Saturday, January 19, 2013

Coping with the death of a child and supporting their parents

What happens in the "My Child is Dead" club should be known by everyone in the Universe.  This is not fight club.  This is I can't believe I'm living this nightmare club.

The club shouldn't be a secret.  It shouldn't be hush-hush.  It should be talked about, shared, supported and know across the land. We are hurting.  We need love.  Understanding.  Non-judgmental and unconditional support.  We need to be listened to, not told what to do or how to feel.  We need time.  We need tissues.  We don't need to eat, sleep, 'get over it' or 'move on'.  We don't need to hear how much better off they are, how it was somehow for the best or at least they didn't suffer or are no longer suffering.  WE are suffering.  WE are hurt.  WE need to walk our own road, at our own pace, in our own way. WE will never, ever be the same.  We are not bad, stupid or neglectful parents (though depending on the circumstances of our child's death, some say we are.  I don't have to tell you how painful THAT is).  We are parents who loved our children and now they are gone.  Time may heal, but it doesn't cure.

Joining a club is typically a positive experience, one made voluntarily and with great enthusiasm for the subject. Not so with our club. We are a unique group.  We are the club no one ever wants to belong to.  We are the person you never want to be.  We are the person some of you can't handle being around, because we 'bring you down'.  Because YOU can't deal with our pain.  We have no choice. We are parents who've had to bury our own children.  We didn't expect to join this club and we are beyond pissed that we had no choice but to become a part of it.

To the members of the club who have reached out to me in comments on my blog post about Meghan's Angel day, on her Facebook page and through her Web site, I most sincerely, lovingly and with an open but heavy heart welcome you to the club.  I've heard from so many of you who are also members.  Far more than I ever expected.  Some, very recently have lost your children.  You've lost your unborn babies, infants, toddlers, teenagers or adult children.  They've been lost to cancer, accidents, suicide and medical illness.  None of us ever expected it would happen to us.  Yet here we are.

All of you have commented that in reading my words, you realized you were not alone.  You realized you had similar feelings and experiences  you felt the pain, the guilt and the anger.  Some of you have never shared with anyone how you felt or feel, especially beyond your spouse.  It helped to validate how you felt and that you were not alone. That you were not 'broken'.  You've all done the same for me.  We are bonded in our grief and our love of our children.  Our experiences are different, yet similar.  We walk this road together in spirit.  I've tried to answer you all individually, I'm so sorry if I haven't.  I've read all of your words and said prayers for your children and your families.

This post is for both those who have lost children and those who support them in their loss.  We cannot bring our children back to us in body.  What we can do is honor our feelings, remember them and the joy they brought to our lives, preserve their memory and love them always.  Many of those who lost children or grandchildren, especially recently, have asked how I coped.  Does it ever get better or easier?  Is it a life sentence of guilt, pain and depression?  Will my marriage survive? How am I going to do this?  I hope to help answer some of those questions for you here.

Disclaimer:  This is going to be a long post. Very long.  Although about the loss of a child, much of what I say here is appropriate for any loss of a loved one.

Of course, I can only speak for what I found helpful and that which worked for me.  Know you will find your own ways of coping, processing and integrating your child's death into the rest of your life.  It is my distinct hope that in sharing what I've done the past 8 years to keep Meg's spirit alive in our family, the growth and change her death catalyzed in me and how I've gone through the stages of grief it will help you who is reading this.  Either in your own journey in living your life with a spirit child or in your role supporting a loved one who is.  Please take from this only that which resonates with you and leave the rest.

You already know about my experience of Meghan's Angel Day and how I honor her memory and remember her death ever year.  If you are new here, read my post from December 18th.  You already know about how Meghan's Hope began, what it is and why I devote so much time and energy to educating others about the dangers of furniture tip-over and child safety.  It is how I continue to mother her.  It is how I honor her life and her death.  It is perhaps, her purpose in my life and yours.  In her death, in sharing her story, she has saved thousands of  lives, at least I hope so.  That brings me some peace.  It doesn't lessen the pain of her loss any.

So, what is the experience of losing a child like?  It's a living hell.  You've not known pain until you've held your dead child.  Until you've seen their tiny lifeless body in a casket.  Until you've attended their funeral, buried them and came home without them.  You can never, ever know what it's like unless you've experienced it.  Don't ever pretend to *know* what it's like.  Don't ever say you understand how that person feels unless you've lost a child yourself.  Even then, your experiences and feelings could be very different.  That which comforted you may not provide any comfort and in fact may anger another person.  Please think before you speak.  That is my first piece of advice.

Don't touch their stuff without asking first:  

The day she died, neighbors held vigil at our house.  One of them was a police officer.  He wisely told the women who, in wanting to do something to help, wanted to clean for us.  He told them not to touch anything, the house needed to be exactly as I left it.  They had no idea what or where Meghan's memory would be for me and I needed to have that part of normalcy untouched.  I am so grateful for his words.  I went to that last cup Meghan drank out of in the sink and held it, smelled it, put my lips where hers had been.  If they had washed it, that opportunity to reconnect with one of the last things she touched would have been forever lost.   In a similar story, my mom, in trying to be helpful, vacuumed Meghan's room a few days after she died.  I was pissed.  I never told her.  Sorry, mom.  She vacuumed up bits of Meghan that day.  Her hair, her skin, her smell.  The energy of where she last lay, played, died was disturbed by the vacuum.  I couldn't have known I'd feel that way.  Neither could my mother.  Let it be a lesson, parents, especially mothers need to touch, feel, smell their children.  I sniffed her shoes, her clothes, the floor.  Anyway I could connect with her, I tried.  I still do.

Many people are unsure what to do with their child's room and 'stuff'.  Nothing, until you are ready.  Some people have kept their child's room exactly the way it was left the day they died for decades.  Others tweak it over time.  After about a year, we took Meg's day bed down.  We moved her dresser and I moved my scrapbook and beading supplies into her room.  It's now 'our' space.  Some of her toys are still there and other little bits of her.  Pictures she drew, a box she painted, her hair pretties.  Other things I've packed away and ritualistically go through periodically.  That was what resonated with me.  The windows still bear her finger prints.  The lamp that was on her dresser still has the creased lampshade from when it fell the day she died.  It's a blend of her life, her death and my love for her.  A place for me to be with her, to channel creativity, to meditate to just *be* with her, for it was the last place she was alive in our home and for me, it's sacred.

Don't hound them about eating:

I lost 20 pounds in the two weeks after Meghan died.  I had no appetite.  Everyone told me I *had* to eat.  Fuck that I told them.  I ate enough to survive.  Every person who told me to eat only pissed me off more.  I picked at egg nog, sweets, and pasta.  My go to comfort foods.  I did greatly appreciate the non-stop food train that came to our house for weeks after she died.  That is so helpful. I, nor anyone else in my family, had to worry about cooking or cleaning for weeks.  I'd eat a small bit.  Food arrived, fully prepared, often hot, the containers it arrived in were either disposable or left on the porch the next day to be quietly picked up.  What a Godsend.  Do that.  For weeks, if not months.  There are great services out there like Lostsa Helping Hands and Meal Train to help organize it.  Eventually, I began to eat more.  I slowly regained the weight, but it took years.  I was not overweight to begin with but I was not anorexic.  I just ate a lot less.  I had no appetite.  Depression will do that to you.

Some people will have the opposite reaction.  They'll eat non stop and gain weight.  We all cope differently.  For a time, it's to be expected.  Be sure you get regular health care check ups in that first year.

Sleep may be elusive or all you want to do:

I couldn't sleep.  I later learned I had PTSD.  Every little noise I had to investigate, because I never heard the dresser fall.  I checked on my kids every half hour to be sure they were still breathing.  I'd lie in bed at night, desperate for sleep but unable to.  I closed my eyes and relived everything about her death.  I'd pull the car over frequently to be sure the kids were breathing when driving.  I was afraid to cross railroad tracks. I lived in constant fear of something happening to one of my other kids.  Several people suggested sleeping pills.  I was petrified to do that.  I already had tremendous guilt about not waking up and saving Meghan, the thought of chemically knocking myself out and potentially not hearing something that could save one of my other children was unbearable.  Besides, I don't tolerate medicine in general and I avoid it unless necessary.  It may be very helpful and appropriate for others, it just didn't resonate with me.

How do you prepare for their wake, funeral and burial?

This is really a matter of personal and religious preference.  Some people will choose cremation and a memorial.  Meghan was baptized Catholic.  We chose a one session wake, funeral mass and public commitment ceremony/burial at the cemetery in our town.

We were told to call the local funeral home in town to make arrangements. I called the afternoon she died.  They already knew about her death and were expecting my call. I swear the woman I spoke to was crying as I spoke with her.  We met the next day.  They asked that I bring clothes for Meghan and a blanket of hers.  I chose her favorite outfit.  Pink, sparkly pants with big flowers on them, a pink shirt and her white fleece hoodie with a kitty on it.  Pretties for her hair and pink slippers I had gotten her for Christmas for her feet and of course, pink socks.  I brought the blanket she slept with every night, a pink, flowered fleece blanket.  See a theme here?  :-)   The director explained to us what to expect.  We decided upon calling hours and a time for her funeral.  He helped us to write her obituary.  He called the florist to meet with us that day (it was Sunday) and we arranged a time to pick out a place for her at the cemetery.  We chose a prayer card for the guests of her calling hours.  The entire experience was surreal.  He chose a casket for her.  He simply asked if it was OK if he chose, since there were not many options and he knew how difficult it would be for us to go into *that* room 24 hours after our daughter had died. The one he chose was perfect and beautiful and fit for a little blonde angel.

He called us the next day to let us know she was at the funeral home. Because her death was accidental, an autopsy was required.  So she went from the hospital to the medical examiner and back to the funeral home. He told us we could come see her whenever we wanted to.  We went early the morning of her calling hours with immediate family to see her.  This was so important.  We opted to do it in stages.  Her dad and I saw her first, laid out in the casket.  Then we invited the boys in with us.  Then our parents, siblings and friends in that order.  We took pictures of her that I later scrapbooked.  We had hours to be with her, cry, talk amongst our selves and prepare for the public viewing later that day.   We brought some of her things and pictures to display, my husband made a slide show of pictures of her and our family to be looped, we made a CD of her favorite music to be played in the sound system.  Those who came to pay their respects were probably a bit surprised to hear an array of Disney tunes and Mambo No. 5!  :-)

The calling hours were for 3 hours.  It was non-stop.  We were blown away by those who came.  We stared at her, cried, laughed a bit and comforted our friends and family more than they did us at that point I think.

Her funeral mass was as beautiful as it could be.  I've written about it before, so I won't elaborate here.  We also had it photographed.  You can see it in pictures here with a gorgeous song called 'Visitor From Heaven' Please take a few minutes to watch it, even if you are afraid it will make you cry.  It speaks volumes more than I could ever write.

Innate and mundane stuff will piss you off

You feel as if you are operating in slow motion, everything is foggy.  It's hard to feel anything other than sadness.  If you smile or laugh, you almost feel guilty.  If someone else is smiling or laughing you hate them.  How dare they be happy when you are in so much pain?

You find the mundane things you used to enjoy either don't hold the same appeal or are downright annoying now.  Seeing other children who look similar, act similar or seeing children's things your child would have liked can rip your heart right open.  I can't tell you how many times I'd have something in my hand to buy for Meghan before I realized she was dead, weeks and months after she died.  I couldn't even walk past the little girls clothing section of stores for a year without dissolving into tears and feeling like I got kicked in the gut.

I partially cope with this by purchasing trinkets for Meg's special place at the cemetery, her memorial garden at our home or buying something she'd have loved and donating it to a charity.

Trigger Days and Being Blindsided

There are certain 'trigger days' when you can expect a resurgence of emotion.  They are the difficult days.  The firsts of the first year are usually the most difficult and expected. For a while, for me, it was every Saturday.  Meghan died on a Saturday.  I was hyper-aware of days, times and how it correlated to the day and time of her death and my experiences that day.  Much like a mother remembers her birth story and the birth day of her children, she remembers their death day.  At least I did.

Then it was the 18th of every month.  She died on the 18th.  Even now.  Every 18th day of the month, I think of her angel day.  Now it's nothing more than 'another 18th' without her.  But at first, it was a marker of some kind emotionally and I was more aware and it hurt more on the 18th's.

The big ones of course are holidays, Mother and Father's day, the child's birthday and their death day.  I was surprised how much my own birthday was a trigger for me.  Then there are things like the first day of school or what *should* have been their first day of school.  Going through the milestones of your other children, without the one you lost, wondering what it would be like if they were there for this event, or their own graduations, proms and other rites of passage.  You can prepare for them in some ways, but in others you can't.  I found I dreaded them.  The anticipatory grief was almost worst than the actual grief and pain of the day.

You will be blindsided at times.  You'll think you're fine, having a good day, going about your business, even years later, and then, out of the blue, something will pull at your heartstrings.  A song, a person, something you heard, a child that looks like yours did, it could be anything, anytime and anywhere.  It's to be expected, and even now, 8 years later, it still happens once in a while.  Not nearly as much as it used to, but I expect it will happen forever. For me, a year or so ago, it was a Seventh Generation ad.  There was a little blonde girl wearing a pink shirt looking through a washing machine door.  My heart nearly stopped.  She was a ringer for Meghan! Blew my mind.  Her brother asked how it was possible she was living somewhere else doing magazine ads!

Counseling is helpful, Depression is normal for a time - Please LISTEN 

The loss of a child is up there on the life stress scale.  You have every right to be depressed and for the better part of the first year.  It's an expected grief reaction.  It's not something you get over.  There is help out there.  The Compassionate Friends is a bereavement support group especially for parents who have lost a child of any age.  They have a wonderful Web site and local chapters that offer support meetings. There is a national conference every year and a walk to remember, where walkers carry the name of your child.  This year it is in Boston.  They sponsor a candle lighting memorial around the world in memory of the children gone too soon so that 'their light will always shine' on the second Sunday of December.  I can't recommend them enough.  For parents, siblings, grandparents and friends.

Grief counseling is tremendously beneficial.  It can help you express and validate your feelings.  Help you navigate and process grief.  It's a process.  Many people find it helpful.  I did.  Sometimes, anti-depressant medication is helpful, too.  I strongly recommend it be used together with talk therapy.  Far too many primary care physicians are willing to write prescriptions without understanding why that person is requesting or needing them and without appropriate follow up.

As a friend, offer to listen.  Give them permission to call you anytime, anywhere, for any reason.  You may hear the same thing over and over.  Listen.  Only offer your opinion or advice if they ask for it, especially initially.  Hug.  Say I'm sorry.  Be there.  Offer to help by doing housework, shopping, cooking, errands.  Don't be afraid to say their child's name, ask what they are thinking or how they are feeling.  It's ok to cry, yourself.

How do you answer the question, "How many children do you have"?

It may well depend on the day, how you are feeling and who is asking.  In the first few weeks after she died, I'd just cry if anyone asked.  Avoiding human interaction was my chosen coping strategy at the time with anyone who didn't already know.  Thankfully, I'm pretty well connected with some pretty amazing people, so I had a lot of support and understanding around me.

Many people don't acknowledge to strangers that they've lost a child.  It may be too painful to say out loud or, many of us simply don't want to have to deal with the person who is asking's discomfort at our answer.  It can be emotionally exhausting to deal with the fallout of such an unexpectedly loaded question for both parties.  I think that's unfortunate.  Our children's life and death both deserve to be acknowledged.

In my professional bio, I say that I am the mother of 3.  Two boys who walk this earth with me, and a daughter who flies with the angels.  Most of the time, when asked, I say I have 3 children and leave it at that.  What if they ask a more specific question, like how old are they or are they boys or girls?  Then, I typically say I have 2 sons and a daughter.  I often elaborate on my own and say my youngest son and my daughter are twins, but she died when she was 3 and give the current ages of the boys, because, well, at that point, full disclosure is easier.  You'd be surprised how expressions change and that abruptly ends the discussion.  Some say nothing.  That hurts the most.  Some say they are sorry.  I appreciate that.  Some ask how she died.  I tell them.  They are often moved to tears.  Sometimes, it provides an opportunity for discussion about safety. Sometimes, I end up comforting them.

Some relationships will change

Death has a way of showing you who your true friends are in life.  There are those that are there for you when it's sunny, but it's those who can sit with you through the storms, through the flood of tears, the violent tornadic winds of emotion and offer you a life preserver of unconditional and non-judgmental support that are your true friends.

Family and friends will all cope differently.  Some cope by not coping at all.  They avoid contact with you.  They don't want to talk about your dead child.  They dive into their work or hobbies.  They become 'busy' and unavailable.  You may find that fundamental differences can no longer be dealt with.  Some people you were once close to may drift away and those relationships may end.  Others may become closer and stronger.  New relationships will blossom, perhaps with those who've had a similar loss or experience.

I lost some really good friends after Meghan died.  Some family members became closer, others more distant. I found some new, really amazing friends.  I am grateful for all of them and what they brought to my life in the time they were an active part of it.

People often ask me about their marriage.  Will our marriage survive?  I don't know the statistics.  I do know nationally, the divorce rate is over 50%.  Whether or not your marriage may survive may well depend on how that child died, if blame is placed on the other parent or if  there was already animosity in your relationship.  If your marriage was anything but perfect before your child died, it's going to take a lot of work and understanding to weather the storm of losing a child.  It will take open and honest communication, understanding, perhaps some individual and couples counseling and tincture of time.  Be gentle with each other.  Be honest with each other.  Talk.  It may actually make your marriage stronger.  It may not.  The general advice is not to make any drastic changes for at least a year after the loss of a child because it takes time to process the grief.

My marriage did not survive.  It's a long and personal story and not one I have the intent of ever sharing in a public forum.  Suffice it to say that our marriage was in trouble before Meghan died.  Her death certainly did not help that at all.  There were fundamental reasons why our marriage failed.  It was NOT because Meghan died.  Her death did catalyze a tremendous change in me, my beliefs and my view on life.  The decision to end my marriage was not made lightly, but it was, in the end, the best thing for all of us.

And for those who asked, I recently re-married.  I, of course, never expected to marry again.  In a twist of fate and the way the Universe works is amazing way, he was actually at Meghan's wake.  He was a friend of my sister's, although I did not know him until years later.  He had also seen her alive, a year before, at my sister's wedding.  He is now the proud step-dad of an angel.  He spoke of her in his wedding vows to me.  Not a dry eye in the house...

What about 'signs'

Yes.  I absolutely believe in signs.  This could be, and probably will be at some point, a post in and of itself.  I am highly intuitive and clairsentient and somewhat clairvoyant.  I always have been and sometimes it scares the hell out of me.  I have felt Meghan's presence, that of other deceased loved ones, and in my work the presence of the deceased loved ones of my patients when they are near death themselves.  I've been introduced to many who have crossed over by their still living loved ones in the hours and days before they themselves died.

I have only 'seen' Meghan in spirit once.  The night she died, in my grandmother's arms.  Truth be told, part of me really wants to see her in spirit and part of me is afraid.  Probably why I haven't seen her since.  Her twin used to see her all the time.  He talked to her and played with her.  He still gives me messages from her.

I've had many experiences of signs from Meghan. Details of which I'll save for another time and place, but the thing I see the most are heart clouds in the sky.  There is an album of some of my favorites on her Facebook page.  This one was at her brother's soccer game, near their birthday.


Ways to preserve the memory and creating new traditions

This is a very personal thing.  Here is a list of some of the things I have done or that people have done for me that I loved.

  • A gift made of hand or foot prints.  We have the ones given to us by the ER nurses, I made reverse molds of the plaster heart hand and foot prints and gave them to family as ornaments.  Another person made a stained glass plate of her hand/foot prints for us
  • Jewelry for mom:  I was given a mother and child necklace, several bracelets with Meghan's name,  a tiny tag necklace with the names of ALL my children, and lots of angel pins. My all time favorite piece is a pin made from one of her last drawings, given to me by a good friend.  We refer to it as 'potato Duncan'.   Another one of my favorite pieces is an angel wing necklace.  They are called Brooke's angel wings and Brooke is the survivor of a head injury from a furniture tip-over.  Her and her mom now make these necklaces to raise awareness and funds to pay for her medical bills.  http://www.brookesangelwings.com/
  • House decor - we received lots of angels.  They are all over the house.
  • Keepsake gifts. I scrapbook.  My scrapbook friends made a Tinkerbell pink picture frame of Meghan and wrote a poem inspired by a finger painting her brother had done after she died.  I'm looking at it right now.  Another friend made me a scrapbook page about Meghan and another an entire scrapbook about her. 
  • Pictures - there are pictures of Meghan all over the house.  In her room.  Pictures of her with her brothers in their rooms.  I made both of her brothers a small scrapbook album of just pictures of them with their sister.
  • Ornaments - every year, Santa leaves a Tinkerbell ornament in her stocking.  Her twin usually hangs it on the tree.  This year, it jumped off the tree and shattered.  Instead of getting upset, we laughed and said, "Oh, hi Meggie!  Guess you didn't like that one." 
  • A memorial garden - I have one area that is a Meggie garden.  Pink roses, a butterfly bush, kitty garden statues and Tinkerbell decor abound.  
  • Personalize their cemetery plot:  if your cemetery allows, make it about the child.  We chose her stone carefully.  We choose flowers in colors she'd like.  There are always kitty and Tinkerbell trinkets.  We bring new decor now and then.  Bird feeders and colorful twirly things in the summer time.  A pink tree at Christmas.  A bunny and a basket of eggs at Easter.  A kitty pumpkin at Halloween.  You get the idea.  
  • Celebrate their birth day:  Meg was a twin, so we still celebrate her brother's birthday every year.  It is exquisitely painful to me on this day, probably the second hardest day of the year for me, because I see one where two should always have been. I bring her flowers and a balloon.  Every year since Meg died, we have a family cupcake picnic at the cemetery on their birthday.  We sing happy "bird" day with a suet cake.  We eat our cupcakes. We blow some pixie dust to the heavens and then we run around sill,y just like she used to, and sing "Tinkerbell all the way".  Anyone else at the cemetery that day thinks we're nuts.  We don't care.  It's about Meg, remembering and celebrating HER essence, her joy, her spunky-ness.  What better way than to emulate her?
  • Gifts of honor - I received many notices of masses in Meg's honor, memorial candles with her prayer card on them, a tree planted in the Children's Forest in Israel, donations made in her memory to charitable organizations and especially to the Sterling Animal Shelter, where they received so many donations, they renovated their kitty adoption area and named it after Meghan.  
  • Quilt:  I wanted to have a quilt made of some of Meghan's clothes.  Someone quickly volunteered.  Although I hated to part with that box of clothes, the gift I received in return is beautiful and now I can wrap myself in her in a way.  I can tell you what every scrap was from and what I or she loved about each item.  





  •  Incorporate their life into yours:  Perhaps this is best noted as how I involved Meghan in my wedding day.  We had a chair for her.  I had a tiny picture of her on my bouquet.  We had her special candle centerpiece that we lit as we said the '5 candles' poem.  We had a memorial slide show. 

Perhaps the greatest gift you can give someone who has lost their child is remembering them out loud.  Say their name.  Talk about what you loved about them.  What you remember about them.  Send a card every year on their birthday, their angel day, Mother and Father's day.  Let them know you are thinking of them. That you know it's a difficult day for you, even if it's years and years later.  I promise you, their parents are already thinking of them.  To know their child was not forgotten is the best gift.

Specific to Meghan, the greatest gift I can receive now is the sharing of her story.

If you are a parent who has lost a child, the greatest gift you can give yourself is patience.  Allow yourself to feel what you feel.  Know it's a process.  Connect with those who you feel called to.  Be gentle with yourself.  Know your child's spirit and light will always live in your heart.  Let it shine!

I could write so much more, and will someday.  Hopefully this has been helpful on some level.

Wishing love, light and peace to all of those who have lost a child, a loved one or are supporting someone who has.










6 comments:

  1. This was insightful, thank you for sharing

    ReplyDelete
  2. Thank you for this...it is helpful to me. As I told you my sister lost her 14 year old son November 23. This has been painful for all of us but I just don't know what to do? :( Life will never be the same. And it's not something that is going to be better one year from now....I think those who haven't been there have no clue what the family goes through. Losing a child is the unspoken nightmare that none of us dare talk about. And those that go through it feel so alone. It does help talking to others who are living through it. Meghan was a true beauty.

    ReplyDelete
  3. Thanks for sharing and I am so sorry for your loss. I lost my daughter, July 16, 2012 on her 30th birthday (and our wedding anniversary), in a pedestrian hit and run vehicle accident. She was walking across a crosswalk and was struck and thrown 50 feet. The driver of the vehicle has not been found. Your writings are so familiar to me even though my daughter was so much older. It is a terrible journey with no end in sight as life goes on. God bless you and keep you and keep up the good work.

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