(Amanda's) Disorganized Thoughts- Approaching One Year

I can’t believe it’s almost been a year without Audrey.

I’ve tried several times in the past year to write, but I can never quite put my thoughts together into anything coherent to share.

Many of you that are closest to me have listened to me attempt to share about grief in the past year- I appreciate your patience and understanding as I ramble on, sometimes with emotion and sometimes without, tend to ruminate over the same thoughts again and again, and try to capture the ways that I am missing Audrey, which are so hard to convey into words.

I find the sadness becoming heavier again as the anniversary approaches. I try to focus on what my faith says is true about where Audrey is now and about how God loves and holds her, but the sadness and trauma of the events replay often. The natural rhythms of events that recur annually feel like counting down this year, reliving and replaying our ‘last’ of whichever special time it was with Audrey, leading up to August 7^th-10^th, and what we know now to come on those days. I find my capacity, which had been improving in prior months, diminishing again- and I struggle to focus, work, or have energy for interactions.

Overall I’ve spent most of the past year in shock. It’s such a weird thing to feel numb and confused- surprised each time the thoughts enter again, yet also adjusting to saying out loud that Audrey’s dead and living the day-to-day reality of that dramatic change in our lives, while at the same time not at all being able to comprehend or believe it. It all just feels so strange- as if it happened to someone else, not to us. It feels strange to sleep through the night, it feels strange to read a book, it feels strange to play a board game or sit and watch a movie- the ways our life is quieter now. (We got a dog to relieve the quiet- thankfully that appears to help at least somewhat for Hannah.)

I turn Audrey’s nightlight on every night and say prayers with her every bedtime and continue to hang her school artwork on the refrigerator each month. Her room is unchanged except for the addition of some pictures of Jesus with children that help me to envision Audrey in heaven and try to hold on to that hope.

In the past year, I’ve prayed fervently for Jesus to return so that we can be reunited with Audrey, and (maybe foolishly) believed or hoped it would happen some days, but... alas, here we are.

Physically, the shock and grief do strange things- there's ever-present exhaustion and anxiety, dizziness and vertigo...thankfully, though, I think my hair has stopped falling out. 

I think we’ve done the best we can- which is to say that we may have better coping skills and supports on a continuum than some others do. We have had to at times aggressively pursue the help and self-care we needed and abruptly leave situations that are not helpful. That has meant eight different mental health professionals between the three of us, two churches, changing social relationships and activities, and changing family dynamics.

The grief and processing is also all bounded by being a parent to Hannah, which continues to come first. So, whatever I’ve felt or thought about must live within the bounds of needing to provide a safe, stable, (and even happy) place for Hannah to grow and to grieve as she needs to.

We’ve been really lucky to connect with other support structures for bereaved parents- Facebook groups and organizations that host conferences and retreats, etc. It has been overwhelming and frightening at times to hear from other parents who have lost their children, yet it’s also comforting in a way that nothing else can be- to not feel alone in this terrible thing and to read the stories and experiences of others that have also walked this road.

At one point I said to my therapist that I think our society overuses the word “trauma”, to which he replied that the experience of child loss is surely an appropriate use of the term and I could safely describe it as such. I would say that the first six months for me were spent mostly circling the theme of trauma- replaying events, struggling to cognitively make sense of what happened, struggling simultaneously with tremendous guilt and shame while also trying to process anger and mistrust towards my husband, who was home alone with Audrey at the time it happened. The terror accompanying those early months has subsided mostly, but in certain moments and as we approach the anniversary, it comes back with all of the associated panic, terror, anger, and grief.

One of the most helpful things we did in the past year was to request a consultation with Audrey’s team of neurologists to talk through what happened and her epilepsy, related complications, and treatment plan prior to her death. It was comforting in a way I couldn’t have predicted to have many lingering questions answered and confirm her diagnosis. This was all part of what I have now come to refer to as “the investigation”. In my early grief, I felt intense urgency to try to make sense of what happened (while knowing that’s never entirely possible), to answer any questions about the events, and to put together some kind of narrative to answer the inevitable question of ‘what happened?’.

I often struggle to answer questions- “how are you?”, “how many kids do you have?” I often feel compelled to share that I have two daughters, one of whom is in Heaven, because most often when I’m meeting people who don’t know our story, I so strongly want to talk about Audrey and to include her in any introduction of who we are as a family or who I am.

For as much as Jeff and I experience this, I’m also aware that Hannah experiences these same struggles in ways that are unique to her. Other kids ask her if she’s an only child- sometimes she says yes because she doesn’t want to disclose. Some kids and adults say stupid or mean things. She misses Audrey in situations and ways that are unique to her and their relationship. I’m thankful that Hannah has been willing to disclose to us sometimes when she has these experiences, although I’m sure she’s not telling us all of them. Unlike the communities Jeff and I have found, it’s been much more challenging to find a community of support for bereaved siblings. We’ve participated in each opportunity we’ve been able to find, and we have also included Hannah in some activities that are more geared toward adults, where she has been mature in her responses and able to reflect what resonates for her.

Losing Audrey has pulled Jeff and Hannah and I together in an insular way that is different than before and different, I think, than other families. That doesn’t mean that we’re always feeling connected- in fact, it’s often with mistrust, pushing one another away, and grieving separately, while also knowing and feeling deep in our souls that no one else truly knows and experiences this the way the three of us do, and never will.

Similarly, being away from home is hard. I feel most whole when I am in the places that Audrey has lived and touched. When we’ve been away, I long to get back to her room, to visit her at the cemetery, to reconnect with her friends and family. Travel has provided a life-saving distraction in the past year, and we try to bring Audrey with us in all we do, but being far away is difficult. It’s such a relief to return home to the places where Audrey is remembered and talked about and loved, the way we love her, by people who know her and us. It feels like her spirit resides here- in these places and relationships.

My faith has helped me. Thus far, I haven’t been angry at God (though that may come at some point). If I am angry at God at all, it’s that it feels like it’s taking too long for His Kingdom to come and make us all whole, and the world feels too dark sometimes, and I no longer have a good sense of my place in it.

The word “lost” resonates a lot- with its dual meanings: 1) something that has been taken away and cannot be recovered and 2) unable to find one’s way, not knowing one’s whereabouts. Both feel true.

The prayers of others- especially those of you who I know have committed to fervently lifting us up and let us know the ways that you are praying for us regularly and often- have really helped in ways that are difficult to explain. We feel it- that’s the best I can say- in the hardest times and when we’re lost- we can feel the help and caring of others and a guidance or hope that only comes from that prayer.

The ways that many of you have come alongside us to remember and honor Audrey has meant so much to us. Please know that in very real ways, doing so keeps Audrey with us, keeps her spirit close to us, tangibly, and helps us to have a reprieve from the deep emptiness and longing of loss. You continue to bring her light and love into our lives and community, and this has made you our family this past year. Thank you for continuing to say her name and post her picture and do things to honor and remember her.