What We Should Be Doing

Seven months ago my beautiful boy left this earth and my world is forever changed. It has been 7 long months since I've seen his smile and heard his laughter or felt his arm hooked inside mine.  If you would have told me a year ago that I would lose a child and I'd still be standing here, living my life, going to work, taking care of my family, seeing friends, I would have said no way. In fact, the day he died, I wailed in disbelief and said "I want to die." How could I go on living without my son?  But I'm still here. I continue to find beauty and joy in this life although my heart is completely shattered. I continue to make plans for the future with my remaining family, although there's a huge gaping hole where my son once was. 

So many people say to me "thinking of you during the holidays" and "the holidays are going to be so difficult for you all."   And I have to say- the holidays are not difficult. I mean, every day is difficult. Every day I feel grief at the absence of my precious son. It has been no greater or no less since the holiday season has begun. 

Every day since my beautiful boy went to heaven, I've felt like I'm in the process of rewriting my agreement with reality. At one point in my life, my reality was that I was the mother of two healthy children. I felt so blessed that everything had gone according to plan in both my pregnancies. I marveled at the miracle of life.  It seemed like so many little things could go wrong but absolutely everything went right. Then I rewrote my reality when my son was diagnosed with a rare epilepsy disorder, then an intellectual delay, then autism, adhd and sensory processing disorder.  That was fine. It was all things we could live with.  My new reality was that I was a mom of a special needs kid and we had some new things to navigate.  And he was cool and quirky and hilarious. I didn't care much if people looked at him strange or rolled their eyes and neither did he. He was unique and amazingly pure and sweet but also quick-witted and snarky. And now, I'm in the process of rewriting my reality as a bereaved mother. Someone who gave life to a child and never got to finish raising him. 

As a newly bereaved mother, Christmas isn't much different than any other day.  Axl's absence is felt always. I hope that I don't feel this sadness and grief always but I know that I'll never stop missing him. I miss him when I'm driving to work in the morning and suddenly realize that I'm just by myself, listening to music and there's a deafening absence of constant jibber jabber coming from the back seat. I miss him in the mornings when I'm peacefully going about my morning routine and there's no screaming and fighting and crying between Axl & Layla. There's no squealing and giggling and playing either, though.

I miss him when I make a simple quesadilla for myself for dinner and I know that no one will ever appreciate a quesadilla like he did. 

I miss him when I wake up in the middle of the night and hear a door slam upstairs. I bolt upright, in flight-or-fight mode, ready to jump out of bed and run up the stairs so I can escort him down the stairs rather them him traversing the stairs on his own and risk a tumble from a seizure. Then I remember it's just my daughter going to the bathroom. Axl is no longer here. 

I miss him when I come home from work and no one is waiting to greet me and ask me "What are you making for my dinner?" I miss seeing the holidays through his eyes because everything was quite magical to him. He loved Christmas and all the holiday traditions. When he opened his presents, he would look up at the ceiling and whisper thank you to Santa. We didn't do many of our typical holiday traditions this year. No Festival of Lights, no holiday trains at the Museum Center, no lights displays, no baking Christmas cookies. 

Everyday I can't help but think about what we would be doing if Axl were here. Well, today, we'd be on his Make-a-Wish trip. Back in 2020 he was granted a wish. He wanted to go on a train trip. He kept calling it a "hotel train". But since the pandemic, Make-a-Wish had some travel restrictions so he decided to take a trip to the Kennedy Space Center. I tried to get him to request that Billy Strings play his birthday party for his wish but he was more into traveling. So we were going to drive to Cape Canaveral and stop in Gatlinburg for a night. We visited Gatlinburg last winter and he loved it. He kept saying he wanted to go back to "Burglin."  So today, we should be ringing in the new year in Florida, celebrating Axl's wish trip and enjoying time with him, rather than feeling this gaping hole in our hearts.

New Year's Eve 2020  
Axl enjoying a rare filet mignon, looking like a boss.

In the blink of an eye, our lives were forever changed.  I didn't think I would go on living for seven whole months without my son but I did. And now I'm finishing this year as a completely different person than I was when the year started. And hoping and praying that Axl is in the most wonderful place and I'll be reunited with him one day.

Our last day together 5/30/22