Day 2: In Chapter One, I have a very special encounter with someone that felt almost like an angelic experience. Talk about a time in your life when you have been “touched by an angel,” or had a God wink moment that helped get you back on track or see something in your life through new eyes.
This is going to be an uncomfortable topic for me to write about. I haven’t been actively religious since my late teens, and I don’t recall a time during which I ever considered myself a spiritual being. Try as many people might, faith simply cannot be FORCED, no matter how much it’s rammed down one’s throat. No amount of religious immersion or attempted indoctrination ever changed my deeply ingrained disdain and rejection of the Catholic faith…and a smattering of other Christian denominations that I was dragged to throughout my formative years from approximately age 11 to my early 20’s, at which point I made it abundantly clear to my devoutly religious parents to stop inviting me to church.
Here we go — my closest experience to a “wink from god” :
It was New Year’s Eve of 2017. The year 2017 was undoubtedly the roughest year of my life, as I spent every single, solitary day wrapping my brain around my daughter’s gut-wrenching (for me) and disabling (for her) Rett syndrome diagnosis. I also did virtually anything I wanted to do — if I wanted new furniture, I purchased it. The immediate family and I escaped to Canada for a week, and toured Alberta and a small bit of British Columbia. I also ate my way through about 50 cakes, cupcakes, cookies, ice cream — whatever my taste buds desired. Twenty-five pounds later…OOPS. I digress — NYE 2017!
I was buying a few supplies at the local grocery store. I had my six or so items all lined up on the conveyor belt at the checkout, and was ready to pay and head home. As per the usual, I made no conversation or eye contact with the customer behind me, until he said to me, “You’ve got it all together”.
I looked up from my club soda, champagne, and cheese items for purchase, still on the belt, and simply stared at him for a solid three seconds. I was so stunned by those five words that all I could initially muster as a response was a weak chuckle. Upon coming up with something to say in response, the words I managed to speak were something along the lines of, “I absolutely do NOT have it all together, but thanks for letting me know that it appears that way!”.
He responded by making some remark about how I had my grocery items for purchase all lined up, in a neat, linear fashion — and how this must somehow indicate that I have my life in order. For a moment I considered the possibility that this man was trying to pick me up, but the conversation was never steered in that direction. I paid for my groceries and wished him a happy new year, and he wished me the same.
Sidenote: as an afterthought, I recall thinking to myself, “I bet his name is some typical ‘white guy’ name, like Steve…”. I have no idea why that thought ran through my head, but it did! Reaching out to shake his hand, since he had bestowed those five resonating and kind words to me, I introduced myself and told him my name. His name was Steven. 🙂
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Day 3: Also in Chapter One, I talk about how sometimes it takes losing yourself to find yourself. Share a time you felt lost, and how you got “found.”
We have to sometimes lose ourselves to find our true self. Ain’t that the truth.
I’ve been through two exceedingly traumatic and difficult times in my life. The first was when I was 17 years old, depressed, and suicidal (to the point of downing a 60 count bottle of Tylenol PM, and chasing it with a bottle of SKYY vodka). Life looked pretty bleak…I was still being forced to go to Catholic mass with my mother & to baptist sermon with my father. Life at home was rocky. My dad was a supreme jerk; my mom would either overlook or reactively explode at my father’s anger issues and emotionally immature fueled passive aggression. In other news, I was going through heartbreak over a failed relationship…and at age 17, it felt like I would never get over it. I remember how terrible and seemingly permanent those emotions felt. I’d had suicidal ideations for several years at that point, not really knowing that it was unhealthy and abnormal to think such things — and I was a despondent and sullen kid, to boot. When I finally realized that there was life beyond living with my parents…my outlook improved. It didn’t improve much, but at least I had a will to live again. Going away to college helped me immensely. Even though I didn’t perform all that well academically in undergrad, I at least figured out how to “find myself” at least a little bit. I lived on my own, away from home, in another city. It was a start. Finishing graduate school (with a 3.5 GPA — MUCH better academic performance later in my academic career!) and earning my doctorate was fantastically liberating. I even had a mini self discovery my first year out of school — I learned how I wanted to practice, and how I didn’t want to practice. I learned how to run a small business, and how to educate people on their health & the compounding effect and importance of daily choices for our overall health. My college experiences, and my first year in the workforce after college, helped me find myself professionally…I’m driven by helping people, and secondarily, having enough money to live comfortably, and most importantly, enough money to travel.
All of the above pales in comparison to post-diagnosis days. The most trying and heartbreaking period of my life began around September of 2016, when I made the first of many trips to a pediatric neurologist on behalf of my developmentally delayed 1 year old daughter, “D”. At that juncture, I still had it in my head that D would somehow “catch up” to other 1 year olds…that she would eventually crawl, and talk, and walk. (Fast-forward two years, and she still doesn’t do any of those things…but I digress.) In November of 2016, I received a phone call from D’s neurologist that she had tested positive for a genetic mutation disorder called Rett syndrome. (More on the specifics of that telephone call in Day 4)
I cried for 58 days.
I stopped eating. I stopped sleeping. D and I would take 3 mile walks (she in her stroller, me on foot) daily. For the first time in approximately 17 years, I again truly wanted to die. I was plotting ways to off both myself and my daughter. Could I drive into a ditch? How about off a cliff? I thought our lives were over, so what was the point of living? What was the point of all of that schooling, so that I could help my clientele move better and feel better? And what in the fresh hell was the point of all of my human biology background and anatomical expertise, since there was NOTHING I could do to fix my daughter? These were the thoughts that were on the most horrid loop of anxious neurologic impulses running through my mind…until I at last sought medical attention for my returned suicidal ideation.
The tears finally dried up on Saturday, January 14, 2017 — the day after I began taking antidepressants.
Some days, most days, are pretty good. I now have a thriving 3.5 year old. It isn’t perfect, but there is progress….progress with my darling D, as well as medical/research progress. I garner joy from playing and laughing with my child, and seeing her interact with her peers and care providers at her beloved daycare. Her therapy clinic is filled with amazingly skilled and caring staff. It’s a safe space for both of us to go to her therapy appointments. I don’t get any stares or rude questions — we are simply greeted with smiles and open arms. The other thing that I’ve found that I am decent at doing is fundraising for Rett research. It makes me feel like a useful contributor to the greater picture of the future of Rett syndrome.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Day 4: In Chapter Two, a phone call one Monday morning changes the course of my entire life and my family’s lives. Share a time that you received life altering news, good or bad, and how it impacted your life.
Thursday, 17 November 2016 — 1:37 p.m. I got a call from D’s pediatric neurologist at TCH. I was stressed out about D’s lack of nap that day, and exasperated at having to start occupational therapy with her that same morning. My annoyance was palpable, and the doctor asked if someone from TCH had already contacted me. I told her no — no one had contacted me. At THAT very moment I knew that the only test we’d been waiting on for over two months, the Rett syndrome genetic mutation marker lab test, was positive.
She confirmed the news, and provided me with the direct phone number for the Rett Clinic at the Blue Bird Circle pediatric neurology center in Houston. “The only Rett clinic in Texas!”, Dr. Takacz touted. I know she said that to me with the intention of making me feel better about appropriate care for my daughter being in such close proximity to where we live, but I just felt sick. I really felt like my life was over…and in a way, the life I anticipated WAS over. A period of grieving was to ensue.
I still grieve the life I envisioned for my daughter. I wanted so much more for her. Maybe we’ll still live to see drastic, life-altering, and amazing changes regarding viable treatments for Rett syndrome.
Enough emoting for one day. Peace.
A girl with grit. 