I wish I could say that this post title is the work of some sneaky, clickbait like thinking. But it’s not. It’s the phrase that’s come to mind over, and over, and over again the past few weeks.
I wasn’t supposed to write this post.
My blog wasn’t supposed to be all about this topic.
This isn’t what my life was supposed to look like…
But here I am. Writing the post I was never supposed to write… again. For the second time.
On October 9, 2019, I gave birth to Rory, our family’s third child. Big sister Olivia is already in heaven, and our smart and sassy girl Gemma is at home with grandparents.
Where’s Rory you ask? Rory is not home. Rory is in the NICU. He was born incredibly sick. Just like his sister Olivia. His life, is going to be very short. Just like big sister Olivia. The same story that unfolded three years ago. The story that was supposed to be a one time deal. Well for us, it’s not.
It’s happening again. All of it.
The same utter, blindsiding shock during delivery. The same gut wrenching realization. The same words said to me in a blur by the hospital staff. Genetic condition. Weak. Underdeveloped. Respiratory distress. Intubation. Ambulance transport. Quick. NICU.
The short story is that Rory appears to have the same rare form of an already very rare disease called non-5q Spinal Muscular Atrophy, just like Olivia. It’s rare, there is no treatment, it is a fatal diagnosis. Our tiny little boy with big bright eyes is going to go to heaven. It’s just a matter of when. Weeks, maybe months. Possibly days.
And with that, my life is being completely upheaved, again. My worldview changed, again. My perspective on life and death, love and loss, and everything in between, put to the test, again. Questioned, again. Doubted, again. Ultimately strengthened… again.
After Olivia died, I knew that her story would shape me as a person, forever. It would shape would I became as a women, a wife, a mother. It shaped me in the most twisted, tragic, and yet beautiful way imaginable. Her story seeped into every nook and cranny of my being. I carry her lessons with me, always.
But at the same time, I thought I was in control now. I thought I could take her life, her story, and how it shaped me, and be in charge of how I planned to move forward. My story moving forward was mine to tell. Olivia’s story was a forever part of me but in time I could move forward and become who I always wanted to be.
A loving wife. A patient mother. A hard working homemaker. A change agent in the community. Those were all the things I was working for… child loss and forever grief was a string to be woven throughout but it was almost becoming a chapter that sat for the most part behind me.
Now, it’s all of me. Not one, but two of my children will have died. Not once, but twice I will have watched my infant take his or her last breath. Not once, but twice I’ll stand in front of a crowded church and read a eulogy about a baby that never made its way home.
Most people, fortunately, never experience child loss. Ever. It’s considered every parent’s worst nightmare, and luckily for the masses of moms and dads, it’s usually just that. A nightmare.
But for me it’s real. It’s happening. Twice.
How do I overcome that?
How do I move forward from that?
How do I become anything but crippled by death and loss and deep, deep grief?
I was supposed to be the mother who walked through fire and came out the other side stronger. The mother who took a terrible situation and found the light. The mother who made lemonade from f%*king terrible, rotten, unimaginable, sour, lemons. The mother who rose from the ashes and spread hope to others behind her. The mother who reached out a hand to help those drowning in their own grief.
I was supposed to be strong. And now I am here.
Writing the post I wasn’t supposed to write.
Where do I go from here?
How do I continue?
How can this do anything but define me whole being?
What will I be like on the other side of this?
Right now, I don’t know… but hopefully soon I’ll see.