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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. 😉

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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.

An Open Letter to my Husband on his Birthday

I vividly remember the day we met at the Panera in Waterford Lakes. I was so nervous that I think I talked the entire first date and I don’t remember all of the likely nonsense that I spewed the entire time. Yet, you overlooked that as you overlook so many things. You saw through the babbling idiot I was that night and I’m so thankful for that.

The last nearly 11 years of marriage and a few more of knowing you through being engaged and getting to know each other have been intense and fraught with challenges. At the same time, knowing that we each have a partner in handling job loss, infertility, buying, selling and renting houses, family challenges, children, surgeries, health issues, family health issues and all of the other awe inspiring experiences that have happened to us, can often make the difference between a breakdown and a breakthrough.

Just writing the list of all the things we have weathered in our relationship reminds me how lucky I am to have a real partner in all of that. I’ve never felt like I was facing any of our challenges alone. When we’ve needed to make changes, to adjust, to pivot, you are always in the thick of it, always joining me in whatever we have to do. Nothing can be a better example than your choice to leave Orlando with me and the boys and live with my parents after I was diagnosed. You put me and our marriage above yourself and your comfort, something you do naturally and regularly.

As I shared during my toast at Anna’s wedding, you showed me in the biggest and best way that you love me. Ours is not the love story of grand gestures and high peaks and correspondingly low valleys. Our love story is quiet, steady, consistent, loyal, true, trustworthy. Our love story is like us.

Two years ago on your birthday, we were living with my cancer diagnosis but did not yet know that I am terminal. This is the second birthday we’ve been together since we received the news that you will likely be a widower and our children motherless with it 2 to 3 years of my diagnosis. Despite the fact that we’ve both been struggling with this reality, you have put up with all of the things I’ve done and said in order to cope. You’ve given me the room to do what I need to do.

Know this, no matter what happens, no matter where we are tomorrow or 10 years from now, our love is forever. I will always love you and want the best for you, no matter where I am. I may not always show it, but you are pretty freaking good at this husband thing and even better at the father role to our two boys. Our boys, as well as I, know that you love them in visceral and tangible ways.

On this day of celebrating your entry into the world and every day, know that the boys and I love you, truly, madly, forever, bigger much (per M). We appreciate all that you are and everything you bring to our family.

xoxo

Abi

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!

Redemption

What does this word mean to you?

The dictionary meaning I found is as follows:

“1. The action of saving or being saved from sin, error or evil: God’s plans for the redemption of his world.

  • [in singular] a thing that saves someone from error or evil: His marginalization from the Hollywood jungle proved to be his redemption.
  • 2. the action of regaining or gaining possession of something in exchange for payment, or clearing a debt.
    • Archaic the action of buying one’s freedom.

    The origin of the word “redemption” is late Middle English: from Old French, from Latin redemptio(n-), from redimere ‘buy back.'”

    I’ve written before about how going to the Metavivor Stampede and METup Die-In in DC last October redeemed October/Pinktober/Stinktober for me personally. To me, turning the angst that October brings into something productive (or that felt productive) reframed how I thought about a difficult time period. Sort of like taking the lemons life brings and turning them into lemonade or, in other words, taking something not palatable and turning it into something that is at least tolerable.

    Thinking about Redemption in a larger scope becomes slightly more complicated.

    Recently, I’ve been watching a relatively new show, 9-1-1 on Hulu. In his past, one of the main characters negligently caused a fire that killed several hundred people. He feels incredible guilt over his role in their deaths, particularly because included in the deceased were his wife and children. In an effort to “balance the scales” or redeem his life, he vows to save a corresponding number of people and, since he is a first responder, he is in a unique position to do so. He plans to commit suicide to join his family once this job is done; i.e., once he has redeemed his life.

    This example is a bit morbid, but it illustrates how I’ve been thinking about redemption where it applies to me and my diagnosis of Stage IV metastatic breast cancer. The wide and lofty goals I had before my diagnosis no longer feel right, they aren’t representative of the trajectory that my life is taking now. So, I need some new goals, a new focus that reflects what life is like after those fateful words, “you have breast cancer” and “your cancer is now terminal.”

    So, is redemption a balance sheet? A list to tick off in order to fix something? A wider more subjective concept? How does one know when one is done?

    I’m don’t fully understand the answers to these questions yet. I can say that, for me, to find meaning in the experience of living with a terminal illness is akin to a search for redemption. The action of regaining or gaining possession of meaning or purpose is quite strikingly similar to the action of regaining or gaining possession of something more tangible. Evaluating when one has achieved the end goal is very different, of course, but the metaphor still rings true for me.

    I’m still figuring this out. I’m still wondering if I can find purpose and meaning in how my life has changed. I’m still figuring out how to figure that out.

    What I do know is that doing something helps. Doing something keeps me busy and not dwelling on negativity. Doing something shows my children how to handle adversity. I’m constantly aware of how they are watching and taking note of how I do life. I want them to remember that I didn’t just curl up and sleep away the rest of my life, that I put my big girl pants on and fought back. That I have bad days, yes, but that when the good days come, I do what I can that day.

    My boys won’t grow up seeing me going to work every day like their dad does. The feminist inside of me is still pretty upset about that. There are other women in their lives who do work, who do have big and lofty work goals. I try to remember to point that out, that Mommy would be doing that but for cancer. They are too young for that to mean much yet, but I know that their future wives and female friends need them to think that men and women can do that, if they want.

    Maybe my boys and the way we are raising them is my redemption. They are certainly my legacy, the piece of me that will remain in the world far longer than I will.

    Maybe that’s the answer.

    It is part of it, I know. Maybe I won’t know when I’ve reached the point of redemption, of redeeming the affect that cancer has had on my life. What I also know is that I have to keep going, keep putting one foot in front of the other, keep trying to figure this out, keeping doing what I can while I can.

    Clinical Trials

    Let me first say that anyone who participates in a clinical trial, at any stage, are my personal heros. It takes a lot to put your life and health on the line and I salute the trial participants and the families who agreed to participate. I am presently on my first line treatment, a drug that was approved by the FDA in 2015, a mere 4 years ago as I’m writing this blog post. My treatment is possible because of people who were willing to participate in all phases of that ground breaking trial and I was super excited to meet one of the original participants in that trial while I was in Philadelphia for the Living Beyond Breast Cancer conference. She’s still on Ibrance nearly 5 years later and truly thriving.

    Full disclosure, I’m not participating in any clinical trials right now, but I have friends who are and I’m writing this to explain what I’ve learned about clinical trials since embarking on my experience of Stage IV metastatic breast cancer.

    First of all, I always thought clinical trials were a last ditch effort, something to try when nothing else is working. I’ve since learned that this is not the case. I have a friend in a clinical trial as her second line treatment! Clinical trials are available at every stage, at every walk of life, and all over the world.

    Secondly, I used to think that clinical trials were something that only a doctor could find and recommend. I’ve since learned that this is not the case. Yes, doctors are a huge part of funneling patients towards clinical trials, especially if said trial is at the institution where the doctor is; however, part of self-advocacy is learning about trials and positioning oneself to be able to participate. For me, I’ve watched which trials are happening where and then traveled to that institution for a second opinion so that I’m an established patient there in order to be considered as a participant for any trials that meet my needs. I also send information to my medical oncologist about a variety of trials just about once a week. She tells me all the time that I keep her on her toes and I’m sure that’s not the easiest thing to deal with.

    Third, there are very practical barriers to participating in a clinical trial for patients. Geography is a big one. So much is encompassed in the issue of geography; for example, cost, traveling, childcare, etc. The way we do healthcare in the United States ridiculously skews the likelihood of survival and good medical care towards wealthy white people. Yet another benefit of white privilege and I have a great deal of ambivalence towards the fact that I have that available to me.

    Fourth, no one really understands the process of applying for Compassionate Use when a trial really is a Hail Mary for a patient at the very end. There was a lot of hype and press around the passing/signing of the law; however, the experience of it has truly been a dud. I don’t mean at the FDA level, they still approve 99% of applications, it is the drug companies that aren’t so cooperative and often send bills in the 6, 7, or 8 figures since the law says they should participate, but says nothing about sending gigantic bills that only a few people in the world could pay. Again, with the skewing towards wealthy white people.

    Lastly, I still struggle a bit with the fact that drug trials in the United States are run by drug companies that have a vested interest in the outcome. The conflict of interests is astonishing. The funny part is that I didn’t think of that until I went to a conference last year and a researcher from another country pointed out how in other countries, the government runs the trials because if a drug company would, they could be tempted to skew the results or select participants to skew the results. There’s probably an emoji that represents the craziness of how that is organized.

    The thing that gives me the most hope is that companies (drug, medical or otherwise) are perhaps finally listening to some of the patient advocates who speak up about disparities, issues, and work to address them. There are a myriad of non-profits that help to stand in the gap when patients are aware of them. Not too long ago, a friend posted about another friend’s difficulty with accessing a life-saving trial and the breast cancer community rallied around that situation to help. Within a few hours, she had transportation and accommodations for nearly free.

    We can be each other’s village when there is a need, if only we know the needs of others. There are many selfless people working hard on the difficult problem of cancer and accessing good care. We are better together.

    Higher Power, Part II

    In my last post, I gave a brief overview of my spiritual journey, leading to how I view God, a/k/a my Higher Power. This post is about how I’ve assimilated that view into the outlook that I have now, as a woman living with Stage IV metastatic breast cancer, a diagnosis that will kill me sooner than later.

    In the breast cancer groups I’ve been a part of over the last two (2) years, it seems that there are a few “camps” or groups of people when it comes to spirituality when a serious or terminal illness intrudes:

    1. The people who have rejected the view of a higher power based on the fact that there is so much bad stuff in the world and in their lives. These people may have had a view of God before their diagnosis or not, but the reality of their situation is that they reject God or any other entity as having power in the world or over their lives. The cry of, how could any Higher Power cause such evil, pain, etc., in the world, is genuine and heartfelt and I’ve been there.
    2. The people who turn to God in a really big way and always comment and post about how one just needs to “trust God” and all will be well. These people likely subscribe to a version of the prosperity Gospel, believing that if they only believe hard enough, do good enough, follow the rules, they will survive cancer, will conquer whatever issues are present in their lives. This view is seductive and draws people in who are looking for a set of rules, a blueprint, a list to follow with a certain reward. Again, this is a genuine, concrete response and I’ve been there.
    3. The people who comment “thoughts and prayers” to every ranty, ragey post, offer no solutions or true empathy. Pretending that everything is fine is exhausting and I don’t envy any of the people who fall in this category. The energy it takes to keep up the facade that it isn’t excruciatingly awful to be dying is monumental. I have tried this at various times and I can’t do it, I can’t keep it up.

    Before moving on from this list, please understand that I’m not judging any of these reactions. Everyone has their own background and framework for understanding and dealing with the trauma of a terminal illness and how their view of a Higher Power fits or doesn’t. Everyone is dealing with their own stuff in the background and I don’t begrudge anyone their coping mechanisms or how they view God.

    It’s just that, yet again, I don’t fit. A blogger I follow and greatly respect, Nancy Stordahl, has an entire post about how she’s a “cancer misfit.” Maybe I should be used to this by now, that it simply is my lot in life to be searching for a place to belong or, perhaps, making one. Yep, here I am again, defying the norms.

    Spiritually, we’ve made some new traditions and practices since my diagnosis. Perhaps controversially, we don’t belong to a church. We don’t go to a place on Sunday mornings to worship.

    What we do practice is a rich spiritual life.

    We talk about God, we read about God, we talk to God. One of my favorite books on parenting thus far is “Strong Mothers, Strong Sons,” by Dr Meg Meeker. In it, she talks about the profound affect on a son’s spiritual life that a mother can have, that a mother shapes how a son views God since the first model of nurturing is a mother. I’ve taken this to heart and despite the fact the my boys don’t regularly attend Sunday School, they know Bible stories and they know about God.

    They have this knowledge because I’m giving it to them.

    I just have to say that talking about God with children is truly awe-inspiring. With the same willingness to accept God as Mickey Mouse or Paw Patrol or Blaze, my boys come up with the richest and most profound comments about God without trying. It’s just who they are and it is beautiful. My eldest is presently convinced that God is in the northern lights. Every time we see a picture of the northern lights or see them in a movie or video, he very excitedly points out that “there is God.” I have the same feelings about the ocean, a sunset, a sunrise; God is there.

    Even though we aren’t visible in a church community, we are known. We have surrounded ourselves with people who are helpful to us, who are supportive to us, who we can support, who we can be helpful to. Some of those people are local. Some of those people aren’t. We don’t need to go somewhere on Sunday morning to experience community.

    As for God, He and I have a relationship. That relationship often ebbs and flows. He is a profound influence on my life, on who I am. We talk. We talk regularly. I also yell and sometimes call Him names that aren’t nice. I’m pretty thankful that I don’t audibly hear what He thinks of me at times. I’m not an easy person to know or love at times.

    I don’t view God the same as I did before cancer invaded my bones and my life. I don’t know or understand why He has allowed this to happen to me. I don’t know or understand why so many of my metsters die all the time. I don’t know or understand the bigger picture or why evil is alive and well in the world.

    BUT

    That’s ok.

    I’m ok with that.

    Most days, I’m ok with that.

    Some days, that’s part of my ranting and raving at God.

    At the end of the day, I come back to a fundamental, core belief that God is love. He is in control and He personifies love. I can glimpse a small amount of this love within the love that I have for my children. How I work so hard to ensure that they have everything they need (not everything they want), that sometimes a part of this love is saying no and sometimes a part of this love is doing things that my children literally hate in the moment. My husband and I do a lot that our children don’t particularly like; at the same time, we do this out of a deep abiding love for them and a desire for their best.

    How much more does God love me?

    I can’t provide a measure; at the same time, I know He does. He loves me more than I could ever love my children. He loves me more than I could ever love my husband. He loves me more than I could ever love my family. I don’t understand nor can I adequately describe this love; at the same time, I know that I feel it.

    For someone like me, who believes and trusts in real, concrete, literal, this trust in the unseen, the untouchable, the amorphous is way out of character. It’s unlike anything else in my life. Yet, I trust it. I rely on it. I know it exists with a deep knowing that outstrips anything else.

    I don’t understand why I have cancer. I don’t understand why my cancer spread to my bones and there is no cure. I don’t understand why my friends die. I don’t understand why we are ignored. I don’t understand why we are having to scream and rage and demonstrate and kick and scratch and fight for the funding to save our lives.

    I can’t answer any of these important questions that I struggle with daily.

    But I can answer this one … God loves me. He desires the best for me. It’s ok that I don’t know because He does. That’s enough most days. Other days, I struggle, I wrestle, I doubt, I scream, I argue … and that’s where He meets me.

    Higher Power, Part I

    This is not an easy topic to write about. Perhaps it should be, but I find myself in an odd place now that I’ve been dealing with a terminal diagnosis for two (2) years after all of the experiences I’ve had in my life, spiritual and otherwise. I will give some background for context.

    I was raised in a Christian home. A devout Christian home. My father was a pastor for most of my life and we were immersed in the church. When I say immersed, I mean we lived in a Christian bubble that encompassed every aspect of our lives. Since we were homeschooled, the only people we truly were around were other members of the church who were also homeschooled. It was all we knew and all that we thought was available because we simply didn’t know anything else.

    I eventually went to a public high school, but still remained in the bubble. The people I gravitated towards were people similar to me, similar to my upbringing and I stayed close with those people who I’d grown up with in the church. We still attended the same church and even though I was exposed to people outside the bubble, I stayed firmly in that place.

    That bubble burst when I was in college.

    The bubble burst because my family was excommunicated from the organization we’d been a part of my whole life. No, we weren’t and aren’t Catholic, but the method was pretty much the same. We were cast out, we were ostracized and suddenly the groups of people/friends we’d known our whole lives were quite literally enemies and/or were gathering information for the very people wanted to see my family hurting.

    Sometimes I wonder which one of us was affected the most by my family being suddenly thrust out of the bubble that had encased the eight (8) of us all my life; all I really for sure know is that I felt like I was in the middle of that storm. That’s not the story here; at the same time, when the “Christian” movement that we’d been part of my whole life suddenly turned their back and shunned us, it was devastating. It rocked my world and it cast everything into doubt. I sped up my graduation from college, in part, to get away from all of the negativity and perceived attacks.

    Then, I went to law school at Regent University, which is affiliated with the Christian Broadcasting Network (CBN). For the first time, away from “home” for the first time, I explored other views of God. I had a Catholic professor, a Presbyterian professor and a very flamboyant Pentecostal professor. In my contracts class, the ethnically Jewish professor taught us for the first several classes about the 10 Commandments from the Bible and how that affected/interacted with and informed contract principles. I went to student meetings that included speaking in tongues and other very stretching practices for me even in light of my upbringing. I often went to a Southern Baptist church with a Pentecostal leaning pastor. It was overwhelming and yet freeing at the same time. No one was looking over my shoulder and judging when I tried something new, explored practices that were outside my norm.

    What I found was that God was present in each of those practices. It was like the metaphor of the elephant, with each blind person “seeing” something different and yet the elephant was all of those things. I realized in a very real and personal way that none of the established churches had all the answers, that my parents didn’t have all the answers, that I was free to figure things out for myself. I also found that not one of the traditions I explored had all the answers.

    Yet, because I didn’t wholeheartedly accept any one of these practices or views, I was still on the outside, looking in. I was still figuring things out for myself, still in flux.

    After I graduated and moved into my professional life, I found a new way that I was not of the mainstream, being a single professional woman. There were so few of women like me in every church I tried. I could not attend a Bible study in the middle of the day, I wasn’t a mother nor a wife, and at that point, I really didn’t want to be either. The singles groups were really just a place for people to go who were looking to get married and there were some truly scary people there. Yet again, there was really no place for me.

    Then I met my husband, who is originally from Jamaica and was raised in the Catholic and attended Catholic school in Belize. We actually met online through a popular dating site and we often joke that we should’ve been included in one of the commercials that air all the time. We began attending a Methodist church (that openly presents itself as a good middle ground for couples who come from Catholic and other traditions) and we went through the pre-marital classes to have our marriage blessed by the Catholic Church. I almost felt like I was part of the “mainstream” again, that we’d found our bubble.

    And it was burst again because now as a married professional woman without children and married to someone who is not white like me, I was still not a part of the “norm.” We dealt with fertility for many years and it was really hard to be around all of the extremely fertile women, who fell pregnant without trying and were supremely happy being at home. I was and am irritated that whenever we met someone new in the church context, they asked my husband what he did for a living and assumed that I was primarily at home. When I told them that I was (and still am) a lawyer, the looks changed. Whether or not anyone voiced their opinions, no one really knew what to do with me or what to say to me.

    It seemed that anywhere I went, at all times in my life, I was always different, always on the outside, always a misfit. Underneath my irritation and sometimes anger at being singled out, was the cry of a lonely little girl who just wanted to belong somewhere. Growing up in such a compact bubble gave me a skewed view of what it meant to belong and that has affected my larger outlook.

    It hurt that I didn’t feel comfortable with the other women, it hurt that I didn’t feel accepted, it hurt that I felt judged. The versions of the prosperity gospel that I was fed at various times made me feel as though I had done something wrong. I searched my heart and cried out to God because that just didn’t feel right. It didn’t feel right that God would be punishing me by making me feel different, seek different things, not fall pregnant easily, get divorced, marry a man who didn’t and doesn’t look like me.

    When we had children, there were new opportunities. I could attend the MOPS groups, the Bible Studies for mothers. I did find a group of women I connected with, who were professionals and mothers and balanced a great deal of responsibilities. While those women met a need, there was still a hole, I still craved something different.

    So, I kept looking. One thing that is always true about me is that I don’t stop asking when I want something, when I know that I need something. I found a group of women who were like me, lawyers, wives, mothers. Our group started as a Bible study and morphed into a support group and then a play date group as we had children. The trappings of our meetings changed, but those connections were forged in something much stronger. Yet, life changed and extra curriculars intruded and we all found different priorities. I had to stop pushing for this group to remain the same and accept that we’d all changed and that group gently ended.

    Looking back, with the lens of hindsight, I think the most astonishing thing overall about my experiences is that despite the fact that I didn’t fit, that I felt judged, that I felt like a misfit, that people changed while I stayed the same, that never shook my own view of God. I doubted, sure. I tested, absolutely. I questioned, incessantly. Yet, God was always a constant, a foundation.

    I have discovered over time that my view of God matches who I am, who He made me. I am a concrete, literal person. I think first. I’m often lost in my head. My internal world is where I feel safest, where I feel at home, where I get energy. I am drawn to the metaphors of God that talk about rocks and trust and safety and a masculine presence. This is just my part of the elephant. I am well aware that others experience God differently, that their part of the elephant looks different.

    Sometimes I think I want the mountain top experience, the audible voice, the visible miracles. Then, I’m reminded that I’m skeptical of those things. Those things don’t feel real to me. I’d probably doubt my own senses if something like that would happen to me.

    God meets me in the quiet moments, the times that I despair, the nights when I cannot sleep, at the beach, in the ocean, in nature. Steady, constant, practical, safe. These are also adjectives that I would use when I described love, when I think of my Husband and how he shows love to me.

    And then the bottom fell out again when I was diagnosed with Stage IV metastatic breast cancer, a terminal illness. I learned that I would leave my husband a widower and my children motherless far sooner than I’d anticipated.

    Everything changed in an instant and that included my view of God.

    Stayed tuned for the next installment of my view of my Higher Power and how that has changed since I have learned I will leave this earth much sooner than I’d like. I don’t have all the answers, truly; at the same time, I’ve slowly but surely found what is working for me.