Anticipating Grief

This has been an agonizing week. I am by nature an impatient person who likes to plan and have control of the situation. I am also a woman who desperately wants to cling to every breath inside of Waverly. We have been holding vigil by her side, sleeping next to her, one of us always near her. We are anticipating the absolute worst moment of our lives, knowing it is coming to take her away from us.

Wavey has proven to be a fighter. Sanfilippo has weakened her body, but it has strengthened her spirit. She has fought for every step, every milestone, every developmental age. And she clung to them as the disease ravaged her brain.

Each breath brings a sigh of relief and ramps up the anticipation that the next one could be her last. My chest hurts, my head is sore, my eyes are swollen from tears. I am exhausted in every sense of the word.

Doubt creeps in and I question my choices. Anger creeps in and I want to explode. Denial creeps in and I am convinced she will wake up healthy. Sorrow is every present and knocks me over in waves of sadness. And through each emotional swing, love is at the center. I love my little girl fiercely. I would give anything to trade places with her and take her pain away.

Please pray for Waverly. Pray that we are able to control her pain and seizures, so she can be as comfortable as possible through this end of life process. Pray for Matt and I as we navigate this together, both of us experiencing a myriad of emotions and never at the same time.


Anonymous said…
Shannon, I am praying for you, Matt, Waverly, and Oliver. ❤️ Isaiah 26:3
Love, Michelle Byrn (TU '98)
Kim said…
Praying for you all. Thank you for keeping us posted. Lots of love to sweet Wavey.
Beatrice Moreno said…
I am sooo sorry you two are going through this difficult trial. Know that so many of us are praying and thanks for letting us know how to pray more specifically.
Anonymous said…
Lord, please bring waverly comfort. Take away her pain and give her family a sign that she is content. Wrap your arms around this sweet family and coat them in your love for you too are mourning with them because you love them. Please Lord, hear my prayer.
Gigi Galbraith said…
I am amazed at how eloquently you write about your journey, I admire your strength and endurance. You have a wonderful way of communicating to us what is happening in your life with such raw emotion. I shed tears with you and pray that the last part of her journey her on earth is peaceful. For she will be forever loved and cared by the other angels that have gone before her.
Jill V.V. said…
Shannon,I pray for Waverly everyday. I pray that she is comfortable and painfree. I also pray for you and Matt, that you have angels of strength and courage to help you through this dark & difficult time, and I pray for Oliver. XO
Anonymous said…
Sending comfort to Waverly and strength and perseverance to you and your loved ones during this difficult time.
Jen said…
My heart is so heavy for you both. Thinking of and praying for you all day, every day, checking for updates so I can know how to pray better. No words other than just crying out to the Lord on your behalf. Praying His peace and presence and covering for your journey.
NM Wisner said…
We are praying for peace and comfort and that Waverly will continue feeling safe in your love, and that you will know this too.
NancyAnn said…
My prayers are with you all including Oliver. I can not even imagine the pain and anguish you feel. I know the Lord is with you all on this roller coaster ride, but I also know that sometimes you feel abandoned. For Waverly I pray no pain or fear for her and that when she sees the light she knows she knows she will be healed forever and some day be reunited with you all. Prayer and Love from Oregon
Anonymous said…
Praying for peace and comfort for you and your family.
Kathy said…
Know that many people all over the world are praying for your precious daughter.
Kandi said…
My heart is aching for you. I can't imagine... But thankfully God can. I offer you my thoughts and prayers. I am so very sorry.
MJ said…
Praying over here. May you know Him to lay next to Waverly and stroke her hair. May you know Him to hold your hands. May His presence be your Peace. Oh Jesus let it be so.
Anonymous said…
Truly, love shines forth from every post you've written over the years (and I've read most). Where love is the deed, it is always the reward--and a lot of love is streaming towards your family right now. Peace to Waverly and all of you during this transition. I doubt anyone could've done more for your lovely girl than you and Matt have done. Blessings.

~amc, a friend of a friend
Unknown said…
Praying for all of you!
MJ Patch said…
Praying for all of you!
Michelle Hill said…
Prayers to your little sweetheart and for your family. "Beyond the door, there's peace I'm sure and I know there be no more tears in Heaven"��
Unknown said…
Praying for all of you. You don't have to hold on, just let the Almighty God hold you all and your daughter, his strength and love is with you .
Unknown said…
Praying for all of you. You don't have to hold on, just let the Almighty God hold you all and your daughter, his strength and love is with you .
Anonymous said…
Praying for you, Matt, Oliver and Waverly...may God hold you in the palm of his hand.
Dawn said…
Many prayers. :(
Kavita said…
Thinking and hoping for your family. Your family is amazing.
Jill L said…
We are with you in mind & heart. Right beside you you in love.
Cathy B said…
Sending love and prayers for all of you.
Anonymous said…
Wasp’s Nest by Emily Rapp

For Becky Benson

There is nothing I understand.

The nest fell to the ground. Framed

first in the window at five o’clock,

holes like a heart,

heat like a heart but empty too-

It is mid-winter, the wasps

half-resurrected. Why a space to house what isn’t there?

Here today, gone tomorrow.

There is nothing

I understand-

This moment spinning flakes

at the cold window, scabs

of old songs, old

curses. Valentine,

there is no veil

between the world


end of everything. Lying

in bed with pieces of

the fallen mind lifted

from a body,

hot snowball thrown into the gravel walk,

hell-bound rocket.

Where is it?

I found it easily

under the pile of dirt beneath

the window, snow-pressed, blown

along side, replacing what you wanted to see.

All night it was here and now what?

It is early. Time

to leave

the top of the staircase.

The upper hand

The lower hand

I have no hands,

no help.

Somewhere nearby,

far off, around this corner-

my baby swings in the bitter

peace of the dying.

If only I could strike!

Stinging and wakeful, touch it,

take it

in my mouth, end all desire-

Silence at five in the morning,

downstairs, listening: Where is it? Where-

Here all the houses are burning

but I am the only one looking

and I understand nothing

of this place.
Kristin said…
I can't imagine what you must be going through. Thinking of you all during this incredibly difficult time.
Anonymous said…
Praying for Waverly and all of you, her sweet family. May you find comfort and peace in God, your family and friends and the many worldwide you have touched with your story and your love.

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