Often times, late at night, I cant sleep. I feel an extreme urge to write down whats on my mind.
I guess this urge came from years ago when my therapists gave me a list of ways to cope with my depression and anxiety. It has saved me more than once. Sometimes just jotting down what keeps playing in my mind can help me feel a sense of relief. Like its not just trapped in my head. Its out on paper, and its real, and I can share it with others if I choose.
The past few days have been hard, I cant pretend they haven't. When its quiet, and I am just staring at my sweet boy playing so innocently in the floor with his toys. His hair swept over to the side and his comfy jammies. And his smile, oh his smile just reaches me in a wave of emotion. This time three years ago Waylon was hooked to a multitude of machines to keep him alive. His body was unstable, he needed a ventilator to breath, an umbilical line to pump him full of meds to keep the hole in his heart open. The only thing truly keeping his heart as stable as it was, was that medication. He was heavily sedated because he just couldn't tolerate sound, light, touch. His numbers would drop dangerously low, which was another reason for the ventilator because he continued to stop breathing.
Even though this was three years ago, the memory and emotions are still so raw. Looking at him happy makes me happy, and emotional at the same time, because I know what he came from. The struggle and pain he endured to get to this place.
I have went back to this journal entry often this past few days and felt it was time to share because I feel like others could understand, I get comfort from that. Knowing that I am not alone in this journey with my child is both sad and relieving at the same time.
Here is my entry from months ago, when I slept no more than 3 hours in a night for 2 weeks.
I hate the entity called CHD.
The dark demon that holds our child's tiny lives in it's hands.
Engulfing our entire family into it like a raging fire.
Beating down doors, staring you in the face, no where to go. Its not an addict on the street
you can walk away from and deny.
It covers you in its "comfort" blanket every day that you have with your warrior, leaving you wondering "when?" its going to strip them away from you.
Having you on edge leaving you with vivid nightmares of what could come, and what others have faced.
It takes you down quicker than any storm could and destroys any picture you had of your child when you first seen that positive on that pregnancy test.
Its a ROTTEN thing!
A COWARD, hiding behind deceiving smiles , slow development and failure to thrive diagnosis.
The only visible hell left behind is faint scars, blue lips and tiny blue fingers/toes.
Scars that are uplifted, used as empowerment. Showing their endearment, their strength, not their pain.
While that entity just tick, tick, ticks away.
That bomb waiting to blow.
Each second precious, but the future feared.
Will he live???
Will he beat this????
We will fight, sutures, scalpel, and doctorates in hand.
Besides, what else can we do, when the entity has our child in hand and our family held hostage?
One things for certain, its all been worth it.
Though the seasons change, that will remain the same.
Its okay to have fear.
Its when you become so overly consumed and no longer productive, that you need to re- evaluate.
Down times happen. Scary thoughts creep up.
There is NO manual for this life.
I may be scared, but its not defining me. I'm taking it one day, and sometimes minute, at a time.
As long as he is fighting, I am too!!
All of this so true. I will say it again, this life isn't easy, but it is worth it. He is worth it!