Looking Back, Post 5

I wrote my cancer series when I first decided to start my blog. To clarify, I am not a writer who takes an assignment and writes. My words come from my gut. They are visceral. One Sunday I pulled out my cancer binder and began flipping through pages. Reading lab results, mammogram reports and copious notes. Subsequently, this cancer series was born.

Meanwhile, going back through the pieces and looking through photos of that time, I am struck. During the whole ordeal, I just kept going. Having three small babies means I had no time for cancer. I continued to coach soccer for my youngest, co-chaired Purse Bingo for our kid’s private school. I attended Mother’s Day celebrations at pre-school, fed my family and registered for activities. Valentines were made and chore charts kept up with age-appropriate activities. Am I tooting my own horn? No. I am actually disappointed in myself.

I am sad for that version of me who didn’t get off the wheel and didn’t rest. Unfortunately, I can’t report that I am a better version of myself today. Ultimately, I still have a hard time saying no. Most recently I volunteered to be the score taker at my son’s high school soccer games. My husband just shakes his head and says, “really?”

My editor worries I will burn out. I wrestle with being a person who just cannot stop. I literally don’t know what to do with myself when I have nothing to do. Which is never. So it isn’t a problem. However, there are moments or times in our lives that it should be okay to release the wheel and let others take over. Is it a control issue? Do I feel like I am the only person who can do it “right?” I don’t know. 

But I recommit to continue writing and noticing things in my life. So here is my challenge for you: go into your saved photos, either on your phone or computer. Think of a really hard time in your life and scroll through your visual story. Ask yourself, did you take care of you? I hope your answer is different than mine.

Driving to radiation
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The Interview, Part 4

The date of my mammogram was November 5th.  The day of my biopsy was November 12th.  In short, it was an agonizing wait. We did not tell the kids because we obviously hoped it was negative. To be honest, I can’t even remember telling my parents, or when I told them. It had to have been awful. On November 20th, Dr. Khouri called my cell phone. I was standing at my bathroom sink. His soft, kind voice started. I am sorry, Ms. Moore. You have breast cancer.

So you’re asking yourself, how did we go from triathlons and left breast pain to this shit show? Likewise, I ask myself that very same question. How the heck did my life turn into this? For instance, one minute I’m running babies to Mother’s Morning Out, Pre-k and Kindergarten, getting groceries in my two-hours of freedom, the next I am sidelined with this. Head spinning, I am ordered to have an MRI, which leads to more biopsies and ultimately, I start interviewing surgeons.

Here is where I will offer some advice. You absolutely must interview surgeons. Do not just go to the person that is close to you and call it a day. I live in a rural area outside of a major metropolitan area. I went to my local person thinking that would be a good fit. After all, they drive in from the big city, so I could receive big-city care while staying close to home and continue taking care of my kids. Win-win. Minimal interruption for my kids because a mom’s job is never done and excellent care for me. This is just a stumbling block (ha).

My dear friend and cancer survivor gives me advice: go to a breast center. Do not manage your own care. Go to a center where the surgeon, radiation oncologist, oncologist are all on the same team. They are reviewing your case in concert and are all communicating. Of course, I had to chart my own path so away I went to the surgeon closest to home.

My husband and I go into his office and sit across the desk from him. A man in his late forties (I’m terrible with age) sits across the desk. He explained his approach to my situation.  He was dry and to the point then asked if we had any questions. That was it. Leaving the office my husband (also a doctor) told me that man would not be touching me. I was starting to think that perhaps my friend was right.

After that, our next stop was at Johns Hopkins Breast Center. But before we get to that, I need to take a moment to discuss privilege. We have the privilege to have the means and the access to the best healthcare options. It is my privilege to have access to a provider who listens to me and is willing to order testing early. I am empowered to seek medical care when something isn’t right. I experience positive appointments without barriers. And now, I have the means and ability to drive myself over two hours to one of the premier research hospitals in the United States. In sum, I wish we all had such access.

When I met my doctor, he impresses me. Above all, he wants to know me. He asks about my kids and how I am doing. I ask about his kids and get to know him as well. He does an exam. He talks to me and my husband about my results and about our options.

Above all, we have options. Radical mastectomy or lumpectomy with radiation. We need more testing before we made any decisions and nothing needs to happen fast. Really dude, did you hear I have CANCER? In addition, Christmas is fast approaching. He wants me to soak in my babies who were now 3, 5 and 6 years old. The plan is to finish up the testing and to make the best clinical decision based on that information. I make my decision. I hire Dr. Euhus. He passed the interview. I would not do what was easy, I would do what was in my best interest.

The Answer No One Wants. Part 3

I’m in trouble. It’s all I could say. I didn’t know how much trouble, but I knew by the way they were acting that this was not good. He was working and couldn’t leave. I really couldn’t have a conversation, so now he was just as anxious as I was. Texting my mother was out of the question because this would level her. I needed to just pull myself together and walk through this. So, into the ultrasound room I went.

The radiologist, a woman, was so kind. She explained what she saw and shared that the mammograms were going to be read by a second radiologist. The next step was for biopsies to begin and how many would be determined by the final mammography and ultrasound reading. They would be in touch soon to schedule the next appointments. 

Results: Bi-Rad 

Assessment: 4 Suspicious Abnormality. 

Down the rabbit hole I fell.

I don’t think I am going to shock you by letting you know now that I have cancer. I am definitely going to go into gory detail, but I decided to share this now because the next part of my story is definitely the most agonizing for all people who are awaiting results. Do they have cancer or not? This does not apply only for breast cancer. To those who have not fallen down the rabbit hole, it would appear that this is an emergent time and that things should happen quickly. Note these two things:

  1. Time cannot move fast enough for the patient or the family.
  1. It is not an emergency to the doctors and staff who see these things everyday. They do care, they just need to manage their processes and appointments and you need to fit into those. This means that it is unlikely that you will be seen tomorrow. And you will be mad and offended that your fear is not their emergency. It is something that one must unfortunately come to terms with.

So before BRACA testing and oncotypeDX scores, I started with a stereotactic biopsy. My Radiologist, Dr. Khouri, was incredibly kind. This is a very strange procedure and one of many I would become accustomed to. Lying on my belly, I had to stick my breast through a hole in the table. In this case, they raise me into the air and Dr. Khouri is under me. He made the incision, did what he needed to do, and all the while spoke so gently to me, like a friend or father.

His kindness put me at ease. He put me back together with steri strips and gave me an ice pack. He gave me a pamphlet explaining that the tissue was going to be analyzed by three pathologists in a blind review. It would take time to get the results, but he would be the one to give me a call as soon as he knew. With a smile and pat on the shoulder, he sent me on my way. Little did I know our next conversation would be life changing.

I’m In Trouble. Part 2

Do you know how long it takes to get a mammogram when you are worried about something? Do these people understand that they should have special spots for mothers with young children who are freaking out and positive that Mr. Google has told them they are dying? What do you mean three weeks? With nothing left to do, I waited. I sat anxiously and convinced myself that all the anxiety I had to date was actually me, once again, just spinning nothing up into something. 

Finally the day came. I am going to get some answers and although I worry, deep down I hear Ruby’s words of encouragement and felt some peace. They took me back. Time for my first mammogram. Bra off, gown on, wipe your pits, no jewelry, no perfume, smash boob, don’t breathe, smash again, let me feel you up, don’t breathe. Okay sit.

And sit I did. I wait. And wait.

They called me back in again. We need to get a few more views. I am fine with this because it seems normal. I have not had a mammogram before.  No problem. Not knowing to ask questions or even what the questions would be, I just did what she asked. Smash, smash, feel, feel, don’t breathe, sit.

Sit. Wait. Sit. Starting to feel a little funny.

They called me back again. Okay, just one more set of shots and then we are going to take you in for an Ultrasound. Um, hold the phone there, hoss. What are you talking about? Why are we taking more photos? The technician explained that they found something called microcalcifications in my right breast. She explains that microcalcifications are found in most breast tissue and that they can be caused from trauma like a car accident, or can be caused by aging. They aren’t really a concern unless they are clustered together. Of course, mine are clustered together. So that meant there was a concern? I guess so.

With adrenaline pumping, I tried not to freak out as she took those additional shots. My quick mammogram appointment had, at this point, turned into a three-hour appointment and it wasn’t even over. I head for an ultrasound next. After that, I asked if I could text my husband.

Chris: I’m in trouble.

The most precious gift I received, a handmade book of quotes from my friend. I still keep it in my bedside table.

You Can’t Run From Cancer, Part 1

I remember it like it was yesterday, although it is a time in my life I try to forget. But do I want to forget it? Afterall, my children were still babies. Who really wants to forget that precious time in their lives?

At first it was a dull pain. It was periodic and barely noticeable. It started in August and I was distracted with chasing around three small children who were just 2, 4 and 6 years old at the time. I found myself fighting for “me time” and struggling to get my pre-baby body back, so I trained for a triathlon. This was no small feat, it was a commitment. It involved biking on the weekends, running during the days, and swimming after bedtime. By the time the pain rolled around, I was combining all three of those things (called a brick in triathlon lingo) in anticipation of my October 5, 2013 event.

As the leaves turned and school began, training became intense. Unfortunately, so did the pain. It was a stabbing in my left breast that was not constant, still periodic, but insisting on its presence. The hot stab would come out of nowhere and by the end of September would wake me from slumber. I surmised that it was part of training for the triathlon because, everything hurt at this point. I was nearing the finish line of training and ready for the event and nothing could stop me now.

The Osprey Sprint Triathlon is held on the Eastern shore of the Chesapeake Bay in Maryland. The open-water swim is protected in the beautiful waters of the Chincoteague Bay and is near my family home. The morning of the tri, I downed my beet juice while it was still dark, loaded my gear in my car, and headed to the race. I did not sleep much the night before, not because of nerves, but because of the return of the stabbing hot knife pain. I was going to have to stop training after this and go to the doctor if it did not subside.

So there I was on the day of the big triathlon. I didn’t die, which was actually my main goal. I was never under the misconception that I was actually a competitor. My goal was to finish, and I did. Interesting fact about me-I hate running. Why do they have to put that last? I know, they don’t want you to drown in the water so swimming is a good first. But really, we have to finish with my hardest of the three? Although I finished, I’m pretty sure the guy was collecting the orange cones as I trotted my way into the finish line. But damn it, I did it!!!

In the coming weeks, I really dialed it down. I ran in one of the night glow runs with friends, but not much more than that. At the end of October, I went to visit my OBGYN because that pain had not decreased. It was still screaming at me, a silent but painful reminder that maybe something wasn’t quite right.

My OBGYN, Ruby, and I had walked a very long journey of many miles together prior to this step. Infertility is a long road and one that I, like many others, had to walk. I did so with Ruby by my side because all three children at that time were conceived with assistance. She held my hand through emergency surgeries and told me everything was going to be okay. So, here we were again. What in the world now?

Her words, “I don’t feel anything, you are a healthy 37-year-old with no family history, you just finished your first triathlon, you do not smoke or drink to excess. I have no reason to believe this is anything other than a fantastic opportunity to get a baseline mammogram before you are 40. But Jan, get the 3D when they offer it, I want you to be sure to get the 3D mammogram not the regular.” With that I left her office and scheduled the appointment. Hormones. It was hormones to blame. Or was it?

Learning Differences, A Teacher’s Perspective

Hi readers! Today I am sharing the pen with someone who has first-hand experience working with students who have dyslexia. She has shared with me numerous times about how these students have changed the way she looks at learning differences, so I asked her to share a bit of her story with you as well. 

Hello, sweet readers! I am so honored to be invited to share a little bit of my story with you all today. 

I am a seasoned educator with over 18 years of experience both in the classroom and in school leadership. Some of my educational roles include new teacher mentor, curriculum developer, professional development specialist, and most importantly, a teacher. I have spent many years honing my craft and have been known to say that I have seen it all when it comes to education. I consider myself an expert. Well, this past year I realized that even self-proclaimed experts have something to learn-especially when it comes to how children think and process information. 

Last year, my dear friend came to me with a problem. The independent school where she works was in need of additional support in their program. Covid had reared its ugly head and like all schools, hers was desperately searching for more professionals to support the online, in person, and hybrid learners. I can’t say no to a student in need, so I agreed to teach 3 English classes to students with dyslexia. 

Today I want to spend some time talking about some things I learned during my time with these amazing students. 

  1. People with dyslexia are usually more creative and have a higher level of intelligence. These amazing kiddos are fascinating. Both of my students are talented and gifted artists that absolutely communicate big ideas through their art. They taught me to look for that, and it has made me a better communicator. 
  2. Dyslexia is way bigger than letter reversal, although sometimes writing can be a stumbling block for these learners. They taught me that writing is never a one size fits all skill and that sometimes less really is more. 
  3. Because these friends often think or process things differently, it can be hard to maintain friendships. But, my goodness are they fiercely loyal once they connect with you. They taught me how important it is to really take time to walk a mile in someone’s shoes. Their academic lives are far from easy, but they persevere with grit and determination. 
  4. Sometimes it is essential for students with dyslexia to have different ways to show understanding. They taught me that sometimes it is important to think outside the box when assessing students. 
  5. Teachers can absolutely learn from their students. I left last year a better, more empathetic, and well-rounded educator simply because I had the privilege of working with students with dyslexia. 

In summary, I learned that dyslexia is intricate and different from person to person. I learned that although learning differences can have commonalities, it is important to understand that it may challenge students in different ways. 

Thank you Jan for inviting me to share with your readers. I appreciate all of the work you do raise awareness and support for those with learning differences.

The Grief Narrative and Our Transgender Children

Nearly six years deep into our transgender journey, I still struggle to understand the grieving process many parents describe. It is a pervasive narrative for parents of newly transitioned children, no matter the age of transition. Commonly, parents describe a feeling of loss over the gender of the child, a name, or for future events. 

Today at work I comforted the father of a patient after the sudden, tragic loss of his 37-year-old wife. She was the mother of three boys, 18, 13 and just 5 years old. While the 13-year-old was being seen by my husband, I asked the father to step outside with me to talk. 

As he wept, he reiterated several concepts repeatedly.

  • He thought he had more time.
  • He would give anything to be with her for just a few more moments.
  • He does not know how he will get through this.
  • He had to go to the doctor because he felt like someone was standing on his chest. After being thoroughly examined it was determined that he is healthy, nothing wrong. His heart is simply broken.

I hugged the man as grief washed over him. Mostly listening, I gave him space to speak the words on his heart to a stranger. His wife had always been the one to cross our threshold for monthly appointments. As his son emerged from his appointment, I expressed my condolence. They got in the car and went home to walk through the unimaginable. This, my friends, is grief. 

Some parents in the transgender community will take issue with this post. Asserting their right to grieve the loss of what “should have been.” I understand that grief takes many forms, but it is the way we handle it that is important here. Many things in life do not turn out the way we plan. Be it a cancer diagnosis in our 30s, infertility, not making the team, or having a child with learning differences, to name a few. As adults, we know we need to pick ourselves up, process and reframe our expectations. When we place the burden of the changed direction upon our children, when they become our support and sounding board, we are failing as parents.

“Grief as a reaction to transition is transphobic; it reduces a person’s very being to their gender, and reveals that a loved one cares more about a phantom image than for the trans person they supposedly love, who is right in front of them.”~ Talusan, M. New York Times, Oct. 20, 2019.

Transgender adults should not have to teach parents of transgender children to model resilience. Nor should they have to listen to the grief narrative. When I enter into Facebook forums or Clubhouse rooms, I find a consistent drumbeat from parents who are sad about the name change or that their child will not have children. I challenge parents of transgender children to reframe the narrative.

You are part of a special group that 79% of families don’t have access to. How lucky are we that we are granted access to the most private, core part of their being- their identity? Let that sit for a moment. The HRC’s Youth Behavioral Risk Survey shows that only 21% of lgbtq teens have shared their identity with their family and a mere 6% disclose to grandparents. ~HRC 2018 LGBTQ Youth Report. The same survey shows that:

 Trans youth are over two times more likely to be taunted or mocked by family for their LGBTQ identity than cisgender LGBQ youth.

Resilience. When my children were very young, I went on a book binge reading how to instill this mythical concept in my kids. This was the before. Before cancer, before transgender, before learning differences. Resilience is simply being able to get back up after life beats you down. Knowing that it can be difficult, but it will get better. Our children, being able to express their identity and absorb all that life throws at them- that’s some wicked resilience. We should be modeling the same by being that soft place to land, to lean into the headwinds, we are leading by example. Grieve privately, away from your child and become their cheerleader.

But wait, you say. I should be able to grieve the loss of the wedding, the name I spent so much time picking out, or the fact that I will not have grandchildren. I hear you. Talk to your spouse or best friend about this, but never your child. Put the pictures away, pack up the Christmas bulbs and go all-in affirming your precious gift, your child. The person you brought into this world is the same person sitting before you, only better. Because they feel comfortable in their own skin. I know it is a scary world and people are transphobic. Do not put your child in the position of living in a transphobic, unaffirming home. It is a recipe for unending grief. 

42% of LGBTQ youth seriously considered attempting suicide in the past year, including more than half of transgender and nonbinary youth.~ The Trevor Project, National Survey on LGBTQ Youth Mental Health 2021.

Being the parent of a transgender child is special. The authenticity that my daughter has shown me, from the very youngest years, is admirable. She is quietly, unapologetically, steadfast in her identity. I want to be her when I grow up.

Equality and Non discrimination Statements

Most companies and organizations have one important thing in common. If you visit their websites or look at a job posting, you will likely find the equality and nondiscrimination statement. Most of us just gloss over it. After all, it is just legal jargon and really doesn’t mean anything, right? 

Today, we are digging a little deeper and looking at what that means. Let’s look specifically at educators. The gist of a non-discrimination statement is that it is a guarantee that human rights are given no matter the sexual orientation, race, color, language, disability, etc. Can we chat for a minute about what that “should” mean for transgender children in schools?

  1. Educational institutions adhere to Title IV. If you reach out to your school about your child’s gender identity they might give you a copy of this document. It is good to review this document prior to meeting with or approaching the school.
  2. Educators will respect and use the preferred pronoun for transgender children. In fact, welcoming schools will lead with pronouns on emails, badges, and in the classroom to normalize respecting pronouns and model affirming behavior. In my son’s high school English class, his teacher gave out a questionnaire on the first day of class asking several questions. Specifically, they asked for preferred pronouns. My son came home so excited to see an affirming teacher.
  3. There will be alternate ways to line up students for games, activities, field trips, or concerts. Meaning: no more exclusive girl or boy lines. 
  4. Speaking of concerts: educators should do away with “girls in skirts and boys in slacks” for band and chorus. It is fine to have clothing choices as long as children get to dress in the clothing they feel comfortable in.
  5. Gender diverse children will be able to use the bathroom of their affirmed gender. Even better: single stall, gender neutral bathrooms. This means that the person has a private bathroom so people cannot peek under to out a person. Above all, bathrooms are frequently a source of fear and harm for transgender people. Privacy and protection should be on the minds of educators who are in charge.
  6. Transgender children should be able to play on the sports team of their affirmed gender. 
  7. Health education: dividing students according to the binary stigmatizes sex, puberty, and relationships. In addition, children who are not hetero, cis-normative can feel uncomfortable or even fearful of being outed in traditional health education. An incredible resource for inclusive health and puberty education was created by Gender Spectrum. Find their Principles of Gender-Inclusive Puberty and Health Education here.
  8. Children will be able to access literature, history and information that reflects their lived experience. 
  9. Historically, virtual classrooms have been incredibly problematic for transgender children. Ensuring that children are not dead-named or misgendered by electronic systems is imperative for metal health and safety.
  10. The Human Rights Campaign has created a Welcoming School program. To sign up for their newsletter or read more about how your child’s school can be welcoming please visit their website. 

In conclusion, look closely at your employer’s non-discrimination statement. Moreover, think about what that really means for you as an employee of that company. Do your everyday actions align with those statements? Are there areas where you could improve? For, what to you might be some legal jargon at the end of a website, is actually a life-saving statement for a transgender child.

Dear Jan

Hi friends! Today I am going to introduce a new feature on the blog called “Dear Jan.” This blog was born out of the need to build a positive space for marginalized communities and to educate those who support these precious people. In order to best support and educate, I am going to be taking time each month to answer some reader questions. 

Dear Jan,

Like many parents, the new school year is a time I look forward to. A time for fresh starts and new adventures. On the other hand, as a parent of a transgender child, this is also a time of heightened anxiety and worry. The protective bubble of summertime is about to burst and I am simply overcome with concern. Any advice on how to handle the back-to-school blues?

Dear Reader,

I sat in a parent meeting about this very subject two weeks ago. It was a small group of five parents. Kids entering different grades but all with the same concern. How are we going to do this?

The most important suggestion I can make is to identify a safe adult at your child’s school. In my experience it is vital. When my newly transitioned first grade daughter was in the first grade, the school administration brought me in for a 504 meeting. They slid Title IV across the wooden table and asked if I had questions (note: this was before DeVos destroyed Title IV). In any case, I asked that her teachers use appropriate pronouns and think about how students are divided up. That dividing by girls/boys is problematic at best, harmful to non-binary kids in reality. I gave many suggestions, counting off, favorite color or pet. They agreed and moved on to bathroom usage. They deemed it best that my child use the nurses’ bathroom so as not to “cause any issues.” 

To make a very long story short, neither the gym teacher nor the school nurse were affirming. She was lined up in the boys line, misgendered throughout the school year, including when my mother was called to the school when we were out of town. It was April and the nurse left the handicapped seat on the toilet. My daughter was drenched in pee from her pants and underwear down to her shoes. When my mom (also a school nurse) arrived at the school the nurse told her that “he” peed his pants. My mom, God bless her, lost her mind. 

She was never misgendered in her classroom nor by the art or music teacher. I do believe that the administration had her best interest at heart, even with the ignorant step of having her use the nurse’s bathroom. But my daughter needed someone she could go to who was safe. She did not want to disclose to everyone in the school that she was trans. She needed an affirming adult that she could go to should another adult or student hurt her. 

All these years later she is in a private school that I believe is really affirming. She still does not want to be out to everyone but she has a very affirming, trusted adult who she can go to anytime without question, if she needs it. Out of this need for safe spaces was born our window cling. We have created small vinyl window clings to denote Safe Spaces. They can be placed in any window or on plexiglass and are a silent symbol that we are affirming. 

If you need help in approaching your child’s school, or would prefer not to out your family please reach out to me through www.narwhalmagickindness.com We can send Safe Spaces program literature to your school so you can remain anonymous. 

Remember: deep breaths and put your oxygen mask on first. Letting our children go back to school is especially difficult this year for many reasons. Layering a change in identity or facing bullying of the past is extra hard for our kids and hearts. You can do this!

Big Announcement

The team here at All Are Welcome has big news to share! We are in the process of writing not one, but two books! Eight months ago, I decided to take the leap and expand our current site, Narwhal Magic Kindness. I felt pulled to share more personal accounts and stories alongside the nonprofit work that we do over at Narwal. Because of this, All Are Welcome was born. Sharing these stories with you has opened something inside of me that I never really knew existed. It is my greatest work. 

Not long ago, an educator shared with me how important it is for children to see themselves in books. That stories from marginalized communities are often untold and when they are, the stories rarely skim the surface. This led me to various local bookstores to really look at the book selection that features transgender children. Friends, it was heartbreaking. Tucked back in an obscure corner were a handful of books all lumped together. There wasn’t even a proper section for them.  

Children who see themselves in books feel empowered. Stories help us to feel brave, seen, and important.  That feeling I had when I launched All Are Welcome was back. I knew that I needed to write a story to include some of the delicate moments transgender children must face and we are so excited to share this special story with you in the months to come.

In addition to the children’s book, I feel led to write a companion book for parents. We are working hard over here at All Are Welcome to map out the specifics, but know that a resource is coming soon. Because of this work, we will be dropping our posts down to one per week. We want to spend as much time as we can researching, writing, and gathering resources for our community. We are just so excited. 

I am so blessed to have an incredible team as I move forward with this project. My editor, Dawn, has been the cornerstone of my blog and helps organize my thought process. An I am incredibly grateful that Maryellen Kim has agreed to work by my side to bring to life the words of my daughter and myself.

So thank you, my readers, for following alongside me on this journey. Big things are on the horizon and we are so happy that you have a front-row seat for the show. All are welcome.