Talking to children about Cancer (or any other terminal illness)

This is a topic that has haunted me since I heard in 2017 that not only did I have breast cancer, but that I’m incurable.  Having a terminal illness puts many things into perspective; however, the diagnosis does not come with a road map.  Rather like parenting … I remember that horrible feeling of astonishment and being overwhelmed when we were permitted to take our newborn baby home from the hospital, knowing nothing!

That feeling of free falling without a parachute or plan has become a bit familiar to my husband and I when it comes to parenting.   We’ve learned to trust our guts, to do research and talk to whomever will talk to us, but then we’ve gotten good at making a decision that seems best for our family and not looking back.  This is a function of how we both do life and it has worked well for us.

So, when we were faced with a terminal diagnosis and the quandary of what to tell and to whom, we have pretty much applied our tried and true method.  At first, we were extremely reticent and didn’t say much to anyone and we’ve worked our way into what works for us.  We’re still refining that process, but here’s a few things we’ve learned along the way about talking to the boys …

  1. Be Honest.  We haven’t hidden from the boys that I’m sick.  We’ve had to talk to them about being gentle and not running away from me since I can’t move very quickly.  The boys know something is going on and we didn’t want to hide things from them. Certainly we haven’t told them everything, but they know enough to know that if I’m having a bad day and I can’t be active with them, it’s not their fault.
  2. Be Genuine.  The boys are aware that I have limitations and I explain them as best I can to them.  After I had leg surgery, I was in a wheelchair, then I used a walker and then a cane.  I couldn’t climb stairs for a while either.  My eldest still talks about how the doctors needed to “fix my run” so that I could play with him.  He understands my limitations in terms of how that affects him, absolutely developmentally normal.
  3. Embrace Fun.  When I knew that I was going to lose my hair, I’d read that it would be best to shave the hair off when my scalp started hurting.  Since all the little hairs were also incredibly annoying as they fell out and got everywhere, it was a relief to get rid of it.  We told the boys that I was going to shave my head and they participated in the exercise.  Both my husband and my dad also shaved their heads.  Since it was hot and my wigs were itchy, I simply went bald.  The boys had a great time rubbing my head and then my stubble as the hair grew back.
  4. Be Open. Every time I go into the hospital and can’t come home for a few days, I know it worries the boys.  They are too young to talk about their fears, so we try to name what we can think of and speak to them.  We particularly like the “feeling buddies” from Conscious Discipline and would encourage anyone wanting to talk to their children about feelings to check it out.

The boys are so young right now that it is hard to imagine having more in depth conversations with them.  We will keep going at this the best way we know how, by researching, being present with the boys, and continuing to explore how best to support them through this amazing life together as a family, even with the storm cloud of a terminal illness hanging over our heads.

An Open Letter to My Eldest, on his 6th Birthday

L, when you came into our lives, you changed everything.  You made me a mom and you have shown me how to look at the world through someone else’s eyes.  You have shown me, most importantly, how to look at myself through someone else’s eyes.  Knowing that you look to your father and I for how to do “life” is both terrifying and amazing in equal parts, at all times.  I know we’ve screwed up and I know that we haven’t known what to do at so many junctures.

Yet, I also know that you know that you are loved.

I know this because I know you sometimes better than I know myself. I have looked into your eyes and watched you assimilate life and experiences your entire life. I have watched how you react and how you do life and how your inner world affects your outer world.

Before you were born and continuing to this very day, your 6th birthday, your father and I have talked about what your future might look like.  We joke a bit about your father deciding that you will attend Harvard for both undergrad and medical school–the point of all that dreaming is that we see your future as unlimited and bright as the sun.  You have so many capabilities and we see so much success in your future; not just academically or professionally, but also because you are an authentic person and you see the best in the people around you.  While we are always happy to hear about how you earn the highest marks in school, what makes us even more ecstatic is to hear about how you are kind and genuine and inclusive and you are yourself, no matter what.

We see how much you love math and how you have amazing visual and spatial awareness.  You have so much natural athletic talent and you love to understand how things work.  Your excitement at discovering new ways to add various numbers or solve word problems astonishes this math deficient momma, but I love that you love it.

Today, and every day, we celebrate you in all your uniqueness and abilities and for the person you are.  We will continue to make mistakes as your parents, but know that we will always love and support you.  You are precious to us, more than you will ever really know until you hold your own firstborn in your arms and your world changes in an instant.

Love Always,

Mom

FOMO

I learned this new acronym recently from a dear friend and fellow metster, Emily Garnett, who has an amazing blog (Beyond the Pink Ribbon) and podcast (The Intersection of Cancer and Life) that all of you should follow if you aren’t already.

FOMO = Fear of Missing Out

I had never really experienced this concept with my kiddos until very recently. When I learned I was pregnant, I was committed to being the best mom I could be.  While the natural birth didn’t happen with either of my kiddos, I threw myself into motherhood with all that I had.  No one who knows me is surprised by this, since I’ve never been able to anything in moderation.  We co-slept, we nursed and nursed and nursed and I pumped and pumped and pumped.  When I was diagnosed with breast cancer, we were tandem nursing and the boys were about to turn 4 and 2.

All of a sudden, everything changed with my parenting and mothering experiences.  I absolutely believe that there is no one right way of parenting or mothering or being a cancer patient, etc.  For me, I had to learn how to be a mother without breastfeeding and being in pain.  Breastfeeding is so much more than food; breastfeeding meant that I could physically address whatever was going on with my boys effectively.  I learned that through trial and error.  Adjusting to being a mother without nursing has been traumatic in so many different ways, but nearly two years after weaning, I can confidently say that I’ve learned new ways of mothering that are just as effective, just not as easy as sticking my breast into my boys’ mouths.

That’s a good picture of how things can change and the structure of a parenting relationship can change, but the underlying foundation is still there and is still strong and resilient.

However.

Each loss and each change brings with it unique trauma and adjustments.

Recently, I experienced another loss in my relationship with the boys.  I’ve dealt with being in pain for a while and sometimes I literally forget that I’m not as able to move well.  It “sounds” weird to say/write, but I do actually have times when I forget and react instinctively.  The recent “loss” that hit me pretty hard is to do with the physical interactions with the boys.

Two examples.

First of all, we took the training wheels off of the boys’ bikes over a recent weekend and they were practicing learning how to balance and ride their bikes without the safety net of the training wheels.  Their bikes are pretty low to the ground and they needed someone to hold on while they were practicing.  I discovered that despite my new found flexibility (thank you regular massages and lots of yoga) and less pain since my steroid shot last fall, that bending down and attempting to move quickly still sends lightening pain through my hips and down my legs.  After I tried a few adjustments that did not make it better, I had to settle for watching, applauding and cheering them on.  That’s important too, I know, but facing the loss of having to sit on the sidelines rather than being in the mix is humbling and sometimes shocking and leads to a fear that I’m lacking in some way.

Secondly, recently my youngest, a fearless three year old with no sense of his own limitations, decided that running out of a gate at the playground that had a road immediately outside of it was a good idea.  I didn’t think, I didn’t look around, I simply reacted.  I took off running at my top speed (not exactly fast) to grab him and ensure that he was out of danger.  Total mama-bear moment–nothing was getting in my way in my quest to ensure his safety.  Spoiler alert, he is fine, doesn’t even remember the incident and I experienced a good deal of extra pain for several days.

I did what I needed to do as a parent, but I’ve paid for it in pain.  Not unfamiliar pain, but pain that interferes with everything else.

I’m very well aware that parenting and mothering changes.  My relationship with the boys is probably stronger now that I spend so much more time with them and am able to focus on them now that I’m not as distracted.  However, I do ruminate on missing out, on not being able to be as physical with two active little boys, and how that makes me feel as a mother.  It sucks, big time.

At the same time, I know I’m a good mother.  I know that my boys are loved and nurtured and they are happy and supported in their authentic selves.  I know this because that is my focus, every single day, and they are surrounded by people who love them fiercely.  I am intentional about my relationship with the boys.  I’m not perfect and I definitely don’t succeed all the time, but I think I’m succeeding more often than not.

Yet …

I still grieve that I miss out on specific activities.

I still grieve that I can’t do what I want to do and that my kids want me to do.

I still grieve that terminal cancer has affected my relationship with my children.

I still grieve that my body doesn’t work the way I want it to.

I still grieve that I pay for movement later.

I still grieve that I have to plan so much more to be able to go to activities that I want to attend because I only have so much energy and only so many spoons available (check out the spoon theory of chronic pain if you haven’t heard of it before: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/).

Life can be frustrating and hard and excruciating and beautiful and amazing all at once.  Every day, I make myself get up and connect with my kids and EMBRACE all that we have together.  I still have some FOMO, but for my kids to remember me, I have to be in their lives now.  That’s what I’m going to keep doing for as long as I can.

Creating Lasting Memories

Ever since I knew that I have a terminal illness, I’ve been much more intentional about creating lasting memories with my boys.  They are currently five (5) and three (3), so I am quite well aware that their actual memories of me may not be all that vivid if my life expectancy follows the median of those with my disease (2-3 years is the median life expectancy).  One of the major ways I make sure that I will be visible in my boys’ memories is to take a lot of pictures.

Life isn’t perfect and I am often not happy about the way that I look in the pictures.  That used to mean that I didn’t post pictures or even take them and when I did, I’d carefully ensure that only the best were displayed.  Now, I take pictures all the time and I post and share pictures quite a bit.  I’m not at all narcissistic, I am intentionally making a record of the time that I have with my boys for them, for their future.  They will be able to look back and see all of the times we’ve had together.

When my dear friend, Jennifer Pace, posted information about an up and coming non-profit that schedules photo sessions for those of us with metastatic breast cancer, I jumped at the opportunity.  The photo session was nothing less than amazing and the pictures that came out of it are priceless.

I’ll post more on Facebook and all of the pictures, but I’ve tagged one of my favorites in this blog post.  Check out Joe Leone Photography and like 13th Hour on social media.  Joe and his sweet wife are traveling around Florida capturing poignant memories that cannot be replaced.