It Doesn’t Get Any Easier (Amanda's)

 

When we first lost Audrey, people often said, or we read in grief books, how in child loss it doesn’t get any easier. There was always some variation of: 

It’s hard to know what “it doesn’t really ever get any easier” means when you’re first in the throws of it though, and the shock is so intense. I’ve also come to understand that for me, personally, the shock has been profound and longer lasting than for some others. 15 months in, it’s still really hard for me to grasp most days that Audrey is gone, and that it’s permanent.

But it truly isn’t any easier than it was in those first weeks. Which is really hard to fathom if you think about it- How can our world still be as rocked and shaken as it was then, how can this still be as painful and sad and traumatic as then?- Yet it still is. The sadness seems only to grow deeper and the fullness of missing all of who Audrey is continues to grow in our lives.

Our family wasn’t complete before she came into our lives, and now we are incomplete again and will always be. Too small for our liking, and feeling somewhat isolated as just Jeff, Hannah, and I.

That’s not to say that we don’t have a good community of support- because we do. We have an incredible community that has sustained us in ways during the past year that I don’t think we would’ve survived without, but time does begin to alter naturally. I generally still can’t answer “good” or “fine” in response to “How are you?”, and that gets tiresome after a while (not to others, but to us). I feel as if I don’t know how to re-balance my relationships at times, despite also knowing that so many people are going through their own things that are also really hard and sad. We have friends and family facing cancer, infertility, loss, divorce, unemployment- it just all seems like a lot of grief all around. For our part, I think we mostly hide it well. Not that we’re trying to hide it, just that we’re used to keeping on keeping on with whatever the next responsible thing is that stands before us, so we just do.

But we’re truly not the same at all. Hannah has grown up so much in the past year- and while her blossoming maturity and dare I say, responsibility, is wonderful to discover, there’s also a sadness because she’s lost much of her childlike innocence and light-heartedness. She’s rarely silly anymore, and with only Jeff and I around, much too serious for her age.

Jeff and I have apparently entered the stage of grief where our physical health takes a dive, and we’ve had a few too many scares and visits to the ER in recent months. Hypertensive crises, early stage heart disease, panic attacks, vertigo, adverse reactions to medications to treat the symptoms, and continuing to try and tease out what is physical (aging, perimenopause) and what is grief-related. (Pretty much all symptoms get attributed to grief at this point, which feels rather dismissive).

There are secondary losses- I miss coordinating the girls’ outfits; I miss Disney being a daily part of our lives that doesn't feel sad; and the other day a co-worker was sharing about her many grandchildren and I felt sad knowing we’re always going to be a small family. I even miss things that were difficult and frustrating when Audrey was alive- how hard it was to get her in and out of her car seat, and adapting our home and activities to meet her needs.

And even though 15 months have passed, we still struggle with the narrative- how to talk about what happened and how to process it. Did Audrey die suddenly? Yes. Was Audrey sick for a long time? Yes. Did Audrey die from epilepsy-related complications? Yes. Did Audrey die because of a medical emergency/ accident? Yes. Did Audrey die because we had to make decisions about continuing interventions after brain death at the hospital? Yes…. Those parts of the story are rarely discussed, and still after all the hours of therapy, bereaved parent conferences, support groups, and trauma work, it feels like we’re only at the very beginning. I do know it’s getting more difficult to talk about as the shock subsides. Previously, I could share information with a level of detachment as if the events happened to someone else. Now, the detachment isn’t as profound, so the fear and guilt and avoidance make it more difficult to venture into those areas.

The holidays, as one would expect, add an extra layer to the grief. The loss takes what was once celebratory and layers sadness over it in a way that changes how we experience this time of year. Jeff, Hannah, and I were able to see the Magnificent Mile Festival of Lights Parade yesterday, but we spent most of the time thinking of and talking about Audrey. 

It’s also been a really stressful and busy time in general. Work has been tough, and we’ve also invested a lot of time and concern with the Superhero Center recently. The center is such a special place to our family, but in the midst of transitions and challenges, we’ve felt worried about the longevity of this special place.

This blog is long, but I’ve been wanting to write for a while and it always takes me many starts, and usually several weeks and months before I can put the words together.

I miss so much about her. As time passes, the memories feel further away, and in turn, she feels further away. I hate that. It happens without any volition or choice on our part, and we’re left with an ever-present feeling of longing and incompleteness, but less of the sense of who she would be in these moments and in our life now. We never got to know her as a six-year-old, so we can only guess at what she’d look like, be like. 

When I look at these pictures now, I realize that when Audrey was here, I never noticed that she looked at me like that. When you’re a mom and you’re always busy doing all the things, you maybe don’t notice. I’m thankful now that I can look back and see how much she loved me in addition to how much I loved her.

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Finally, for anyone’s consideration who is interested, I think the Grief Stages modeling probably should include some adaptations for the experience of child loss, so here are some meandering thoughts on that: 

1.      Acceptance never occurs and is never an option. Child loss is unfathomable; it is an unacceptable reality. It is against the natural order. The best that a bereaved parent can experience is integration. Over time, the loss begins to be integrated in to your life, though one is not able to ever accept it or to deem it as acceptable. It is by definition not acceptable. Integration looks like continuing to engage with life while continuously carrying the loss of your child with you, reimagining family traditions and milestones to integrate the lost family member, and developing ways of cognitively coping or making meaning of the loss.

2.      Shock is the first stage, not denial. Denial implies more of a cognitive process, shock is physical. Your body does things without intention on your part, there may be no cognition or emotional attachment to what occurs. Shock has many implications that are outside of cognitive or emotional reactions, including sickness, mental fog, dramatic changes in energy, concentration, inappropriate or strange emotional expressions, thoughts that may be irrational, and rapid onset psychological illness despite having no prior course or history. Regardless of the circumstances, the loss is at once traumatic, horrific, and terrifying, yielding ultimately a dramatic change in the parent’s daily reality, sense of identity, worldview, and social constellation.

3.      In child loss, unfortunately, there is a stage of social reorganization. This is often not selected by the bereaved parent, but by those around them who struggle to remain present in the face of tremendous horror and despair. In some cases, it may be initiated by the bereaved parent, as some settings and relationships are too painful to continue and one experiences a certain and immovable shrinking of social capacity and willingness to accept those who have not loved your child (in their life and in their death) as you do. In some cases, this social reorganization occurs because of the practical and circumstantial changes of child loss- you may not be involved in parent’s groups, sports clubs, or activities that were a part of your child’s life following the loss. This stage is often accompanied by secondary pain and grief for the bereaved, and the loss of relationship and support is hurtful. The task of this stage is to navigate resentment and bitterness and to arrive at a new social reconfiguration with an ability to experience and offer grace where others provoke hurt.

4.      A critical and overlooked component of anger is guilt. Guilt is anger at self. Many bereaved parents experience anger at others and God in relation to the loss of their child, but also for many of us, anger at self is paramount. Guilt in child loss is different than guilt that is common to other losses. Where one may feel guilt that they didn’t have a last visit with a dying relative or said words in anger at one time, as a bereaved parent, there is a certainty that the responsibility for your child’s death rests with you. What is a parent’s job if not to protect your child and care for them and keep them safe?

5.      The stages of grief make much of depression, but say little about anxiety, which I think is a significant oversight. PTSD, panic disorders, anxiety about losing other children, and so many other areas of fear and trauma accompany child loss that may manifest in physical ways, as much as cognitive or emotional. Anxiety is a significant correlate of grief and is especially so for bereaved parents who navigate a world of minefields and have experienced the unimaginable and yet are faced to continue life with that fear realized.