Amanda's Post (...forewarning- a little heavier...)

So, Jeff has been writing this blog. Truth be told, I’ve had mixed feelings about it. While I love any opportunity to talk about and celebrate Audrey, being immersed in the day to day of guilt and grief that is this season hasn’t left me wanting to be very extroverted about any of it.

As someone who already runs pretty awkward and insecure in most social situations, layering grief on top just adds fuel to that fire. Grief makes your brain foggy, so suddenly I can’t think straight and my memory is shot, so I say something stupid in a conversation- cue the embarrassment. Grief drains your energy and productivity, so I take less self-care, look older, and struggle to make casual conversation- more awkwardness. The inevitable (normal) questions, “How many kids do you have?”, “What happened?”- which are totally ok to ask- I can’t seem to figure out how to answer sometimes.

It’s funny how the first thing anyone says about grief is “Everyone grieves differently” and essentially, to give yourself some space, yet my brain’s immediate reaction is to judge and shame everything I think and feel- I’m not crying enough. Crying all the time won’t bring her back. Maintain normalcy. How can you go out as if you’re acting like nothing happened? Honor Audrey with your words. Don’t share anything too personal…

The truth is, the biggest part of the loss right now for me is dealing with the guilt and shame. We weren’t able to keep her safe. It was our job. We fought for years to keep her healthy and alive and to give her what she needed- fighting seizures, medication changes, side effects, hypertensive crisis, behavioral needs, insurance barriers, adaptive equipment, wait lists, COVID, securing services and supports…and we lost her anyway. Our daughter dying is just too terrible and horrible, so the guilt pervades all of the other emotions, thoughts, and interactions right now for me. I’m told this part gets easier with time and therapy- I’m actively working on it.

As the days and months pass, now the shock begins to wear off (although I often still find myself shocked- as if it’s new information that I don’t yet know how to make sense of… like when our incredible family at the Superhero Center hung Audrey’s dedication picture on the wall- it is a beautiful tribute and we feel their love for us and her, yet somehow in that moment I still feel too stunned to know what to say)- the ache of her not being here sets in more. I now understand better when people say the shock is a comfort at first- we somehow dealt with the acute pain better than I would’ve thought, but the longer, more chronic pain of a lifelong loss/injury is a different kind of aching, gnawing feeling. Sometimes it’s not as noticeable, but we’re definitely not whole.

Hannah slept in her own bed last night for the first time since Audrey died. I think she was more ready for it than I was. I still wake up in a panic and have to check on her to make sure she’s breathing a few times per night. But her new puppy kept her company and they probably both slept better in their own space. Hannah’s community of support and her maturity in using the coping strategies available to her is remarkable. She has good language to talk about her grief when she needs to, and she is able to move between activities and emotions in the way that kids’ brains work differently than ours, and that probably spares her from feeling grief pervasively all the time.

I used to feel bad for (possibly) spoiling our girls. (…See, there’s that guilt thing again.) Mostly, I liked to throw the girls themed birthday parties, and I probably spent more money than necessary to make those days and other holidays special for them. (Because I think for little kids, the “wow” matters- and life should feel magical once in a while.) Now, I’m so thankful for every single thing we and others did to make Audrey happy. First of all, she was so sweet and couldn’t care less about anything materialistic anyway (except food- that she definitely cared about). But every memory where we danced with her, sang to her, cuddled her, wrestled her, fed her ice cream- it all makes the pain of loss sting a little less.

The other day, I found a Cinderella doll I had gotten for Audrey and Hannah during the one work trip that I took away from them. I traveled to Atlanta in 2023 and I had Jeff read the girls a Daniel Tiger story about when your mom travels for work, and the characters find little scavenger hunt gifts each day until mom returns. So, we hid gifts (thanks Jeff) and they followed the clues each night via facetime until I got home on the fourth day. Somehow, the Cinderella doll was promptly lost immediately after opening and I never actually saw it, but always wondered what happened to it. So, I moved a chair in Audrey’s room this week, and there she was (I have cleaned her bedroom in the past year, I swear). It was a sweet little reminder of those little things that made her happy. My therapist suggested that maybe Audrey was trying to share a little something about the good we did, in contrast to my feelings of guilt for our failures. If so, thank you baby girl, I needed that.

Jeff and I were also reminiscing this week about one of Audrey’s favorite staff at Caravel (I won’t name her here), who Audrey loved for lots of reasons, but also because I’m pretty sure this awesome lady gave Audrey almost whatever she wanted. She fed her extra snacks and let her play Disney songs as much as she wanted, and never failed to indulge Audrey for some laughs, hugs, dress-up play, or a dance party. Man, do I love that! We were already so grateful for Caravel and her Superhero community, but for those who loved her so extraordinarily and brought so much joy to her life- you’re forever part of our family. Thank you.

I say it often, but it’s worth repeating. Every single prayer, act of remembrance, and word of support is like gold to us right now. Somehow in this deep sadness, it brings in a little light to know that we’re not so alone and that others are continuing to love Audrey and remember her. The faith I try to hold on to is that those acts of love, and our ongoing love for Audrey, transcend whatever space is between us, and that she can still feel held and surrounded by that love. Thank you for lifting us up and for loving (and continuing to love) our baby girl.