Feeling Connected While Apart
How I Tried to Feel Connected to Home During Lengthy Treatment Cycles
One of the hardest parts about going through a cancer journey is its effect on the whole family. The most basic being a once cohesive family now operates separately. I missed coming home to both my children, preparing dinner, or just casually sitting outside watching Big Sister play. The simple mundane moments of togetherness seemed like a different lifetime and I felt like I took them for granted. My daughter missed me helping do her hair in the morning and our after-school Starbucks trips every Friday. I missed sleeping in my bed, cooking for my family, and being able to hug them. Pey missed her sister. My husband missed coming home to a full house and caring for all “his girls.” Being separate was isolating. There were plenty of offers for help but going through this during a pandemic made help almost impossible.
Pre-pandemic cancer journeys are intrinsically different from those of us that have had to do this during. Visting policies allowed both parents and siblings to be in a child’s room. Extended family members or friends would stay with the child so parents could have a break. There were playdates with siblings, cousins, and/or friends. I remember walking in on impromptu potlucks in a child’s room. The support system for the family was always apparent. To the point, that there were even times I had to talk to families about limiting visitors. This doesn’t even include all the support programs and events that were available to families from non-profit organizations. It was a very different world from what I experienced, to say the least. Due to strict visitation policies, Big Sister was not allowed to visit at all. Only one parent or guardian could be at the bedside at a time. Leaving me to walk with Pey alone to the OR for several surgeries (including her two brain surgeries) except for her nurse. I bring all this up because as much as we wanted to rely on our family and friends for help during this time, it was almost impossible. What made it bearable was that our friends and colleagues were the ones taking care of us. I was often given their free meal that was being provided to the staff or asked if I wanted to order meals with them. I was brought coffee, meals, and snacks. Although we were being taken care of, being apart from half of my family was difficult. So we were challenged to figure out how to stay involved in each other’s lives while being apart.
I was very fortunate that all of Pey’s hospital stays were within walking distance of where my husband works. Most of the week, he would have his lunch break with us or stop by real quick after work before heading home to Big Sister. On Friday nights we would have dinner together before we switched out. A luxury, some parents didn’t have but my husband was able to accomplish by wearing his work badge. We FaceTimed a lot. Even if we really didn’t have much to say, I would watch him drive to and from work, cook dinner, or wash the dishes. Sometimes, we even coordinated a time to eat with each other. After putting Big Sister to bed, we would just talk or do our own thing but still stay on the call. Although it wasn’t the same thing as being in the same room, it helped us feel together.
Staying connected to Big Sister was much tougher. She had recently turned 4 years old when Pey was diagnosed and didn’t really understand why Mommy and Pey were always gone. It didn’t help her attention span for FaceTime left a lot to be desired. I would talk to her while staring at the ceiling or carpet. Eventually, she realized that I was a captive audience to her games. I would be the movie screen for her dolls or would ride with them in her playhouse elevator. She attempted a few times to play hide and seek with me which didn’t work out as well as she had hoped. So I tried to focus on creating planned activities for us to do together while I was home briefly for part of the weekend. We would talk about it at the beginning of the week and then I would order supplies for a science experiment (she was really into those at the time), baking treats, spa days, or movie nights. I also started writing her letters twice a week for my husband to take home with him. I would tell her how much I missed her and how much fun I had doing whatever activity we had done. At night we would FaceTime so I could watch as she brushed her teeth for bed, was read a book, and sang to sleep. This little emotional connection to home made me feel like I wasn’t totally missing out on her day. When Pey and I had to move to San Diego for over a month of treatment I realized I would miss her last day of preschool, TK orientation, and her first day of TK or “Big Kid School” as she calls it. To feel a part of the moment, I took her with me to pick out a backpack and lunchbox. The weekend prior to her first day I surprised her with a personalized pencil box with all her school supplies in it. When she casually brings up the time when we were away, she tells me that she missed us but then reminds me about something we did together. I know I’m lucky that she has been flexible throughout the last 10 months and being open with her when she asks questions and having special moments with her helped our bond.
Being separated from part of your family to be with a child with cancer is difficult for any family regardless of the circumstances. The feelings of isolation are intense and the stress of being the caregiver or the one in charge of everything else takes a toll on a relationship. Finding the time and being emotionally available to be present for your other children can be challenging. Adding the restrictions in place by a global pandemic, made this even more difficult because we had no option for family and friends to stay with Pey or for Big Sister to visit to have family time. I responded to these challenges by using FaceTime to see what my husband and daughter were doing. I also focused my energies on creating special moments for Big Sister to show her how much I missed her, loved her and how special she still was to me.
So my advice would be this: think of what is important for you to feel connected to a partner and any siblings. Use technology to your advantage like playing games ( I do not recommend hide and seek), eating dinner with them, sharing a coloring book, sending e-mails, streaming the same episode of a favorite show or movie to discuss later, and being a part of bedtime routines. When you are home plan simple fun activities to do one on one or together as a family. Be present (i.e. mindful) and enjoy every minute.
