I have mixed emotions this October. My heart she is filled with hope, but my soul she aches for the two babies she didn’t get to keep. I also ache for those mamas who heard the words “I’m sorry but you can’t get pregnant again.” I’ve heard those words, those words didn’t sink in until I exhausted all of the experts. Each one said no and each one said a natural pregnancy was a slim chance. Baby E was my slim chance, God he had other plans, and my baby went to heaven to be with his brother. Baby E had to many chromosomes and wasn’t meant to be ours, yet my baby you will always be.
Lucia, my sweet Lucia was my silver lining to a very dark storm. He was a surprise, April Fools day 2010 I found out he was on board and I loved him from the first scan. However the love that I had for my son could not bring him back from Heaven’s grasp, so I said goodbye and mourn his absence. Lucia should be in First grade this year, maybe he’d be playing peewee football or take up the cello like his mama. My heart was cheated and it forever aches for all the moments that could have been. My son he will always be.
Lucia & Baby E will always be a part of me, because two pieces of my heart rest in heaven. #OperationTakeahome baby is not and never will be a replacement for my children. He or she will grow up knowing that two babies came before them and that mama fought like hell to get pregnant so that they could be here. Part of me realizes that if both my babies had survived I would not be going through IVF. This journey, we never know where it will take us. Because my babies died, because my body never reset itself, I am going through IVF.
All of the loss and heartache I have endured have lead me to this moment. I am grateful, because in the loss I found beauty, in heartache I found strength, and now I have hope that our take home baby is just around the corner.
I am STILL a mother, I am an IVF warrior. My heart she may be broken but she is ready.
Somewhere in this country a woman is experiencing the worst day of her life. She is in pain, she is scared, and she will never be the same. In the coming days, weeks, and months she will learn that her birth control was the cause of her worst day. That her birth control caused her stroke or heart attack or blood clot or pulmonary embolism. She knows it was her birth control because she survived. Many families never learn why their wife, mother, daughter, sister or friend suddenly died. They live their lives only knowing that she is simply gone.
Gone. If it were not for my fast acting care team, I would be resting in a little urn on a shelf. My mom literally came this close (shows fingers) to picking out my urn instead of my 27th Halloween themed birthday cake. I was lucky, I was the 1 out of 5 who survived a massive pulmonary embolism with infarction that lead to a stroke. Because of research I saw my 27th themed Halloween birthday cake, it had a jack o lantern on it and it was perfect. I survived my worst day possible.
I was weak, I felt cheated, and I was angry that my life was gone. I had to learn how to live in a new normal of Lovenox injections, INR draws, warfarin sodium, to many pills to count, doctors appointments and CT scans. I wasn't living the life of a 27 year old, I was living the life of someone much much older. Yet it was my life to live and I had one choice: "survive or give in." I chose to survive.
Survival is not perfect. This second chance I live is pretty fucking messy and hella awesome at the same time. I put on a red dress and never looked back. The American Heart Association gave me a platform to share my story, they put the voice back into the survivor and Now my story is saving lives. I meet women who come up to me and say I heard your story and I decided to talk to my doctor about my risks and what birth control is safe for me. That right there makes my little heart sing. I can't go back and change my story, but I can share mine to change someone else's story.
We know that my massive pulmonary embolism with infraction and stroke were caused by my hormonal contraceptive, but we don't know why. At the time I was healthy, I did not smoke, I wasn't over the age of 35, I wasn't over weight, yet it happened. Further testing showed that I was negative for Factor V along with a whole host of other genetic conditions that lead to clothing. I was genetically perfect, yet some how some way it happened to me.
If scientist can figure out why it happened to someone it shouldn't statistically happen to, we can stop it from happening in other women. In order to find that why, we need funds for research. The government is the largest financial contributor for medical research and if those funds get scraped my why goes out the window. The ability to save thousands upon thousands of lives goes up in smoke. You and I we can make a difference, reach out to your congressman & women and tell them that you support the funding of medical research. Come to the MN capital on Saturday @ 1:00PM central time and stand with us as we rally for medical research. Bring a poster, yell at the top of your lungs and make a difference, help us secure our healthy tomorrows.
Mostly let's face it, without research we are dead in the water, our doctors are only as good as the researchers who stand behind them and without them we have nothing.
In February we focus on women’s hearts. But this month isn’t just for me, it’s for my Daddy too.
15 years ago I was in college in Ladysmith WI, I called home to talk to my Dad. My sister answered, she said “he’s sleeping.” I pleaded with her to wake him up so I could talk to him. She was persistent and uttered “Dad isn’t here, he’s in the hospital.” My heart sank and I hung up.
When I finally go through to my mom she told me it didn’t look good. His heart was sick. I took to my knees and prayed with every fiber I had. I asked God to spare my father’s life. At 19 I couldn’t imagine a world without my father. I needed him at my side to tell me that this to shall pass. My rock was fading and all we could do was fucking pray and wait.
When my dad arrived at Mayo he had a survival score of “zero.” His heart was beating so fast it just fluttered in his chest. Congestive Heart Failure and aortic fibrillation was to blame. The doctors prepared my Mama for the worst. She lied like all mothers do and told us he was going to be alright. I was a mess and couldn’t think straight in class. My body was in Wisconsin but my heart was in Minnesota.
Two weeks later that zero walked out of the front doors of Saint Mary’s and he never looked back. Today February marks his 15th survuvior anniversary. With every beat of his heart he steals time from the sandman and keeps death at bay. We know each day isn’t spoken for and that only the good lord knows if we will see the next sunrise. He lives with faith in his heart and appreciates every second of his borrowed time.
Borrowed years are a gift. My father has lived to see his daughter graduate from college, he was the proudest father in the arena. He walked his daughters down the isle and held me as I cried into his should on the day I found out my son had died. He’s picked up the pieces after our divorces and was the glue that our hearts needed. He stood by my side as I fought for my life and put his arm around me when we found out that I inherited his heart. I’ve watched him hold his second and third born grandchild for the very first time while morning his first. He is the ultimate road trip companion and dinner buddy. As long as a ride is involved he’s game.
Borrowed time is all but rosy. My father looked on as doctors fought to save my life. Blood clots are no joke and strokes they are even worse. He taught me how to inject myself with blood thinners, “make sure you clean the area real good” he said. Little by Little I got stronger and I never looked back. My dad’s face lit up when he saw me on a billboard and in a TV commercial promoting heart health. He tearfully watched the video of my speech in DC, his surviving heart was so very proud. Those teary eyes looked on as I strutted down the runway and shared my story at the fashion show. All because his heart, it saved mine.
My father’s heart saved mine. If it weren’t for his broken heart I never would have gotten involved with the American Heart Association. If I hadn’t gotten involved I would never have learned that women have different symptoms than men and that cardiac events can happen at any age. In one moment I became the very surivivor I advocated for and I’ve never looked back.
Because of my father I am alive today. Because he lived, his heart saved mine. Because of his heart and the research they are conducting my future looks fucking bright. I’ve followed in my father’s footsteps, he was 50 when his heart gave out, I am 34 and I am not afraid to tread down his path. For I know having high levels of C-reactive protein is no longer a death sentence, it allows us to go boldly into the night and wakeup to a beautiful painted sunrise.
The Go Red campaign focuses on women’s heart health which is the number one killer of women. I suffered a stroke, a stroke that came after my pulmonary embolism was discovered. Sure a blood clot is not a cardiac event, but it still is an event. An event that only 1 out of 5 survive.
If you ask me those odds are shitty. Fuck only one out of five people who have a P.E. will survive. That statistic is one I cannot escape and it haunts me to this day. I am the ONE out of FIVE. I’ve lived seven borrowed years on this earth and I’ve done my best to make every second count. I cannot undo the events of October 2009, I can only move past them.
Five days before my 27th birthday I drove myself to the ER. My chest felt like it was being split open and I could barely breathe. I collapsed as soon as I got inside and woke up to a nurse telling me “well you are not having a heart attack and you can either help me take your clothes off or I can cut them off.” I opted to help. I was confused and gasping for air. Every breath I took ripped through my body. I’ve never been in labor but I imagine the pain I was feeling is on that level. The ER doctor told me that my oxygen level was below 50% and he was leaning towards an infection in my lungs. He was going to run some tests. As he headed toward the door he stopped and asked “are you on a birth control?”
I uttered yes and he explained about the d-dimer test and that it checked for possible blood clots. He was certain it wasn’t that, he just wanted to check to be sure. The lab came in and took my blood. It would be a bit before the results came back. As I was being taken to x-ray the Doctor stopped us and stated “put her back in her room she doesn’t need an x-ray.” I thought this meant it wasn’t serious and I was on my way home. He calmly explained “the d-dimer came back positive. We need to do a CT scan to look at your chest to check for any blood clots. The contrast dye if you are allergic to it it could kill you. But it’s your best option.”
I looked at him and said “I might die either way right?” And signed my name to the consent form. The Radiology Tech said it would take about an hour for the results to come back. I waited and listened to the clock tick the minutes away. Thirty minutes went by, I heard a phone ring and the doors voice in the hall. I only made out “shit! You have to be kidding me!” Followed by a page for extra staff to the ER. Then I heard foot steps, lots of them running towards my little room. The doctor popped in and explained “you have a pulmonary embolis.” I stared at him blankly and he explained “you have a blood clot the size of a ten cent gumball blocking the valve from your left lung to your heart. Blood and oxygen can’t get through.”
Those words were a lot to process. In that moment I did not fully comprehend the shit I was in and how bad it was. He explained I needed blood thinners and that I would be in the hospital for a while. He stepped out for a moment to put in RX orders. And that is when I lost my words. My body felt strange, it felt like I was sinking and I couldn’t get my words out. The heart monitor started beeping and everyone was frantically moving around. My blood pressure was well above 200 and I was fading. Clot busters, TPA to be exact were ordered and given, my stroke was stopped right in it’s tracks and my life was spared. I live with the knowledge that I almost died 5 days before my birthday.
I became accustomed to my new life. A life of blood thinners, scans, diet change, and never ending doctors appointments. I was angry and bitter. I wanted to put a why behind the how. I wanted to know why this happened to me and how I could prevent others from enduring my fate. To this day the answer is still hard to swallow.
Truth: my pulmonary embolism and stroke were 100% preventable. The blood clot was caused by the progesterone in the Nuvaring, my birth control. One week before this occurred I had my annual check up and I told my doctor that I was feeling unusually tired, had redness and warmth on my upper leg. She ignored my symptoms and told me “oh just go home drink some water and walk more.” Since she didn’t think anything of it, I didn’t either. Boy was I wrong. I now know I had all of the classic signs of a potential blood clot and that a simple d-dimer test could have caught the clot before it reached my lung and brain. My whole ordeal could have been prevented if only my doctor had truly listened to me that day.
I go Red for women’s health. All of us need to realize that we know our bodies better than anyone. We know when something isn’t right and we need to listen to our guts. It’s time we put our health first and push for the answers that we need. Our symptoms are and will always be different from men, because hello we are not men. It breaks my heart to know that young women are often dismissed. We shouldn’t be, blood clots, heart disease and stroke do not know age and they can occur at anytime. Love yourself! Make a doctors appointment and make sure you are being heard. If one doctor won’t listen keep on pressing until you find someone who does. You only have one life, one heart, and you deserve the very best.
Don’t be like AJ, she didn’t push for answers and almost died 5 days before her 27th birthday.
Looking up at my children. The blue balloon is in honor of Lucia and the purple balloon is for Baby E. My babies they will always be
I am the mother of two babies. My babies do not walk this earth, instead they paint the colors of the sunrise. Lucia would be 7 years old and Baby E would have just turned one. I would have my hands full. My arms are not filled with children, instead they are filled with hope. When you are the mother of angles a part of your broken heart lies in heaven. It’s a hard job and it’s one you don’t get to choose, it chooses you instead.
I didn’t choose to have a pulmonary embolism or a stroke, it chose me and I’ve never looked back. 6 months after it chose me I found out I was pregnant. Like really pregnant, whoops “I was pregnant and I didn’t know it.” I lovingly called the baby little bear. It was a boy, a boy who died quietly in my womb. He was safe, he was loved, he will always be my first. Lucia, my baby you will always be.
After a baby dies you have this strong desire to get pregnant again. To rewrite history and prove to yourself that you can carry a baby to term. To prove that God found you worthy of motherhood. But what happens when you are told “it’s not wise for someone with your history to get pregnant……” You get angry, you cry, and then you slowly come to terms with it. You pray that science will catch up with you and that this cruel joke will be over and you will have your rainbow.
Five years after my stroke my rainbow came. Again doctors said “you will be high risk. We need to watch you closely, blah, blah, and blah.” We got excited, that excitement just like before dwindled when an empty sac appeared. Our baby, my rainbow was not meant to be mine. Baby E wasn’t meant to be ours. My rainbow slipped through my fingers and renewed my desire for motherhood. Baby E, my baby you will always be.
Babies are always at the back of my mind. I have names picked out and plans laid out. Jay and I tried for a year with no luck. Who knew a rainbow was so hard to catch. So I started down the path of fertility screening. I am now on a first name basis with the ultrasound wand, needles, and x-ray machine. I am fertile like myrtle who lives down the lane, yet my body can’t get intune. They say the nuvaring is most likely to blame, but we will never know for sure. In the past I was told “fertility meds are not for you.” Which makes sense since it’s recommended that I never use birthcontrol again. Hello blood clot creating hormones! Until now……….Science!
Science! Finally caught up with me. Medical research is a beautiful thing and now I can has a baby too! In October we tried a combo of Femera and Ovidrel with no luck. In February we are going to the next level, Femera and ovidrel with IUI. I can has an IUI too! Motherhood was a thing I could never touch, it eluded me and now I have her in my crosshairs. Because of medical research it’s within my reach.
My pregnancy (when it happens) will be different too. Back in the day doctors believed in large doses and starting lovenox early. Today we will still be starting as soon as I get a plus sign, but the dose will grow along with my pregnancy. We will start with a shit ton of monitoring and a small dose of lovenox until we build up to the higher dose when I am 7 months along (that’s if my body needs it). There is still a chance that our baby could be born lovenox dependent and that I could have a clot, but for me the risk is worth the reward.
Because of research and medical technology I will be able to have a healthy pregnancy too. Not all survivors get a chance at motherhood. In a lot of cases the risk is far greater than the reward. My heart breaks for them. I know the ache they feel and I know what it’s like to look up and wonder “why me?” All it takes is one look at a baby bump to make you feel less than. The baby isle and shower invites are a reminder of your inability to have children. They are a reminder of what was taken from you. We did not choose this road, the road chose us and we have to walk it until our time runs out.
I once belonged to that club, then I got lucky. Science and technology caught up with me. Because of research Femera was found to aide in ovulation by decreasing the estrogen levels without increasing progesterone. The Progesterone in the nuvaring is what caused my blood clot. The likelihood of a blood clot event on Femera is low and I don’t know about you but, I like low. I am a survivor, a survivor who is standing on the cusp of motherhood.
In my heart I know that this time I will bring a baby home. Heaven has two pieces of my heart and it’s time for a third to live on this earth. One thing I am certain about is that the doctors will learn from my fertility treatments and pregnancy and that information will help other women like me bring home a healthy baby. That right there makes all of this worth it.
I go Red for the survivors who will never get to be mothers.
When a woman has a misscarriage or a still birth people often say “oh you can try again. You will have another one, don’t worry.” They do not realize that those words or even the thought of trying again cuts through her soul. She wanted THAT baby. She did not plan for a future baby, she had planned on brining THAT baby home.
My journey to motherhood has had more potholes than smooth pavement. I watch friends fall pregnant on a whim. I for some reason do not have access to the baby water or whatever magical dust is flying around. Five years. Five years stood between Lucia and Baby E. Both my children were not planned, yet they were desperately wanted and now the desire to mother someone is strong.
Before Baby E I had made peace with the fact that I would never carry a child. Adoption, was going to be my best option. Doctors told me that my uterus was to broken to carry a child and mostly it was a risky endeavor. Girls with a history of blood clots and stroke, well it’s not recommended that you become pregnant. I felt cheated and robbed, one decision affected my whole fertile life. All my friends who went on the NuvaRing got babies, I got a blood clot. This was the hand I was delt and with time I learned to live with it.
That is until a blue plus sign showed up. I was scared, no not scared, I was fucking terrified. I had been pregnant before and it didn’t turn out so well. I went home with empty arms. I was cautiously getting attached to the group of cells I was carrying, the only thing that stood between me and my child was a viability scan. Every high risk pregnant woman dreads this scan. The scan is completed at 6/7weeks gestation, if there isn’t a heart beat, game over. Jay was excited for the ultrasound, as soon as an empty sac flashed on the screen, I knew in my heart it was over. God didn’t give me a second chance to be a mom. He brought me so close to motherhood, yet pushed me one step back. This rainbow was not meant to be ours. The chase was back on.
The world of baby making is not pretty. It’s pretty much a second job. There are charts to be charted, temps to be checked, sex dates on calendars, ovulation test to pee on and then there is the two week wait. The wait to see if all of your hard work (literally) and charting paid off. Month after month went by without a blue plus sign. Something in my gut said “lady you are a little off.”
A year went by with no luck. Down the fertility rabbit hole we went, I’ve had more blood test and scans (the ultrasound wand and I are on a first name basis) than I can count. My body and I are not on good terms right now. My egg reserve is good, yet something is a miss. Luteal phase failure, progesterone and I are not on speaking terms. She is suppose to be my girl and rise to the baby maintaining occasion. Bitch is sitting in her seat exchanging gossip and not paying attention to her job at hand. Getting her to step up is tricky, yet she is my only hope. I need her otherwise I’ll never catch our rainbow.
Talking about infertility makes me feel like I failed as a woman. I’ve got one job and that is to birth babies. I think in away women judge each other. Having fertility help is like the new c-section vs vaginal birth debate. Yes it’s true only a small percentage of the population needs fertility assistance, yet it doesn’t make me any different than fertile myrtle from down the lane. Maybe in away it makes me more of a woman because I have to endure a shit ton of testing and scans and needles to get my prize? Probably not, but I just want to throw that out there.
The getting pregnant process doesn’t scare me. The pregnant part is what scares me. Carrying a child scares me. Not knowing what the next scan will show is what scares me. My therapist assures me that my fears are healthy and normal. That as time goes on they will ease. But for now in this moment they are very real and it’s scary. I desperately want to be a mom, yet 9 months of pregnancy terrifies me. Jay does his best to ease my fears and calms me down. He knows what I’ve gone through, it’s a lot for one soul to carry. Jay tells me that I am strong and that I am capable of carrying our child, we just need to catch our damn rainbow and never let go, well when they are 18 will let go.
There is a five year gap between Lucia and Baby E. Which is not normal, it’s not normal to have a five year gap or to loose two babies in a row. Which the term loose is still strange to me, I know where they are and they are not lost. The fore mentioned is the ugly truth of fertility. Some ladies have what it takes and then there are those of us who desperately want to be fertile.
When someone asks me “do you have children?” I should be able to say “yes, but they died,” without fear of being judged or the awkward look of pity. Just like infertile women, women of dead babies get swept under the rug. It’s like we are societies dirty little secret, like we live in a fairytale land where every woman is fertile and every baby lives.
Truth: that land does not exist and life, it’s ugly and hard. I learned this the hard way. Yet I like many women still hold onto a glimmer of hope that my next pregnancy will be successful and that it will result in a live birth. While you are doing summer things, I will be getting poked, prodded and scanned to make sure my lady bits are in working order, because this, this is going to be the year we catch our rainbow!
There is no perfect survival story and there is no guidebook called “how to live your second chance.” Life is messy, it’s a beautiful disaster. Some survivors chose to curl up in a ball and wish the world away. Others are filled with anger and they become bitter with age. Some simply give up before they give them selves a chance to rise. Then there are the ones like me, a special breed who doesn’t deal with the mental/ emotional aspect of what happened, yet they want to change the world.
When you survive the doctors do a really good job at taking care of your body. Your mind and soul are left with you to repair, as they do not have time for that. They simply cannot mend what they cannot see.
Trauma leaves scars behind. Pulmonary Embolisims and Strokes take pieces of your soul and if you survive they leave you with survivors guilt. I’ve spent more days than I can count wondering why me and why not her? Why am I allowed to take a seat at the table while so many women are asked to leave? Fate she amazes me, maybe she saw something in me that I didn’t see in myself. Maybe she knew that I would grow in a moment of darkness.
I never looked at my PE and stroke as a tramatic event, for me it was a horrible event that I wanted to stuff in my pocket. I wanted to get back to normal as soon as possible, it never crossed my mind that I needed to deal with the mental and emotional side of survivorhood. In my eyes I was doing a really good job at running from my emotions and memories. My back pocket held my PE, the Stroke, Lucia, Divorce, and Charlie. As long as they stayed in my back pocket I was safe. I believed whole heartedly in the old adage “out of sight, out of mind.”
A soul can only carry so much disaster before its seems break. My seems burst long ago, I was living on patches, throwing myself into my work and crying my tears into the muppet like dogs fur. When I turned 32, I knew something had to give, I thought “therapy is only for the crazies and for those who can’t get their fucking little ducks in a row.” My ducks were lined up in size order, my exterior was iron clad, and crazy, ha I probably am but hey that’s ok who isn’t a little off these days.
Research, I checked the health partners sight to see what my plan covered,Watercourse is where I landed. Turns out they were right around the corner from my apartment, I had driven by their office for years. I slowly dialed there number, a nice lady answered, she asked if I had a couple minutes, I said yes. I unfolded the items hidden in my back pocket, she repeatedly said “you poor thing,” and promised to match me with a therapist. I was sceptical and hesitant, a few days later they called, her name was Emily. My first appointment was scheduled. I was ashamed to tell my friends “hey I’m gonna go see a therapist so I can learn how to deal with my shit.”
Walking into Watercourse I was in denial and skeptical about therapy. Mostly I was afraid she would tell me “you are insane, here is the name of a psychiatrist.” No one wants to be told they are crazy. Emily didn’t tell me I was crazy, instead she asked me question after question and with each answer the items in my back pocket unfolded into the room. She started to build a picture of my past and my survival mechanism “put it in a box and deal with it another day.”
Bottling up emotions is not the answer. Eventually the top is going to fly off and you will end up in a puddle of tears on your appartment floor. Trust me I know about this kind of thing. Emily understood the road I was walking on and through guided conversation we traced each step. We discussed how I don’t always have to be perfect, she told me “it’s ok for you to have bad days too.” Emily was the first person in 6 years to tell me that it is ok to have bad days or off days or any kind of day I want. Everyone else acted like I shouldn’t complain or have a bad day, instead I should be grateful that I am alive.
I am grateful to be alive, I know that a few minutes could have given me a different ending. I am a stubborn survivor, help is something I rarely ask for. In my mind asking for help is a weakness and shows your flaws. Emily made me realize that we all need a little help and that people want to be needed. I am so used to being the helper that I put my own needs aside. I do everything on my own, including driving myself to the ER, because I don’t want to inconvenience anyone or ruin their day. Which I wouldn’t recommend you do, ask for help, don’t be like me. Then again I have turned a new leaf and have learned its ok to ask for help. Jay can attest to this as he has taken me to the ER about 3 times now and carries heavy things for me. I am still not great at it, but I am learning that it’s ok to not always be the helper.
I’ve been seeing Emily for over a year now and she has helped me immensely. Not only have we delt with survivorhood but we delt with Lucia too. Everyone says “oh you will have more children,” without knowing those words cut through me like a knife. A grieving mother doesn’t want those words, she wants her children. When a plus sign showed up in May I was terrified and did not want to get to attached to the contents of my uterus. She let me know that these feelings were perfectly ok and that with time they will fade. That I didn’t have to be afraid of an ultrasound machine and that I have a right to demand that we handle this pregnancy my way.
That + sign slowly turned into an empty sac, I was crushed. I felt defeated that my rainbow eluded me. Emily helped me deal with my emotions and fears when it was determined that a D&C was the best course of action. Without her help I probably would never have gone through with it. We talked about the procedure and that it was ok for me to speak up if I didn’t like something or if something felt off, after all it is my uterus. I did my research and found a doctor who understood what I had gone through and he promised he would take every precaution he could to protect my uterus. He did just that and he said “I have no doubt that you will carry a baby.” Those are the only words I needed to hear, that I can have babies too.
A perfect storm, the past 6 almost 7 years has been waves of disaster. Between each wave I found calm and enjoyed the beauty in the silence before the next one came crashing down on me. I was sailing in a beautiful disaster. My boat on the outside her haul was perfect, but on the inside my engine was slowing burning out. Therapy helped me really examin each wave, to realize that there was nothing I could have done to avoid them and we cannot simply see in to the future. If I did manage to avoid each wave my life would be drastically different and I wouldn’t be me.
The biggest lesson I learned is this: it’s ok to seek out a therapist. Sometimes one goes through so much that she needs another soul to help her deal with it. I had no idea where this therapy journey would take me, I just went in with a semi closed mind and came out stronger than ever. The doctors they fixed my heart and lungs, but Emily she mended the one thing they couldn’t fix, she mended my soul.
We are all in this together.
Mental health is often overlooked when it comes to heart and stroke patients. So many doctors only concentrate on the physical and leave their patients to struggle through the why mes, the what ifs, and other questions that plague survivorhood. The thing is we do not have to go it alone talk to your doctor, let then know about your struggles. Because one’s mental health plays a huge part in their recovery. If your mind is not in the game, then your heart surely won’t follow.
We should be counting down the days, the days until you arrive. I should be injecting myself for the last time and giving myself a pep talk for the impending c-section. We should be excitedly expecting a CoraLeigh or Olivier. Jay and I should be double checking the woodland themed nursery, the car seat, hospital bags, making sure we have enough dinosaurs and welcoming family as they excitedly arrive. “Do we have enough diapers and wipes and blankets and clothes? Did we baby proof the house enough? Oh God! Did we prepare the cats and muppet like dog for the arrival of their human sibling?” Those are the things we should be asking.
Those things are not being asked and checked. Our dream lost its steam on July 7, 2015, Baby E was never meant to be ours. Only a sac developed, it stood empty on the screen, no fetal pole or yolk took up residence, it was the little sac that couldn’t. But our sac held answers, the Doctor says that two sperm fertilized one egg, and that a human only needs 46 chromosomes, not 69. Our baby was a perfect genetic accident, it was just never meant to be ours.
If you know me well, then you know I have a mad love for dinosaurs. This was to be Baby E’s going home outfit with a cardigan and pants of course.
Baby E was an easier pill to swallow, because I had a why behind the “I’m sorry.” With Lucia there was no why or how, he was just gone. His little light went out before it even got a chance to pierce the darkness, Baby E’s light never got a chance to start. My love for them pierces the heavenly skies and paints the colors of the sunrise. My babies they will always be.
I like to believe that Baby E found Lucia in heaven. That my babies are together, playing and waiting for their parents to arrive. That God has a soft spot for babies with to many chromosomes and that Lucia is breaking in his big brother shoes and watching over Baby E. Those two, thou small made a huge impact on this world. They are loved and cherished beyond measure. Lucia is my parent’s first grand child and Baby E is the forth. My parents are looking forward to a fifth, for they are eagerly waiting for us to catch a rainbow.
Baby E is Jay’s first, I have to believe that my third time and Jay’s second time will be the charm. That Jay and I will catch our rainbow and bring a baby home. I’ve picked up a few baby items here and there, I want to make it known to the universe that we would like a baby to put into the clothes and swaddle in the blankets. The stork can drop one off on our doorstep any day now, we are not picky, well even take a freckle face ginger child.
We have hope that one day we will have a viable pregnancy. Jay and I have picked out names for our future child. Our girl name is CoraLeigh Rae and our boy name Olivier James. I know what you are thinking ” knowing AJ, there has to be a story behind these names!?” There is and there are stories.
Ms. Cora M. Linderman 1897 – 1994
One day if God grants us the chance to have a daughter CoraLeigh Rae will be named after three people she will never meet. Cora is in honor of the oldest woman I ever knew. She died at 97, 3 years short of her goal to live to 100. Frankly Cora was the best friend a litter girl could ever ask for. Ms. Cora Linderman was a Swedish immigrant, she was the first telephone operator to give instructions for CPR over the phone, she taught me how to play dominos and spent hours entertaining me with her stories, she was mine and I was simply hers. Leigh, is in honor of my Dad’s sister Cherrie Leigh, a woman with a large heart who died to young. An finally her middle name Rae comes from a wild attorney named Charlie Rae, a man whose dream ended far to soon. I want my future daughter to be named after strong individuals because her name will carry their legacy.
I’ve carried a boy and his name is Alucious Gregory, we simply call him Lucia. That name is unique and it is perfectly his. This time I went with an older name, one with strength and meaning. My family started in France, voyagers who crossed the sea, so Olivier was the perfect fit and spelling. Yes I went with the French spelling of the name Oliver. Plus ya know I have a deep dark secret desire of yelling “Olly Olly Oxen Free” at my future son. We’ll call him Olly for short. James comes from my father it is his middle name. It made sense because Lucia’s middle name is my dad’s first name, so if it isn’t broke just continue the tradition on.
My three children togther. The Blue star is for Lucia and the Purple is for Baby E
Jay and I make a point to talk about “when we have a baby,” it helps ease the pain and gives us something to look forward to. I have to believe that God isn’t cruel and that he would not deny me motherhood. I have faith that our rainbow is just on the horizon. One day I will have a due date. One day nine months of blood thinner injection, scans, and constant doctor visits will be worth it. One day I will have a c-section and we will cross the finish line with a baby in our arms as Lucia and Baby E watch over us from heaven.
One email told me that my settlement check had been cut and mailed out. I knew that the post office closed at 5PM, so today wasn’t going to be my ending. I got home at 5:10, breezed past my Birchbox and opened the mail box to find the all important “we missed you card.” The back of the card said the post office was open til 5:30 PM, it was 5:10, I knew I could make it and I did with 8 minutes to spare. Damn it door is locked, I show the man looking out the window my card. He opens it a crack to tell me they are closed, I explained “sir the back of the card says 5:30.” He points to the hours on the door, the door says Close 5:00 PM and 3:30 PM on Saturdays, again I pointed to what the card said. He explained he was the supervisor and they were closed. I had come so close, yet so far from being done.
I could feel the tears fighting through, I looked at the man and said “Sir, I have been waiting six years for this letter, I know waiting one more day won’t hurt, but you see Sir that letter is my closure, its a settlement check, a check I’ve been waiting six years to see. He started to notice the tear rolling down my cheek, he said “here let me look at that, I don’t normally make exceptions, just wait here ok. He closed the door and disappeared inside, he emerged a few minutes later and told me to come in. In his hand was the letter with a logo I have seen dozens of times, but today it meant it was all over, I just needed to sign and closure would finally be mine. I tearfully thanked him for making the exception, explaining he has no idea what his kindness meant to me.
The tears began to fall, I sat in the drivers seat holding the envelope in my hands, quickly realizing that my tears were staining the envelope, I figured I should probably open it. I did, never in a million years did I think I would see this day. Never in a million years did I think I would see a check. It was just this distant far away untouchable thing, that was never meant to be mine. Yet, there it was in my hands, my name was spelled correctly, its mine and mine alone. I was never in this for the money, I am humbled by what I received. The check doesn’t take away what happened or undo the past six years or bring back my son, but in some way it validates that what happened to me was wrong. Merck never had to admit wrong doing, they will not be held accountable for the deaths or thousands of injuries that the Nuva Ring caused, they simply just had to payout and walk away to operate another day.
I never signed up to get rich, I wanted to stand up for myself and to prevent this from happening to anyone else. Having your life change in seconds scars you, it changes you in ways words cannot begin to describe. If I would have known that this little plastic ring would bring me to the brink of death, I would have left it on the prescription pad and asked my doctor for something else. We as humans cannot see into the future nor can we relive the past, we are in this haze called the here and now, it holds us and comforts us, in away it protects us from the journey ahead. Because if we knew our road was going to be lined with pot holes, tears, and fear, we would stop traveling and stay just as we are. October 22, 2009 taught me more lessons than I could ever begin to explain, it taught me to fight for myself and to always listen to my body, because she will never steer me wrong. It taught me to love my friends like sisters, to cherish my family, to dance on the good days and to fight on the bad. Faith is something I always have, as long as she is at my back, I will face the wind and sail the angry seas.
Survival is a funny thing, you go through phases and it is an ever changing sea, no wave nor current is the same. There are moments where I feel guilty because I lived and someone else’s daughter died. One out of five people will survive a pulmonary embolism with infarction, one out of five is a shitty equation if you ask me. I feel guilty that I have no long term physical or cognitive side affects from my Stroke. I see other stroke survivors struggling and my heart breaks, I know why my out come was different than there’s and it kills me inside to know that if they had received TPA there outcome most likely would have been like mine. I am forever in debt to my Woodwinds care team, One question saved me, if the doctor never paused to ask “are you on a birth control,” my mom would have picked out my urn instead of my 27th Halloween themed birthday cake. Woodwinds will always have a place in my heart, because its where my second story began.
Looking back my second story has been a beautiful disaster. A disaster that is mine and mine alone, I would not trade this journey for anything in the world. On October 22, 2009 I had no idea that one moment would lead me to give a speech on the capital steps in front of members of congress. I had no idea that I would be come a You’re the Cure Advocate and lobby in Washington D.C., I had no idea that I would be a voice that would help get the MN Stroke System of Care passed and funded. I had no Idea that I would be a Go Red Spokeswoman who shined on billboards and a public service announcement. Money doesn’t matter, using your story to make a difference is how you fight back, fighting back is what matters. Merck may never have to admit their wrong doing, but I can tell the world what happened to me, through my story I can save another woman’s life. I can get her to think about her heart health, her risks, and get her to ask her doctor questions, questions that will lead to answers that will improve her quality of care and ultimately her quality of life.
I am who I am because of Merck and the Nuva Ring, they will always be apart of me. In one moment of disaster I found my purpose and I am never leaving my soap box. But the thing is behind every thriving survivor is an amazing village of supporters. I am so grateful to have the worlds greatest best friends, Sherri, Jilliann, Lisa, and Tara never left my side, on the bad days they picked me up and pushed me to go a little bit further. My parents, they are the rock in which I build my house upon, they gave me strength when I had none. My Mama always looked over my INR numbers and medication lists to make sure the doctors were treating me correctly. My Dad and I are like two little old men sitting on a porch discussing chest pain and the days gone by where we could run and fight to live another day. Now we just sit in our rockers and watch the world go by, running is for the young folks and well neither of us would win a fight. My dad has rescued me from more tight spots than I can count, he’s never seen the ocean, he made damn sure that I traveled the globe not once but twice, so I am paying it forward, I am taking my Dad to the seashore, I want him to feel the mist and to stand on the edge of the world.
I got a chance to be the Auntie that I was always meant to be. Sophia and Jack could be learning about me from old photos and their mama’s memories. Because of early intervention and research their Auntie was saved, they get to hold her hand. The day I became an Auntie is the day my heart healed, Sophia and I have been bonded since day one, little Jack is learning all about super Auntie. Those two have my heart and there will always be a surprise for them in my purse. Sophia and Jack are why, there tomorrows are what I am fighting for. Both of them deserve to grow up in a world free of heart disease and stroke.
Second Chances are far from perfect. Lucia was to be the sun after my storm. Instead God had other plans and just as before the winds of change blew through and I had to sail the waves of grief. Losing Lucia allowed me to put myself first, I called it quits and walked out of my loveless marriage. Divorce was not an end, it was merely a beginning. I traded the ex-husband in for a little muppet like dog, which is one of the best decisions I’ve ever made. You can never go wrong with a dog. On a hot August day a small white dog with a big gray nose rescued a human and he never looked back. Cullen became the glue that kept me together, as long as I had him at my side, I was never alone. Together we took on uptown, strolled through the parks and picked up glass on the beach. Cullen has provided me with endless laughter, he makes the bad days brighter and life is more fun with a muppet like dog at my side. Cullen was the love that my heart needed.
Love found its way in, Charlie will always be apart of me, I think that in away Charlie knew that he was not my forever, only a mere moment. He allowed me to be, to heal, and to find myself. Charlie allowed me to believe in love again and when he died, my heart broke. Yet I knew Charlie wanted me to carry on with living and not be stuck in the land of what if. I had to break before I could shine. Jay fell into my in box at the perfect time, my heart it was ready to love again. Jay’s love was the glue that my heart needed. With each date I began to fall for him. In Jay I found home, he has my heart and I have his. Jay joined me on the tail end of the Nuva Ring law suit journey, I am glad that he is at the end, because together we can turn the page and walk away to start a new chapter. Because this is only the beginning the best is yet to come.
There were moments where I wanted to throw in the towel and give up this fight. But then I looked in the mirror, I faced a woman who lived through the worst day possible. She never thought the birth control she took would almost take her life. She was weary and weathered, yet she still faced the sun. Her womb carried children she never met, yet she still has faith that one day she will hold a baby in her arms. Her heart was broken and jaded, yet she still manages to love. Little did she know, she just had to break before I could shine. I am living on borrowed time, my life it is a beautiful disaster and each day I am standing above ground means that the best is yet to come.
Merck you may have won this battle, but the war, it rages on. I will not give up until there are none, because no woman deserves to fight alone.
“For as long as I am breathing, my babies you will always be”
In story books, everything is perfect. Girl meets her prince, her prince knocks her up, and nine months later the family of two becomes three. The writers make pregnancy out to be magical and easy. On the pages, every woman gets pregnant, every marriage is a happy one, and every child gets a happy ever after.
I am jealous. Jealous of fertile Myrtle who lives down the lane. For she gets pregnant with ease and carries her babies to term without worry. Blood clots, stroke, and irregular heart beats never cross Myrtle’s mind. She does not have to wonder “should I take my shot at 2pm or wait until I get home?” Myrtle never has to look up at a screen and hear the words “I am so sorry” as they squeeze her shoulder. Myrtle doesn’t know the heart ache of seeing a lifeless baby on the screen. She does not know what it’s like to have a doctor say “maybe it’s to early, maybe next week we will see a big healthy yolk and a fetal pole!” Myrtle does not have to drive home fighting back tears as she looks in the rear view mirror wondering “why me, why my baby.”
I desperately want to be Myrtle. I want to be able to not just carry, but to hold my own flesh and blood. To look my living child in the eyes and to watch them grow. After Lucia I had lost all hope, countless times I was told “no more babies.” That pregnancy wasn’t safe for me and that my uterus was to beaten to function. I made peace with my fate, that my only child is in heaven. Lucia will always be my first and I will love him until my last day on earth. My baby he will always be.
Maybe I just needed time to heal and recover……… On Mother’s Day I looked down at a bright blue plus sign. The impossible, happened. I was terrified and thrilled that my rainbow was on board. I did my best not to get attached. Jay was over the moon and he wanted to be apart of every appointment. We started picking names, planning the nursery, and talking about our future. The excitement was short lived, this rainbow was not meant to be ours.
This baby wasn’t meant for us. At our first ultrasound an empty sac is all they saw. It measured correctly 6weeks 6 days, but no sign of life was inside. The sac it grew bigger, yet nothing took up residence. No yolk, no fetal pole. I looked up at the sky and I knew that this wasn’t meant to be. Jay said “babes it’s just wasn’t CoraLeigh.” He secretly wanted a girl and fell in love with the name CoraLeigh.
My body is a dick and it didn’t want to let go of the pregnancy. I didn’t want a D&C, I held out until it was evident that I wouldn’t misscarry on my own. A plan was made, ultrasound and antibiotics were on deck and on July 7, I went under. Surgery went well, the hysteroscope showed that my uterus was healthy and not bruised. The doctor said “she can and will be able to carry babies.” I can have babies too. Those are the only words I needed to hear.
Baby E, was more than an empty sac. The pathology exam found that it was a partial molar pregnancy, meaning two sperm fertilized one egg and abnormal cells took over. Jay and I didn’t fail, our little baby just had to many chromosomes, it was a genetic accident, this little one wasn’t meant to be.
I am 2 and 0. God holds my babies. I have my days where I wonder what Lucia would be like today. He would be 5 and in kindergarten. I wonder if he would have my curly hair, or his dad’s eyes, and if his smile could light up a room. If he would be a wall flower or daring like his mom. Lucia was here for a brief moment yet he left foot prints on my heart. My baby he will always be.
If Baby E had the correct number of chromosomes I would be 6 months pregnant today. We would know if we were expecting CoraLeigh or Oliver. We secretly wanted a girl, but we’ll take anything we can get. Jay and I would be putting the finishing touches on the nursery and picking out the perfect car seat. I would be knee deep in appointments, ultrasounds, and Lovenox injections. I want those things, I desperately want those things.
Losing a child, makes you want children even more. I want to prove to the world that I am capable of carrying a baby to term and that I am worthy of being a mom. Jay and I have so much love to give, we are patient and kind, good parents we will surely be. I have faith that my third time and Jay’s second time will be the charm.
One out of four women will experience pregnancy loss. I never thought I would be the one twice. Never did I think I would be 2 and 0. Babies seem to elude me, yet I have faith that my turn is right around the corner.
Have Bear Will Travel 