By Marisa Baese
Mommy to Anabel
August 15 – October 2, 2018
Trisomy & Congenital Heart Defect
Hope: a feeling of expectation and desire for a certain thing to happen.
The definition of hope is pretty direct and specific, unlike our plans with Anabel. Yet, we found, kept, and clung to hope from May 11 until the day she was born. After she was born, our hope became less tangible and more open-ended, like a general wish versus immediate need.
Early on in her life, our hope was taken away during a meeting with surgeons, who decided that heart surgery would not be successful for Anabel. The entire orchestration of getting to that point seemed immediately… worthless feels painful to say… but what’s a word for “what’s the point”? Why did doctors, specialists, nurses, friends, and family spend all this time working so hard to get Anabel here — alive — only to shut the door on her future?
The soft glow of hope that lived inside us was snatched and before we could grab it back, the door was locked. No other doors were immediately opened, we were without words and without breath. We were… hopeless.
This was the day On Angels’ Wings was presented to us, an immediate act of care and love through family photographs. A gift neither of us had thought of but so desperately now hold dear. Our forever family of four.
That night was rough, as one might expect, but I could not accept the door of my daughter’s future being shut for us. I vividly remember telling our main nurse that if any surgery or medical intervention options are not pursued, it’s because we reached out and closed that door ourselves. But having a door shut on you, with no key to unlock it… that’s hard.
This lead to us seeking a second opinion, re-sparking that inner, and outer, glow of hope. Searching in the fog and dark for any resemblance of a door or path or arrow to follow. We clung to that new stepping stone like a lifeline in the water, fingers white and eyes wide as we dare not let go. After a brief rest to catch our breath we bobbed along until we determined our next course of action and put our blinders on. We would find a way to keep the new-found and so very precious hope we had.
The hope inside Anabel never left, we saw it in her eyes. She knew that the love we had for her was all we ever needed. She was the glow, she is the hope.
