Phoebe’s Story

Site created on December 15, 2019


Phoebe,  our middle daughter, walked into Children's Hospital in Aurora, CO on December 11, 2019.  This was a planned surgery to repair her heart valves as a result of her Marfan Syndrome.  As we walked in, she said "Mom, all I want to do is glorify God through this situation."  Well, she is most certainly doing so.  A few months ago, Aug 1st, our youngest daughter Eliza had the same surgery.  A few days before Eliza's surgery we were listening to a song that said "God can take this away with a snap of His finger."  I stopped the song, asked the girls if they believe God can fix it and they both said "Yes". I then said, "That means God is CHOOSING to allow you to suffer through this surgery. How does that make you feel?"  Phoebe immediately said, "Great Mom because I know God has a plan."  God does have a plan and you are all testimony and part of His plan.

Some have nick named her MG for “Miracle Girl”. Phoebe, has miraculously beat the odds since her open heart surgery on December 11th.  This is a place to follow the Jonas family’s journey and offer support and words of encouragement.  We can now also call her The Bionic Woman. She has metal rods in her back from a spinal fusion 2.5 years ago and now she will have 1  or 2 metal devices inserted to make her heart work.  The months prior to her planned surgery she repeatedly said she is excited to be "double-zipped" meaning a huge scar on her back and now one on the front as well.  She was teasing with her two sisters stating that she'll be able to say "I've been impaled" a quote from Frozen1 meaning she's been opened clear through.  She has such a love for life, a very odd sense of humor due to her surgeries, and a child-like faith in all she encounters.  Nothing worries her and she is always trying to get people to laugh.  Her Dad says she never sees anything bad coming because she's too busy smelling the daisies. God is not done with her and I am confident we'll keep her for many years to come.  Thank you for walking this journey with us.

Newest Update

Journal entry by Titia Jonas

Yesterday was Resurrection Sunday or as some call it, Easter Sunday.  It is the day we celebrate Jesus rising from the dead.  The grave could not keep Him.  Yesterday was also Phoebe's 90 day mark, 3 months. In a sense, it was Phoebe's 3 month mark from her resurrection.  Just as Jesus had to die in order for us to live, someone had to die in order for Phoebe to live.  Almost everyday the last 90 days, I have thought about that sacrifice . . .

I've been studying the timeline of events leading up to Christ's resurrection.  The Thursday before Easter/Resurrection is often referred to as Maundy Thursday.  Maundy is derived from the Latin word meaning 'command'.  Maundy Thursday is the day Jesus celebrated His last Passover meal with His disciples.  The Passover meal was to remind the Israelites of the salvation/freedom/liberation from Egypt.  The Israelites were slaves to the Egyptians for several centuries.  God called Moses to lead the Israelites to freedom but Pharaoh was hard headed and wouldn't let them go.  God led Moses through the 10 plagues resulting in the final plague, death of all the firstborn sons throughout the land.  God commanded the Israelites to sacrifice a lamb and put the blood on the doorposts of their homes.  The angel of death came in and killed all the firstborn sons except those who were behind the protection of the blood of the lamb - those firstborn sons were spared - the angel of death 'passed over' those houses.

With this virus, we too are living through a modern day 'plague'.  As the Egyptians mourned the death of their firstborn sons, we too are mourning the loss of loved ones world wide.  The world has been united this last month in suffering: isolation, fear, sickness, death, unknowns, despair, depression . . . As Christians, we have hope: hope there is a purpose in the suffering; hope knowing there is everlasting life with Christ after death; hope knowing life is so much greater than this plague we are living through.

December/January was a time of extreme fear, sickness, unknowns, and at times despair.  As we watched Phoebe fighting for her life, our only hope was knowing there is hope in the suffering; there is purpose in the heartache.  Having faith that God was leading us down this path of unknowns because it was in His plan.  It didn't surprise Him.  He is/was able to use all the pain to glorify Him.

I see on social media that many people are feeling hopelessness, wishing this plague would never have come.  Viktor Frankl, Holocaust survivor, said ". . . everything can be taken from a man but one thing: the last of the human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way."  As the world seems to be falling apart around us, we get to choose our own attitude.  We get to choose to be bitter and feel sorry for ourselves. We get to choose to always look for the good in every situation no matter how small it may seem. We get to choose to push people out of the way for the last toilet paper on the shelf or to share with our neighbors the toilet paper we do have. We get to choose to feel sorry for ourselves because 'I lost my job' or 'I won't get to have a graduation ceremony' or 'I can't see my friends/co-workers and I'm going insane'. We get to choose to love our neighbors, those God brings into our circle of influence.  Regardless of our choice, remember it IS a choice.

The Jonas crew chooses joy. We choose hope in the midst of loss.  We've lost 2/3 of James' income but we choose to be thankful for the 1/3 we still have. We choose to spend our time serving our neighbors.  We choose to use this extra time to do home projects together we've been wanting to do for years.  We choose to learn to make homemade apple pie and cream puffs. We choose hope. We choose to praise God for health. Phoebe is doing absolutely amazing.  She is able to get back into school work which has been slow coming because of the immense brain fatigue caused by being on the heart/lung pump so many times. Her physical stamina is steadily increasing. The last two weekends she has been outside helping with Spring cleaning chores around the farm. There are ZERO signs of rejection, praise God!!!  We choose to praise God in the trenches as well as on the mountain top.  We choose to praise God for Phoebe's health rather than feel sorry for ourselves that she is on immunosuppressors (mild chemo meds) the rest of her life.  We choose to focus on the good . . .

This is probably my last Caring Bridge post. We made it to three months post transplant.  There were several days we thought we would be the organ donor rather than the organ recipient. I thank God for each one of you because of your encouraging words, visits, prayers, gifts, financial support and the constant reminder we were never alone.  Words truly cannot express how vital your role was in the success of our journey.  Thank you for walking it with us.  We thank God that the Jonas 5 all came out of this journey closer to one another and to God.  So many times tragedies such as ours makes us push God away, blaming Him for the suffering; blaming Him for not fixing it the way we want.  We recognize that each of us Jonas 5 CHOSE to draw closer to God and praise God in the midst of suffering.  Don't wish away your sufferings and trials whatever form they may be.  Embrace the pain, walk through the suffering remembering you are never alone, and come out on the other side a better, more Christ-like, person.  May God bless you all for being a blessing to us.

On a lighter note, this is a poem I've seen circulating on social media and thought you might enjoy it as well:

How the Virus Stole Easter

By Kristi Bothur - With a nod to Dr. Seuss

 

Twas late in ‘19 when the virus began

Bringing chaos and fear to all people, each land.

 

People were sick, hospitals full,

Doctors overwhelmed, no one in school.

 

As winter gave way to the promise of spring,

The virus raged on, touching peasant and king.

 

People hid in their homes from the enemy unseen.

They YouTubed and Zoomed, social-distanced, and cleaned.

 

April approached and churches were closed.

“There won’t be an Easter,” the world supposed.

 

“There won’t be church services, and egg hunts are out.

No reason for new dresses when we can’t go about.”

 

Holy Week started, as bleak as the rest.

The world was focused on masks and on tests.

 

“Easter can’t happen this year,” it proclaimed.

“Online and at home, it just won’t be the same.”

 

Maundy Thursday, Good Friday, the days came and went.

The virus pressed on; it just would not relent.

 

The world woke Sunday and nothing had changed.

The virus still menaced, the people, estranged.

 

“Pooh pooh to the saints,” the world was grumbling.

“They’re finding out now that no Easter is coming.

 

“They’re just waking up! We know just what they’ll do!

Their mouths will hang open a minute or two,

And then all the saints will all cry boo-hoo.

 

“That noise,” said the world, “will be something to hear.”

So it paused and the world put a hand to its ear.

 

And it did hear a sound coming through all the skies.

It started down low, then it started to rise.

 

But the sound wasn’t depressed.

Why, this sound was triumphant!

It couldn’t be so!

But it grew with abundance!

 

The world stared around, popping its eyes.

Then it shook! What it saw was a shocking surprise!

 

Every saint in every nation, the tall and the small,

Was celebrating Jesus in spite of it all!

 

It hadn’t stopped Easter from coming! It came!

Somehow or other, it came just the same!

 

And the world with its life quite stuck in quarantine

Stood puzzling and puzzling.

“Just how can it be?”

 

“It came without bonnets, it came without bunnies,

It came without egg hunts, cantatas, or money.”

 

Then the world thought of something it hadn’t before.

“Maybe Easter,” it thought, “doesn’t come from a store.

Maybe Easter, perhaps, means a little bit more.”

 

And what happened then?

Well....the story’s not done.

What will YOU do?

Will you share with that one

Or two or more people needing hope in this night?

Will you share the source of your life in this fight?

 

The churches are empty - but so is the tomb,

And Jesus is victor over death, doom, and gloom.

 

So this year at Easter, let this be our prayer,

As the virus still rages all around, everywhere.

 

May the world see hope when it looks at God’s people.

May the world see the church is not a building or steeple.

May the world find Faith in Jesus’ death and resurrection,

May the world find Joy in a time of dejection.

May 2020 be known as the year of survival,

But not only that - Let it start a revival.


   
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