In April of 2019 my son was taken via ambulance to the closest pediatric hospital because he was having difficulty breathing. He was 6 months old at that time.
It felt like things were spiraling out of control that day. I remember that I had taken him to the walk-in clinic because he seemed to be breathing quite quickly. The doctor barely took the time to introduce herself before sending us straight to the closest emergency room. We arrived at the ER and after Oscar was examined, the ER doctor facilitated our transport to the closest pediatric hospital. We were sent directly there via ambulance accompanied by a nurse and a respiratory therapist.
When we arrived, we were escorted to the pediatric wing and directly into a room. Instantly the pediatrician and two nurses were there to start his assessment and get him set up on the appropriate monitoring devices. They quickly decided to put us in a different room. They moved us down the hall to a large room with huge windows right in front of the nurses station. I started to freak out. How did things escalate from a walk-in clinic visit to now being admitted to the hospital and placed in a room where Oscar could be optimally monitored? Oscar was also put on a high flow machine (non-invasive ventilator). It is different from just being on oxygen because it pushes air into your lungs, so that breathing becomes easier. Things had spiraled.
I am sure many of you have had those days where you wake up and the day turns out to be totally different from what you had planned. This was one of those days for me.
I was really scared. By this time we had known about Oscar’s brain abnormality (polymicrogyria) for 4 months and his genetic deletion (1P36 Deletion Syndrome) for 2months. I was still grieving those things when this happened. As I was sitting in the hospital I was looking through the 1P36 Deletion Syndrome Support Group Facebook page and I happened to come across the most beautifully written story. This story was titled “Grieving the Future I Imagined for my Daughter” written by a fellow mother of a child with 1P36 Deletion Syndrome. It was published in “The Atlantic” (an American magazine).
“Without crumbly, unreliable hope, what else is there? There’s my child, no less alive or human than any other, and with abilities and inabilities much different than I imagined. And realism, which I’ll use to reassemble a positive, long-term picture of what her life could be. Izzy’s diagnosis wiped my canvas clean. But while the expanse of whiteness is unsettling, it is also temporary. Soon there will be lines, contours, shading—a new and beautiful composition. I will not accept less.” Written by Julie Kim
I remember reading this in the hospital room with my son unable to successfully breathe on his own and just crying and crying. This was exactly how I felt. But at that time the page was white. And the whiteness was very “unsettling”. Now, a year and a half later the page has started to fill in with “lines, contours and shading”. I will always remember how it felt when that page was white.
I will never forget where I was and how I felt when I read Julie Kim’s story. She had put into words what I was feeling even though I didn’t yet understand my own feelings. I was so grateful for her words, especially on that day.
I wanted to share the link to Julie Kim’s full story because it really is a beautiful read about grief (if there could be such a thing).
“Grieving the Future I Imagined for My Daughter” by Julie Kim
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