December 21 - Then & Now (dated 12/21/10)

by Richard Edfeldt

After Jacob's death, Karen created this blog to record insights in her grief journey.  I would periodically write my insights on notes posted to my Facebook page.  We feel it would be best served if we combined our efforts so I am beginning the process of copying those notes to this blog.  They won't be in chronological order but I will put the original date on each one.  Here's the first one:

Six years ago today, Karen and I were awakened by a telephone call from a transplant nurse telling us that they had found a heart to replace Jacob's failing heart. It was a day that will never be forgotten by us.

I reviewed that day via Karen's and my Carepage updates on that eventful day. Here they are for you to get a sense of the day:

Posted Dec 21, 2004 6:01am

 Our Christmas wish has come true!!! We got the call that Jacob had a new heart ready at 4:00am. By 5:30, he was being prepped for the operation. They say it normally takes 8-12 hours. His surgery will be more difficult because of the scar tissue from his previous surgeries.

Once again, prayers are in order:

1. Prayer of comfort for a grieving family.

2. Prayer of thanksgiving that we have this new opportunity.

3. Prayer of wisdom and direction on behalf of the surgical team.

4. Prayer of traveling mercy for the many family members that will be coming.

5. Prayer for strength for Jacob.

6. Prayer for strength and patience for us.

Thank you, Lord. You knew endurance was waning. Now I ask anew for more as we face this new exciting but scary challenge. Great is thy faithfulness!!!

Posted Dec 21, 2004 10:31am

Okay, here we go. Jacob went into surgery around 7.00 As of now, they are preparing him to go on the heart-lung machine. The next few hours will be so critical. Please continue to pray for our wonderful doctors and nurses. This will be a very long day for them.

Please continue for the family that has lost a loved one. This is so overwhelming for us, but yet, we are so thankful. Jacob was very upbeat this morning when we saw him. He wanted to see his brother and sister before he went in, but they took him so quickly. He thought about asking the doctors to wait an hour, but we convinced him this was not a good idea. I know I am rambling but I feel like I have had 50 cups of coffee in me (and I've only had 2). We are excited, nervous, scared, thankful, etc. I am upstairs typing this now because I can't sit still and I am driving all the "patient" people crazy. As we find out more news, we'll let let you know.

Posted Dec 21, 2004 1:25pm

Praise God from Whom All Blessings Flow! The new heart is in and it is beating. The doctor is making sure all the stitches are tight and trying to control excess bleeding. He still has a long way to go and has to get off the heart-lung machine. Please continue to pray - this has been a long day for our doctors, nurses and Jacob. We do feel your prayers and support.

Posted Dec 21, 2004 4:13pm

 Then sings my soul, my Savior, God, to Thee. How Great Thou Art! How Great Thou Art!

It's my (Richard) turn to give a report but words escape me. My heart (and eyes) are overflowing with with relief, joy, excitement, gratitude, and appreciation for my God, family, and friends who have been with us this morning (in body and/or spirit).

We met with the surgeon in one of those "consultation rooms" which are usually used to break bad news. However, we met in there because of the crush of people who were in the waiting to support us and as anxious as we were to hear the report.

Dr. Kantor said it was a difficult surgery. He expressed surprise that Jacob's old heart had held out so long - that it was basically shot. I strongly believe that it was the prayers of so many that sustained him to get to this point.

Next he shared that pulmonary hypertension was also a big concern, given his impaired lung dynamics. He went on to say that his pulmonary blood pressures were staying within acceptable norms. Once again, I see God's intervention.

Obviously, the next days are critical. Pray for God's healing hand in these ways:

1. A minimum of bleeding to occur

2. Acceptance of this new heart (no rejection)

3. The pulmonary pressures to stay in reasonable norms.

4. The left lung to regain its function.

5. Jacob's body to recuperate quickly

And pray for the grieving family. We don't know details and won't know details for at least a year. We only know that they flew the new heart to the hospital by helicopter from an outside source.

It's been an exhausting, exhilarating, and spirit-filled day. Difficult days lie ahead but we are now striving toward health not trying to delay a death. Jacob will begin recuperating in the CICU and we hope to be out within the next two to three weeks.

We'll keep you posted as updates come. Thank you for walking this journey with us.

Posted Dec 21, 2004 10:31pm

 Sorry to update so soon but this exemplifies the spirit of Jacob. He is very much aware of what's going around him. Though, he can't speak because of the ventilator tube down his mouth and his hands are secured to restrict movement he is communicating his desires.

A doctor walked in with a cup of coffee in his hand. When Jacob saw it he pointed to it with his finger and stuck his tongue out. He was thirsty! The nurse said that if things go right tonight, they may take the tube out and he would be able to eat. I joked, "no hot wings yet," and Jacob snapped his finger as if to say, "oh, man!"

He has not lost his spirit! But pray that his spiritedness won't cause frustration as we can't understand a lot of his motions or he can't have all that he wants - like a coke!

What a joy he is! What a joy he gives!

Well, that was six years ago.  Today I'm sitting in my living room in my NC cabin enjoying the love of a grandson, Tucker, and a granddaughter, Libby Kate. I'm also enjoying the company of their parents, Ben & Beth, Katie, and Karen. Plus, my brother David and his wife, Bonnie, and their daughter, Brook. And a topping of three dogs.  WHAT A WONDERFUL ATMOSPHERE OF LOVE THAT IS BOUNTIFUL!!!!

That day was like a rafting trip down a raging river of stage 4 & 5 type rapids.

This day is like a lazy float ride down a meandering stream.

That day the fabric of love in our family was stretched and tested.

This day the fabric of love in our family was enhanced and enjoyed.

That day God showed His faithfulness in extending Jacob's life.

This day, the loss of Jacob tests our faith in God but His love is evidenced in the hugs and kisses of children and the conversation of family.

What a contrast of days!

A Christmas Miracle

by Richard Edfeldt

Ten years ago today, we received the call that Jacob was to be the beneficiary of a new heart. On this day in 2004, he underwent his first heart transplant.

Karen and I received the call at 4:00am while we were in the catacombs of Egleston hospital where there were some sleeping rooms for parents. The nurse called to gleefully announce to us that a heart had been located. I figured it was going to be awhile before the donor heart would make its way to the hospital and I knew it would be a long day of surgery so I jumped into the shower to wake me up and to get ready for what lay ahead.  About 20 minutes later, Jacob’s nurse called and frantically said, “Where are y’all?  They’re about to take Jacob away for prepping!” We rushed up to the floor, tying shoes in the elevator, to get the chance to see Jacob and tell him we loved him (and praying it wouldn’t be for the last time). Thankfully, we made it in time.

The rest of the day was a whirlwind of updates and activity around us as the waiting room grew crowded with family and church friends praying for a Christmas miracle. And it came … as you are aware, Jacob successfully received his new heart and made it home a week later. A miracle.

Throughout Jacob’s life, we have been reminded again and again that he was a miracle.

The doctors told us that Jacob’s congenital heart defect was 100% fatal without medical intervention. God sent us to the right doctors and hospitals that were used to bring us this miracle baby.

With each open heart surgery that was performed by Dr. Bill Norwood at Children’s Hospital of Philadelphia and his entire team of nurses and doctors that served Jacob and Karen and I so well, we thanked God for the miracle of continued life for our son.

With each check up and each time he got sick and with each successful recovery and report, we reveled in the miracle we held in our arms.

And with the success of the first transplant (and the second one as well), we once again thanked God for His grace in giving us this miracle.  But we always acknowledged that with advent of our miracle, another family’s life was shattered and their broken miracle was scattered across the floor.

And then on June 14, 2009, our last miracle didn’t happen.

I can hear many of you now saying, “Come on, Richard, you’re a minister. Surely, you understand how this works.” Honestly, I don’t. I’ve read and I’ve studied books about God’s sovereignty and about the power of prayer.  I can give you the ‘book’ answers.  But as a grieving parent, those ‘book’ answers ring hollow. I can buck up my spirituality and quote Matthew 5:45, “it rains on the just and unjust”, but as a parent I long to have my child back with me. 

And I can even grasp the concept that my Jacob is no longer suffering and is in the presence of God with a perfect body … and that does give me peace …. But there are many times, as a parent, my greater wish is to have him around to trade jokes with and to ask about his day.

So, as I have said on numerous occasions, on days like today and other times throughout the year, it is such a quandary of emotions for a grieving parent (or spouse) to deal with as to how to survive the day, especially at Christmas time.

For example, later today Ben and Beth will be arriving with our two grandchildren, Tucker and Libby.  We love them. We adore them. They will be bringing such joy and Christmas excitement with them. We have planned some great memories to create with them.  Then Katie and Andy will arrive on Christmas Eve and we will have “the family” with us on Christmas. That’s every parent’s Christmas dream, to have their family with them.   But it always gnaws on our heart that Jacob will be forever missing as part of our family and we will be missing him and wishing that one more miracle could have happened.  There is such sorrow mingled with such joy.

So as a minister, I know the ‘book’ answers. But as a parent, I’m standing next to the father in Mark 9:24, “I do believe, help my unbelief.” I know that God himself has experienced the loss of a son.  And Jesus, in his earthly body, experienced loss and he also felt the lack of understanding of a plan – but in that lacking still trusted in God’s love and plan. I know God loves me and wants the best for me. But often, in the pain of grief, I feel like I’m living what C.S. Lewis described when, in his pain, went to God and only heard the slamming and bolting of the door and then only silence as he stood outside alone. It’s like I’ve developed a type of spiritual bi-polar disorder. One minute I’m bathed in the presence and love of God and then in the next I feel abandoned.

So for now, even when I don’t see how this is ‘best’ for me and my family, we must trust Him as we journey through this forest of loss, seeking those patches of light that pierce through the darkness of the trees until we experience the final miracle of eternal life in the presence of God and re-united with Jacob and a host of other loved ones.  And that’s what the miracle child of Christmas has brought to us.

Merry Christmas to all!

The family minus one

My Admiration Keeps Growing

by Richard Edfeldt

When Karen and I moved to Franklin, NC, last February we began doing all the things you do when you move to a new residence in a new place.  Since we had already owned our house for several years previously, we didn't have to worry about utilities and things like that. But we did need to do the 'change of address' thing with the post office, get our drivers licenses for a new state, and find new doctors and dentists.  We accomplished all of this over a period of time.

Our new doctor wanted to establish a baseline on us so we had to endure some blood work and other prodding in uncomfortable places (if you know what I mean).  That is when they discovered that my PSA level was too high, indicating a problem with my prostate gland. My brand new doctor then referred me to a urologist who did his own examination (much to my bent over embarrassment) and, after a few "hmmmmms" and ”uh-ohs", said I needed a prostate biopsy to check a nodule he discovered.

I'll skip over the joys of the biopsy experience and get to the results I received last Friday -

I have prostate cancer.

I'm not sharing this to gain your sympathy or to garner your prayers (probably the subject of a different blog).  The doctors have given a good spin to it, saying we caught it fairly early and that it is the ‘good’ kind of cancer’ (didn’t realize that was possible). They have also said I was on the lower end of the risk spectrum and that I have an excellent chance of successful treatment and continued good quality of life.  I loved that he said that I was still a young man and in good shape (I asked him to repeat that so I could record it on my pocket recorder for future pep talks).

But here are the lessons I'm learning.

First, I'm not a real good patient. I've been fortunate to be fairly healthy throughout my life. Of course, I've had my share of colds, viruses, and injuries. I've also had a few outpatient surgeries but I've never had to spend nights in a hospital as a patient. It sounds like that’s about to end … and I’m not looking forward to it. This leads me to the biggest lesson that has come forward ….

My admiration and love for Jacob Edfeldt continues to grow!

From day one in his life, he consistently faced and endured doctor’s visits, consultations, medical procedures involving needles, blood work and the like, surgeries, and extended hospital stays.  As much as I dread what’s coming around the bend for me, I can’t, for the life of me, see how Jacob handled all of those ‘dreaded experiences’ with such fortitude.

I’ve tried to recount what all he went through in his twenty-one years and I become ashamed of my own little bit of whining that I’m emoting about what I am facing.  I’m sure I’m missing some things, even though Karen and I were sitting beside him throughout each experience, but by my count, he underwent five open heart surgeries (including 2 heart transplants), a major thoracic surgery, a pacemaker insertion, at least 40 heart catheterizations, plus your normal assortment of doctor’s visits.

Now don’t get me wrong … he wasn’t a saint about it and he had his share of meltdowns and pity parties … but, for the most part, he understood what he had to face and, somehow, generated the willpower to endure each encounter with remarkable maturity, grace, faith, and even humor.

I am humbled to have been his father and can only hope I can display the same demeanor and courage as my son in the days ahead and with a diagnosis that sounds far less ominous than the one he faced every day of his life. I am a daddy who hopes to emulate his son.

The Exclusive, Complicated, and Unspoken Language of Grief

 by Richard Edfeldt

People who have experienced the loss of a loved one have instantly acquired a new language - the language of grief. It is a language that is not composed of words, but of emotions that is activated by sights and sounds. This language appears suddenly and in unexpected times and places.

The language of grief is an unspoken language but it speaks loudly to those who have acquired this vocabulary. And, through glances to one another, they communicate in this grief language. One of the most amazing aspects of this mode of communication is that people around those using this language have no idea this is taking place.

Let me give you a personal example.

Karen and I went with some friends to watch another friend participate in a dulcimer concert at a well known local landmark.  Given the time of year , the music was comprised of some beautiful Christmas tunes from around the world. We were thoroughly immersed in the glory of the moment, enjoying the music with friends.

The leader introduced each song selection and explained its point of origin. After completing one wonderful rendition of a holiday melody, she announced the title of the next composition- "In the Bleak Midwinter". This was when Karen and I glanced at each other and, in the midst of an atmosphere of joyous holiday spirit, we began to communicate in the exclusive, complicated, and unspoken language of grief.

As the first notes of this beautiful tunes filled the air, our eyes began to fill the tears and our hands reached for each other. No one else in the room knew we were suddenly 'speaking' to each other using the language of grief and, in their defense, there would have been no reason why they would have known why this melody would have thrust us into this language. Only Karen and I knew why and so we were the only ones using the language. Here is why:

When we lived in Gainesville, Georgia, back in the 1990's, Jacob became involved in the community's musical theater group. This was a brand new world to our family, especially to me. Ben and I shared (and still do) a love for baseball so I could go in the backyard or a nearby school field and work on improving a certain skill he needed in the game. Katie and I shared (and still do) a love for choral music and so I could help her in certain ways as she practiced her songs.  But the theater was a foreign land that no one else in the family had ventured.  There was no point of reference where I could use my experience or expertise to help Jacob in this realm.  All I could do was be a supportive parent who made sure Jacob was at all the practices.

One of the productions that Jacob was a cast member of was a musical presentation of 'A Christmas Carol'. He had a minor part playing a street urchin in several of the village scenes. He loved the experience and seemed to light up when the stage lights were on him. It was a beautiful interpretation of the Dickens' classic. 'In the Bleak Midwinter' was the opening song and recurring theme of the stage production.

So when the dulcimers began playing the notes of this hauntingly lilting composition, Karen's and my eyes locked on each other and we listened to grief speaking to us as our eyes wept and our hands trembled.

Such is the experience of those who know the exclusive, complicated, and unspoken language of grief. At a point in time you acquire the language and throughout the rest of your life, in the most unexpected times and places, you find yourself hearing grief speaking to you.

Some Would Say This is a Good Thing. If So, Why Do I Feel So Ashamed? (by Richard)

It started out as another normal Saturday…. taking care of a few household chores and then settling in to watch some college football.  As I watching some of the best games of the day, I was doing some mindless computer work and internet surfing.  I saw a commercial advertising that the musical, Wicked, is coming to the Peace Center in Greenville, SC next February.   I quickly got on their website and checked about the availability of some tickets to see this play that evokes so many memories of our years with Jacob. I was happy to be able to secure some good tickets that will serve as a nice Valentine’s present for Karen.

I called up my calendar on my computer in order to record this outing…when it hit me.  On a note posted on this date is a reminder that seven years ago Jacob underwent his second heart transplant.  It jolted me to my core!!!  I had forgotten the importance of this day!

To anyone who has lost a child or another close loved one there are certain days of the year that hold a higher and poignant significance. Days like birthdays, anniversaries, Mother’s Day, Father’s Day, holidays, and, especially, the day we lost our loved one conjure up memories of that person.  In Jacob’s case, we add on two more momentous days – the dates of his two heart transplants.

I have written in previous notes I’ve posted on Facebook that for many friends of Jacob’s and friends of our family, they have continued on in their lives. They recall occasionally a happy memory of their time with Jacob but, for the most part, those memories are shelved in a remote section of the brain as they deal with other things in life.  And that is to be expected …. for them.  But not for parent or sibling or spouse who has lost a loved one.  Those memories stay closer to the surface and many things will bring those memories to mind on a daily basis. But special days, like were listed earlier, will stir those memories up to remembrance like a blast of arctic air that takes your breath away when you open the door.

However, friends and well wishers will whisper to one another about their grieving friend, ‘some day they will get over it and, I hope for their sake, they get over it soon and move on.’

So, is this the day I’ve ‘gotten over it and moved on’?  Did the busyness of the day of getting chores done in time to watch my favorite teams play cause me to momentarily forget about the significance of the day?  Some would say that’s a good thing.  If so, why do I feel so ashamed?  How could I forget this day among a handful of others that impacted us so deeply? Are the memories of Jacob fading from view? 

I guess this is may be a new phase of the grieving process.   We don’t talk of Jacob as often. You may have noticed I don’t post as many things about him as I once did.  We recognize that people have moved on and there’s an awkwardness with some people when we bring up a memory of him in their presence.  As a result, in a sense, we have gone underground with our grieving. But I assure you, we still grieve! There are still times of sadness and tears, but mainly in private.

So the seventh anniversary of Jacob’s second heart transplant nearly slipped by me, but it didn’t.  Some would say it would have been a good sign if it had.  Who knows, maybe some year it may slip by me entirely. If or when that happens and I come to realize it, I expect I’ll feel as ashamed as I do today.  I never want to get to the point of ‘getting over it’ that I forget days like today. Jacob’s life means too much to me. I may get to a point where I fail to post some tribute (as I have in the past and like this today) but I hope I will always have quiet moments of reflection on days like this.

I’ll close this somewhat sobering and sad tribute with my favorite memory of that mind boggling day that I posted last year on this day - http://embracinggrief.blogspot.com/2013/11/another-anniversary-by-richard.html.

Chili's and McDonalds

by Richard Edfeldt

Today is the 26^th birthday of Jacob and as you would expect, it unleashes a flood of emotions (literally) and a host of memories of that significant day. Here are a few:

Karen and I were aware of Jacob’s fatal heart defect (hypoplastic left heart syndrome or HLHS) for several months before he was due. We had to endure months of hearing what were our options were (A. an abortion, B. do nothing, C. move to California and hope for a heart transplant [human or baboon], or D. palliative surgery only done in Philadelphia).  Added to the oppressive weight of this decision was the impact this decision would have on our other two children and the financial ramifications of it all.

What helped us cinch our decision came through an appointment with a fetal echocardiologist in Houston who became a trusted friend. Doctor Jim Huhta was at Texas Children’s Hospital at the time and we were sent to him to confirm the diagnosis we had received from Karen’s doctor.  After he performed the procedure and, indeed, confirmed that dreaded diagnosis, Karen asked him this question, “What would you do if this was your child?”  He tried giving the expected answer of saying he couldn’t say and that it was our decision to make. But Karen would have none of that and pushed him for his real response. Finally he took a deep breath and gave his answer.  And his answer became the driving force in our decision making and care for Jacob throughout his life – he said, “I would do all I can within my power to provide a chance for life for him.”  Doctor Huhta then went on to explain that he had just accepted a new position on staff at Children’s Hospital of Philadelphia (CHOP) to work with the world renowned surgeon, Dr. William Norwood, who had pioneered a series of palliative surgeries for HLHS that showed a lot of promise.

On March 8th, we said our tearful good-byes to Ben and Katie and to my parents (who had come to take care of them) and boarded the airplane headed for Philadelphia.  Normally, starting a trip that would end in a birth of a child would be surrounded by excitement and joyful anticipation. To be sure, we were excited that we were close to the birthday of our third child and had already carefully chosen his name – Jacob Blackburn Edfeldt.  But there was also a heavy cloud of dread of the vast unknown as to  what we would be facing. Would we be coming home with happy hearts as we held an infant … or with a crushed soul

accompanying a casket?

Philadelphia's Ronald McDonald House

We had been in contact with the Ronald McDonald House in Philadelphia (the original one!) and had a room reserved for us. We landed in Philadelphia and took a taxi to the beautiful house. We met with the RMH staff and they gave us the tour and explained the rules of the house. Once we settled in, we faced the decision to find a place to eat.  There were several restaurant choices down the street a few blocks. So we began to walk down the street in silence, lost in our fears and neither wanting to make the decision as to where to eat.

We turned a corner when we saw it.  Here we were, two scared young adults from Texas struggling with making our way around the foreign land of Philadelphia and grappling with the reason why we were there. But the decision of where to eat was made for us in an instant. There was Chili’s, specializing in Tex/Mex food! It was like saying, ‘You’re not in a foreign land after all. Here is a little bit of home for you.’ We went in and had our fill of chips and salsa and ordered up fajitas for two.  Except for having to ask for ice in our tea, we felt like we were back home, at least for a few minutes.

Karen and Jacob at birth

The next days were filled with meetings and preparation for Jacob’s delivery and the first of three open heart surgeries. And then Friday, March 11^th, arrived and so did Jacob via C-section!  Karen and I were able to see Jacob for a few seconds after his delivery in the University of Pennsylvania hospital before they carted him off through a series of tunnels to nearby Children’s Hospital of Pennsylvania.

The following Tuesday,  Karen and I experienced the first of many times when we walked by the gurney wheeling Jacob into the surgical room; pausing long enough to give him a kiss and pushing the terrible thought away if it would be the last kiss.

On that day, they performed the first of what became many open heart surgeries in Jacob’s life and the relief and thanksgiving when told he came through surgery just fine.  I remembered distinctly how cold Jacob’s body was when they brought him out into the hallway, due to him being packed in ice throughout surgery.  How thankful we were that they had prepared us for that eerie tactile sensation.  We often joked with Jacob about being so hot natured was a result of those ice baths.

Leaving Chop

Over the following weeks, other memories were made:

• The Polaroid pictures of Jacob Karen had taped to her hospital bed
• Long days sitting and holding him in PICU
• Long nights trying to sleep at RMH while thoughts pestered you about what the next day might bring
•  Cold and snowy days in the northeast for a couple born and raised in the south
• Ordering real Philly cheesesteaks from trucks parked outside of the hospital (imagine a ‘wattayahav, wattayahav, wattayahav’ with a major attitude!)
• Daily mile long walks to and from Ronald McDonald House to CHOP through the campus of University of Pennsylvania (a beautiful campus)
• Pushing Karen in a wheelchair from RMH to CHOP up and over a bridge and on that same mile long walk through the university. Unfortunately it was across a brick walkway (no way to soften the jarring of each brick for Karen who was recovering from her own surgery no matter how hard she hugged that pillow)
•  Enjoying meals made by volunteers at the RMH
• The conversations and comparing notes with other RMH parents

Back in Houston

And the best day … the day we flew home with a three week old infant!  He may have a little blue in his skin color due to mixing of his blood as a result of this ingenious surgery by Dr. Norwood, but he was alive! And he was coming HOME!

Finally Home

And being greeted by the best welcome home party in the world being comprised of an 8 year old boy and his 2 ½ year old sister ready to meet their new little brother, Jacob, and begin their next stage of life as a family.

That’s how Jacob’s journey began 26 years ago …. and what an extraordinary journey it has been!

Family Dedication 1988