I opened up my Bible this morning to read my Proverbs of the day when I looked at what was written in the margin. My diaphragm tightened as my breath quickened.
Today’s the day. The 13th of June.
A day that changed our lives forever.
June 13th , 1997. Bekah diagnosed with CF.
That day, Mark and I took our 9 month old, little tiny bald headed, only child Rebekah, down to St. Christopher’s for a CF sweat test. Later that day we had an appt. with a pediatric internist who was going to look through other issues that could be causing Bekah’s lack of weight gain.
Bekah had the sweat test done. It was the 3rd floor. The walls were cream, the trim was green and the couches were blue.
While we were waiting for her little forearms to sweat, I went and stood out looking over the atrium of this sad, sad place. No one wants to be found in a Children’s Hospital.
Mark and I had been praying about whether to go overseas for mission work. I had told God Almighty I would go anywhere in the world to love on other humans and share His love but this place.
Absolutely not.
Too sad.
Too unthinkable.
Things happen here that no one wants to explain or come to terms with. It’s the center of everyone’s humanity, and it’s a place that exposes our absolute lack of control.
I told God Almighty that I couldn’t be a part of this club and certainly I wouldn’t because we were going to go do BIG things for God across the seas.
Mark and I went to Independence Mall and saw the Liberty Bell. We had time to kill and why not make an adventure out of a difficulty. Mark just remembers we were fighting all day. I don’t remember that part but he is married to a Karen and when Karen’s get stressed, it comes out in extra controlling managerial ways that probably involved telling him where to drive, where to park and where to find the building that housed the signing of one of the greatest documents of all history.
I took Mark and Bekah’s picture that day in front of Independence Hall. No one passing by us had any idea the weight of the what ifs we were carrying in our hearts but desperately trying to ignore.
We made it back to the hospital to have the 3PM appt. with the internist doctor.
It was the first floor.
Far enough away from the 3rd floor, the CF Center, the floor I had vowed I would never be returning to.
The doctor on the first floor just looked at dairy allergies, food intolerances , maybe she had a minor digestive issue that she wasn’t absorbing things. Or maybe she was just going to be little. Mark’s cousins didn’t weigh much more than Bekah at her age. Yes that’s what it was …..just genetics.
The doctor came in and was incredibly pleasant. She was personable and had a wonderful bedside manner. As she was talking to us, there was a knock at the door.
She was annoyed.
She clearly didn’t like to be disturbed when meeting new patients. She was building a rapport with us. She wanted us to know we had her undivided attention.
I remember thinking she was a little brash with the secretary when she said please don’t disturb me.
She shut the door.
The knock came again.
The doctor who was much more annoyed at this point repeated her words with even more authority that under no circumstances should she be getting disturbed. She said to her secretary,
“I’m with a patient!”
Then the words came.
“I’m so sorry, but I have a message about this patient that is emergent.”
That’s when I knew.
That’s when the bottom fell out.
Thats when the tears started to brim and Mark just looked at me across the room with the same look of stun.
That’s when the room felt like it was closing in.
The doctor looked at us and apologized. She went into the hall and left our little family alone in that room, alone with all the what if’s, alone with this baby we loved more than life itself and we couldn’t imagine not having her.
I also remember that amidst the other worldly feeling and the sensation of time standing still, I also knew that I knew that we were not alone in that room.
God was with us.
A God that saw that day before Bekah was even an idea in our minds.
A God that heard my desperate prayers a couple of weeks before when I placed Bekah on our bed, overwhelmed by the anxiety I had for her. I surrendered her to God Almighty that morning and told Him with open and raised arms, the most important thing to me was that Bekah would grow up to love God with all her heart, all her soul and all her mind. I knew if she had faith, she could face anything. I entrusted my sickly little lethargic 12 pound, 9 month old to a God that I had learned was faithful.
God also was there to hear my prayers of refusal to walk a road that seemed too terrifying and overwhelming . He lovingly listened while I ranted about the sick kid club I stubbornly said that I would never have membership in.
Yet in that room, in those moments of realizing how small I was….
I felt how big my God was.
From those early moments, though terrifying and emotional, I knew I was being held. I knew there was a plan.
Oh there were tears that were sad, tears that were scared, tears that were angry.
I still dislike the Schukyll Expressway for the very memory of that drive in our turquoise Contour, stuck in traffic, with gut wrenching sobs escaping my lips while Bekah slept soundly in the back seat oblivious to the news we had been told that our precious girl indeed had Cystic Fibrosis.
By the grace of God Mark got us home. He didn’t take us to the home that we were living in. I asked him to take us to the property on Tower Rd. in Quakertown that we were looking to buy.
A purchase that seemed like it might be too out of reach for us, but I knew it wasn’t impossible with God.
Mark drove to the house that was vacant. I got out of the car and ran back to the trail beside the house with wet tears trickling down my cheeks. I looked to the tops of the trees with their new green leaves on them and begged God to let us live here. To make a way for us to raise this girl where she could experience nature. A place she could explore, to climb trees, to build forts, to have campfires and camp outs. I asked that if this were the road being asked of us to walk, that God would let our girl live out the number of her days on that land.
Most of you that know the rest of the story, know that God did exactly that and far beyond what we could think or even imagine.
The very trail I ran out to that day was the same trail Bekah would run to countless times when she needed to get face to face with her Maker and cry out to the Creator of the Universe displayed in the nature surrounding our home. They were the same trails Bekah would ride her miracle Make a Wish pony on, while telling that horse all the secrets of her soul.
Rebekah had no idea that day 25 years ago the trajectory that her life had just taken. She simply kept looking to us for her regular needs. She trusted us as her Mom and Dad to provide her milk, her food, her hugs and kisses, her safety.
She had no fear of tomorrow for she didn’t have a way to comprehend it.
All these years later I think I now understand another layer of comprehension to the verse that says
Have Faith….
LIKE. A. CHILD.
The next day, Friday June 14th, we drove back into that city. We drove back to that hospital, we went up to the third floor and entered the Cystic Fibrosis Center as parents in the new club.
We knew, albeit with fear and trepidation, this was the mission field God was asking of us. He was going to teach us how to walk with the broken, how to walk with those who suffer, how to show up when others world’s fall apart.
We chose to trust His plan.
That arguing between Mark and I.
Ya, that went to the wayside whatever it was. Mark just remembers thinking how ridiculous it was in light of the things that had unfolded. Without saying it, we just knew we needed to be better humans, we needed to be selfless to one another and to our girl so we could give her the best life possible not knowing how many years that would be.
25 years ago.
25 years.
When Bekah was diagnosed, the age of survival wasn’t much higher than 25 years if we were ‘lucky!’
And oh the miracles that God has done.
I’m sitting in Bekah’s new house, 7 minutes from Pop-Pops and Nans, with her miracle little baby napping upstairs. He’s a couple of months younger than Bekah was on this day 25 years ago. Bekah was 12 pounds. He’s almost 20. He’s got all the chub Bekah’s doctors would have loved for her to have all those years ago.
As all these memories flood my mind Spotify is playing Rend Collectives
EVERY GIANT WILL FALL.
“I can see the Promised Land
Though there's pain within the plan
There is victory in the end
Your love is my battle cry
When my fear's like Jericho
Build their walls around my soul
When my heart is overthrown
Your love is my battle cry
The anthem for all my life
Every giant will fall, the mountains will move
Every chain of the past, You've broken in two
Over fear, over lies, we're singing the truth
That nothing is impossible with You
With You
There is hope within the fight
In the wars that rage inside
Though the shadows steal the light
Your love is my battle cry
The anthem for all my life
Every giant will fall, the mountains will move
Every chain of the past, You've broken in two
Over fear, over lies, we're singing the truth
That nothing is impossible
No greater name, no higher name
No stronger name than Jesus
You overcame, broke every chain.
Every giant will fall, the mountains will move
Every chain of the past, You've broken in two
Over fear, over lies, we're singing the truth
That nothing is impossible
Oh how God has slain giants.
Oh how He has moved mountains.
He has broken chains of fear and doubt. He’s blown away expectations of status quo and life expectancy and He’s even brought new life when people thought it would be impossible.
Most importantly.
He’s changed each and every one of us.
For whoever needs to read this today.
For whoever is trapped in that small room perhaps hearing news they never imagined. Whether you are in a hospital, a doctors office or maybe its the prison of your own mind or your own making.
Our God IS a miracle God.
He doesn’t always take away the broken, but often He uses the broken to teach us how small we are and how big He is.
God promises to use the pain, to use the suffering, the fears, the unbelief, all of it…..
He’s making a Masterpiece.
There is a caveat.
He asks for a heart of surrender. He asks for hands to uncurl to the thing they are holding so tightly to.
He asks you to lift it up, to let it go.
TRUST.
Weary soul can I encourage you to Surrender.
TRUST His heart.
Read His word.
Use Worship as a weapon.
Pray.
One of His favorite prayers to hear is …
Lord Help My Unbelief.
How do I know?
I’ve prayed it a million times.
God is faithful.
God has a plan.
Trust His heart…..
AND look for His fingerprints along the way. One day 25 years from now it will take your breath away.
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