A Jump Into More Truth & Advocacy
I can still taste the Kahlua in my coffee. I can still feel the touch of his tiny hand on my own. I can still feel the rush of adrenaline, the intense heat, the fear and then the silence, calm and peace as my body took on the fight to survive.
It’s been five years, one month and four days.
I’m asked often, “how did you cope?”
“How were you able to get out of bed?”
As honestly as I wrote in my book, what I didn’t follow up with is that years later it is still difficult.Those moments are so much a part of me and my cellular memory that it only takes a brief sensory reminder to bring those emotions to the forefront.
That is the truth of surviving affliction. You conquer, you put one foot in front of the other, but the wounds, memories and even the grief is forever a part of you. It’s the beauty of survival. For we have seen the darkest, outlived it, and can now see the glimmering stars within it.
I move the little white egg a few times a week— just over a nudge to make room for my coffee (without Kahlua these days). I touch it as if it’s decorative, but as I do so there is a slight tingle in my hand. I know what’s inside, I remember the day. I know the sacredness of the egg, it’s contents, the memories and the loss.
I sit down, coffee near, thinking of the Kahlua that was my crutch, thinking of my own survival, the boy that I couldn’t keep— and then I look over and see my Zev, my sweet sweet boy that did survive.
This is what life after affliction represents— a mostly present and successful existence in the now with a fingertip extended to the past.
Two feet in the present with a fingertip reaching back to another life is okay. Those of us that have survived the worst days of someone’s imagination are the ones that have truly lived, loved, risked, embraced, celebrated.
As I remind myself that I was only in my twenties when life tossed me so many curve balls of affliction— of loss, I can’t help but feel fortunate. I was shaped, painfully molded into a better more, well rounded person with a deeper sense of life, love, conflict, resolution and empathy.
In turning thirty-five this week, I find myself reminiscing of my thirtieth birthday, the party, and the breakout it was for a new life post the traumatic loss the month before. I wonder who was that girl. I wonder how she did survive, both physically and mentally. She seems so young to me now— so vulnerable, and even with affliction, still so naive.
I imagine in another five years I will look back to who I am today with the same perplexity. For I know I will grow, take on more in life and my threshold for normal, achievable and survivable will have changed many times over.
There will still be our little white egg, a fingertip reaching back to the past, deep memories of affliction and new challenges. What I hope continues to exist is our optimism— which at times has seemed inexplicable and even certifiable.
I hope there is truth and honesty within myself over the years to come as well. As much as we survive, our successes in life are not achieved with ease, so we must stop pretending they are.
Being a special needs parent isn’t effortless, and as it may indeed be a gift, it’s a mixed bag of blessings and undeniable losses.
As I move into another age category, I think it might be time to blog as honestly as I wrote in my book. It might be time to shake up old viewpoints, rock the boat for advocacy and bring special needs children and their parents out of the dark hallways. It might be time to readdress old stigmas, old players and reinvent the game a little—- or better yet, stop playing games.
Embracing and surviving afflictions is the work, and the responsibility afterwards is ours to not just keep surviving the day but to advocate, express and awaken. Our afflictions lie within us just beneath the surface as a reminder, but possibly as a push to create the change that is needed so that we can all walk out from the shadows of affliction.
Here's to another year of literal survival, to growth and to more honesty and advocacy.
It’s been five years, one month and four days.
I’m asked often, “how did you cope?”
“How were you able to get out of bed?”
As honestly as I wrote in my book, what I didn’t follow up with is that years later it is still difficult.Those moments are so much a part of me and my cellular memory that it only takes a brief sensory reminder to bring those emotions to the forefront.
That is the truth of surviving affliction. You conquer, you put one foot in front of the other, but the wounds, memories and even the grief is forever a part of you. It’s the beauty of survival. For we have seen the darkest, outlived it, and can now see the glimmering stars within it.
I move the little white egg a few times a week— just over a nudge to make room for my coffee (without Kahlua these days). I touch it as if it’s decorative, but as I do so there is a slight tingle in my hand. I know what’s inside, I remember the day. I know the sacredness of the egg, it’s contents, the memories and the loss.
I sit down, coffee near, thinking of the Kahlua that was my crutch, thinking of my own survival, the boy that I couldn’t keep— and then I look over and see my Zev, my sweet sweet boy that did survive.
This is what life after affliction represents— a mostly present and successful existence in the now with a fingertip extended to the past.
Two feet in the present with a fingertip reaching back to another life is okay. Those of us that have survived the worst days of someone’s imagination are the ones that have truly lived, loved, risked, embraced, celebrated.
As I remind myself that I was only in my twenties when life tossed me so many curve balls of affliction— of loss, I can’t help but feel fortunate. I was shaped, painfully molded into a better more, well rounded person with a deeper sense of life, love, conflict, resolution and empathy.
In turning thirty-five this week, I find myself reminiscing of my thirtieth birthday, the party, and the breakout it was for a new life post the traumatic loss the month before. I wonder who was that girl. I wonder how she did survive, both physically and mentally. She seems so young to me now— so vulnerable, and even with affliction, still so naive.
I imagine in another five years I will look back to who I am today with the same perplexity. For I know I will grow, take on more in life and my threshold for normal, achievable and survivable will have changed many times over.
There will still be our little white egg, a fingertip reaching back to the past, deep memories of affliction and new challenges. What I hope continues to exist is our optimism— which at times has seemed inexplicable and even certifiable.
I hope there is truth and honesty within myself over the years to come as well. As much as we survive, our successes in life are not achieved with ease, so we must stop pretending they are.
Being a special needs parent isn’t effortless, and as it may indeed be a gift, it’s a mixed bag of blessings and undeniable losses.
As I move into another age category, I think it might be time to blog as honestly as I wrote in my book. It might be time to shake up old viewpoints, rock the boat for advocacy and bring special needs children and their parents out of the dark hallways. It might be time to readdress old stigmas, old players and reinvent the game a little—- or better yet, stop playing games.
Embracing and surviving afflictions is the work, and the responsibility afterwards is ours to not just keep surviving the day but to advocate, express and awaken. Our afflictions lie within us just beneath the surface as a reminder, but possibly as a push to create the change that is needed so that we can all walk out from the shadows of affliction.
Here's to another year of literal survival, to growth and to more honesty and advocacy.
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