A few weeks ago I received an email that brought tears to my eyes from a mother coping with incurable breast cancer. In it, she explained how she was preparing her family to deal with her illness and, more importantly, for the time when she will no longer be there to support and look after them. She gave me permission to share it with you. I hope it touches your life as much as it has touched mine.
I was at your Pathways to Resilience conference a year ago, and while there, I was happy to receive the postcard “Nine Things Children Need to Be Resilient.” I also bought and read I Still Love You: Nine Things Troubled Kids Need from Their Parents (although I think it’s for all parents, not specifically parents of troubled kids!!). The postcard was promptly put on my fridge as a reminder to help me in parenting my kindergarten-aged child and supporting my young adult kids as well.
Fast forward six months to when I learned that my previously treated breast cancer had metastasized (spread) to my bones. The kicker with this: there is currently no cure for metastatic breast cancer. The treatment goals are now containment and symptom management rather than cure. While there are lots of treatments available, I’m told that metastatic breast cancer is something I will deal with for the rest of my life. The expectation is that I will be on a given treatment until the cancer starts growing again, and then I will switch to the next treatment, and so on…. until. Well, until my doctors and I run out of options and I die of breast cancer. (Unless of course, I get hit by a truck first. Cheery thought, eh?)
My physicians say that today metastatic breast cancer is like a chronic disease… like diabetes, and that people can live for years with bone metastases. I want as many of those years as I can get. Good years, preferably. This is encouraging. However, I still need to come to terms with the reality that barring a miracle or new treatment, I will no longer have the life expectancy I was hoping for. This new normal includes ongoing uncertainty. At any time, an ache or pain could evolve into something needing medical attention or requiring us to alter our plans as a family. My health/illness will be a bigger focus from now on.
As a parent, the thought of not being around to love, guide and protect my children is my greatest terror. But then again, the prospect of an uncertain future, living with metastatic cancer and ongoing treatment is also challenging. We don’t know what is coming or when. I want to shelter my family from pain, harm and heartache…. and the fact that I cannot protect them from these things causes me great distress as I struggle to come to terms with and make sense of everything that is going on. However things unfold, my hope is that my children and husband will be resilient (i.e., to bounce back after facing adversity).
That’s where the postcard on the fridge comes in. On it are the nine things you told us in your book that all children need to be resilient:
3. Parent-child connections
4. Lots and lots of strong relationships
5. A powerful identity
6. A sense of control
7. A sense of belonging, spirituality, and life purpose
8. Rights and responsibilities
9. Safety and support
I kept looking at this card right after my diagnosis six months ago. It gave me such a sense of hope. I felt like it was a map, a path for preparing my family. I kept thinking that while I can’t protect my children from pain and loss, there are things I can do to help them be resilient. With my husband, we can continue to provide structure, consequences, safety and support. We can look for ways they can have a sense of control. We can nurture their spirituality, life purpose and belonging within our faith community. I can be attentive, caring and give them my time to strengthen our connections. We can thoughtfully foster each of the resilience building attributes.
They say it takes a village to raise a child. We can build a village for our kids now by helping them develop many strong relationships with caring, trusted family and friends. I can be intentional about spending time visiting, eating together and playing with those who have offered to provide care and support when needed, both now and later. Who are the people nearby who would be able to help in an emergency? If they are already a part of our lives, a future emergency will be less traumatic for my children, me and my husband. My husband and I would have the peace of mind knowing that our kids are well supported, cared for and loved so we can focus on whatever we need to do in the moment.
The more I thought about building a village, I realized that a village is helpful for me as a parent, a caregiver. When the ambulance came for me at 6:30 am a few years back, I was so thankful to have a dear friend that my husband could call to take care of our 18-month old. We knew she was safe, cared for by an “auntie” and we didn’t need to worry. Who would you call? If you are a caregiver, who could step into your shoes at short notice to take care of your loved one? Or to take care of you? Those connections? Well, that’s resilience - and peace of mind.
It sometimes seems like we assume that community just happens. We click with people and “poof” those trusting relationships just form on their own. I don’t know about you, but I think that assumption is as realistic as a house just magically appears without planning or effort. Houses and homes are built. So are communities. We build a village, our community…. one coffee, one conversation at a time. It’s the intentional nurturing of relationships… sharing, listening, spending time together, learning about each other and building trust.
I look back to the card on my fridge and realize that this applies to me - as the patient dealing with illness and uncertainty. I need resilience. Now more than ever. What does metastatic cancer mean for me? How do I make sense of it? How do I spend my potentially limited time, money, energy? How do I reshape my identity now? What sources do I choose to trust, and how do I get the information I need to make medical decisions? What will help me preserve and build my health? What do I do with the things I’ve learned and how do I share them? How do I maintain a sense of structure and “normal”? How do I manage my own responsibilities, and when I can’t, do I let people help and care for me? While there are many things I cannot control, what are those things I can? Will I choose privacy - to isolate myself, or will I chose to share my journey with those who will pray for me and support me? We have chosen prayers over privacy within our immediate community.
Building a village helps me, my husband and my children now… and it gives me a sense of hope for the future. The meals, phone calls, emails, texts, and many cups of tea help me cope. Nurturing my relationships today helps my mental and spiritual health and helps me avoid isolation. I can feel tangible support as I talk through my grief, my confusion, my plans and yes, even my anticipation of good things to come. Supportive friends and family that I can talk openly with also help me provide better care and support for my kids.
Thank you, to my friends and family, for being a part of my village. Thank you for learning with me, for asking questions, exploring and reflecting with me. Thank you for laughing and crying with me and continuing to share your challenges and stories, believing that I am still able to listen and care. It helps to know that I still have contributions to make.
I’m now six months into this journey of living with metastatic cancer, and am doing really well. I feel well and you would never know anything was wrong by looking at me. While I am expected to die of breast cancer at some point, I am not dying now nor anytime soon. I am focusing on optimizing and building my health - the big picture health that encompasses all aspects of my personhood and resilience. I am using everything I’ve learned so far to benefit myself and my family. I am so grateful.
Many blessings and thanks, for your thoughts, prayers, kindness and support. It really makes a difference. Thank you for being a part of my village.
Through you and many others, I am uncommonly blessed.
One Resilient Mom
PS - I am thrilled to share what I have learned and hope this is helpful. Wishing you strength, courage, faith and hope for your journey.