jeffrey-he’s my son

Editor-  I sat in the kitchen one morning, glued to the computer watching a video that I knew I needed to share on the iamviable fan page.  It was a video by singer Mark Schultz in which he shared the story behind the song, “What it Means to be Loved.”  The video moved me to tears.  Mark’s wife is a nurse and she had come home from work one day and told him a story about a couple at work.  The Lord then dropped a song into his lap, it was about a doctor telling a brand new pregnant mom the news, that her baby won’t live very long, asking her what she wanted to do, and she responds, “I want to show her what it means to be loved.”  Mark sang a piece of the beautiful song and then talked more about his own wife.  He shared how she wanted to adopt children, not any children but children who had only been given a short time to live because she wanted them to know that they are well loved before they go on to heaven.  Mark, with tears in his eyes says, “That’s the kind of wife I’m married to.”

Oh wow, the genuine love that this man had for his wife, a woman with such a caring and compassionate heart, and his own tenderness and sensitivity to the Lord’s leading in his song writing, it was a video I had to share!  I posted the link on the iamviable fan page.  See the video, What It Means to be Loved, The Story Behind the Song: http://www.markschultzstore.com/comealive/

A few minutes later, my husband walked into the kitchen, “I have a story to tell you and you’re going to like this one.”  I looked up at him, his eyes a bit moist, I was anxious to hear.  Lately, I’ve been reconnecting with old friends from my high school years on facebook.  My husband, Greg had decided to go on a quest of his own.

“Remember the pictures of Jeff and his family that I showed you?”  Greg asked.  I nodded my head, yes.  Just the night before, he had shown me pictures of an old buddy from his high school youth group.  We had looked at Jeff’s family together and wondered if he had a son with special needs.  There were a couple of pictures in which it looked like they may have been helping to support their son as they stood by his side.  But we really weren’t sure, he really looked like a very typical teenager.

“You know that video you just put up on the fan page?”  He asked me.

“Yes.” I said, waiting to hear more.

“Well, Jeff had just joined the fan page earlier this morning, so he got your link on his own facebook page and he clicked on it.  He’s going to send me a story about his son because three years ago, his wife took him to a Mark Shultz’ concert and Mark dedicated a song to Jeff called, “He’s My Son.”  He’s going to share his story about his son with us!”

I sat there stunned.  Coincidence?  I don’t think so.

Facebook is doing an amazing thing, reconnecting the pieces of our lives through people that we knew in ages past with our lives now, here in the present.  We are reliving our old journeys and sharing the new.  I just love it when God uses our modern day technologies to deeply move our hearts in a miraculous way.  This story most definitely has been shared with us in such a way.        – Editor

jeffrey-he’s my son

Story submitted by:

before-1st-bleed-97Jeff, the father of my hero – Jeffrey Thomas

As I mentioned after scanning your site, Greg, I should probably tell you about my son, Jeffrey.

It was around 7:30 Monday morning on July 21, 1997 when my 2 1/2 yr. old beautiful son, Jeffrey came running into our bedroom to greet us as he would each morning.  But his smile was a little crooked and he seemed disturbed about something. The right side of his mouth didn’t go up as usual, so I picked him up and held him.  While we were walking into the family room, his right arm went limp.  I lifted it and it dropped with no resistance, time and again.  I showed, my wife Herma, and she made plans to take him immediately to see our wonderful pediatrician while I went to work to get payroll finished -payday was the 20th & I had 30 people who expected a paycheck that day.

Herma  called me about an hour later very distraught, the Dr. had suggested a neurological problem, symptoms possibly caused by meningitis.  She was in tears driving Jeffrey to Tucson Medical Center.   I soon followed and met them there with doctors and nurses scurrying about, promising us tests would be done soon.  About three hours later, the MRI results came back and Jeffrey went straight to Pediatric ICU.

I of course, was clueless.  Jeffrey was totally normal, had great hand/eye skills, everything about
him screamed fabulous toddler.  “Tell me doctor, why he is in ICU?”

” Well, you see, he has what’s called a cavernous angioma (a tumor composed mainly of lymph and blood vessels) in his brain stem and it has bled.  Since it is located in the place that controls all his central functions, like breathing, we thought it necessary to monitor him here.”

“You mean it’s life threatening?” I asked incredulously.

” Yes.”

My firstborn namesake could no longer smile, couldn’t talk, couldn’t use his right side, and could no longer walk.  He had multiple monitors attached to his body and lay there while I held his hand and sang the theme song to the “Courtship of Eddie’s Father” to him.  It was our song,  he would always join in at the part, “talking son to son, cuz he’s my best friend, yada na da da da da yada…”  Only now, he couldn’t join in.

After a 45 minute phone, “warfare prayer strategy” with my spiritual mentor, fasting was suggested.  I tried that once in college, lasting about 3 hours.  You see, I could lose 5 pounds by skipping a meal, my metabolism was a little like the blood eating flower in, The Little Shop of Horrors- “FEED ME!”

But that moment began a fast I will never forget.

As Jeffrey stabilized, he remained in ICU for a full 14 days.  Doctor after doctor kept asking when we were going to have “the surgery.”

What surgery? Brain surgery? Have you done this particular one before?  No?  How about you?  No?  But you’ve all been trained by the same guy up in Phoenix, some world famous genius of a surgeon?  I think we’ll pass, thank you.

The fast went on.   Jeffrey finally smiled on about day 7 while we were watching some Disney movie from his bed.  Either Herma was with Jeffrey while I went to my “parent room” and prayed, or I stayed with him, sleeping by his side in one of those recliner chairs (not too uncomfortable, nurse Mary took good care of me and Jeffrey and brought me clear liquids while on my fast).  It was clear from the beginning to all of the nurses that “Visiting Hours” didn’t really apply to us.

Near the end of our stay, one of the specialized neurologists asked if we were sure we wanted to “take on the task” of bringing Jeffrey home with us.  There were places where he could stay with specialized care, therapy, nurses, etc.  Were we sure we wanted our boy home with us instead of some facility for the infirmed?  We couldn’t even imagine that alternative.

Jeffrey came home after 14 days in the hospital and still couldn’t walk or use his right arm, but 13 days after being home he took his first unassisted steps and 3 months later, only the neurologist
could detect any slight deficiency at all.  Praise God, we claimed total healing and the therapy began!

A consult 2 weeks later with the “famous” doctor in Phoenix (the guy who had trained all these other doctors in Tucson) resulted in him explaining that it was possible to do the surgery now since the swelling and bleeding had subsided but he may do as much damage in surgery as waiting for another bled someday.  He was fine with waiting, and so were we but I knew that if it happened again, we would be seeing him.  You see, Dr. Spetzler can hardly be described in human terms.  The closest I can get is a character in an Og Mandino book named,Simon Potter.  The love that exuded from this man in his firm yet gentle handshake, his warm smile and reassuring eyes, gave us no question that God’s gift of surgical skill was given to the right guy.

Sunday, July 19, 1998, 364 days after Jeffrey’s first bleed, Herma and I were in Denver at a conference and during the worship service,  the baby-sitter back in Tucson called to say that Jeffrey wouldn’t wake up.  He had cried all night during a thunderstorm.  Finally, settling down well after midnight but now at almost noon, she had called an ambulance.  Almost no breathing, Jeffrey was non-responsive.

Apparently this was the second bleed, but this time catastrophic.  Life became surreal as we somehow made it to Phoenix within hours and found Jeffrey in St. Joseph’s/Barrows Neurological Pediatric ICU in a coma, tubes and monitors everywhere.  The world had stopped again and nothing else existed except my motionless little three and a half year old son, who had run up the driveway for one last goodbye hug two days earlier as we painfully drove to the airport.

I remembered him crying “daddy” in a strange voice the night before when we had called to say goodnight from Denver.  It didn’t occur to me at the time, but now it came rushing back, he must have felt it then, Saturday night.  Now, it was Sunday night, and after Jeffery had taken a heli-vac ride from TMC in Tucson to Phoenix with his aunt, Dr.Spetzler had been called to duty.

A few days after the surgery, another “renown” physician came by Jeffrey’s bedside with Dr. Spetzler behind him, along with a team of physicians (they told Herma that this almost never happens).  This highly respected doctor  began his review of Jeffrey in my presence and as he addressed me, something caught my full attention, he was trying to help me understand what to expect in the future and said about Jeffrey, “If he wakes up…”

I stopped him immediately and said, “You mean, “WHEN he wakes up!”

Being taken aback, not accustomed to being interrupted, he explained his duty was to let me know the possibilities…

I stopped him again and told him that while he was the doctor, I was the dad and that around Jeffrey, I would appreciate it if we only said, “WHEN he wakes up”

I saw a  knowing smile on Dr. Spetzler’s face from behind this other great man.  The addressing doctor had a look of sad, consoling acceptance on his face, but agreed, and continued on.  That little
exchange apparently stirred quite a bit of discussion amongst the staff afterwards.

On the morning of the ninth day around 10:20 a.m., I was at Jeffrey’s side after many “best friend songs” when he opened his eyes for the first time for about 20 minutes. He then fell back into a coma for
another two days.

after-2nd-bleed-99Grimaces and pain we prayed would stop, struggles to get off the trach tube that now sustained his life, a new, distorted look on that perfect face,  we moved him back to Tucson, back to TMC where he finished the rest of his forty nine days in a hospital ICU unit.

Again, we were asked, “Are you sure you want to take on this task of full time care?  There are places that we could leave him.”

“Nope, not this one.  He’s our son, and he’s coming home with us.”

Marathon therapy began.  Herma has become so good, she could be an honorary nurse/therapist.  She has amazed and astounded every provider who has ever witnessed her dedication, energy, inventiveness, strength, faith, conviction and passion.

Except for Jeffrey’s wheelchair, he hardly looks as though he has a disability.  His mom has turned our living room into a workout room complete with treadmill and litegait support system, total gym (he’s got guns!), an elliptical trainer, multiple training balls, saddles, etc. etc. etc.

Jeffrey has been in Therapeutic Horseback Riding for years and loves it.  There is scarce enough praise and credit that can be said about Herma. She brushes it off, but no one gets the kind of care that Jeffrey gets and that’s according to therapists who see hundreds of kids!  She is even in the process of inventing and modifying equipment to  help other kids with mobility issues.

Should we have resigned ourselves and left Jeffrey’s care in the hands of some “professionals” so we could live a “normal” life with our other two sons?  How could Jeffrey be “viable” with so many physical
challenges?

spring-2009It’s been 11 years since his surgery, he still struggles to talk so even we can understand him, his right arm works good, but he can’t functionally use his left hand or arm, his left leg is about one and a half inches shorter due to growth and neurological issues, he’s had over 6 surgeries including reconstruction on both feet, and his eyes tend to go to the left.

After many years of home visit schooling, he just began going to high school by himself.   He has his own augmentative speech device with Internet, he’s had an electric wheelchair for mobility freedom for 2 years, this summer he went down the longest static zip-line in North America up at Heavenly Valley, he has parasailed, snorkeled in Maui and Molokini crater with a shark 50 feet below him, he’s adaptive-skied down a snow covered mountain in Arizona, he beats me occasionally in Wii, using one hand (I still use two), no one beats him in concentration card game, he usually wins in gin, has a great sense of humor, has a crush on a very cute 9th grader who he IMs with regularly (when he’s on the computer IMing, he’s just a regular kid) and he loves the Lord.

Yeah, Jeffrey is viable, more so than many people I’ve met with “normal” abilities!  He has the greatest spirit, peaceful nature, contagious laugh, disarming eyes, keen intellect and the most wonderful sense of humor of any 14 year old kid I’ve ever known.

When Mark Shultz came out with the song, “He’s my Son,” (see lyrics below) it blew me away.  I immediately brought it home to my wife and it has evoked many a tear and prayers.

On my fiftieth birthday, my wife surprised me with tickets to a Mark Shultz concert here in Tucson.  What I didn’t know was that she had emailed him weeks before telling him Jeffrey’s story.  In between songs, he mentioned letters that he has gotten.  Then out of his shirt, he pulled out, “this email about a boy and his dad who is a praying man”…. and dedicates, “He’s my Son” to Jeffrey and me.  Standing applause, few dry eyes.  What a night to remember.

So, when I saw the Mark Shultz link on your website and learned it had just been put there the day I first viewed iamviable.com, I agreed with Greg – it must be a God thing!

Praise Him who is able to do exceedingly above and beyond what we can conceive!!!  Jeffrey will walk and talk, sing and dance, run and play, and praise the Lord along with us again someday,
but for now, I can only imagine.

ski-w-family-2007

He’s My Son

By Mark Shultz

I’m down on my knees again tonight
I’m hoping this prayer will turn out right
See there is a boy that needs Your help
I’ve done all that I can do myself
His mother is tired
I’m sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he’s not just anyone
He’s my son

Sometimes late at night I watch him sleep
I dream of the boy he’d like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He’s so tired and he’s scared
Let him know that You’re there

CHORUS

Can You hear me?
Can You see him?
Please don’t leave him
He’s my son

About editor

Kara Ferris is the Executive Director and editor of iamviable.org. Wife. Mom of 3. Lover of people. Connoisseur of espresso. Master of Crazy Hair. Heart that beats for Jesus. Passion for those with disabilities, bringing honor, value and raising awareness of God’s intent and purposes for EVERY life. Blessed beyond imagination.

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