The calendar tells me it’s been eleven years since you’ve left this earth. It tells me that you’ve had eleven heavenly birthdays with Jesus. Yet to my heart it feels just like yesterday. Your death it forever shaped me. Your death taught me that not all babies come home. Your death taught me that you were to beautiful for earth and that Heaven needed you more.
You Lucia made me a mom and you will always be my son. Even though my heart wasn’t ready God knew I was strong enough to become the mother of an Angel. My womb became your tomb. And my heart knows that you were not alone when your heart took its last beat. You were in my womb surrounded by love, you were comforted, and when the news broke, a little bit of me died with you. The words “I’m sorry there is no heart beat,” broke me in more ways than I care to describe. I wanted your short life to matter so I donated your body to science. Some good had to come out of your death and if you could help others I was all for it.
To this day we do not know why you died. You were genetically perfect. Your organs were as they should be, it’s just for some reason only known to God your heart stopped. Not having a why is a hard pill to swallow, yet I have faith that one day God will tell me the why.
For now my heart often wonders what would my eleven year old son be like today. Would he love books and video games like his dad. Or would he be full of adventure and talkative like his Mama. Did you get my curls or your dad’s jet black hair. Would you have your dad’s Jewish features or freckles like mine. I often wonder what you’re laugh would sound like. The land of what it is a place to get lost in, but I know I cannot dwell here forever. So on your birthday I let my mind drift and stay a bit. Because Lucia I was always wonder who you would have been.
Some ask me how I can carry on without you and I often say; “the moment I was born my name was written in the book of Heaven. God, he has promised me eternity. And when I die I will finally get to Mother my children. Not for a short time like on earth, but for all of eternity. God’s promise is what keeps me going.”
Happy Birthday Lucia! Love you forever and always my son. Until we meet again. ❤️
I am no stranger to therapy. I am the queen of acting happy when my world is falling apart. For years my coping mechanism was stuffing my feelings in my back pocket and acting like nothing happened. This worked, until it didn’t. One day my pocket got a hole in it and my feelings fell to the floor. Every bit of my brokenness was laying in front of me, staring me in the eye and asking me to deal with it. The dealing was the hard part.
In mid April we found out that our forth and final embryo transfer did not take. We got a negative blood pregnancy test. One moment I was fine. The next I was eating sour gummy candy while crying in my bath tub. I felt defeated. I felt cheated. I was angry and frustrated that everyone else got their miracle but me. I shared my feelings with my dad and in a brief moment I realized why I am the way that I am. I am the product of his parenting.
He said to me “you do not have time for feelings. Stop it. Get yourself together and get your head in the game. Feelings trip you up. Stop it.” I heard those words a million times during my childhood. If I fell of my bike, my dad would tell me “stop crying. We don’t have time for crying.” If someone hurt my feelings at school he’d tell “you are better than them. They are trying to mess with you. Get yourself together and get back in the game.” My Dad viewed feelings as a weakness. He wanted me to be tough, driven and successful. In his eyes the successful did not feel. They instead stuffed it down, put on a happy face, and marched forward.
My Dad thought he was doing me a favor, but instead he unintentionally set me up for disaster. When the disaster came he again went into his pep talk of “we don’t have time for this, get your head in the game.” Time was something I needed. I needed time to just sit in my emotions. Time to get comfortable with the fact that I didn’t have to always be strong. Strength comes from within, it grows when we face our emotions. Therapy, therapy is what righted my course. In that small office I heard the words “AJ you can have bad days too.”
In those sessions I learned that I can take off the mask, I can share what’s on my mind and those that love me will accept the mess. I learned that it’s ok to say no. That it’s ok to put myself first. That it’s ok to feel everything that makes us uncomfortable. That it’s ok to set boundaries, to take a moment to just be and to breathe in the beauty that’s around me. That it’s ok to wave your white flag and take a nap. Naps are self care after all. Rest restores the mind, the body, and soul. It’s also ok to just be a hot mess who eats gummy bears while crying in the bathtub. No one can tell you how to process your feelings. They are yours and yours alone and only you know how to handle them.
Sometimes we loose our spark. We feel overwhelmed with defeat. It’s hard watching other people get the miracle you so desperately begged God for. God knows your journey and he knows what is to come. It’s ok to feel those feelings, they are valid and no one can tell you otherwise. Your spark is not lost. It just got smaller. Remember all it takes is one tiny spark to light the whole damn fire. Your spark will light a blaze and one day that blaze will lead someone out of the darkness. When you rise, be the blaze. Be the hand that says come as you are and be the voice they need to hear.
National Infertility Awareness Week hit differently this year. It came in quietly and then started to sting like a thousands wasps hitting my skin. TikTok was full of stories of hope and happy endings. No matter how fast I scrolled the next video would be a “I beat infertility story.” A story that I would normally cling to as evidence that my turn was coming. As evidence that God grants miracles to the weary. I’d hold their testimony like a blazing torch against the darkness. Except the darkness never broke and my miracle was not granted. God provided a way, yet he held back on the miracle.
On April 17th we were filled with so much hope and in my gut I knew our transfer took. We woke up early and drove to Mayo for our blood test. On the way home I ignored my phone. I wanted to stay in this blissful state of hope. I wanted to continue living in the land of my gut was right. One notification from the Mayo Clinic app ripped us from that land, our beta was less than 0.05, we were not pregnant. Our forth and final transfer had failed. We are the other side of infertility, the side that doesn’t get the miracle that they so desperately prayed for.
This side doesn’t get much attention as broken hearts do not create hope. If you are out of embryos and funds, you are cleared to the side to make way for the deep pockets of the hopeful. IVF is an industry just like any other, selling hope one cycle at a time. It’s a billion dollar business with little to no price regulations. Success stories sell hope and hope + success = profit. To anyone in the outside looking in I am just a mark in the failure column. Yet I am more than a mark in the failure column, I am the story of persistence, strength, and unwavering faith.
We focus so much on the positive outcomes that we forget about the grieving couples. We forgot about the couples stuck in the land of what ifs. We don’t want to discuss the couples who received subpar care or those that didn’t even get to the starting line due to BMI. IVF is not widely regulated and clinics can set their standard, because success is everything to them. Some clinics only take easy cases and turn away the complicated messes like myself. On paper I am a mess. I have complicated anatomy, endometriosis, adenomyosis, with a side of diminished ovarian reserve. I require more care than most clinics want to provide. If you don’t fit the clinics mold of quick and easy cycles you are pushed to the side to find a different clinic.
Mayo was my holy grail. A clinic that was willing to take the extra steps and loaded the deck so I’d have a better chance at success. Mayo was my 4th fertility clinic and the 1st to order an MRI. That MRI is what lead to the diagnosis of endo and adenomyosis. I had excision surgery in October to remove stage IV endo from my body and started a Lupron Depot protocol to prepare for a frozen embryo transfer. Transfer day came in February and we quickly learned that the lab somehow thawed the lower grade embryo instead of our higher grade embryo. I didn’t make a stink, I went with the flow and ok’d the transfer of the wrong embryo. I didn’t want to mess with fate and I felt that fate was a foot that day. We found out on March 4th the transfer failed and we were set for a WTF meeting on the 9th.
I met with a different doctor that day. One I hadn’t seen before. Mayo has a team approach and they supposedly discuss each case at length during lunch so everyone is familiar with all patients. This doctor wasn’t familiar with my case. I had asked for Lupron Depot, he told me it wasn’t necessary. He actually laughed at some of my questions and concerns. When I mentioned vaginal progesterone, he went on to tell me it wasn’t necessary and research doesn’t support it. When I mentioned the other doctor ok’d it he said “oh oh ok, I will write the order then.” I moved forward with the protocol because I assumed he had spoken to the other doctors that were handling my case.
On April 8th we transferred our last remaining embryo and on April 17th we found out it failed. I got a little tipsy that night and fired of an email with a list of concerns as I cried in my bathtub. I’m not proud of it, but it happens. Dr. K responded to my email that Monday and I ignored the response. I had a WTF appointment set for Tuesday and I was still debating whether or not I was going to log on to it. Early Tuesday morning I got an email from billing and that email lead me to open Dr. K’s response. Anger started to boil within me as I read the fist two paragraphs. Fuckery was a foot and I wasn’t having it, not today, not now, not ever.
The doctor I spoke to back in March told Jay and I Lupron Depot was not necessary, Dr. K said it absolutely was and recommended it for future transfers. The reason it wasn’t used this time around was because the doctor told his team that I refused the medication as I wanted to move quickly. Now I’m not an expert but “refused” and “not necessary” are two very different things. I didn’t refuse the medication, I asked about it and I asked for it. He said it wasn’t necessary so I assume he spoke to Dr. K, so I didn’t question it. I went forward on his word. All I know is if my WTF appointment had been handled by Dr. K we’d be on a different path right now. It just sucks that one doctor took it upon himself to make a decision that affected my care and compromised the outcome of my transfer.
It’s taking everything in me to get out of the land of what if’s. To get out of the land of should have, would have, and could have. I cannot go back to March 9, 2021 to advocate for myself and ask questions. As much as I want to I can’t. All I can do is move forward one very slow step at a time. I have to reimagine what this life will look like. One thing I do know is, I cannot imagine this life without children. I have so much love and patience to give to a child. My heart was made to mother. Somehow someway we will complete our family and that child will be so very loved. What’s getting me through the darkness is planning for the child I never imagined. Adventure is still out there and I know in my heart that one day we will have a pint sized sidekick by our side.
Right now I have to believe that God does not turn his back on the weary and that he heard my prayers. He heard every word, yet there was a miscommunication and my miracle got stuck somewhere in the space time continuum. Or just maybe my miracle went to someone who needed it more than I did.
She may look weary, but her logs still hold life. Built in 1937 for a sheep herder and his family. Her logs taken from this land. Hand hued and filled with promise. The stories she could tell. Her basement walls guarded the sheep by night and were filled with laughter by day. She saw the landscape change around her, a road punched through in the sixties connecting her to town. Yet she stood tall and held her ground against winter storms and spring floods. That new road caused the family to leave, town life was the life for them. So she sat empty and waited.
She sat empty from 67 until 1985 when a man with a dream came along. Though her roof had a hole, her windows were long gone, doors shot up with shot gun blasts, he didn’t see ruin, instead he saw promise. A promise to bring her back to a brighter day. In which as money allowed he painstakingly did. A new roof was put on, each broken window replaced, a new floor in the sleeping loft, and new doors were hung. This old pile of logs was forever his and she was thankful.
For he brought laughter and childhood wonder back into her rooms. Camp fires were once again lit and stories seeped into the night sky as fireflies took flight. This old home took a breath of relief for she knew this family would not abandon her. This family was different. This family needed her more than she needed them. Her old logs and fields of wildflowers provided refuge from the storm. Out here next to her a little girl’s illness melted away as she became Super Mannie and took on the days adventure. No turtle nor snake, nor toad nor salamander were safe when she was on the prowl. Her logs protected Super Mannie on rainy days as she colored and played connect four by lantern light. An old iron bed, heavy blankets and a breeze through the window lulled her to sleep. This place was hers and hers alone.
Gardens and apple trees were planted. Bikes and roller skates hung from the rafters. Rides to the creek and through the fields to pick wild flowers were aplenty. Forts were setup in the woods and lookouts on the hillside to watch out for bandits. In this place her imagination was allowed to run wild. Day dreams filled the sky as she laid in the field and watched the clouds pass by. Croquet was played on the lawn, wiffle ball in the fields, and kites stuck in trees. Trees to climb, Barbies lost and found, pounds to swim in as honey bees buzzed by. Christmas trees were cared for and cut in the fall. No matter the season, the land around the cabin was always filled with activity.
But just as she had seen before, the child she so loved grew up before her eyes. Yet this time it was different. The child didn’t go into town, this child returned every weekend to run her hands along her logs as she breathed in a sigh of relief. This place, this very place was her happy place. Tears would often stream as the memories of days gone by played in her mind. Her old fort is long gone, but she remembers exactly where it stood. The wild berries are no more yet she knows exactly where they grew on the fence line. This land is apart of her and she will always belong to her. Her Dad realized that she loved this place as much as he did. He realized that Super Mannie saw the promise too and on a fall day he handed her the deed. It was now her turn to carry on her legacy. With tears in her eyes she hugged her dad and said “I will do my best to carry her into the next 100 years.”
She has held on to that promise. A new roof was done and now a new foundation will be laid. A new chapter is being written with her third owner at the helm. It’s a chapter filled with promise, wonder, and love for the place she calls “childhood.” Yet her heart is heavy as she takes in the fresh country air, she holds out hope that one day she will return with a baby in her arms, the forth generation to love this place as much as she does. She dreams of the day that she will walk these fields with a child of her own. Oh the stories she could tell as she shows her child the best spot for catching turtles. For a log cabin like this one deserves to be filled with child like wonder. This land needs to hear the footsteps and laughter of a little one. Adventures are await amongst the pines and campfires are just waiting to be lit. This place is what childhood dreams are made of. A safe place from the outside world to just run free and be exactly as a child should be, FREE.
Last Saturday I attended the Holy Spirit retreat at my church. I went into this retreat with zero expectations and walked out of the retreat with a group of women that I now call my friends. Somewhere between the teaching and the discussion I felt moved, moved to create a podcast. God put me through struggle so that I could one day use those struggles as a testimony of his love. I’m our moments of darkness God does not leave us, he digs in deeper than ever and guides his children to the light. The struggle is where our purpose is birthed and where new life is breathed into our tired bodies. The struggle gives us Strength and it allows us to stand tall in our faith. Without the seasons of struggle, I wouldn’t be the woman I am today.
Over the years I have let people in and shared my testimony. Somehow someway my words were what they needed to hear and little by little they too were able to stand tall in their faith. I am so grateful that my story has helped others and it will continue to help others so long as I have the breath to say the words, I will raise them up to my King and help others to stand tall in their faith.
So come along with me as I share my story, my story of breaking, healing, and shining each week.
In 1986 my dad was driving through the Wisconsin country side when a log cabin caught his eye. The cabin had seen better days, her windows and doors were gone, and the roof had a gaping hole. But, her logs were strong. Where others saw a dilapidated building, he saw beauty. And he knew that he had to have her. So he sent my mon off to go find the owner. The owner was more than happy to sell the cabin to them, he needed $5,600.00 for a new pole barn. So a deal was struck and the log cabin was ours.
After purchasing the cabin my Dad learned that it was built in the late 1920s for a sheep herder and his family. The basement is a dirt floor and that is where the lambs and sheep were kept on stormy & winter nights. The family lived on the first floor and utilized the sleeping loft. They lived in the home until they moved to town in the 60s. And there she sat, she sat empty waiting for her new owner. Slusher purchased the 300 acre parcel somewhere in the 70s and had no interest in the cabin, so she sat empty. He rented out the land to Mr. Bathel a Christmas tree farmer and to Mr. Smith a Bee farmer. Eighty acres across the road was sold to a Postal Carrier from Saint Paul and he built a little cabin down by the creek. He was our only neighbor.
When I was a little girl the son of the sheep herder would bring his family and friends down to see where he grew up. He often shared pictures and stories with us. He was thankful that someone was working on restoring the place he once called home. He was glad to see that a new family was making memories in the logs that once protect him.
This cabin of ours is a magical place. Its a place of healing. When I was little I was sick. Being in town meant that our world revolved around doctor visits, tests, medication, and pitiful looks from strangers. I couldn’t even play with the kids in my neighborhood or go to school. I was homeschooled by Ms. Ann and played dolls with my next door neighbor Ms. Cora (she was my 90+ year old best friend). Every once in a blue moon they’d let me go to Sunday school, which was a real treat. As a child I didn’t understand that they were protecting me from getting sicker than I already was. It was torture not getting to be a normal kid. But, as an adult I realize that they gave me an escape, they gave me something most people never have.
My Dad bought a second home, a summer home without electricity or running water. He bought a place where his daughter could truly be a kid. I was allowed to explore and dream. These woods that surround the cabin entertained me for hours on end. These old logs over heard scary stories and jokes told in the dark. Her old logs sheltered us from stormy skies as we played board games on the living room floor. And with time her logs healed a sick little girl and her family. She allowed them to dream again.
It’s more than logs, the land the cabin sits on is magical. The woods were my playground. I often could be found picking strawberries, mixing potions, “hunting bad guys,” playing in my make shift fort, or just laying in a field of wild flowers calling out shapes in the clouds. When my parents weren’t looking I was known to capture an unfortunate toad, frog, salamander, or turtle in my bucket. Somehow my dad always knew, he didn’t even have to look at me and I’d hear him yell “Mannie! You better put that critter back where you found him!!” Snakes? I wasn’t afraid of snakes. I was fearless as a child and my dad had to teach me about poisonous snakes in order to keep me safe. If a snake crossed my path it was a guarantee I’d pick it up and put it down the back of my sister’s shirt. I’m pretty sure I am the reason she has a fear of snakes. I am probably the reason for her fear of the dark, dead fish….. and many other things in life. And yes, she deserved it, she’d cheat at board games and violated my Barbies by cutting their hair. As we grew older we grew apart, she lost interest in being my sister and in her eyes the cabin lost its magic.
Even though the magic faded for her, it grew and grew for me. We are not the only folks who love the land the cabin sits on. As I said earlier Mr. Slusher rented out the land to local farmers. As a child I’d watch Bathel and his crew expertly care for, trim and spray paint the Christmas trees that would be sold in the fall. Yes, believe it or not Christmas trees are spray painted…. that’s why you sometimes get a tree where the needles fall off as soon as you get it home. It’s a pretty neat process to see in person. Anyways, Mr. Smith tenderly cared for over 20 hives and he’d tell me “now Mannie, don’t kill the bee. The bee doesn’t want to sting you, he just wants to get back to the hive.” He taught me to respect the honey bee and to this day I find myself telling people “don’t kill that bee! He just thinks you are a flower. Once he realizes you aren’t, he will go on his way.” It’s true, they will. My Dad used to have an orchard on the land. I’d spend my summer days following him from tree to tree with trimmers in my hand as he patiently explained the delicacy of grafting. When we weren’t trimming or grafting, he made me carry 10 gallon buckets of water up the hill to thirsty little trees. He said “it will teach you character….” I don’t think it taught my character, however I did have really strong arms for a 10 year old.
Sunset is my favorite time at the cabin. My Dad calls dusk “God’s magic time,” because each sunset is a beautiful painting to remind us that life goes on. I spent my summer nights sitting by the fire roasting marshmallows while watching fireflies dance in the darkening skies. We’d tell stories about UFOs and aliens as the foggy mist rolled in through the trees. The sound of bullfrogs singing, crickets chirping, and wind rustling the leaves would lull me to sleep in the old iron bed. I’d dream of another day at the lake and rescuing turtles from the road. The smell of the fire would stir us awake, the morning mist dissipated through the trees as our feet touched the wet grass. Breakfast was always fried potatoes and some sort of meat, if my Mom was there we’d get pancakes + fried potatoes + meat. Breakfast always tastes better when eaten outside under the old oak trees. Those are days that I will always cherish for as long as I have breath in my body.
Speaking of body, this little log cabin of ours is no match for the test of time. She was built back when we knew little about concrete and her foundation is crumbling. Her logs are good, but her base has seen better days. My dad guarded me from her fate all summer long and told me over and over “I can fix it, I just need some materials.” When I laid eyes on her, I knew that this wasn’t a project for him. We needed help. We had to map out our options and attach cost to those options. We needed to make the decision of do we save her or do we let her go?
We chose to save her. All roads pointed to one contractor, we are bringing in Heritage Builders from Menominee WI to restore her. In the spring of 2021 she will be lifted, her old foundation will be removed and a new one will be put in its place. Once the foundation is completed the Jacks and supports will be removed one by one and she will be sat on her new foundation. This project terrifies me. One wrong move and we will end up with a pile of Lincoln logs. I know our log cabin is in the right hands, Troy from Heritage Builders immediately saw what we see, he saw the gem. The gem that my dad saw all those years ago, the one painstakingly brought back from ruin to life.
I know in my heart God is making a way. This land, this house is my Dad’s heaven on earth. And he gave her to me, he’s trusting me to carry her on to the next generation and beyond. We pray each day that this cabin of ours will hear the pidder patter of little feet within her walls again. That scary stories and laughter will once again ring through her rafters. This log cabin craves life and life is what we will breathe into her.
Because she breathes life into my Dad and makes his soul sing. This log cabin of ours will be where my Dad’s soul rests. As his daughter I made a promise to ensure that her log walls are his final resting place. I will honor that choice. When the time comes his ashes will be placed in an old ceramic Indian whiskey decanter and tucked up in the rafters to watch over the place he loved most in life. And I will spend the rest of my days caring for and protecting his Heaven on earth.
A part of me wants to be mad at the first three fertility clinics I went to. Like someone along the way should have picked up on the fact that I might possibly have endometriosis plus a side of adenomyosis. Yet no one did and so they shoved me into their one size fits all protocol box. In which in their defense my numbers always looked great so their one size fits all approach worked.
It worked until it didn’t. In Iowa I cycled two times and both were canceled prior to our retrieval date. Dr. Young’s last words to me were “if anyone can get you pregnant, it’s Mayo.” He’s words soaked into me like water to a sponge. Yet I never picked up the phone to make an appointment with Mayo. Instead we explored our options such as foster to adopt and donor embryos.
By the fall of 2019 I had my heart set on donor embryos. I was ok with carrying someone else’s genetic material to term and calling that baby my own. But my heart she still whispered “let’s try one last time. One last time.” My gut gave me the courage to call Mayo for a consult. And on an icy February morning I drove down to Rochester and never looked back.
Mayo takes a team approach to infertility treatments and therefore you need enough of the team to believe in your case in order to proceed. The day of my consult the majority of the team was at a conference and I wouldn’t find out if I was accepted until I got back from my cruise. We did everything on the cruise to keep my mind of Mayo and it worked. Sherri and I had a blast aboard the Carnival Victory. And we soaked in the sites of Key West and Cozumel. It was a trip that I will always treasure.
When I got back the Doc from Mayo called me early Monday morning to tell me that I had been accepted. As fate would have it the university of Iowa called a couple hours later to tell me that we were next on the donor embryo list. That night jay and I weighed the pros and cons. We prayed and my gut told me that Mayo was the answer.
Enter Covid and all of our appointments got postponed. Which was fine by me, people needed the PPE and doctors more than I did. In May I had a pelvic MRI done and was at that time diagnosed with endometriosis and adenomyosis. Dr. Khan could also see plain as day my complicated anatomy on the screen. He explained that we could do surgery now or wait. Wait because if my ovaries had to be cut open I’d loose what little egg reserve I had left.
I chose to wait. In July we did one last Hail Mary retrieval cycle and ended up with two high grade embryos. Which I am still trying to wrap my head around the fact that I have two embryos in the freezer. The team at Mayo was just as excited as we were and they were so glad that we were able to freeze embryos.
Anyways back to the endo, I had my surgical consult at the end of August. During my consult Dr. Khan was once again very thorough and he explained everything to me. He laid out the options and the plan and like before he gave me choices. Hard choices like “if your Fallopian tubes are diseased is it ok for me to remove them? If removed you will be infertile.” Well according to medicine I am already infertile so I said yes to that option. I walked out of his office knowing that we had a solid plan and that one day soon my body would feel so much better.
Surgery day came sooner then I thought it would. The date it just sneaks up on you and before you know it you are in the shower with antibacterial soap that makes your skin itch. My surgery was delayed by 6 hours due to the case prior to me needing more time. I was fine up until hour 5, my hunger and thirst set in and I’d do anything for water. Thankfully a nurse took pity on me and gave me a little bit of water. Soon it was my turn to go down to pre-op. Where when I saw Dr.Khan I asked “did you forget about me!?” He said “how could I forget about you AJ. You are one of a kind.” He once again went over the plan and even the changes he made. He decided it was best to leave the adenomyosis alone because cutting it out of my uterus could cause more harm than good.
Five some odd hours later I was backup stairs in recovery. I do want to add that the post op recovery unit closed at 9PM. Two nurses whose names I did not catch stayed late so I could go home to my own bed. The nurses I had were incredible. They made sure I was able to walk on my own. One nurse helped me get dressed and made sure we had a barf buffet cup (it’s a bucket filled with wipes and Kleenex) to go home with. The nurses wheeled me down to the pickup zone and waited for Jay to bring the car over. On our way down I kept apologizing to them and they both looked at me and told me it was ok. “This is our job. We love our job. We’ll go home tonight and do the exact same thing again tomorrow.” They both gave me a hug and helped me into car and we waved goodbye as we drove off.
There is something about a Mayo Clinic nurse. They truly have a servants heart and away with people. I was always amazed by my Dad’s nursing staff and now to experience it on my own, he’s right when he says “they are the best of the best.” It’s true they are and I am so thankful for the care I received from my recovery nurses.
Rochester is 75 bumpy miles from Burnsville. And I felt every bump HWY 52 had and I’d never been happier to turn into our little street. We got home after midnight and that first night was pretty rough. French fries were a bad idea…..(I’ll leave that for your imagination). But butter toast saved my tummy along with some oxycodone and a little bit of sleep. You don’t realize how much you use your core and pelvic muscles until they are cut open.
Speaking of cutting, Dr. Khan diagnosed me with stage IV endometriosis and an ASRM score of 76, which in normal human terms means, really bad. He told Jay I had one of the worse cases he’s ever seen. Which is strange because I never showed symptoms, my endometriosis was the silent yet naughty kind. He removed endo from my pelvic cavity, abdominal cavity, colon, rectum, ligaments, ovaries, uterus, and a whole lot of other spots too. It’s crazy to me how much damage was done to my body every month and that this had gone undetected for years.
When I think back to the first three clinics, two out of the three saw dollar signs. Especially CCRM Minneapolis, Dr. B claimed to be an expert, yet she missed a lot of fucking red flags. And her arrogance didn’t allow her to seek outside advice on my case. Her kicking me out of the clinic lead me to Iowa. In Iowa Dr. Young did his best to help me, but at the end of the day I was to complicated for him. And I respect his walking away from my case and sending me off to Mayo.
If it weren’t for Dr. Young’s words I’d never would have gone to Mayo. Mayo’s tag line is “when you are ready for answers.” It’s perfect, I was ready for answers and I got answers and explanations to everything I’ve gone through in the past five years. One MRI sealed my fate and now knock on wood I will be living endo free for a long ass time. And with just a little luck and a whole lot of faith I will get to carry our embryos to term.
The lesson I learned in all of this is…. listen to your body. Do not give up on her and keep searching until you find a doctor that will really listen to you and not throw you into the one size fits all box. You are unique and you deserve the very best care. Everyone deserves that. So if you feel you might have endo, go talk to your doctor. And if your doctor doesn’t listen go find one who will. Because living with endometriosis shouldn’t be a death sentence, it should be a piece of your story.
In April I got a call that no child wants to receive. A call from my mom that my dad was in a head on collision. Those words were all I needed to hear and I was headed to Red Wing.
In my heart I knew it was useless because due to Covid no one, but the patient was allowed in the ER. While on my way a nurse called to ask me some questions about my dad and she said she needed me to come in and talk to him. I asked her why and she said “the doc will explain everything to you when you get here.”
On the surface he looked like his normal grumpy old self. He had some bruises and scratches, so to me he seemed ok. Then the doc came in and started explaining his Troponin level was off the charts and that he needed to be sent down to Mayo.
I stood by and watched as the EMTs loaded him up and rushed him away. It broke everything in me knowing that I could not follow that ambulance to Rochester. I could try, but there was no way I’d get in. So I did what my dad always says to do in a time of trial, I prayed. I prayed that he was going to be all right and I headed back home.
My dad had his second sudden cardiac arrest. This time it was while he was driving home from our cabin with Ruby (his trusty dog. Ruby did not sustain any injuries in the crash, she walked away unscathed to chase a turkey for another day). The Doctors figure the impact of him hitting the airbag/steering wheel restarted his heart. There is nothing they can do to prevent it from happening again. So we decided to live life, to live a full life because the next time it happens he might not walk away.
In June we had planned to go to Yellowstone, I had to move our trip to September due to his accident and Covid. September finally arrived and I was excited to get this trip underway. This was his first time on an airplane. As the plane lifted I looked over to see him in his seat pretending to fly the plane. I could feel the tears welling up and I fought them as hard as I could. It was in that moment the reality of our summer sunk in. I could have easily been traveling to Yellowstone alone.
It made me realize that these Daddy/Daughter trips will not go on forever. As much as I’d like time to stop, I know it has to end eventually. And that I as his daughter need to fill whatever years he has left with adventure and make memories. I want to have stories that I can tell to my children. Hell I want to be able to take my kiddo on trips with their grandpa, so that they can have stories to share.
In the end when the drip finally stops, all that is left of us is our stories. And I pray that you have people in your life who will continue to tell your stories when you are gone. Charlie used to tell me that “date of birth and date of death don’t matter on a tomb stone. It’s the “dash” between those dates that matters. Some of us chose to die while living and others my friend, they live while their dying. Your dash is your story, it’s the nuts and bolts of a life well lived or a life well mourned.”
Somewhere between the ghost towns of Montana and the valleys of Yellowstone, I added to my Dad’s dash. He kept saying over and over “I never thought I’d see Yellowstone. This is a trip of a lifetime.” he was right, this was a trip of a lifetime for him. We set out for Yellowstone in 2019, but only made it to the entrance due to car trouble. We vowed that day to come back, to come back and finish what we started. When I parked in the exact spot our trip ended in 2019, my dad looked around and looked at me and said “We completed our task!”
Indeed we did and all I have to say is Yellowstone is beautiful beyond measure and the mountains of Montana speak to your soul like no other place can. I would take this trip with him a million times over, including the tiny cabin with a broken heater that we stayed in.
If you have a dad don’t take your time with him for granted, for he is not immune to growing old. Take the time today to start making memories. It doesn’t have to be some grand trip, it could be lunch or even just a walk in the park. Memorize his every word so that one day when he is gone you can pass his stories on. Even the highly inappropriate stories. Even the ones that make you cringe a little. When he is gone from this world his words will matter and you will be thankful that you have them to keep you company.
And as for my dad, I thank God every darn day for his third chance at life. I could not imagine this world without him and travel just wouldn’t be the same. He is and will always be my road trip buddy.
Ten years ago I woke up and made a decision. A decision that was months in the making and one that needed to be made for my own sanity. I chose to leave. To walk away from a marriage that wasn’t worth saving and said goodbye to a child that I will love until my last breath.
Only a handful of people knew about my situation. Most thought I had the perfect storybook marriage. I had the big house in an affluent community, money, travel, and a husband that adored me. In reality my husband only adored me in public, my big house became my prison and the money only flowed one way, his wallet. Day in and day out I was told that I wasn’t good enough, I wasn’t thin enough, smart enough, or pretty enough to be loved. Those words cut into my soul and my mind believed them as truth. After awhile I no longer recognized the woman in the mirror and my laugh disappeared. Smiles rarely showed and my light hearted manner slipped away. He broke me in more ways than I could ever explain.
I never correlated what I experienced with abuse. Until I started therapy. My therapist looked at me point blank and said “Hun, that’s not normal. You went through mental and emotional abuse.” All I could say back to her was “Umm what?” She explained that he used manipulation and gas lighting to break me down. To make me feel like I was less than and that if I ever left him I wouldn’t survive on my own.
His last words to me were “you will never make it on your own.” Those very words have been my fuel. I’ve been fighting to do better and be better because I couldn’t let his last words win. It took awhile but I slowly found myself again. At first tears were plentiful. I felt like a failure and having to start over at 27 was scary. I got my first apartment, learned how to pay bills (no side eyes, the ex had done this for me), and I adopted a muppet like dog. And I never looked back. I was determined to make it on my own.
And when I was ready I dipped my toe into the dating pool. It took awhile for me to realize that his words were false and that I was indeed beautiful. To this day I can remember the first time after my divorce a stranger told me that I was beautiful. It was in the uptown Green Mill parking lot and I cried. I cried because it was the first time in over a year that someone uttered that word in my direction. I left that parking lot with a new found confidence and my grove was back.
Dating as a young divorcee is hard. I kept my guard up and my hope close to my heart. I just wasn’t going to settle for anyone that slid into my DMs. I was picky and there were times where I didn’t even show up to the date. Yes, I AJ ghosted people and that’s ok. Sometimes you just don’t feel like it or maybe you got lost and you didn’t want to be super late. Anyways dating is hard, like real hard.
I didn’t spend a lot of time in the pool, Charlie came in and threw me a life ring. Charlie was able to peel back the layers and heal the years of hurt. In his eyes I was everything and nothing would ever change that. Sure he was 13 years my senior, yet the difference didn’t matter. He’d tell me often “AJ do you know why we work?” I’d tell him no. “You understand the work. You understand that an Attorney doesn’t always work a 9 to 5. You understand that sometimes a case comes before family. You understand that sometimes I have to be away for weeks at a time and because you understand, you are ok with it.” He was right as a paralegal I understood the work and all of the late nights and long weekends that go into a case. I never complained or batted an eye when he stayed in the office till 1AM. He was right, because I understood the work we just fit.
That fit was short lived. And my heart to this day still hurts. Charlie died on February 16, 2012 from injuries sustained in an auto accident on Valentine’s Day. His life was taken by a drunk driver. A driver that I have forgiven. He made a mistake and like me he has to live with the consequences of his mistake for the rest of his life. Charlie was a once in a lifetime love. His soul was vibrant and his personality could fill a room. He knew how to make you smile in the worst moments and roar with laughter. To calm me Charlie would tell me stories in Mohican and with each word whispered I’d forget what I was fretting over. Charlie looked out for everyone and lived life to the fullest. A piece of my heart lies in a little cemetery in Montawk and because of that I strive to live the life Charlie had imagined for me.
After Charlie I took time to let my heart heal and when I was ready I dipped a toe back into the pool. Dates were plentifully, but only a few had long term eligibility. After awhile I just gave up and decided that the single life was the life for me. I had a good job, a cute apartment and a muppet like dog. Life was good and I was happy. But fate, she’s a funny lady, Fate had other plans for me. On Veterans Day 2014 a marine slipped into my DMs and I’ve never looked back.
It hasn’t been easy. We’ve had our trials and our triumphs. We’ve gone through more than most couples do and we’ve come out on the other side stronger than before. He gets me and I get him back. Jay believes in my crazy dream of motherhood. Jay doesn’t like the limelight, he prefers to be in my corner where he can cheer me on from the cheap seats. He answers to every whim of my wanderlust heart. Jay gets my Tasty Taco addiction and my need for adventure. If it’s out there and if it won’t kill me, I want to do it. But mostly Jay is what my heart always needed, he can make me laugh until I can’t breathe, he can calm me when I’m out of sorts, he knows that the simplest things make me happy, and he always makes sure the bed is made. (Having a made bed is everything to me) He is a good egg and I am never letting go. Well that is unless he declares that he hates dinosaurs and fluffy white dogs, then I’ll let his ass go. I can’t have that negativity in my life 🙃.
Looking back now I realize that my divorce wasn’t a failure, it was my launching pad. I’ve done a lot of amazing shit in the past ten years and none of it would have happened if I stayed in that marriage. I wouldn’t have worked as a contract paralegal hopping from case to case. That job eventually led me to my niche, I’m a Risk Consultant and it perfectly fits me. It’s a mix of law/regulation review and procedure/policy analysis, which is my jam. I never would have done the best thing ever…….. duh adopted a muppet like dog! Cullen has been my side kick for almost ten years, he is my joy in four legged form. In the end I am the one who got rescued on adoption day. Nor would I have a shit ton of travel stories to share. My life would have been boring and sad. And ya all know me, I may be a lot of things but boring and sad isn’t one of them. This life I’ve built and rebuilt and rebuilt again, is fucking amazing and I wouldn’t change any of it. Life is a beautiful disaster and this disaster is all mine.
From time to time people ask me for advice. Like relationship advice, yes you read that right, relationship advice. And when I respond I think back to what Charlie said “you need to find someone that understands the work.” He was right, at the end of the day you need to find someone who understands the work and understands you as a person (<—- last part is my two cents). Otherwise your relationship isn’t going to work. Things will happen in your relationship that neither of you signed up for, it’s what you do with those things that matter. If those things break you apart and that break is not repairable, it’s ok to walk away. You did your best, you gave it everything you had and now it’s time to call it. A wise attorney once told me “there are no winners or losers in a breakup or divorce, someone has to call it. That’s the hardest part, making the judgment call.” <—- I heard this advice on a Friday and walked out of my marriage that Sunday and then never looked back. Best advice I was ever given. So if you are where I was ten years ago, just call it and never look back. Your launching pad is waiting for you.
Every IVF cycle I started was filled with hope until the seams started to rip and disappointment seeped it’s way in. Positives were met with negative outcomes. Yet somehow in the darkest moments I still clung to the tiniest shred of hope that my turn would come. That I too would get to carry a child. That I too would finally get to be called “mom.”
As the months rolled on it looked less and less likely that motherhood would be in my cards. I racked up a list of failures no one wants to have. One still birth. Two miscarriages. Three failed IUIs. Three IVF cycles, two of which were canceled due to poor response. The words “gestational carrier” were uttered last spring and I began to look at door eggs/embryos and adoption as my options for motherhood. Yet my gut thought otherwise and she made a Hail Mary appointment at Mayo.
My heart wasn’t ready for Mayo. She had her mind set on donor embryos in Iowa. Yet she entertained her gut and heard her out, because it doesn’t hurt to just see. To just see what Mayo had to say about their fertility. Turns out, I still have viable eggs and all of my hormone levels are on point for a 37 year old woman. Though the odds are terribly stacked against me, Mayo still approved me for treatment.
Unlike the other clinics, Mayo left no stone unturned for they understand this is my last shot at motherhood. For the first time on my journey a pelvic MRI was ordered and the results spoke volumes. I always felt like I might have endometriosis and/or an underlying issue with my uterus due to a 2010 perforation. The other docs dismissed my concerns and told me “research doesn’t support an impact on fertility, you will be fine.” But I wasn’t fine, my body was silently screaming for help and no one listened to her.
I met with Dr. K who specializes in endometriosis removal to go over my MRI results. He first showed me what my fucked up cervical canal looks like and then asked “are you ready to see yourself light up like a Christmas tree!?” He was way more excited about it than I was. He clicked to the next imagine and said “all that is glowing is endometriosis, you have one of the most severe cases I have ever seen.” The endometriosis is wide spread as it is in my abdominal & pelvic cavities. He went on to explain that if it was just the endometriosis he would be in support of me going through with IVF. My heart sank and I was thankful for the mask so he couldn’t see my expression.
The endometriosis wasn’t the worst of my problems. Adenomyosis was my new enemy. Adenomyosis is where the uterine lining growing deep into the muscle tissue of the uterus. It turns the tissue into a cork like consistency and makes it harder for an embryo to properly implant. He went on to explain that embryos that implant in a uterus with Adenomyosis tend to have smaller placentas and poor blood flow to the placenta. My heart sank again, our sweet Emmett’s demise was due to a smaller than normal placenta for his gestational age. The poor kid never had a chance, the embryo most likely landed on a spot of Adenomyosis.
I asked if the Adenomyosis was something new. My heart had to ask that, it needed to be reassured that this wasn’t the cause behind Emmett’s demise. Dr. K said “no this isn’t new, it most likely resulted from the 2010 uterine perforation. I died inside, The previous clinic had transferred our embryos into a toxic environment. Dr. K went on to explain that I was lucky because the Adenomyosis was localized and the bad spots can be cut out. This was good news to me, all be it risky, it was good.
Dr. K was extremely detailed when he explained both the Adenomyosis and endometriosis surgeries and what my odds of a successful pregnancy are. Dr. K explained that I should consider doing a retrieval cycle fist as I have diminished ovarian reserve and during the surgery he will need to cut open my left ovary to remove a few endiotomas which will cause my follicle count to plummet. After he gave me the bad news, he did something no other doctor has done before, he said “now it’s time for AJ to call the shots. People have made choices for you in the past. We are not going to do that here. You dear are in the drivers seat and we are here to help you get to your destination.”
I about cried. It’s true I’ve never had a say in my IVF treatments before. It’s always been “you will do this and that’s it.” In my gut I knew there was only one option so I uttered, I want to try with my own eggs. Can I do a retrieval first, freeze whatever embryos we get, and then do the removal surgeries? “YES! That is a wonderful plan AJ, I like how you think.”
I left that day with a renewed sense of hope and a tiny ping of anger in my heart. Mostly I’m angry at CCRM. Angry because they noted in my chart “suspected endometriosis” and did nothing to investigate it. All of this could have been taken care of in 2017, who knows maybe I’d have my mini me by now. I cannot hold on to anger for long, as anger harbors stress. I let myself feel the anger and then I let it go. Emmett would want his mama to do that, to let that shit go. I don’t have time for grudges. I have no hard feelings about Iowa, at the end of the day I was to complicate for Dr. Young and the last words he said to me were “if anyone can get you pregnant it’s Mayo.”
Mayo is our fourth clinic and I finally feel at ease with the care I am about to receive. Knowing that I have a hand in the treatment makes a big difference. This is our Hail Mary, we have a lot riding on this retrieval cycle and I pray to everything holy that we end up with viable day 5 embryos that lead to a baby in our arms.