Over the past few days, several of our doctors and nurses and encouraged us to "just think about today".
What needs to be done today?
What are the mountains we are facing today?
What are the small victories today?
We're already realizing the wisdom of this as we go through waves of feeling overwhelmed. For me, especially over the past 24 hours, it seems to take nothing to make me weep. A kind word from a doctor. A new nurse telling us Watts looks handsome in the pictures we have over his bed. Reading Piper a bedtime story with a little boy as the main character. Singing her "Jesus loves the little children" as she falls asleep. Realizing I haven't seen Watts open his eyes in four days. Mustering up some strength in my voice as I walk in the hospital room and say, "Hi buddy, papa's here now". I feel like I've been grieving the losses that are coming our way over the next couple of years and, at the same time, fearing the reality that I don't know what those losses will even be.
Just think about today.
Or, put a different way:
Sufficient for the day is its own trouble.
We've felt incredibly loved and supported over the past week, held up and blessed by a community of those near and far. But, Good Lord, how the quiet moments are hard.
Friday, May 31, 2013
Quick update
The infection in the groin area (one of the reasons we originally went to the ER) looks great today and the lesions are healing. Numbers are also improving and everyone seems encouraged. Only setback is that they are having to redo the bone marrow test from yesterday because the first sample clotted before they could test. But overall a good morning today.
Rambles
Day 6. At the end of a long day, I sit. Music plays quietly next to
Watts and the ICU is quiet. Today has been slower, more time to ask
questions, more time to come up with a game plan.
Watts is stabilized and sedated, sleeping peacefully amidst the tubes and wires and beeping machines. His body is swollen, but his color is better and he's fighting like a champ.
We've been trying to be here for Watts, talk to a million doctors, sign papers, get a crash course on medical jargon/leukemia/infections, pump every 2 hours to salvage supply, and attempt to process and wrap our heads around all that has happened in the last 6 days. All while trying to somewhat normalize everything for Piper. Sweet, strong Piper. The past few days have been incredibly rough on her tender heart.
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6 days. Last Thursday, we grilled out on the back deck and laughed at the kids' funny faces and antics, a week later we are here. Last Friday morning, we all went on a 3 mile run and got bagels at Breuggers, this Friday we will be at Brenner. How quickly life changes.
Taped above Watty's head are six pictures of him smiling and laughing with his papa, sister, and me. Even in only 6 days, it's hard at times to remember what life was like when everything was normal, when he was "healthy."
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His blessings cover us. Throughout the day we glimpse them, even in the midst of chaos. I've started jotting them down, in true Ann Voscamp style, a chronicle of beauty through all of this.
That we have a diagnosis and treatment can start.
The humor (and confidence) of the ambulance respiratory transport team that took Watts and me from Moses Cone to Brenner.
The kindness and awesomeness of Dr Sam Ajizian.
Ronald McDonald House.
Love and support of everyone.
Supernatural strength for Michael and me to function under all of these circumstances.
And the list goes on and on.
---------
Throughout the past six days, the words, "He makes all things new in His time" have been pounding through my head... while holding my thrashing fever-stricken son in the ER, while jogging behind the stretcher towards the ambulance to head towards Brenner, while sitting in the little room with the doctors receiving the worst news of my life. He's been in every moment through all of this...dark as it might seem, I feel cupped in His hand.
Watts is stabilized and sedated, sleeping peacefully amidst the tubes and wires and beeping machines. His body is swollen, but his color is better and he's fighting like a champ.
We've been trying to be here for Watts, talk to a million doctors, sign papers, get a crash course on medical jargon/leukemia/infections, pump every 2 hours to salvage supply, and attempt to process and wrap our heads around all that has happened in the last 6 days. All while trying to somewhat normalize everything for Piper. Sweet, strong Piper. The past few days have been incredibly rough on her tender heart.
--------
6 days. Last Thursday, we grilled out on the back deck and laughed at the kids' funny faces and antics, a week later we are here. Last Friday morning, we all went on a 3 mile run and got bagels at Breuggers, this Friday we will be at Brenner. How quickly life changes.
Taped above Watty's head are six pictures of him smiling and laughing with his papa, sister, and me. Even in only 6 days, it's hard at times to remember what life was like when everything was normal, when he was "healthy."
--------
His blessings cover us. Throughout the day we glimpse them, even in the midst of chaos. I've started jotting them down, in true Ann Voscamp style, a chronicle of beauty through all of this.
That we have a diagnosis and treatment can start.
The humor (and confidence) of the ambulance respiratory transport team that took Watts and me from Moses Cone to Brenner.
The kindness and awesomeness of Dr Sam Ajizian.
Ronald McDonald House.
Love and support of everyone.
Supernatural strength for Michael and me to function under all of these circumstances.
And the list goes on and on.
---------
Throughout the past six days, the words, "He makes all things new in His time" have been pounding through my head... while holding my thrashing fever-stricken son in the ER, while jogging behind the stretcher towards the ambulance to head towards Brenner, while sitting in the little room with the doctors receiving the worst news of my life. He's been in every moment through all of this...dark as it might seem, I feel cupped in His hand.
Thursday, May 30, 2013
Diagnosis
Today we received an official diagnosis for Watts: Infantile Acute Lymphoblastic Leukemia. When we have a little more time and energy, we'll write up a detailed post with some of the back-story (UPDATE: you can read about it HERE). For now, we're exhausted and sad, but also glad to know what's happening and have a bit clearer picture of treatment. Watts has been sedated since we arrived at Brenner and he's peacefully sleeping and not feeling any of the tests, etc. that have been done. It's heart-wrenching to watch and be able to do absolutely nothing. That's probably been the hardest part. We've been reading Psalm 77 a lot and feel encouraged by the honest lament there– we can relate to those feelings– and also the reminder that God is powerful, mysterious, and faithful in his love toward us. Please pray that we would have faith to lean into those realities.
PSALM 77
1 I cry aloud to God,
aloud to God, and he will hear me.
2 In the day of my trouble I seek the Lord;
in the night my hand is stretched out without wearying;
my soul refuses to be comforted.
3 When I remember God, I moan;
when I meditate, my spirit faints. Selah
PSALM 77
1 I cry aloud to God,
aloud to God, and he will hear me.
2 In the day of my trouble I seek the Lord;
in the night my hand is stretched out without wearying;
my soul refuses to be comforted.
3 When I remember God, I moan;
when I meditate, my spirit faints. Selah
4 You hold my eyelids open;
I am so troubled that I cannot speak.
5 I consider the days of old,
the years long ago.
6 I said, “Let me remember my song in the night;
let me meditate in my heart.”
Then my spirit made a diligent search:
7 “Will the Lord spurn forever,
and never again be favorable?
8 Has his steadfast love forever ceased?
Are his promises at an end for all time?
9 Has God forgotten to be gracious?
Has he in anger shut up his compassion?” Selah
I am so troubled that I cannot speak.
5 I consider the days of old,
the years long ago.
6 I said, “Let me remember my song in the night;
let me meditate in my heart.”
Then my spirit made a diligent search:
7 “Will the Lord spurn forever,
and never again be favorable?
8 Has his steadfast love forever ceased?
Are his promises at an end for all time?
9 Has God forgotten to be gracious?
Has he in anger shut up his compassion?” Selah
10 Then I said, “I will appeal to this,
to the years of the right hand of the Most High.”
to the years of the right hand of the Most High.”
11 I will remember the deeds of the Lord;
yes, I will remember your wonders of old.
12 I will ponder all your work,
and meditate on your mighty deeds.
13 Your way, O God, is holy.
What god is great like our God?
14 You are the God who works wonders;
you have made known your might among the peoples.
15 You with your arm redeemed your people,
the children of Jacob and Joseph. Selah
yes, I will remember your wonders of old.
12 I will ponder all your work,
and meditate on your mighty deeds.
13 Your way, O God, is holy.
What god is great like our God?
14 You are the God who works wonders;
you have made known your might among the peoples.
15 You with your arm redeemed your people,
the children of Jacob and Joseph. Selah
16 When the waters saw you, O God,
when the waters saw you, they were afraid;
indeed, the deep trembled.
17 The clouds poured out water;
the skies gave forth thunder;
your arrows flashed on every side.
18 The crash of your thunder was in the whirlwind;
your lightnings lighted up the world;
the earth trembled and shook.
19 Your way was through the sea,
your path through the great waters;
yet your footprints were unseen.
20 You led your people like a flock
by the hand of Moses and Aaron.
when the waters saw you, they were afraid;
indeed, the deep trembled.
17 The clouds poured out water;
the skies gave forth thunder;
your arrows flashed on every side.
18 The crash of your thunder was in the whirlwind;
your lightnings lighted up the world;
the earth trembled and shook.
19 Your way was through the sea,
your path through the great waters;
yet your footprints were unseen.
20 You led your people like a flock
by the hand of Moses and Aaron.
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