Thirteen Years Ago

Christmas Day 2004

December 21, 2004 will always hold these memories that I commemorate today:

On this day, Jacob remains (he first entered on December 8) at Children’s Hospital of Atlanta desperately in need of a new heart as his original flawed heart has worked diligently to continue his life but is giving its last heartbeats.

4:00am – we are awakened to a call in our parent’s sleeping cubicle that a heart has been located for Jacob.  Thinking we have several hours to wait for its arrival, I go get in the shower and Karen starts getting ready. Fifteen minutes later we get another call wondering where we were because they will begin prep work soon with Jacob and we won’t see him again before surgery (and terrible thoughts inevitably run through our minds as we scurry up to the floor).

5:30 am – We finish seeing Jacob, loving on him, comforting him, sharing his excitement, nervousness, and fear.  We say a word of prayer and watch him rolled through the doors, wondering ….

7:00 am – surgery begins and may take as long as 12 hours due to his scar tissue from previous surgeries.

12:25 pm – we get word that the new heart is in and beating!

3:15 pm – Dr. Kantor, his surgeon, meets with us to share that his original heart was on its last beats when surgery came and that the new heart was responding well. Then he shared what hurdles remain.

8:30 pm – Here is a copy of a CarePage entry describing our first look with Jacob:

A few minutes ago, Karen and I sat by the bed of Jacob. He was laid out on his back with tubes and wires running in and out and everywhere all over his body. If you stopped to listen, you would hear the rhythmic 'pssssst' of the ventilator and the bubbling of the pleurovac. You would have thought you were in some mad scientist's laboratory. But to us, it was a place of worship.

The emotions of the last twenty-four hours have drained us but everyone around us can see the relief on our faces. We are, indeed, relieved and grateful to be where we are.

• We know rough roads lie ahead but we know the divine Map maker.

• We know Jacob's new heart creates a delicate balance in his body (right now he is running a low-grade fever and his blood pressure needs to rise a few points to keep the doctors happy) but we know the Great Physician.

• We know financial demands must be met but our heavenly Father is the creator of all that is precious.

• We know there will be valleys in the future (near and far) but we will never let go of our Faithful Guide's hand.

Today was a day of excitement, exhilaration (I'll never forget the cheer from our crowded waiting room when Karen reported that the new heart was beating on its own), exhaustion, and exaltation of our God.

Many people have sent messages today, quoting words to various songs and hymns. I want to close by adding my own.
He is worthy, our Father, Creator
He is worthy, our Savior, Sustainer
He is worthy, worthy and wonderful
Worthy of worship and praise!

9:30 – A copy of another entry that exemplified Jacob’s spirit:

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!

Many of you who read this blog were with us in that waiting room or by your computers keeping up with our updates on that momentous day.  We could not have survived without the prayer and moral support we received throughout that day.

Thank you for being there thirteen years ago today … and every day since then.

We celebrate this day and miss him every day.

No Need to Pray for Me

I hate to admit it but often that blasphemous thought “no need to pray for me” runs through my mind.  Before you go off and begin praying (despite my wishes) for my salvation or write me off as an unappreciative heretic, let me try to explain what is running through my demented mind.

Many of you read my entries into this blog and you see my assorted and scattered thoughts that I put to writing and post on Facebook.  They tend to revolve around how Karen and I (along with Ben, Beth, and Katie) are managing after the death of Jacob (our son and brother).  They are often maudlin and depressing to the reader, especially to one that hasn’t experienced the depth of pain that we are expressing.  Our verbalization of our pain is usually compared to a scab being ripped off an old injury and our recounting of such an experience that pricks our heart can often become uncomfortable to the reader.

Frequently, the reader will express their love and concern for us by responding with a well intended “I’m praying for you.”

Well, I’m going to be brutally honest right now …. Please don’t.  As harsh as it sounds, I don’t need your prayers. 

Before you walk off saying, “Well, I never! That ungrateful cur!” let me explain.

As a minister and as a Christian, I know the value and power of prayer.  I will admit that I have struggled with how our use of prayer is sometimes misguided.  But I know God relishes our communication with Him and our acknowledgment of His sovereignty.  So please understand I am not seeking an abstinence from the use of prayer in our lives.

Let me try to accurately articulate my reason for this seemingly bizarre request.  Often, when we say to someone “I’ll pray for you” it is much more akin to the dreaded southern expression “Bless your heart” (interpreted "you poor thing").  Let me be clear, I’m not seeking anyone’s pity.

Another interpretation I generally have from the phrase “I’m praying for you” is “I hope you get better soon” or “I hope you can get over this”.  Grief is not a disease with a cure.  You don’t get over it.  And honestly, I don’t want to get over it!  Grief is and forever will be a part of me.  I’ve been told I am now ‘damaged goods.’ I have been forever altered.  I’ve heard the pain of grieving compared to an amputation.  You are now missing an integral part of your body.  I’ve read that amputees often have sympathetic pain where they still feel a tingling where that missing limb would still be attached.  They reach out for it and then are reminded of the present reality that it is no longer there.

As painful as these flashbacks and reminders are, I do not want to “get over” my loss of Jacob. I do not want to “move on” and forget about him.  He was and still is an integral part of my life.  I love the remembrances I have of him, even though they are frequently shrouded in grief, pain, and tears.

So, please, don’t say “I’m praying for you” in that manner.  

But I do value your friendship and your concern.  I don’t want to lose that.  I also appreciate the relationship that many of you had with Jacob and the impact you had on his life.  So here’s what I prefer you to say to me (and I will speak for others who would make this request):

“Thank you for allowing me to share in this experience with you.”

“I miss him too”

"What a precious memory to hold on to. Thanks for including me."

"Your love for him is so evident."

“Thank you for being so transparent.  It means you trust me.”

“Thanks for sharing this. I love to hear stories about him.”

“I love you, my friend.”

“I have had a similar experience.  Let’s get together and share stories.”

“He holds a special place in my heart as well.”

“I wish I could have known him. He sounds like such a special person.”

“Thanks for sharing your heart.”

In closing, here are two quotes from famous people who know the ever present pain of grief.  They eloquently express the value of sharing our hurting hearts about the pain of losing a loved one with our loved ones and the holy communion it creates between the two parties.

“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.” – Elizabeth Edwards

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love.” ~ Washington Irving

What's in Your Backpack?

Everyone has burdens that they carry in their life’s backpack on a daily basis.  These burdens come in all sizes and configurations. They can be good burdens to have while others are ones we would just as soon not have to carry. There are times when we are able to remove a burden or two from our backpack, lightening our load and there are times when we have to take on an additional load. There are other times when the burdens we carry will grow and add more weight to our backpack.  But we know that everyone is carrying around burdens in that backpack of theirs.

I just wish that there was some type of weigh station similar to what you see on our nation’s interstates where you can go to check to see if you are overloaded so you don’t do permanent damage to yourself. But there seems to be no weight limit sign on our backpacks and no governing official to say we are at our maximum weight limit.

Some of the burdens we carry are a result of our own choices – some good, some bad.  Other burdens in our backpack have been added without any choice or agreement from us.  It has been thrust upon us and we must learn to adjust to the new burden as we move on down life’s highway.  Unfortunately, we often see those who have given out under the weight of their burden and are seating at the side of the road, either waiting for a second wind, or a hand up, or a person to take some of the weight out of their backpack. Sadly, in some severe cases, they have completely cratered under the load they have accumulated.

For most of the burdens we carry in our backpack, we have an assigned pocket to carry it in.  We are able to add pockets and we can adjust our pockets to accommodate the burdens that are in our backpack. These pockets can help to balance out the weight in our backpacks so that we can better handle the totality of the weight the burdens bear in the backpack.  As the different burdens are secured we become accustomed to the balance of the new weight and can resume our normal activities.

However, one of the most severe and challenging of burdens that are added to our life’s backpack is the death of a loved one, especially the death of one of our children.  The burden of grief is the most difficult to manage in our backpack.  Contrary to what many people think (and they are usually people who have never had to carry this particular burden of grief), this is not a weight that you can remove from your backpack. It is not a burden you can ‘get over’, get rid of or can forget you have contained in your satchel. The burden of grief becomes a constant weight in your backpack of life.  You never get rid of it and you really never get used to it. Grief never gets lighter.  And most worrisome of all is that this weight cannot be secured in a pocket.

What does happen when a person has this permanent burden of grief added to their life’s backpack is that the person becomes accustomed to the added weight as long as it doesn’t shift around too much.  We eventually learn to carry it better so that to an untrained eye, it appears that we are “back to normal”. 

In reality, if something happens that causes that burden to shift in our backpack we are suddenly reminded of that originating experience of grief and the life and love that was snuffed out too soon.  Because of that shift in weight, we may falter or fall to the wayside of the highway. We may wince or cry out in pain or we may re-injure ourselves causing us to temporarily detour off of our life’s journey.  And, not insignificantly, that original pain of grief is seen by all.

There are times in a year where you can expect that weight to shift and cause pain again – birthdays, death days, most holidays, and other special family occasions. You can count on experiencing varying amounts of pain on those days. And those who are walking with you will know and understand the reason for your pain and tears and will be there to provide support and comfort as you sit by the road for a while.  But there are other days, when the weight unexpectedly shifts as a result of a sound, a scene, a word, a song, a person, a thing, a picture – and that grief pain strikes suddenly and catches us off guard. At those times, we are thrown off balance and will need time to readjust the ‘weight’ and allow for the pain to subside slowly. After a period of time, minutes to days, we can resume our journey.

So if you see a person struggling with their burden, either staggering back and forth on the road or sitting on the side of the road with tears in their eyes there’s a good chance you have encountered someone whose burden of grief has shifted on them and they are struggling under the load.  It would be a blessing to them if you would volunteer to adjust your gait to theirs for a time and keep them company. And, if need be, offer to sit with them and allow them to talk about that burden as they are forced to readjust that load. Your compassionate companionship and your empathetic ear will mean a lot as they ready themselves to pick up their backpack of burdens and resume their journey of life.

I'm Gonna Love You Like I'm Gonna Lose You

If you’ve known any of us Edfeldts for a while you know we love our music. And it encompasses a wide variety of styles. Some of us like instrumental jazz, some like classical, some like Christian, some like top 40,  a few of us like a little bit of country  while others like a little bit of rock and roll (my apologies to Donnie and Marie Osmond) and all of us like musical theater. 

Well,  there are some words to a recently top of the charts hit that were written for a different purpose but I feel they are very poignant on this day when my family recognizes that it was eight years ago that Jacob lost his lifelong battle with defective heart issues.

Meghan Trainor wrote a song titled “Like I’m Going to Lose You” after she had a nightmare that involved sensing that loved one of hers had died.  She woke up in a cold sweat and quickly reached out to touch that loved one and to be reassured as she heard the voice of that person. Then she penned these moving words:

I found myself dreaming ; In silver and gold
Like a scene from a movie; That every broken heart knows

we were walking on moonlight; And you pulled me close
Split second and you disappeared and then I was all alone

I woke up in tears; With you by my side
A breath of relief
And I realized; No, we're not promised tomorrow

So I'm gonna love you; Like I'm gonna lose you
I'm gonna hold you; Like I'm saying goodbye wherever we're standing
I won't take you for granted 'cause we'll never know when; When we'll run out of time

So I'm gonna love you; Like I'm gonna lose you
I'm gonna love you like I'm gonna lose you

In the blink of an eye; Just a whisper of smoke
You could lose everything; The truth is you never know

Let's take our time; To say what we want
Use what we got; Before it's all gone
'Cause no, we're not promised tomorrow

So I'm gonna love you; Like I'm gonna lose you
I'm gonna hold you; Like I'm saying goodbye wherever we're standing
I won't take you for granted 'cause we'll never know when; When we'll run out of time

so I'm gonna love you; Like I'm gonna lose you
I'm gonna love you like I'm gonna lose you

Fortunately, for Meghan Trainor it was a nightmare that she was able to wake up from.  But on June 14, 2009, our nightmare was realized and it goes on to this day.  In the eight years since Jacob died, we have made adjustments to become somewhat accustomed to living this nightmare. But we know that we won’t be able to wake up and reach out and touch Jacob again nor to hear his gravelly but sweet voice.

So we want to urge you to take the song’s words to heart. To those that you love, let them know of your love daily and don’t take it for granted that you can tell them tomorrow. Spend time talking to them and always end it with “I love you”. Do things together – things you like and things they like. Kiss them a little longer and more often.  Reach for their hand and hold it for no other reason than it may not be there to hold tomorrow. Hug them a little tighter and whisper in their ear, “I love you” because Karen and I can tell you …

.… we wish we could do so with Jacob today.