No ribbons or pins for those who die of unknown causes

I have a friend, a former co-worker, who is a breast cancer survivor. She made a wonderful video talking about the experience, how she determined not to let cancer be the boss, and trusted in God throughout the treatment process. She also talked about all the wonderful support she has received – people to support her and rewards for making it through treatments. I am happy for her and glad people with breast cancer have such a vibrant and helpful support system around them.

But I also had another thought: I am going through something worse than breast cancer. I would have chosen cancer over the death of my son any day. I would have chosen my own death over his. It’s not that I want cancer – I most certainly do not. I dislike suffering of any kind. But given the choice between what occurred and cancer, I would have chosen cancer without hesitation. I can’t imagine the suffering would be greater, although it is suffering of a different kind. I would take physical suffering over spiritual and emotional suffering any day.

There are no bumper stickers for parents who have lost a child, no 5K fundraisers, no colored ribbons or necklaces or cute enamel pins. Actually, I think there are ribbons and support groups for people who have children with cancer – which is good. There are groups for people who lost children through drunk driving and probably for suicide victims. If these kinds of groups are helpful then that is a very good thing. People who have lost a child for any reason need all the help, love, and support they can get. But if you have lost a child for no apparent reason, if your child has just slipped away, fallen through the cracks, didn’t have a well-known disease or any disease that you know of, if your problem is just plain death and loss, you are mostly on your own.

I don’t say this to complain and I so appreciate the friends and family who have been truly loving and supportive. I have hardly been entirely on my own. And it’s not that colored ribbons or buttons or 5K runs would make me feel a bit better about Jesse dying. You can’t really collect money to cure deaths that happen for no known reason. It’s just a thought I had and this blog is to get these thoughts out of my head.  I know there is a group called Compassionate Friends for people who have lost a child, and if I can find a group that meets when I can go, I might try it.

It makes me think, “Well then, what would make me feel better?” Jesse coming back to me, that’s what. Or getting to go where he is and see him, maybe just to visit. Or getting to stay there. And I do have hope and belief that I will get to go where he is and stay there soon enough. Also, if I knew for sure that God had a really good reason for Jesse’s early death and is somehow using it for a good purpose, a purpose so good that it was worth the life of my son. That might help a little.

Paperwork, not knowing, and the holidays are coming

Feeling freaked out and scared and tired of trying to be positive and strong. We have not yet received a final death certificate and both insurance companies are “following up” and asking why I have not “provided the documentation they requested” and the funeral home is asking if we can pay more out of pocket since it is taking so long to get the insurance payment. The funeral home did a wonderful job and they deserve to get paid. It was quite an event. I was really hoping the next hugely expensive event in our lives would be a wedding, perhaps Jesse’s wedding, and not a funeral, but it is what it is and people need to be paid for their services. I really became aware of how needed the services of a professional funeral home are when the time comes.

But Jesse Jesse – why did this happen? Just a clue from the medical examiner would be so helpful. Maybe even a hint as to why it is taking so long to get results. All our guesses are just guesses, some of them wild guesses. It could be something really bad like someone slipped him so bad opium the night before or it could be something else really bad like his prescription medication mixed lethally with something else almost as bad like a brain aneurism or a heart defect or an infection that got to his heart. All of these things are nightmares that I would have done anything to prevent happening to my son, but I want to know which nightmare it was. I see these guesses as a deck of cards that I have to keep shuffling and drawing in my mind. If I knew the cause I would have deal with only one card and throw the rest of the wretched deck in the trash.  It might be they can’t determine the cause. I think I could find peace with that card. I would just see it as the card that says God decided it was time to bring him home.

Also I am feeling the stress of the holidays coming on. I am usually stressed at holidays but now even the thought of Christmas brings me to tears. What will I do when they start playing Christmas music in all the stores? I guess I should be happy Jesse is spending this Christmas in Heaven with the one whose birth we celebrate, and I will try to be happy about that, but my throat is as tight as a bowstring as I write this and my face feels like it is going to explode with grief. And I just miss Jesse and wish he were here and I was getting ready to buy him Christmas and birthday presents  and paying college tuition instead of funeral expenses.

christmas-with-aaron
Christmas morning with Aaron. Christmas 2002 (I think).

For Jesse’s birthday, December 10th, I am thinking of having some kind of gathering for friends and family – a dinner, a potluck maybe, and then go out the grave with some candles with whoever wants to come and say a few words and perhaps lay a Christmas wreath on the grave. My appointment with the psychotherapist last week was cancelled due to the flood and has not been rescheduled. I may still go through with trying to meet with her but have doubts that it will do a bit of good. Christmas will still come and Jesse will not be here for it. I don’t think anyone but God can help me with that.

The two-month mark

Two months ago today I found out my son had died. I don’t know if it is this anniversary or the fact that it is a dreary rainy day when it should be a sunny autumn day or if it is just another sad day like each of the last 60 days, but today I am unbearably sad. I cannot reason myself out of it and today even prayer hardly makes a dent in this dark night of my soul.

img_0240Jesse is in heaven – I have no doubt of that. God has a purpose that will be clearer to me some day. I am sure of that. I will see Him again, and mourning will be to turned to joy. Yes I am sure of that too. But today, in this moment, my precious baby, the one I gave my heart and soul to, the warm little boy I held so many nights, who I read to and laughed with and labored over homework with, who I drove to school so many rushed mornings, for whom I screamed “Go Jesse!” at so many track meets, is dead. That my son, a young man with so much promise and so many ideas and plans, should have died for no apparent reason is still incomprehensible.

Many friends have reached out to comfort me these two months, and I have appreciated every one of them.  And our talks and lunches have helped, and I am profoundly touched by anyone whom has made the least attempt to offer comfort. It is not an easy thing to do. If there is anything this life is about it is offering love and comfort to people who need it and right now I need it. I hope to be able to do the same for someone else at some point.

I try to cheer myself up by thinking of ways, even the simplest ways, I can make the rest of my life mean something. Even if the rest of my life were not going to be very long, I’d want the minutes and hours to be as full and meaningful as they could be. Aaron and I have decided to start trying to cook Indian food and I have bought our basic starter spices. We made chana masala last night with mixed results. Little things.

The problem is the life seemed to be sucked out of me. The things that so recently were important to me like improving my art and writing good essays and stories seem very near devoid of meaning now. I have tried to draw a little but the spirit for it is not there. I am able to write  but only about Jesse and grief. My other blogs are sadly neglected.

In half-hearted anticipation that I might want to eventually start anew, I am thinking of approaching The College of William and Mary and asking if it would be in the realm of possibility to finish my Masters degree. I did all the coursework before Jesse was born. That gives you an idea of how long ago it was. But they still have the transcript with my 3.8 GPA and maybe they would consider that I have continued my literature studies all my life and let me take the comprehensive exam or write the thesis to get the Masters. Can’t hurt to ask I suppose.

I have also ordered a whole bunch of books on tutoring reading and writing. I am somewhat qualified for this kind of work. I did teach Jesse to read when he was in first grade and I homeschooled Aaron for 8th, 11th, and 12th grade. Also long ago I did some tutoring. I don’t think I’d want to do classroom teaching but working one-on-one might be a way I can do something meaningful. The ache in my heart should not stop me from doing what I can with my life. I don’t think I could do any of this right this minute because I still keep crying at inopportune moments and I don’t want to make people sad or uncomfortable. But maybe someday. And I can at least start preparing for that someday.

These verses, Colossians 3:23-24, have been seeping into my mind today: “And whatsoever you do, do it heartily, as to the Lord, and not unto men; knowing that of the Lord you shall receive the reward of the inheritance: for you serve the Lord Christ.”

I understand the need to do things as unto the Lord and totally want to do that. It’s the “heartily” part I am having trouble mustering right now.

The week before….

One day this past week I could not stop thinking “I should have known. Something must have been wrong. I should have seen.” Which day was that? It doesn’t matter because I have this same day again and again. I have other kinds of days too. The “Jesse would want me to be happy” kind of day is one of the better ones. But every so often the “I should have known” day rolls around. What should I have known? I don’t know exactly but my mind says, “I should have been quicker or more observant. There must have been signs and I was not quick enough or observant enough to see them.”

Just for the record, it is now two months after the event and we still do not have a cause of death. We have lots of maddening conjectures and theories but we really don’t know anything except that my son went to bed one night and did not wake up. He had some prescription medications. No other drugs were found in his room.

The previous Sunday, July 31st, I experienced a very intense and horrible premonition. I have gone over that day in my mind a hundred times, and I have told the story to several people who, bless their hearts, have listened sympathetically. But I need to write it down. Maybe that way I will begin to get it out of my system. I feel like there is a clue in that day that I am missing. Here’s what happened Sunday July 31st, one week before Jesse died:

He always came over for Sunday dinner because Sunday was his only day off from work. He also was in the habit of sleeping most of the day Sunday, “to catch up.”  All his life, literally from birth, Jesse had sleep problems – problems getting to sleep and problems waking up. I talked to his pediatrician about it when he was little. I got lot of advice. One suggestion was when all else fails, there’s always Benadryl. I may have resorted to that once or twice, but did not like to depend of drugs to get him to sleep. As he got older he developed coping mechanisms to deal with his sleep issues, but it was always a struggle, especially school mornings. With 20/20 hindsight I now wish I had thought to have a sleep study done.

That Sunday morning I texted Jesse about dinner plans, as I always did. I didn’t get a response. Later I called, but he didn’t answer the phone. I tried texting and calling periodically throughout the day, becoming increasingly concerned. By the time he was supposed to be at our house for dinner I felt panic rising, an ominous feeling that things were not right. Just before 7 pm, I decided to drive to his apartment at Churchland Square, about 20 minutes from our house, thinking I might even pass him on the way. When I got to the apartment I saw his car in the parking lot. It was pouring rain that night, one of those Biblical deluges we keep getting around here. I banged on his apartment door.

He lived on the second floor and the outer door opened to a staircase leading to the inner door, so I don’t know how he would ever hear anyone knocking on that door. No one knocks anymore anyway. You just text that you are at the door. But I had already done that and called too and had gotten no answer. All my texts and phones calls seemed to be getting swallowed by black hole of silence. Then I sat in my car for 30 minutes in tears. “Dear Lord,” I prayed, “I just want to know that he’s okay. Just let me see that he’s okay. That’s all I ask.” I had never felt such a sense of fear before and had never prayed so hard and so directly in my life. Tom called and said I should just come home. Dinner was getting cold and anyway Jesse’s roommate would be home soon and he said he would check on him and call us.

A few minutes later Jesse’s roommate Kyle called Aaron, who was on a camping trip, and Aaron called Tom to tell him Kyle said Jesse was sleeping. It seemed a long chain to go through to get information, and I still didn’t feel sure all was well. Around 8:00 Jesse finally called. He said he was sorry, he just overslept. He would be over shortly. I collapsed into a chair in utter relief. “Thank you God!” I said. Everything was fine. I was just crazy. Thank God it was just me being crazy.

A little while later Jesse came over and when I saw him standing in the doorway I felt that same gush of grateful desperate relief I had been feeling all year every time I saw him, except this time more so. I told him I had been worried but didn’t tell him how worried. After all, my worry, I thought, was an unreasonable overreaction. Jesse was a healthy young adult after all. He had just had a thorough checkup in July.

“Jesse,” I said, “Did you take any substance that might have made you sleep extra hard?” “All I took was half a five-milligram melatonin,” he said. “I always sleep hard and I turn my phone off when I’m sleeping.” I felt relieved all over again and let myself be reassured. Then he sat down and we had a long pleasant conversation about this and that – work, his plans for taking online classes, his new campaign for Portsmouth mayor (a little shocking), and things going on in downtown Portsmouth. He showed us the mayor website his friend at work had just created. He seemed happy and enjoying his life.

Before he left he asked to borrow $100. Since moving out on his own a little more than a year ago, he had never asked to borrow money before and seemed a little uncomfortable about it. His rent, he said, was higher than usual for some reason, maybe because they had gone on a month-to-month lease recently. I gave him $150 and he said he’d pay it back on payday. I said we always help each other when we can and suggested he consider moving back home for a few months to save some money, especially if he was going back to school. He got a strange look in his eye – surprised and, I think, kind of pleased. “I’ll think about that,” he said. Tom said if he ever got short on money not to skimp on food because he could always come to us for help if he needed it. “You’re looking a little thin,” he said.

I spent that week doing the usual things, feeling good about life. A couple times I drove by Shiny Computers on my home from work and saw his car in the parking lot. All was well. Thursday, August 4th, I texted him that we were planning a trip to see his aunt and uncle in the mountains the weekend of the 26th if he wanted to come. He texted back that he’d see if he could get off work that weekend. That was the last time I heard from my son on this earth.

Sunday morning, August 7th, I texted him about dinner plans and did not get a reply. I texted and called several times throughout the day. “We’re having a repeat of last week,” I thought. But every time I started to feel the panic rising I would take a breath and calm myself, remembering how last week I had gotten myself all in a tizzy for nothing.

Tom grilled burgers and he, Aaron, and I sat down for dinner. Jesse didn’t show up. “Should I go over there?” I thought. “No,” I decided. He is an adult. He overslept again. But by the next morning I had not heard from him, and I knew in my heart something was wrong. Later that morning, while I was at work, I called Shiny Computers. The guy who answered said, “Jesse’s around here somewhere. I’ll have him call ya.” Then I “heard” the words – the silent but clear voice that seemed to come from my chest. “Carol,” said the voice. “It was time for him to go home.” The tone was compassionate but firm. My body reacted by melting into a quivering gelatinous mess. My mind went numb to the words.

I called Tom but didn’t tell him about the voice. “I’m going over to Shiny Computers right now,” I said. “I have not heard from Jesse and I need to see him.” Tom said he was heading that way anyway so he would go there and call me as soon as he got there. Thirty minutes later he called. “Jesse never showed up for work today,” he said. “I’m heading over to his apartment.” I was shaking. My body already knew what my mind was denying. A few minutes later the phone rang again and I got the news. That was the single most awful moment of my life. It plays over and over in my head. “Carol (ragged breath), Jesse is dead….” How does one take that in? I had heard that voice – “Carol it was time for him to go home” and this was the confirmation.

………….

It is now two months later and I know it is not fair to Aaron to have a miserable mother. Aaron fills my heart with joy, just like Jesse always did, and I am so grateful for him. He is a wonderful, compassionate, resourceful, talented young man. But we are all sad. I feel the loss of Jesse as a crushing weight. I am quite functional, going about my life, working, writing, cooking, cleaning, only with a leaden weight in my chest that frequently swells and sends stabbing pains all over my body. I have read several books and blogs on grieving and losing a child but I can’t read them long. The gist seems to be that people do not recover from this kind of loss. Five, fifteen, twenty years later they are still sad and a lot of times their lives and families are impacted negatively.

These books are depressing. Most of them will say, rather weakly, that there can be some recovery, a “new normal”, a new way to live with some sense of happiness. One book (Beyond Endurance: When a Child Dies by Ronald J. Knapp, PhD) says that the death of a child is much like a diagnosis of terminal illness. Well that’s a cheery thought. Most experts define a “child” as a young person into the early twenties, but I imagine the trauma is the same for parents who outlive a child of any age.  I have about decided that these books are just not helpful to me.

On the hopeful side, I have an appointment with a psychotherapist/grief counselor on Monday and will see where that goes. I owe it to Aaron, Tom, and the rest of the world to do anything I can to live a productive life for whatever time I have left. Tom and I met with our wonderful accountant yesterday about setting up a charitable foundation in Jesse’s name and honor. That gives me a tiny glimmer of joy. I’ll have more information about that soon.

sunset-at-sleepy-hole-park-may-9-2014
Sunset at Sleepy Hole Park, Suffolk Virginia. By Aaron Apple.

A new life story: Under construction

I have been through the severest emotional wringer and I know I have not yet emerged from the other side; however something must have loosened up last night because this morning I feel something different from the usual leaden lump of sadness. It is like a wider more philosophical view of life has opened up, a sort of heightened awareness of being part of something more vast than the little life I lived before August 8th 2016, that life as the mother of two sons I expected would both live long happy lives in 21st century middle-class America.

I can see that life now from a bit of a distance and realize how much I identified with that narrative. I don’t say that was wrong. I think we are supposed to live the time and culture we live in. We are supposed to – some of us – get married and raise children and do all the things parents in our culture think we need to do for our children’s welfare.

This is all fine and good, but if God or circumstances happens to rip a jagged hole in that narrative, then we find ourselves forced into new insight – the insight that the life we knew was only a bubble in a universe of possibilities, a beautiful and blessed bubble, but a bubble all the same. God’s plan for each of us goes far beyond our life in a bubble. For those of us who have lost a child, the departure of that soul has seared a gaping hole in the sweet membrane and those of us who remain cannot just stitch up the hole and continue living inside as if nothing devastating had happened. Well maybe we could stitch it up and try to go on living just as before – but what a diminished life that would be, missing one of the stars of the story in a poorly patched bubble.

dew-drop-one
Dew Drop. Photo by Aaron Apple.

I need to tear that old bubble down. It is a totaled car, a condemned building. It has undergone a storm from which its flimsy walls cannot recover. I need to build a much bigger bubble that can encompass the massive size of our loss. The loss is so huge that it seems to take up more emotional space than the life of my son occupied in the old bubble. I know that sounds odd.  What I mean is that the life of that child has now extended into eternity and my mind must expand to reach him there. The new narrative has to be spacious enough to include a child in Heaven. It must have enough space to accommodate the oceans of love needed to heal the hurt, disappointment, and lost dreams that his loss has left in its vast wake.

My bubble metaphor is inadequate, but all metaphors are flawed. Metaphors are only tools to help us get some kind of a grasp on the eternal realities that buffet our hearts and lives. Bubbles. How else can I describe those little lives that we protect with the sheer energy of our minds and beliefs? How else do we gain any sense of safety and control? Anyone who reads history or watches the world news knows that, rationally speaking, this life is fragile. Yet we are able to create a sanguine reality for our families. And God protects our bubbles of safety, holding them gently in his hands, knowing they are precious and as real as He allows them to be. He loves our narratives and wants us to live happy life stories.

Yet He does not remove the possibility and eventuality of death. Sure, it does not seem natural when it is a child or young adult who dies. But it happens quite often. I know I will never again read or hear about the death of a young person without thinking of the parents with empathy and saying an earnest prayer for the future that awaits them.

Today I am grateful for the lovely story I got to live from the moment of Jesse’s birth to the day of his death when our story abruptly changed. I am still adjusting to this exquisitely painful change, but I am beginning to accept that it is what it is. I choose to trust that God is in control, that He has Jesse in his capable and loving hand, and also holds the rest of us. I am still here in this body but am more acutely aware of the temporary nature of this earth life. As for what exactly happens after death I trust the details to God. I know we have a glorious ultimate purpose and I’m pretty sure it has to do with learning the true nature of love, but I trust God to show me the way, moment by moment. He knows that’s all I can handle right now.

People ask how I’m doing

Kind people often ask me how I am doing. I have settled on a standard answer: “Okay.” It is almost true. I am not doing horribly. I am going about my life and can still find pleasure in a cup of coffee or a conversation with a friend. Though it surprises me to be able to say this, seven weeks after the death of my son, I am still a functioning human unit. But even say, though I will tell people I am “okay” I am forever changed and perhaps my outward life will soon reflect that.

One thing I keep reminding myself it that millions of people die every day, many of them with living parents. Death is a natural part of life, blah blah blah….I knew that before this happened. I try to understand why it is so different when the person who has passed on is my child. But the fact is it is different. Very different. It is like a stab to my own personal heart, worse than my own death, because it is a living death. When your body dies you live again in a new form. When someone who is a part of you dies, you have to keep living with death dragging you down inside. Maybe this is the hardest part of it.

How can you purge yourself of your child’s presence? Also how to incorporate the knowledge that your most sacred charge on earth –to keep him alive — has failed? Rationally I do not know what I could have done to prevent Jesse’s death, but there is that persistent instinct that I have failed in what I thought was my life’s highest purpose and all my sub-purposes are tainted and stripped of light and joy.

And yet I am doing sort of okay. On some level I know I did okay in my job as Jesse’s Mom. I might even get a B+ on my final report card in the subject of Parenthood. It’s just that the Jesse part of the job is over. Jesse finished his purpose in life earlier than I expected, and I have not yet finished mine. Therefore, my purpose or mission is not done. Obviously not, since I have another son who needs me. But I sense that parenthood is not my only reason for being here. I never really thought it was, except that when Jesse died, I realized the extent to which I had identified as his mother. I mean, it’s not that I didn’t realize it was important while he was alive. I poured everything I had into the job. It’s just that, I never realized the extent to which he had become intertwined with my identity.

So what am I to do now? I used to like doing things — like art and writing and had ideas about a direction to go with those things. But now somehow I have little enthusiasm about those ideas. I can barely remember what those ideas were. Sometimes I pray to the Lord to send me a scripture to give me a clue about what I ought to do. This morning Psalm 42 flashed in my head. It is the one that starts “As the deer pants for water brooks, so pants my soul for You, O God.” I did see two deer yesterday in a field near my house.

I read the psalm and it did speak to me. It is all about the psalmist’s spirit being cast down and needing to find comfort through hope in God. Well in this time of my life where else can I find hope or comfort? When your child has left the earth there is nowhere else to go except despair or amnesia, and neither of those options appeal to me. Because of that circle of hope shining through the dark shadow of death, I can still find mild pleasure in a cup of coffee or good music or conversation with a friend.

Psalm 42 (NKJV)
1 As the deer pants for the water brooks,
So pants my soul for You, O God.
2 My soul thirsts for God, for the living God.
When shall I come and appear before God?[b]
3 My tears have been my food day and night,
While they continually say to me,
“Where is your God?”
4 When I remember these things,
I pour out my soul within me.
For I used to go with the multitude;
I went with them to the house of God,
With the voice of joy and praise,
With a multitude that kept a pilgrim feast.
5 Why are you cast down, O my soul?
And why are you disquieted within me?
Hope in God, for I shall yet praise Him
For the help of His countenance.[c]
6 O my God,[d] my soul is cast down within me;
Therefore I will remember You from the land of the Jordan,
And from the heights of Hermon,
From the Hill Mizar.
7 Deep calls unto deep at the noise of Your waterfalls;
All Your waves and billows have gone over me.
8 The Lord will command His lovingkindness in the daytime,
And in the night His song shall be with me—
A prayer to the God of my life.
9 I will say to God my Rock,
“Why have You forgotten me?
Why do I go mourning because of the oppression of the enemy?”
10 As with a breaking of my bones,
My enemies reproach me,
While they say to me all day long,
“Where is your God?”
11 Why are you cast down, O my soul?
And why are you disquieted within me?
Hope in God;
For I shall yet praise Him,
The help of my countenance and my God.