“Journey is not and never will be a diagnosis, she is Journey, and she has her own story to be written by the hand of God.”
Theodore Roosevelt wrote, “Never throughout history has a man who lived a life of ease left a name worth remembering.” Journey Love’s name was chosen long before we knew her diagnosis. If you ask me, it was divinely chosen. Her middle named selected to follow her sister’s middle name, first Faith, then Love. It has been this since the day she stepped into this world to open our eyes to a life so much richer in existence than the one we had been previously living.
Because of our personal belief, we had chosen not to have any formal testing of any nature done. We had one minor encounter that had hinted that there may be something very different in Journey’s development but it was quickly dismissed and long forgotten.
Journey entered the world through natural childbirth in a room with in a room with myself, her father, my doula and midwife. And then the floodgates opened. Swarms of bodies filled the room with what perceivably looked in retrospect as panic. God has known at every step what I needed and at that time it was pain. I was in a cloud and fog of unadulterated pain because of whatever nerve that had been hit during her natural birth and with the panic, the only person who seemed to notice me was my doula. I was almost completely oblivious to the chaos at hand. It wasn’t until my pain subsided and my husband entered the room teary- eyed to tell me he was accompanying Journey to a NICU in another city more capable to attend to her vast needs that I felt my first pang of uncertainty and a restlessness in my spirit.
But as any mother separated unwillingly from their child I had sheer determination to get to her, and because of the natural birth, I was able to get to her the very same night. And that’s when the questions started coming…
I remember being poised in a manner as if a loss had just occurred. The words….”we believe we know what we are dealing with… and, if it is what we think…” I was asked if I used the search engine Google much, and I responded with a steadfast no. Apparently this was a good answer because that is how the geneticist responded, “ Good.”
After that I remember a series of days being sat down and told, “7.” If we were lucky, Journey would have 7 days. I couldn’t help think immediately the Biblical value of the number 7 and a strange calmness rested in my soul. It must have projected as a look of confusion or the lack of an ability to digest what was said, but it was repeated over and over, for a few days in fact, until I believe they thought they would see a sign of acceptance. The problem with that is that I never have fully “accepted” Journey’s diagnosis. This does not mean I dismiss or do not acknowledge what comes with a child of such special need. But, to me Journey is not and never will be a diagnosis, she is Journey, and she has her own story to be written by the hand of God.
I acknowledged and thanked all of the medical and scientific side to things but let them know we were people of faith and that we would allow that to be our guide. Then we got to work.
My husband and I worked as a team around the clock trading off shifts so that one of us was always present in the NICU with Journey and the other could spend time with our other child and work. We worked tirelessly for 27 days and nights with Journey to hit one goal after the next. She lived to be skin to skin with us and we both did it every day, encouraging each step that we were told “she most likely wouldn’t do.”
First concern was her brain; a swaddled MRI let us know she was okay. Then it was her heart. She had a few VSDs and ASDs and her PDA had not closed. One by one starting with the closing of her PDA, resolution after resolution, fast forward a year and a half and all of her heart, fully resolved. They checked her kidneys; a bit of sludge, but resolved prior to her exit of the NICU. A little baby, given 7 days, that we were told would require oxygen, need a gtube, need a trach, and go home on hospice, walked out of the NICU without any oxygen support, no gtube, no trach, feeding by bottle from my expressed breastmilk with minimalistic supports of blow by air and suction.
Journey is now two. We have had a few hospital visits; the longest inpatient was around the 7-8 month mark where it was necessary for her to get a gtube as a bridge to assist with her GI issues, have a LADDS procedure for malrotation and an appendectomy. Other than that we have had a few ER visits, the majority not overnight stays but for those that were we typically went home fairly quickly thereafter.
We have had to advocate frequently, study enormously independently, do a lot of the medical “ work” by networking with other amazing families, prayer, research, and trial and error, but she turned two Dec.15, 2020. She has already hit many milestones and defied so many odds.
Journey is currently back to eating orally and still has a great mysteriousness to many of her gastrointestinal functions. But who among us has lived a life without adversity? Who among us has not learned from that adversity and become better versions of ourselves for it?
A nurse named Grace requested us on the date of our release from the NICU. Ironically, Grace was not a fervent believer herself but she said that she felt compelled to be there to see us off and that she had learned so very much from our family experience. On that very day, our little “ LOVE” was able to touch Grace and has been doing the same for so many others since.
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