BY AUBREY MCKENZIE JONES

When you find out that you are pregnant, you do not think about the grief of mothering a sick child. You are filled with hopes and wishes of a bright future for the new life you are bringing into the world. You lean on those hopes even as the doctors tell you your child may not make it through the night. You lean on hope although every day is uncertain. You lean so much on hope that you do not realize you are on autopilot just trying to survive.

Trying to survive the realizations that your child will not be healthy and your hopes for your child have turned into grief. Dedication to survival overtake your feelings of grief as you immerse yourself into learning this new world of complex care needs, hospitalizations, medications, specialists, surgery, watching for and trying to run from death. Not only becoming a parent but a nurse, a medical assistant, a social worker, an advocate.

You realize that parenting a child with complex care needs alters your entire purpose, your being, your essence, parenting this vulnerable child has now become my purpose. A purpose beyond the expected ebbs and flows of parenthood. A purpose of surviving life and unwavering resilience.

You learn to cope each day learning more about this new world you did not know existed. This new world full of uncertainty full of worry full of “what do I do’s.” Yet also full of the magic of faith and miracles you would have never known. Each day you learn more about this amazing person you have come to know not only as your child but your greatest teacher, your comrade, your identity your purpose.

As the years go by you learn the complexities of care for another human who is the epitome of vulnerability yet the essence of strength and miracles. You see the world through the perspective of vulnerabilities and the fight for health and wellness. You seethe world through true quality of life.

Through the years, putting the needs of the one most vulnerable first has organically become the norm. The norms of night-watch, o-2 sat monitors, sleepless nights of epileptic episodes, OCD sanitation, chronic hospitalizations, and fits of beautiful chatter and giggles which I still believe were you and your guardian angel having the best conversations. I remember a time when I wondered if you would laugh… when I heard that first little chuckle it was the sweetest giggle I never want to forget. I became used to the norm of our dynamic unit and the acceptance of it just being us two.

Yet, as the years went by so did your life. The grief of realizing that your physical growth was not a good thing in fact it was damaging to your already vulnerable body. Your lungs your heart your bones. Your precious body could not handle your growth. Yet you smiled and gave me joy all while living in pain. A pain that on so many occasions I wished I prayed my heart cried wanting to take away. The pain of realizing that you were also holding on for me. You held on for me until you knew I would be better, that I would make it that I would keep surviving and eventually live. You held on until we were both so tired.

When you became tired and your body continued to shut down… my heart still yet held hope… Hope that I would have my son, my comrade, my greatest teacher just a while longer.

Over these years since you have been gone, I have had to realize that 15 years waslong enough. Long enough to hear the giggle I once worried would never come. Long enough to learn what unconditional love is. Long enough to comprehend a world I would have never known. Fifteen years too long for you to live in pain. Long enough to remind me of the being I came to this world to be. You were my purpose but more importantly you reminded me of my purpose. That I do have purpose through all the pain.As much as my Soul hurt, broke, watching you leave, you were the foundation of my heart, and now I know you are the wind blowing a comforting breeze, the birds flying playfully through trees, the rainbows through every storm. You are the fireflies that illuminate the night and the blazing stars in the sky. You are the reminder of me, the one who taught me to live life purposefully and with meaning.

You were and always will be my De’.