Midnight Thoughts: From My First Daughter Anniversaries (What Would’ve Been Her 19th Birthday and now is the 19th Anniversary of Her Death)

I was just thinking how much of Avery’s death impacted Hope’s young life because a group of people couldn’t get over themselves. My first daughter died the day after birth from a rare disease. They couldn’t think outside the box, which was themselves.

I had to literally rescue my child Hope as a baby from doctor who needed to live in bubble to grow a sense of any boundaries. The worst devils have the most angelic names. Trust me he doesn’t remember this anniversary of her 6 month physical, which taunts me forever. LIt separated me from my nieces and nephew forever.

I learned a lot of really tough lessons about life. I am in agreement with all I did when she was 6 months old. It was the anniversary of Hope’s 6 month physical on February 15th? What was the purpose of telling me my blood brother and sister hated me for Avery? Last time I checked we were the parents of Avery and Hope. No one has ever taken our parental rights away. The toughest choice of my life my daughter or my nieces/nephew. Legally, I couldn’t do anything. I literally cried for a year without sleep because of that decision, when Hope was younger. I see Hope graduating this year.

My brother and my sister really crossed the lines. They thought they could criticize me and tell me to stop crying, when I should have been crying. They thought they would just show up. When Hope was born, they started barking orders like they were there all along. It was the hardest thing I ever did. My heart skips beats for the nieces and nephew that I was forced to leave behind to save my own daughter. I had no legal standing and I was her mom. I understand Narcissism and sibling abuse like a few other can. You don’t want to be here.

From these huge losses, I realized how co-dependent, I was. I got myself help. I saved myself. If that nightmare of an appointment never happened, I may have not realized how much I needed to change. It was my co-dependent behavior that all them took advantage of. To quote Elton John, I am still standing!

Pandemic: Adjustment and Gratitude 10 Years Later As A Breast Cancer Survivor

I had to rewrite my schedule a thousand times during quarantine. I just got time to write. Human daycare , dog daycare and high school closed. My husband working from home. Joy brought home this awful cold. In time for the Quarantine.

I witness a day at my new perdiem job before society locked down. The day went from 8AM to 8PM. I was suppose to leave at 4:30. Instead I drove home on an empty stomach to say good night to my daughters. I had worked 6 days straight. At another perdiem job, the eve of the shut down. My co-workers who testing my boundaries left and right. On top of it, I had to decide on self quarantine. How does one quarantine when you sleep on a futon in the living room with two kids at home. I have no bedroom of my own. I slept or attempted to sleep in my car parked in the driveway on a cold March night. I had to drive away so my preschool daughter wouldn’t know I was there, so she wouldn’t approach the car. My high schooler had no school that week. My preschooler had daycare for another week. A few days later, I was told the good news, I never needed to quarantine. If you know Murphy’s law, it was a good thing that I did. If I didn’t, I could see the nightmare of an ending.

At first, I had these grand ideas about home preschool and the high schooler being home. March is tough. I remember that I have a brother and sister that I am cut off from due to their mental health issues and possible addiction problems. We have a secuirty system to monitor the house not only because of a crime ridden city that I call home. It’s to make sure the rotten apples of my family does not attempt something vengeful to our cars or home. Every birthday I mourn having a family outside of the home. Worst of all, I lied to my aunt that I moved out to keep the kids and husband away from vengeful incidents to the car and house.

It’s been years, I cry to have a loving family instead of the story of escaping domestic violence.

So the youngest brought home a cold from daycare. She had conjunctivitis. A few days before my 46th birthday, I got it. She is energetic and inattentive as Early Intervention said. She is 4 now. She has had tons of nightmares about the virus.

I had multiple asthma attacks, a stuffy nose and a broken heart for my birthday. The youngest was obsessing about the cake. After 1 millionth melt down later at 1PM, I bounced the birthday cake on the table, told them to eat it and declared I would never again celebrate my birthday. I have since apologized. I don’t want to celebrate my birthday. Every year, I hate March. I mourn the loss of loving family relationships. I do have the love of my children. I discovered this year that my mother had put my sister’s birth memory in my box of stuff. I couldn’t throw it out. I see her as a living being with feelings. It seemed immoral.

My temperature went high. The oldest got sick. The youngest had conjunctivitis in both eyes now. I agreed to get a test for this virus. Three tubes of conjunctivitis meds for all 3 women. Another adult back up was unavailable. The asthma woke me at all hours. My virus test was negative. My oldest was strep positive. I was getting worst. I have worked telehealth since last summer. I felt like I was drowning to death every time I spoke. I would get air and I had to teach home preschool. That wasn’t even the coronavirus. The youngest was getting into everything. I had to buy a lock box. I had to take everything away.

My condition? DEPLETED! Nothing from nothing is? I had a double ear infection and a upper respiratory infection. I think it was viral tonsillitis and laryngitis. I kept working. The family vacation in April was canceled.

Boundaries needed to be set. I brought bike locks for the kitchen stools. I locked them together so the youngest couldn’t move them. I got a hook for the cellar door to work in my office and a foot locker to lock the items the youngest wouldn’t leave alone.

I had no tears. Tears require energy for me. My aunt promised to help me return the document and she changed her mind. My mom accidentally also gave me my father’s sister’s childhood film. I found myself calling my father’s aunt. I hadn’t called her in 10 years. I had to avoid questions about why I had no clue about my brother or sister. No way of returning it. They have not seen or heard from my father’s sister. Do they know he is dead? Peacekeeping is a difficult task. I was the only one hurt. I wanted to ask why am I hated. I didn’t. It was in my head.

You need a real projector to view that one! We are cleaning the cellar to add to the family space in the basement. Neither inpatient perdiem jobs have called me back. My husband said please don’t worry about it.

Quarantine has been a transition for me. I love my Co-Dependents Anonymous meetings. I can’t go because. I work a split shift. Some hours during the school day. Some hours at night. I had to rethink everything. I was the high school hall monitor, doggie daycare staff and the lead preschool teacher. Then, there was my paying job. My husband and I have not been close in years. It is an functional relationship.

The smell of alcohol on his breath was occurring I began to notice. Last week, I asked him if he was drinking again. He said he was. Where would I go? Where would he go? He tells he brought me something. I have a ton of things. I need another reliable adult, who will be there if cancer returns. One to drive me to my mammograms. I am not telling my oldest. This was the third time. Now, I have lost two jobs and gained three non-paying ones. There is no safety concerns. I cried most of last week late into the night. When you don’t have daycare and you make less than minimum wage what can you do? My mother would take me in if she hadn’t died.

My mammogram was rescheduled for a time when daycare is ordered closed. I need benadryl to make it through the test. I called the local hospital and the big hospital. My gut hates mammograms. They are a strange security blanket for this breast cancer survivor. I asked to reschedule to September. This week, I was suppose to take the girls to New York to celebrate surviving 10 years later after the breast cancer diagnosis. Instead, we found a park in the western part of our state and we will do take out.

The biggest disappointment has been no preschool graduation for my youngest daughter. It was a week before my oldest daughter was suppose to graduate from preschool. I was diagnosed with breast cancer. Her ABC’s were A for your angel siblings, B is for the breast cancer your mother has. C is for Chemo. I lost my hair as she started kindergarten.

When my youngest came into the world, I thought I can’t wait for your preschool graduation. I have decided we are having a preschool graduation at home. She is graduating with the dog. 🤣 It’s about time that the dog graduates, he is six now. It’s keeping me busy. It makes her happy about cake and ice cream. The youngest’s ABC’s are different. A is away 6 feet from others. B is be careful to wear a mask and wash your hands. C is for coronavirus.

It’s odd. Every blizzard, I worked my inpatient job in cancer treatment. One job was 14 years of my life. There is a real disaster and I am home. I usually running into the crisis and I feel guilt for not being there. I see names of people who have died that I know and hear of people that I know with the virus.

I did learn that every morning that I need to mediate. I need to get some form of exercise. Every Saturday, I need a good drive to call Co-Dependent Anonymous friends to stay away from my enabling behaviors and people pleasing ways.

Ten years ago, since another daughter died same rare disease. I was diagnosed with breast cancer. My mom, who loved each one of my birthdays died. For months afterwards, I would have these anxiety provoking thoughts come from no where that my oldest daughter at home had died. I would burst into tears. I rebuilt my life.

My youngest applied for the school system kindergarten my oldest goes to. There is no plan B. I think both jobs are gone. I am anxious that I will be at an memorial service every weekend after the quarantine. All those grand ideas? Reality doesn’t work that way. Preschool home school needs to be flexible. If I need Sesame Street, I need Sesame Street.

My 10th anniversary isn’t going to happen as planned. Ten years ago, I didn’t ask to be the first documented family with this rare disease that took two children away. I didn’t ask for breast cancer or for my mom to die. I lost an acquaintance at church due to cancer during the quarantine. She and her significant other happened to be at the hospital every time my oldest angel daughter had an appointment. He died shortly later. Both had cancer. Here I am with those miracle two daughters. My oldest is heart broken about dance comp season not happening and summer camp canceled. My youngest cries for her friends. A bed is a bed even if it is a futon! The dog has daycare this week. Educationally , I don’t know what this means for either daughter. I need to do something about my functional relationship. When another child died and the breast cancer came. I had the irrational thought that I was being punished. I am grateful for my life. A lot is in the air, I am going to hope for a joyful world in every home.

Today: A New Relationship With My Birthday

I have learned so much by going to Co-Dependents Anonymous. I grew up with a father,who had serve mental illness. We were poor. My mother and grandmother had college dreams for us girls. They didn’t push my brother. I am not in contact with my siblings due to their addictions. My brother is a businessman. He made himself. He never went to college.

College was this magically place as a child. You went there and a house, kids, jobs, white picket fences, a cat and a dog appeared after you were done. I had a lot to learn as an adult.

I had been born a beautiful healthy child. I recently looked into my baby book. I walked at a year and talked too. There was a horrible stomach virus that hit the house that year. Forever, left marks on my life. I had to be hospitalized. Some time in the night, the hospital realized my kidneys were failing. My mother did not have a phone, because my father hadn’t paid the bill. The hospital quickly transported me to a hospital with an Intensive Care Unit in Boston. They sent the police to notify my mom. I was semiconscious at times, which required multiple medical staff to work with me. They called me tiger.

I needed multiple blood transfusions. The word that I may need a dialysis was thrown around. It was six weeks of hell for my mother. She observed scenes of newly bereaved parents screaming. What happened to make the kidneys fail?

My father’s sister deemed me mental retarded for life do to the illness. My siblings became jealous of me. My well off grandparents blamed my mom for not cleaning the house. She blamed them for owning an pest control company that sprayed the cranberry bogs.

My mom decided she would put me in a play and pack with a heavy lid to keep me safe. I needed to run and play. The school system stepped in and I was sent to specialized school programs to help me catch up. I wasn’t ready for kindergarten on time. I would have been in the second grade. The school decided first grade was the best place for me. The kids wanted to know if I stayed back. I internalized all this. My mother said I was a miracle. Not everyone else felt the same.

My father didn’t want children and he verbalized it to us. When I was 18, my father gave my mother an ultimatum. I was 18. Their job was done. Leave me or he was leaving. My mother stood up for me. She said no. He stopped paying everything. One night, the landlord was going to toss us out. My father left and threatened to have us killed. We spent years in court. He would follow us in the court house when the restraining order had to be renewed. One year, I wrote a letter to the courts. We were granted permeant a restraining order. Father’s Day hurt for years. No father of my own.

When I finished my masters program, I realized that I hadn’t been raised the same as other kids. That’s when I started people pleasing. I figured that I would get ahead by following the crowd. The universe and just plan bad luck had other plans. I became a bereaved rare disease mom. Just one month after Avery, the first died, I turned 30. My cycle started that very day. I couldn’t get up. I sobbed so hard. I wanted a baby. Years of being told I was not wanted by my dad and I came home with an empty uterus and arms.

People uttered their opinions of Avery. It was not their disaster. It was our daughter. Not anyone else’s. We were her legal guardians.

I got pregnant with Addison. Addison was original due a few days before my birthday. Her nick name was, “momma’s birthday gift. She was born still a week before Thanksgiving. The same rare disease. Six months later, I became a breast cancer survivor with a mission. The tiger in me was speaking. I wanted two children. For the 8 years of infertility, my birthday became a reminder of a child that I didn’t have.

Birthdays are depressing for me. I lost two of my strong holds when I had cancer treatment. My dance teacher who battled cancer all her life died, My last cycle with my own eggs occurred in March. My best friend who suffered with infertility, relapsed on alcohol and killed himself just 14 days before my 40th birthday.

I love my pets. That’s how I survived a house of physical abuse by my father. One of my closest cats died a week before my birthday. Almost a month later, her partner in crime and mate died from stomach cancer, The second cat was our beloved Floridian Maine Coon cat. I made a risky choice to continue onward through embryo conception. It was a huge financial risk for us.

From embryo conception, we got pregnant with our daughter Joy. Her pregnancy was almost the same as our oldest daughter Hope. It was a few weeks shy of hers, because Joy was born the end of August and Hope was the middle of August. I announced Hope’s pregnancy on my birthday. In 2015, I announced we were pregnant with Joy.

The emptiness of my birthday returned. I find I grieve the lost relationship of my siblings due to addiction. People tend to forget. I would miss my mom who was her own brand of silent beautiful tiger. She would say, “I can’t wait for your birthday in spring.” She was just 15, when her mother died of a heart attack. It left her and her 4 other sisters to fight in the world to survive on her own. She told me I brought joy into her life. Sadly, a week before my birth. My cousin was born and died. My mother made my cousin my godmother.

I survive many loss anniversaries being a rare disease bereaved mom. I find it helps for me to get involved in projects geared to kindness and advocating for rare diseases. My birthday seems to echo all these lonely places in my heart.

I have been in Codependents Anonymous a year now. I went from people pleasing behaviors to social withdrawing. I am more of a introvert than I ever was. There is a piece of me that feels less than. On March 28th, my birthday, it awakens the empty places. The places of grief.

I am thinking of ways to survive March. Maybe life didn’t happen as planned. My life is not over. It is precious this adventure called life. There is lots of beauty and danger. I haven’t exactly figured out what is my personal meaning and what a healthy relationship is.

I am thinking what I need to do is lower my expectation of the day. I never give thanks for those who were there when I almost died at 14 months. Today, I am donating blood and donating money. I am hoping this rebuilds my relationship with my birthday. If I sit around and grieve the losses, I am somehow agreeing with the message that I am not okay. It’s simply not true. I need to love myself.

Embracing Rare As A Inward Beauty:

Out of the billions of people who live in the world, my family was the first documented family of dominantly carrying this horrible rare disease called Campomelic Dysplasia.  As a teen my mom warned me of teen pregnancy, I thought it was a given that if you behaved so to speak that children would just come and live happily ever after.  When I decided it was time for my husband and I to have children, I had a pre-pregnancy glow.  Everything had to be perfect.  After all, a little prince or princess was sure to come.

On November 14th, 2003, I lost my innocence about pregnancy.  Here we were compilating if we should ask if it was a boy or a girl.  The ultra-sound tech was silent almost cold.  I was on top of the world.  My husband and I had not gone on a honey moon after we married.  Five years later, I had the baby I always wanted and we had plane tickets to London, England for a honeymoon the following day.  My world was shattered.  Fate choose us.  The doctor pulled me into the room.  I am still asking well is it a boy or girl.  She told me the ultra sound showed multiple birth defects.  They didn’t think I would go to term.  They didn’t think the baby would survive birth.  A part of me died on the spot, I arose and I was born a mother of child with a rare disease.

We went through all the genetic testing and we went to London England.  In the early morning hours of this devastating news, I made the argument to my husband, “If the baby is to die, let’s show this baby the world!” We went to London.  I fell on my knees at Westminster Abbey to all the great royals and I begged for my child’s life.  Avery was born late February unexpectantly since she was due in April.  She died a day later in the arms of her parents.

Afterwards we talked about the hell it would be if it ever happened again.  We had Hope our oldest in 2005.  She was perfect in every way.  Hope was a name we were going to use for Avery.  The doctors had difficulty figuring out Avery’s gender.  Neither of the names that I choose were the right name for this child.  I picked Avery instead because it was a unisex name.  It wasn’t that popular in 2004.  Both my daughters Hope and Joy have friends named Avery.  I see it as a spirit of Avery finding these girls to add friendships to her sisters’ lives.  One of Hope’s friends has sisters.  One named Avery and the other Addison.

We went on to have try again for another child.  I had repeated late miscarriages.  People had opinions not always the path I choose.  I am remembering my own sister telling me if I miscarried Hope to be glad because after all we wouldn’t want genetically inferior babies.  She told me to embrace my losses because it was Mother Nature’s way of making sure only the genetically pure survived.  My mother FYI repeatedly stood up for me.  She warned us against such statements.  My brother told me that I shouldn’t cry because I was told by the doctors.

I lost many jobs, friends and social statuses due to my convictions.  Avery was my child.  This was my tragedy.  None of my losses are to be used to address social issues.  It was up to my husband and I to decide as her parents the best course of action.  After so many losses, people get inpatient.  COME ON JUST BE GRATEFUL FOR HOPE!  GO ADOPT!

Often in life, we have our own choices.  As a society, we need to work on accepting others have choices.  It is their choice.

I went to work full time.  I could not find childcare for my daughter Hope so I could presued infertility treatment.  The genetics once again chopped my losses into statistics.  It look like just pure bad luck.  Our health insurance would not pay for the medications. We live in a mandatory state for infertility insurance the procedure was covered.  However it was a bad economy at the time and the insurance policy for pharmacy meds was not in state with laws about fertility coverage.  There was the legal loop hole.  I switched jobs and we saved.  We finally had the $5000 for the medication for one cycle.  I didn’t get pregnant and my RE looked at my meds and told me there was not enough meds for another cycle.  My husband’s sperm count got better.  We were told to keep trying on our own.

In July of 2009, just a few days after our 10th wedding anniversary, the pregnancy test was positive.  Sadly October 30th, we broke medical history.  The one event which could never happen again did.  Our child Addison had the same rare disease and she was expected to die.  Addison’s nick name was Momma’s Birthday Gift.  She was due a few days before my own birthday.  A week before Thanksgiving, I was induced.  She had no heart beat.  I held her cold body that day. Here I was vaginal giving birth, when all I knew was a C-section.  Six months later the blood on my bra was a breast cancer tumor.  A week after chemo, we learned our family had broken medical history and there was a dominant carrier.

It was not an easy switch to go from active in fertility treatment to cancer treatment.  I was scared out of mind.  In the early days of my cancer treatment, I thought it was a sign from God that I should die with my daughter Addison.  In those irrational days, I felt like a failure as a human being.  Then through divine intervention, I had a great dream.  I was at Plymouth planation having a picnic with all my babies (including those I lost.)  The sky was blue and I felt so peaceful.  Then the nightmare began.  A knight out of no where began to attack only me.  I ran into a cave.  This knight had no mercy.  When I was defensiveless and fearing my own death, the knight reveal it was my paternal grandmother.  She grabbed me by the chest, “You don’t really want to die.” She threw me the sword.  It’s laughable because I am not athletic at all.  I grabbed the sword.  I was ready to fight.   She called me by my real name, “Get in there Maryellen and fight!  It will kill you!  Let me care for the babies.” Just like that I grabbed the sword and I was ready.  It was a horrible noise coming for me.  I can’t describe it in words.  I knew I was surrounded.  I was convinced I could win.

I survived with a kindergartener, working full time and breast cancer treatment.  My mother died half way through chemo.  In 10 months, my baby was dead.  Beloved pets died. I had to switch jobs fearing the loss of another job and my mother died.  I was in cancer treatment with conviction, “someday, I am going to the happy maternity ward.” I carried this bib that said my mother is a breast cancer survivor to keep me inspired.

I have been reaching to other bereaved parents.  I am not going to lie.  After cancer treatment, the pain of the losses taunted me.  I had my convictions.  There is another child and I was going to find her or him.  I stopped talking to others.  I became the queen of small talk.  When I was allowed into infertility treatment again, I shallowed the pain of negative pregnancy tests.  Hope cried every time some one had a baby or became a big sister.

Finally, I was told by the local infertility treatment would not continue.  I internalized all these failures.  I stopped caring and cleaning (laughing).  My days off were spent looking for answers to bring that other child home.  In 2013, I boarded a plane to California.  The first cycle failed during a family vacation.  I spoke to no one but a trusted few.  On March 28th, 2015, I got to announce a new pregnancy.  Joy is three years old now.  I have never felt quite right in my skin.  I feel different.  Does it need to be ugly different? There was a different disaster brewing at home.  All of sudden in the mist of this miracle, I was staying up all night to scrub walls and trying to kill off the black mold.  Finally this year, we have not seen signs of mold.  (Cross your fingers.  The basement has flooded a few times this summer.) We are aware of the other disaster.  My husband’s uncontrollable drinking.  Sometimes the answer is deeper than you want.  The answer is not just the object of desire.

I have spent these last three years trying to rebuild Camelot.  My husband has been sober a year now.  The effects of all these battles have other losses.  I went back to a support group.  I am at a fork in my own road of rebuilding.  I hate being the mother of the first documented case.  The loneliness is crippling.  The anger can be strong.  The sadness can pull you beyond the pit of despair.  I saw myself and my existence as ugly.  My oldest suffers from social anxiety and puberty.  My youngest has a sensory disorder, which no one in the medical community acknowledges.  There is the work/home balance which I struggle with.  Life is not a perfect condition.

I do have a sense of humor.  Somedays, I say in my tour guide voice.  This is the famous tiny house of the C family.  The mother didn’t believe in housework.  Over here, they threw everything in a pile, which is famous for the shape and texture of making not caring into sculpture artwork of hating house work.

In my fork, I am in this place.  This one all of me that screams I am ugly.  I lost multiple pregnancies and the last thing I want to do is be a “normal” member of society.  I made a promise to a God that now I am agnostic and I question.  It was a promise to my angel babies.  I could have shut down and let death take me at the end.  In reflection, my soul died in 2009 to 2011.  It flatlined.  On August 25th, 2015, I became aware of what my pain had caused.  I owe both my children the biggest apology.  I can no longer travel this road unattached to society.  For three years, I have put this house and each member back together.  This time, I need to embrace myself as a rare beautiful mother, grieve my losses and live life to the fullest with interactions with others.

Today is my Birthday…

In 2009, the unthinkable happened.  We buried another child due to Campomelic Dysplasia.  We become the first medically documented case of genetic Campomelic Dysplasia.  I was loosing my job.  I was able to find another job.  Six months after my daughter died, I was diagnosis with breast cancer.  I had just got another job through a previous employer.  Half way through chemo, my mother and cat died.  I had to get a new car the same year.  A number of appliances had to be replaced.  I worked and my daughter went to kindergarten.  We went to all her activities.  I wore my wig.   The day after I finished chemo and radiation, our ferret died due to cancer.

For many years afterwards, I ignored my home.  I spent my weekday off from work driving our daughter Hope to school.  I would come home and lay in bed until it was time to pick her up.  I no longer cared about the home or housework.  My soul was empty.  As the years passed, it look like we were going to be the couple who never brought home a child from infertility treatment.  My last cycle failed in March with my own eggs.  A friend who helped me so much during my cancer treatment and inspired me died from cancer.  Another friend relapsed, he took his own life two weeks before my big 40th birthday.  My favorite cats died within three weeks of each other due to stomach cancer before and after my birthday.  I painted a smile on my face.  My world was uncertain.  There was the possibility of another child through embryo donation on the West Coast.  I struggled with coming to terms that this child could not be conceived by my egg or my husband’s sperm.

When the embryo donation worked, my youngest was born.  In pregnancy, I realized how much my depression caused our home to become a shack.  I couldn’t fix it.  My oldest grew up in a shack.  Where are you Ellen?  The million dollar miracle child came home to a “shack.”  I promised my children that I would make this old house into a beautiful home for them.  For about a year now, we have been working hard to fix this house.  I am trying to paint the living room.  We are into problems.  Today, I am not painting.  Last year, I cried daily until my birthday.  On my birthday, the oven went causing a stream of electrical problems.  I thought about this.  My father was very abusive.  He never wanted me and he verbalized it.  I am sure my friend who took his own life would not have wanted to not become the meaning of my birthday.  Through it all, I am alive.  I am grateful for my life.

Although, I have done some things that I need to come to terms with, this year, I am not crying.  At some point, I stopped getting angry and crying.  At some point, I realized I need to give myself a life that I wanted.  So, I stopped looking for my family to step up, I took the wheel.  Some would say, I took the car way off the road.  I am coming to terms with myself.  Where are we going next?

This year, I am not staying home to see who calls, who posts on  facebook  or if the oven goes again for another year.  This year, I am enjoying my children.  I have a whole day of errands and activities.  After all those years of hard work to have my children, my best birthday gift is with them!

My Jaw Dropping Moment

When my daughter was 4 years old, our family went through our own personal crisis that lasted about two years.  It started with my daughter Addison’s death a week before Thanksgiving in 2009.  I was laid off my job and needed to return to a former employer.  Months following her death was filled with genetic testing, employment problems and car problems.  Then the cancer diagnosis came.  I tend to skip these minor points.  My mother’s dementia was worst and worst.  I was in constant arguments with my siblings.  The week I had enough and her doctor looked me in the eye with agreement, she died from natural causes.  I was ready to file with elderly services and it would have been a vicious argument with my siblings.  My brother would have tracked us down like deer hunter.  This is the reason, I ended contact with my siblings.  I didn’t trust them.  I do pray there comes a day we can all come home and whatever is ailing them (addiction/mental ill) ends.  I was in cancer treatment at the time chemo and working full time.  My daughter had just started kindergarten.  Her world fell apart.  The baby died and she learned about cancer quick.  Her ABC’s were different.  A was for Angel Addison.  B was for Breast Cancer.  C was for Chemo therapy.  I carried guilt for not being able to spare her from these events.  Hope my oldest will say, “Mom, I wish I was 4 again.  You know before Addison died.” Her preschool world became a world with death and cancer.

My mother died in the middle of cancer treatment.  I never got to burry her the way I felt she deserve.  I felt she deserved to be buried like a Princess.  I was tired and I wasn’t going to risk our safety.  The cancer meds kind of sucked out my energy.  Honestly, that’s think of this like a survival story.  I had all I could do to make it day to day.  My in-laws began to refuse to help me.  I was so scared my first chemo.  My oncologist explained he didn’t know how I was going to react and I could get sick any point of a treatment cycle.  I was put on maximum meds.  I had been infertile for years, I wouldn’t use an over counter pain pill.  Those meds, my body had the opposite effect.  I got sick at the end of the cycle.  This was that moment that shook my being.  It happened at 2AM, I covered myself and the bathroom floor.  I had no energy.  I screamed once for help and no one came.  I went to scream again and realized it would wake up my daughter.  Then I remembered the tooth fairy was suppose to come, but I forgot and fell asleep.  I sat there covered for a few minutes.  I picked myself up and gradually clean up.  Now to notify the tooth fairy so to speak.  Too late! I heard my daughter stirring as I was in her room.  Hope began to cry the tooth fairy didn’t come.  So, an amazing  miracle occurred that night.  No fan or anything was going.  A breeze came and the letter to the tooth fairy through across the room.  I may been dehydrated from being ill.  I was hugging Hope and comforting her at the time.  I remarked quick, “Did you see that letter fly?”  I whispered in her ear, “It was the tooth fairy.” Sure enough the money appeared right next to us.

A few friends at work tried to help.  My in-laws wouldn’t help out a lot.  I felt energy drained.  So, I didn’t speak up for myself.  I felt like I was in shock too.  In 11 months, so much happened.  When the treatment ended, I was left with flash backs and the anger of it all.  I wonder is there a God or a Heaven.  When Joy was born, I felt like I was begging on hands and knees for help for my own C-section.  It does bother me.  I thought my marriage was over.  I wouldn’t see my in-laws for years.  I told them off.  It scares me to death about my kids, what would happen if the cancer ever returned.  I watched my dance school teacher die and leave behind her 12 years old daughter.  The entire family stepped up.  I don’t have an entire family.  My eighty years old aunt would do anything for me.  She has fallen several times.  I missed my mom so bad when Joy was born.  Joy has acid reflux and she wants to be held and swaddled so often.  Sometimes I get overwhelmed.  I am trying to fix this house.  I have all these dreams and stuff that was waiting for the baby to come.

I am writing all this build up to this simple event. My oldest actually emailed my in-laws a few things. I monitor her account and recently saw the sent folder due to a mix up in emails.   They have been so wrapped up in my sister-in-law’s divorce that we have been forgotten for years.  My husband brought the sidling estimates to my in-laws.  Here is my jaw dropping moment.  My father-in-law says, “we want to help you with this. Time to even things out.”  My jaw is still open.  Will this happen, I don’t know.  I will say that I need to watch my mouth more.  The anger built and built into resentment.  When I go to speak, it tends to come out like a Banshee scream.  In the past year, I decided to just not dwell on it.  They are who they are and too much of my energy was be taken up by this.  I told my husband.  Look we can continue to talk about how unfair this is or do something about it.  So it was surprising yesterday that we didn’t ask for help and we are going to be getting it.

 

 

Feeling Stuck

Where does this family go after Joy’s successful birth?  My husband is a good co-parent.  The years of genetic tests, breast cancer, the loss of multiple pregnancies and his refusal to take care of his health problems has taken a toll on our marriage.  It is like there has been a silent divorce not only with him but his family as well.  I was always the prepared one with a plan.  Then our beloved daughter died named Addison died, breast cancer came, two beloved pets died and my mother all within 11 months of each other.  When the cancer drugs and I healed after all the treatment, I realized my mother, daughter and a few things died.  For years, I shut the windows and doors.  On my day off during the week, I would lie in bed the entire school day.  It was like living in paradise and awaking to a war torn country.  Another attempt at putting us back together failed.  I grow tired of this.  I loved you enough to take your name.  Your family sung me a million promises upon our union.  I have stood by you as we became the first documented case in medical history.

At this point, I am back to square one.  My own mother refused to take care of herself and her dementia.  Her clear moments prolonged her diagnosis.  Plus, she never was a real danger to herself until she fell.  It’s hard to see this person has grown this attitude that listening to me is an option.  I am brunt out from my mother almost 7 years later.  I may never have that relationship with him again.  The one that swept me off my feet and inspired me.  I sleep on a camper’s bed.  He has several food intolerances and allergies.  He will not comply with testing.  I should have made him sleep on the couch.  12 years later, I awake to my back hurting every day.  I have been suffering from insomnia.  I look at younger couples that wine and dinning each other.  It’s been 8 or 9 months since I got a hug.  I have no where to go.  Leaving is not an  option.  We co-parent.  I keep hitting this wall of utterly agitation.  I do have the love of my kids.  The dog loves me.  When I hit that wall.  The emptiness awakens… I feel myself grieving all that I promised myself as a girl.

I have been thinking of putting the move on hold.  There are all these huge bills left from un-paid maternity leave, several problems with our house and the embryo donation program.  I need something more than my addictive addicted siblings can give me.

The daycare center for Joy and I have settled our differences. Joy is waiting for a placement at a home daycare, which will save us serious money.  The crisis with the family dog has settled.  I was suppose to stop using Nicotine Gum, but I think I am going to lower the dose and wait for the stress to settle more.   Am I going to be happy in that town next door where Hope goes to school?  I don’t want to say there is no improvement between us as a couple.  However, it’s been quite a few weekends that I felt I bite my tongue.  My payroll was screwed up on job 2.  I only work a day a week to cover activities with the kids and spending money.  Some it I have been saving it because I learned my lesson the hard way with an old commission style job.  The screw up in paychecks screw up my chance to do some trainings in my career path, because in some human services jobs you are required to pay for your own trainings.  It feels like I am stuck in a power struggle between two programs at the hospital. Yesterday, I see myself needing to fight this outside the place.  I was extremely stressed.  I called because I need to know someone cares.  I got a “too busy.” I find myself craving adult friendship and a good hug.  I keep getting nothing.  Our souls do not speak.

This month started with a fight over money.  Things were tight.  Now they are tighter.  We are getting quotes and looking at our options. I am going back and fourth on career choices.  I know what I want.  I have half a map.   Dusting off the old plan to find friendships for myself.  I have found myself back to the original thought.  Save yourself Dame!  I did attempt to have him involved.  It went nowhere.  Done waiting for a super hero!  I can do this myself.

The Emotional Labor of Labor Day:

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!

Summer is Over (Unofficially)

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.

Follow Up On Last Post

Last year, I took a seminar on Speaking Your Truth. I reflected on my sadness about the year the baby died, the breast cancer came and my mother died. After that year the following year, I had these negative thoughts that would just appear out of no where that something bad had happened to my only living daughter. It was so really. I became obsessed with is there an afterlife for a while. There the anger came back. The anger is lessen. However, when we were going on those trips to the West Coast and in fertility treatment, I stopped telling people all together. The failed cycles and miscarriages were my bitter secret tears. I silently cried. We say this now, those concerns were weeks of my life. When I took that seminar, I realized often I have been not saying my needs. I get m Instead of holding secrets, I expressed them. My husband and I have been on quite a journey filled with medical tests and waiting for test results. We learned who the carrier was. This year is the year of the mold in the house could be seen as irony for our pain literally our own brand of the black plague. I stopped cleaning and closed the house for years. I was very depressed after cancer treatment. I have spent every minute trying to fix this. I been telling people we feel alone. Then, I sent out the request. Only one person is going? Really? I have been there for so many. I almost canceled the whole thing. Then, Hope gets a migraine last night and my anxiety hit the ceiling. When you loose two children, it’s always in your mind it can happen again. We are the first documented case in the world. Sometimes, it’s hard to connect with others. I became the best small talk expert in the world of blowing people off. Anxiety was really high last night. I told him some things and he told me some things. I think it’s going to be a long process of healing for us. We’re not giving up. I have been going to these meditation groups and reaching out, but only allowing others to get not in arms length. When Hope as a baby had horrible caregivers, our trust of others went down hill. I am looking at the rejections today and I said to my husband, let’s reach out to make friends again as a married couple. There is this group, I like that is about family and self improvement. I spoke to my husband and we are going to try it. I need to go back to a support group. Basically, yes we were lucky to have a baby twice. I think deep down we are looking for a home. More than a house, a spiritual home of friends with acceptance. Being the first documented case has quite a large amount of luggage with it. I don’t sit on a pity pot about the first documented case. I say we better step up to the plate. There may be a second and third documented soon. I think people have moved on and we as a family need to move on too.