It was just 2 weeks after Brendan Bjorn’s first birthday when I drove him from Tucson to Phoenix for a second opinion from a Paediatric Neurologist. You see, I still had hopes at that stage. I was still holding on to those dreams of the future…his future and mine.
In his first year, Brendan Bjorn had been diagnosed with congenital CMV (cytomegalovirus) at 4 weeks old. The week prior to that diagnosis it was confirmed that he was profoundly deaf in his right ear. I remember thinking that was such devastating news; unilateral deafness!
What’s that they say about hindsight?
Anyway, after the cCMV diagnosis came a CT scan at 6 weeks old which showed moderate brain calcifications, decreased white matter, slightly widened ventricles, a portion of his brain’s left hemisphere not fully developed, and of course, microcephaly – a word I learned when he was just 2 weeks old.
At 4 months old, on Valentine’s day, his neurologist diagnosed him with quadriplegia cerebral palsy.
At 6 months old, in April 2005, he had his first EEG. I can’t even tell you how many he’s had since, it’s that many. He had been experiencing severe infantile spasms, or myoclonic jerks, so the EEG was ordered. It was the only EEG he ever had which read as normal.
It was just 2 weeks after Brendan Bjorn’s first birthday when I drove him from Tucson to Phoenix for a second opinion from a Paediatric Neurologist. You see, I still had hopes at that stage. I was still holding on to those dreams of the future…his future…despite what all of the tests that first year told me.
Journal entry from October 15, 2005.
“I don’t know where to start. Yesterday I took you to see a neurologist at Phoenix Children’s Hospital. It was terrible. He was terrible. You were so beautiful, as always, smiling at me, at the doctor. He asked if I was always so happy. I thought he was asking you, so I answered, “Yes, he’s a very happy boy!” He said no, he meant me. Max [my step mother] said I do deal with depression over the diagnosis of CMV. The doctor then said he wondered why I was so happy because CMV is nothing to be happy about. He was abrupt and didn’t even examine you. He didn’t even attempt to interact with you. He just told me that CMV with microcephaly is a bad prognosis…that I can expect you to surely develop seizures, that you will only have an IQ of 40 to 60…that you will most likely never walk or feed yourself, therefore your lifespan will be shorter. I was devastated. A piece of me has died. I feel like I got your diagnosis all over again. If he is right, you will never read this, you will never understand any of this, you will never have a life of your own to discover. I feel so sick; beyond sick. You are my heart, my life, and I feel as if my heart has stopped, my life forever damaged, changed, painful.”
Yesterday, July 2, 2019, I sat at my desk while looking for some papers, and picked up the old journal containing the above entry. It’s priceless to me. I began it the day I found out I was pregnant with Brendan Bjorn. It’s a roadmap to the early years of our journey together. I’m not sure why I share this here now. Possibly because that pain has never left me. In some ways, it’s grown. And lately, it’s been weighing very heavy on me yet again. I try to hide the pain of this journey, and the inevitable outcome, but sometimes I just can’t.
This journey, and the years of fighting and struggle, do take its toll. So remember, even those who seem strong outwardly may actually be crumbling inside.