Waverly Mae

At 7:30 this morning our little girl drew her last breath. 


Fermata

The last resolved orchestral chords,
final resting tones held in a grief-bathed fermata;
rapt listeners poised in knowing silence,
inwardly begging for the music to go on.

Laura Fabrycky


We will give an update on service arrangements once they have been finalized.

Comments

Anonymous said…
I am so very sorry. My heart goes out to you.
Anonymous said…
From one mother to another, crying with you right now. -Erin
Deanna McAlister Hosea said…
Matt, Shannon, & Oliver,

I am so very sorry for loss. I have been watching for updates and praying constantly. I will continue praying for you all in the difficult days ahead. When we lived there, Jenna loved reading to Waverly. She would be so excited when she told me about it. Waverly was a special little girl. There are so many people thinking of you and praying for you. Your faith will carry you through.

The Hosea Family,
Lonnie, Deanna, & Jenna
Angie Bartos said…
Thoughts and Prayers going out to you. So sorry for you loss - precious Wavey continues to inspire!
Unknown said…
Hi. I'm a friend of your mom. I know there are no words. Just know your family is being prayed for today. Sending hugs and love from Idaho.
Unknown said…
Please don't let time stand still. Don't let grief hold you back. When the time comes we want to be as brave as you and Matt. Your poise and dignity are to behold. And you will smile again....you will laugh again. Our Sanfilippo bond will never die......rest peacefully Wavey. Big love to you all.
Paul, Nicky, Georgina, Sophie, Tom and Charlie
Jen said…
My heart breaks for you and your family. I am sorry for your loss of your sweet daughter. I am praying for you and your family as you grieve your loss. I rejoice that her body is made perfect now, but I cannot imagine how much you will miss her. (Part of the TU family)
kidsmom said…
I grieve with you and pray for you all.
hollybf said…
Rest in peace, Waverly. You inspired so many who did not know you personally, myself included. Shannon and Matt, may God draw near. You are all in our hearts.
I am so very sorry for your loss. Thinking of your family in this difficult time.
Sadie said…
I am so sorry to hear of your loss. Thinking of you, Matt, and Oliver at this extraordinarily difficult time. You are all in my thoughts. I hope happy memories help comfort all of you as you grieve.
-Sadie (a CA colleague of Matt)
Anonymous said…
I'm so, so sorry for your loss. I've followed your blog for a few years now and I can't imagine what you're going through, what you've gone through. I hope Waverly has found peace, and that you also find your peace eventually, down this long and winding road. Big hugs to you and yours.
Unknown said…
Our tears, thoughts, prayers, and deepest condolences to you and your family. Our daughter Eliza was diagnosed with Sanfilippo in July 2013 and your blog was one of the first we read (from the beginning), and continue to. We almost didn't want to read any further sometimes for fear of seeing into the future. Your blog has helped us tremendously to face those fears. Your family inspires and so does Waverly and Oliver....today more than ever. We are deeply sorry and The O'Neill family sends our thoughts and love at this very difficult time.
Anonymous said…
You must miss her tremendously. Your family will be in my prayers.
I am so sorry for your loss. I have been following your family's blog for years. I will miss seeing sweet Waverly's gentle eyes and smile. My heart hurts for the void she will leave in your family and this world.

May The Lord draw near to you.
Cheryl said…
So very sorry for the loss of your precious Waverly...may the God of all comfort hold you close in the weeks and months to come.
Nathalie said…
I am so sorry for your loss. There are no words. . .
Carrie said…
I am so sorry. Our prayers are with you.
Unknown said…
God bless Waverly and Oliver. N
Anonymous said…
Praying for you and your precious family. I pray that you feel God's arms around you and you feel the peace that surpasses all understanding.
Elise said…
Crying for your family today. But also imagining sweet Waverly dancing free and happy in the forest like she did in your dream. Thank you for sharing your daughter with the world, it's meant more to me that you can know. Rest well little girl, rest well.
Anonymous said…
Sweet Waverly, you were able to celebrate your 12th birthday but your next will be in heaven. Your suffering has now ended. Your parents and your brother, Oliver will miss you so much. Now you can be their angel looking over them. They will see signs of you everywhere they look.
Unknown said…
I feel so fortunate to have known Waverly in her prediagnosis days-- I will remember all the things she did and played and sang. Not an unkind bone in her body. She lived in London! Regents Park and the Royal Zoo were her playgrounds! She travelled the world and was surrounded by so much love.
Jenny said…
I am so sorry. My thoughts and prayers and tears are yours. Thank you for sharing Waverly with all of us through the years. As a mother who has also buried a precious, special girl I wish for peace and love to rise up and surround you in these holy and difficult times.
Anonymous said…
I am incredibly sorry. Sending prayers from Italy.
Kate said…
I am so so sorry to hear this news. You are all being held in a lot of hearts right now.
Sam said…
Praying earnestly that you know the tender embrace of our Father as you grieve for your precious Waverly.

Love you all...
Sam
Anonymous said…
I am so sorry for your loss. Prayers, tears, and hugs to all of you.

Gail
Anonymous said…
I'm so very sorry to read this. Sending you prayers, love and strength. Thank you for sharing Waverly with us, her beautiful spirit was undeniable.
Unknown said…
You've been in my thoughts all day. Praying for you.
Brian said…
So very sorry to hear of your deep loss. Our thoughts are with you. -Brian Newell and Tim Quinlan
Unknown said…
21 years ago, I lost my son Mikey when he was nine years old to Hunter's Syndrome. At such a time, most words and condolences are lost in the darkness of mourning. I remember some that even made me angry.

I wish I could tell you that the tears will eventually stop or that the pain goes away. Sadly, time does not heal all wounds. I still miss my son and the tears still flow.

In time and reflection, I realized how much my child changed me and made me a better person, more compassionate, sympathetic, patient. He lives on, not only in my heart, his spirit lives on in the best of me.

It took me years to figure that out, and years more to remember how he loved to see me smile, and how his face would light up when he saw me. Eventually I decided he would want to see me smile, so I try my best still, to find some happiness every day, so that when he looks down at me, his face will light up as I remember.

I'll pray for your little angel, and for your family. May you find comfort and peace in her memory.
~Michael J. Nappi
Anonymous said…
I am also a Sanfilippo Mom and I wanted to send my deepest sympathies to your family. I am so sorry
Anonymous said…
You don't know me, but I've been following your story for the past couple of months. The dignity you have shown is awe-inspiring. Waverly was lucky to have parents like you.
lesley said…
I am so sad for your loss of your lovely daughter.
Anonymous said…
My heart is broken today for you all. Thank you is not enough for sharing your most precious gift with strangers. We came to love your sweet Waverly, and we grieve with you now. Sending you prayers, light and love as you get through the next week. It is something no one should have to do. -Kate
Anonymous said…
My heart just breaks for you all. Blessings and prayers from Oklahoma.
Unknown said…
I'm devastated for you and am praying and thinking of you all- may the light of her beautiful soul continue to shine in your hearts and know you will see her again one day.
Anonymous said…
I am so deeply sorry for your loss. I will remember Waverly fondly from the time I spent volunteering and working with her at Jill's House. She, like many of the other children there, inspired me in my path to change careers in my 30s to become an Occupational Therapist, which I will have achieved this December. I am eternally grateful for Waverly and my thoughts and prayers are with you, Matt and Oliver during this time.
So sorry for your loss. You are in our prayers!
mcmuff said…
So incredibly sad. You are brave parents. My heart is with you.
Cindy Stogsdill said…
So very sorry for your the loss of your precious Waverly. I have followed your blog for years and know your sister Tammy and her family from church. I pray that your beautiful memories of your sweet girl will be a solace to you as you grieve her loss. Love and prayers from Camillus, NY.
Anonymous said…
There are no words. I'm just so sorry.
KW said…
Following your blog from afar, a friend of a friend. I am so sorry for your family's pain of being separated from your sweet, beautiful Waverly. I am thankful that her diagnosis was NOT eternal and she is healthy and healed at this very moment. She loved and love wins. May you rest in the knowledge that she is in her Savior's arms and so many of us are praying for you in these dark days. I am grateful your family will be reunited in His presence one day. I pray especially for His peace that passes understanding because some things make absolutely no sense in this world.

Shalom,
Kimberley
Daria Darnell said…
I am so very sorry to hear of Waverly's death. My heart, my prayers, and my best wishes are with you.
Anonymous said…
Sometimes words help. Sometimes not.
May you all have peace.
Peace. *~~
Anonymous said…
Perhaps they are not stars in the sky, but rather openings where our loved ones shine down to let us know they are happy. ~ Eskimo Legend

My thoughts and prayers with you.
Kathie Jewett said…
I am so sorry for your loss. I will continue to pray for your whole family during this difficult time. I'm Ryan and Kam's cousin and have heard wonderful stories about your whole family over the years. Bless you both for your strength over the years.
Steph said…
We took part in the birthday card/Donut drive for Waverly a couple of years ago, and were so touched and inspired by your family's story. We cannot fathom your unimaginable loss..Our hearts are with you as your angel takes flight.
TerraD said…
So so sorry. I have been following your family for years and will continue to pray for you all. God bless.
Alison Storsve said…
I am so terribly sorry for the loss of your beautiful daughter.
Jan A said…
I am so very sorry - my heart breaks for you all. I've followed your story for a number of years now and dreaded this moment so. Bless you.
Anonymous said…
Sending our deepest sympathies to all of the McNeils.

With sadness,
Duffy Winters and Dan Onstad
Dawn said…
I am so incredibly sorry. There are no words.
Unknown said…
Heavy, heavy hearted this morning and yet rejoicing that your sweet girl has been fully restored in the presence of our Savior. May you experience His peace that passes understanding in the coming days. Lots of love to you, McNeil family.
Unknown said…
I am so sorry for your loss. My thoughts and prayer for your family
Anonymous said…
So deeply sorry. There aren't words that can even come close to offering comfort. "...God's Spirit is right alongside helping us along. If we don't know what to pray, it doesn't matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans." romans 8:26-28 msg
Jas said…
I know that nothing I can say will ease your pain, but I want to thank you for sharing your sweet Waverly with us. She was clearly a very special little girl with an amazing spirit. I'm sorry for your loss and my thoughts and prayers are with your family.
Anonymous said…
I am so very sorry. Her life was full of love, and she was given the kindest family possible.
mommyoflove2 said…
I have been following your blog quietly for many years and I just have to say I am heartbroken for you. So thankful that Waverley is running and laughing and probably singing praises to Jesus right now but so so heart time for you as her parents, having to face life without her. My prayers will be continually with your family.

Heidi
Anonymous said…
I have been following your blog for a few years now. So sorry to hear of your news, and wishing all of you the very best.
Anonymous said…
May she rest in peace and may your family find peace as well. We cannot imagine how you are feeling. God bless you all, Skye, Sheridan and Tia
Dominique Deleage said…
Shannon,
I am so very sorry to hear this! My heart breaks for you a million times. I will keep you in my thoughts and in my heart, and always remember Waverly.
Hugs to all three of you.

Dominique Deleage
Charlie's mom
Anonymous said…
I am so very sorry for your family's loss. By depicting Waverly as vividly, generously, and lovingly as you have, you have ensured that she will live long in many memories, always as a reminder to appreciate the little things.

Thank you for your honesty and your loving example.

Peace to you and all of Waverly's kin.

~amc
Alison said…
So very sorry for your family's loss Xx
Tracey said…
So sorry for the loss of your beautiful precious Waverly. Praying for your family.
Unknown said…
Shannon, Matt, and Oliver (and Family)

There are no words, only love...because you loved her so well. You parented her so well. You befriended her so well. She is so loved and what a precious gift for Wavey to have had her mum and dad as her biggest fans throughout her entire journey. You raised a sweet sweet girl!

xoxo
Astrin Ymris said…
I am so very, very sorry. I've delayed checking this blog for fear of this very news.
Pamela said…
I'm so very sorry :( My heart hurts for you, Matt, and Oliver. I've been following your blog for a number of years - I think I started reading around the time Wavey and/or Oliver received their diagnosis. I ran across this poem today and immediately thought of you.

"If before you were born, I could have gone to heaven and saw all the beautiful souls,

I still would have chosen you...

If God had told me, "This soul would one day need extra care and needs,"

I still would have chosen you...

If He had told me, "This soul may make your heart bleed,"

I still would have chosen you...

If He had told me, "This soul would make you question the depth of your faith,"

I still would have chosen you...

If He had told me "This soul would make tears flow from your eyes that could fill a river,"

I still would have chosen you...

If He had told me "This soul may one day make you witness overbearing suffering,"

I still would have chosen you...

If He had told me, "All that you know to be normal would drastically change,"

I still would have chosen you...

Of course, even though I would have chosen you,

I know it was God who chose me for you."
-Terri Banish

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