My ear has been throbbing away since the biopsy. After all these days of worry, good news prevailed! The lab report was normal! Whew! The polyps in February and this cyst on my Breast Cancer Survivor Anniversary all points to time to take better care of yourself. Next time may not be a warning shot! Tomorrow is the Friday before Memorial Day, my anniversary of breast cancer. It’s raining here, but sunscreen will be top priority this summer! Time to celebrate with walkless events with the family!
Mother’s Day is tough. Many have lost children. Some face infertility. Others have lost their mothers. I am very lucky to have my children. I have been pregnant seven times in my life. I have two living girls. In my twenties, I studied hard and worked hard to get a career. Nothing in life prepare me for what was ahead.
In 2010, we learned we were the first documented case in the world for carrying a rare disease. Nothing in the universe prepared me to hold my first born child, then end life support the next day. I had never watched a human die before. Months afterwards, I remembered over and over. I became obsessed with is there an afterlife or God. I tried to reach out to others. My soul begged, please just hug me and love me. People misjudged this. I was told to get over it… I planned my entire pregnancy. I brought things. I took my folic acid three months before hand. I went to the doctors. I toured churches looking for that perfect family church. I went to the OB GYN. I made sure all dental work was complete. When we learned our baby had multiple birth defects, it tore me apart. Although not every pregnancy had a happy ending with us bringing home a baby, I appreciate and give thanks for each one. I am forever their mom.
My first born Avery died a day after birth in our arms. I wanted to take her place so bad. Avery barely opened her eyes. When we spoke to her, her head would turn and she would look for us. I nicked named her Avery Bravery. In my darkest moments in life, when I need to be brave, I whisper, “Avery Bravery.”
My first rainbow is 11 years old. She gets so excited and happy. She still happy dances. I have so many wonderful memories. I am filled with her love and wisdom. At times, she says things with such great wisdom as if she is 11 going on 80. Her name is Hope. I love to see her dance with such gratitude and grace. Hope fills me with Hope. Every day, I see a young lady growing up fast. I am honored that her care as been entrusted to me. I am proud of her.
I wish a rainbow meant it would never happen again. Sadly, we lost a pregnancy at 6 weeks and 13 weeks. I love them from the moment, I tried for them. My heart was empty. They were mine for the time they were here. I desperately tried and lost them. They are apart of my being.
At 18 weeks, we lost our son Haven. For weeks, we did not know if we lost a boy or a girl. We had to name him something either a boy or girl could use. Years later, unknown to me, I was gathering medical reports. In the pathology report, it questioned if Haven had been a twin. I found myself grieving two babies. I could not hold him because he had been dead over a week. We buried a baby without knowing if it was a boy or girl.
My miscarriage at 13 weeks as previous mentioned in the blog was at Christmas time. Shortly after Christmas, I was outside crying and shoveling snow. I heard an animal crying horribly. Under my neighbor’s porch was a all black kitten with a small patch in the shape of a heart on his chest. He had an abscess on his neck. We took this kitten in with the intention of finding a new family. The kitten was estimated with the actual birthday of Haven’s original due date in September. We named the cat Raven. When I tried to give this cat away, Hope said, “my cat.” She was 2 years old at the time. Raven is like Tigger from Winnie the Pooh. He gets so excited that he pounces on you. As small as he is, he can almost knock the wind out of you. It broke my heart, when I had breast cancer, because literally I need to put Raven in a room because he would pounce on my chest or treatment area so hard.
This leads me to my daughter Addison. She was born still with the same rare disease that the doctor’s said it would most likely never happen again a week before Thanksgiving in 2009. My heart broke as I watched Hope, who was 4 year old cry. For many years afterwards, Hope took it hard when she learned someone at school became a big sister. She asked when it was going to be our turn.
Eight years of infertility and pregnancy losses, I am happy to say it was with Joy that Joy was born. At 20 months, she has taught me a lot. She is not sitting in her highchair what so ever until she gives Buddy, our dog, a treat. She is going to strap herself in. Joy is still trying to change her own diaper. She is independent and going to be an outstanding CEO someday as soon as we survive toddlerhood. She is your classic toddler with a heart of gold. Over half of my steps on my pedometer are from chasing her. Keep reaching for that cell phone or keys, because sooner or later when no one is looking she gets them. Set goals and reach them. Life is adventure.
I have said this before. Without seeing all my babies, it’s like I am a painting at a museum half covered. If you look at my professional accomplishments only, you miss the picture. If you see me as a breast cancer survivor only, you miss the picture. If you only see me as the mother to my two Earth girls, you miss the picture. You see the whole me, when you can acknowledge everything. Without one piece, you miss the picture. I carry my love always. My gratitude is to be alive to see another Mother’s Day and to all my babies, who chose me to be their mom.
Last night, my heart was cut into a million pieces. I have come from a tough background. Last night threw me over the edge. My birth/marriage family has basically been emotional cold. Since Joy’s birth, I have been trying to get to a state of acceptance, move on and rebuild.
The surgery went okay on Friday. I don’t have too much information because the doctor came and I was out. My husband was called so all I know is Polyps were found and removed. I don’t know how many etc.. We had to leave at 5AM. The girls fell asleep. I woke up with a head cold. So, I just went anyways. I asked him to stay with me in case the hospital decided not to do the surgery. I got a bunch of snappy answers. My head clicked and I said forget this now. Our former marriage therapist told me he may be some underlining issues that I need to understand. I have not shared that back. I am trying to accept and adjust. He apologized and all. I just brushed off. Let the show go on, I will take care of myself!
I get to the waiting room. It’s packed with people and their family. I tried to bottle up my feelings of sadness. When I had breast cancer, those feelings of isolation resurface. My in-laws have my name, email address and number. My well wishes went to his cell phone not mine this time. Which brings me back to another matter. I find in this electronic age, my own sister will dictate messages through my aunt. I address this again. Auntie, the woman is almost 50 years old, let her call me directly. A few weeks ago, I called her directly because they was a shooting at a popular teen spot. In the middle of the frenzy, we didn’t know if anyone was shot or killed. I called to check on my nieces and nephew. No one was killed thankfully during the incident just shots.
Maybe it was the combination of my first daughter’s birthday/death anniversary, the fact it was called a “D&C” and the fight I had, I cried hard in the waiting room. I resented the procedure being called a D&C. I had been through a combination of 3 D&E/D&C. Emotions were raw. I was in and out to the bathroom trying so hard to bottle it up. It didn’t happen. I squeezed out one last call to my daughter’s cell phone. I learned the girls went home and fell asleep. They pregnancy tested me. I felt myself even through we are officially done daydreaming about conception. Oh well, it didn’t happen.
Friday, no pain. A string of messages perked me up. It was odd to be home and child free. Even the cold behaved, maybe I wasn’t really sick. Saturday, the day was a mess. My husband needs to manage Joy, our toddler. I can’t pick her up right now. Joy extends her arms. I don’t know how much she does understand. So, I tried to explain. I sit down. Joy go get a book. I will snuggle you and love you that way. Joy is a persistent little person. No, I want my mommy.
Saturday, raw anger was boiling. I wanted to finish that movie about the angels of our rare disease for Rare Disease Day. Hope practiced Twinkle Twinkle Little Star for weeks on her flute. Her bedroom is a mess, because we are trying to paint it. He is sick. I am sick. Hope is not feeling well. We went back and fourth trying to finish this movie. I posted a rough draft up. I was thanked by the one mother who submitted anything. Hope made slime and covered the kitchen. The cramps came and I found myself in a squat position with preteen upset with her failed slime project. Thankfully, my purse is well stock. I went to the basement room because I was ready to tear her apart.
Then, came this critique about the movie from a friend about the music and text. I was having serious cramps and my nose is burning. So, I practice a type of coping skill, which is like putting the ball back in her court politely. Okay, you have these ideas, so help me fix it. I watched the wording. Of course the answer was “I can’t do these things.” She texted me with an apology. For a month now, I have been trying to pull this off with little invested interest from the group. Again, I watched how I said this, but this one hurt. I have been there for years. I sent her messages when she was pregnant with her baby who didn’t make it and during her subsequent pregnancy, which was a healthy girl. I was heated. I sent a message explaining these things. I accepted her apology. You know she was one of those messages after the surgery. So, we are good today. She is still my friend. All fixed. It was a very thin line because I wanted to loose my cool. The answer is we are all living beings. To use old 12 step wisdom, I was a proud member of Ala-Anon for many years. I am grew up into a substance abuse counselor. “It’s about progress, not perfection.” The more I live. The more I understand, you need to be flexible in life. Perfection is something for TV show. In the real world those perfect plans are not always realistic.
Next year, just one movie for Avery and Addison. (Period the end.) I am done with my co-dependent slip. I am feeling better today. I hope we finish painting Hope’s room. Funny enough, she wanted this different color. I braced for it, because the room was originally painted for Avery’s nursery. It ended up, it’s the same color. It was a string of communication errors. One could say it was like the angel Avery just said no to Hope’s color choice. My husband has hearing loss. I am still trying to adjust. He swears I told him to buy the paint last week. What I really said was for Hope to think about it. He just saw something circle and brought it. Hope is saying it’s okay. It may be a few years before the house is sold. Let’s end it with, it’s about progress not perfection!
The holidays were crazy days. My agenda was so full. I am still doing stuff I said I would do over vacation. My mammogram was normal. (Thank God!) It was a crazy day. I went from the craziness of the holidays to working the night before my mammogram. I woke to a bad morning. I love my glasses, but the frame is so light colored. I can’t seem to find them a lot or I drop them. I get out of the shower to discover my glasses missing. I half stepped on them, which bent the frame. Oh wonderful from holidays to back to work to mammogram morning.
The day couldn’t get much worst, when at the hospital, I discovered my wallet missing. I was I.D.less. Panic stricken, I kept going to every parking garage except the one, my husband parked at. I learned I had an appointment at 10AM for the breast surgeon. I am 150% anxiety now. What else could go wrong? Two people joking with a Firefighter that a drill was planned for today. Not before my mammogram.
(Oddly enough, when I was having radiation treatment at a different hospital about 7 years. During one treatment, the fire alarm for the hospital sounded. I was told to hold still because it wasn’t our area that needed to be evacuated. Someone made the joke that someone had brunt toast on the maternity ward. I held myself together. I went out to the car and I sobbed horribly. I should be the one burning the toast in the maternity ward. My baby Addison had just born still about a year before. Here I was fighting breast cancer instead. When Joy, my daughter was born 4 years later. I kept refusing to let any member of my family use the toaster on the maternity ward. )
I have the hardest time with mammogram day. Somehow, my anxiety is always out of control. The hospital worked with me. I had to call the school and tell them I was late. My oldest was sent to aftercare. My anxiety was Hope remembers when mom had breast cancer. Her ABC’s in kindergarten was different from other kids. A is for my Angel baby sister Addison and my Angel Nana. Both had just died. B was for Breast Cancer, my mom is fighting. C is for Chemo, my mother has no hair. Hope knew it was mammogram day. I was scared that she would get frightened about a bad test result. Here I am anxiety high plus trying to explain this to the school. This made my anxiety higher. The delays were caused by me. Everything worked out in the end. I finally found the right garage and my wallet was on the floor of the car.
The relator got the stomach bug and canceled during vacation. So we rescheduled for mammogram day. I worked the night before the mammogram and I thought I would have time to clean it up quick before she came. My husband dropped me off at the house. I quickly walked to dog and I cleaned the stove. I decided not to cancel. The entire month either she canceled or we did. It is what it is! So, the quote was lower than expected. After all the cleaning and reorganizing last year, I heard reorganize and repaint all the rooms. We are waiting for our taxes to see how we are going to proceed. The chimney needs repair. Bricks are close to coming out. We need a new cellar door. The kitchen needs new counter tops and the bathroom needs a new tub enclosure. I was schedule to work that night. Just last year, I stayed up all night to clean up the mold. I would sleep for a few hours, then Hope needed to go to school. I would stay up all day and care for Joy. Those were my three days a week off. There was no complaining or back up. That was my life from April to June. We had a serious health issue brewing in the house. I did it for my kids and pets. I have kept my promise to myself. NEVER AGAIN! I still can’t seem to sleep all night.
I kept my promise to myself to not let myself be worn out. I cut down my hours at part time job number 2. I rescheduled myself from one weekend day to Mondays and Tuesdays evenings. If I am going to be working so is everyone else! So, last weekend in the middle of a major snow storm, we started phase 3 of remodeling the house. It’s not clear if it will sell or not. We are not sure if we can afford the mortgage in the town next door. There is a huge price gap between our crime ridden city, which is on the top 100 violent cities in America and that town next door, which is 3rd in the state for one the best towns to live in. Honestly, I don’t know if I belong there. I can’t seem to connect to others. Hope says people ignore her at the school. I am not sure if we will end up there. Hope wants to graduate there. She can live anywhere in the state and continue to attend the school through the program of School Choice. The only agreement is we need to be willing to drive her.
I have also been on other social media accounts exploring other parts of my life. Sometimes spending too much time on it. I don’t want to discuss it. My decision has been made. Life is not “perfect.” I don’t live in daily active cancer treatment. No one died in this family from a rare disease today. This is about still picking up the pieces and determining what is best for the family. The house is way better than the day Joy came home from the hospital. I am hoping for us to move this year. Hopefully to a new joyful place for our family to live.
I look at this picture of Addison and my heart is filled with love. Today is the 7th anniversary of Addison becoming an angel. She was born quietly into the world. I started this post and I must have lost everything written before. There were many losses in my life from 2009 to 2010. A piece of my heart stands still on her lost. It holds her in quiet vigil. Who would she be today? My mind wanders. Our family’s hearts broke. Sadly, we did not know we were carriers of this rare disease called Campomelic Dysplasia. We went to all the doctor appointments and prayed. What do you say to the first family? No one knew or predicted this. Sweet Addison….. We love you…
Please join me in a prayer for her. Please let them find more answers for all the rare diseases. Please let awareness spread on how sad infertility and recurrent pregnancy loss is. Please allow families to grieve as they need. I hope families with children with rare disease as shown love and compassion. Please let us find an answer to cancer. May Addison’s parents (My husband and I) continue to grow. May we find peace with our extended families. May her sisters on Earth become who they are intended to b. May they dreams come true. May Addison hears us utter her name today and may she know that she is loved. May the babies I could not bring home know all them are loved forever. Amen!
PS- I had to work today. We will be going out as a family to celebrate her life after work.
This weekend has been a bit of a emotional roller coaster. There is going to be a management turn over on my weekend job. I think it’s for the best. So, I texted the 2 women who work with me and supported me the most. Everyone got a personal call, but me. My friend also confirmed she is in the process of a divorce. I was talking to her and all of sudden she just hang up, because her boyfriend called. The good news is I have been asked to work a few programs over there. Until the dust clears, I am able to work the other places.
Joy is getting very big. I had a lot of cancer treatment due to the breast cancer due to the left arm. I know from tests after treatment there is scar tissue. I struggle a lot to hold Joy. I made it work for so long with the infant carrier. Friday night, I attempted to put the new car seat in. My husband and I struggled for a few hours in the driveway. Finally, it was so late, I gave up. That is the reason, I started with one car in case there was a problem. The next day, I had to leave work early for someone to fix it. Finally, someone explained this to us. The hospital where Joy was born fixed it. It ends up I got the best model. Unfortunately, I drive a small car. It was the reason we struggled so bad the night before. The man spent 10 minutes putting in the car seats. He says to me, “we do this daily.”
Since we had to drive an hour to have the car seat fixed. We went to that restaurant we missed on Joy’s birthday and we went to the drive through for the movies. Joy is a toddler now. Sitting still is not her idea of fun. We had to walk her around the car constantly, until we made it through one movie and decided during movie two that we were too tired. It was 1 something AM by time I went to bed. Joy was up 7AM. I don’t know how this all started. Maybe it was two people over tired. He brought up house work and I brought up the new house. The original intention of us buying the house was to move out, when we saved enough money. We could only afford a starter house in a violence ridden city. The infertility came and the breast cancer came and tons of bills. He says something, I give my heart to clean up this place. He ups and changes his mind all the time. My argument is there is no after school at the middle school in the town our daughter goes to school in. I will not have her take the bus home in a city on the 100 most violent cities in America list. I understand due to terrorism no place is safe anymore. I have been working my heart out not sleeping to work on this house to get ready to sell. We ended up arguing all day over money and goals. I kept saying how about I just work the entire weekend now for now on.
Finally, after asking him to make the call for marriage therapy for years, I made it myself. The baby’s daycare handed us a fund raiser packet on Friday. We talk about this a center is so much more money than the home day care. The home daycares wouldn’t take Joy as an infant, because I think a baby is more work. I started looking into home daycares again for Joy. I am not trying to end my marriage here. I think our girls deserve a better life. I canceled plans with my aunt yesterday, because I didn’t want to cause any more bills. We did get to go an island locally. The tension is so high right now, we had a fight because the oldest asked for ice cream. He brought her ice cream. I refused it after that conversation and I had a nap. I have had insomnia all summer. I am cutting down the caffeine. Due to his medical condition, we don’t sleep in the same room. Gee, due you think needing to sleep in one position near an AC so I don’t kick out the hose may have something to do with my insomnia? So I told him, I want my own room with a bed (PERIOD THE END.) I am going to stop using the nicotine gum. Somewhere all this infertility, genetic testing, breast cancer and hearing loss has caused a rip. We are trying to repair it. It’s so slow. Bills are high because in the summer our oldest needs all day child care. August was their birthdays. This morning, I told him fine we will just get a condo. I will get rid of the swing sets. I feel like he is pushing me to give up on selling the house or to not move.
I got rid of my Facebook account with people I know in real life. Instead of getting rid of them all together, I handed it over to Hope. My family is pretty emotional abusive. I started a new account where I can be a grieving mother openly. Labor day can be emotional. It’s the anniversary of me loosing my hair to chemo. A reminder at times our two daughters are missing. When Hope, our oldest was in kindergarten, she refused to let me drive her to school because I had to transition to the wig and she was embarrassed. Some years, I get more emotional than others. Our first daughter Avery would be 13 years old. I should be dropping her off at middle school. Addison should have started the first school for elementary. It hurts. It comes back. You are never 100% cured. I have been working on extra projects for Rare Disease Day.
One of the no shows at Joy’s birthday pulled a stunt. Hope gets a private message for the mother, my husband’s friend. His goddaughter got accidently pregnant and gave birth to a daughter, when I was learning about donor egg. The little girl is having a birthday. So, I said something to her about not showing up for Joy’s birthday. I work on Sundays. Literally, no apology, but are you coming to our event. Really? I said something to her about it. It ends up she had to work. That was fine, but why didn’t you tell us? I tell her I work so she starts pressing me for an answer about my husband and kids. I said to her, here’s his cell phone number you need to ask him directly. Literally no apology. We are going to different social events. Time for new friends! Joy walked for the first time too. What a weekend!
I dropped my daughter Hope off this morning for her first day of sixth grade. She went back with braces. Immediately, she was greeted by friends. I held my breath, when they noticed the braces. I breath again when one of them said, “Cool!” Hope is no longer in pain all the time. It was really hard on me to see this for awhile. Last year the former 6th graders freaked out the 5th graders by telling them that they will eat worms on the week long overnight trip to a camp to learn about science. They did an awesome job freaking them out. I meant to get gummy worms for her last day of 5th grade. I was too busy with the house. I had a package to give her. Unknown to me, they put the spacers in and the gummy worms are a no no with braces. I thought about it and thought about it. This morning, I gave her the gummy worms with a big hug. Welcome to 6th grade. Before she said, ” Mom I can’t have this.” I told her I was going to cut them up and see if I could melt them down in the mini crock pot as a science experiment. Maybe we can make drinks for you. She smile and giggled.
It was a long summer of fighting the mold in the house. I have been able to get the lingering odor by the cellar door to decrease. Somedays, it’s gone. The truth test will be after the winter. It was crazy of me to stay up all hours of the night to clean, I was worried about the family’s health. The house is not in sell-able shape. The outdoors need vinyl siding. I need to paint indoors to a more neutral color. What is going to really hurt is painting over the murals on Joy’s bedroom wall. Hope’s handprints made the rainbow. My husband and I used our hands to make the sun. Hope at times says to me, “I don’t want to move.” I have people I talk to. This house was 17 years of our lives. The other night, another reminder of why we need to move. I heard a helicopter over head and saw two police cars with lights. I said to Buddy, our dog. “Sorry, I don’t think we are safe outside.” I do love aspects of our city. I can’t stand looking over my shoulder and trying to figure out if that is a state police helicopter over head. With the mass shootings, I am aware moving the kids doesn’t mean it will never happen somewhere else. Just last year as school was getting out, two residents of my city were firing at each other in the gas station around the school in that beautiful town Hope was chosen for.
Joy’s birthday at the bowling alley was an irony in itself. I texted people, who said they were going. Here is what made me so angry. Eight no shows. Two additional people late canceled the night before. I was right 10 to 15 people. My cousin who needs services decided to leave shortly after being there. I was trying to reach out to him. My husband was so angry. On Joy’s birthday, I woke up at 5 AM with anger. I am the type of person, who follows through. One was the daycare owner and her family. I kind of sent an are you okay message. I was told she “forgot.” Funny, the other day, you said you were going. My husband’s god daughter and her child, no showed. My friend at work who I paid for the floor, no showed. All these people were texted a few days prior. Listen, I didn’t approach the subject with all of them. Someone started a conversation with me and I told the person, I didn’t even notice you didn’t brother to come. I am starting to hold people personally accountable a lot more for their actions or no actions with me. It was embarrassing to pay the bowling alley so much money and then ask them to pay us back. They knew and I swear whatever the excuse, it was embarrassing to hear my husband. The bowling alley refund us no questions. I have had insomnia all summer long due to screwing up my own sleep schedule.
Here is the irony. One of my friends is facing another cancer diagnosis. She was there. A friend who had turned his life around and was there. He brought the kids a video game card. A friend we made through Hope’s activities touched me. Two $25 checks, one in my honor to the cancer organization. The other check was written in honor of my children who died from rare disease. I cried when I saw their names not in my hand writing, because there is no greater honor for a bereave mother to have someone else acknowledge the life of their child.
We also have an old oatmeal can where we collect change. The change is turned into money and donated in memory of our children. We call it the Angel Fund.
I finally reached out to my OB about the insomnia. I started decreasing my caffeine intake. It worked beautifully except the fire alarm went off at 3AM the day after Joy’s birthday. Our dog has been suffering with some type of GI problems all month. He really got sick at 5AM on Saturday. We sent him to the vet’s and he is on meds and special food. W expect a full recovery. It was caused by my husband switching his diet quickly. Sunday, I got 8 1/2 hours. Then I went back to 7 hours on Monday. Last night I was up for two hours in the middle of the night. I suspect I have the warning signs menopause due to the chemo.
Joy keeps looking like today I am going to walk, but she hasn’t yet. She had a good physical. We talked about weaning her from formula and the bottles. Doctor agrees with me about her not needing toddler formula at all. They did blood work today. I didn’t want to do it yesterday with her sister there. She barely cried.
My husband and I are going to start getting involved more now. We have lost 3 friendships per year since our first daughter died. Time to move one and trying to bring old ones back to life.
I need to also go back to Co-Dependents Anonymous to get support. I keep putting it off.
So many summers were ruined by my diagnosis of infertility. I learned before a family vacation to Lake George NY that my eggs were… How to say this? First word was that comes to my mind was the word Bad. So let me try this again… My eggs had low chance of conceiving a viable pregnancy due to my age and chemo treatment. That sounds better.
I took it really hard. We had been trying with donor sperm already. It came to a head on our last day of vacation a few years ago in New York. Our cell phones were struggling in Lake George. I couldn’t find a pen, we were at a pool. Literally grabbed my lipstick and wrote the number on my hand. Insurance declined the doctor’s request to do a procedure called ICIS. (The sperm is shot into the egg instead of it being allowed to swim around in a petri dish.) First, I am frantically looking for paper and a pen. I am thinking people at the pool had several thoughts about me. Look at the woman at the pool writing a number on her hand in lipstick. Hot date? No, the fertility accounting department called me. The vacation got even worst. I decided to let my health insurance have it. Of course the signal kept dropping but I tried from Lake George, NY to Massachusetts. Of course, my heart was broken.
My husband and I had years to prepared and come to terms with donor conception. We grieved it couldn’t be his sperm. I felt myself grieving every pregnancy loss, negative pregnancy test and my genetic self. I also had agreed to medical menopause during chemo treatment. The genetic test was drawn for us and lost during the time I was diagnosis with breast cancer. Later we learned we could have used my eggs. Insurance will not pay for fertility saving treatments for cancer patients. There was no guarantee it wasn’t my eggs fault for the rare disease. So, I knew the results were not good but I choose to try Lupron before chemo for medical menopause. The theory is.. If your ovaries are shut off, chemo will not attack them. I found myself grieving I had gone through months of hot flashes during chemo. I was hormonal 36 and I turned 60 something over night. Not a pretty picture. Then we the chemo ended, it was a rough hormonal journey back to 37 (I had a birthday.) It was all for nothing. I walked through the park sobbing. It was over.
We went home. I woke up in the middle of the night in tears. My daughter had asked to go to the Red Sox game. My anxiety was so high. I was grieving it all… The deaths of our daughters, the loss of using my husband’s sperm, the loss of my eggs, the miscarriages, breast cancer and every negative pregnancy test. At this time, I belong to a breast cancer support group for young women. It happened one of the younger women in the group got pregnant. In my grief, I was struggling. I did say congrats. It was the third text about morning sickness that I lost my mind. They honestly couldn’t get it. I texted them and told them about my grief. I told that I felt I couldn’t be apart of the group anymore. One member texted me that I was “selfish.” My anxiety rose. Then the snoop/friend at my job started texting me. We were in the bleachers. I am not a fan of any sports. I wanted to cry and scream. Here were all the happy people because the Red Sox were heading to the world series. Here I am asking, is it over yet? My husband said, they just played the national anthem. I drove them nuts…. What’s and inning and how long does it last? How many inning are there?
I struggled with smoking after bad news about pregnancy tests and fertility treatment. I felt like everyone in the bleachers were caving in on me. Finally, I left to have a smoke because my anxiety was almost to hospital level portions. I was fighting the tears without little success. I don’t know who the boss is at Fenway. I asked for them to show me where to smoke and he was kind enough to let me smoke with the employees.
Thankfully, Maria, my good friend was around and we were private messaging each other. We have never met in person. We had a pregnancy loss at the same time in 2007. She lives in Michigan and I live here. We follow each other in social media.
I survived and left the breast cancer support group. There were other issues with the group. Hope was five when I had breast cancer. One woman had breast cancer before her daughter and decided to never tell her daughter. She told her daughter we went to school together. My daughter just had to ask tons about going to school with this woman. It put me in a uncomfortable place, because I try not to hide anything.
Another summer later, we never knew when we were leaving for treatment to the embryo donation program on the West Coast. Last summer, I was pregnant due any day now. I am telling you the Red Sox story for a reason. Hope asked to take dad to the Red Sox game again. Like I didn’t ask when was it over enough? I decided I owed them that. We are going.
This year is different. We are scrubbing walls and finishing the family room. I have been doing this since February. I haven’t gotten much sleep. I started the family room when we were getting ready to try in the summer of 2003. No history of any problems. I was glowing about pregnancy not even trying. I was buying things for the baby. Rare disease? Never heard of it. Sadly, Avery died a day after birth from rare disease. I blamed myself. I blamed the paint and chemicals. I refused to ever finish the family room. We are getting close to being done 12 years later. At points, I hugged the painted walls and cried. It wasn’t my fault. We were the first family in this world to be carriers and not have the disease ourselves. Lately, I have been trying to work on forgiveness for the psychological harm I did to myself. I want to name the room after her. All this cleaning and remodeling is tearing me up.
I long for summer. I am hoping to be done with the house soon. We didn’t know the toilet was leaking in the bathroom. The plywood to the floor was replaced. I am cleaning the walls in case the mold traveled. I just wanted new floors. I am excited about the family room soon to be done. Joy is our last child. It’s a full circle of 12 years of our lives. Lately, I have been feeling sad about selling the family home next year. Hope is entering her last year of elementary school. There is no afterschool programs after next year. This city is not safe. Hope was lucky to have a chance to go to school in the next town over. It’s time we live there. This was the home all my five babies that I lost were suppose to come home to. I love the new floors. Joy’s room was painted in murals. It’s going to hurt saying good bye.
I have luggage already with Father’s Day. My father abused us and left. I will be displaying my mother’s picture again as a symbol to honor her again. She did the job of two parents as a married single mother. Yes, I typed it that way. We are talking about trips. I look forward to days with both my girls. I don’t like sports. We are surprising my husband with a Red Sox game. Hopefully we enjoy it! I just started a new job so we plan to do things here and there. We won’t be taken a whole week off together as a family. My husband and I grow stronger as a couple.
I loved this person so much. I waited for a number of years for our big day. About 3 years ago, something happened. I realized he was loosing his hearing. I reached out and reached out. I was called every evil name in the book. Worst of all, I learned he was complaining openly about me to others. That’s when the mistrust began. I was already shut off to the wall due to infertility. So, I shut him off too. I stop asking to go out to diner, because he refused to confront his mother about helping out more. We started just exchanging money on our all our important dates.
I grew tired of arguing, I stopped cleaning the house. This wonderful relationship turned into us becoming room mates. I reached out to an old therapist, who told me she thought he was autistic and not loosing his hearing. I was told you don’t meet his needs. He doesn’t meet yours. I held that secret for years that conversation. Last year, he has hearing tested. Oh my… I was right. He had to have a head MRI. I was ready to no show. In the 11th hour, it bother me not to be there. So I went. The MRI was fine. He lost his hearing and He went a few times to cancer appointments with me. I was strong and I held up.
My head was filled with happiness on Thursday nigh! It’s been 6 years you have been out of cancer treatment. Every year, we do something to reaffirm our family around the anniversaries of the deaths of our daughters. Thursday night, I was so happy. Tomorrow is that big anniversary! I thought. I went back to smoking last March after quitting for a year and half due to my birthday. I develop a plan to quit again. Today is day 2 and I am smoke free. I didn’t want to cook diner on my anniversary of my diagnosis. This month, I have treated myself to a Reiki class and brought a new trampoline to jog on. The cats used the last one as a scratch pad. Slowly, we have been trying to repair the damage to our relationship.
I kept the thoughts of my anniversary to myself. Thursday night, I was so happy. I crying as I type this. I said to him and my daughter tomorrow is the anniversary of my diagnosis, I will take you out to eat. He did not respond the same, “why do you feel we should celebrate this?” My happy little cloud crashed. My feelings were hurt. Are you serious? After an hour of arguing, I realized it was a mistake to tell them. So I made a excuse about the dog and told him to just get take out food. We had a cupcake and take out. My feelings were really crashed. When I was 25, I got my first house. I was extremely house proud. Then, the miscarriages and cancer came. I got so tired about fighting about chores. My day off was always about chores. I stopped. I put my meditation tape on and said screw it after chemo. Then Joy was about to be born and I saw the house for what it was. Poor child cost a million dollars to be born into a shack. Really Ellen is this what you want? I kept saying I will fix this. I feel the house proud piece of me coming back. Last weekend, I got ill because I hadn’t slept in days. I am worried that I married into an emotional neglectful relationship. Years ago, I went to a support group. It’s clear to me now, I need to go back. I would die if my girls grew up and found someone to repeat this pattern. As for him, I hope for the best. We made this mess out of our relationship, it is slowly getting better. I gave up on the in-laws years ago. I finally talked him into hiring a babysitter. Sunday, I am joining a different support group for daughters who lost their moms. Next year, I will asked them to go out to eat no explanations. I quit smoking yesterday, when it is a few weeks, I will tell them. He has a habit if we argue to tell me to go back to smoking. Right now, I am on a good path to quitting. As for my trampoline, it’s been months since I jogged. He forgot to place the order, so I took care it. I need to depend on me more. Note to self.
Over the weekend, I disclosed a major family secret to one of Joy’s godmothers about how my brother-in-law when my sister was pregnant became verbally abusive. My sister got married and she accidentally became pregnant too soon. My brother-in-law had all those major degrees in English with dreams of writing and directing movies. He works as a security guard. I had an awesome job as a secretary for a government organization when I was in college. When I was 19 years old and diagnosis with thyroid cancer, I decided I didn’t want to become a nurse. I decided on counseling as a career path. When I went to grad school, I turned down a job offer for a full time secretary position. I felt this was my calling in life.
I had an awesome mother who married a man with major mental health issues. This man is my biological father. As a teen, I read through some of his hospitalization paperwork. He was diagnosis with Paranoid Personality Disorder. He was extremely verbally abusive. You got sick. You were against him. He verbalized to us his children that we were never wanted. I had both kidneys fail as an toddler. I spent 2 or 3 months hospitalized in Boston. I needed specialized schools to developmentally catch up. Later, it was discovered when I was a teenager that I had a learning disability. I struggle with the written language. I love writing. I was placed a grade behind in school due to my illness. I was older than the kids in my grade. I hang out with the older kids. I idolized my brother and sister who was 6 to 7 years older. My mother was involved in a car accident when I was 13 years old. She never walked right ever again. It lead to a serious of other falls and she died with some horrible form of dementia when I was in cancer treatment. I have felt different all my life.
My mother had a dream. When I was 18 years old, my father wanted me out of the house. My mother told him to leave. I still had a year of high school. I was an honor roll student. My grades dropped so bad. I graduated with a D in high school. I was always concerned about my mother because we needed a restraining order against my father. It was Alateen that saved me. My grandparents were the alcoholics but I found a group of loving and accepting people. I graduated and started working in my field. Then our first daughter died of a rare disease. I lost my job. My brother and sister verbalized some horrible statements about her death. Every month was a negative pregnancy test and a empty womb. Then I give birth to my daughter Hope. My brother and sister showed up at the end, when there was proof she was healthy. Immediately, we had problems. Worst of all, my brother had physically threaten someone, which I didn’t know. I left my daughter Hope in this person’s care. My gut was sending warning signals. Others were telling me that I was over reacting. I listened to others. It was a major blow up. I made the decision to end the relationship with my brother and sister for Hope’s sake. They didn’t come to help, when I had breast cancer. My mother died. I never hear from them again.
A few years ago before my last cycle with my own eggs. My aunt called to tell me my father died. I have been searching for information on this off and on. It’s hard when you are told you can’t have children with your eggs. It’s own grieving process. I stopped talking to others at church, in the neighborhood and at work. I cried when others were not looking. I was polite, but I barely spoke to others. More relationships began to fall apart. I use to lay in bed all day and cry. I looked at my career and my life and I saw everything I didn’t get. Some of the old thoughts started surfacing. I didn’t want to celebrate my birthday anymore. When I turned 40, my last cycle with my eggs failed. We had one affordable option across the country known as embryo donation. It took months of financial saving for this. Joy was not the typical embryo donation. The program uses both egg and sperm donation.
40 was tough, I have no family outside of this house. My sister sends all our birthday cards late on purpose. She has never seen Joy, but she sent gifts at Christmas. Both my girls were born in August. I was trying to contact my friend about the embryo donation program. He committed suicide two weeks before my 40th birthday. One of the ways, I survived growing up was to stay very close to the family pets. So, two of my cats died about two weeks apart around my birthday. I feel the emptiness of my siblings not here. On the maternity ward, everyone had visitors. I had Ken and my daughter. Easter is this weekend, I hear people saying I have 20 family members coming. The four of us are going to a restaurant for branch. It’s my birthday weekend and a lot of people will not remember. My brother and sister, whom I idolized as a child will not be found. My heart is broken.
Over the past few years, I am trying to move from crying about what I don’t have. I am focusing on my children. I go to mediation class. I don’t tell people my life story. I tell bits and pieces to see if I am accepted. Monday is my birthday. I miss my friend who died. I miss my mother, brother and sister. There is this whole. I had beliefs my life would be so different when I grew up. I am connecting with other through meditation and spirituality classes. I said to Hope about a Saturday daddies book baby group. She is young. She told me to join a new mother’s group. I am worried I would not be accepted.
At my age, I done forcing others to accept me. I am the mother of two angels, who died from a horrible rare disease called campomelic dysplasia. I am a infertility survivor. I survived recurrent pregnancy loss, male infertility and female infertility. I am a young breast cancer survivor. I am turning 42 years old. I don’t have a big family. Everything I had is earned. I get intense sadness especially during my birthday. I am getting to that point. I am different. I am special because in the words of others with rare disease, I am a rare mother. I deserve to be treasured. I have been crying for weeks about my birthday. I hope I can get to that place of acceptance, gratitude for what I have and see myself as a beautiful person. Amen from the Agnostic!