Why The Peaches
The first time I formally advocated for Annie was five weeks post discharge from her unexpectedly problematic heart repair recovery. I stood up in a board room full of physicians and higher ups and read Annie’s story aloud. I remember barely being able to choke out the fresh trauma while Spencer held her next to me.
It was HARD, but I wanted them to see the little girl we were talking about who had just beat death and fought for her life for months.
It was clear that if the medical staff in those appointments had not been reading her chart, there was no chance anyone present knew the depths of her story either so I took the honor to share it.
The negative experience I was speaking up about happened at a clinic that exists to support any child who has spent time in the NICU. This qualified Annie who had her short 9 day stay after her birth. Going into that appointment I had no idea what this clinic was about or what to expect because my life at the time was a total blur of helping Annie continue to heal. The number of appointments were endless. When we walked in she was on 12 different medications, many that were given multiple times a day. I had no nursing support from insurance and especially no help from the state of Texas. Feeding her at that time was also very complex. She was on a very rare formula because she had developed chylothorax after surgery. We would feed as much as she could take through her bottle and then give the remainder through her NG tube (feeding tube in the nose) with a feeding pump.
Leaving our house felt like prepping for a 5 day trip.
In that appointment I was never offered support with her complex feeding regimen and when I asked for a bottle warmer I was told they could not help with that. The cause of stress was that this complex formula was not only a science experiment to properly mix, but I also had to thicken Annie’s milk to prevent aspirating. If the milk was not warmed it would not thicken, if it did not thicken and she aspirated into her lungs we were putting her freshly mended heart at major risk.
This was a clinic where all patients were either premature or had some medical complexity that landed them in the NICU- why did they not know more about feeding?
Person after person would come in asking similar questions about Annie. It was exhausting, overly repetitive, unhelpful and lasted almost 3 hours. A developmental assessment was done on Annie. I remember the PA telling me all the things Annie was behind on, needed improvement on and hearing the word “delayed” over and over as she went down the never ending list.
I was looking at Annie so she didn’t see me crying and outloud said to her, “Not bad for a baby who just survived ECMO”. The woman loudly said, “what! she was on ECMO?!” then began scrambling through her stack of papers.
I said “YES… we are just grateful she is alive by the way.”
Here my child had just overcome the odds like her cardiology team could not believe, but nothing about her start to life was taken into consideration nor was the fact that she had Down Syndrome & was on a timeline of her own.
I shared our experience in that meeting. I told them they needed to stop comparing children in these ways. This was not apples to apples. I told them Annie was not an apple, she is a peach. She should not be examined and compared with the expectation that she will magically turn into an apple. She will always be a peach. Peaches have different genetic makeup than apples. Peaches are not worse than apples, they are just different. Acknowledge the differences in the two, help each be the best version of themselves, and stop forcing and expecting the peaches to grow like apples.
Later that day I remember texting some of my best friends letting them know how it went and told them the about the peach analogy and one said “that needs to be on a shirt!”.