbilical hernia he has had for years. Because of the pneumonia, we have to wait at least 6 weeks for the surgery. And given that we have a vacation scheduled, we put it off for about 8 weeks.

Liquids have been the major source of his problems. Our plan it to use the g-tube for hydration and medication initially. As the disease progresses, we will then be set for nutrition as well.

We have been down this road before, so we know how beneficial the button was for Waverly. We know this is the best decision for Oliver. It certainly reminds us that our little boy's body continues to be ravaged by Sanfilippo Syndrome.

All who have met Oliver instantly love his big round belly. And it has been rubbed many times by many people. I hate that his smooth tummy will be marred by the g-tube. I came to love Wavey's button belly and I know I will fall in love with Ollie's as well.


Wednesday, May 18, 2016

Six Months

It has been six months since I last heard Waverly take a breath. Six months since I twirled her hair in my fingers and kissed her warm cheeks. I cannot believe so much time has passed since she was here with us.

There have been moments where I am confident she sent little signs - birds and wind chimes specifically. I am still waiting for her to come to me in a dream. And my heart has yet to feel confident that she is safe and loved wherever she is.

I haven't written much over the last month because I feel no inspiration. My mind is slowly coming to terms with the fact that she really is gone. The surface emotions are settling and instead I am left with this deep pain that has yet to be defined or understood. It has moved beyond simply missing her presence and moved to a new stage and a new depth of loss.

We were able to plant a Catawba Crepe Myrtle tree at the kids' school. It will blossom purple each summer. The tree will provide a place for those who love Waverly to visit and remember. 



Sunday, May 1, 2016

Sweet Oliver


This little boy has had a difficult week. Since returning from our vacation he started having some seizure activity again. We had ventured up to CHoP a few weeks ago to see a wonderful team of doctors, including the neurologist who diagnosed the kids. She recommended that we begin treating the seizures. After some thought we decided that this was a good course of action.

I have been dealing with quite a bit of guilt/regret since Waverly passed. I never felt like we adequately addressed her seizures and neurological issues. We opted to not medicate immediately and at times I second guess that approach. So with Oliver, we have decided to try being proactive with the seizures in the hopes of stopping some of the damage they can inflict on the brain.

Therefore a few days ago we started Ollie on a new med. We haven't seen any negative side effects. It is going to be a few months until he is up to an effective dose, so we will have to wait and see how it works. Fingers crossed and prayers sent.

Sweet Oliver continues to have petit mal seizures and some laughing ones as well. They seem to be disrupting his sleep. He is also very unsteady on his feet. I certainly hope the new medication works and is able to restore some balance, both literally and figuratively.

Tuesday, April 26, 2016

Costa Rica!

Oliver and I took a last minute trip to Costa Rica last week. We were able to stay with some dear friends and we spent a day with our favorite New Zealand friends. I loved having this adventure with him. More memories and more travel ahead!

Oliver on the plane. Thankful for the iPad and lots of snacks. 

Chilling in the San Jose sunshine 

We took a tour of La Paz Waterfall Garden and saw some amazing animals.

And Costa Rican waterfalls!

Oliver in the butterfly rooms. Check out the gorgeous blue butterfly!

Posing in front of the waterfalls.

Breakfast on the patio 

Oliver with his buddies Judah and Chloe

Monday, April 25, 2016

Restraint

Last week I was asked to speak at our church to a group of women. I decided to share what I wrote. It provides a good introduction to those new to the blog and our story.

****************************

Restraint

My name is Shannon McNeil. Our family has attended Restoration for a year. We typically sat in the last row of the church during the 11:00 service to accommodate my daughter’s wheelchair. Five months ago we moved forward a few rows.

In 2006 we were a budding family with the entire world open to us. A sweet spirited 3 year old girl and a bouncing baby boy. My husband had recently joined the Foreign Service and we were off to Chennai India for our first tour. Our first roadblock came when our son, Oliver, failed his newborn hearing test. A month later at 6 weeks of age he was outfitted with hearing aids. And thanks to his audiologist’s expert ear, our daughter, Waverly, was also diagnosed with a hearing loss. Another pair of hearing aids was purchased. And I grieved. Two children with hearing impairments and I felt ill equipped to deal with it. Our world became smaller and scarier.

Days later our assignment to Chennai was pulled and the kids were declared medically ineligible to travel to many parts of the world. Our dream of being world wide available and ready to explore as a family was denied.

We were offered London. They had good speech therapy services and audiological care that our kids needed. I was even able to find a preschool for hearing impaired children for Waverly. A little glimmer of light that the entire world wasn’t closed off, just parts. We could still dream, explore and flourish.

Within a few months, we were advised by Waverly’s teachers and therapists to consult a pediatric neurologist. They saw more than simply a hearing impairment. Months of MRIs, blood work-ups, genetics consults and a flight back to the US culminated in a horrible diagnosis. Waverly had a rare neurodegenerative disease called Mucopolysaccharidosis type 3 or Sanfilippo Syndrome. 

To get a bit medical on you:

***Sanfilippo Syndrome is characterized by a missing enzyme. This particular enzyme breaks down a specific sugar molecule. Since it is not broken down, it builds up throughout the body and especially in the brain. Kids typically develop normally for the first few years and then begin to plateau, before losing all skills. Eventually they lose the ability to talk, walk and swallow.*** 

The neurologists told us there was no cure, no treatment, some clinical trials were being talked about. They advised us to enjoy the time we were given and make memories. I felt our world grow ever smaller with the words “rare fatal disorder.”

They then mentioned having Oliver tested.

One month later on the streets of London I received a phone call that Oliver also had Sanfilippo. Our world grew darker and smaller once again. Overwhelmed with the future we curtailed from the UK and made a home in northern Virginia. The kids were declared medically ineligible to travel overseas at all with the State Department.

Sanfilippo took more of our freedom, our dreams and would eventually take our children.

We hunkered down in our little Vienna apartment. Matt worked. I gave up any hope of a career or fulfilling my dream of returning to school for an advanced degree. Waverly and Oliver’s care took all of my time. Managing insurance calls, therapy sessions, doctor appointments, school runs, IEP meetings. Waverly was growing more and more different from her peers. Play dates were no longer possible, church child care couldn’t handle her, going out grew difficult. 

I became very angry. Angry at people who would stare or avoid making eye contact with us. Angry that our dreams were no longer possible and that Sanfilippo was going to restrain our life.

I also became very jealous. Jealous of all the families who dodged this genetic mutation bullet.

I fought against the restraints for many years, closing myself off in a desperate act of protecting the kids and myself. I only saw limitations and dead ends.

And then I slowly began to embrace our circumstances. Waverly & Oliver have so much to offer the world around them. They ooze grace and kindness. They deserve all that we are able to provide within the constraints of accessibility, safety, and what brings them joy. We may have limits, but we can still thrive within them.

In the 8 years since the kids’ were diagnosed, I have been asked to give up things. Career, education, choice of where to live, the option of having more children. Yet I no longer see those things as a sacrifice. I have been given the gift of mothering two amazing children who have changed me to my core, who have had more of an impact on this world than most.

This is not to say that I no longer wish life were different. I would give my life to stop Waverly & Oliver’s suffering. I still scream at God and at times it’s my only way of communicating because rage is my sole emotion. Jealousy creeps in almost daily.

In II Corinthians 1:3-4 Paul wrote, 3 “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”

By being limited I was actually opened up to so much more.

Grace. Love. Acceptance. Kindness. Joy. Humility. Patience. And also Sorrow. Grief. Pain. Loss.          

Five months ago I laid next to Waverly as she took her final breath. All of those years of anticipating grief could not prepare me for her death. 


I was able to be there from the beginning to the end of Waverly’s beautiful life. And I will have the honor of doing the same for Oliver. 

Monday, April 18, 2016

Five Months

It has been five months. A moment and a lifetime twisted into one. Her smell is fading from her clothes and pillows, instead scented by my tears and perfume. Her BaaBaa is mangled by my tight grip on him throughout the night. I miss her most at night when I pass her bedroom door.

She is reminding me that she is still with me. There will be moments when I cry out to her and her wind chimes sing. I feel her spirit, but oh how I long to feel her hand in mine.

Thursday, April 7, 2016

#sayhername

I started using Waverly's name whenever I get a coffee from Starbucks or put my name in for a table at a restaurant. I love hearing her name said aloud. Some friends have read my blog posts and listened to my pleas to continue to say Waverly's name. They have been filling my Facebook feed and phone with photos of Wavey's name. It is a small, but incredibly meaningful tribute to my darling girl. Thank you for sharing and reminding me that she is loved. 

Tuesday, March 22, 2016

Thoughts on Grief

The counting of weeks has morphed into the counting of months - 4 to be exact on March 18th.

The anticipation of each 18th day is agonizing and often worse than the actual date itself.

I have broken more glasses and plates since Waverly passed away compared to my entire lifetime.

I cannot recall names of those outside of my immediate circle.

Words escape me and my grammar has been especially horrid.

Night time is by far the most difficult part of each day.

I say good morning and good night to Waverly daily.

Magical Thinking is a very real concept. (I need to reread Joan Didion's book.)

I am going to become a crazy bird lady. I bought a feeder for in front of my kitchen window and I love it. The birds bring me such joy. I am now on the hunt to fill our entire yard with bird feeders.

Hearing someone say Waverly's name is music to my soul. Please continue to #sayhername

I have never been so tired.

I don't like to cry in front of people. I always cry in the church pew though.

I often say I am OK. It's not true. I am broken and struggling.

I am woefully behind in thanking everyone for the gifts and flowers they have sent. Please grant me grace as I slowly try to check things off of my to do list.

I love keeping fresh yellow tulips in Wavey's room.

Being in nature brings comfort.

Grief is not linear. There is no moving on or getting past. It is messy.

A smile is a easy way to show compassion. Eye contact avoidance does not.

I have depression and anxiety.

I cannot imagine how I will cope with losing Oliver. He is my snuggle buddy and provides me with so much comfort.

I miss every aspect of caring for Waverly. I do not "enjoy the free time" or "like the break".

I have watched way too much bad tv, but it provides a mindless escape.

I recommend reading "Rare Bird" to anyone who wants to understand how I am feeling in a deeper way. Anna nails it. And I am unable to put words to my feelings at this time.

Looking at old photos and sharing them is cathartic.

I replay the moments surrounded her death over and over again in my mind. It is awful.