Father’s Day, 2020

Father’s Day is celebrated in the United States on the third Sunday in June and was started in the early 1900s in various areas of the US, mostly by children who sought to honor their single fathers and make sure that both Father’s and Mother’s have a special day just for them. While Mother’s Day was officially celebrated first, Father’s Day was not long behind for formal recognition and was soon expanded to acknowledge all of the men serving as father figures for people not their biological children.

Both my Dad and my husband have birthdays close to Father’s Day; in fact, for my husband’s very first Father’s Day in 2013, his birthday was the same day as Father’s Day and our eldest’s baptism. And yet, the struggles I’ve always had with my birthday being so close to Christmas don’t seem to translate as much to the men in our family. Maybe because both Father’s Day and Mother’s Day is still mostly about the kiddos and their celebration of fathers, maybe because they are both much more mature than I am. Maybe it’s because there is pressure on men to be the strong, silent types, to deal with their emotions in private. Whatever it is, Father’s Day is an excellent excuse to roast these important men in my life.

First, my Dad, Thomas Richard Schroeder, JR., LMHC:

My Dad has always occupied a larger than life role in my life. I am the eldest in our family and my name means “A Father’s Source of Joy.” While my dad and I have clashed over virtually everything in life at one point or another, our relationship has largely been marked with respect, loyalty, and a huge dash of honesty. Our personalities are similar in many ways yet vastly different in others. Some of the most fun I’ve ever had with my dad was when we were trained to do collaborative divorces together and we worked with families together. Our approaches were different, but complimentary. Dad doesn’t get as much acknowledgment in our family for what he brings, which is a whole lot of foundational strength, commitment, loyalty, and love. He has taken what he was given and made our lives better than what he had and he’s done it without being asked for as long as he’s been a husband and a father. Despite whatever is going on in each of our lives, we all know that Dad will answer the phone to brainstorm and discuss potential solutions and then make them happen when he can.

During my bridal photoshoot before my wedding in 2008.
Wedding on August 9, 2008

When I was diagnosed with Stage IV Metastatic Breast Cancer, my dad was the first one to suggest that we consider moving to Miami to live with him and my mother. In 2017, I’d been living away from home for nearly twenty-five (25) years and moving home with a husband, two children, a cat, and decades of accumulated belongings is a much bigger deal than other times in my life. And yet, despite the upheaval and changes and obliteration of their retirement plans, my parents made room for us, literally and figuratively. And more than that, my parents have taken on my causes as their own. Dad and I moderate a support group for patients with Stage IV metastatic breast cancer every other Monday and he’s recently donated his 65th birthday to raise funds for a local non-profit, the 305PinkPack. If you are interested in joining his efforts, you can donate here.

That larger than life man I’ve been looking up to my whole life, turns out he’s a pretty cool guy to know as a person too. Despite all the challenges we’ve faced as a family with my diagnosis and life, I am grateful that part of the adjustments we’ve made is to be closer to my dad and have the opportunity to see and know each other in a different way. One thing you learn very quickly being terminal is not to let time go by without saying what you feel to those in your life.

So, Dad, thank you; thank you for being you; for giving selflessly of yourself day in and day out; for getting up every day to go to work; for continuing to work on yourself and admit your blind spots; for worrying about each of us all the time; and for being there every single time we’ve needed something even before we know to ask. You are seen, you are loved and you are appreciated, each and every day.

Happy Father’s Day, Dad, today and every day. 🙂

Disney Cruise for Spring Break in 2018.

And now, for my husband, Elliot Lawson Johnston:

When I met Elliot in 2006, having children was a far off twinkle in his eye. Despite the fact that he would have been fine to immediately begin having children when we got married in 2008, I was more reticent. Once we thought we might be ready and started to try to have children, things didn’t go as planned. We discussed all the options, prioritized our research, and tackled fertility treatments together.

And that’s really the way we tackle life, together. When I had to give myself shots and take hormonal medication and go to appointments daily at various points in my fertility cycle as part of the medical interventions, Elliot was there every step of the way. He was the first to celebrate with me as the treatments worked, twice, and he was the first to hold both of our boys after the C-sections that brought them into the world. Elliot put up with my insistence on trying a VBAC for our second son and didn’t chastise me, much, for not always making the best decisions as I struggled to figure out how pregnancy and motherhood fit into our lives.

One of the most beautiful things about being a parent is watching other people fall in love with your children. Just because Elliot didn’t carry our boys inside his body for 9 (nine) months doesn’t mean he wasn’t falling in love just as I was. He helped me physically during my pregnancy and rubbed my stinky feet nightly for months. As soon as our boys were born, he jumped right in, changing the first diapers for both of them and continuing to be part of everything, even as breastfeeding took over our house and my time.

Mere days after L was born, Elliot with our first born.
Getting in some snuggles with L on his baptism, which was also Elliot’s 40th birthday and his first Father’s Day!
We knew a little more with #2 and had a newborn photoshoot at home a few days after M was born. Elliot jumped into fatherhood for the second time with both feet!
The dreaded tummy time was better on Daddy’s chest for M!

Watching Elliot grow and learn as a father and a husband over the past year has been one of the best experiences of our marriage for me. Life is so very different now, from COVID to progressions, and working from home and watching school happen in the same room with varying amounts of success. Elliot has shown us over and over that he is committed and loyal to his family. Elliot has demonstrated in so many ways that he can be trusted, that he is a foundational part of our family, and he follows through when he says he will. Beyond that steadying hand, Elliot is also much better than I at diffusing a situation with a joke, a smile, a tickle, or just a hug when someone needs it the most. The boys are beyond blessed to have Elliot as their role model on how to be a black man, a husband, a hard worker, a nurturing masculine man, a steady and consistent provider, and a father they can respect, emulate, have fun with, and follow.

Couldn’t imagine life without you, my love. Happy Father’s Day!!

Dinner at our favorite social distancing restaurant, The Melting Pot, to celebrate both Elliot’s birthday and Father’s Day, 2020!

Fathers and Sons, Mothers and Daughters

In this time of COVID-19, I’ve had the chance to watch new shows on Netflix and rewatch favorites I’ve already watched. One such series that I spent time rewatching recently was Game of Thrones (GOT). Much of the hype around GOT happened while I was busy juggling motherhood and a busy law practice, so I wasn’t paying very close attention. Now, I can. As an aside, I read the books some years ago and the books are still by far my favorites over the show. But, I digress …

One of the themes I’ve noticed coming through loud and clear in GOT are all the examples of how parents affect their children, good and bad. In the overwhelmingly patriarchal society depicted in the show, it at first seems that fathers have the most affect on their children, but as I watched closer, the role of mothers and mother figures, while more subtle, can often be even more important, especially when it is absent. And that influence is absent a lot, seemingly more often than not.

While I do realize that GOT is a fantasy, one of the marks of the genius of the author is that the characters closely mirror real life in many ways. The role of the parent in shaping the outer and inner world of their children has been a consistent theme in my life and one I’ve seen in others around me, particularly my five (5) siblings and my husband. It’s also something my husband and I talk about regularly in relation to our two (2) boys. Knowing that my role in their lives may be much shorter than we hope has created an increased desire to understand and be intentional about my mark on their lives before my death affects them.

One book I read last year was The Blessing by Gary Smalley and John Trent. The Blessing explains the five (5) elements of a traditional blessing rooted in the culture and teachings of the Old Testament. In the Jewish culture described in the Old Testament, suggests the author, these elements were an important and well-understood part of family life. It reminds me of the formal and measured way the Ned Stark character in GOT relates to his children, a theme that is seen clearly through the entire show, long after he lost his head. I’ve done my best to incorporate some of these elements in my relationship with my boys and in the letters I’m writing to leave behind for them to open.

The five elements of the blessing described by Smalley and Trent are:

  1. meaningful touch
  2. a spoken message of love and acceptance
  3. attaching “high value” to the person being blessed
  4. picturing a special future for that person
  5. an active commitment to fulfill the blessing

I’m not a touch-feely person generally and typically keep my hands to myself; however, I’ve noticed that I instinctively practice meaningful touch with my boys and also random other children. Before you start thinking bad thoughts (you know you were going there), I’m talking about a gentle touch on the head or the shoulder or arm to show love or approval or celebration. I’ve also found that getting someone’s attention with a gentle touch is much preferable than shouting when possible. Living in this strange time of COVID and touching restrictions has reminded me how important a meaningful touch can be, especially with children.

I also struggle at times with the spoken message. I’m an introvert and my internal world is my safe place. Taking the time and focusing on remembering to speak messages of love and acceptance has been a discipline that I’ve had to learn over time. I’ve noticed that after I’ve spent some time writing messages of love and acceptance for my boys to have later, the words come easier to me. We still co-sleep with the boys, so those precious moments of snuggling and whispering right before bed are the perfect time to remind them how much they are loved.

These steps can be applied to any relationship, not just the ones between parents and children; at the same time, I do think that they are at their most powerful in a mentoring or parenting or caretaking relationship. It is the person who is older and wiser who the mentee or child is looking to for approval and these steps provide a powerful road map to be able to do so.

Whatever the specifics, the powerful role of Fathers in relation to their sons along with their daughters and Mothers in relation to their daughters and, of course, their sons, cannot be overstated. It is an awe-inspiring position and one that should be undertaken with careful thought and measured action.

Junior Achievement

From JuniorAchievement.org, the role of the Junior Achievement program is as follows:

“JA’s volunteer-delivered, kindergarten-12th grade programs foster work-readiness, entrepreneurshipand financial literacy skills,and use experiential learning to inspire students to dream big and reach their potential.”

On May 13, 2019, my husband and I led our son’s kindergarten class in the set of lessons entitled “Ourselves” designed to accomplish the following goals:

  1. Practice personal economics by considering choices.
  2. Explain the difference between needs and wants.
  3. Understand the concept of money, particularly earning and saving.
  4. Identify the importance of giving to a worthy cause.

These are pretty lofty goals for 5 and 6 year olds to comprehend and yet each of them were and are attainable. The curriculum broke down the concepts into developmental appropriate pieces and included activities and games that drove the points home. We enjoyed working with the kiddos and several other parents to accomplish this important first step.

Next year, the first graders will get the next set of principles. The curriculum is designed to stand alone each year and to build on the previous year. It’s oh so necessary in this day and age for our kiddos to know, understand and practice good habits when it comes to money and understanding the roles of our economy.

I wish we could have had this program when I was in school! If anyone doesn’t have this incredible FREE program in your school, go to the website and check out your local office.

On the Night Before School Starts, 2019

My boys go back to school tomorrow, returning to the same elementary school they attended last school year. My eldest, he’s 6, is in first grade. He will be, for the first time, in a gifted classroom. My younger son, he’s 4, returns as a role model in the LEAP classroom at the same elementary school. My younger son has the same teacher but my older son will have a new teacher.

When I was a kid, since we were homeschooled, there was not as much of a build up. We spent all day at home during the summer too, outside of other activities, so not as much changed when we started the new school year. By high school and beyond, the start of school was more about the new work to me and was less about excitement.

I do have to note my obsession for and love of school supplies. The smell of freshly sharpened pencils, clean new notebooks, flags, highlighters …. I’ve been doing better with my hoarding tendencies since we have smaller space, but it’s so easy to justify expenses when they can be used all year. 😉

Watching the boys get ready for school and assisting as part of the PTA on the teacher/adult side, is a really fun new experience. Their excitement to see friends and to get back into a familiar routine is contagious. The adults are also looking forward to the kiddos having a routine as well.

We did a pretty good job, I think, of keeping them busy and also keeping them interested all summer. They did swim camp, science camp and rounded out the summer at Zaniac’s, the elder in Minecraft camp, which he said he would now like to attend year round, and beginning coding for the little guy–by the end of the week, he was doing pretty amazing things.

I have so many hopes and dreams for these boys and for this school year. We love their school and the community we’ve found there. We love the friends the boys have made and the families that we have connected with.

It’s gonna be a spectacular school year!!

Twas the Night Before School Started

Twas the night before school started
when all through the town
the parents were cheering
it was a riotous sound.

By eight the kids were washed
and tucked into bed
when memories of homework
filled them with dread.

New pencils, new folders, new notebooks too,
new teachers, new friends, the anxiety grew.
The parents just giggled when they heard of this fright
and shouted upstairs-GO TO BED-IT’S A SCHOOL NIGHT! 

 Author: unknown

Dealing with Prejudice/Racism PART I

I know this blog is about my experiences as a woman living with Stage IV metastatic breast cancer, but I need to take a small break and talk about prejudice and racism.

As most of you know, I’m a WASP. I’m originally from the Midwest but I am a White Anglo Saxon Protestant. I’m married to a dark skinned naturalized citizen from Jamaica and our boys are a beautiful brown mix of the two of us.

Hey, I know I’m biased, but just look at how amazing they are!!

I’m still learning about how to deal with racism, whether overt or covert. News Flash, I’m not dealing very well with it. When my husband and my kids are treated differently, it boils my blood like nothing else. Nothing.

Recently, we’ve encountered an issue in our neighborhood. Specifically with the use of the tennis courts in our neighborhood. Ridiculous, right? How could tennis courts result in racism?

My children have been taking tennis lessons for nearly 2 years now from an amazing tennis coach that comes to our neighborhood. She is truly a gifted teacher and my boys love her. We share the time with several other families in our neighborhood. The coach is super nice, respectful, etc. She has never caused any problems and has never been late.

Fast forward to last weekend when an adult white man thought he should have the tennis court and my husband, children and our coach should leave. There are no rules in our neighborhood that would allow one resident to force another to leave a common area yet this man thought he could bully them because he wanted to play instead of the children. He pretended to serve the tennis ball into my husband’s face and kept yelling “Where are you from?” to my husband and our coach.

This happened in front of my boys.

They are 6 and 4.

They watched this horrible man belittle and be disrespectful to their father and coach.

My husband handled the situation beautifully, respectfully communicating that he would not be bullied or pushed around. He did leave the tennis court that day because the man was so awful and the boys were present and there is a second court. When my parents attempted to talk to the man, he calmed down. He apologized to my tall white father while ignoring my mother.

When we filed a formal complaint with the homeowners association and suggested remedies for the situation, we learned that this man is a known bully. He is a known racist. He is known to be extremely negative towards immigrants. He is known to use his whiteness and his height to intimidate others into giving him what he wants.

It is known.

And yet, his behavior doesn’t stop.

He has no idea what can of worms he just opened when he behaved this way towards my husband and my kids. If he needs to know where I’m from, I’m happy to tell him I arrived in Florida from Ohio by way of law school in Virginia. I suspect that’s not what he wanted to know.

It is 2019. The idea that any person is better than another because of their gender or skin color or height or nationality whatever is not only outdated, it is criminal. No one should tolerate this behavior and yet the lack of people standing up to bullies and racists and misogynists is astonishing.

The ONLY way for men like this to win and get what they want by being horrible is when the targets don’t back down and neither does the community.

You’ve been warned, you racists and misogynists, you don’t get to mess with my family without consequences.

Memory Boxes (originally published in Wildfire Magazine)

If you don’t already subscribe to Wildfire Magazine, go sign up now!!  It’s amazing and you will get content from a wide variety of talented men and women.

When my boys were placed in my arms after the planned (Liam in 2013) and emergency c-sections (Malcolm in 2015) my heart swelled and grew.  I had no idea how much love I could have for someone I’d just met and yet, it happened both times.  Ever since then, I’ve had the privilege of thinking about them before anything else and putting them before myself every day.

So, when I heard in March of 2017 that I had breast cancer in the midst of tandem nursing my boys, while I mourned at having to wean them abruptly, I knew that I had to in order to stay with them.  When I heard in June of 2017 that I was actually Stage IV and my breast cancer had metastasized to all of my bones, my very first thought was that I wanted to be with them as long as possible.  The years I’d had with them was suddenly not enough and every moment became fraught with meaning.

Since that fateful day in June, I’ve had almost two years to be with my Boys and work through so many emotions and fear and anticipation.  Anticipation of all those days and experiences they will have without me.  I watch my own mother help me with caring for them and my heart breaks for all that I will miss.  When I can bear that thought again, I’ve tried to turn my attention towards pieces of me that I can leave behind for them.

This is my list thus far …

  1. I take lots of pictures of me and the boys.  Yes, this means I take a lot of selfies and I don’t always like how I look in the pictures.  I also schedule photo shoots whenever I can for holidays and just because.  Capturing how happy my kiddos are is amazingly gratifying.   I’ve also back up the pictures in about 5 different ways just in case.
  2. I found an amazing non profit who helped me create a video for my Boys.   The non profit is Thru My Eyes.  It’s out of New York but the process of making the video was so very special and I know that my boys will treasure it. There are several non profits that do this and I think it is extremely important to leave all kinds of difference types of memories behind.
  3. I found a company that makes bears out of old clothes.  Each of my boys has a bear made out of clothes I memorialized in pictures with them and I recorded a special song I sing to them so that they can hear my voice whenever they want.  I can barely carry a tune but they don’t know that, they just love to sing with mommy.
  4. I ordered memory boxes for my Boys and my husband and I’m slowly filling them up with keepsakes and letters and books.  Books that I hope may help as they begin life without me.
  5. I started writing letters to my boys on their birthdays when they were born.  I’ve now expanded that project to write them letters for important birthdays, their weddings, graduation, etc.  It can be slow writing these since it’s hard to think of everything I’d want to say to them but I keep at it.
  6. I found a variety of cards for a variety of experiences and circumstances and am slowly making sure they have those to open.
  7. With my parent’s help, I’m trying to memorialize all of the traditions and meaning behind each of the family items my boys and nieces will get when I pass.
  8. We moved from Orlando to Miami to live with my parents.  My sister moved from New York to Miami to be with me and my boys.  I am intentionally surrounding them with people (especially women) who know and look/sound like me.  Women who will be able to help them remember me but also won’t let them want for love and nurturing.
  9. I’ve planned my funeral and we’re in the process of paying for it and ensuring that my family will only have to show up to celebrate my life.

Each of these things I’ve listed above are how I am trying to prepare for leaving my Boys.  I’m already experienced two thirds of the median survival time with them and while I hope for many more years, I also cannot help but prepare for the worst, that I only have another year or two with them.  I don’t know precisely how to cram a lifetime of my presence with them into that time but I am working to make sure that my voice will be available to them in good times and in bad times.

The hardest thing about my diagnosis and knowing that I am terminal, is knowing that I will hurt my Boys in the most profound way a mother can ever hurt a child, by leaving them.  My own memories only go back so far and there are days when I look at my 3 year old and wonder if he will remember me at all.   If I dwell on that, it’s hard to do anything at all.  By focusing on what I can do, now, I can keep working at what I can do to mitigate the loss.

I would be remiss if I end without mentioning my precious husband.  He has uprooted his life and work and comfort zone to support me in what I want and need.  His selflessness has allowed me to structure a new life that is supportive and helpful to me as I navigate our new normal.  He is an amazing father and I know that he will do everything he can to make sure our boys grow up to be men and to make sure they don’t forget.

I cannot end this post without mentioning April Stearns and her wonderful magazine, Wildfire.  She is an ally to us living with stage IV metastatic breast cancer and her publications highlights and celebrates the amazing men and women who have not allowed this disease to end what is special about them.  Check her out!

How to be an Ally

When I met my now husband, Elliot, in 2006, I’d never dated anyone who wasn’t as lily-white as me.  In fact, the area where I went to high school in Ohio was so homogeneous, that going to UCF (That’s the University of Central Florida for those of you not familiar with the Knights) for college was a HUGE adjustment in so many ways, but especially because of the diversity.  Meeting someone new, whether a romantic or other relationship, and learning to adjust to their idiosyncrasies is complicated enough, but throw in different skin tone and cultures and that can get messy super fast.

I’m not going to suggest that Elliot and I have it figured out or we (really, I) haven’t made mistakes over the years; however, after nearly 11 years of marriage (as of 2019 when I’m writing this) and knowing each other even longer, we’ve found a stable normal, mostly.  Elliot still reminds me at times when my white privilege is peeking through and parenting has been more complicated since not only are our boys a different gender than I, they also are experiencing some different things since they are much browner than I am as well.

What I have learned, as the white wife of a mixed and dark skinned Jamaican husband and the mother of two mixed race boys, is that I can say things they can’t say.  Elliot can say things I can’t say.  We’ve learned to be strategic and we’ve learned to play off each other’s strengths.  For instance, I’m pretty much a bull in a china shop at times, especially when something has happened with my kiddos; the gloves come off and I’m talking about lawsuits and asking for insurance documentation.  Elliot is super diplomatic and has the advantage of being able to interact with people he doesn’t particularly like without them knowing his true feelings.  If I don’t care for someone, they know it, the whole world knows it.  I honestly never learned to control my face.  And now I have no filter.  At all.

So, what’s the point of this?

I’ve learned a little bit about how to be an ally.

I’ve learned that there are times that I need to keep my mouth shut.

I’ve learned that I have to stand up for my kiddos in a different way.

I’ve learned that there are times I HAVE to speak up.

I’ve learned that if someone is behaving in a racist way, then I’m the one who has to call a spade a spade.

Why?  Because I’m white.  And white privilege is a real thing.  It sucks, but its real.

The thing with white privilege is that we white people don’t know and can’t really imagine the experiences of someone who is not white. Elliot explains things to me regularly and sometimes I’m completely flabbergasted, it’s 2019!!  I’ve certainly been discriminated against based on gender and treated differently than men, especially in the legal profession.  That is a good analogous experience, but it’s also not completely transferable.

What I am is loyal.  When I see my husband or, God forbid, my boys being treated differently in a negative way, that hurts my heart and bruises my soul.  Hell hath no fury like a lawyer whose loved ones have been discriminated against.  Seriously.  You mess with my people, you got issues com’n your way and I’m pretty good at using the legal system when I need to.

To me, when you love someone, then their hurt is your hurt.  I’ve not heard of a good metaphor for what animal one becomes if a spouse is attacked, but I have no problem bringing out the mama bear persona when my kiddos are attacked.  I’ll have to think of what animal it would be when my husband is treated badly–he can take care of himself and does so admirably; however, he knows I have his back and he has mine.  Sometimes that means backing down and withdrawing, sometimes that means a confrontation. I’m sure none of you can figure out which one is my preference.

I share all of this to set up what I really want to talk about.  I share all of this to explain how I’ve lived a large part of my adult life learning how to be an ally to someone whose experiences are diametrically different than mine.  I’ve also worked in the legal field advocating for foster children for nearly 20 years and most of those clients were minorities and many of those kiddos were on the spectrum. It’s been a long road and I certainly don’t have everything figured out, but I’ve picked up a few things.

While race is not the perfect analogy, there is a similar divide in the breast cancer community between those with early stage breast cancer and those of us in the terminal “club” with Stage IV metastatic breast cancer.  When I wrote a blog in late 2018 about that divide and my actual real life experiences of literal discrimination, that struck a chord with so many (it’s actually been accessed over 7000 times from 20 different countries!!) and now I can share my own blog post when I see it happening.  It’s a nice shorthand rather than having to explain it all again.

The point of all of this is this … if you want to be an ally to any community, you don’t get to dictate the terms of how that works or what that looks like. Being an ally does not mean that you tell someone else how you will be supporting them.  You ask or otherwise figure out what the community you are trying to support actually needs/wants. Being an ally also does not mean that you place your experiences on the same level as another person’s unless it actually is on the same level.

I know this from my own experiences, I tried to tell my husband early on how things should work, how we should work together, how I would “help” as an ally. He’s much more polite than I am and I realize he was so very kind to me in my earliest efforts.  I know he knew that my angst over how he was treated came from a good place and he’s such a kind man that he tolerates my craziness.  I get the side eye from him a lot and I’m better at reading him wanting me to back off, but I still go off on my own soap box probably too often.  I’m lucky and blessed and all of those good adverbs to describe Elliot’s place in my life.

I’ve not been as kind to people who have attempted to tell me how they would be my ally on their own terms.  I’ve not been as kind to the woman who tried to tell me that she had the cure for my scanxiety because she had cured hers when dealing with endometriosis.  I don’t do subtlety well.  Frankly, I have no use for vision boards or cognitive behavioral therapy or any other method that teaches someone to overlook reality and pretend everything is different than it is.

I live in the real world where the scans I have done tell me how long I’m going to likely live.  That is anxiety or scanxiety on a different level, on a terminal level.

Sometimes I wish I could invite others to live inside my head, inside my life, inside my experiences for a minute, an hour, a day.  That would be so much easier than trying to explain.  I struggle to put words sometimes together to explain, I reach for metaphors that have their own issues.

So, I’m writing this blog post to be able to share with others when this happens again, because it happen so depressingly often. 

Here are my top 10 ways to be an ally to the stage IV metastatic breast cancer community when you are not Stage IV, in no particular order:

  1. Ask us what we want to be called, if there is a label that resonates with us.
  2. If we tell you what we want to be called, use that term and not anything else.
  3. Hold space for us when we are having a tough time.
  4. P.S. Holding space means not telling us what to do.
  5. Ask us if we want to hear suggestions for remedies for whatever it is we’re dealing with.  If we say no, THEN DON’T SAY ANYTHING.
  6. Don’t give medical advice if you are not a medical professional.  That’s called practicing medicine without a license and it infuriates me just as much as people who try to practice law without a license.  There are also criminal and financial sanctions for that.  Don’t test me, I will report people and have.
  7. Ask us if we’re in a place where hearing about a different remedy that worked for you would be helpful.  If we say no, THEN DON’T SAY ANYTHING. Yes, this is listed twice. That’s not a mistake. This is a BIG DEAL.
  8. On the flip side, saying something is better than saying nothing.  Saying you don’t know what to say is better than saying nothing. Saying you have something you want to say when the time is right is better than nothing. Showing up is key.
  9. If you are selling something, ask before you start sending information about whatever product you think is a miracle.  Seriously, don’t send me info on the miracle product that you don’t know the ingredients to and if I say no, STOP SENDING IT.  I don’t want to join your team and I sure as hell won’t spend my disability money on something without my doctor’s advice.
  10. Save the meme I included above–toxic positivity DOESN’T WORK.  It’s rude and demeaning and elitist and arrogant and awful and infuriating and hurtful and mean.

I obviously feel strongly about this.  I want allies.  We metsters need allies.  The median life expectancy of us stage IV lifers is 2-3 years.  That means we die, quickly.  We need people who don’t have cancer, who are cancer free, who have early stage cancer, who know someone diagnosed, really everyone, to fight with us.  Make no mistake, we are in a battle to fund sufficient research to give us options until a cure is found. We all need to work together to make a difference for us.

Be an ally.

Ask me how.

 

Mother’s Day 2019

May, 2019 is the third Mother’s Day I will celebrate with cancer. It’s only the second Mother’s Day I will celebrate since knowing that I was de novo metastatic (meaning from the beginning) since it took a few months to figure that out after the initial bombshell in March, 2017.

Every holiday since cancer, especially metastatic breast cancer, takes on a new significance. Every time, I can’t help but wonder whether this is the last of whatever holiday it is that I will celebrate. Every time, I go a little more overboard in celebrating just in case it really is the last time. Every time, I have to consciously look away from the storm clouds gathering overhead, especially when a scan or other treatment is coming up.

As a daughter, I hope the celebrations and gifts for my mom have gotten better over the years. My mom is pretty forgiving and accepting of our efforts over the years, even the misguided ones. It makes my heart smile a little seeing how she has kept a variety of the trinkets and projects I made over the years for her. One of our most memorable mother’s days, for me, was driving together (just my mom and me) from Virginia to Florida after I graduated from law school. Being one of six means that we all rarely got our mother’s undivided attention. Her attention was and is priceless and coveted. Being the eldest means I still have 18 months of her undivided attention more than any of my siblings.

A few mother’s days stick out for me since becoming a mother myself. My first Mother’s Day as a new mom in 2013 when j finally got to celebrate as a mom. My first as a mother of two when we came home from the hospital on Mother’s Day in 2015 and I tandem nursed my boys for the first time, marveling at how HUGE my 2 year old eldest looked compared to his newborn brother. The very first gift I received on Mother’s Day that my son made for me at school, which I display proudly on my piano to this day. Since Mother’s Day happens during the school year, there are usually celebrations and trinkets and fun activities with the kiddos.

Each of these celebrations were and are a salve to the wound of watching other women celebrate Mother’s Day when I ached to hold a child in my arms. Each of these celebrations remind me how lucky I am to have an amazing role model in my own mom.

The older I get, the closer I get to the end of my life, the more I treasure time. Time to be with those that I love. Time to celebrate milestones and time to impart important lessons I’ve learned.

This Mother’s Day and every day, I am reminded to be grateful for the mothering I’ve received, grateful to be gifted the opportunity to be a mother to my boys and the awe-Inspiring responsibility it is to be a mother. I’m also reminded of those mother’s days when I longed to be a mom and my heart hurts for those families that feel incomplete.

Today, and every day, thank those people in your life who show love, who nurture without thoughts of reciprocation and who make life and love beautiful. Those people don’t have to be moms, dads are pretty good at nurturing too, as are Aunts and Grandmas and people who give freely of themselves. After all, Mother’s Day is just a made up holiday anyway. 😉

An open letter to my youngest on his 4th birthday

M, when you came into the world, it wasn’t as I’d planned.  Yes, I’m a planner, and I so wanted your birth to be idyllic and empowering and lovely and calm. 

You had other plans. 

After 26 hours of labor (with quite a few unmedicated hours of back labor because you decided to turn around) and an emergency C-Section, since the cord was wrapped around your neck and arm, you were whisked away to the NICU for some time to ensure that you were ok.  Thank God you were, but little did we know that your momentous entry into the world was simply a foreshadowing of the person that you are.

You are amazing.

You are confident.

You are a force to be reckoned with.

You know no boundaries.

You view an obstacle as simply something to be conquered.

You hear no as an opportunity to try something new.

You jump in with both feet, literally.

You run headlong into new situations, new people, new adventures.

I forget sometimes that you are still little and are now just four (4) years old.  We’ve worked hard not to compare you with your older brother, especially because we know how much you look up to him and want to be like him.  You are your own person, delightfully unique and wonderfully gifted.  There are no boring moments with you around and you are quite well aware that a cute look or hugs or kisses can often soften the upset adult when you’ve done something extra dangerous.

You are entirely extra. Extra boisterous; extra loving; extra adventurous; extra loyal; extra perfect for us, your family.

We can’t wait to see what you will accomplish with your life.  It will be stupendous, it will be awe-inspiring, it will likely be full of risk, and it will be all you.  You can do whatever you have decided to do and your Dad, brother and I will be there to cheer you on every step of the way.

Happy 4th Birthday to the amazing little boy who completed our family.

Love Always,

Mom

xoxo

Fertility, Infertility and Secondary Infertility

This is a topic fraught with so many sensitive issues and let me say up front that I am not an expert on any of it. What I am is a woman, a daughter, a wife, and a mom.

Some background on me … I delayed having children on purpose because I wanted to build my career and to spend quality time with my husband. When we got married in 2008, we were both out of our 20s; well, I turned 30 a few months after we got married. When we were ready to conceive and I stopped taking birth control, we thought it would happen quickly. It didn’t. So, we went down the road of testing and monitoring my fertility closely. I quickly grew to resent the charts and forced timed intercourse that only highlighted my continued failures.

Still, no pregnancy.

We then went to a fertility specialist and went down the road of medication; fortunately, just the oral kind. It took time and there were lots of delays, many times we got our hopes up only to be disappointed, and there were many many pregnancy tests. Going every day for a vaginal ultrasound around the time of fertility was super difficult to work into my schedule and wasn’t fun.

Then, yes, we got pregnant and our eldest boy was born in 2013. Once we decided that we wanted to give him a sibling, it was back through the fertility rollercoaster once again. Different this time was that I was nursing and refused to wean just to get pregnant. (I was a difficult patient long before I got cancer!). This time, because I was nursing, I had to give myself daily shots. After months of trying and lots of shots, we were finally able to get pregnant again and our youngest son was born in 2015.

Our two boys are exceedingly precious to us, even more so because of all the effort and time and angst to get pregnant. Nursing was even more important to me because it felt like it made up for my body not doing what it was told.

Fertility was the first time my body failed to do what was supposed to be natural and normal. Finding out that I have Stage IV metastatic breast cancer was the second time my body failed me.

When we met with my breast surgeon so that she could give me the results of the breast biopsy and tell me I had breast cancer, she asked us about fertility and what our family plans were. We didn’t know how blessed we were that she was up front and discussed our options with us directly and candidly at the very beginning. Since we’d been on the fence about the possibility of a third child, the diagnosis gave us a pretty clear and definitive answer about that. At the time, it didn’t seem like another loss, but it was.

No, my experience was not to be told I would never be a mother.

No, no information was withheld from me so that it was too late to preserve my fertility.

Yes, I have two amazing little boys who I was able to carry to term.

No, I’ve not had to suffer the loss of a child through miscarriage.

And yet, the end of the possibility of my body nourishing another child was a major blow. Immediately, the largest change was that I had to immediately wean both of my boys. We’d been nursing for 4 years, the last two years as a tandem threesome. Nursing was literally inextricably intertwined with how I mothered my children and the adjustment was devastating. Since nursing was how both of my boys drifted off to sleep each and every night of their lives, bedtime was torturous as we adjusted to weaning and the fact that I had cancer all at once.

I think the devastation of learning I have a terminal diagnosis along with the devastation of weaning masked the sadness of learning that there wouldn’t be another child of my body who shared the traits of both my husband and I. Once some of the shock wore off, I was able to feel some of that loss.

Fertility, infertility and secondary infertility are becoming less of a taboo subject over time. Women are speaking up more and more about the toll these losses take and how silence about these losses only makes them worse. So much worse. I’m not sure we ever really get over these losses and having to hide how hard it can be is probably the worst way to handle it.

Being given a terminal diagnosis means that I’ve had to grieve the loss of so many things. Even things that I didn’t really even realize that I wanted. We have to continue talking about loss, talking about grief, talking about how dealing with these things can affect all of us. Only when we get things out in the open to be able to examine them, grieve them properly and then put the loss in the appropriate context can we move forward with the grief. No one truly moves past grief, it just becomes a part of us in a more manageable way.

For now, I will focus on the amazing gifts I’ve been given, EMBRACE the reality of the here and now, and offer support when I can to those who are still grieving. When women support other women, truly amazing things happen.