Woulda Beens

Today is Jacob’s birthday.  He would have been 28.

I always wince when I utter that phrase ‘would have been’ because it inevitably brings pain and sadness to me every time I say those words or think those thoughts.  It also conjures up a basketful of ‘woulda beens’ to sift through, like:

What would’ve he been doing today?

What kind of career would he have had?

Where would he have been living?

Would he have been married?

Who would he have been married to?

Would he have had any children? How many and what would have been their ages? What would their names have been?

The ‘woulda beens’ can go on and on if I catered to them.

But I realize that it serves no good purpose to participate in this type of exercise.  It only stirs up the grief yet again and picks at the scars. You can’t change the past.  Dandy Don Meredith, that happy go lucky Dallas Cowboys quarterback who played in the 60’s and was also Howard Cosell’s sidekick when Monday Night Football first started, coined a well known phrase. He used to like to quote during a football game that had run off the tracks, “If if and buts were candy and nuts, we’d all have a merry Christmas.” 

We can’t torture ourselves with the “if onlys” and “if I could go back and do it over again” scenarios.  There is no time traveling DeLorean that Dr. Emmett Brown has created that we can jump into and go back to change the future to our liking. We have to accept the fact that we did the best we could at the time and in the light that we were given for our loved one. To do otherwise is only to cause damage to ourselves and, in a sense, dishonor the memories of our loved one.  It is better to focus on the memories that bring the tears of joy rather than cry over ‘what could have been’.  That does not negate the pain of grief. It’s a natural desire to wish to have the lost loved one back in our lives.  But due to the imbalance that sin has wracked this world with, the loss of a loved one to a disease, to an accident, or becoming collateral damage in someone else’s poor decision making, we have to endure carrying this burden. It’s only those memories of love that can make the burden more bearable. But there is no going back.

I find it strange where I’m at in the grieving process. Now, when I begin to formulate the ‘woulda beens’ about Jacob’s life there is a wee bit of warm whimsy and sentimental thought that gets mixed in among the grief.  Here’s what I mean:

·         I can only imagine, if he would have survived and lived, that he would be enjoying life to the fullest…. because that’s the way he lived life in his first twenty-one years.

·         I don’t know what kind of job he would have held, but it would have been with a crowd of people around him … for he loved people and being with people.

·         I don’t know where he would have been living …. but I don’t think it would have been far from Karen and me … or his sister, Katie, whom he loved so much.  He didn’t like to be too far from home and family.

·         If he had been married, he would have been a loving and caring husband …. because he cared for others and wanted to see to it that they were happy.

·         If he had been married, Karen and I would have had a lot of explaining to do with his patient and loving wife … because he didn’t keep the cleanest house and he was basically useless at fixing things. But the woman he would have fallen in love with and committed himself to would have been the luckiest woman on earth … because he would have doted on her hand and foot.

·         If he had children, they would have been the most loved kids on earth (nosing out only his nephews and nieces by only a little) …. because Jacob LOVED kids!

But tragically and sadly, these are only ‘woulda beens’ because Jacob died at age 21 and he will forever be that age in our minds … except for when we share other memories of him at other stages of his short life. 

Easter 2009

And so we will have to be content with shuffling through the memories or the photographs and videos of him at different ages and stages …. remembering, reminiscing, laughing, crying, and sharing the ‘woulda beens’.

Happy ‘Woulda Been’ 28^th Birthday, Jacob.  We love you and miss you.

Jacob's Journey, a video tour of Egleston

This 10 minute video was recorded by a good friend of ours, David Doyle, following Jacob's first transplant.  David and his wife, Lesa, were part of a support group of friends in Houston that cared for us during some difficult times in our life.  Now, David and Lesa have joined Jacob in heaven.

https://www.youtube.com/watch?v=Nm9ptKCUAq4

Great Friends who are missed.

These Two

These two.... (warning, long post ahead)

This Friday, March 11, would have been Jacob's 28th birthday. Richard and I have shared often about his life and how he impacted so many. Today, I want to share a little bit about Ben and Katie.

This week is always filled with lots of memories for us, so bear with me. On March 8, 1988, Richard and I boarded an airplane to Philadelphia to deliver a sick baby at an unknown hospital. His future was so grim and we were going to a place where we knew nobody and had no idea of how long we would be there. At that time, the treatment of HLHS (hypoplastic left heart syndrome), was in its infancy stage and we were going to one of two hospitals in the country that were having any success with surgeries.  Jacob was scheduled to be the 76th baby to have this series of procedures performed on him.

In the weeks leading up to us leaving for Philadelphia, I would have uncontrollable crying spells over the thought of leaving Ben (age 8), and Katie (age 2). We lived in Houston, Texas, at the time and had no family nearby. Richard's parents came out to take care of them, but the kids weren't really used to them.
Fortunately, we had wonderful friends to fill in the gap. I will never forget pulling out of the driveway and waving to Ben, who was crying inconsolably, and Katie, who was waving at us with an adorable smile. In the few days before Jacob was born, our access to them was so limited (this was before cell phones, FaceTime, etc). There were no phones in our room at the Ronald McDonald House - just one phone for the whole floor. Hospital phones were almost nonexistent.

One night, the song from the movie "American Tale" (a family favorite) came on the radio in our room. When we heard those words:

"Somewhere, out there, beneath a pale moon light,
Someone's thinking of me, and loving me tonight,"
"And even though I know how very far apart we are
It helps to think we might be wishing on the same bright star"
"And when the night wind starts to sing a lonesome lullaby
It helps to think we're sleeping underneath the same big sky"

Richard and I were overcome with such anguish and grief over missing these two. Today, whenever I hear this song, sung by Linda Ronstadt and Aaron Neville, I am still transported back to this time in my life and overcome with deep emotion.

From the time we came home with Jacob, Ben and Katie's lives were changed. I was totally housebound with a very medically fragile child that no one, not even our doctors, knew how to take care of. I missed many important school events, baseball and soccer games, church events, etc. I spent several birthdays holding Jacob on the steps in our kitchen, watching while Richard held outdoor birthday parties for Ben and Katie. Our doctors were adamant about Jacob being around as few children as possible. This meant no play dates or sleep-overs at our house for Ben and Katie. Their childhood had to adjust to the needs of their sick baby brother. They grew up learning how to read pulse oximetry machines, taking blood pressures, giving lots of meds, spending endless hours in doctor and hospital waiting rooms (before you had smart phones to entertain them).

When they became teenagers, they were not allowed the luxury of teenage drama. Somehow, they both just knew that Richard and I couldn't deal with any more stress. They did well in school, had after school jobs, made good friends, and were always there to help when there was a crisis, of which there were many.
They both had to change schools several times during their middle and high school years due to church changes. It was very difficult, but they handled it with grace and dignity.

Today, they have successful careers, married perfect mates, and live meaningful and purposeful lives. Somehow, despite having a childhood that meant putting their brother's needs before their own, they have never shown any resentment towards Jacob. I am sure they must have felt it, but it never stopped them from loving and taking care of him and each other. He was lucky to have them for a brother and sister.

It is hard for me to write about these "two," when it still should be these "three;" however, it is what is. I have always said that the best job I ever had was being a mom and these two made it such an honor to be their mom. They somehow just know how to step up and support their parents, whether it is in the years following the death of their brother, or burying a beloved grandmother, or helping us deal with the aftermath of a flood. I love them both and am so proud of the adults they have become. I look forward to see what the future holds for them.

Under a Canopy of Blessing

by Richard Edfeldt

I woke up today and started my routine like any other morning … took the 3 dogs out for their first walk of the day and brought them back in for their morning feeding.  Then I fixed my first cup of coffee when I was reminded of the significance of the day.

Today is the 8^th anniversary of Jacob’s second heart transplant

Yes, these anniversaries of special events in Karen and my life still affect us.  Our emotions are still stirred.  We may not weep as much as we have in past years due to time’s way of equipping our coping mechanism to handle such occasions more effectively.  But the melancholy is still there, the grieving of who and what is missed still bubbles toward the surface a little more forcibly on days like today.

But today is one of anniversaries where we celebrate a day when we were able to ‘renew the lease’ on Jacob’s life, albeit at the horrifying cost of another and that person’s family.

I always approach these days as an opportunity to write something.  It is a way to share a tribute to Jacob’s life – a way of helping me to remember – and a way to allowing you to share in the memories.  I know some are hesitant to speak of Jacob because you think it brings pain to us.  I will admit that often when we speak of a time in his life with someone who shared that event, a tear does come and a catch in our voice does occur.  However we agree with Elizabeth Edwards, who also lost a child, who said:

“If you know someone who has lost a child or lost anybody who’s important to them, and you’re afraid to mention them because you think you might make them sad by reminding them that they died, they didn’t forget they died. You’re not reminding them. What you’re reminding them of is that you remember that they lived, and that’s a great, great gift.”

So I will continue to post these remembrances and my feelings for as long as they come to me.  There may come a day (which almost happened last year, http://embracinggrief.blogspot.com/2014/11/some-would-say-this-is-good-thing-if-so.html) when an anniversary will slip by or a time will come when I feel that I have nothing to share.  But today is not that day.

But let me get back to what started this today - that first cup of coffee. The cup that jogged my memory is special because it was one that Jacob had made for us back in 2006 (Little did we know that a year later what we would be enduring).  We have several ‘works of art’ that Jacob made at a pottery shop we frequented back then.  The shop would have different things already made that you could choose from and then paint. They would then glaze and fire them for you.  We have a chips &dip bowl and a creeping frog among several things that Jacob enjoyed painting and giving to us. They may not garner many bids for them on Ebay but they are priceless pieces of art to us. This coffee cup is one of those and this day it brought this memory from November 15, 2007.

Karen and I have shared other times about that day.  Here are those articles:

11/15/09 - http://embracinggrief.blogspot.com/2015/02/november-15-2nd-anniversary-of-surreal.html

11/14/10 – (by Karen) http://embracinggrief.blogspot.com/2010/11/november-14-what-day.html

11/15/13 –  http://embracinggrief.blogspot.com/2013/11/another-anniversary-by-richard.html

The memory that came to mind today was the last moments before Jacob was carted away to his second heart transplant surgery. Karen mentioned it in her posting by in 2010.

We had received word that a heart had been located and was being transported to Egleston around midnight ushering in November 15.  Four hours later, the team of surgical nurses and technicians came with a gurney to cart off Jacob from his ICU stall.  Remember now, this was a children’s hospital so at that time Jacob was one of the oldest ‘residents’ of ICU.  All the other patients were infants or small children and all were asleep or could not grasp the severity and sacredness of the moment.

But as we escorted Jacob and his medical entourage down the long center aisle of the ICU, each doctor, nurse, and technician paused from what they were doing and whispered a blessing on Jacob of some sort …

“Love you, Jake”

“See you soon, Jacob”

“Godspeed, Jakey”

Or they would say nothing but salute him with a ‘thumbs up’ sign as we slowly walked under that wonderful canopy of blessing and prayer.  What a solemn, holy moment!

I’ll save other memories for another anniversary but that one is one that will always be dear to Karen and me because of the bond we had with the excellent medical staff at Egleston and that canopy of blessing they provided on that eventful day eight years ago.

The Silence of God

(by Richard)

I readily admit that I am not an intellectual giant (and I’m sure I can find plenty of people who would be quick to step forward and testify on my behalf on this).  I have tried to read C.S. Lewis on several occasions and after a paragraph or two, I would have to pause and say to myself, “wait, what did he just say?” and feel the need to break it down one word at a time.  And with that much mental overexertion, I would quickly lay aside the book.

However, after Jacob’s death, there have been times when I had an insatiable need to read in order to find some sense in the pain experienced in the loss of a loved one and to find answers to questions such as:

Why did God allow this to happen?

Where was God in all of this?

Why were my prayers unanswered? As well as the prayers of many others on his behalf?

How can this be part of God’s plan?

Does prayer really accomplish anything?

I tried to read many good books that helped me cope with these questions but doubts still remained.  Being a minister actually made things worse because I had spent my career teaching and telling people to ‘have faith’; that ‘God is in control’; to’just pray about it’; and on and on my words of ‘comfort and counsel’ had gone.  But now, I was the one that was feeling empty and those ‘comforting words’ were only hand full of thorns that had caused additional pain.

That is until I read C.S Lewis’ “A Grief Observed” … and came across this quote:

 But go to Him when your need is desperate, when all other help is vain, and what do you find? A door slammed in your face, and a sound of bolting and double bolting on the inside. After that, silence. You may as well turn away. The longer you wait, the more emphatic the silence will become. There are no lights in the windows. It might be an empty house. Was it ever inhabited? It seemed so once. And that seeming was as strong as this. What can this mean? Why is He so present a commander in our time of prosperity and so very absent a help in time of trouble?

Wow, he described that same deafening silence I was hearing from God!

As I continued reading on this subject I began to find other people who are well known and well thought of in spiritual circles who described their times of ‘spiritual darkness’ or ‘spiritual dryness’.  And as a result, I quit persecuting myself and came to realize that this is only a part (though a very painful part) of the spiritual maturation process.

I have found myself on a part of the spiritual path I was never aware of before the death of Jacob and one I was not prepared to journey, no, not one iota.

For a period of time I felt I had been abandoned.  Lewis’ description of the doorway was all too real to me.  But now I’m realizing, in the midst of the silence, a very different type of closeness to God  -  one that is difficult to describe.

In recent years, my mantra has become “expect nothing and you won’t be disappointed”.  As cynical and skeptical as that sounds it has really helped me to cope with a lot of things. And in a really strange way, it has simplified and deepened my faith and relationship with God.

Let me explain before you say (if you haven’t already been saying it), “Poor, poor, Richard.  He has really slipped down the steps and gone off the deep end.”

In expecting nothing, it has caused a shift of focus from the gifts desired and now onto gratitude for the giver.  Before, prayer and my entire relationship with God hinged on what I hoped to receive out of it. I always came with great expectations.  And those expectations would sometimes end with disappointment.

Now I come with no expectations. I only strive to be aware of His presence.  I have slowly come to appreciate the small things that come my way now.  I have lowered my expectations of great things and big answers.  Now whatever good comes my way, no matter how small or seemingly insignificant, I try to celebrate on the gift given and, to a greater extent, the giver giving it.

I now find joy and express thanksgiving in things like:

- a car starting (and stopping)

- the wag of a dog’s tail

- the quietness of early morning

- a night sky full of stars

- the sound of rain

- sunrises and sunsets

- the wonder of hummingbirds

- the comfort of the company of friends

- another day with loved ones

- a comfortable home on a cold, rainy night

- knowledge that my children are well for the moment (and that Jacob is well forever)

- the silent, loving presence of my wife

- acknowledging the worth of a person with a smile and cheerful word

- hearing from a childhood friend through Facebook

- walks in the woods

- watching squirrels quibble over a piece of birdseed

- the babbling of our backyard brook
- viewing a deer grazing in the meadow
- gazing at a picture of my grandchildren which brings a tear to the eye

And yes, even in a death of a loved one. Though, I must say, this one brings no joy and, often, very little verbal thanksgiving.  It does result in a quiet sense of His comforting presence.

I could go on listing things and, I hope, you could too.

All of these ‘insignificant’ encounters assure me that God is present.  He has not forsaken me.  This list of things is evidence of his love and concern for me.  Though I may repel from His love at times, though I may even question His love at times … these items are often used to remind me that He is there.

I’m sure you are thinking that this is the strangest tribute to Thanksgiving you’ve ever read.  But I can say that I am thankful for the silence of God in my life.  For as devastating as it has been, it has also opened up a new dimension of God and his presence in my life.  Happy Thanksgiving to all!!!

Bring Him Home

By Richard Edfeldt

My family has become frequent attendees to many  of the musical theater productions that are in the area. Our love for this wonderful form of entertainment was brought to a fever pitch by Jacob’s involvement in it and his love for the theater.

Among our favorites is Les Misérables.  Each time we have gone to see it we are moved by the power of the music and the story being told through song.  I’m not going to go into great detail about the plot of the story. You can buy or rent the recent movie made based on the musical to see for yourself (the acting was good but the singing doesn’t come close to the powerful voices you’d hear in a theater).

There is a song sung by one of the major characters of the play, Valjean.  It is a prayer on behalf of a critically injured young man (Marius) who is in love with his adopted daughter, Cosette.   Here are the lyrics:

God on high, Hear my prayer  //  In my need, You have always been there

He is young, He's afraid  //  Let him rest, Heaven blessed.
Bring him home, Bring him home, Bring him home.

He's like the son I might have known, If God had granted me a son.
The summers die, One by one  //  How soon they fly, On and on
And I am old, And will be gone.

Bring him peace, Bring him joy  //  He is young, He is only a boy

You can take, You can give  //  Let him be, Let him live
If I die, let me die,   //  Let him live
Bring him home, Bring him home, Bring him home.

As you see, it is a prayer of a father figure for a loved one, asking for… begging for restored health for his son.  And so you can understand why I identify so closely with this song.

It was often my prayer (“God on high, hear my prayer”) for restored health for Jacob (“He is young, he’s afraid; he is only a boy. Let him rest, heaven blessed”) so that he could return home (“Bring him home”).  I believe that is the prayer of any parent.  We want our children to be well. We want them to experience peace and ease in this life. We wish for them to enjoy times of joy.  Many times throughout Jacob’s life those prayers were answered….but not the last time.

But in one sense it was … just not the way I intended and hoped.

Indeed, God did bring Jacob home on June 14, 2009. God brought him to his eternal home where he is now enjoying “rest, peace, and joy” in a perfect body. 

I miss him dearly and I often wish he could still be ‘home’ with us.  There have even been times when I have wished for a different ending where “If I die, let me die” but “let him live”.  But that wasn’t to be. Understanding why is beyond comprehension and is a fruitless effort.  As well, it is a maddening exercise to try to understand how this could be in God’s plan.  But it is what it is.

Yet, in those times when I set aside my parental emotions and see through  a set of eternal lenses,  I can also find comfort in the assurance of his present state.  He has a perfect body with no need of further hospitalizations, medicines, procedures, needle pricks, operations and horrible anti-rejection treatments.  To wish him back and to once again endure those things would be selfishness on my part.  But I do miss his smile, his laugh, and his quirks.

And so I hold on to the promise of a future reunion when I, too, am brought “Home”. 

So for now, any time I hear the song, I can only tearfully and vicariously sing the prayer of appeal and find comfort in that he’s “Home”.

Jacob at his first drama class

Jacob in Music Man

Jacob's 'head shot'

Debunking the 'Superwoman' persona

Karen's Specialist Degree in 2008

by Richard Edfeldt

I may pay for this post later, but I wanted to lay to rest a myth about Karen and other mothers who have lost a child.

First of all, I want to share my admiration for Karen.  She is an amazing woman and mother.  She loves her three children and demonstrated (and continues to) that love in an abundance of ways.

Ben, Katie, and Jacob all viewed Karen as Super Mom and Superwoman.  In addition, many of Karen’s colleagues admired her work ethic and quality of work that was always at the highest level.  She always put her students first and had the same expectations of them as she did for her own children.

• She taught them a respect for others. 
• She explained their place in the world.
• She prepared them for their purpose in the world.
• She demanded a lot from them and helped them to reach that expectation.

Karen was Teacher of the Year in 2009

When Jacob was born and faced the daily challenge of life. Karen took on a new calling that any mother in a similar predicament would accept – keeping her child alive.  Each day she poured herself into that goal. She kept Jacob’s medicine intake on schedule; she made sure he ate the proper foods and got adequate sleep; she treated him as normal as possible; and loved him as much as she loved Katie and Ben.

With each doctor’s appointment, medical procedure, and each major surgery, she questioned Jacob’s doctors so she understood his medical status and prognosis.  At times, she was Jacob’s bulldog and defender when she felt doctors were not demonstrating the best determination for his health.

As Jacob’s health deteriorated and as we endured two heart transplants, she put her own well-being aside to focus on his.  And all the while, she kept being a superlative mother, wife, and teacher.

Then we watched across the ICU hallway while Jacob lost his battle with life … and Karen’s fight was over.

This twenty-one year fight took a heavy toll, which most people do not anticipate on witnessing.

The toll that grief takes on a person is obvious, particularly for a parent losing a child.  I feel I can say what I’m about to say because I am a grieving father but ….

The mother’s loss of a child seems to take a heavier toll on her life.

Since Jacob’s death I have seen a change in Karen.  The fight that she carried to fend off the death angels circling Jacob repeatedly throughout his life took a heavy toll.  Her Superwoman persona has taken on some stress fractures and her fragility is showing.  She still can be superhuman in spurts but her physical, mental, emotional, and spiritual well-being have been permanently depleted.  As my brother-in-law described us, Karen and I are ‘damaged goods’.  That sounds rather harsh, but it is an accurate description.  To most but our closest friends and family, Karen and I may seem normal but we are a fraction of what we used to be.

To those who knew Karen in the past may not see any significant differences when around her, but her Superwoman cape has been stolen by the forces of life and death.

I believe this is the way of all mothers who have struggled for the life of their children and have tragically lost the battle.  They were Super Mom and Superwoman in the midst of the conflict.  Their capacity for love and life were larger than life.  They carried on their normal life responsibilities to their husbands, other children, and work as they fought the good fight side by side with their struggling child. They were amazing to behold in the midst of the battle but now the war is over and they show signs of PTSD.  We who are close to them must take that into consideration when interacting with them.  Our expectations need to be tempered due to the damage, seen and unseen, to them.

I know I’m going to pay dearly for this post because Karen does not want this type of attention (in fact, I may need a place to stay for awhile).  Also she will say I paid just as dear a price as her – and that is true.  I, too, have a diminished capacity for life.  But I believe that a mother’s love for her children is different – not deeper, only different – than a father’s love.   And when a mother loses a child, her Superwoman persona morphs into something different ….

A grieving, fragile mother. And you don't recover from that.  You only learn to adjust to the limp in the gait of your life walk.

But she is still a super person….and I love her very, very much!