I Don't Know What I'm Doing
The last eleven months have been a blur since my Mom passed. I've come to the conclusion that my mind is digesting the events of our cancer war- some sort of PTSD that caretakers go through in the aftermath of cancer.
While cancer was the absolute f*cking worst, there were some glimmers of light. I would say to my Mom that I hated that it was cancer that was the reason we were spending so much time together- but I was so happy that we were able to spend so much time together.
When the diagnosis of cancer came to surface, I realized very quickly, I didn't know what I was doing. I was working a full-time 9-5 gig, head of my department. I was making great money, had health insurance...I had worked years to become head of Technical Publications as a Graphic Designer.
Trust. Faith and hope.
I made a promise to my mom that I would be there for every bit of this journey.
Kate was on board to help with meals and documenting daily medications. My Uncles and Aunts were on standby promising to swoop in the moment I needed them (and they did). Rob encouraged me to do exactly what I needed to do and be wherever I needed to be. My brother (who no longer speaks to me) was a different story. I asked my brother for help and he replied that he just started a new job and wouldn't be able to take time off ...that he had a house and a mortgage and yard work to do- and that it looked like I had everything under control.
I was scared and I didn’t know what I was doing. Besides Kate and Rob by my side, I was mostly alone and would need to figure it out.
Cancer would require ALL of me. I would need to take a step back from my job, my relationship; my normal would-be put-on hold.
I called my HR department and through tears, begged them for understanding and support. I had NO idea that Family Medical Leave was an option and I am so grateful they offered it to me. Honestly, I was prepared to lose my job. I could always find another job. The time with my Mom would be the most precious - I knew it was all we had left. Time.
Rob (unfortunately) had been through cancer with both of his parents, losing them at a young age. From day one, he reminded me that he would be there and that WE weren’t going anywhere. He encouraged me in the most loving way to spend as much time as I needed to with my family.
The lessons: Everyone is a teacher.
In the beginning of cancer-land, I stopped sleeping and took myself to urgent care. A nurse comforted me and told me that I would become strong enough for this journey. She said, “you can’t drink a gallon of water in one sip”.
The doctor that gave my Mom her diagnosis said: Faith. Hope and Trust- words we scribbled on her mirror (and still remain) …words that seemed to be from some other space…from the other side.
I started a journal, documenting every doctors visit. I wrote down Mom’s weight and hemoglobin count, heart rate and oxygen levels. I had no idea which of these numbers was the most important - I just wanted to have them all.
My ears strained for any positive slivers of hope. I wrote that stuff down too. I journaled my fears while my Mom was in radiation, as if I was writing to God asking for more time.
My days became a different version of work. I would wake up at my apartment and take myself to a yoga class or a run. I learned that self-care was essential for my survival. I would arrive at my Mom’s and Kate would give me the run-down of what my Mom was able to eat for breakfast and what pills she took. I would turn on my laptop and sign on to work, balancing this new life.
I leaned on faith and trust and my own gut instinct that this journey would require me letting go of things that were stable. That I would learn to endure the hardest…and I would survive.
There are days where I can’t get myself out of bed. Or when I unexpectedly cry snot-sobbing heaves of emotion. There are also days when I feel absolutely normal and as if my Mom is just on vacation. Survival mode.
I wish I had learned more from her. And now that I’m in some sort of role as caretaker, I realize she was a real-life superwoman.
I’m doing my best. I am not a Mom. I am a newlywed and a freelance designer. I am a yoga teacher and now I am a caretaker.
Kate is super high functioning special needs. She knows how to make a bangin’ salmon dinner and a killer cup of coffee. She’s comfortable driving certain routes but not comfortable parking (yet). She’s not a fan of change. She’s an artist. She works in jobs that support her skills (thank you Y2 Yoga and Zabs).
I am learning in this newest role as Kate’s caretaker, that a certain amount of creativity, guts, backbone and endurance is required.
Kate expressed that she would not be able to go back to her old job working in a retirement home. It was too sad for her. I get that and I support her. But then what were her options? Jobs are incredibly limited for special needs- why? Sure, I get it- maybe I don’t want Kate figuring out my tax returns (math is not her strong suite or mine)- but she has incredible gifts. She’s queen of organizing, kind, she has an amazing memory, funny, artistic…surely there has to be something- But what?
What if I ask someone to create a job? Thank you Tanner Bazemore (and staff) from Y2 yoga for hearing my plea and creating a space for Kate to work. The environment at Y2 yoga has been a blessing. Kate feels cool, useful and good at making those locker rooms shine! She has connections and people that hug her hello.
Open enrollment for insurance recently started and I very quickly realized- I don't know what I'm doing. Again.
Did you know that a dependent, for insurance purposes, is considered someone under the age of 26? Well where does someone like Kate who is 31 and lives at home, fall. She doesn’t require medical assistance- but she needs assistance paying bills (including insurance). Since she is high functioning, she works, but no way does she make enough money to pay for her own insurance.
With the help of an amazing insurance company (shout out to Billy Jordan Insurance) and my INCREDIBLE attorney to help sort through the jargon, we were able to figure out a loophole. (and maybe it’s not a loophole but it wasn’t “known” information- it took some digging) …
My Mom instilled in me was to always listen to my inner voice. Trust my gut …
So, here is what I am learning lately: there is a lack of a support system for special needs. Everything is hard. Finding a job, resources, support groups, making friends- knowing what’s available- it’s all hard to find.
Here is my proposal:
Who’s in my shoes? Similar shoes? Who needs help with their shoes?
What I am saying is this: I feel a recent calling to create a network for the Special Needs Community …small groups have taken this on (applause to Zab’s community) – but we need more. And I can’t do it alone. But maybe I can. Cancer has taught me to endure the hardest, the worst….to be brave and speak up.
I don’t know what the next step is, and I don’t know what I’m doing-but I feel like this is a beginning…
I’m speaking up.
Love and peace-