How I Prepared My Family for My Cancer Journey
I believe 100 percent in front-loading our children, especially our kids on the spectrum. They need help with transitions, expectations, and tools to deal with life. I hope that we all make accommodations for ourselves . . . we are human after all.
When we acknowledge our preferences and accommodate ourselves to add comfort and joy in our lives, we create happier and safer moments for ourselves and everyone around us.
As a result, we are typically calmer.
When we’re calmer, we bring that feeling to our interactions.
As we interact with our children when we are calmer, we model this feeling and behavior to our children.
I say a big, honkin’ YES to teaching this type of behavior to our children! Our autistic children often struggle to follow the “normal” course of learning social interactions, and I feel that modeled behavior is paramount in their learning successful life skills.
Insert Cancer Diagnosis
Now, to be crystal clear, I wasn’t expecting a cancer diagnosis.
I definitely didn’t want it (who does?) but there it was: “You have cancer, and there’s a lot of it in your right breast. It’s Stage 0, but there might be more aggressive cancer in there, and it all needs to come out as soon as possible.”
Insert: Breathing. Freaking out. Melting to the floor. Breathing. Gasping for my next breath. Crying. Breathing. Repeat.
So then I needed to get through this life-changing ordeal. I also have two kids and they had to go through this with me because I simply couldn’t hide it.
I’m a strong, single mom, and I wanted to help my children get through this with strength, grace, clear guidance, kindness, love, truth, humility, and as many giggles along the way as possible.
Here’s how my thinking went down in preparing myself and my kids for the months that followed my diagnosis.
First, my thought process was that this diagnosis was none of anyone else’s damn business except mine and my family’s. I didn’t want anyone else’s drama to impede on my own drama that had just arrived onto my doorstep.
I typically focus inward and retreat into my bedroom for silence, reading, and rest for my individual healing. I’m not sure where this originates in my modus operandi, so I honored that first and foremost.
With that thinking, I felt that the best choice for me and my kids was to keep my diagnosis as quiet as possible. I’m a bit of an introvert in the ways of healing myself, and I wanted to move through the journey in a way that worked best for me, which was just me, my boys, my closest of close friends, and people that I would need help from. And that would be it.
Step 1: Share with my kids
Within forty-eight hours of my diagnosis I sat down with my kids and let them know what was going on. I told them the diagnosis, emphasizing the Stage 0 part, the planned treatment that I knew up to that moment, and then I shared about many of the things I had no idea about yet but we would have to go through in the coming months.
I said it was a lot to hold and our lives were about to get very difficult. My ex-boyfriend was still with me at that time, and we explained very clearly how they needed to help me with any and all tasks while this was happening. We strongly expressed that they were plenty old enough to help (twelve and fifteen) and that my treatment and healing was the families #1 priority.
I let them know that any and all questions were not only encouraged, but they were critical to getting through this as easily, kindly, and powerfully as possible. Open communication was to be our biggest strength.
I wanted this experience to be an open-ended conversation, and anytime they were curious, scared, frustrated, tired–whatever–to bring it to me or someone they trusted.
Step 2: Gather my team
Here’s how I gathered my A-team to prepare for my surgeries:
First, I shared with my inner circle when I was ready. These were my closest of close friends, my ex-boyfriend, my ex-husband, and my kids.
The Practical Team
Then I shared with the people in my life that could help with day-to-day things that would have to be taken care of.
I needed drivers for my children while I was in surgery and recovery. These drivers needed to know that if I called them last minute that I was sick and I would need some extra help driving them.
Luckily, one of the people that I’d already been depending on to drive my older son was on the “close friends” list, so I told her and I knew she’d do anything that I needed.
My younger son was a little more difficult to get transportation for because we lived about thirty minutes from his school. There was one wonderful mom that I reached out to who is a very good friend. She lived kinda close to us, and she and her husband were all in to help me out. Gratitude!
After that, I felt the need to share my new news with my youngest son’s two teachers. I wanted them to be on the lookout if the word “cancer” came up in conversation or in any discussions that might develop in the classroom. I wanted Mason’s teachers to be fully aware of what my youngest son was having to move through, since he knew most everything that what was happening to me and I didn’t want any unnecessary fears or stories given to him.
He had been going to that school for three years, so his teachers were like an extension of our family. This was a small Montessori school where the kids can move around the classroom and have spontaneous conversations most all day long. I’m not sure I would have been concerned or shared had he been in a more structured setting, but I definitely felt safe sharing. I was honored that they were so supportive and receptive.
I didn’t tell anyone at Michael’s school. I didn’t know anyone there as this was his first year at this high school, and he already had the transportation taken care of with a close friend, so that was easy.
And speaking of supportive and receptive: my mother-in-law.
She’s actually my “former” mother-in-law but she fit my needs perfectly and had recently stopped working. She had the time needed to come and stay with me and her grandbabies. She would really need to help with the majority of the driving, cooking, and caregiving for me, Michael, Mason, and our three cats.
I reached out to her, and she immediately agreed to come for my surgery. Yay! She agreed to drive the kids to and fro for the week after I recovered, even though she admitted after she got here that she was nervous about that.
As a surprise bonus, she made me my very most favorite and delicious Indian food, which, when I could finally eat, she delivered straight to my bedroom. Perfection.
What an incredibly fortunate and happy gift during that difficult and crazy time.
Support Specific To My Kids
Next, I gathered an extra layer of support in the months ahead specifically for Michael and Mason.
I shared with our family behavioral therapist and Michael’s meds doctor. They were integral parts of our family circle and were intimately familiar with the ins and outs of our family’s strengths and weaknesses.
I made sure Michael’s meds were up to date and we committed to not making any medication adjustments until all of my surgeries were done and all was okay.
How incredibly fortunate I felt having such powerful people in our life. I’m ridiculously grateful for those relationships that we had been developing for so many years.
We didn’t know how Michael was going to react to me being sick, but with all of the support, he seemed at ease most of the time. His super power is talking, so I essentially let him talk and set up a few extra therapy appointments for him so he could talk, talk, talk and work through any anxiety specific to my health.
I scheduled several appointments for the family and specifically Michael in the immediate weeks following my diagnosis.
These two modern day superheroes brought their full wisdom and assistance to Michael and Mason while we went through this difficult and scary cancer journey. They were just so quickly reactive, gracious, and supportive.
People are awesome, aren’t they? I so love and appreciate supportive, generous people.
My kids were given a generous invitation where they could email our therapist or meds doctor anytime with any and all concerns, questions, or pretty much whatever they wanted to. They didn’t end up taking advantage of this resource, but they knew those two people were there for them if needed.
Support For Me
Of course, I needed support for myself. It’s often so difficult to say, “I need help.” Ugh.
But I knew the perfect person, and though I was a bit nervous asking, I had worked with this beautiful and dear friend on and off for many years. If she could help, she’d be my perfect fit.
I put on my big-girl pants and reached out to her. She said, “whatever you need” so we started working together in the weeks leading up to my first surgery.
She has so many skills and one of them was a full presurgery preparation process! WHAT??? How lucky was I???
We worked together, going through my affirmations and safe spaces in my heart and mind, and from there, she created a meditation CD for me to prepare and create a mental, psychological, and emotional connection for my surgery.
I told her in the beginning that my main goal was to show up to my surgery already feeling complete and healed from the surgery. That’s exactly what we did together.
I shared with a few more of my dearest friends, and they helped with my work schedule, listening to my tears as needed, helping to calm my anger, and even accompanying me to appointments.
Some appointments were no brainers and I’d go by myself.
Some appointments I knew I needed help with though. If I was unclear about the outcome of an important decision or appointment, I’d request that someone come with me to help me feel through what would be best.
Or if I knew I was going to be a jerk (that became a thing when I felt like medical people were complete ding-dongs) I would ask for a partner to rein me in so I wouldn’t do all the swears and stuff. I’d always plan for breakfast food after these appointments because bacon, eggs, and coffee were my superpower boosters.
It really helps to have such incredible friends to love and feel loved in return. My heart is open and grateful for my tribe –thanks to you all.
I’m also really grateful for the Flying Biscuit, which is where I spent most of my post-appointment moments.
And all the while I was going through these medical and therapeutic appointments, my kids remained steady with “regular life.” I don’t remember them missing any school–even the day of my surgery.
The rule from our family therapist was that the kids were to continue through each day like it was business as usual. The only interruptions were scheduling mess-ups and appointment changes; otherwise, school, homework, the gym, and our steady bedtime were the rule.
Final Piece Of the Puzzle
The final piece of my A-team was my no-longer-working-with-me-because-I-couldn’t-afford-it cleaning lady. I couldn’t necessarily afford her services through my surgery either, but I knew that once a month could really make all the difference in my sanity.
Having her come to my house when I got my diagnosis seemed imperative for my survival, so I counted it in my “medical expenses” budget. I literally felt anxious until I mustered up the courage to call her.
She made it work and it was exactly the moment when she said yes that I felt ready and at peace to move powerfully through this experience.
And . . . GO!
Then we essentially went through each day the best we could.
I was fortunate not to have too much physical pain. My issues were mostly around my mental, psychological, and emotional health.
I wanted to feel confident and peaceful heading into my surgeries. I did an incredible amount of work with my therapist and healing practices. Getting through this cancer became my main job.
I forced myself to journal, paint, and take quiet time to meditate. I made myself go to bed when my kids did and I ate healthy foods as much as possible. I actively chose to care for myself above work and household chores.
I still was working and I still cleaned my house, but it wasn’t to the degree that I typically did. I was committed!
When my first surgery was done, my kids had very specific instructions as to what chores needed to be done at what time.
They were responsible for making their lunches every night before school so there was less chaos in the morning.
They did all of the laundry for about two months because I wasn’t allowed to lift more than ten pounds or reach my arms above my shoulders. My kids helped with dinner as needed and brought dinner, tea, snacks, or meds to me anytime I needed.
Micheal was really into helping me, which was something I wasn’t sure would happen. Their therapists just really talked over and over about how they were responsible for helping with all of the house chores and they had to do it and not ask me for anything because my only job was to heal.
I really loved knowing that my kids were learning how to care for someone so attentively. It was so beautiful for me to watch and benefit from.
I was permitted to drive after seven days, so when my mother-in-law left, I pretty much just drove them to school and back home again.
I’d sleep, work, watch movies, and go back to carpool. I devoted those weeks and months after my surgery to healing myself . . . and ultimately, my entire life.
As I remember all that I did at that time, I feel super proud of my actions through that difficult time for me and my kids.
Following is a pretty complete review of the steps I took that helped my children through my cancer journey without any major glitches. I hope they help you in some way.
Note: this is specific to my cancer journey but can be tweaked for any major shift that’s going to occur.
- Get difficult news you don’t want
- Come to grips with what’s happening
- Eat comfort food as needed
- Gather your kids and share with them in an age-appropriate way
- Share with them that you’ll do everything possible to help them through it
- Make sure all medications for your autistic child are in stock and refills are scheduled – muy importante!
- Assure your children and family that you will do everything possible to stay healthy and focused on healing
- Create a real-time plan for family sharing, questions answered honestly, and support people they can reach out to
- Have your children practice the emergency plans you’ve put in place (in my case, it was emailing their therapist)
- Put your oxygen mask on each day (in a symbolic way) to take care of yourself as much as possible
- Enlist outside help as much as possible for any area of your life that stresses you out (for me, it was getting my house cleaned)
- Continue to be as honest as possible with yourself, your kids, your family, and your friends every step of the way
- Check-in with your kids at a scheduled time each week to see if they have any questions, comments, concerns, or suggestions
- Go on about daily life as normally as possible while doing your best to make the best choices for your health and the health of your family
And that was pretty much how I helped my children and myself through my cancer journey.
I do hope something listed here helps you build a stronger relationship between you and your children.
Life is going to happen so when we intentionally take time to really get through life the way we want, magic and strength are often the result.
So much love and healing to us all,
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