How I Accept the Grief of Losing My 9-Year-Old Son

It has been nine months since our 9-year-old son, Landon, passed away after a lifelong battle with Sanfilippo syndrome – a rare and terminal genetic condition in which someone is missing an enzyme that allows their body to break down waste materials at a cellular level, leading to progressive and irreversible damage to the brain and all organs.

And this seems so significant to me for some reason: Landon left this life on the ninth day of the ninth month in the ninth year of his life. And here we are, nine months later, still living in disbelief at times, but still living nonetheless. Still moving forward and still loving our boy as fiercely as when he was here. Still carrying his memory, sharing his life and legacy into each day, still missing him. And those are things we will always do – always with a heart that isn’t quite whole, but always with love, with joy and with appreciation for having had someone so outstandingly beautiful in our lives to love and to miss.

The grieving process has been… strange. And unpredictable. And a million other little things. For a while I felt as though I was doing OK. Life seemed bearable, I had found a new normal, and I was doing better than I ever thought I could so early on. And then last month, I went back to the beginning. I was living in unbearable heartache again, living for the times I could be sleeping and feeling like maybe I would never really be able to move forward because the pain would always find a way to pull me backward. I was afraid the further away I got from the moment he left this life, the further away from me he was, and it ignited a panic in me that made everything feel dark.

I have been grieving in one way or another since the day my sons Landon and Blake were both diagnosed with Sanfilippo syndrome in 2010. After five years, I thought I had been through every cycle and would be familiar with how the grieving process went when the time inevitably came to say goodbye. But I was wrong. Now I know – there is no way I could have ever been prepared for this. Because the process of grieving the diagnosis is completely different than grieving a child who is now only a memory.

I am now starting to see that my grief is not linear, but circular. A circle has no end. My grief encircles my life, and my son is at the center. And no matter how far away from his life I get, he will always be at the center of my love for him and the grief I carry in his absence. That realization has helped me accept my sadness as a gift. Landon is gone, but I still carry him.

My grief makes that possible. My grief is the internal torch I carry forward. My grief is my reminder that he lived, and a part of him always will because I can feel the grief inside of me at every single moment. I know it will be easier at times to remember and accept than at others. I know the circle will inevitably always bring me back to those seemingly unbearable feelings of emptiness from the beginning, but I also know that’s OK. Because my grief will continue to move and change for as long as I live. I will let that natural process flow and try and remember part of loving someone so intensely is grieving their absence with equal intensity. Grief is the other side of love, and because my love for my child will always be endless, so too will be the grief I feel in his loss. And that is a cross I will always willingly bear for him.

Tough milestone days are coming, and I’m sure with those will come new aches I will need to navigate through, but today is not the day for those worries. Today I will try and find comfort in the acceptance I feel in this moment – not worry about when it will change into something else or how I will cope when it does. Today I am OK, and I will let that be enough.