There is no way to sugar coat it – cancer sucks. I consider myself so fortunate in my cancer experience. I avoided chemotherapy and radiation, but it was still a very difficult journey. There is no way to battle cancer and not feel loss. When I reflect upon the difficulties my children faced and my limitations with them I feel that loss most acutely.
Women diagnosed with breast cancer under 40 account for less than 5% of breast cancers diagnoses(1). The median age of diagnosis in the U.S. is 62(1). Given these facts it is logical to conclude most are not facing a breast cancer diagnosis with young children.
I am in no way diminishing the experience of a breast cancer diagnosis at any age. I am simply pointing out that battling breast cancer with young children is atypical. No doubt the experience of a small minority. Their age alone implies a level of dependence unique to their stage in life.
My youngest was 2 years old when I was diagnosed with breast cancer. Each morning when he awoke, he came directly to me. He would reach his little arms up to me waited for me to lift him. I would swoop him up and carry him down the stairs. I happily carried him throughout the day. Cancer would change this.
My middle son was 5. In pre-kinder at preschool. I packed his snack every day, got him ready and took my turns with carpool drop off and pick up. He has always been a mama’s boy. He snuggles and cuddles with me every chance he gets.
My boys were still home with me more than they were away. We constantly went places and had friends over for playdates. I am a stay-at-home mom who finds every excuse to be out of the house. I don’t like feeling cooped up. I enjoy being active with my children.
My daughter was 6. In first grade. I packed her lunch every day, helped her get ready and also my turns with carpool drop off and pick up. Each week I took her to gymnastics and stayed to watch.
After my lumpectomy surgery, mornings were rough for me. I was sore and tired. My kids set about doing everything I typically did themselves without even being asked. They got dressed, made their own breakfast (usually just cereal and milk, but still!!!), packed their snacks and/or lunch.
I will be honest, I was amazed and so grateful for how they stepped up. One day early on in our new routine at pre-kinder pick up, my son’s teacher pulled me aside. She wanted to make me aware that my son’s snack for the day had been four granola bars. She joked he must have thought he was going hiking.
It was a reprimand of sorts, but I could not have been more proud. It could have been four candy bars for all I cared, let alone a healthy snack! He did it! By. Himself. He made a healthy choice. By. himself.
I don’t share this to condemn that teacher. I do not. I am so grateful for her. She had good intentions and my son’s best interest in mind. She also had no idea what we were facing at home. At that point, neither did my kids. They knew I had had surgery, but no more. Later when I invited her into my diagnosis, she proved to be an amazing support for my son.
Once my lumpectomy confirmed my original diagnosis I told my kids I had breast cancer. I wanted to be transparent with them. I sat them down and explained I had breast cancer. I compared it to when they didn’t feel well and I took them to the doctor. The doctor made them feel better. The doctors are going to make me better too. I am going to be fine.
Then our dog died. Our dog’s breed’s life expectancy was 10 to 12 years. One month shy of her 13th birthday, our dog Lido had a bad day. I took her to the veterinarian and they couldn’t make her better. It was rough. My kids were devastated, but I explained that our dog was incredibly old. That pacified them some.
And then Great-Grandma was diagnosed with terminal cancer. I 100% believe in being transparent with my children, but I also believe in being the judge of what they can handle and what is healthy for them. So I made the difficult call. I asked the family not to share specifically that Great-Grandma was dying from cancer.
I did not even want to introduce the possibility to them of associating cancer with death nor the fear I was dying or could die from cancer. Let me be clear – my cancer was never considered terminal. Thankfully we caught it early.
Once I invited my children into my diagnosis life became very different for us. Discussions of my breasts or “boobies” became commonplace and normalized. My chest became less private. My kids wanted to see the incisions from surgeries. They wanted to know how I was healing.
We discussed my reconstruction and visits to my plastic surgeon. Later on in the process, I even took my older two to watch an expansion at my plastic surgeon’s office. Afterward my middle son asked if he could watch a surgery too. Much to his disappointment that was not an option.
My middle son is pensive. Given this, I knew he was thinking about my breast cancer and my surgeries. I knew it would be especially difficult for him given our closeness. Yet, oddly out of character for him, he said nothing to me.
Those questions and concerns eventually surfaced, but not at home, at preschool. That same teacher who chided me for the granola bars, became his go to person for comfort. Again she would pull me aside and share these interactions.
One day he put his head down on the table and cried. Another he went told her “My mommy keeps having surgeries and she’s not getting better.” Yet another he had an outburst of anger at a classmate who disagreed with him about my surgery date. Then he cried. On one instance a classmate said something about me dying.
Every time, he went to that teacher. He hugged her and cried on her shoulder. She often shared she didn’t know what to say. There are moments in life when no words are required. Just your presence. These were those moments.
He needed a safe embrace. A shoulder to cry on. A place to let it out. It broke my heart and made me cry too. I am so incredibly grateful for her support and that he felt comfortable with her to express his emotions.
Following my mastectomy we had arranged for my in-laws to watch my three children for three weeks at the recommendation of my surgeon. My forced mommy vacation. Those three weeks turned into two months for my older two and two and a half months for my youngest.
My youngest went from viewing a sleepover at Nana and Papa’s as a treat to punishment. Those extra two weeks at their home made him feel excluded. Even now, a year later, he forgoes his turn for individual sleepovers at their house. My older two still view these occasions as a treat.
While my kids were with my in-laws I tried to see them on a regular basis. Some days, they came to visit me. Typically individually, which was easier to control their interactions with me. My husband was very much on the defensive when it came to their contact with me and preventing any accidental injuries or pain.
At first, our physical contact was limited. Gentle touches and very gentle hugs while I sat in my recliner with pillows buffering my chest. As I healed this changed. I was able to hug them normally with minimal discomfort.
As I became more mobile, we transitioned to visits with all three at my in-laws’ house. It wasn’t until a couple weeks into this phase that I got a glimpse of the aftermath of these visits. I discovered literally all three of them cried for at least an hour after seeing me. The rest of the evening was devoted to calming them down after I left.
As a mom, not being able to mother is torture. Heartbreaking. I felt terrible and terribly helpless. I missed them. I desperately wanted to be with them, to have them home with me. Yet, there was no way I could have cared for them at that point.
In an effort to ease the post-visit meltdowns we decided to designate a set time every day for my visits. I arrived at 5 pm and left at 6pm. They had just finished dinner and still had an hour after my departure to get ready for bed and calm down. The kids knew the routine. Having a designated time helped. Knowing I would be back the next day at exactly 5pm helped calm them after I left.
As my children transitioned to being home, my role in their lives was forced to change. I had limited energy. It was an accomplishment to make it through the day taking my kids to school and picking them up with just one nap. My middle son frequently asked me at school pick-up – “Where are we going today? Who is coming over to play?” When I answered nowhere and no one he would declare – “This is boring!”
I was not permitted to carry my youngest. We had to adjust. Our previous morning routine of me carrying him down the stairs was no longer possible. Our compromise? Holding hands. This pacified him.
When we went out I couldn’t lift him. I never realized how often he required lifting until I could not lift him. An example of this was shopping. He typically rode in the seat in the shopping cart and I used to lift him into that seat.
This meant learning how to help him get into the shopping cart seat independently. If I was lucky and found a shopping cart in the parking lot I could open my side van door and pushing the front of the cart into my van. He could then climb into the basket and from there into the seat. When this was not an option, I would grab a cart and we would walk to a bench or chair he could climb onto and then climb into the basket to climb into the cart.
I am sure many on onlooker wondered at our overly complicated and odd routine. Once a well-meaning worker even stepped in to lift my son after my son told him I could not lift him. My son was so upset. By that time he rather enjoyed and relished in his newfound independence.
In retrospect one of the greatest losses from that time was not being able to hold my youngest. He was only 2 once. He was only small enough to be held for a season. That season has passed and I missed months of it because of cancer and surgeries. I mourn that loss. I will never get that experience back.
My other greatest loss when it comes to my kids aside from just time lost with them being away was the comfort of a mother’s bosom. That may sound odd, but let me explain. I never realized how frequently my children sought comfort in my bosom. Snuggling on the couch. Reading. Throughout the day they would sit next to me and rest their head on my bosom. It was so natural. So sweet.
Post-surgery I was too sore to allow this. There was a brief period where it was permitted and then I began reconstruction. I will delve into reconstruction more later but let me just say in the early stages my breast literally were rock hard.
My children would snuggle up to my side and go to rest their head on my chest, but the moment their head touched my chest they pulled back. It was not comfortable. This was temporary. The permanent implants are much more like natural breasts, but during this season my heart broke every time this happened.
Not wanting to end on a downer, I will say this, there were also many sweet and funny moments with my children. My children showered me with pictures, cards and crafts of encouragement and well wishes for my healing.
My daughter came home from school one day to share her music teacher had cancer. She was so concerned. I told her we could pray for her and then I remembered a basket I had been given filled with goodies. I suggested we make her music teacher a basket too. She loved the idea and was so excited to assemble it.
When it came to delivering the basket, all three of my children went and they were all so excited to give it to her. We learned she was battling breast cancer too. My daughter gave me regular updates on her teacher and prayed for her. It was so sweet to see her enthusiasm to support and encourage her teacher. Cancer was personal to her. She wanted to be included in her journey and that was incredibly touching to see.
Early on when my youngest came to visit he always ran to the table beside me to play with a back scratcher. The end of the back scratcher was a bear paw. Every time he picked it up, he asked me if we could take it to the zoo to scratch the bears. He was convinced they would enjoy it given the bear paw. His comment always made me laugh.
My youngest immediately changed his bedtime prayers to “Thank you for mommy feeling better.” To this day that is all he prays. I love the faith it reflect too. He never asked for me to feel better. He just expected it. He was thanking God before it ever happened. My youngest also referred to my wounds as surgeries. He frequently asked if my surgeries were better. I will never forget stepping out of the shower one morning to discover him outside. He immediately began clapping his hands, jumping and cheering. Yelling “Your surgeries are better!” What a way to start the day!
His comment always made me laugh. My youngest immediately changed his bedtime prayers to “Thank you for mommy feeling better.” To this day that is all he prays. I love the faith it reflect too. He never asked for me to feel better. He just expected it. He was thanking God before it ever happened.
My youngest also referred to my wounds as surgeries. He frequently asked if my surgeries were better. I will never forget stepping out of the shower one morning to discover him outside. He immediately began clapping his hands, jumping and cheering. Yelling “Your surgeries are better!” What a way to start the day!
- “Age – Breast Cancer in Women.” The Susan G Komen Foundation. 2019. ww5.komen.org/BreastCancer/GettingOlder.html