My Endo Journey - Pt 1

Around 14 I started having lower back pain. It started like a thumb pressing on my spine randomly but by the time I entered high school it was constant and felt like a rod being pressed into my back. Within a few months it felt like a knife permanently lodged in my spine.

I'll never forget my Spanish teacher, Senior Robinson during this time. His class was at the end of the day and by that time I was in so much pain from sitting all day that I could barely hold back the tears. He saw my pain and simply told me to stand if I needed to. He never asked what was wrong. He told me I owe no one an explanation. And so I would walk to the back of the room and stand for his class. I'm sure the other kids wondered but he empowered me that day to not be concerned with the bullshit, to do what was right for me.

My parents took me to every type of doctor imaginable. At one point I counted 9 different dr appts in a week that year. An MRI revealed a mass on my ovary. Surgery was scheduled for a week after school ended. I went under without knowing if I would have a tiny incision or a 10" scar across my abdomen.

I woke up and the relief I felt was immediate. The knife was gone. It wasn't cancer. But I was handed a life sentence of chronic pain and fertility struggles. At 15 they found endometriosis - a disease no one in my family had ever heard of. 

My mom was on it. She researched and found specialists with the most progressive treatments. One was continuous birth control. My father had to write a letter to the insurance company requesting they cover such "extreme measures". The doctor couldn't do it. I could not do it. It was approved. But every year we had to go thru the same process not knowing if the medicine I needed to live a normal teenage life would be approved or not. It was out of our hands.

That treatment - that medicine that was intended for something else, saved my life. It kept the disease at bay for 5 years. It gave me 5 years of freedom from pain to be a normal teenager. And I truly believe full heartedly that without it; my children would not exist today. 

Overturning wade vs roe not only affects those needing/wanting an abortion. It protects women from government control over their healthcare.

My parents would've paid for the medicine regardless if insurance did or not. They taught me what advocating for womens healthcare looked like, but even they couldn't have fought the government on it. 

In a month this decision won't be about whether treatment is covered by insurance (which is another whole issue). The government will have control over whether I would've been able to even receive the medicine that (despite its intentions) was the only thing we had to fight this disease. At 15. Scared. Wanting to be able to dance. Wanting children one day. Wanting to live painfree. 

Overturning this decision gives the government control over ALL WOMENS healthcare regardless if it's reproductive issues, or cancer, or whatever. It means that women will have no privacy or control over the treatments available. 

With daughters on the cusp of puberty, I am terrified that even with my knowledge and willingness to advocate for them; I will not be able to get them the treatment they need. Medicine to keep them painfree, or allow them the possibility of children one day. 

Had the government been in control when I was 15 - it wouldn't have mattered how much my parents were willing to spend, it would have been denied. They still do not recognize birth control as medicinal.

I owe my parents everything for their relentless fight for my rights. I owe my grandmother for fighting for that right they exercised, and I owe the kindness of virtual strangers who taught me in one moment that privacy in healthcare is essential. 

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#StandWithHer #womensrightsarehumanrights #RoeVsWade #womensrights #proroe 

Between Grief and Gratitude

Hey mama, guess what? 

Sydney was in her first theater production this week! It's her first time on stage and I was blown away by how confident she was. She knew her marks and the choreography; leading the way for the rest of the girls. Pride overwhelming at her fearlessness. 

I've kinda stayed away if I'm honest. I didn't do it on purpose but it is odd behavior of me not to jump in and volunteer. The week leading up to it felt so strange to just drop her off and go. I told myself it was because the other kids have things too and I need to stop stretching myself so thin. But what I realized at the opening night last night that it was much more than that.

From the moment I saw her on stage it was as if I was submerged in a raging sea, being tossed like a rag doll between grief and gratitude; joy and anger. It was all I could do to stop from weeping. 

It hit me so hard. I can usually feel it coming on. An anniversary or birthday; the holidays... but this one I ignored the  buildup refusing to acknowledge it until it became too much to bear.

You would've loved this moment so much. I'm sure you would be making her costume and helping backstage with me. It would've been such a moment for the three of us. So many moments you should be apart of that when I'm not prepared they end up sucker punching me right in the gut.

If you were here you would tell me not to live in that space for too long. That I need to forge a new path, new norms and our own memories as she takes on this new passion for the stage. And I promise I will. 

Gratitude for the skills you gave me to do this thing called motherhood. The space to find my own way. And the joy of so many memories in the theater together. I want that for her too.

Walking out of the theater last night I began wading upstream amongst the cast and proud parents and family to find her, happiness taking over. Of course she was one of the last ones out... reminding me of me.  When she saw her teacher and good friend she bear hugged my arm and tucked herself behind me. She hasn't done that since they had to rip her from my arms in the carpool line for preschool. I laughed so hard at the joy I felt in that moment; it made me realize that her and I got this. 

We've got some exciting days ahead of us that I am going to dive into with a full heart. Joy calming the raging sea once again; with a gentle rock - finding the space between grief and gratitude to settle in. Letting you ride the waves with us.

Women with Grit and Grace - Grandma Pat

Hi kids,

I played a trick tonight to get you to laugh and that allowed a bunch of memories to flood thru of a very important woman in my life. One that you never got to meet but whose love helped shape who I am today. She is the epitome of Grit and Grace, something we are talking alot about at work right now thru this quarantine. And as this time will forever shape your generation and change the way we live our lives, it's given me a chance to reflect and think.

Your Great Grandma Pat was one of a kind. She was feisty, and strong, and didn't take shit from anyone. If you saw her standing with her hands on her hips and staring you down, you know you did something wrong and you were gonna hear about it.

She had Mimi when she was only 19 and their relationship was a tough one in the beginning. My mom, Mimi never knew who her biological father was. It was a family secret that was never talked about so I didn't even know until I was in my 20's. When grandma finally gave her his name and Mimi asked why she kept it a secret, she said it was to protect her family. That's how things were back then, she was a single woman, pregnant and alone in the 50's. It had to have been tough. The summer before Mimi got sick, she shared Grandma's truths surrounding her biological father and asked me to help her find him; not to invite him into our lives but something she just wanted to know her whole life. We never got a chance to close that chapter for her before she died, but one I intend to someday. Mimi lived with her grandparents for many years when she was little; your great great grandfather Stanley and great great grandmother Anastasia - man does that make me feel old to say that! They were immigrants from Poland and came to America thru Ellis Island when they were about 16. He was a baker and Mimi first job was at a do nut shop as a teenager. One of her many skills she perfected over the years were these amazing cakes. Sandcastles, spider man and wonder woman, you name it she could create it. Always made birthdays and occasions so much better with one of Mimi's cakes. But that's another story.

Grandma Pat was a bartender, pretty unique in the 50's and at some point changed careers into real estate I believe. To be honest I'm not really sure what she did exactly. I remember a mustard colored blazer she would wear, but I was so young when she stopped working, all it is is a flash of a memory. I never asked, it never occurred to me to wonder what that blazer was for. Mimi was one of the oldest and helped care for her siblings when she married grandpa and blended their family into 8 or 9 kids. We didn't really know most of them. They didn't have a lot of money and I can only imagine how hard it was raising that many kids. I mean you four really give me a run for my money already!

When I was young we would spend whole weeks with them at a time, usually with my sister, your Aunt Chele. I always loved going there and would beg Mimi to let me stay longer. Grandpa Cozart worked for GM on the night shift. We would stay up super late playing Gin Rummy and laughing, waiting til grandpa was getting off work. We'd pick him up and go to a diner and eat whatever we wanted. We'd get home after 4am and sleep until noon. It was the best. I always loved staying up late, I swear there's a night owl gene. She taught me to make goulash and to use a cast iron skillet for sausage and gravy. She was not perfect by any means; she was a smoker and had a hard time throwing things away. Something that got worse once grandpa was gone and she was alone. She was active in her local Lions group and had quite a social life. Everyone loved Pat. She was funny, and kind, and as I knew her always said it straight.

When I was a bartender in NYC she would call at all hours of the night to chat because she knew I'd be up. One night, I was off but was restless. I found myself sitting alone at my local bar Ruby's. I knew the owner Stan and all the bartenders and most of the customers. The upper east side of Manhattan got really small when you worked and lived there and when you are in the service industry it's just part of the culture. You can't help but know a lot of people in the industry. She called that night and when I told her where I was and that I was alone she lost her shit. I don't remember ever hearing her sound scared in my life, but she was terrified. I laughed and said grandma this is normal now and thanks to women like her who trail-blazed our way, women were now equal to men and could do what we wanted. Naively, I didn't realize she was terrified for my safety. 

While I was living in New York, Mimi began researching her family tree and worked relentlessly to get grandma's parents documents in orders. Ellis Island erected a memorial and you could request their names be engraved on the sea of walls with the names of immigrants that came thru the harbor. It wasn't easy. Many documents were hard to find because names and spellings changed because the immigration officers wouldn't know how to spell or pronounce all these foreign names. They also had lied about their age to get here and many were much younger coming over than allowed. But eventually she got all the paper work and got their names on that wall.

Grandma Pat and Grandpa Cozart would often come see my dance performances in college and my senior year when they came to see my final performance we took the ferry over to the island. It was a gorgeous May day, warm with a cool breeze and not a cloud in the sky. I couldn't have been happier in that moment. I had a job lined up at Broadway Dance Center that would allow me to continue dancing for free and take time off to audition when I needed it, I was the first person graduating from college in the family and the ceremony was happening in a few days. The dance dept put on a gala every May that only the Senior Dancers were invited to and Mimi had surprised me with a gorgeous red dress that she had made to wear to it. It was stunning. My friends were my family in New York and we celebrated hard with parties, and dinners, and the future ahead. All things the seniors of 2020 have now lost due to this pandemic, and it makes me so sad for them.

When we arrived to Ellis Island and found their names in the maze of walls she stood there, staring at their names in silence. After a while, she gently lifted her hand and placed it softly over each of their names. Mimi and I were crying but she just stood there with her hand on their names. It was so beautiful. I never knew them but in that moment I saw how important that was for her and for Mimi. I wish I would've asked more stories about them, about her childhood, but when you are young you don't think of it and take for granted that they will be around to ask later. One day we will take that ferry ride together and I will show you your ancestors names engraved. It's such a beautiful site to see all the people that passed thru there.

When grandpa got sick again, I got the phone call from my mom and dad that things were getting worse. I was in a cab running late for work, another beautiful day in the city. I knew I had to get home and my parents booked me a flight for that night. I walked into the trendy rooftop bar where I was making good money, probably one of the best of many bar tending jobs I held during that time, and said I needed to leave. No remorse if they were going to fire me, I had to get to my family. Thankfully, they didn't and we covered my shifts and I was on my way. The flight to Detroit was delayed and I had a lay over in Cleveland ironically. We landed after midnight and I missed my connecting flight. I tried to rent a car, but I was too young and there was a very nice gentleman in line behind me. When my tears and pleading didn't work at the rental place I was sure I would never get to say goodbye to one of my superheros. Devastated I turned and went to find a place to sleep for a few hours until morning. That gentleman who overheard my irrational pleas came up to me and offered me a ride. I didn't hesitate and jumped in the car with a complete stranger. I called my parents and said I was on my way. The guy was engaged and talked about his fiance the entire time, I think to ease me that he wasn't out to attack me. Now don't think this gives you a pass if you do this. It was so stupid and thankfully everything worked out but it could've very easily gone a different direction.

As we pulled up to the hospital, there was grandma, hands on her hips and her lips pierced. I knew I was in trouble. I jumped out and walked up to her ready for a hug and she slapped me upside the head. I'd seen her do this to my siblings, uncles, whoever but she had never done it to me and I was stunned. She immediately grabbed me and hugged me so hard I thought my ribs would crack. She whispered in my ears, "if you ever pull a stunt like that again, I'm gonna do more than hit you over the head. But I am so happy you are here." I can't tell you how long we stood there just holding each other so tight. We were in that hospital for days, or maybe it was weeks I'm not really sure. Everyone was there and we took over the waiting room, taking turns sitting by his bed. It was the first time I ever had to say goodbye to someone who was essential in my life. I was so lucky to have all of my grandparents so present in my life.

Someone bought a big puzzle and we all took turns for hours putting it together. It helped pass the time and was a welcome distraction. Grandpa was close to the end and we were putting the last pieces of it together, everyone determined to finish that damn puzzle. We got to the end and were missing a piece. It was such a stressful moment, being in that hospital days on end, losing grandpa, and finishing that puzzle became this hugely important moment. When the piece was lost we were devastated.

At some point grandma came over, looked at it calmly and reached into her pocket. Still staring at the puzzle, she slowly pulled her hand out and put the final piece in the puzzle. We were furious, and relieved, and yelling, and then we were all laughing hysterically. She wanted to put that final piece in and literally stole it and just waited for her moment. It was genius, and perfect and exactly what we all needed to ease the tension and sorrow. She ended up framing that puzzle and it hung in her home from then on.

When your father and I fell in love and decided to move in together, he was living in the suburbs of Chicago. I had moved there in 2003 to be closer to family but still have the city life I loved. Grandma Pat came to visit our new home and we stood out on the balcony looking out over the pond that was behind the townhouse. She stood there quietly deep in thought and she asked me one simple question. "Will you be happy here, this is so different than what you are used to?" I looked at her and said "he is my home wherever that may be, so yes I will be happy here." That was all she needed to hear and welcomed your dad into her inner circle of love.

She partied with us at our engagement party, our co bachelor party at a dueling piano bar, and danced the night away at our wedding. She died with her family by her side, dramatically and quickly. It shook me to my core. Your dad and I were in Captiva and missed the family canoe trip on fathers day. When Mimi called to break the news I was broken and shook and the need to be with family overwhelmed me once again. I took it out on the one person I could and your dad and I had our worst fight we've ever had. He got me home and to the funeral just in time though, and even though we still challenge each other we vowed never to fight like that again.

There are so many questions I have for the people that I've loved who are gone now that I can never get answered. And as amazing as Grandma Pat was there are things I've learned that I can't wrap my head around. That I don't agree with or understand how she could make those decisions. But regardless of that I love her deeply and I want you to know her as I did. The stories you may yearn for one day.

I got to tell you one of those stories tonight. We are on our 2nd 1000pc quarantine puzzle and it was the perfect one. It was a map of Sanibel and Captiva with all our favorite spots highlighted. It was my perfect moment. I waited for the scream as you all knew I didn't want any pieces to fall to the ground and Rosie to grab them. I drilled it into you how much this puzzle meant to me and how upset I would be if we lost any pieces. And tonight it finally happened. They were devastated to lose a piece and were so sad to tell me. I walked calmly over to see, staring at the missing hole. Then I slowly reached up to the top shelf of the bookcase and pulled it down and quietly placed it in the puzzle. The shock on your faces was perfect, papa started laughing immediately knowing why and then we all started laughing and joking. It was perfect.

So kids, when you are in the next wave of hardship and just trying to survive, steal the puzzle piece and be the one to allow laughter and joy back in. I promise you, you will need it again one day.