Chronology of a Nightmare

• December 5, 2013 - After a long night of excruciating pain, Jennifer (my wife) learns that she is going to require high-risk surgery in the ensuing weeks (her 16th abdominal surgery since we've been married)
• December 6, 2013 - Jennifer's birthday
• December 11, 2013 - Jacob (our 8 year old son) seems ill with flu-like symptoms and stays home from school
• December 12, 2013 - Jacob suffers a massive stroke
• December 14, 2013 - Jacob is rushed into surgery for an emergency crainiectomy to relieve some of the pressure on his brainstem being caused by the swelling in his brain
• December 15, 2013 (morning) - We are informed that Jacob's stroke has now spread to the entire left hemisphere of his brain and that his brainstem is also being damaged
• December 15, 2013 (evening) - Our beautiful little boy dies in his mother's arms
• December 19, 2013 - Jacob's funeral
• December 20, 2013 - The U.S. Department of State publishes an alert on their website (http://adoption.state.gov) announcing that the Democratic Republic of Congo (or more specifically, the Congolese Minister of Justice, Minister of Interior and Security, and the General Direction of Migration (DGM)) intended to continue the suspension on exit permits for adopted Congolese children seeking to depart the country with their adoptive parents.  This meant that although a portion of the DRC government had declared Joseph and Bronson legally ours months earlier, another portion of the government would not allow them to leave the country.  The announcement went on to state that the DRC did not intend to lift the suspension for at least a year.
• December 25, 2013 - Christmas Day.  Joseph's "faith" that he will be home with us before Christmas (as expressed in his letter to his "Mum") is unrewarded.  Instead of giving Joseph and Bronson fun presents to open, we are simply left to hope that they have food to eat today. Rather than seeing Jacob's face light up at the sight of his Christmas presents, we deliver them to his grave.
• January 1, 2014 - We do the best we can to "welcome" the New Year
• January 2, 2014 - We meet with the specialist surgeon that Jennifer's regular doctor/surgeon referred us to in order to discuss her needed surgery.  (Her regular surgeon indicated that the risk and complexity of her case were beyond his skill set and referred her to a surgeon who is the head of his department at Huntsman.)
• January 6, 2014 - We meet with an additional specialist surgeon (referred by the doctor at Huntsman) who is going to assist with Jennifer's surgery by performing the laparotomy and dealing with the complications associated with her surgical history
• January 30, 2014 (afternoon) - I kiss Jennifer goodbye as she is wheeled back into surgery--surrounded by the all-too-familiar smells, sights, and sounds that accompanied Jacob when he was wheeled back for his surgery the previous month (the moment that would prove to be the last time that we would ever hear our son speak to us in this lifetime).  As soon as Jennifer is wheeled out of sight, I quickly make my way to a bathroom, lock myself in, and crumple in a balling mess.
• January 30, 2014 (evening) - I standby watching helplessly as my wife cries out in pain for hour after terrible hour.  For nearly seven hours, medical professionals attempt to get her pain and nausea under control with medications that her body is completely unresponsive to.

I have come to accept the reality that I am never going to wake up and discover that Jacob's death was just a horrible nightmare. But even if I can't undo what I have already experienced or make it all go away, I would certainly like my storyline to have a little more "Sandman" and a little less "Pitch Black".

Alma 34:26

December 15, 2013.  4:30 AM.
"Wake up...Daddy, you have to go now."
Frantic.  Confused.  Helpless. 
In my closet.  In my wilderness...

"Need You Now (How Many Times)"

by Plumb

Well, everybody's got a story to tell.
And everybody's got a wound to be healed.
I want to believe there's beauty here..
'Cause oh, I get so tired of holding on.
I can't let go, I can't move on.
I want to believe there's meaning here.

How many times have you heard me cry out,
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh, I need you.
God, I need you now!

Standing on a road I didn't plan...
Wondering how I got to where I am.
I'm trying to hear that still small voice.
I'm trying to hear above the noise.

How many times have you heard me cry out,
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh, I need you.
God, I need you now!

Though I walk...
Though I walk through the shadows...
And I, I am so afraid...
Please stay, please stay right beside me
With every single step I take.

How many times have you heard me cry out?
And how many times have you given me strength?

How many times have you heard me cry out,
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh, I need you.
God, I need you now!

I need you now.
Oh, I need you.
God, I need you now!
I need you now.
I need you now.

Sometimes Misery Doesn't Love Company

Matthew 14: 12 – 13

12:  And his disciples came, and took up the body, and buried it, and went and told Jesus [that his cousin, John the Baptist, had been killed].

13:  When Jesus heard of it, he departed thence by ship into a desert place apart….

It seems as though Jesus just wanted to be alone for a little while and grieve.

If that is the case...if the Son of God who understood the Plan of Salvation better than any of us ever will just wanted some solitude to grieve over the temporary loss of His cousin, then I suppose it is okay that I sometimes just want to go into my "desert place apart" and grieve over the loss of my son.

Sometimes misery just isn't interested in company.

Sunday Will Come

"Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays."

"But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come."

"No matter our desperation, no matter our grief, Sunday will come."

- Joseph B. Wirthlin
 ("Sunday Will Come", October 2006 General Conference)

Crood Comments

As part of Jeffrey's "birthdate date", we (Jeffrey, Jennifer, and I) watched The Croods in a large private theater room at the hotel.  It was so nice to spend time with Jeffrey doing things that made him happy.

I had previously seen The Croods several times.  However, this time I heard profound words, insights, and wisdom that I hadn’t caught before…

“But this is a story about how all that changed in an instant. Because what we didn't know was that our world was about to come to an end.   And there were no rules on our cave walls to prepare us for that.” – Eep

“What's the point of all this? To follow the light.” –Grug

Anytime, anywhere,
Turn around and I'll be there,
To shine, shine your way.

Like a star burning bright,
Lighting up the darkest night,
I'll shine, shine your way.

Now I can see,
You are the one,
Sent here to show me the way…
Starting today,
Shine, shine, shine.
We're on our way.
Shine, shine, shine,
That's what we say.
Shine, shine, shine,
Shine your way.

There's a reason why
You shine, shine your way.

All of our tears will dry faster in the sun.
Shine your way.

(excerpt from the ending credits, "Shine Your Way", by Owl City)

Tear Soup

My wife was recently given a book by a dear friend of ours. The title of the book is Tear Soup and we read that book tonight as a family. It is written as a children's book, but I don't think that the target audience is children per se. I think that it was written as a children’s book because that is the type of literature that an individual can process while in this state.

It is an absolutely wonderful book for those who are grieving. It provides validation and permission on so many different levels.

I am grateful for the authors who wrote it. I am grateful for the medium that they chose, the insights that they possess, and the manner in which they conveyed their wisdom. I am grateful for the friend who gave it to my wife. I am grateful that my wife chose to read it together as a family tonight. Most of all, I am grateful for my wife (who read the book to us) and my children (who shared their thoughts, feelings, challenges, and emotions with us after hearing the story).

Days of Darkness

I have debated on whether or not I should record the dark and despairing thoughts that I have been plagued with in the days since Jacob’s death.  Although I want to avoid dwelling on such thoughts and emotions, I think that I should include some mention of them here.  I want to do so for two reasons:

One—to remind myself at a later date that I know what darkness is, and that I have successfully passed through it before (assuming that I do, by the grace of God, navigate my way through this).

Two—to help me be grateful for God’s help in surviving this. 

So with that background, I will share with you a little about the struggle…

I know that God lives.  I love the Savior.  I have a tremendous and ever-increasing appreciation for the Atonement.  I have faith in God’s plan and believe that the Gospel provides the only path to lasting happiness.  I believe that families can be together forever through God’s covenant blessings.  I am immeasurably grateful for my amazing wife and each and every one of our beautiful children.  I have been blessed with loving family members that willingly sacrifice their time, money, and comfort in order to serve us.  I am eternally grateful for the exceptional people that God has placed in my life—selfless people who love and strengthen and even carry me on occasion. 

Still…

Sometimes the darkness is so heavy that I find it difficult to breathe.  Getting out of bed and taking a shower seem like herculean tasks.  I have anxiety about being sleepy (because it increases the fogginess in my mind), but I fear going to sleep because of the endless nightmares. 

It is hard to envision ever being truly happy again in this life.  Jennifer (my wife) and I used to plan dates, holidays, vacations, getaways, and other exciting events in an effort to ensure that we always had “something genuinely fun to look forward to”.  We have always believed that the anticipation of such events helped us trudge through the grind of our daily responsibilities.  Since Jacob passed, however, I find that I dread “fun” events.  Laughter and fun just make it more obvious that Jacob is missing.  Activities that he would enjoy fill me with guilt, and sorrow, and an overwhelming sense of loss.

People want to tell me things that will make everything okay…”He’s in a better place.”  “Families are forever.”  “You’ll be with him again someday.”  “He’s celestial now.”  “You’ll get to raise him after the resurrection.”  “You’ll make it through this.”

I know they mean well, and they are trying to bind my wounds.  However, in my mind the responses tumble back quickly…

“I didn’t think that our home was that bad of a place.  Jacob seemed happy there.  And if he wasn’t happy with us…why should that make me feel better?”

“Families can be together forever.  But we aren’t together right now—and that hurts more than I can begin to express.”

“I hope to be worthy to be with him again someday.  However, someday could be 40 or 50 years away, and that doesn’t help much when hours often feel unbearable.”

“He is celestial now.  But please understand—my unconditionally loving, instantly forgiving, light-bearing little boy was celestial before he left.  That is part of what makes his death so excruciating.  In addition to losing our son, we lost a piece of Heaven that resided within our home.  I know that such a blessing is rare and that I certainly didn’t deserve it, but that knowledge doesn’t make living without it any easier now that I have experienced it.”

“I am grateful for the gift of the resurrection and the knowledge that I may one day have the opportunity to raise Jacob to manhood.  That doesn’t change the fact that Michael (Jacob’s brother who also has Trisomy 21) will have to grow up without Jacob.  Jennifer and I had always taken comfort in the fact that Jacob and Michael would have each other as companions throughout their lives—someone to play toys with when they were 30 years old and someone to provide them day-to-day companionship when Jennifer and I pass away.  Additionally, I fear that Jacob’s resurrected body won’t be gifted with Trisomy 21—something that gave him many of the traits that are near and dear to my heart.  I also imagine that he will no longer have his nystagmus—a characteristic that absolutely melted my heart when he would hold my cheeks and gaze into my eyes.  I anticipated being blessed with those traits for decades, not years.  Losing them equates to loss, and that loss carries with it tremendous pain.”

“I probably will make it through this.  However, I am not ‘through’ this right now.  I am in this. And from my current vantage point, I will be in this for a very, very, very long time.”

I don’t mean to imply that no one ever says anything to ease our pain or make things a little better.  It is simply impossible for them to make “everything okay” with a few words (or even many words).  The Gospel doesn’t promise us freedom from sorrow or pain—certainly not in this life anyway.  In fact, we know that there has to be opposition in all things—bitterness so that we can recognize the sweet.  Unfortunately, doctrinal knowledge, faith, and even love will not provide us immunity against suffering.  They may speed healing to some extent, but they don’t make us invincible or make healing instantaneous.

I am hopeful that with God’s help the darkness that I am currently battling will eventually be put “into remission”.  Right now, however, it seems to have matasticized.  The darkness and pain are no longer weighing on me—they seem to have become part of me.

I remind myself, though—Jesus healed lepers.  He cast out evil spirits.  He cured the woman with the issue of blood.

Therefore, I stand back and fight with what strength I have, eagerly anticipating the day when my heart ache is healed, when this darkness is cast from me, and when I am cured from the debilitating sorrow that has taken over my life.

Jeffrey's Day

I don’t have insight to offer from today—just gratitude—gratitude for my wonderful family.  And on this special day, I am particularly grateful for my sweet son, Jeffrey.  It is his birthday today!

Jeffrey is still wonderfully little.  That time is passing quickly, however.  I need to work harder to take it in while I can.  He is also very loving toward me and his mother.  He has no qualms about giving me kisses or holding my hand in public.  His love helps me find self-worth, and his smiles help cut through the darkness.  He is smart and handsome and talented.  Perhaps most importantly, he is mine and I am his, and  I love him more than I can say.

I am also particularly grateful for my wife—the most amazing woman that I have ever met or will ever meet.   The list of reasons why I am eternally grateful for her is far too numerous to count.  However, today I am especially grateful for her unwavering dedication to providing for our children.  Despite the intense burdens that she is currently bearing (due to Jacob’s passing and her own health struggles), she still managed to put together a wonderful birthday party for our son.  She is astounding.

My wife has shown me by example that determination born of love can be stronger than despair born of loss.

Nevertheless, I can’t begin to describe how hard it was watching Jeffrey blow out the candles on his cake today without any assistance or any “encores” by Cub.

A Wonderful Mistake

God has blessed me multiple times through experiences that were seemingly adding to my burden, but which were in reality helping to make my burden lighter.  The most memorable and profound of those experiences is probably my encounter with "the worms".

Today I had another such experience.  I am largely buckling beneath the weight of my grief right now.  The simplest of activities is daunting.  I have neither the energy, nor the mental capacity to deal with them right now.

It was in this setting that my wife informed me of the mountain of tasks that my son, Jeffrey, needed to accomplish within the next two days for Cub Scouts.  Although my wife had been working with him on the various activities, he had not yet completed the requirements for earning his "Bear" patch.  Unfortunately, the deadline for him to do so is before his tenth birthday later this week.

So, Jeffrey and I began the seemingly herculean task of completing his requirements.  We learned about various carpentry and mechanic’s tools, built a birdfeeder, discussed bicycle repair/maintenance, read entries in his scout book, and completed several other activities.  It was then that Jennifer discovered that we only had to complete a subset of the assignments in the scout book for him to earn his “Bear” patch.  He had essentially been finished before we even started working on it today!

At first blush, the incident may seem like a frustrating one.  Spending the day jumping through hoops to complete the requirements for a scout badge certainly wasn’t what I had planned.  To be honest, all I really wanted to do was sleep and try to escape the reality of the darkness that has enveloped me.

However, God, in His infinite wisdom, blessed me with a far greater antidote for the darkness that is plaguing my soul: I was blessed to spend the afternoon with my sweet Jeffrey.  What appeared on the surface to be a frustrating mistake was, in fact, a tremendous balm and a blessing.  Working on birdfeeders and bicycles seemed like nearly impossible assignments given my current mental and emotional state.  However, spending the afternoon with Jeffrey—working and talking together—was a strangely comforting and uplifting experience. 

I love Jeffrey so much and am so thankful for my wife and all of my children.  They are the lighthouses that God has given me to light the way through the darkness I now find myself in.  They are my “birdfeeders”—providing me with nourishment to make it through the frozen winter that has settled on my world.

An Angel in Disguise

I am fairly confident that L.H. is an angel in disguise.

L.H. is an incredibly sweet old man who walks with a walker and relies on a forearm crutch for balance when standing without his walker.  He is a U.S. war veteran, but has a mild demeanor that reminds one more of Santa Claus than a seasoned soldier.  He also happens to be homeless.
I have had the privilege of meeting L.H. two times in my life.  My wife has seen him an additional time or two.  We’ve spoken about him at length after each encounter with him.

When I first met L.H. he was struggling to pick up trash in the bushes of a Wal-Mart parking lot.  When I inquired about what he was doing, he informed me that he had been asking for assistance earlier that day (i.e. standing with a cardboard sign that explained his neurological condition and asking for any assistance that people were willing to provide).  He went on to say that he felt badly about getting something for nothing, so he was picking up the trash in the bushes in an effort to serve Wal-Mart for allowing him to stand there earlier that day.

I don’t remember much about that first encounter with L.H. other than being struck by what a kindly, genuine individual he was.  I am not sure how long it’s been since that first meeting.  I would guess that it was 18 months ago or so. 

I saw L.H. again as we pulled into the Wal-Mart parking lot Friday night.  For some reason, his presence brought me some sense of excitement, or perhaps it was a tinge of joy.  I wasn’t pleased to see that he was out in the cold, but I was distinctly pleased to see him.

I was blessed with the opportunity to speak with L.H. for a little while.  He shared some information with me about his current circumstances.  He also told me a little about the stroke he had experienced and how that had affected his right arm and leg.  Then L.H. shared a story with me about a recent situation in which people were very cruel to him when he was already in a very difficult circumstance. 

However, L.H. didn’t tell me this story to focus on his challenges or the cruelty of others.  He said that he shared the story with me to help learn “wisdom” (his word).  He said that although he had undergone a terrible experience, he had learned that he needed to focus on the good things in his life in order to keep the “demons” from getting in his head.  L.H. said that God had blessed him and that he had many good things that he could focus on when things were overwhelmingly sad or frustrating.  He then urged me to do the same.  He said that he wasn’t counseling me to “count my blessings” or anything like that.  He stated that he had simply learned that the devil can’t overpower your mind when you force yourself to think about good things that God has blessed you with.

L.H. shared the above counsel with me before I ever told him about Jacob’s death and the struggle that my wife and I are enduring.  His counsel seemed so timely that I had to thank him for it and share with him about the recent loss of our son.  I now wish that I had just thanked him for his wisdom because he seemed very upset by the news about our son.  He was very kind and consoling however. 

Isn’t that ironic?  L.H. is homeless, partially crippled, and standing in the cold begging for assistance, but HE was offering ME consolation and kindness. 

Before I left, I hugged L.H. a couple of times and promised to share his counsel with my wife.  I also thanked him sincerely for his kindness and insight.  What he gave me dwarfed what token assistance I was able to offer him.  I also told him that we loved him—because we do.

Once again, I am fairly confident that L.H. is an angel in disguise.

Remembering

Our family is big on traditions.  We have traditions for most every holiday.  In addition to a long list of activities and decorations, most of those traditions involve food.  On April 1st, my wife makes a “prank” meal for the family.  On St. Patrick’s Day, our meal is always green and/or involves traditional Irish foods such as corned beef and Irish soda bread.   (St. Patrick’s Day happens to be the day that Jacob came home to our family nearly three years ago.)  On Christmas Eve, we have a large feast.  New Year’s Eve, we go out for an early celebratory dinner, and then set out a buffet of chips, cheeses, crackers, sodas, juices, and desserts upon returning home.

Although Jennifer and I didn’t feel up to most of our annual New Year’s traditions such as the family “dance party” or banging pans at the stroke of midnight, we wanted to provide our children with some of the traditions that they were expecting.  So, on New Year’s Eve we all piled into the Suburban (which now has a disturbing amount of extra space), and left in search of a restaurant at which to eat our annual celebratory dinner.

We had only been driving for a short while when my wife mentioned that she recalled a general authority giving a talk in a recent General Conference about having lost his child to an early death.  I had a vague memory of such a talk—so vague, in fact, that I wasn’t sure if I truly remembered there being such a talk or if it was simply the power of suggestion.  I used my phone to search the Internet, and was able to locate the talk that Jennifer was referring to:  Elder Shayne M. Bowen gave a talk in the October 2012 Conference in which he relayed the tragic death of his eight month old son.  The message was entitled, “Because I Live, Ye Shall Live Also”.

Jennifer asked that I play the talk from my phone so that we could listen to it on the way to the restaurant.  I started playing the video recording of the talk, but it soon froze.  I tried playing just the audio download, but I ran into similar technical difficulties.  Finally, Jennifer asked me to just read the transcript of the talk.  I commented that I wasn’t sure if I could read such a talk aloud, but that I would try.

I won’t pretend for even a moment that I was able to make it through the talk without crying.  My emotions are far too raw and uncontained for me to maintain composure while talking about the death of a child.  However, my voice cracked and the tears came due to something more than the gut-wrenching sorrow that has become my constant companion.  As I read the talk, I was overcome with emotions that stretched beyond my all-too-familiar grief.  I felt some sense of relief in knowing that others who had lost a child had experienced the same unexpected thoughts and struggles I am now enduring.  I felt hope that I may learn to manage my destructive thoughts and depression.  Most importantly, I felt love and appreciation for the Savior and His atonement.

I was very grateful to my wife for directing me to Elder Bowen’s talk.  I asked her if someone had mentioned it to her or how she had remembered it.  She indicated that none of her friends, family or acquaintances had referred her to the talk.  She had simply remembered it while driving—although that was a unique feat because both she and I are having trouble remembering much of anything right now.  She mentioned being surprised that she had remembered the talk because she “didn’t know she knew it”.  Jennifer went on to refer to the scripture in John about the Holy Ghost helping us to remember the Savior’s words when we would need them:

“But the Comforter, which is the Holy Ghost, whom the Father will send in my name, he shall teach you all things, and bring all things to your remembrance, whatsoever I have said unto you.” (John 14:26)

I thank God for my sweet wife who is traversing this horrible darkness at my side, experiencing even more pain than I know, but who is still somehow able to receive communication from Heaven. 

On the way back home, we stopped by the cemetery for what I imagine will be a new New Year’s tradition—visiting Jacob as a family.  Everyone spoke to Jacob—not knowing if he could hear us, but desperately hoping that our messages of love would somehow be conveyed to him.

At midnight, we didn’t bang pots and pans through the house to escort out the old year and usher in the new one.  Instead, we went from room to room collecting 2013 in pillow cases and then stepped out on the back porch to release it and blow it along with kisses to our sweet Jacob.  I wasn’t able to release 2013 from my pillow case.  I tied a knot in the top of it.  I want to keep every trace, every second, every tiny memory from the last year that I had with my perfect son.

I am thankful for traditions that help us to remember the joyful holidays of years gone by.  I am thankful for the Holy Ghost that helps us to remember Christ’s words when we feel far from Him.  I am deeply thankful for my eternal companion who is able to remember the Savior’s words and who singularly shares nearly all of my most precious memories.  I am also unspeakably grateful for the wonderful memories that I have of my sweet little boy, even if remembering him is accompanied by equal measures of pain and joy.