Meet the McNeil Family

Meet the McNeil Family

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...


Friday, December 18, 2015

The 18th

It has officially been one month. I know that at least for the next year the 18th of every month will be painful. A reminder on the calendar that another finite amount of time has passed and we are left here without our little girl.

My head and my heart are finally communicating about Waverly's death. And reality is beginning to set in. Last night I glimpsed an old photo of her and in an instant I was weeping. Wails from deep within myself that I last felt the day Wavey passed away. It was as if I was reliving the moment once again, yet feeling it more deeply than before.

In the last month:
I still have her red toothbrush in the holder. I simply haven't been able to throw it away.

Her room is much as it was, although some of her clothes have been gifted to dear friends.

Her little shoes have all been moved from the entryway and sit lined up on her closet shelf.

Her backpack is untouched and hanging on her door.

I've moved all of her hair ties into her bathroom drawer. It was too painful to see them constantly.

I miss her in a profound way. I am unable to find the words to articulate the depth of my sorrow. And then the strange ability to see Oliver and be overwhelmed with joy at this beautiful little boy bouncing around the family room because of a favorite Mickey Mouse Clubhouse episode.

Grief is confusing. It is bewildering and disorienting. It is physically painful and exhausting. 

********

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

Wednesday, December 16, 2015

4 Weeks

It has been 4 weeks. Four weeks since my beautiful little girl drew her last breath. I think I am just now beginning to feel the weight of her death. My brain knows she is gone, but my heart is having a much more difficult time realizing it. All normal and natural responses to loss, but when it's your first time going through the process it can be confusing.

Matt and I attending a bereavement counseling session with Waverly's hospice agency. It was quite helpful at normalizing what we have been feeling. The counselor provided us with some literature and book recommendations that may he helpful as we navigate the grief process. We learned that grief is not linear nor predictable. Each person experiences loss differently and time will never heal, it just may soften the blow.

I haven't written at all since Waverly died because I know I am still too fragile to put to paper all the emotions swirling inside of me. I have made some notes and reminders, but I am unable to do much more. What used to be cathartic now feels agonizing.

I have learned a few things thus far on this journey. I love hearing Waverly's name. It is important for me to see and hear her name. It doesn't cause me pain, but rather brings a bit of light into the darkness. I have also found a tremendous amount of joy and comfort from hearing how Waverly has inspired *you*. It reminds me that her sweet spirit continues to be alive on this earth, bringing beauty and acceptance to those who need it the most.

Please reach out. If you mentioned wanting to get together or bring a meal, please take the initiative and contact us. It helps to have some ideas in mind to take the pressure off of me and just allow me to be with you. Follow my lead. I may want to talk and cry or I may simply want to hear all that is going on in your life. Ask how I am doing. Say Waverly's name. And know that I will offer grace. I don't know how best to journey this new road, but I need friends who will be by my side along the way.

Thank you to all who have offered support to our family. I am just now beginning the process of sending thank you cards out. Forgive my tardiness and know we are grateful for everything.

Sunday, December 13, 2015

David Landt's Homily

Homily for Waverly Mae McNeil
 December 5th , 2015

I’ll begin by sharing a story to usher in my thanks for your presence here today. Then I will move
into some Homilyish thoughts (which I totally think should be a word) and I will close with a
poem and a prayer. Story, Thanks, Thoughts, Poem, Prayer. I want you to know where we are
going in this part of the service in the hope that you can relax and allow yourself to be carried by
the space created by these words.
-----
There is a pastor I know back in Minneapolis who decided to take up running three years ago. I
followed his journey into running because he is that friend you have on facebook who always
posts their workout for the day.
In year one he trained and ran his first marathon. In year two he trained for and ran a 50 mile race.
But just a couple weeks ago he set out and finished a 100 mile race. 100 miles. He ran for 27
hours, 20 minutes and 25 seconds. Over 27 straight hours running.
This is incredible personal feat of endurance, but what stood out to me is that these kinds of races
are impossible to do alone. You need a team. You have a team there doing the race alongside of
you. Monitoring your hydration and nutrition, directing your pace, navigating the places to stop
and rest; and championing and empowering when its time to get back up and keep going, people
cheering and holding signs of encouragement along the way. All different kinds of loyal
supporting friends to make something like that happen. It takes a team.
If you are here today, you know in your bones the now near decade long monster marathon the
McNeils have faced and continue to participate in. We have been witness to a family that has
faithfully and unfathomably been able day in and day out to push the human boundaries of soul
and spirit and body and mind. They have faced terrain both terrible and daunting with enduring
grace and unstoppable resolve.
You also know how quick Matt and Shannon are to say…we could not have faced this alone. It
took a team. So on behalf of Shannon, Matt and Oliver thank you so much for being on the team.
You are the doctors, and the teachers, the classmates, you are family, and friends both new and
old. And some of you are fellow runners in Sanfilippo community sharing a bond you and you
alone fully comprehend. You are Restoration Church which I’m so grateful became family so
quickly. You are those who have been present in the most agonizing hours and those there to give
respite on the days where continuing on seemed unimaginable. You are the friends who
understood and shared in the joy, laughter, and thanksgiving of their amazingly rich family.
Thank you for being their team.
On their behalf thank you for your presence here today to ache as well as honor, to shed tears and
share your memories that celebrate the beautiful life of Waverly Mae so richly.
Each of you has an endearing perspective of how this brave family and Waverly in particular has
given you, inspired and shaped your life. Thank you for being here.
-----
Matt and Shannon, we honor how you have shown us the seemingly infinite capacity of the
human heart to stretch in love. You have been a model to us of a rarely traveled road. A road
you never asked for, but one you have embraced and navigated with grace, perseverance,
tenderness, and determination. We are all so deeply honored by your friendship and by the way
you have chosen to live your lives. You are lights in a dark room. Your lives have created this
reverent space where gratitude and grief are welcome to exist and even encouraged to dance
together.
We are all richer and deeper human beings because of the path you have pioneered. You have
opened your hearts wide to us and it is a treasure beyond measure. On behalf of the community
gathered here today, we say thank you.
And to my dear Waverly,
I’ve learned more from you than seems fair. Your pure life and joyous presence opened me and
my soul to a truer way of being in the world. You taught me to be present and comfortable in my
own skin in a way few ever attain. This was effortless for you and I have to admit that I am a
little jealous. I hope to some day be as good at it as you were. You are gifted in spirit in a way
that mine is chronically distracted. But you helped me realize that it is ok to receive help. I am so
grateful for the way you have been a shepherd for my soul.
Waverly, this community here today is here because of you. You have shaped us. We love you
and miss you.
--------
Shannon and I both grew up in Macungie Pennsylvania. Which translates into English as Bear
Swamp…for anyone here who has real-estate ambitions. It’s rare to have a life long friend. We
experienced church together, we sang together, carpooled, went to high school together where in
the play Bye Bye Birdie we were cast as Mr. and Mrs. Mcafee, we went to the same college in
Indiana, where Shannon you met Matt, whose friendship to me is this really cool bonus. And
Shannon and Matt you conspired and set the stage for Sarah and I to fall in love and get married.
Thank you for that.
I remember getting our young kids together for the first time at the McDonalds play land in
Trexlertown, we were both in town for either Thanksgiving or Christmas, I don’t remember
which. I believe Waverly was 2 and Sam and Ellie were 3 and 4. We had the usual new parents
banter of “remember when we used to hang out in cooler places and have conversations that
included complete sentences.”
You had what felt like this exotic entry into the world of the US Foreign service and got stationed
in London so you could care for Waverly’s ears. It’s this memory seared in my mind because it
was a moment before either of us had ever heard of something called Sanfilippo. It didn’t exist.
Nor could we have in our wildest imaginations conceived of the narrative arch from that day to
this one.
-----
There is this line in chapter 24 of Luke’s Gospel. It comes from the mouth of two battered
disciples returning to their home in Emmaus, 7 miles from Jerusalem. They meet and are
explaining to a stranger that Jesus had been brutally murdered three days before and to top it off
they heard rumor that some of their friends encountered angels who were announcing his
resurrection. This whole turn of events was both devastating and disorienting And they say to the
stranger “But we had hoped that he was the one who was going to redeem Israel.”
“But we had hoped”….This was not at all how the story was supposed to go.
Each of the four gospel accounts tell the death and resurrection story of Jesus as having this
similar disorienting affect on its first followers. John has Peter returning to the old family fishing
business, Luke has Cleopas and Mary returning to Emmaus. Mathew simply states all the way to
Christ’s ascension that “some believed and some doubted.”
The account that I couldn’t get out of mind since the day Wavey entered Hospice was from the
Gospel of Mark. The earliest manuscripts of Mark actually have it end at verse 8 of Chapter 16.
The women go to the tomb and hear an angel announce resurrection and then it ends with this…
“Trembling and bewildered, the women went out and fled from the tomb. They said nothing to
anyone, because they were afraid.”
That’s how Mark ends it. Now there is a later 2nd ending that finished the account similar to an
outtake of an extended cut dvd. That’s not to say verses 9-20 of chapter 16 aren’t as good.
Perhaps Mark was hounded by his nieces and nephews at the next family meal… “Uncle Mark
don’t leave us hanging…what happened next?” and he would continue with the rest of the story
and maybe for the 13 year old boys in the room he threw in the bit about playing with snakes.
But most likely the first congregation hearing Marks gospel was in Rome and their first hearing
would have had it end abruptly with the women trembling, bewildered and afraid to say anything.
I have come to really admire this original ending. I think it was a bold move on Mark’s part. I
like it in the same way I love a song whose artist chose not to resolve the last chord of the
score…but intentionally leaves the listener with the tension of something yet to be resolved.
Sometimes a story can become too familiar that it had loses the original tension. And it takes an
artist to write in a way that keeps the hearer engaged in the story, because ultimately it is a story
for us to know how to live out, not a story simply to know how to tell.
On the first easter day Mark leaves us their at the scene to join a real experience of death and
profound loss. Not just the loss of a friend, but the loss of a worldview. A loss of hope. A loss
of faith from its first witnesses. As Luke put it…“But we had hoped”.
A few observations:
First, It is ok and necessary to grieve “the we had hoped parts of our own lives”. You need
permission to Name them… “we had hoped” and admit that “it didn’t happen the way we had
hope”. Admitting and naming are necessary pre-requisite to accepting and the grieving.
Second, It is ok if your current concept of God and faith doesn’t work anymore. The gospels
present the expectation that we probably are holding unto views of God and life that need to
experience a kind of death, before new mature forms of faith can be reborn. Yes, this is can be a
terrifying prospect, but it is also necessary and perfectly normal.
Third, It is good for me to remember that the good news announced by the angels was
disorienting not pain relieving. Their words did not provide a bypass around suffering. I believe
the hope of resurrection is powerful, but it isn’t a short cut to a happy ending.
If an angel sitting on the side of an empty tomb announcing resurrection is still not able to prevent
the terrifying experiences of loss in the disciples…then we probably should not expect that our
words will somehow help us avoid the face of our own grief. We can give each other grace in
what words are and are not able to do.
But I do know from experience that here is nothing more insufferable than a religious person
trying to administer the gospel like a pain reliever. Handing out trite phrases of hope like
children’s strength Tylenol to someone with severed limbs. I only know this because I am guilty
of this malpractice. Hello my name is David, I am a recovering religious distributor of the gospel
as pain avoidance. This was my concept of faith that needed to experience a death, before I had
any hope of rebirth. Faith as an assertion of illusory control on the universe with special access to
divine altering interventions to its unpleasantries. Yes, that had to die for me.
-----
The stranger on the road to Emmaus recast the story in a different light to the devastated disciples:
A story of entering suffering rather than the ability to manipulate or avoid it. And it was in the
context of a shared meal of broken bread and wine the eyes of the disciples were opened to the
reality that their guest was the risen Christ.
The two proclaimed to each other “Were not our hearts burning within us while he talked with us
on the road and opened the Scriptures to us?”
Matt, when you said your last goodbye’s to Waverly by reading the last line from her favorite
book HEIDI “If I spend every moment, for the rest of my days, thanking God for all His
goodness to us, that would still not be enough.” My heart burned within me.
Shannon whenever you write and share so vulnerably your daily journey with Waverly…it is like
having communion. It is a Holy meal. A Eucharist.
Eucharist. Translates from Greek as Thanksgiving. Eu – good. Charis – grace. The good grace,
the good gift, Thanksgiving. The eucharist mystery is that in the broken body and poured out
blood of Christ we discover the divine and saving life. And Christ invites us to do the same in
rembrance. Not just to take bread and wine but to actually live eucharistically: lives broken open
and poured out for one another. For I believe that when we choose to live Eucharistic lives…we
give each other eyes to see the Divine life present with us. We begin to recognize God with us in
the same way that those two disciples did.
Matt and Shannon you have chosen to live Eucharistically. You’ve raised two amazing kids and
have touched us with burning hearts. Waverly is our witness that there is a life stronger than
death and a gift that Sanfilippo is unable to steal.
Frederick Buechner said it this way “there is a holiness deeper than horror and at the very heart of
darkness a light unutterable.”
And again he writes… “Resurrection means that the worst thing is never the last thing.”
-----
These final words are for Waverly.
Waverly, your life has given me a burning heart. And not just me, you have inspired so many.
Thank you Sweetie. I want to close with a poem you inspired. Several years ago your Mommy
and Daddy asked if I would help with your funeral. I locked myself in the bathroom and
cried…because the bathroom is the only place Mommy and Daddies can maybe go to sometimes
be alone. These words have been burning in me since that day. They are what you have taught
me.
-----
Sacred Sorrow
 Dedicated to Waverly Mae McNeil on December 5th , 2015
by David Landt
I didn’t know sorrow was sacred.
I avoided this veiled sacrament.
My fear of suffering led me to shallow spaces
Where I remained safe from love.
Yet love persisted.
Quietly beckoning me to breathe.
Inviting me to inhale life’s true air.
And love turned
Introducing me to Joy and Sorrow.
I was shocked to see them together.
A bit appalled at their marriage
I judged them an ill suited pair.
But they took me into their home
And adopted me as a son.
I wasn’t aware that I was an orphaned soul,
It was their welcome that exposed my estranged condition.
The reality was terrifying
And my fear triggered a reflexive flight,
But I was caught . . .
enveloped by an unwavering parental embrace.
And there in the strong arms of Joy and Sorrow
I felt Both
for the first time
In all of their excruciating splendor.
So great was the height and depth and length and width
of this expansive space
That it tore open every seam of my being.
I was being both drawn in and destroyed.
My end would certainly come soon,
Shattered into a million unrecoverable pieces.
Still they held onto me and whispered warmly in each ear.
“Allow this experience of being broken open.
Do not resist this pain.
For it is the old skin giving way
To your heart’s new spacious size.”
I found remaining to be a grace . . .
An experience of the sacred.
And I have come to know Joy and Sorrow
As a match made in heaven.
-----
Let us close with this adapted prayer from the book Guerrillas of Grace.
O God,
Make of us some nourishment for starved times,
Some food for our brothers and sisters
Who are hungry for hope,
That in being bread for them,
We may also be fed and be full.

Amen.

Thursday, December 10, 2015

Waverly's Memorial Service

We had many people say they wish they could have joined us for Waverly's memorial service and those present commented how meaningful the service was for them. I'm sharing the link for those who weren't able to join us in celebrating her life and grieving her loss.


Sunday, December 6, 2015

My Letter to Waverly

Wavey Mae,

I have been avoiding sitting down to write this letter. It has been easier to busy myself with details to make this day as special as possible. I want each flower and word to be a reflection of your beauty. But the to do list has been finished and all that awaits a checkmark of completion is this letter.

My sadness has been ever present, but an overwhelming sense of pride keeps brightening up the darkness. Reminders of your impact on the world are everywhere. In your short twelve years on this earth, you have inspired love and kindness.

I am so very proud of the way you lived and died. You have borne your suffering with such profound grace. You had a joyful spirit in the midst of excruciating pain.

I miss your crooked smile. I miss twirling your pigtails between my fingers. I miss the softness of your hands in mine. I miss seeing your soulful eyes in my rearview mirror.

Your name means “from the quaking aspen tree meadow”.

When we named you, we knew that aspens were remarkable trees. But it seems to take a whole life to allow a name's meaning to emerge, and we see now, more clearly, how perfectly you were named, Waverly.

Aspens are so unique as trees that it may be better not to think of them as trees at all, at least not in the way we think of a lone oak or an autumn-inflamed maple. Aspens grow in groves because they grow from a single root structure of a parent tree. The root structure is extensive and strong, and often is the oldest part of the grove. These roots bear the trunks that grow above ground, and the roots are capable of withstanding great hardship like fires because of their hidden depth and breadth. All the "trees" that grow up from this single root are like a living family, or a family tree, connected vitally to each other.

We couldn't see when we named you how much you, in your far too short, and at times hard and quaking life, would connect us to each other, powerfully and vitally. Your life drew us together, called us up from our depths to new heights of kindness and love, light and strength. We see better now that we are connected in a love that is stronger than death. Your strengths were often so hidden in and to this world, but they were there, Waverly.

We will walk among the aspens of this world, my daughter; we will listen to the rustle of their leaves. We will recall what lies beneath, and look up into the great, calling-forth Light. A poet named Mary describes what I mean best.

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When I Am Among The Trees by Mary Oliver

When I am among the trees,
especially the willows and the honey locust,
equally the beech, the oaks and the pines,
they give off such hints of gladness,
I would almost say that they save me, and daily.

I am so distant from the hope of myself,
in which I have goodness, and discernment,
and never hurry through the world
but walk slowly, and bow often.

Around me the trees stir in their leaves
and call out, “Stay awhile.”
The light flows from their branches.

And they call again, “It’s simple,” they say,
“and you too have come
into the world to do this, to go easy, to be filled
with light, and to shine.”

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My dear you have shone brightly.

I love you. I love you. I love you.
Mommy

Matt's Eulogy

My Beloved Waverly

“The greatest of poems is an inventory,” wrote the English writer G.K. Chesterton. His point was that in a time of crisis or tremendous loss, an inventory, a simple list of items, can take on newfound meaning, becoming the loveliest and most important of things. A pack of matches or a blanket is of limited value to a person in the comfort of a well-ordered home. However, these things become invaluable to that same person when stranded and alone on a desert island. Indeed such an inventory at a time of desperation would be more lovely than the greatest of poems.

As I think about my little girl and the fact that she is no longer here to touch, to hold, to comfort or care for, I find myself like that man on the desert island, shipwrecked by loss and unspeakable grief. Instead of my little girl, I am left--we are left--with only an inventory of memories of her. And this inventory is to me the most marvelous of poems. In it, we can see glimpses of Waverly, her life, and the love, the joy, the inspiration she gave to me, to Shannon, to her family, and to you. Such an inventory is, at once, a painful reminder of all we have lost and a consolation, comforting balm for wounded souls. I would like to share with you some of the verses of this great poem that are in my possession.

I remember Waverly, the surprise. In early 2003, Shannon and I hoped to expand our family. The March pregnancy test, unfortunately, came up negative. We talked about our disappointment for a bit, but when we went to throw away the test, we noticed that it had turned positive. This was how we learned that almost nine months after Valentine’s Day, we would welcome our first baby, Waverly Mae.

I remember that little baby, who put her mother through a difficult delivery that ended with an emergency C-section. That was the little baby who laid on my chest for hours on end and miraculously slept through the night after four weeks, who took an hour to eat and hated green beans, who cried when the sun set and had a fever and an ear infection every single month until she had a surgery to put tubes in her ears. As a baby she gave shy smiles to strangers, got compliments in restaurants, and became inexplicably upset when she saw someone who looked like me.

I remember Waverly, the joyful, who danced and twirled and ran, who at three years old wore a Dora the Explorer backpack constantly and a Snow White dress for special occasions. She enjoyed puzzles and mazes and could never pass up a carousel without getting a ride. The little girl who literally hugged trees always found a stick to carry, transforming it in her imagination into the most precious of toys. I easily recall how she giggled through thrill rides--usually roller coasters, and the bigger the better--each turn and twist made her laugh harder until she sounded maniacal, at which point she inevitably got the hiccups. She loved birthday parties, no matter whose, and eating black beans and quesadillas at Chipotle, which she mistakenly called Chicago, and spending time at playgrounds from our local favorites in Ohio and St. John’s Wood Church Park in London, to Clemyjontri right here in northern Virginia.

I remember Waverly, the considerate hostess, who regularly convened tea parties for her stuffed animals, giving each a seat at the table and pouring for her mommy and daddy and even the dog and anyone else who walked through our door.  When some of her favorite babysitters, our friends Renee and Keith or “Mr. Peep” as she called him, came over, she would bring all her toys--all of them--and set them on their laps and at their feet as a kind of friendship offering.

I remember Waverly, the music lover.  Her love of music was so intense it led me to do embarrassing things like sing “I’m A Little Black Rain Cloud” in crowded public spaces or say things to friends like “Wiggly Wiggly World really is the Wiggle’s White Album.”  Her favorite songs always got a response out of her, whether it was the Wiggles’ “Taba Naba”, which soothed her when she cried, or “Twinkle, Twinkle, Little Star”, which she knew as the last song before the lights went out for the night. It was at a weirdly competitive Kindermusik class that we first saw Waverly did not fit in with her peers, as she couldn’t quite keep up with the other kids. On the day she was diagnosed with Sanfilippo syndrome, I watched her singing “If You’re Happy And You Know It” in the backseat as we drove home from the children’s hospital. She could still sing for nearly a year after she lost the ability to talk, and I remember seeing her fight desperately to get the words out even when it was no longer possible for her.  

My favorite musical memory, enhanced and preserved because it was caught on tape, is of her singing “Deep In The 100 Acre Woods” to her brother, Oliver, at bedtime.  The best part comes after she finished the song and realized I was clapping for her.  She looked up at me and smiled this big, joyful, bright smile, all because she knew she had my approval and affection. The feeling, my dear, was quite mutual, and it always will be.

I remember Waverly, the lover of stories who could spend hours thumbing through her books--CLICK, CLACK, MOO; SAMMY THE SEAL; ELMER; IMOGENE’s ANTLERS; CORDUROY; and countless others.  A stack of books and an apple could buy her tired parents up to an hour of peace and quiet.  As a toddler she would bring book after book to any person in her orbit she suspected of being literate and demand that they “we-e-e-ad it!”.  She was always attentive and called out anyone who skipped pages or flubbed words, and in her adorably tyrannical way she would demand that you re-read the book that you just finished. We read together throughout her life, all the way up to her very last days, sharing with her my favorites--The Wizard of Oz, The Wind and the Willows, Roald Dahl, and C.S. Lewis.

I remember a wild child, who would steal food off of other people’s plates, who I can see walking around my parents’ house carrying a glass of red wine left unattended, who loved taking off Oliver’s socks for fun, who would find little acts of disobedience slightly hilarious. I remember how she “helped” me with her brother’s diapers, which I sometimes found a day or so later somewhere in our apartment other than the trash can. Sanfilippo turned her into a rambunctious little girl who was challenging for teachers in her early years. Once when I picked her up from school, I peered into her classroom and saw her run by the doorway, laughing hysterically, and about three steps behind her came a haggard teacher, running and trying in vain to rein her in. The school soon after assigned an aide to the classroom to provide some assistance. Those aides, Erin and Chao-An became two of Waverly’s very best friends.

I remember Waverly, the big sister. When Oliver was born, her grandma Linda brought Waverly to the hospital to meet him. I lifted her up so she could see him better, and first word out of her mouth was “Monkey!” Since I always called her Monkey, it was nice to see her accepting her brother into the family so readily and, I assume, affectionately. Her enthusiasm for Oliver was as cute as it dangerous to him.  She always asked to “Hold it!”, referring to her brother, and she would nearly smother him with kisses and snuggles while repeatedly saying “Hi Oliber!” and waving at him, even if they were six inches apart.

She made an excellent big sister and, in so many ways, made life easier for Oliver. We spent the first three and a half years of her life thinking she would grow up into an adult and should be progressing normally.  We were frequently frustrated and concerned by her lack of progress, sometimes mistaking it for disobedience. Because of her, Oliver never experienced our unrealistic expectations, and benefitted from early intervention and our improved understanding of the medical issues he faced from the very first days of his life.

I remember Waverly, the animal lover and baby whisperer. As a family, we loved going to zoos, whether in Columbus, DC, or London. Inevitably, an animal at the zoo--a tiger or an elephant or an ape, horse, or pig-- would form an unusual connection with her, fixing their eyes on her and following her through their habitat. I assure you they weren’t just hungry and this happened too often to be coincidence. She loved her dogs, Wylie and Watson, and the animal encounters at Jill’s House. As a toddler, her favorite toy after her Baa Baa, was the baby doll she received for Christmas when she was two. How she loved taking care of that baby, feeding it, changing it, walking it, and hugging it. Later in her life, it became clear that babies inexplicably gravitated to her, leaning in for hugs and kisses, even when meeting her for the first time.

I remember Waverly, the traveler, and early morning pancakes on the shores of Cape May, and Make-A-Wish trips to Disney World where she squealed like a teenage Beatles fan upon seeing Winnie the Pooh characters. We walked all over London together, never tiring of picnics in its parks and riding in the top of the double decker buses because it was just more fun up there. We explored our way through Germany’s Christmas markets, and she fell asleep right as we started our tour of Neuschwanstein Castle, letting me carry her all the way up and down the castle’s 357 steps. Because of the way young girls love Gilbert Blythe, I felt it was my duty as a father to take her to Prince Edward Island, the home of Anne of Green Gables. We made it in 2013, and it remains one of our sweetest memories as a family.

I remember Waverly, the sensitive soul, who cried when her favorite shows ended or when she had to leave her friends. Waverly would regularly take the hand of total strangers, usually bringing a surprised smile to their faces. I used to joke that she would take the hand of an axe-murderer while he still had the axe in his other hand. One of my favorite memories is Waverly attending therapy sessions with a little girl with Down syndrome named Sophie. I doubt you have ever seen two people more excited to see each other than Waverly and Sophie. They would run across a room to greet one another, huge smiles on their faces, and take each other's hands and dance in circles. Wavey would yell her friend’s name, which due to her hearing impairment and speech impediment always came out as “Dopie”, until they broke down in a giggling fit.

I remember Waverly, a student and a teacher. She first started out at the Wellbeck Nursery in London as part of their special needs program. In 2008, some of the other parents protested to the school administrators that including kids with special needs at the school would impair the quality of their child’s education. That’s right, they basically complained, in front of us, that having Wavey at their child’s school would be a bad thing somehow. It made the day of her graduation from this school one of the proudest of my life. I still have the picture of us defiantly showing off her certificate in front of those other parents.

The contrast with Vienna Elementary School could not be more stark. At VES, Waverly was loved by faculty and students alike, who embraced and protected her, read to her, played with her, and invited her to their birthday parties. To the students at VES, you need to understand that your love for Waverly meant the world to her mom and me. You had a choice; you could have been kind or you could have been cruel. Together, you were kinder than we ever would have hoped and your parents should be incredibly proud of you. We know that losing Wavey broke your hearts too. If only those short-sighted parents in London could see now the impact Waverly had on the moral education of the students at Vienna.

I remember the kid with special needs. It started with developmental delays--limited speech and falling behind her friends’ physical abilities--and ended with her in a wheelchair, with a feeding tube and all the incremental steps in between. I remember Waverly as a night wanderer who could not stay asleep and always left her bedroom to look for Shannon and me. How we wished she would sleep!  It was hard to remember those days, when in her last weeks all we wanted was for her to wake one more time so we could look into her eyes.

One year after she was diagnosed, we gave her a short bob haircut like she had when she was little. However, by this time MPS had made her very fine hair incredibly thick. Rather than a cute cut, it gave her a bit of a hair helmet.  Add to that her chewy necklace, her bright pink wrap-around glasses, and her hearing aids, and you get her first grade school picture. When I first saw it, I wanted to cry at what we had done to her. We were also told that if she was ever missing, that was the photo that would be used to alert the public. With a little time and perspective, that picture became one of my all time favorites of her. Even for her parents, the special needs sometimes loomed large, and we too had to re-learn how to see through the exterior to focus on the image-bearing person. We are incredibly grateful for a place like Jill’s House, which exists solely to serve kids with special needs, like Waverly, and their families. Jill’s House is a place where kids like Waverly were loved, valued, and accepted just as they are. Thank you Jill’s House for supporting and loving our family, and thank you all who support Jill’s House.

There are so many little things I remember about you, Wavey Mae: your pigtails; the little gap between your front teeth; your crooked smile; your infectious giggle and squeaky laugh; the birthmark on your wrist; how entertaining you were playing with your first best friend, Colin; how giddy you got about seeing your grandma or cousin, Mel Moo; the abject panic we felt the time we lost your Baa Baa in the middle of Ohio only to find that a good Samaritan had gone out of her way to save him; how you would say “uh-Oh’d” whenever clocks would chime; that smile on your face the day we met Elmo in the freezing cold after a catastrophic blowout left you wearing only a diaper and your mommy’s sweatshirt; or how you used to beg, excitedly and insistently, for us to let you watch a MOO-bie, MOO-bie, MOO-bie!
 
DUMBO, by the way, was always my favorite of your movies because there’s a line in it that felt like it was written just for you. When Dumbo’s only friend, Timothy the mouse, realized that Dumbo can use his ears to fly, he tells him, “the very things that held you down are going to carry you up and up and up!”

Like the little elephant with big ears whose differences kept him from fitting in, MPS made you different, Wavey. But your loving heart and gentle spirit, MPS could not steal or hide, and I saw repeatedly how you softened the people around you and make them kinder and more compassionate. We were and are so very proud of you. Yes, the very thing that held you down, Waverly, has carried you up, in this world and into the next. You’ve been called home. But we’re still here, and we miss you terribly. I am so grateful for your life. Thank you for leaving us with these wonderful memories, which are to me the greatest of poems. I will treasure them always. I love you, my daughter. May God bless you and keep you.