The Grief No One Warns You About
I didn’t realize I was grieving at first. For a long time, I thought I was just overwhelmed, emotional, or struggling to adjust (full transparency — I was all those things). It wasn’t until recently that I understood what I was feeling wasn’t just stress…it was grief. Not grief over losing my son, but grief over the future I had imagined for him.
Once I realized it was grief, everything started to make more sense. The sadness that came out of nowhere. The heaviness I couldn’t explain. The moments when I felt disconnected even while being fully present. I wasn’t grieving my son — I was grieving the expectations I hadn’t even realized I was still holding onto.
When I was pregnant, I had all these expectations of what it would be like to have a baby of my own. What it would be like to see him for the first time, to watch him crawl, to see him take his first steps. I wondered what it would be like to hear him say “mama” or “I love you” for the first time. Some of those expectations were spot on, and some…not so much.
Some milestones I assumed would come easily — like saying “mama.” It seems like such an easy word, right? But for a child with autism and a speech delay, it’s harder than most people realize. Slowly — and I still am — I’ve had to let go of many of the expectations I had, because things were simply not going to happen the way I imagined. Our lives look different, and that’s okay.
I love my son exactly as he is. I wouldn’t change a single thing about him. And yet, I found myself feeling so guilty and selfish. I kept asking, “Why did it have to be my son?” I felt guilty for thinking, I didn’t ask for this life. I felt guilty for mourning the expectations I had, when other people have struggles that seem so much bigger. My son was healthy and happy — I shouldn’t have felt this way… and honestly, sometimes I still do.
Grief shows up whenever, wherever, and however it wants. It can disappear for days or weeks, and then reappear every day. For me, it often appears in simple, daily moments — like seeing other children, younger than my son, becoming potty trained or playing in the snow. It hits me and reminds me that he is autistic, and some things that seem small to others are big challenges for him. Autistic individuals often excel in one area while struggling in another, and even at 4.5 years old, I see this clearly in my son.
Grief is part of learning a new reality. I always thought grief was about physical loss, but it doesn’t have to be. For me, it was grieving the life I expected my son to have and coming to terms with the fact that his life may be a little harder than I wished it to be. As his mom, I want nothing more than for him to have an easy, happy life.
It’s been almost two years since his diagnosis, and I am still grieving. I’m not sure when I will be done. I don’t want to say I’ll feel this way forever, but right now… it feels like I might. Some days feel so much heavier than others. Some days, layers I thought I’d passed resurface, and the feelings come rushing back.
I’m learning to accept that grief and love can exist in the same place. That I can mourn the expectations I once had while still celebrating every part of the child in front of me. That some days will be heavier than others, and that’s okay. I may not fully be “done” processing his diagnosis, and that’s part of the journey. But even in the sadness, even in the layers that resurface, my love for both of my children remains unchanged - and that love is what carries me forward, day by day.
