I knew I needed to keep Jaya informed and educated in an age appropriate manner. I filled her in a few days after I first learned about the diagnosis. We were sitting on the floor of my bedroom and I said Mommy has breast cancer. She looked at me, face a bit serious, and said “Nani-Ma (Grandma) had cancer”. I said “yes, she did”. J says, “she died”. I said, “I know”. I went on to explain there are many types of cancers and just because someone has cancer doesn’t mean they are going to die. I explained people get scared when they hear the word cancer (I still don’t like using it) and emphasized that cancer doesn’t mean death.
Kids hear things from their friends, on TV, the Internet and I wanted her to know she could talk to me about any questions she had. I emphasized that if she ever feels scared, that’s her cue to come talk to Mom (or one of her Massis (my Sisters)) to get the appropriate information. I remember telling her when we are scared it just means we don’t have all the information. I also knew she would forget and need to be reminded.
I remember she didn’t want to share it with any of her friends, so the day she told her BFF at school made me happy because she was talking about it. Slowly she told other friends and one day she came home and told me one girl said, “Your mom got cancer because she drinks too much wine.” (insert eye roll). I kept as straight of a face as I could and asked, “Do you think Mommy got cancer because she drinks too much wine?” To which she replied, “No. I think you got cancer because Nani-Ma had it.” Her response gave me the assurance I needed for that time.
Before any of this health stuff started, Jaya always seemed to hit me in the chest when we were cuddling or lying in bed together. One night during bedtime, after many times of being hit and telling her to be careful, she responded by saying “maybe you should get your boobs chopped off!” Sure. That seems like a reasonable solution to me getting hurt in the chest repeatedly because of your flailing arms. A double mastectomy later, I chuckle at that comment made innocently well before this health journey even began.
One day, shortly after a second biopsy, my left breast was tender. At this point J didn’t know about the diagnosis. She knew my breast hurt and that something was up, and she asked me why I have all these doctors’ appointments. “Is it for your boob?” I probably laughed in my head and confirmed it was. Shortly after that day, we were lying in her bed one night and using her words I told her I might have to get my “boobs chopped off”. Without skipping a beat, she said “That’s OK! It could be worse; you could lose an arm or have to chop off your leg – that would be way worse!” Yep. Talk about perspective.
After a few chemo sessions in, I remember J came home and told me she cried at school. I listened as she told me they had their usual Wednesday circle time where the kids sat in a circle and a teacher came to talk to them about emotional intelligence. I loved this. There are adults who lack EQ – so to teach it in schools is brilliant. She said she was feeling sad, and one of the boys in her class looked at her and said, “are you ok?”. Ok, I love that a little 10-year-old boy has enough intelligence to ask another girl if she’s ok. She tells me “I guess I’m not OK with your cancer because I started crying.” She then told me how this teacher pulled her and two others aside to make a smaller circle in another room and they talked. I honestly didn’t even care what they talked about; I was just so happy my girl wasn’t bottling her feelings internally.
I went to the school a few days later to thank this teacher for providing a safe space for my Daughter to express her feelings. She told me that Jaya saw me in bed a little longer than she was used too (at that time I had spent about three/four consecutive days in bed), and she got scared. This teacher also told me J said she doesn’t want to cry at home because she wants to be strong for me. My heart ❤.
I love that she tries to be strong – I think it’s important – we don’t want to break down over everything that happens to us, but I also don’t want her to keep things inside. I’ve cried in front of her before (many times) and have talked to her lots about how keeping things inside can hurt us.
Seeing me without hair was also hard for Jaya (and me!). It took some adjustment for both of us to get used to me not having hair. Especially when both of us were used to seeing me always having long, thick hair. Some might say it’s vanity, but the truth is it’s more than that. It’s a sign of illness staring us in the face, reminding us of the illness when we don’t want or need to be reminded. She didn’t want me going anywhere without a wig. I respected her wish for a little while. Then one day she had a friend coming over for a play date and told me she doesn’t want me to take off my wig. I usually wore the wig out and was most comfortable without it at home. I could understand her feelings and told her that when I go to her school, I respect her wishes and wear my wig. I stated I was most comfortable without a wig and said anyone coming into our home is our friend and will accept us for who we are. If they don’t make us feel good, they aren’t welcome in our home. That seemed to help. She wanted to tell her friend first and then brought her over to say, “Ok Mom, take off your wig!”
This is quite similar to how Jaya learned about and saw me bald for the first time. She had come home after I had shaved my head. I had intentionally covered my head with a toque. I showed her a picture of what I looked like and she told me she wasn’t ready to see me like that yet. Only a few minutes later she came into the kitchen where I was sitting at the table and said “OK, I’m ready. You can take off your hat”. She was fine.
Post chemo, post surgery I ended up with an infection that was literally eating me alive, but no one knew I was being eaten alive (not being a drama mama, that actually was the case). I was probably at my weakest at this point. Struggling to keep my own sh*t together, it was difficult to be there for Jaya the way I wanted to be there for her. She had a couple of meltdowns that had me convinced it was due to seeing her Mom sitting in a recliner all day long and not being able to do things physically with her. Emotional, stressed and panicked I told myself I would call Patient and Family Services at the Cancer Clinic to get us some counselling, when my sister Neelam suggested seeing if the school has a counsellor. This ended up being a brilliant idea! It was a new school year and the teacher from Wednesday’s circle time had relocated. I went to the school and connected with the new counsellor there. I had my own unplanned 30-minute therapy session with her! We arranged for her to see J regularly for a brief period. I hadn’t told J about any of this but after her first session she came home, ran up the stairs and hugged me and said: “Mom thank you for arranging that! I wanted someone other than you to talk too.” Wow. Weight lifted and her response made my whole week!
It isn’t easy for any member in the family to see someone they love out of commission, let alone a child. I am grateful to my Sisters, Jaya’s Grandparents and our close friends for being there for Jaya when I couldn’t. Picking her up from school, feeding her, taking her to her activities and back, hanging out with her, and so much more.
It truly takes a village to raise a child and am I ever grateful for our village ❤.
Thank you for reading!
