Meet the McNeil Family

Meet the McNeil Family

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.

Thursday, March 17, 2016

Mel-Moo's Poem

Our niece, Melanie, wrote this beautiful poem for school. She is 17 years old. Waverly always called her Mel-Moo and loved talking with her in the phone. She was her favorite cousin and hero.


“Memory”

By Melanie R

 

Sometimes I wish I had a time machine

I would open the door, step inside, and program

Not some major historical event,

But instead a memory.

 

I wish I could go back

To when I was little.

Specifically when we visited my Aunt, Uncle, and cousin in Ohio

We were all so much more carefree back then

All blissfully ignorant of the future

There are two things that really stick out from that trip

One, the Columbus Science Museum

The other, the scene from Titanic where the boat is slowly sinking in the dark

 

I wish I could go back

To when my cousin could follow me around and around

And around, 

And around, 

And around…

I can still hear her calling my name

Chasing me around my Grandmother's house

In circles like a merry-go-round that would never end,

But it did.

Life was so much clearer then.

 

I wish I could go back 

To the first time I saw Frozen.

the theater was crowded and my sister wanted to sit high up,

So I sat with her up towards the top while the rest of my family sat across the theater

The highlight of that movie for me

was when Anna freezes toward the end.

The room was dead silent, you could hear a pin drop

And all of a sudden I hear my cousin from across the entire room

Laughing her laugh that only she could create

And was so uniquely her.

I’d love to go back and revisit that moment

When it seemed as if the worst thing that could happen

Was that someone died in a Disney movie

 

I wish I could go back

To last summer

Before one of the scariest moments of my life

Before I could clearly see the effects of her genetic disease

Before I looked directly into my cousin’s eyes and she didn’t recognize me

Before she looked straight through me as if I was thin air

Before the longest minute where I waited 

For that smile of recognition to slowly spread across her face

Before I felt the relief that she knew who I was

Before I wondered if I had just imagined the entire moment

 

I wish I could go back.

Back to when I knew my cousin would burst into a fit of uncontrollable giggles

As soon as you mentioned her name because she was so happy

 

I wish I could go back

To before my cousin died

Because I miss her.

 

My memory is my time machine

With it I can travel anywhere I have already been

In memory I can always go back

and remember everything my cousin was able to do.

That is a miracle in itself.

 

How I remember my cousin is my choice.

Yes, I could remember everything 

She will never be able to do, 

But I choose to be thankful of everyday, every moment

That I had with her.

I choose to remember how amazing it was 

That she

Could laugh,

Could run,

Could sing,

Could speak,

Could live.

Still, that does little to dull this pain of loss,

For every memory is tinged with sadness,

Dusted by grief.

 

I once read that grief is the price of love,

And if so,

It is one I will gladly pay over and over again.

For without grief,

How can we ever know we truly loved anything of value?

 

Wednesday, March 16, 2016

Joy & Sadness

I posted some of our family vacation photos from our time in Florida last month. It was such a wonderful time away for the three of us. A break from routine and reality to relax. I like to look at the smiles - genuine smiles. I struggle with guilt when I can laugh and enjoy the moment. These pictures capture the joy we still have, the joy that Waverly still brings to our lives. I thought it was important to share all sides of our grief, not simply the sad.

Vacation Pics

shadows on the beach 

family selfie 

golf cart rides around the island 

Oliver enjoying the pool

our first boat ride 

Matt and Oliver enjoying the gulf

my shell collection 

golf cart family selfie 

Oliver at Magic Kingdom with Wavey's Minnie

riding the carousel

Oliver and I enjoying the Pooh ride

Wednesday, March 2, 2016

15 Weeks

It's been 15 weeks. I cannot believe I have entered the fourth month without Waverly.

We took a family trip last week to Florida. We were able to take our yearly road trip down south to sunshine and warmth in the midst of winter. Unlike past trips, we ventured to the gulf coast for a few days on the beach. A new destination to create new memories. We rode around in a golf cart, walked in the surf, collected seashells and enjoyed one another's company. We then went to Orlando for a day at Disney. Disney World holds so many memories for our family, we worried an entire week there would be too painful. It was always Wavey's favorite place. Still we enjoyed the day remembering. We have been there so often that each area holds a special reminder - her walking down Main Street in a Snow White dress, driving the cars at the Speedway, giggling maniacally on Big Thunder Railroad. I bought a balloon for her, because she always loved balloons. I cried as I disembarked Dumbo for the final ride of the night, remembering how much I loved riding that particular ride with her.

For a week I was able to distance myself from my grief. Our vacation was not just an opportunity to escape winter, but I was able to escape the full presence of grief. I was excited to return home. I love being in our house and I appreciate our space more than I ever did before. But I was aware that my grief was there waiting for me. And it found me. Like a warm down filled blanket, it has enveloped me. I missed it. It's weight grounds me. I am comfortable here.

Whenever I write of grief, I inevitably get a few messages from people about moving on or choosing to be happy with the now. I appreciate the sentiment and I believe most of it comes from a place of love. However I have found that people are uncomfortable with grief. Actual grief, which is not over in a finite amount of time. We like things to have a defined ending and there is no such thing. Waverly's death changed me. 

And I cannot help but remember that I will have to endure the loss of my son. Oliver is going to die. I cannot fully comprehend my grief, because I am anticipating his eventual death. I have been to hell and I know that I have to go back there again.

Friday, February 12, 2016

Sacrifice

I recently attended a gathering for women where the topic of sacrifice was discussed. I enjoyed being amongst women who could respect choices - decisions to stay home, work full time, go back to school, leave unhealthy relationships. We don't do this enough. We don't look past our own experiences to realize that others make different and valid choices.

I have often thought about the time since Waverly & Oliver were diagnosed. I chose to defer my plans - going back to school and embarking on a career. I *gave up* my dreams. I chose to be a full time stay at home mom. I thought it was my sacrifice.

After I left the woman's group, I sat on this thought of my sacrifice. Watching the arc of Waverly's life - being there from start to finish - I realized that I sacrificed nothing. I gained everything.

Wednesday, February 3, 2016

Ramblings

I love Anne of Green Gables. I remember reading the books and then watching the miniseries when I was a girl. In college, I would seek out fellow lovers of the series and we would binge watch Anne of Green Gables and Anne of Avonlea on a snowy Saturday.

One of the most romantic gestures thus far in my marriage was in 2001 when Matt and I were working for NCHS in Utah. For almost four years we traveled around the country moving from hotel to hotel every 9 weeks. We drove through 47 of the lower 48. (Why we didn't venture up to North Dakota to knock it off the list I will never know.) It felt like an adventure, but looking back it lacked community and ushered in a difficult time in our relationship. However in a Marriott hotel in downtown Provo, I came home from work to find Matt had rented a TV/VCR combo for the night and bought me the Anne of Green Gable: The Continuing Story VHS set. I was able to spend a few hours watching a (mediocre) story play out whilst eating a favorite meal. Total bliss.

In 2013 we were able to take a dream vacation to Prince Edward Island, the setting of Anne of Green Gables. I vividly remember driving across Confederation Bridge from New Brunswick. I hit play on my iPhone and we listened to the AofGG soundtrack as we entered PEI. We took the kids to Green Gables, toured the house and walked the Haunted Woods. We visited Lucy Maud Montgomery's grave and homestead. We walked the north shores and found sea glass.

When Waverly entered her final weeks and hospice was called, our family spent a lot of time in our living room. It has a lot of windows and bright sunny yellow accents. We put yellow tulips in vases and balloons by the sofa. Wavey was cuddled up on the couch with fuzzy socks and soft blankets. And to break up the quiet, we often played music. Whenever I had control of the Bose, I played the Anne of Green Gables soundtrack. It was instrumental and calm. It was reminiscent of my childhood, my dreams of a daughter and our dream vacation with my family.

The past week I have been incredibly grief-stricken. My bed has been my refuge. My motivation is low. I am clumsy and forgetful. In an effort to try to do something, I took a book about grief to our local Starbucks for a coffee and a change of scenery. I was surrounded by people having conversations, so I put in my ear buds and hit play. Instead of the podcast I had just been listening to or the playlist I sang along to in the morning, the Anne of Green Gables soundtrack began. Instantly the tears poured down my cheeks. All of the memories came flooding back and I was overcome with emotion. I miss my little girl.

I miss her giggle as I said "good morning, sunshine" each day. I miss the way a smile would spread across her face and her eyes would light up when she saw me. I miss her soft tummy as I accessed her feeding tube to administer her meds and food. I miss brushing her hair and the little cries she also made because she hated when we would do her hair. I miss the weight of her wheelchair and the way the wheels would catch as I pushed her up the ramp into our van. I miss watching her stare at Oliver as we would drive. I miss the princesses she would hold in her hands. I miss prepping her overnight feeds. I miss smoothing her hair as she sleeps and hearing the slight snores of happy dreams.

I hate using past tense when writing about Waverly.

It's been 11 weeks today.

Thursday, January 28, 2016

Ten Weeks

It's been ten weeks since Waverly died. A dear friend commented that she is reminded of the way a mother carefully counts a newborn's weeks and eventually moves into months. It feels strangely similar, yet horribly different. I despise moving into the double digits weeks since I last held her hand and smoothed her hair. Each moment I am moving farther away from her presence. I am unable to erase from my mind the horror of realizing she had taken her last breath. Each Wednesday morning at 7:30 I am transported back in time to the extreme agony I felt when I lost her.

I haven't been writing much, because I haven't been feeling much aside from missing Wavey. The permanence of her absence has yet to sick it and I keep thinking that I can change this. Something can be done to bring her back. I am unable to process anything more during this time.

Monday, January 18, 2016

Two Months


I have been waiting for the 18th to roll around for at least a week. Each Wednesday morning I awake knowing another week has passed. And as the 18th of January approached, I knew I was going to have to face Waverly's two month absence. 

I do not think two months has ever felt so long. I remember being pregnant and each month dragged on with the anticipation of a baby. And the month we waited for Oliver's diagnosis felt like an eternity. However, neither compare to two entire months without our beautiful little girl. Her absence is a finite stoppage of time. Our world shifted that day unlike ever before and there is no returning.

Grief is not linear. I will not 'get over' it. I choose to be honest with my emotions and vulnerable with my pain. I hope it allows my friends to better understand me and provide comfort to other people experiencing grief.

I have realized that people want to give advice and problem solve, as if my grief is something to be fixed. I try to remind myself that most people's intentions are honorable, however I have to admit to becoming frustrated and angry. The death of a child is isolating in so many ways. I am fighting the urge to retreat because my brokenness can be uncomfortable to those around me. Instead I seek out those who want to come along side of me and sit in my sadness.

Friday, January 15, 2016

Oliver

I have had quite a number of people ask for an Oliver update. Waverly's little brother is incredibly resilient. He had a difficult few months whilst Wavey was on hospice. Matt and I were preoccupied with her care, friends were driving him back and forth to school, nurses were in and out of the house. His anxiety level was high and he was difficult to please.

The night Wavey died, Matt and I snuggled him between us on the couch. No anxiety medication needed. He simply nestled in as we watched Mickey Mouse Clubhouse with him.

Since then he has been remarkably calm. Matt took time off of work, Oliver had breaks from school and we were able to settle into our new normal.

He is back to school and Waverly's amazing aide is now working with him. He is happy to be dropped off in the mornings and equally smiley when I pick him up in the afternoon. I think he is getting a lot of attention at school from students and staff. I know Wavey's friends have been especially kind to him and he loves the attention from the cool 6th graders.

He is strong. He has always been strong in gross motor skills and continues to walk independently and use the stairs with assistance. He had a choking episode a few months ago, so we are having to make some changes to his meals. The boy loves to eat and we indulge him when we are able. Oliver is a happy kid as long as he feels safe and has access to Mickey Mouse.

Going about our former routine without Wavey simply amplifies her absence.

We will forever be a family of four.

Tuesday, January 12, 2016

No Name For This

My dear friend, Laura, wrote this beautiful poem a few years ago. She has included it in her book, available for purchase here. I have been reflecting on it all morning long and thought I would share it.

No Name for This
by Laura Fabrycky
We give name to our particular griefs,
but there is one that we do not even name.
Each grief is a precious pain,
yet we leave one in shadow.
You see,
an orphan awakens to a parentless horizon.
A widow, sleepily reaches for her mate,
and finds an empty pillow.
A widower stares into
the pews at church and sees
pairs, like ducklings, and he is now
a lone drake.
But we have no name for this:
the mother from who death has
snatched her child;
an empty lap.
The father who leans at the doorway
watching the hospice care of his dying son;
parents who stare at headstones that bear
years short and early,
who wonder why they not only bear the joyous life,
but now must tend the memory flame-
we have
no name for this.

Friday, January 8, 2016

Ramblings

For long time blog readers, you may have noticed I reverted back to the old title of the blog. I also added the poem on the side bar titled "Welcome to Holland" by Emily Perl Kingsley. I changed the blog name about a year or two ago, but after Waverly's passing I want to return to the former in many ways. I know people complain about the poem as if it is the be all end of description of life in the world of special needs. I have always felt it offered a window into the start of the diagnosis. And as I begin a new phase of the journey it feels apropos to reacquaint myself with it.

Being the mother of a child who has died has taken me to a new place. I feel vulnerable and exposed in a way I have never felt before. I am confident people in the grocery store can see a huge sign over my head saying "daughter died recently - avoid". My emotions are so close to the surface that a box of Wavey's favorite snacks, the smell of her body wash, seeing her friends all elicit a swirling combination of tears, aches, smiles and memories.

I wish I could wear a black arm band like the olden days, warning people to speak gently and handle with care. Why did we leave that tradition behind? I suppose our reluctance to talk about death and grief has created the tendency to assume over a finite amount of time the mourner should be over it. I cannot envision a time I will ever be over it.

I had to notify someone that Waverly passed away this morning. He is a sweet old man who befriended us years ago at our local diner. He was captivated with Wavey and sat with us for quite awhile talking about his family. I always wondered what in his past drew him to her. Had he had a sister or daughter with special needs. Every few months he would mail her a gift - a Shirley Temple DVD or a gift card to a local toy store. He sent a gift over Christmas and this stranger's kindness was the definition of Waverly. She drew people in and touched them without ever saying a word. Her soulful eyes and crooked smile expressed love and acceptance. I sent Stanley a letter this morning thanking him for the gift, but letting him know that sweet Wavey passed away in November. I told him that we gave the gift to Oliver, her little brother who has the same syndrome. Wavey would have wanted to share with him. That is just the kind of kid she was.

Was. Is. Past and present tenses still confound me.

Saturday, December 26, 2015

A Year of Firsts

We have made it through our first Christmas without Waverly. We opted to spend the few days before the 25th in Cape May. It has been a favorite spot for our family and we have gone each June for the past few years. I thought the sea would be soothing to my aching heart, so we boarded the ferry and off we went. We took long walks on the beach and the promenade, the salty air unseasonably warm. We visited familiar favorites and missed her presence. We tried new spots and noticed everything she would have loved - the lights, fishtanks and colors. It felt strange to be a family of three when checking in at a restaurant. I wanted to wear a sign saying that our beautiful little girl should be there with us. That we ARE a family of FOUR and forever will be.

Christmas has been awkward for years. We typically can't make it through a Christmas Eve service without Oliver's anxiety amping up. The kids haven't been interested in presents for years. I used to try to force a normal Christmas routine - big breakfast, gifts under the tree, cookies for Santa, stockings stuffed with little treats. However I wisely realized that I needed to adjust my expectations and celebrate in the way that is best for the kids. Cartoons, pajamas, treats and Christmas lights. That is all they have ever needed to be happy.

Yesterday morning was difficult. I woke up missing Wavey. As Matt and I were sipping coffee and working on a puzzle, I received a text from a dear friend. Her son passed away in the middle of the night. He had Sanfilippo and was only 10 years old. Shocking. Utter disbelief. Suddenly my grief for Waverly was compounded at the loss of another precious soul to this horrible disease. And my friend and her husband were now joining us on *this* side. Grief. I am devastated for them, because I hate knowing people I love are feeling what we have been feeling for over five weeks.

Matt and I will be attending Miles' funeral in a few days. Our first funeral since...