November 17, 2021
Author: Heather Lowey
As a daydreamer, it’s natural to want our daydreams to become our plan. A life not only dreamt up, but also likely built up into our heads as THE plan. But what happens when THE plan comes crashing down? Where does the daydreamer go?
Buckle up friends for Jess’s incredible story of resilience, mindset shifting, and reconnection to youthful daydreams.
ABOUT JESS
Jess grew up as the oldest of a family of four kids. Sitting in the backseat on the way out to family dinner, she consistently daydreamed of parting the crowds at a restaurant as she’s escorted to the table by the maître d’. People looking at her and her family in awe of their grace and presence. Imagining every detail in her mind as the family embarked upon their evening at… the local Chi-Chi’s. HA!
“I still miss Chi-Chi’s to this day.”
Jess had us laughing one minute and in tears in the next. But the depiction of her as a daydreamer resonated on so many levels. Somehow from youth into teenage years, it’s often natural for this daydreaming nature to get lost or dim. However, for Jess, one daydream remained constant. Being a mother.
“I always dreamed of being a mother. In fact, I imagined out ALL of the details for my fictitious kids and the things we would do.”
In 2002, this dream became a reality. Maxwell Jonathan Hooker was born. Two years later, Addison Marie Hooker came into this world with a bang.
As the oldest of four, Jess felt as if she had worked the kinks out on this motherhood thing by parenting her younger siblings. She embraced motherhood with excitement and determination.
NOT ACCORDING TO PLAN
Max grew up and found a particular interest in reading. Becoming an independent thinker and a naturally amazing big brother.
Addi was independent, social, and didn’t seem to care much for school.
“In pre-school, then kindergarten, and eventually first grade, each teacher said the same thing. Addi is a great kid. She’s social and gets along with the other kids. However, there is something on the school side missing. She seems to master a skill one day, but it’s gone the next.”
Jess and Addi’s dad, John, as well as the teachers were noticing her zone out at various times. Initially chalking this up to age and childish behavior.
However, one summer morning between Addi’s first and second grade year at family breakfast, she began a zone out moment that quickly turned into a scary and confusing scene. Her arm went out to the side and as her entire body clinched, she began shaking uncontrollably. Jess, John, and Max grabbed her to ensure she didn’t fall, and after the episode passed, they knew things were about to change.
For 6 months, the family endured doctor appointments, neurologists, EEGs, MRIs, and an insane number of tests to figure out what was happening with Addi. The diagnosis came back as Bilateral Band Brain Matter or Gray Matter Heterotopia.
Essentially a dense mass of grey matter in her brain not developed which becomes a perfect environment for seizure activity.
Jess and her family were heartbroken. This was not the dream, nor the plan.
A NEW REALITY
After the diagnosis began the long journey of treatment.
To give you a small peak into Jess’s reality, 3 seizure activities are considered epilepsy. There are 14 medicines available to treat epilepsy and EVERY ONE OF THEM failed Addi. She has had thousands of seizures. In fact, it is abnormal for Addi to go through a day, let alone a week without some sort of seizure activity.
Jess admitted it was at this point where she lost faith in Western medicine.
“You are supposed to be able to take someone to the doctor and they fix it. This was not part of my daydream for my child.”
She acknowledged the dichotomy of appreciation for doctors, the medical profession, and their work while also feeling frustrated by the fact there is not a cure.
Additionally, Addi’s diagnosis typically leads to schizophrenia as she ages. This coupled with Addi’s mentality stuck at a 4-5 year old level was crushing to Jess’s daydream.
“I have people say to me all the time – I don’t know how you do it! – I often think to myself when hearing this statement – I didn’t know I had a choice!”
JESS’S IDENTITY
For several years, Jess’s two main identities were a special needs mom and a fun drunk.
“I didn’t want to face the hurt and the pain of my daydream falling apart. My daughter with special needs, a failed marriage, it was all too much. I drank all of the time. I was the fun drunk who brought all of the fun drinks!”
One day a few years ago though, she looked in the mirror and thought, “I look like s**t, I’m not going to drink today.”
That was over 900 days ago, and she has been sober since.
However, being sober she now had to face all the things she was using alcohol to dull. Sit in the thoughts she didn’t want to deal with.
With the support of a therapist and great friends, she has been able to do that. Through this, she came into the realization that her daydreams had become her expectations.
“Nothing can F you up quite like expectations!” she said through laughter.
THE SHIFT
Jess began giving herself a new message.
“Why don’t you start being curious about Addi’s daydreams?!”
While Addi is 16 years old, she has a 4–5-year-old capacity. Each seizure she has is like blunt force trauma to her brain.
Jess’s shift is now meeting Addi where she is.
“I get to be a part of my daughter’s daydreams forever. I have a gift of being with my daughter and the ability to leave this adult space and daydream. We can explore them together.”
This shift in expectation has not only affected how she approaches her time with Addi, but also in daily life.
“I have flipped the script. Instead of concentrating on what is not good, I think the opposite. Like this talk… Instead of it being a horrible idea for me to talk to a live audience, things will go amazing! I’m going to share stories and be the next Brene Brown!”
SUMMARY
Jess’s resilience and ability to look at life through a lens of humor and opportunity is incredible.
On perspective, Jess shared:
“Having a special needs child gives you perspective and clarity that nothing else could. It’s very odd to be holding your daughter and praying to God while cursing him in the same breath.”
Her advice for going through any traumatic experience in life…
“Learn how to accept help. Often people want to help but they don’t know how. Tell them.”
On the other hand, when you want to support someone else, she gives the advice of just showing up for people in a way that feels comfortable to you. Whether that’s a casserole delivered to their door or a text message sharing support, just do it.
She went on to say, “I send a lot of text messages that start with ‘no response needed’ and say what I want to say. It gives them your support without the feeling of obligation to come up with a response.”
Jess finished her inspiring talk with the following:
“I am not the victim; she is not the victim. We are mother and daughter.”
Thank you Jess for your vulnerability in sharing your story with us. Truly inspiring and a great reminder of keeping perspective and shifting our expectations.
Want to connect with Jess Hooker? Find her @jesshooker_ on Instagram and Twitter.