It's Not Contagious

Whether we consciously know it or not, fear permeates much of our existence.  As children, we fear clowns, or bogeymen, or monsters under the bed, or even our parents' punishments.  When we are older, we fear rejection, fear looking stupid, fear trying something new.  We fear being infected by someone with a contagious disease.  We fear losing our job, or being homeless, or outliving our money.

Parents, though, have a much deeper and more visceral fear.  We fear for our children's safety.  If they are ill, or in danger (such as in a war zone, or a public safety officer), we might actually articulate that we fear they will die.  Fear grips us.  It is powerful and palpable.

So, it was natural, I suppose, for most people to stay at arm's length, and in some cases actually avoid me, after my son died.  I finally figured it out.  They were afraid.  Afraid it would happen to them.

Afraid that if they got too close, the awful, worst nightmare might become theirs as well.  As though a child dying is contagious, which it is not.

They kept their distance because they were also afraid of saying or doing something wrong.  

Society gives us options and guidance when a parent or spouse dies.  Many sympathy cards fill the card racks, or pop up on the greeting card websites.  But the loss of a child or sibling is so out of the ordinary grief experience that suddenly none of the cards seems appropriate.

There is little in our society that gives people any clue about what to do when someone's child or sibling dies.  It's just too awful to comprehend.

I was a solo mother when my son passed away.  His dad, my husband, had died only 11 months earlier.  (Clearly, that was not the best year of my life.)  So I had no obvious person (i.e., the other parent) to turn to that terrible day when I found out that my son had died.

Although I was initially in the presence of others, I actually was very much alone.  It was like a bubble of opaque fog had surrounded me.  I was there, but not quite connected.  The worst part was finally going home.  You would think that family and friends would jump in to make sure I didn't spend those first few horrible nights by myself but no.........they didn't.  Amazing.

People did step up and do wonderful things for me.  It was just those first days (and especially nights) that were the worst of my life.  I ultimately felt very blessed by those who stepped in and kept me from facing those early nights alone.

My long time friend (truly my BFF) who lives in another state dropped what she was doing and made her way to me.  She stayed with me for a while (I was still in a daze of grief when she arrived and to this day cannot remember how long she stayed.)   She helped me through the really ugly parts:  making funeral arrangements, going to the funeral home to see my beautiful boy one last time, getting through the service, writing the obituary.  She also made it possible for me to keep going, making sure I ate, talked, stayed in the moment, just being with me so I was able to go on minute by minute.  She took me out of town and away from the house, which was exactly what I needed, even though I didn't know it.

My sister-in-law, who was very close to my son, also flew out from another state on short notice to be with me and help me handle all that needed to be done.  She is a "woman of the cloth" and so she did the memorial service.  She knew him so well, and had been a source of support for him, and she was able to put together a perfect service that fitted who he was and truly was a celebration of his life.

My sister and her family contributed so much.  They did so many things for me, from arranging the place for the service, printing up materials, reading at the service, and sending a big basket of goodies to the hotel where my BFF and I went. I'm sure they did more, but my grief blotted out reality on many levels.

My niece was very close to my son and even though she was a new mother to her own son stepped in and organized a session where she, my daughter, my sister in law and BFF sifted through boxes and DVDs of photos of my son.  Then my niece -- always so artistic and talented -- prepared a beautiful triptych of storyboards that showed my son in the various stages of his life that she put on display at the memorial service.  I still have them and they are a wonderful gift from her.  

Yet the truth is, at the (literal) end of the day, what I needed was companionship, another person with me to help keep the spreading and formidable and all encompassing darkness at bay.  Ultimately I realized that family may not always be able to provide that.  Mine did their best, but at night I was still alone.  Thankfully my BFF was there for me as soon as she could be.

My BFF is an amazing person, strong and resilient and "can do."  Her arrival and taking charge is proof that action can dispel fear or at least keep it at bay. She was like a godmother to my son...made him a dinosaur baby blanket when he was born, and that blanket was still in his room when he passed.  He loved it, although like any self respecting young man, would not admit it.  But he wouldn't let me put it away, either.  He had also traveled to see her (on his own) in the six months before he passed.  He enjoyed staying with her and her husband, talking politics, religion, spirituality, and life. They made sure he got to the airport to get safely back home to me.

Ditto with my sister in law.  She is a "can do" person and prefers action.  She too was very connected to her nephew and helped him through some tough times.  She was a great inspiration to, and motivator for him.

And what about my niece, who has her own son?  How did the fear not prevent her from doing all that she did?   All I can say is that she is an extraordinary, wonderful human being and was close to and loved my son, her cousin, very much.  Love can indeed conquer fear.

I also received cards in the mail, or at the service, and flowers and plants and edibles were left for me at home.  There were many expressions of sorrow and support.  A few people came by and spent a few minutes with me. Many, many people came to the service.  I was so awash in grief that I am sure I don't remember everything.

But paradoxically, what I remember is the overwhelming sense of ultimately being alone. Strange, is it not, that I would conclude that, after just listing all the outward expressions of support?  Grief that is the kick-in-the-gut, crush-your-chest-so-you-can't-breathe grief leaves you with impressions....and that's the impression.   Maybe it is rooted in the reality that I was alone for the first few days. And especially that first night. Alone.  I still can't believe I got through it.  The God awful nights.  I had to walk by his room to get anywhere in the house, and ended up shutting the door so I had the fantasy that he was just out for the night.  Trying hard not to listen for his car driving up, or him opening the door (to the house or the fridge or the microwave).  Trying to sleep knowing he was never coming home.

Yes, I was alone those first few days, but ultimately got through it and survived because so many showed their love and support, each in the way that they were best able to do.

There were those who couldn't call me, or write me, or come see me.  Most of them later said they just didn't know what to say, or do, or that it was so awful that they were afraid of making it worse.  I do not think the lesser of any of them.  We can only do what we can do.  Most unhappiness comes from unrealistic expectations.  When a  child dies, there should be no expectations either from the bereaved or from those around him or her, because everyone goes through the fear and anguish in his or her own way.  I have much gratitude for any contact, any expression, any effort to reach out, no matter how long it may have taken the person to reach out to me or in what form it took.

As weeks went by after his death, I resumed what seemed to be my life.  What I realized, though, is when people asked me, "how are you doing?" they didn't really want to know.  The first few times I said how I was doing (saying basically, not well) I quickly figured out that no one knew what to say in response.  So I just ended up saying that I was doing OK.  That was acceptable and avoided awkward pauses.

As more time went by, another horrible reality set in.  I was not "supposed" to talk about my son.  No one talked about him.  No memories, good or bad, no mention of his name.   It made everyone way too uncomfortable.   I have since learned that this is a very common experience for all of us who are members of this club of woe.

That absence of his name has tempered  somewhat, because I finally came to a place that allowed me to say his name, first in family gatherings, later in general conversation.  If someone else felt uncomfortable, so be it.  He was part of my life, and he remains a part of me.  People share memories of spouses and parents, and by Jove, I was going to keep my son's memory alive by sharing memories of him too.  I have found that the more at ease I am with mentioning him at appropriate times (talking about a particular Thanksgiving dinner, for example, or about an assignment for one of his classes, or when he worked in retail) the more comfortable others are in talking about him.

I really like it when people remember his birthday.  I even like it when they remember his memorial day.  It means he mattered.  He still exists on some level because he is remembered.

Now that I am at a place in my grief journey where I can talk and write about this without shedding prodigious quantities of tears (well, most of the time, that is) I want to share some thoughts on what to do when a friend, family member, co worker or neighbor loses a child.   To overcome your own fear, it's important to have a little guidance on what to do to help, or at least to not make things worse.  Action puts fear at bay. It's important to do something.

Just recently, the owner of a neighborhood shop that I have patronized for years gingerly approached me on this subject, saying that someone he knew just lost his son.  He had no idea what to say or do, and wondered if I had any suggestions.  I spoke freely, without tears or sorrow, because his question transported me back to those awful few days and weeks after I lost my son. I wanted to help that bereaved parent, and I also wanted to help the shop owner who felt adrift not knowing how to help.

I want to share the list of what, in my experience, is how to help.

First, if at all possible, BE THERE IN PERSON.  Go see them.   Sit down and LET THEM TALK (or not, as they are able) and especially LET THEM CRY.   That's important.  Sometimes after losing your child you just can't talk.  All you can do is gulp for air and cry.  Just let them. Tell them it's OK to cry.

Second, don't try to "find the right thing to say."    There really isn't anything "right" to say when the grief is so fresh and so venomous.  It's more important to just be there, but it's OK to say how sorry you are, what a terrible loss, and especially, what a great/wonderful/special/funny/talented/any adjective person he/she was.  And most important, don't be afraid to share a memory you have of the departed.  SAY THEIR CHILD'S NAME.   "I always laughed or enjoyed it when [name] did such and such."  Your talking about and saying the NAME of the child is a drink of cool water in their desert of grief.

Third, please do not say "I know how you feel -- when I lost my mother/father/husband/wife...."   The grief of losing a child is totally different (I have lost my mother, father and husband, so I am pretty confident when I say this).  Repeat:  losing a child is totally different.

Fourth, if you want to do something to help, understand that the bereaved parent will not know what it is they need.  Try to be specific:  Can I help you plan the service?  Can I bring food?  Can I video the service?  Can I help with preparing a photo collage?  Or better yet, just say "I am going to do x, y or z."  Also helpful is to show up with food and a pledge to come back at a certain time the next day to share a meal.  Or to take the parent out for coffee or tea or something to eat. Answer the door or the phone and run interference for visitors, deliveries, etc.  If nothing else, leave something with them (a simple vase with a couple of flowers, or a small live plant or --- gold stars for this one --- a photo you have of the child that they don't have). Physical reminders of someone's love and concern and support are wonderful lifelines when the grief becomes overwhelming, which it does, frequently.

I get it that others' fear of contagion remains, no matter how many years pass since losing my son.  I no longer take the fear, or the avoidance, personally.  But, I am careful in how (or if) I divulge my loss, and with whom I share it.  I try to be discreet.  I am not ashamed of being a bereaved parent, but I want no pity, and I want no fear.  I am not solely defined as a mother who lost her son.  It of course is a part of me, but it is not all of me.

Yet I also want people to know that the loss of my son informs so much of my outlook on life, and that my son will never stop being part of my daily life.  It's true. Every day there are thoughts of him.  Looking at the garden he loved.  Taking care of his beloved cat and dog.  (His cat passed away a couple of months ago, which rekindled the grief as it was another part of life with my son that's now gone.)   I still drive his car.  His sister and I laugh at things he used to do, or smile when one of his favorite songs is played, or we talk about his favorite movies or video games or TV shows.  Whether or not you believe in angels or the afterlife, the fact is my son is still with me and will be with me for the rest of my life.

The death of a child is not contagious.  But it changes everything.  When someone you know has been initiated into this club of woe, know that it is a time of transition for them -- painful, awful, gut wrenching transition.  Being there with them, especially when the tears fall and nothing can be said, is the greatest gift you can give them.

Doing something -- anything - for them and with them is also the best antidote for fear ....yours, and theirs.  

"It is better to light just one little candle than to stumble in the dark."  

Whatever you can do to conquer the fear, and to reach out to the grieving parent in whatever way you can, will be like lighting a candle in their otherwise impenetrable darkness.