No excuses: Imagine it

“I can’t imagine what you are going through…”

It’s a phrase that every parent who has lost a child has heard multiple times. It’s meant well. The speaker wants to let the griever know that they recognise the magnitude of this loss. They’re trying to validate the griever’s feelings by showing how significant their feelings are. They are beyond the pale.

But for some, myself included, it does the opposite. It puts up a wall between the griever and the rest of the world. A wall which says what you are going through is so far beyond my reality that I cannot even imagine it. I cannot, and I will not. You are in a world by yourself. A world you will live in forever, because the truth that your child has died will never not be true.

There’s a strong element of self preservation in that statement as well. Losing a child is seen today as one of the most traumatic events that can occur to a person, in the Western world at least. It defies the natural order of things and goes against what we perceive to be a normal life. We bury our parents and grandparents, not our children.

When someone says, “I cannot imagine” they are protecting themselves and putting distance between your reality and theirs. They are saying that you life, and your loss, is so beyond them because that makes them feel safe. They cannot imagine, because they do not want to imagine themselves in your shoes. That would be too real. Too raw. Too terrifying.

If they cannot imagine it, it cannot come true.

Other kindly meant words can have a similar effect. When Eva was born with all her difficulties I heard a lot of people say things like, “you’re so strong”, and “you’re the perfect person to do this”. They were trying to buoy me up, to give me confidence, but what I heard was a slow dehumanisation that turned me into someone bigger than myself, stronger than myself, super human. Because if I am super human, than the person saying it can feel better about the fact that I am living with these struggles, but also confident that they themselves will never have to. If I am strong and chosen by God to have a child with so many extra needs and then lose that child too, it will be hard, sure, but it will be ok, because my strength will get me through. I will cope. Eva was given to me because I would cope.

These statements are meant to reassure, but like the “I can’t imagine” they leave the person feeling separate and isolated. We feel as if our experience is so foreign and alien that not only can you not imagine it, but in order to accept that it is happening and ok you need to turn me into someone with super human resilience and fortitude who can weather this storm.

The reality is losing a child already isolates you. You feel like you have some piece of knowledge inside you that most people don’t. But it’s not the knowledge you want, it sets you apart in the worst ways. It hums all day, a tinnitus of the soul, distracting you from everything else. And while it distracts and hurts and shrieks painfully at you, you also don’t want that buzzing noise to go away, because while you can hear that whining frequency, you are closer to your child.

It is some comfort to know that while you are out there on that rocky outcrop, feeling like the rest of civilisation is tucked up at home, there are other parents waving to you from their own cliff face. While it’s easy to feel alone and as if no one else gets it, the unfortunate truth is that there are many of us. We are a tribe, a tribe of people from every continent, and every ethnicity. What links us is this terrible knowledge. We talk to each other, each yelling off our outcrop, wanting to be heard, knowing that each of us is listening, despite the buzzing of loss competing for attention in our heads.

When we start to share our stories we realise that while we have something elemental in common, our stories are very different.

I am going to share some of these stories, so you can imagine. These women aren’t super heroes. They aren’t excessively strong or brave or resilient. They are just people.

Amanda and Eve

On May 2nd, 2013 Texan mother Amanda Uphold went to pick up her five month old daughter, Eve, from daycare to find police cars surrounding the house. Before she had a chance to enter the house a detective stopped her to tell her Eve had died.

“He actually said, “Eva has passed”,” Amanda explained.  “I thought, “but her name is Eve.” We later found out she was put down for her nap swaddled, on a loose fitting sheet and left unattended for over an hour. During that time she rolled onto her stomach and it appears the sheet obstructed her ability to get fresh air. By the time the daycare provider went to check on her she was already gone,” Uphold said.

Eve had been a completely healthy baby girl, and Amanda remembers sharing kisses and smiles with her when she dropped her off at daycare that morning.  Her death was more than a shock for Amanda and her husband.

“I was in shock for quite a while that day. Nothing could have prepared me for that news… When the police were done with their investigation of the scene we were allowed to see Eve and hold her for a while. It was awful to see her like that, but I’m so glad I did. I kissed her a million times and sang to her and told her how much we loved her.”

Amanda said the initial months after Eve’s death were excruciating.

“My heart physically hurt in my chest and I couldn’t stop crying every day. Every single thing reminded me of Eve. After two weeks, I returned to work, but I don’t think I was very productive. I always had to fill the silence because I couldn’t let my mind wander. Music could be too sad, so I mostly listened to podcasts in the car, while I worked, doing chores, etc. I watched a lot of TV to feel numb.”

After three months, the Uphold family learnt that Eve’s death was due to negligence on the part of her daycare provider.

“It was devastating. It felt like I had started the grieving process all over again because what we thought we knew wasn’t true.”

While the pain of losing Eve never entirely gone, the arrival of their second daughter, Marina, 11 months after Eve died, certainly helped to give Amanda something and someone to focus on.

“Her birth was extremely healing and it almost felt like a weight was lifted immediately.”

Amanda and her husband are now expecting baby number three. While to some it might seem like they have moved on, or should move on, Eve is still very much a big part of their lives and they work hard to include Eve’s memory in their lives and the lives of their children.

“We celebrate her birthday every year by doing something fun and I make a cherry pie. We also honor the day she died, even though it’s not a day I like to remember. I usually make a strawberry rhubarb pie because I have fond memories of holding Eve in the kitchen while eating that pie. I talk about her with Marina a lot and show her photos and videos of Eve. Marina’s middle name is Eve and we want to try to honor her in our other children’s names too. We wear red and collect ladybugs to have little reminders of her throughout our daily lives.”

Amanda says now that it has been over three years since Eve died things have gotten slowly easier but she still feels the effects on a very regular basis.

“I’m able to laugh and enjoy life again, but I’m not sure how I feel about that yet. I do think that I will always be a little bit sad on the inside. All of the really great moments in life are also bittersweet because she’s not here with us. I do still have periods of grief-induced depression. I’m able to recognize when it’s happening and just let it run it’s course. The rarity of Eve’s death also affects us. If there is even any probability of something negative happening, it makes me very anxious. Saying something is rare or not likely to happen, does not make me any less worried about it.”

Like so many parents who have lost their children, Amanda says people find it hard to know what to do or say, and one common thing people do is to never bring up Eve. She says it’s natural for people to avoid talking about Eve to her, but in fact she loves to talk about her first daughter.

“I don’t get to say her name everyday like a normal family so I love any opportunity to talk about her.”

I found Amanda in an online mother’s group. As soon as I heard about Eve something shifted. She stood out among the other mothers. Our experiences made us different. We were not the same people as we had been, and these events had isolated us, even in communities where we felt welcomed and loved. I could see across the bay from my ragged cliff to hers, and while there was distance between us, we could see each other.

Amanda says people like us cannot emerge from these situations the same person as we were before, and that can affect how we relate to one another.

“I’m not sure people understand the depths of darkness you go into after losing a child and how that affects your entire life going forward. There is no going back to normal.”

Kristin and Samuel

Children with CHARGE Syndrome often die before they reach five years old. There are so many of us who have lost our children that there is a facebook group set up for those of us mourning our babies. This facebook group is where I met Kristin.

Samuel was Kristin and her husband, Neal’s second child. If he was alive today he would be 19 years old. Like my Eva, he had CHARGE Syndrome, but unlike my experience, Kristin and Neal only got six days with their Samuel.

Samuel was born with choanal atresia which means the bones in his nose were fused over and he couldn’t breath through his nose. He was also blind and deaf and had two heart abnormalities. During his short life he coded twice and started having seizures. He was intubated and was being fed through an NG tube.

Kristin says she began to wonder why they were going to such extreme measures to save him when he was suffering so much.

“We were told that he did not have the sense of sight, hearing or at that time, even smell or taste (due to the choanal atresia), but he still had the sense of feeling/touch.  For that small gift, he would be prodded and poked throughout his life, have numerous surgeries and recoveries and pain.  We were told often CHARGE children come to hate being touched because they associate it with such pain.  It was when I realized the one sense he had would be one of terror, that I realized that by trying to save our son’s life, we were really going to be torturing him,” she says.

Kristin and Neal began talking to doctors about removing the intubation and not taking extraordinary measures to save Samuel. Despite a number of doctors considering this to be a compassionate and reasonable decision, Kristin and Neal still struggled immensely in deciding.

“I spent that whole week sick to my stomach, unable to eat, vomiting when I did, not sleeping, dying little by little with the enormity of the decision and the weight upon us.  I lost every single pound of weight I had gained during my pregnancy during the six days of Sam’s life (like 35 pounds).  The stress was beyond comprehension.  At one point, I actually had an experience that I will call “out of body” in which I felt like I was watching myself from somewhere else.”

They made the decision to remove Samuel’s ventilator and spent the rest of his time with them ensuring their baby knew he was loved.

“We wrapped him in a quilt made by a friend of mine who was a nursing student.  We rocked him, and held him, and kissed him and talked to him and told him over and over again how much we loved him and didn’t want him to suffer, even though the fact that he couldn’t hear our voices made me cry in frustration the whole time.   We told him we believed in Jesus and wanted him to live in peace, light and love and comfort, not in darkness and silence and pain for his whole life.  We cried and cried and cried.  We rocked our son and held him until he died.”

Kristin says she knows some people think their decision was selfish, that they were doing it for themselves, but she says that they were always and only thinking of Samuel and that they miss him every single day.

“On that day, I think a big part of us died, too.  I don’t think either of us will ever be the same.  We are forever changed.  And nobody understands that.  For the rest of the world, it was “over”.  For us, the beginning of living without Sam for the rest of our lives started.  I have hurt every single day of my life since he died.  We felt we were making a selfless decision.  Living without him is agony.  We thought it was the best thing FOR HIM.  Our hearts were broken and frankly, almost twenty years later, they still are.”

While I never had to make a decision quite like Kristin and Neal’s I did make decisions that looking back were not made with a clear head. Grief and child birth and hormones twist your vision and make it impossible to see straight. Kristin says, even 20 years later, she cannot be sure she made the right decision.

“I pray every day that Sam knows how much we will always love him.  I always wondered if I had more time to think about things – everything was moving so fast – if we would have made different decisions about his care and life.  Twenty years later, I still don’t know if we made the right decisions.  I’m still in turmoil about it.  How do you live with something like this and all the after-effects?”

After the shock wore off, Kristin says she was angry. She had done everything by the book in her pregnancy and it just didn’t seem fair that this should happen to her and her child.

I ate well.  I never missed a prenatal appointment.  I exercised, but not too much or too strenuously.  I wasn’t around harsh chemicals and didn’t work in any kind of unsafe conditions.  I have never smoked a cigarette, never consumed any kind of drugs and since I rarely drink any alcohol even when not pregnant, abstaining was not a problem. I knew so many women that didn’t take care of themselves, smoked during pregnancy or allowed themselves a little sip of wine here or there.  I did none of that.   Why was my child born with these problems?  It wasn’t fair.  I was so angry; I can’t even really explain the depth of that anger.”

Kristin says the whole family try to live their life in his honour.

“We live.  We live to the best of our ability.  We never stop loving him.  His picture hangs in our house.  We had a painting made of him since all of our actual pictures have tubes and doctors and he is clearly ill.  The artist who painted the picture used pictures of him, pictures of my husband and myself and the quilt and stuffed animal that we had in his bassinet in the ICU and added all these details to the painting.  When our house was hit by lightning and we thought it was going to burn down, we got our other children out, and we came back in for Sam’s photograph and painting.  It’s the only thing we took with us.  We were lucky and the house did not burn down, but it’s in a moment like that, that you realize what you would actually take.  We would take the only things we have left that remind us of Sam.”

Like Amanda and myself, Kristin finds questions about how many children she has very difficult. One the one hand she doesn’t want to make the person uncomfortable, but to not acknowledge the child that is gone feels like a horrible betrayal. She wants Samuel to be acknowledged as being one of her four children, not just by herself but by the rest of the family too.  

“One of our relatives gave me a Christmas present years ago that was a beautiful representation of a mother with her children, holding their hands – very abstract, lovely figurine.  It is a figurine that comes with any number of children represented.  The one I was given had three children.  I’m a mother of four children.  Four.  I cried.  I put it away.  I never take it out.  It’s a beautiful piece of art.  And it’s all, all, all wrong.  I don’t understand how our relative couldn’t see that.  It feels cruel and insensitive.  It’s little things like this that hurt the most I think.”

These are just three stories. Three mothers who are in that “can’t imagine” position. Our stories are different. But they are also the same. The situations vary but we all want to be acknowledged as our child’s mother, now and always. We all want the child we lost to be talked about and recognised as part of our family. We all want our situations to be different and to not be that mother whose life is beyond imagination. Because this isn’t imagination for us. It’s everyday. It’s real life.

Don’t turn away. Don’t close your eyes. If you can’t imagine, ask. If you can’t picture it, try. Our stories aren’t alien or unimaginable. They are real. We are living them. And they are more common than you think.

 

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