Yesterday was a very long and difficult day, yet we’ve been told* that today, the official day after surgery, is nicknamed “Crabby Day” because the after-effects of surgery (anesthetic, swelling) are the worst.
*by our “brain tumor coordinator”…imagine a wedding coordinator, but substitute the white dress and flowers for a brain tumor and OR privileges.
This is a concept that’s hard to get my head around as my life paradigm doesn’t include a day thats actually worse than brain surgery, knowledge of malignancy/spreading, and taking turns laying on the PICU bed beside our son to keep him from thrashing or touching an incision wound that stretches hairline to hairline.
How do we even begin to wrap our minds around this?
Standing by Chase’s bed late last night, our dear friend and pastor wisely threw the lifeline.
Moment by moment grace.
Chase is crying right now, so we comfort him, and then the doctor comes in, so we speak to him. There is no tomorrow or next week or six months from now…just this moment and the grace God overwhelmingly supplies. And with that grace, often great joy. The smallest things become incredible victories.
Yesterday was a long and difficult day, yet our son emerged from fairly major brain surgery breathing on his own and tried to get up and stand/walk within a couple hours post op. (he also punched several nurses, but I hesitate to list “punching medical staff” as a serious cause for joy)
Yesterday was a long and difficult day, yet the area of blood at the front of the head seen in the post op CT scan -that worried the surgical team and led to discussions of needing to go back into surgery- stayed the same and even slightly decreased in a CT scan a few hours later and re-opening the head was no longer necessary at the time.
Yesterday was a long and difficult day, but we were overwhelmed with the love and support on every side, both in person and via texts, emails and social media. Truly a perfect blend of crying when we needed to cry and laughing when we needed to laugh (like the moment Chase’s grandfather assured a room full of people that he was fine and then tried to exit the room via the bathroom…though, in his defense, the hospital did put the bathroom door next to the exit door…)
And last, in this very moment, yesterday was a long and difficult day, but as I sit here writing in the pre-dawn hours of “Crabby Day”, Chase’s overnight nurse just informed me that he could have something for the pain if he wanted…because he’s had (and needed!) no pain management drugs since shortly after post op.
I guess what I’m trying to say is that words like “malignant”, and “spreading”, and “chemo” are all too big to understand in this moment, but that’s okay, because God is all over that, and I can just hold my son.
Grace.
Moment by moment…
I continue to pray.
Oh Ellie. I wish I didn’t have to work and I would be right there, with permission of course. What you said was right on: Moment by Moment. That is good advise. When you are ready, I’m here to talk. We love you guys and are reliving almost the same situation all over again.
Love to you and Bob and especially Chase.
God Bless you and keep you…..
Tricia DeJong
Yes, moment by moment grace is what I often advise people. You have such wise perspective, Ellie. I’m amazed by you. I will continue to keep Chase in my prayers- and you all by extension. You’re in this together. And I know how that post-surgery grumpiness can be and assure you it is no match for your family. Love to you all!
Sending prayers and love from Lisa Kerns’ family in CT and MA – we are so saddened to hear this news and want you to know that you are all – and especially Chase – in our hearts at this difficult time!!! I am holding my two boys extra close today, with the knowledge that life is such a precious, fragile gift.
Love,
Michelle
I am reposting all your updates on my facebook page and there are more brothers and sisters in Nebraska, Michigan, Minnesota, Washington, Texas, Missouri, Kansas… and more! Praying for you all. As I read your words this morning I was reminded of the lyrics to “Held” by Natalie Grant. God is holding you as you hold your son!
Who told us we’d be rescued
What has changed and
Why should we be saved from nightmares
We’re asking why this happens to us
Who have died to live, it’s unfair
This is what it means to be held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held
This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held
If hope if born of suffering
If this is only the beginning
Can we not wait for one hour
Watching for our Savior
If I lived even a bit closer than the 1,164 miles that separate us, I would bring your favorite Starbucks latte – And, of course, your beverage would be a Venti! (Italian for “twenty.”)
And we would read, ponder, wonder, proclaim, praise, cry, sing, and worship by faith with our eyes fixed on Christ Who is Our Hope, the truths of Psalm 20!
I love you, Ellie, my sister for eternity, sojourning with you in prayer!
PSALM 20
1 May the Lord answer you in the day of trouble!
May the name of the God of Jacob protect you!
2 May he send you help from the sanctuary
and give you support from Zion!
3 May he remember all your offerings
and regard with favor your burnt sacrifices! Selah
4 May he grant you your heart’s desire
and fulfill all your plans!
5 May we shout for joy over your salvation,
and in the name of our God set up our banners!
May the Lord fulfill all your petitions!
6 Now I know that the Lord saves his anointed;
he will answer him from his holy heaven
with the saving might of his right hand.
7 Some trust in chariots and some in horses,
but we trust in the name of the Lord our God.
8 They collapse and fall,
but we rise and stand upright.
9 O Lord, save the king!
May he answer us when we call.
And so now, with coffee in hand in a Starbucks mug that’s only 16 oz. 😉 I am singing these words in prayer for you:
Day by day, and with each passing moment,
Strength I find, to meet my trials here;
Trusting in my Father’s wise bestowment,
I’ve no cause for worry or for fear.
He Whose heart is kind beyond all measure
Gives unto each day what He deems best—
Lovingly, its part of pain and pleasure,
Mingling toil with peace and rest.
Every day, the Lord Himself is near me
With a special mercy for each hour;
All my cares He fain would bear, and cheer me,
He Whose Name is Counselor and Power;
The protection of His child and treasure
Is a charge that on Himself He laid;
“As thy days, thy strength shall be in measure,”
This the pledge to me He made.
Help me then in every tribulation
So to trust Thy promises, O Lord,
That I lose not faith’s sweet consolation
Offered me within Thy holy Word.
Help me, Lord, when toil and trouble meeting,
Ever to take, as from a father’s hand,
One by one, the days, the moments fleeting,
Till I reach the promised land.
Thinking of you and praying for your family.
What a testimony to God’s faithfulness! His mercies truly are new every morning!
I continue to pray for strength and wisdom for you and God’s healing hand on little Chase.
Love, Gail
Oh, Ellie. My heart aches with you. Praying – believing Jesus will tenderly meet your deepest need, moment by moment. May the God of hope fill you with all joy and peace as you trust in Him , and may you overflow with hope by the power of the Holy Spirit. Ro 15:13
You don’t know me, but I am not only your sister in Christ, but also a parent who has experienced your pain….I know it firsthand. A dear friend of yours and mine, Annamarie Holmgren, shared your story with me and asked me to join her in prayer as one who understands the power of our awesome Lord in situations just like these.
My daughter, Katie, was diagnosed with a malignant tumor in her left thigh at age 12. She is 14 now. By the time we first saw it in an MRI, the tumor had consumed 12″ of her thigh bone…I remember it like it was yesterday….how the site of that tumor literally took my breath away….leaving me with a silence and sickness….and then a flood of fear, faith and every other emotion all at once while I sat frozen and motionless.
BUT….by the grace of God, my daughter Katie survived a radical surgery to save her leg, 12 months of aggressive inpatient chemotherapy and is healed and living life joyously today. Oh how I pray that this is your GREAT HOPE today. With everything in me, I will help intercede to get you there…asking the Lord Almighty to get you to the place that is your promise in Christ that you cannot yet see with your physical eyes!
We too had a precious friend in Christ share that same message of “moment by moment” with us at the beginning of our journey. Oh how I praise God that He sent someone to you to tell you the same thing…it gives me peace that He is holding you. You will find that this truth is the foundation of how you will remain at peace and how you will win this battle! At first, I had to learn the hard way about living “moment to moment”….my mind kept wanting to go to the “next step”…projecting things further out than the step I was on…or trying to imagine what the future may look like. When I did this, I literally started having panic attacks…I felt like I couldn’t breath….if you know me (and Annamarie would attest), this is something that I was not prone to as I had experienced my Lord walk through many a storm in my life and fully knew what He was capable of doing. But this one with my daughter was different. And I had to learn to take it one day at a time…PRAISE GOD….He NEVER ceased to meet me with the grace I needed every step of the way. And I found myself, in an inexplicable way. (just like you) being able to even praise Him along the way when the circumstances didn’t appear to be praiseworthy.
Your family is so precious to the Lord….and little Chase is even more precious to the Lord! I’m privileged to be alongside you in this journey where I take my place, among many, who will be praying….and praying….and praying….until you see the finish line!
Love in Christ,
Leslie Karp
Bob and Ellie,
Rob and I have been praying for you guys. My heart sank when I read your post yesterday, but I am so blessed by your strength and trust in the Lord. We will continue to pray for you and for your family. I had a great time playing with 3 of your kids yesterday. We love you guys!
May the peace and grace that surpasses all human understanding keep guard over your hearts and minds in Christ Jesus. Phil 4:7
Dear family,
We’re friends of Angela Walters, and we are praying for you, too. I’ve reposted your story on my facebook page, and more brothers and sisters will be lifting you up in prayer, also.
Kathy
Dear Bob & Ellie,
Greg and I have too been sadden of your trial with Chase. I am not fancy with words and am not real good at just typing up any scripture that fits a situation. I wish I was able to help more, but having two little ones of my own has kept me at home. We have been continually praying for you guys and grandma and grandpa. We love you all.
Thank you as well for keeping us updated through your wonderful writing that God has blessed you with.
Blessings,
Julia
Dear Bob and Ellie~~Praying Psalm 62:8 over your sweet family tonight! “Trust in him at all times, you people; pour out your hearts to him, for God is our refuge.” Sending prayerhugs your way!
Hi,
We’ve never met, but we have mutual friends (P&K Johnson). Just wanted to let you know that I’m praying for you. That grace you talked about? I’ve seen it firsthand through some hard things in the last year. Our Savior truly gives it for every moment, as each moment comes. So I will be praying for your family, and trusting the Giver of grace with you.
Leah
I’ve never met Chase, but after reading yesterday’s post, I haven’t been able to get him out of my mind. I’m praying — fervently — for him and for you. And yes, moment by moment it is. Lean hard on Jesus, friends.
May your son continue to heal. It’s heartbreaking when children are very ill. Our daughter suffers from SMA Type 2. Holding your son is the best medicine for all of you…and no matter what happens, love will hold you as well.
I am Karen (Larry) Speigler aunt. I too will repost your wonderful touching story so that more will be praying for that precious child will come through this. Moment by moment is so hard to do but God is there to help you through all of this.