"Sad" Doesn't Even Begin To Define It

Last night, a few hours after we received the awful news, we packed the kids up in the stroller and took a very long walk through Regent's Park. It is probably our favorite place in London. We always seem to end up there when we are thinking. Matt and I are both overcome with so many emotions that it is difficult to even attempt to explain how we are feeling. We are mourning and weeping, angry and screaming, stunned and numb. We have entered a place where not many people have been. It is isolating and lonely. I think that I have lost my ability to ever feel joyful again. Even in the midst of laughter and happiness, I am all too aware that my kids are facing such a tough road ahead and they going to die much too young.

Comments

Lizze said…
I don't have the right words. I don't even know that I have to wrong words. I am praying extra hard for you all. *hugs to all*
Jon Morgan said…
I just wanted to let you know that I'm praying for you. I received the link to your blog today, and have been reading about your children and looking at their pictures. They are beautiful.

Jon Morgan
Unknown said…
I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

As the thunder rolls
I barely hear Your whisper through the rain
“I’m with you”
And as You mercy falls
I raise my hands and praise the God who gives
And takes away

I’ll praise You in this storm
And I will life my hands
For You are who You are
No matter where I am
Every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can’t find You

As the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth


Written by Mark Hall / Music by Mark Hall and Bernie Herms ©2005 Club Zoo Music (BMI) / SWECS Music (BMI) (admin. by EMI CMG Publishing) / Word Music, LLC (ASCAP) / Banahama Tunes (ASCAP) (admin. by Word Music, LLC)

Behind the Song:
“If there ever were a test of our faith – if there ever were a test of the motives of our worship – it is when a storm rolls into our lives. We watched and prayed for a precious little girl named Erin Edwards struggle with a deadly disease for several years. The courage, the witness, and the worship of Erin’s mother Laurie inspired this song. Sometimes God calms our storms. Sometimes He chooses to ride them with us.” - Mark Hall (Casting Crowns)
Erica said…
I am praying for you, that God would bring true joy back to your hearts. I am praying that He will comfort you and keep you in ways that take your breath away. I am so sorry for this blow.
piqua said…
Thanks to all who have sent comments of support to Matt and Shannon. I am pleased with my sweet grandchildren and their parents who have done so many things right, and very saddened by their bad news. Who know as you were growing up that there would be a valley this deep for any of you. Pray that the great cloud of sadness and grief would lift from Matt and Shannon. It is all right to be angry and to condemn the enemy--the thief and the destroyer--a cruel disease. We value your prayers and your encouragement and hope for a cure to be discovered, which would be a true miracle.
emeraldsue1 said…
Praying for all of you! Your kids are beautiful inside and out and God has a plan for their lives.

On a sensible note, if you are going to Duke, you may want to get in touch with Nathan...check out his website: http://cfhusband.blogspot.com
I am sure he can give you some advice for staying there...don't know him personally, but he and his wife and daughter have been there for a while.
Lisa said…
There are no words to express my thoughts right now. I cannot imagine your pain but I do know a God who understands all and care about all. I have been following your blog and will continue to follow your journey and to pray for God to lead, comfort and protect you in the coming months.
Amy B said…
Shannon and Matt-
From the first time I read of Waverly being diagnosed, there has been such a "fight" in my heart to fast and pray for you and them. I think it's because deep down I know that this fight for your children, (the ones God calls your reward, your blessing and your gifts from Him), is not against flesh and blood but against spiritual things we cannot see. God is the Alpha and the Omega, not only did He create Waverly and Oliver and know them in your womb but He also has the final and last word over their lives now. I want so badly to speak hope into your lives in that Jesus came and died to give us victory in such things as this and yes, I am speaking of complete healing! All the promises of God are a YES in Christ (2 cor. 1:20) and He heals all our diseases (Ps. 103)! I pray you will hear my heart as I write this as I am not eliquent in speach but have a burden to see you witness the miracle of God in your children. Praying for your family, Amy

I was wondering if I could get your address, I need to send you something. You can send it to me via facebook or stebarnard@yahoo.com.
rubberpoultry said…
This comment has been removed by the author.
rubberpoultry said…
Shannon and Matt,

What you are feeling is unimaginable. We cannot know the pain you are experiencing, but we weep with you. Though I feel powerless to ease your pain, I can't help but come here daily and empathize with what you are going through. I feel a great deal of sorrow in the quiet moments when I am thinking about your family.

I can't even begin to understand this. I don't even know what to pray, but I know God knows what my heart is saying, and that he is listening to those inexpressible sentiments.

I pray that joy finds you again. I pray that the rough road is paved with more moments of happiness and peace than you could ever have imagined. I pray that in your isolation, you will feel the presence the Spirit, and all of your family and friends that are encircling you with their love.

With a very heavy heart,
Jason Moore
Katie said…
Dear Matt and Shannon,
You don't know me, my name is Katie and I heard about your family and this news through my Aunt Sarah DeVries. I just wanted you to know that I will be praying for you during this unimagionably difficult time. I pray that in the midst of this terrible storm, you will find peace and that God will restore joy in your hearts once again.
Rafael said…
This comment has been removed by the author.
Rafael said…
Shannon,

Try and whistle Wizard of Oz tunes - Remember Ding dong the witch is dead and I wish I had a brain?

It's all I can think of. Hate to think you're suffering so much. Wish I could carry your pain for you - I gladly would.
Henry and Mom said…
My former sister-in-law, Jennifer, sent me a link to your blog today. I have spent an hour reading about your children and their health difficulties, and praying for you all. My heart is just breaking for your little family...

Blessings to you, and prayers for hope and strength and peace.

--Sara
http://snicketyone.blogspot.com
Brittany said…
Shannon - I am so sorry. My heart is breaking for you and your family. We will keep praying for a miracle for both your children, for unimaginable peace and strength for you and Matt, and for Christ to become so real to you, Matt, Waverly and Oliver in the midst of this terrifying darkness. I'm so sorry...I can't even being to imagine the grief and agony of this experience. I will pray without ceasing for you...
kflyingcircus said…
Praying for you both and the long road ahead. I can't even imagine, as a parent, knowing you can't do anything really, to help your babies out of this one. I do know that God has created these two little blessings and has a purpose for Waverly and Oliver's lives, no matter how short. He will use them for His glory! I pray you will be able to find HIS joy amidst this difficult season.
Mike and Sarah said…
I liked what Rafael said that he wishes he could carry some of your pain. I think that describes how I'm feeling (and so many others). It seems so unfair that one family is asked to carry such an extreme burden. God brings you to my mind so many times throughout the day and countless prayers have been uttered on your behalf. Sometimes I wonder if God didn't hear them... why He couldn't have spared Oliver. But, I know He did hear all of our prayers and His way is sovereign. I just wish His plan for you had been different.
M.D.Mattes said…
Matt & Shannon,
I don't have the words to speak, nor the words to pray. And yet the Holy Spirit hears and is listening intently to our inward plea. I cry out for a miricle and a cure for both Waverly and Oliver. May hope in Christ give way to joy once more... May God bless you both and your children in every moment ahead. Grace & Peace. Mike & Beth Mattes (from Grace Central)
Sara Shady said…
Dear Matt and Shannon,

Jamie and I are sitting here thinking of what to say, and all words are so inadequate. Waverly and Oliver are so beautiful and so innocent and should not have to face this. You should not have to face this. Know that we love you and are praying for you. Please also know that when we say that we are praying for you, we don't just mean that as evangelical-speak. We are praying earnestly with our whole hearts and souls. We trust in the passage that talks about how the Spirit prays for us when we do not have the words to express what we want to say. -- Jamie and Sara Shady
DAN BUCK said…
We are weeping with you dear friends. I am so, so sorry.
Heidi said…
I've been sitting here for 40 minutes trying to think of something to say. I can't come up with anything that someone hasn't already said.

Just know that we're thinking about you and even though we hardly know you, we're parents too, and we're in this with you for the long haul.

Heidi and Aaron Mann
Rukshan said…
Shannon and Matt -

Don't know if you remember from me from Taylor. I heard about your kids from Deb and Steve Austin. My heart breaks for you and may God give you His peace. You are in my prayers.

Rukshan Fernando
Greg Nelson said…
Our Sarah (Mingle) told us the news today. We are praying, hurting with you and wrapping our arms around you. There are tears as we post and view pictures of the angels on your site.

Greg and Pam Nelson

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