An open letter for those who have left
The outside world understands no insight on what happens behind any closed door. Am I right? You're battling your past (in some fashion), trying to stay present in the moment (fight or flight), meanwhile you're worrying about what the next moment might bring. I call that the power of being a human. Human behavior, instinct, the universe, a higher calling, your environment, the company you keep, your choices... are all things that directly or indirectly create the path for which you are on.
My sweet Abel will be three years old in a few months. You can try and read stories, theories, studies or live persons with his dual diagnosis. Kindly correct me if I'm wrong that the majority will lead you on Doctor Google to all of the genetic counselor suggested or chosen abortions, unfortunate miscarriages, or untimely deaths that have ended a life with a similar genetic mutation and anatomical malformation that makes up our Abel.
An open THANK YOU letter for those who have walked away from him;
Thank you for leaving.
A sincere "I wish you well" to those of you who have led my son to this very moment. He's sleeping comfortably in his crib, and I'm blessed by God solely enough to be soothed by his respirations of his ventilator (because they've become my white noise). He's beautiful, safe, and arguably wrapped in more love than your own holy grail could fathom.
Thank you for having the courage to walk away from the battle. By knowing that there are more battles to fight or marathons to run, we're so grateful you chose an honorable discharge, or to sit out for the rest of the marathon at refreshment station XYZ. Because of those who have provided professional care like you, we've been peacefully able to remain dedicated without carrying the weight of a heart that wasn't fully committed. As history repeats, the strong will survive. Delicately and methodically, our family is made up of a military mind set (I thank my dedicated husbands on-going military service for that). That mind set has carried us through the darkest of days with Abel. You might see a toddler holding onto a walker for assistance and grasping for your hand to help pull him up. You might see medications, nutritional administration, respiratory and clinical perimeters to guide you during your Abel moments. Perhaps you're tired of the mundane "my patient is on a ventilator and sick again plan". That mindset is what separates you and the rest of the world as the lucky ones who are Team Abel. You won't see in your Doctors Orders Abel's full medical history, his 31 days he spent on ECMO, the 323 days he clung to life in the MSICU at Boston Children's Hospital are battle scars that you couldn't reckon with if you tried to tap into your deepest imagination. Your hard days, your tough days, and the days you reminisce on the degree that defines the initials by your full name and what's next, write them all down and pass them on to the patient you want to invest your soul into. "One cannot help everyone, but everyone can help someone".
My life has not been a story worth sharing to the general population that consumes, feeds off of, or thrives on others misfortunes. The day I birthed my precious angel Abel, my story changed. I was given a gift that I knew would change even one person's life, but only if I was brave enough to share our journey. Abel's medical fragility is something that has made me a better person from the inside. I've dug to the depths of who I am to find purpose of how to be the best version of myself, and to be open to learn and accept personal growth whether it's painful or pleasant. I share Abel's story from my eyes because he has given me new lenses for life itself. To those who have actively sat in the corner and cheered me on, I feel your encouragement.
The exterior is rough being the parent of a ship like ours. We intermittently act as a steamboat, a sailboat, a paddleboat, and sometimes we're just a sinking ship needing rescue amidst the rough waters. Interestingly enough we're never the anchor. But our son is.
Relate to us or feel uplifted by our perspective? We thank you. I hope to encourage other families to fight the battle that you were chosen for with dignity and grace.
-Dee (Founder and Proud Owner of My Hero Calls me Mama)
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