I have had a really hard time getting this entry started.
I have desperately wanted to get my words written down
and ready to be shared.
But, even after this journey hit the climax of anticipation
and we finally learned results...
I have continued to be a bundle or nerves
and have found it difficult to return to the normal, daily life.
Going to our local Food Pride grocery store this morning:
I got teary eyed. From the familiar, the comfortable, the routine.
(They served hot apple cider and cookies. Just 'cause.
Who else wouldn't become emotional because of holiday treats?!
Get a grip!)
Seeing beloved friend's faces:
Makes me want to run up for a hug and maybe cry again?
Resenting the normal tasks looming in front of me:
I want to curl up under that blanket yet this week.
Yet shouldn't I be rejoicing?
I bet others would be "over" this by now...
So, you know what?
I'm just trying to give it time.
Give myself time.
Here is the story of our recent
Rainbow House stay & Omaha Children's Hospital time...
Our eye specialist's office at Omaha Children's did an nice job
of being in contact and taking care of each of the details for us:
-Setting up Luke's MRI brain scan.
-Coordinating our follow-up appointment after our boy's recovery from anesthesia.
-Arranging our reservation for Rainbow House,
the place where patients and families of patients can stay in a comfortable setting near the hospital.
Rainbow House:
...Where you are surrounded by other individuals and families who are going through their own scary and overwhelming stories.
(Heart strings are still being pulled, and we will be burdened for all of them on their own journey's, for a long time to come.)
When you are checked in as a guest at Rainbow House,
you suddenly have joined a "club"...
the club of fellow sufferers, with precious children
who are facing some kind of scary health condition.
As parents, we shared smiles.
Yet there is a sense of being alone in each of our journeys.
It has forced me to see BEYOND myself. Outside of our own story.
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| Luke loved the rocking chairs outside the entrance doors of Rainbow House. “I LOVE wooden rocking chairs. I like rocking chairs, but I
LOVE wooden ones like this.” |
(Luke had wondered about the "rainbows" of Rainbow House...
Thankfully he wasn't too disappointed when he learned the reality.
He was just a bit puzzled!)
He was just a bit puzzled!)
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| And a very excited boy about this particular turkey flag? He asked for his picture by it. :) |
Nate and I had planned to arrive with Luke in the late afternoon,
for some special times in Omaha before his hospital-day.
All this boy asked to do?
Eat at McDonald's!
for some special times in Omaha before his hospital-day.
All this boy asked to do?
Eat at McDonald's!
2 times in 2 days.
-The simple joys of a happy meal.
-And sweet & sour sauce.
-And having both of your parent's full attention!
-Thank you, "Max Steel" (whoever you are, little toy-man)
for brightening our little boy's Omaha trip.
And our small, sweet boy?
"I wish Zachary were here.
We should go to McDonald's again tomorrow to get him a toy."
And when Nate and I reached to hold each other's hands during that evening meal, for support?
Luke quietly reached out and put his little 4 1/2 year old hand on top of ours.
Our hearts...
for brightening our little boy's Omaha trip.
And our small, sweet boy?
"I wish Zachary were here.
We should go to McDonald's again tomorrow to get him a toy."
And when Nate and I reached to hold each other's hands during that evening meal, for support?
Luke quietly reached out and put his little 4 1/2 year old hand on top of ours.
Our hearts...
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| Max Steel dude. And a happy kid with a happy meal. |
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| French-fry laughter with his daddy. |
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| We drove around the now-familiar Dodge Street in Omaha. This huge, brightly lit Christmas tree lightened each of our spirits. We may-or-may-not have driven by this tree, um, more than a few times? :) |
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| This boy was ex-ci-ted to have his own big sofa bed to sleep in at Rainbow House. |
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| Little sleeping buddy. With Franklin the Turtle and his big teddy. My heart. |
As comfortable as our lodging quarters were, it was so hard to rest.
I was wide awake from 1:30am on that Wednesday. And we had to wake up before 5:00am. So I snuggled up in the recliner of this cozy-unique, 8-sided suite room.
I was in the complete darkness, scribbling my thoughts into my little leather journal, not even seeing what I was writing until morning.
Trying to read Psalm 34 (Nate recommended)
and Psalm 103 (friend Tashia recommended).
And I was pondering the stories and the heartache
of those also staying in Rainbow House,
and for those who
had stayed in this same room before.
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| An EARRRLY morning for this boy and his parents. The night before, Luke had wanted his picture next to this enormous bear... but when you are 4 and it is "morning" but is still dark outside, it's hard to smile. ;) |
Luke was prepped and changed into his hospital garb.
Then came the waiting time in the CARES Unit...
While we waited for Luke to be put under anesthesia for the MRI.
Bustling place. Kids crying, Elmo sounds coming from toys, nurses asking questions, families together down the halls.
Bustling place. Kids crying, Elmo sounds coming from toys, nurses asking questions, families together down the halls.
 |
| While we waited in the CARES Unit at Children's Hospital: Luke thoroughly enjoyed his new "Jake & the Neverland Pirates" book and spyglass from his Grandpa and Grandma Hurd. And he carried his McDonald's happy meal box with him, too. Along with his Franklin, Puppy, big teddy bear, and his blanket. (This boy cherishes his stuffed animal and soft comforts!) (And boy, if he did not receive several more stuffed animals and toys during our day at the hospital. It's the littlest things that are the biggest things...) |
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| We gave Luke a "Luke" train from Thomas the Train. He added this to his happy meal box of treasures he accumulated while being the patient. |
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| There was a really nice playroom for the kids in the middle of the CARES (outpatient surgery) unit. Luke happily played there for almost the entire time we waited. Giggles in a child wearing a hospital gown is a GOOD THING. |
WAITING.
After Luke was taken to a different floor of the hospital,
having the MRI done,
Nate and I waited in our original room.
We read. We tried to read.
We met glances. We tried to smile.
We read each other's eyes,
recognizing the same fear and uncertainty as we waited.
The past 2 weeks of heavy worry was finally reaching the climax where we would learn answers!
Nerves. Nausea.
Clouds in front of us...
What would we find out was beyond that fog?
(I could not picture anything after leaving the hospital that day.
Truly. Even now, 2+ days later,
I am at a loss how to re-enter the normal pace of life.)
having the MRI done,
Nate and I waited in our original room.
We read. We tried to read.
We met glances. We tried to smile.
We read each other's eyes,
recognizing the same fear and uncertainty as we waited.
The past 2 weeks of heavy worry was finally reaching the climax where we would learn answers!
Nerves. Nausea.
Clouds in front of us...
What would we find out was beyond that fog?
(I could not picture anything after leaving the hospital that day.
Truly. Even now, 2+ days later,
I am at a loss how to re-enter the normal pace of life.)
Specific things helped me sit still
through those unsure, anxious moments:
"Do not be afraid" wristband.
(thank you, Lori E.)
Lyrics to "Day by Day"
(thank you, Sandy C.)
- "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." - (Karolina W. Sandell-Berg)
(thank you, Shaina R. and Kathi J.)
“So do not fear, for I am with you;
Do not be dismayed for I
am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.”
I will strengthen you and help you;
I will uphold you with my righteous right hand.”
“For I am the Lord,
your God,
who takes hold of your right hand
and says to you,
‘Do not fear; I will help you.’”
Psalm 103:13 who takes hold of your right hand
and says to you,
‘Do not fear; I will help you.’”
(thank you, Tashia U.)
"Just as a father has compassion on his children,
so the Lord has compassion on those who fear Him."
Waiting:
For news of our sweet boy. Tick-tock.
Waiting:
For permission to go back and see him, touch him, in recovery.
(Our sweet darling boy:
in his sleepiness, he opened his brown eyes wider-than-wide and reached out for me, leaned into me and settled into slumber again.)
He was so tired.
So ready to go home.
We pressed on.
He was so lethargic.
(When we finally reached the attached clinic, as we sat on the various "throne" examination chairs, he continued to sprawl out on my lap.
But!
As soon as home was mentioned,
his normal spirit and bright
eyes returned as fast as could be.)
Luke sleepily went through a few more assessments
on his eyes and optic nerves.
We found out:
1) His optic nerve measurements are still measuring similar-
"elevated" but consistent:
GOOD NEWS.
Still uncertain about the implications of his elevated numbers,
but good news for now.
2) His eyes continue to wander without his ability to control it.
Another surgery scheduled for January:
SO-SO NEWS.
Continuing to treat his condition with eye drops & glasses & eventually this 2nd surgery for him.
3) His MRI results showed normal. Nothing unusual.
No. Tumors.
No. Tumors.
(Teary eyes yet today):
GOOD, GOOD NEWS!
Good news. Good. Very good.
When our main doctor discussed the MRI results with us,
my mind couldn't quite process it.
I had tried to prepare myself for any answer:
Like mentioned in an earlier blog post:
that happy convertible ride
that happy convertible ride
or
that dark and lonely forest.
But when the good news came, my heart was still like lead.
Why couldn't I rejoice?
Why didn't I jump up and down?
Why didn't I burst into tears of joy?
I nodded my head and smiled,
but inside I felt shell-shocked and still under that anxious blanket.
What was wrong inside me?
But it was not about ME.
It was about the TRUTH.
And I was indeed thankful. We were beyond thankful.
Restored hope and restored life for our boy?
Even though my emotions were deadened,
the TRUTH was shimmering.
Life.
No tumors.
Trials still remaining.
But no tumors.
Healthy brain.
(Our boy received this happy answer.
But not all patients would.
In the midst of our inner joy and gratitude,
there still lingers that heaviness for other's.)
After we shook hands with our doctor and we eventually left,
back through that Door 1 that we had entered through...
back through that Door 1 that we had entered through...
Energy ZAPPED.
Good news or bad news, I think this would have been the result.
Adrenaline? Gone.
I had no energy to call family or friends. Or even text.
Deep in thought.
Nate drove us back at McDonald's.
I wanted to curl up in the seat of the car and fall asleep.
But Nate convinced me to come inside with them.
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| McDonald's. Take 2. :) So happy to lean into this child's sweet arm. |
And then, as I sat on the restaurant bench next to our precious little boy,
I burst inside...
I ended up crouched on the floor of a McDonald’s bathroom stall,
and I sobbed.
(Those ungraceful noises that come out of you and make you
thankful no one else is around...)
Through messy tears, singing aloud the first lines of “Be Still, My Soul.”
Saying out loud, “Life abundant. Life abundant...”
Luke can now have life
abundant,
without those concerns of ours that it may be cut short,
that it
would be *different* than the
path
we had been forced to face, that he could have been heading down.
And I couldn't stop crying.
But it was tears and RELIEF that the tears could come at last.
And the memory-making continued...
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Celebration of a big day and a brave boy and some good news.
Must be Dunkin' Donuts! |
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| It is beyond-good when you can see your child acting normal and energetic again... You want a second donut, buddy? So be it! |
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| And Nate and I bittersweetly reminisced our most recent visit to this store, with Luke in his happy pink chair. When we had just learned of the potential diagnoses and concerns about our little boy. |
We left behind that hospital setting
(for at least the next 2 months.)
And we left behind
those still-sick children, those still-struggling parents.
Those people who are continuing to stay at Rainbow House.
For days. Weeks. Months.
I recognize: We were privileged to get a taste of that world
And to have grown a deeper burden for those families.
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| The exhaustion after such a day is overwhelming. Nate drove, and Luke and I fell hard and fast to sleep. He even stopped in to Bass Pro Shop for a bit, and Luke and I could have cared or even noticed! Naptime was the best thing that could have been. |
The 3 of us returned home that evening to my mom and the other boys.
We scurried on our way to our Wednesday night church program.
(Normal life, bam!)
We were wired. We were tired.
And we received much love and care from our church family.
We were emotionally weary and physically worn.
But we were able to celebrate the good news of our precious boy's scans.
And share a brief-but-heartfelt conversation with a fellow
Omaha-Children's/Rainbow-House momma friend.
And that blessed me.
(Katelyn's Story: https://www.youtube.com/watch?v=J-e4c6ADveg)
So. About that teary-eyed me and trying to return to normal again...
Besides Food Pride this morning, a meal tonight at BozWellz
brought an unexpected, emotional moment:
My 4 guys and I met my dad for dinner. At the end of the meal, our kind and funny waitress told us that *someone* in the restaurant had paid for our meal.
She wouldn't tell us who, and she had a secretive, happy smile.
Teared up again!
Generosity has shown a new level of "love language" in our lives recently...
For all of you who have
spoken a kind word or given a compassionate smile,
shared a meal or helped watch our kiddos,
called or emailed or sent those daily verses,
said a prayer or road-tripped/stopped-by to visit...
You have filled my cup to overflowing.
And I will NEVER forget it.
Others of you (MANY of you) who have also experienced the anxiety and pain and struggle and fear and lack of control over your child's/children's health.
And you are on my heart.
Whether it is heart surgery, heart transplant, premature births,
cancer, kidney concerns, EB, skin conditions, lasting allergies, seizures, epilepsy, respiratory struggles, meningitis, hearing loss, eye disorders, mental/behavior struggles, "syndromes", lifelong health issues, an "almost-diagnosis" that still shakes you.
You are so strong and so brave and I am cheering for you.
Like I wrote at the beginning, this was a hard entry to start writing.
But this process helps me so much,
to work through the jumbled thoughts and feelings of these memories.
And I hope and PRAY it can encourage you, too.
Being real and being honest and being available for you.
The emotional raggedness will continue to smooth out...
And life will continue...
This beautiful-ugly, joyous-heartbreaking life...
Blessings on this continual journey Home,
Elizabeth
"Though this first taste is bitter,
There will be sweetness forever.
When we finally taste and see
That our God is in control.
And we'll sing holy, holy, holy is our God.
And we will finally really understand what it means,
So we'll sing holy, holy, holy is our God.
While we're waiting for that day."
(Steven Curtis Chapman, "Our God is in Control")
