I had a friend once, I use the term friend rather loosely now but then she was what I would class as dear to me. We had walked though a lot together and I assumed we would continue to do so.
Then when in the midst of Livvy’s regression I was crying down the phone to her when she uttered the words that have scarred my heart for such a long term “I swear your life is like a trashy soap opera, everything happens to you, or maybe you just like the drama”.
I remember the impact of these words as if it was yesterday. How anyone could believe that this was the journey of life I had wanted to take was beyond me but to accuse me of being dramatic hurt. In fact it hurt so much that I shut down, I didn’t allow my feelings to show. I closed the door on that friendship and many others in fear of judgement.
Why am I telling you all this?
Because I am in a place now where I am ready to own my own story. Ready to embrace what I have lived, not with echoes of shame but with pride.
Having a child who was born with a debiliatiting condition was hard but not knowing what it was and not expecting it was literally a nightmare. I cannot find the words to explain how painful it was to lose my daughter to Rett Syndrome, twice. Watching her eyes leave my face, her words disappear from my ears and her movements lost to the stereotypical.
To see the fear in her eyes as she screamed and screamed, crying out for me to rescue her. It broke me in inside, I cried out to God so often to heal her.
But he didn’t.
Yet slowly and surely he healed me.
I finally began to embrace the journey I was set upon, although it was very different from anything I could have ever imagined it was full of wonder and joy.
Joy, does that surprise you?
My daughter had a severe devastating condition, my son has a very complex disability but both of them loved, loves life in a way that brought, that brings me so much light.
It’s took me a long time to get to a place where I don’t apologise for what some see “as drama” in my life.
I have surrounded myself with people who get it or who try to understand it.
I have walked away from those who don’t or who don’t want to.
I can accept that some people cannot understand the life I lived or now the life I have chosen and that’s ok.
We are never going to be a typical family and I am embracing that, celebrating that.
Yes at times I am lonely and I do get sad at having to apologise for another missed get together, group activity or friendship meal.
But my children will always be my first priority, always my heart.
I don’t know if my friend understood the impact of her words or how they would change me inside. Maybe it was meant as a throw away comment that wasn’t supposed to find roots and bury itself deep.
Maybe it was my state of mind back then that fed and watered these seeds of deceit.
I don’t know and I actually don’t care.
Because I’m not that person anymore.
I cannot say that harsh words don’t still sting or dig deep in my heart, but they don’t get to stay and or get to take root anymore.
I am stronger than I have ever been.
I have faced the darkness of death and my memories, love brought me the light.
I face the suffocation of fear but my sons smile breathes air into my lungs.
My children are my world, they are the air that I need to breathe.
I am stronger for being their Mama.
My faith is stronger than my fear.