Coming up on the first month of firsts since Noah and it’s getting so much harder. With each passing second I miss that face, that palsy smile and kiss, that awkward gait he had when he walked, those tickle fingers, and even those sneaky fingers creating mischief just a little bit more.
Sadly, being part of the CHARGE community I have seen friends and acquaintances and strangers go through this immense loss and I shed tears at home along with them and always wondered to myself: How do you come back from losing a child? From this?
Now I know.
You don’t. You can’t.
A piece of you is gone forever.
It’s a pain that you cannot even describe. You can’t even imagine what it is like. It’s unlike any other loss I have experienced. The physical pain that comes with this grief is almost unexpected. You hear glimpses of how painful it is, but you truly cannot understand until you hold your child lifeless and/or say your final goodbyes and even then you can’t understand or describe what your mind, body, soul is experiencing. It’s relentless. It’s torment.
The minutes after we realized Noah left this world were very, very similar physically to those final moments before he came roaring in. Something primal happens when you experience the loss of a child. I had no control over the sounds and groans and tears that were coming from my body. All control is lost and you just have to ride it out. It’s like I was watching someone from across the room. An out of body experience. Very much like those early minutes of June 1. I had to be reminded to breathe in those moments too. You do not have control of your tears, your body, or anything. And just like the moments after birth when you realize your life is forever changed and will never be like it was even minutes before; when your child dies you realize your old life is over and you don’t have a way back to your life. Instead of your heart growing 2 sizes, you forever lose a piece. I don’t think it’s possible to feel whole again.
I honestly dread this year of “firsts”. Firsts without Noah. It’s awful. He should have had his Kindergarten graduation yesterday and taken his photo on the steps with his brothers and sister. But instead, he’ll forever remain a 6 year old in Kindergarten. Everything from June 2, 2018-June 1, 2019 will be a first without a piece of my heart. A constant reminder of what should have been.
I still can’t comprehend this is now our life. I can’t even count the number of times I have questioned and cried out, “how is this our life?!” I think that is the first sentence I uttered when I got off the phone with 9-1-1 and I walked out into the hallway while all resuscitation attempts failed.
We honestly thought learning to become parents of a child with special needs was our greatest hardship and then ultimate joy. Our life’s purpose. Now that purpose is gone. This can never bring joy. We’ve spent years on the outside of parenting groups and activities because our life was different. We knew that. Many people couldn’t relate. Wouldn’t relate. Or between appointments we couldn’t participate as we had hoped and dreamed many years before. Our lives were different. I lost the ability to just be “Mom”. I envied those who had all the typical parent of a young child issues. I lost my ability to relate to others who had children who were typical, but I did try. I know I wasn’t completely alone in our world. We did keep a core group of friends and acquaintances who didn’t know what it was like to have a child with special needs but they loved on him and us and gave us support any way.
Now I’m back in this alternate dimension where I feel like I don’t fit anywhere, just like those early early years after Noah was born. Now I don’t have a child with special needs living in my house any more. I don’t have therapists in my house 3-6 times a week. I don’t have to worry about constant upcoming appointments. I don’t have to worry whether my son was going to feel excluded or targeted because of his differences. “Luckily” we never got that far. He never felt anything but love and kindness and for that I’m so grateful. I don’t have to keep my house tidy if I don’t feel like it this day. I don’t have to get out of my pyjamas if I don’t want to any more. But now, I am part of this group of bereaved parents and I honestly never thought I’d be here either.
I know we’ll learn how to navigate this. It won’t be easy. There will always be moments that will take my breath away. There will be moments that hurt more than I ever thought possible. There will be moments when for a split second I forget and it all comes rushing back. Joy will eventually creep back in and we will find ways to feel happiness but for now, there is a lot of empty and a lot of heartbreak and a lot of physical pain.