Currently, that phrase comes out of Everett’s mouth multiple times a day. Right after Brett died, my first reaction was to actionably take care of Wheeler more than Everett. I knew Everett wouldn’t understand the details or what was going on. I had no clue where to even begin, and truthfully wasn’t even processing that there were things I needed to do or not do when it came to Everett and the grieving process he would go through. It was easier with Wheeler because he knew what happened and we could verbally communicate. I immediately put my energy into being his constant and steadfast safe place. None of that was true with Everett. I had no clue what to do. In a bit of divine intervention, we already had an intake appointment for the Tuesday after Brett died with the clinical director at the Autism Center of North Mississippi. Everett was starting a new social program there and we were scheduled for interviews and goals of the program. I questioned keeping the appointment but it would be more than a month before we could reschedule so Clay and I went ahead and took him. I wasn’t looking for help at the appointment, but like so many other things with the autism in our lives, help showed up when I didn’t know I needed it. In the appointment, we were given VERY clear instructions on what we needed to do and what we did not need to do.
1. Have the conversation with him that his Dad died. In the conversation, we were to use very simple phrasing. “Daddy died. Daddy is gone”. I have repeated this phrase hundreds of times in the last 8 months. The simple language was emphasized as extremely important. We weren’t supposed to use terms like “better place”, “resting or sleeping”, and “Daddy’s not coming back”. Again, the negation of the fact he would hear and process “coming back” and not pick up on the “not”.
2. Have memory options available to him at all times. Photo albums, videos, and items that belonged to his Dad. I ordered a couple of custom board books that only contained pictures of Brett. He also watched the memorial video from his funeral. He looks at his Daddy book daily. It’s never far from him.
3. He needed to attend every event of the funeral process but not physically see him in an open casket. We did all of those things, but I don’t feel like it really registered to him what was happening because being at the funeral home was so natural for him (some of you may not know, but Brett worked for his mother who owns the funeral home). Seeing his body would’ve been too traumatic and he just wouldn’t understand.
We were told it would take 4-6 months before the gravity and finality of the situation would hit him. Everett’s grief would be unpredictable (like so many other things with autism).
In the early weeks and months after Brett’s death, Everett was very tuned into the fact that his Dad was gone. In early February, Everett asked to go to his Daddy’s house. I repeated the phrase “Daddy died. Daddy is gone”. A couple of minutes later, he brought me a key and asked “can we unlock gone?” In March, we began the process of cleaning out Brett’s house. We decided it would be best for Everett to be there because visually it would be easier for him to understand that his Dad was no longer at his house. Everett loved being back in the house. He immediately went to playing with his toys and doing his normal routine when he walked in the door. It also helped to be able to spend time with his grandparents, Wheeler, and I. We were in and out of the house multiple times over the next month and Everett was always eager to go, but seemed to understand that his Dad wouldn’t be there.
During those early months, Everett developed the fear that this might happen to someone else that he loves. He would steal my phone and call Wheeler without me knowing and always started the call with “Are you safe?” He still calls out my name nightly in a panic, just to make sure I am still here. In early May, he began having aggressive meltdowns that are triggered by his grief. About a month ago, they become more frequent and intense. We think the routine of getting back into school, and not resuming his normal weekend visits with Brett has made the reality of the situation come to the surface. In a nutshell, he thinks Clay and I are not allowing him to see his Dad, and he is very angry at us about it.
Another question/phrase Everett has used regularly is “I can’t die” and “Mommy can’t die”. When he says this, I tried to reassure him that we are not going to die (which believe me – I’m not lost on how untrue that actually is). But a couple of weeks back, I’ve come to the realization that this phrase isn’t out of fear. His use of the term “die” is directly correlated with him not being able to see his Dad. Die to him is the one thing that could possibly unlock his ability to see his Dad. So, I’ve been telling him no thinking I’m comforting him, but most likely I’m the person he thinks is not allowing the reunion to happen. I’m not 100% on this – as with everything related to raising Everett – it’s just my best guess.
At this point, we have sought out many professionals to help us navigate this uncharted water. My counselor made the analogy to imagine if you were 12 years old and your father died, and you and everyone else in your life had your mouth’s taped shut. You can’t explain to them and they can’t explain to you. That is what Everett is experiencing, so no wonder his frustration level is so high. He has started grief counseling with the psychologist at the Autism Center on a weekly basis. We have two goals for his counseling. The first is to get him to understand that his Dad died, he misses him because he can’t see him, and that makes him sad. The second goal is to address his fear that this will happen again to someone he loves. We have new techniques in terms of phrasing and directions to go in when he brings it up. As we work through this it’s a constant subject that he is thinking and talking about. It doesn’t matter where we are. Just this afternoon, we were leaving the grocery store and Everett very loudly and enthusiastically stated “Daddy died!!” as if he were a cheerleader routing for the home team. And while none of this is funny at all, I can’t help but chuckle at his ability to make everything so awkward. And I love him so much for it. Brett’s death isn’t harder on him that it is on Wheeler, it like so many other things with autism is just different. Grief with a side of autism. His grief is unpredictable as they predicted, but so is everyone else’s. You don’t know when the bad days or moments will hit.
As we navigate this Shit Sandwich (I apologize for cussing but there really is no other way to describe this) that life has served up to us, I can’t help but think of an ongoing conversation that I have with a close friend who has also had more than their fair share of the same sandwich. We remind each other that even though we’ve walked through our “anything but that” moments, we aren’t immune or protected from more of those types of heartaches happening again. I can’t lie that I am weary from watching my children suffer the way they have over the last year. I couldn’t predict how sharp the pain would be for all of us. But as time slips away and we settle into the reality of a life without Daddy; I hold tight to the perspectives and new lenses that this has had on my life, because what it has taught me that I will never lose is how important it is to live in the joy that shows up everyday. And you can’t experience the joy without being grateful in the moment. My life right now literally is lived from moment to moment and while that is specifically about surviving the low points because I can’t process anything else, it’s also given me the ability to notice every minuscule bit of good that is also there. I’ve emotionally been busted wide open and I’m on the brink of tears a lot of the time. Sometimes the tears are sadness but just as often it’s rejoicing. I don’t have time or energy for things that are trivial. I want to teach my children that being able to experience our raw feelings doesn’t make us weak, but actually the willingness to be vulnerable makes us the strongest people we can be. I want them to know that I’m not scared to go ahead of them, pave the way, and shine the light on the path that leads to a life filled with wholeness. Because if we’ve walked through this and don’t come out better on the other end, all of this suffering that we’ve had to endure is wasted. I’m grateful that I can be Wheeler and Everett’s anchor and I know deep down that it’s my life’s greatest work.