Erin's child, Kreed, was diagnosed with nonverbal autism [1] as well as a variety of other health problems. However, because of his inability to communicate, the depth of his health issues weren't known [2]. After three months in the hospital, the 18-year-old passed away due to a variety of health issues, and his passing left those around him stunned. "His breathing difficulties began, as he silently marched toward his death without a soul knowing for months," his mom, Erin, wrote on her blog six months after his death [3].
Now that it's been a year since her child's tragic [4] and unexpected death, Erin is bravely sharing what she's learned from her journey. "Nobody really knows this grief journey until you've traveled it," she wrote on Facebook. "I still remember when the doctor walked in the room and told me she thought this was life ending, whatever 'this' was. I can replay it in my mind like it's happening right this moment."
Erin knows that she isn't the first mother to lose a child, but she also knows that there is so much that she's going through that nobody seems to share. "No one talks about the severe PTSD you can be plunged into when your child dies in your arms. . . . Or the way it felt when I heard and felt his last heart beat [sic]," she wrote. "Or the look of concern on the nurses face as she pushed the code blue button. I replay our life in flashbacks. Sometimes I get lost in them and I can't find my way out."
Erin explained how it feels like she's replaying her life in flashbacks, lost in the memories and unable to find her way out. "No one talks about the way your mind and heart both shatter the moment the doctor finishes listening to the silence of his heart and tells us he is gone," she wrote. "And your life plunges into a place you never imagined. No one talks about the unending sadness and torture of your heart that will forever be missing a piece."
As Erin continues to try to make sense of what she knows deep down will always be senseless, there's still so much that those around her don't understand:
No one talks about the meds and therapy that happen after your heart has been ripped out of your chest.No one talks about how you want to scream inside your head every time you see someone complain about something their kid did or didn't do because you wish you could still have that experience.
Or when you see the whole world keeps moving as you scroll through social media but yours sits frozen. Because every day is another day without him and another day of his death and puts your [sic] further away from the life you knew.
No one talks about how the first year you spend numb as if your [sic] in an awake coma stumbling through your life, trying to figure out your life and contemplating the permanency of death.
As the mother of a child who had disabilities, Erin also understands that her mourning is simply different. "No one talks about what families do after a special needs child dies. A child you spent every waking and non-waking moment with, trying to fill their life with joy and doing everything to keep them well and alive," she wrote. "They are and were your 24/7, but then one day your [sic] forced to drive home without them knowing they will never again be your everything."
When Kreed died, Erin's world shattered, and it now seems frozen in those moments. "The rest of the world moves on because he wasn't their world, he was ours," she wrote. "Everyone wants you to be fine and every day you tell them you are because let's face it, no one could possibly understand the depths of sadness and despair we were thrown into."
Erin continues her "charade of fineness" while also privately remaining in her depths of pain, knowing that it will never truly be fine:
We shared our living world of Kreed with the world and now we share the depths of our pain at his loss. A year later this is what it's like. And this is what people still don't talk about, perhaps because it's so incomprehensible. But it's the reality that exists for so many of us who have lost our children and more than that, the children who consumed our lives and became the center point for which we lived our lives around. I miss him with a fierceness most will never understand. And I lay shattered with a depth of sadness few will ever experience.
But that is exactly why Erin wants to talk about it. Just like during Kreed's life, his family shared what people didn't talk about while searching for cures, in hopes of helping others. "So hold your children tight and realize tomorrow is never promised like we think it is," she wrote. "Live this life. You will never know when the ride will end and you will be in this grief kind of life."