Hi, I’m Ana Maria Romanow, Phillip’s mum and today I want to talk about something I never knew existed until I lived it: anticipatory grief.
I started living with this kind of grief when my son Phillip was just a month and a half old. That’s when my family and I were told he had a rare, terminal condition called Menkes disease. The doctors looked at us with such quiet sadness. They said there was no cure.
In that moment, our whole world changed. All the dreams we had for our little boy just vanished. There were so many “goodbye” moments, even before the final one. I grieved when I realized Phillip wouldn’t crawl, walk or go to school like other children. And when he began to lose the little skills he had gained, it felt like watching him slip further away. Every missed milestone was another silent heartbreak.
We hadn’t lost him yet, but in many ways, we were already grieving. That’s what anticipatory grief is: grieving the loss of someone you love while they’re still with you. It’s the heartbreaking in between. And it’s one of the hardest things I’ve ever faced.
And then came the comparisons, something I hated but couldn’t stop. I would see babies Phillip’s age doing well, hitting milestones, laughing and learning. And while I was truly happy for those families, it also crushed me. Not because I didn’t want those kids to be okay but because I so desperately wanted my baby to be ok too. I wanted that future for him. For us.
One of the things that truly helped me during this time was therapy. Being able to talk to someone outside of my family and friends gave me the freedom to say what I really felt, without fear of hurting anyone or being judged. In therapy, I was simply heard and understood. That safe space became so important for my mental and emotional health, and I’m grateful I had the support to navigate those incredibly heavy days.
So, why does anticipatory grief hurt so much?
Because it’s not just one loss, it’s hundreds of little ones. It’s grieving while loving. Hoping while preparing. Holding on while letting go. It’s showing up every day for a child you love with your whole heart, knowing that time is not on your side.
If you’re reading this and living through something similar, please know you are not alone. Anticipatory grief is real. It’s painful. But it’s also a reflection of deep, immeasurable love. You are allowed to feel it. You are allowed to talk about it. And you are allowed to ask for help.