Tag Archives: #miscarriage

Your Pink Elephant Is Real!

I sat through two appointments today about what to do with my youngest, who is 2 year old and having attentional/sensory issues.  This week has been a whirl wind.  I am trying to catch up after having a bad case of the stomach flu.  My oldest had an appointment too, due to her anxiety over middle school.  She is going to be going to counseling for  a bit.

It’s like this. Last fall, we paid a $1000 for the front end of my car to be rebuilt after a tire popped on the highway.  Thankfully, we walked away. I started hearing more noises lately.  It’s an inspection sticker month.  I asked them to look for the source of these noises.   I am hoping they just say your crazy lady.  I returned to get more $1000 estimates on more work to be done.

I was hoping the day of my 2 1/2 year old evaluation I was hoping to hear I was crazy too!  My gut is often correct.  The worry is setting in.  She is two and half and she needs services for attentional/sensory issues.  What is her future going to be like?  What will kindergarten be like?  I feel the guilt, the worry and the blame.

Remember something, my first daughter died from Campomelic Dysplasia.  I was a Rare Mom first.  I learned rather quickly how to advocate for Avery in the 14 weeks we knew.  It happened again.  I advocated for Addison.  Shortly later the breast cancer came.  We are not talking a rare disease or cancer.  Weather it’s migraines or sensory/attention issues, this rare mom is up for the challenge, because Avery Bravery taught me so.  Even through these are more common problems, my brain is on it!

Next week will be a little emotional for me.  It’s my birthday.  I am not grieving getting old.  I grieving my losses.  My father was extremely verbally abusive.  I knew that I was not wanted at an early age.  My mother gave me all she had.  It was my saving grace.  There is still a piece of me that makes me feel like a loser.  It is at this time a year, I miss my mom and my angel children the most.  I see what others have.  The negative thinking is having a field day in my mind. The empty parts of me light up with intensity.   My sadness has lessen compared to other years, when I would wake up in tears around my birthday.  Some days the emptiness of his words punch through.  I have plans to quietly celebrate my day.  This weekend with friends.  Next week, I will celebrate with the girls on the actual day.

Lately, my career path options has been popping up.  My resolution was to bring our family to a healthier path.  I signed papers for the school system to look at my youngest daughter.  She only has about 5 months with Early Intervention.  More time pressures on my schedule at work are possible.  This week was filled with antagonistic comments. I couldn’t fight them.  I feel like I work harder than I need too.  There are other options to make my life easier.  I don’t claim to have the perfect balance.  After Campomelic Dysplasia and Cancer, I don’t have the same priorities. Surely, there must be more options.  Life can’t be this hard.

There is a housing shortage.  All this hard work to get out of this city.  The houses without needing work are too expensive.  The thought of moving out of this house into another fixer upper depresses me.  We put so much into this house.  It may not be this year the big move.  I am hoping.  The last big project is the bathroom being redone.  No house is without work to be done.  Hopefully, we find that dream house and move on.  The other town is top preference.  I was told if my daughter could walk to a bus stop, they would consider transporting her.  Not so much is up in the air as compared to other times in my life.  I am going to hope.  I may take a plunge into a new career move.

PS-The doctor thinks Joy may have some milk protein allergy going on.   She is doing way better on milk free milk like Almond milk.  The eczema cleared up on her skin Her acid reflux meds are fine.  She recently had regular milk by accident.  Her behavior was uncontrollable and she had diarrhea.

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Gratitude For My M.O.M: All I Learned My Babies Taught Me

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.

#NIAW2017 Our story: The Journey of Hope & Joy

I am going to write a letter of thanks to women and men, who are donors.  Before I do, I am going to write a brief summary of our journey.  Fourteen years ago, we decided it was time for a family.  Before being pregnant, I glowed.  The year before we tried, I made sure everything was done.  I visited churches looking for the perfect family church.  I made sure I was healthy.  I brought baby items.  It was time for a baby.  I was so naïve at my precious age of 28.  I thought couples had sex and you just got pregnant.  I completely knew nothing of ovulation and timing.  It was disappointing the first month, we tried.  Nothing.  So, I read online how to get pregnant.  I got ovulation kits and within one month, boom we were pregnant.  At 9 weeks, I had a threatened miscarriage.  I woke up bleeding.  My husband and I headed hysterical to the ER.  The baby was okay.  We made it to the traditional 12 week mark and made the big announcement.  I say this with tears we were so innocent.  At the 18 week ultra sound, we were joking around and laughing.  We were play arguing about if we should learn the baby’s gender.  We were so excited.  The day after the ultra sound, we were heading to London for our honey moon (We couldn’t afford when we got married.  Life was great!

The ultra sound tech didn’t say much.  We were in a good mood.  After the ultra sound, I remarked to my husband, we didn’t get a picture.  The doctor called us in.  I said, “we never got a picture.”

The doctor looked grim. “The baby has multiple birth defects.  I don’t think the baby is going to live long enough to reach birth.” She said.

I can’t remember much after that. I remember screaming “no” like my soul was being shredded into pieces.  I remember falling and the doctor catching me to make sure my head didn’t hit the counter.  We were left through a back door to an immediate appointment in Boston.  I couldn’t stop crying and calling people.  We got the hospital and my husband had to lead me across the parking garage, because I couldn’t find the elevator.  At the hospital, they asked me for my license and for several minutes, I would go into my purse and couldn’t remember what I was looking for.  I begged them at the hospital to tell me that the baby just had Down Syndrome.  I had an amniocentesis test.  I asked them for a picture of the baby.

I came home.  My husband asked if we should cancel the trip.  I looked at him and said, “If the baby is to die before birth, then let’s show the baby the world.” We did go to London during the Bush demonstrations.  I couldn’t talk or breath.  I spent all my money (our cell phones did not work.) on the payphone trying to learn news.  The stress was so high.  We went to the wax museum.  One of the rides took our picture.  In the picture, it was a couple with broken hearts.  I never brought the picture.  I refused to have my picture taken the entire trip.   I went to Westminster Abbey, I kneed before every statue begging for our baby’s life.

Avery was diagnosis with Campomelic Dysplasia. We went through all the trisomy diagnoses.   I was born a rare disease mother.  People voiced their opinions about what we should do.  Our baby was becoming  was becoming a symbol for others about arguments for social issues instead of our baby and our choice.  She was born prematurely.   Avery died a day after birth.  I had never witness a human die.  I felt strong guilt for agreeing to do not resuscitate orders.  I never doubt there was a God.  As I watched Avery struggle for each breathe.  I became obsessed with is there an afterlife? I began to doubt God.  Many friends ended their friendships with us.  I think I hang out with a lot of emotional abusive people.  My own brother screamed at me for crying because, “this was my fault for not listening to the doctors.”

I had flash backs.  I finally left my job because they couldn’t get that I couldn’t be around babies.  I was getting flooded with memories of my baby’s last breath. When I reached out, I was told I was doing this for attention.  So on my last day of work, I did a very brave thing.  Someone brought in a baby.  I asked to hold it.  The memories were flooding me.  I held my composure.  The second, I was out of their sight.  I bite down on my fingers and sobbed wildly.  I kept trying to get pregnant over and over.  One negative pregnancy test after another.  I attended every one of the recommended doctors appointments and I was assured it was a most likely a fluke of nature.  Campomelic Dysplasia was usual thought of to be passed on by a parent with the condition.  Since neither of us had dwarfism or seemed to have dwarfism.  The other way was either my husband  or I had a genetic problem with sperm or eggs.  I was jobless and babyless.  At times, I told my husband that I no longer wanted to work in the field that I loved.  Thanksgiving day, I kneeled before Avery’s grave and begged for help.  I was no longer with the children that worked with and loved.  My Avery died.  My uterus was empty.  So, I kept applying for jobs in and outside my field.  I was going to a fertility center for tests.  Then, on December 1st, 2004, I learned I was pregnant.  My mother-in-law and I wrapped the test as a birthday present for my husband.  I started a new job.  Being pregnant again was not easy.  I played loud happy music to keep my anxiety down.  On August 11th, 2005, our daughter Hope was born.  I didn’t know if she was a boy or girl.  We stopped asking the gender question and gave thanks for a healthy child.

My brother and sister disappeared from my life.  They are very emotional abusive.  My sister was hiding her own pregnancy.  She said to me, when I upon me telling her the news of my pregnancy. “If you miscarry, I don’t want to hear of you crying. Miscarriages are away of getting rid of genetically inferior babies.  We don’t want genetically inferior babies in the world.”

I learned quickly that I couldn’t continue a relationship with my siblings.  It raised my anxiety.  So I let them go.  Weeks before Hope’s birth, they came back.  I was so positive.  Sadly, we hired the wrong medical team for our daughter.  I did not know my brother had physically threaten one of the doctors, when his son  was diagnosis with Asperger’s syndrome.  This doctor was on a revenge quest.  He treated me differently when I was alone.  He was sickly sweet when my husband was around.  It ended up being a blow up.  My brother calling me all hours of the night to call me, “a liar.” I took Hope to a different doctor.  Would you not know they were affiliated with that other practice.  I considered walking away from my husband and child thinking I was the problem.  I could go to doctor appointments alone.  Finally, when Hope was about 2, I had to ask myself who was paying who with the doctors.  Hope is a straight A and beautiful young lady.  She has a new doctor team and there is no problems.  Sadly, my niece around Hope’s age was born to my sister has several developmental delays.

I could write a book.  I was so convinced our losses were over.  When Hope was 11 months old, I decided to have another baby.  My in-laws felt I shouldn’t try because my husband’s sister was trying to start a family.  I got pregnant.  One nap time, Hope’s cross fell and broke in half.  I felt a strong urge to go to the bathroom.  I was bleeding.  I had a natural miscarriage at 6 weeks.  We tried again at New Year’s time.  The baby was developing normal.  At the 18 weeks ultra sound, I was told the baby had no heart beat.  It was my son Haven, who we could never hold.  He had died silently at 16 weeks.

I began to not tell anyone.  We ended back at the fertility specialist for recurrent pregnancy loss.  We had another genetic consult and we were given the same information.  They couldn’t find any problems.  There was a fade theory about MFTHR genes causing blood clots.  I went on Folic Acid and blood thinners.  I had to pay an co-payment of $300 dollars for the blood thinners. We got pregnant again.  It was Christmas time and at 11 weeks, I was told the ultra sound was normal.  A few days before Christmas, there was no heart beat at 13 weeks.  The baby was estimated to have died days after the 11 weeks ultrasound.  I had a D&C two days before Christmas.  We were heart broken.  Everyone was celebrating the holidays, my husband and I were in tears.  The doctor offices were closed.

Shortly after Christmas, I was crying and shoveling the snow off my car.  I heard a kitten crying.  It was 2007.  Lots of people were loosing their homes.  I called out to the kitten, it came to me.  I showed my husband.  We agreed to try to locate the owners later.  My neighbor informed us that the cat was abandoned due to a foreclosure.  We agreed to give the cat a home until an adoptive family could be found.  The cat had a huge abscess on his neck.  New Year’s Eve, I found myself in a vet clinic getting this poor animal help.  I explained we were considering adopting a child and we would care for the cat until a new home could be found.  I spent my New Year’s playing nurse with this cat, who was recovering from surgery.  Strangely enough, the kitten was born around the time, my son, who I lost at 18 weeks, should have been born.  My energy went into finding the cat a home.  A manger at the pet store agreed to adopt the cat.  I was explaining to my 2 years old that the kitten found a home.  She looked at me and said, “my cat!”

I called the manager at the pet store and apologized.  We kept the cat.  He was an all black cat with a white heart on his chest.  My baby’s name was Haven, who died at 18 weeks.  For weeks, we didn’t know if it was a boy or a girl.  I named him Haven because it was a unisex name.  I thought of him safely with his sister.  We named the cat Raven, who by the way absolutely flies through the house to snuggle me.  He is all muscle.  When he jumps on your lap, it’s like when Tigger pounces in Winnie the Pooh.  Trust me, he loves to walk all over you.

For months, I couldn’t get pregnant again.  My husband’s sperm count and quality was low.  We were told we need IVF-ICIS.  (They shoot the sperm into an egg.) The year was 2009, it was tough financial times.  My husband’s bank was sold.  The health insurance covered IVF because it was in a mandatory state for infertility coverage.  However, the pharmacy insurance came from a state without coverage.  It was getting hard to have childcare for Hope for doctor appointments.  I decided to return to work full time, because we needed to pay for the medication out of pocket.  I felt it would be quick and I would have another baby.  So, we finally paid $3000 for the medication through taxes.  Everything look so positive.  I ended up not pregnant.  I didn’t even have enough meds for another cycle.  My husband sperm count returned to normal.  I was crying so hard.  Months of work for no baby.  We began to try again on our own.

On our 10th wedding anniversary, I was very upset and angry.  I learned I was pregnant again.  I was terrified.  All the tests were normal.  At the 18 weeks ultra sound, a resident told me she needed the doctor to sign off on her work.  The doctor returned and told us that the baby had multiple birth defects.  The night mare happened again.  We had after years of genetic tests, conceived another baby with Campomelic Dysplasia named Addison. I rented in this pregnancy a dropper.  One morning, there was no heart beat.  I was induced the week before Thanksgiving.  I lost my job later that year.  Lucky for me, a previous employer hired me.  Avery’s blood in 2004 was flown to Germany to confirm her diagnosis.  The United States had open a lab.

The geneticist recommended we both get tested.  My test was negative.  It was thought that two recessive genes could cause Campomelic Dysplasia.  We decided to start trying in-home inseminations with donor sperm.  At this time, our health insurance was in another state without mandatory coverage.  We tried one cycle.  I began to notice blood on my bra.  I thought a milk duct infection due to Addison’s still birth.

The doctors discovered a lump in my breast.  It became clear that there was a great chance of breast cancer.  The Friday before Memorial Day, I was told I had breast cancer.  No insurance will cover the cost of fertility preservation.  Since it also could have been one of us making our eggs or sperm wrong, which is impossible to test for, I chose to pay for fertility preservation.  My husband’s blood work was lost.  On the day I had my lymph nodes removed for breast cancer, he had his blood drawn.  I started chemo.  The doctors agreed to let me try to use Lupron to save my ovaries.  It put me into medical menopause.  I had chemo and medical menopause.  I was able to work full time mostly.  Two weeks after chemo was started, the test results came back.  We were the first case in the world to be documented with one genetic carrier.  I could have used my eggs.  It was too late.

My mother died half way into chemo from natural causes.  I found her dead.  I brought a bib that said my mother is a breast cancer survivor.  I wanted to hold on to my dream of another baby.  In 10 months, I lost my baby, got diagnosis with breast cancer and lost my mother.  I would bring the bib to every cancer treatment.  I would cry into the bib.  Somehow someway, I was going to be a mother.  My relationship with my in-laws fell apart.  My sister-in-law declined my offer to be a surrogate mother, which I understood.  During Hope’s 5th birthday party, I learned she had a baby named Maddison.  The names sound so similar.  After breast cancer treatment, I began to have anxiety attacks.  The thought would just enter my head, my daughter died.  I also had flash backs of Addison’s death and my mother’s death.  An old obsession resurfaced.  Is there a God and afterlife.  Six months later, I tried to go back to fertility treatment.  I was told to wait for a year.

I started buying donor sperm through a bank and tried to inseminate myself at home.  Finally enough time elapsed, so I could return to fertility treatment.  The two IUI’s failed.  We tried 3 rounds of IVF.  My husband only accepted job offers with companies who we checked out their health insurance.  In March 2014, I failed my last IVF cycle with my eggs and donor sperm.  We had been looking into all options for egg donation.  Please note either egg or sperm donation is covered in any state.  I started looking into options out of state.  In my home state, it was $50,000.  I found an embryo donation program on the west coast that combined donor egg and donor sperm for embryo donation.  Please note this is not left over IVF embryos.  I began to fly out.  I had to keep everything hush, hush.  It was rumored that I was moving to the West Coast by friends and family.

The first cycle failed.  I tried a fresh cycle, which wasn’t easy.  IVF is hard for us.  We have to come up with excuses.  It was really hard to explain why I had to just pack up and fly out.  On August 25, 2015, I had gave birth to my daughter Joy.  She is a beautiful classic toddler.  Infertility was 13 years of my life.  I don’t miss the silent tears of a failed cycle.  I don’t miss googling if standing on my head will make me pregnant.  I don’t miss trying to stand on my head.

I stayed in the field that I loved.  I was able to return to working with children.  I have a specialization in substance abuse counseling.  My job is mom first.  I have been able to find jobs to work around my children’s schedules.

I don’t forgot my journey.  I try to be available to other families with rare diseases.  I tell my story.  Not for pity.  I tell my story in the hopes of someday, we find more cures for breast cancer, infertility and rare disease.  I want there to be a day that I hear Ms. C, Avery and Addison would have had better quality of life if they lived now.  I don’t want other couples to be the first in the world.  I am mostly agnostic now.  I have trying to catch up on building friendships and making my own family.  I accept my family and in-laws as they are.  I also believe I am the captain of my soul.  I made a promise to God that I would use my breast cancer status to improve life for those with infertility and rare disease.  I also try to advocate for cancer patients.  Most of all, I am mom first.

 

Everything I Learned About Life: Rare Disease Day

I wanted to honor today as Rare Disease Day.  I do not proclaim to be perfect but learning.  My husband cut his thumb, while painting our daughter’s bedroom.  In that moment everything was happening according to plan.  Then disaster struck.  My perfect day with my oldest daughter got twisted.  He could not continue to work.  He needed 5 stitches.  Yesterday, I did not feel well.  I tried to fix this.  The room was suppose to be done on her last day of school vacation.  We set up a temporary sleeping situation.  My oldest struggle to sleep or get her clothing.  I did what I could.

I thought over the film project.  I stayed late at work, while a co-worker helped.  At midnight last night, I started to paint.  The ceiling roller broke in half.  Paint spilled on the floor.  At 4AM it was done.   Our family is the first document case known of passing this awful disease, which took 2 of our children’s lives.  I miscarried multiple times, who know how many were really effected.  I am not going to tell you that we didn’t feel angry or shut down.  Somehow, we had to make a choice.  It was hope or despair.  Life is not perfect.  This morning I was so over tired and sick that Joy missed her first gymnastics class.  This has been a journey of learning to “roll with the punches” and learning when to punch back.  Hopefully, I am developing wisdom on choices of the 2.

My hope is someday to hear someone say, “Ms. C., if Avery and Addison were born today, their lives would be different.  They may have been alive.  Families now can get genetic counseling and mental health services to deal with the genetic information.  Families now don’t have to wait for a loss.  They can seek services before conception and make choices.”

Genes are not all we are made of.  Everyone deserves medical care!  Today, I am make through the day, because we are relatively healthy, except for the cold.  This a lot to be thankful for.

Drawing Boundaries: Happy Holidays

It’s been a crazy month of me working 6 days a week sometimes around my oldest daughter Hope’s activity schedule.  Yesterday was Christmas Eve.  The last Christmas light went up and I uttered a judgmental thought to myself, “like wait until Christmas Eve.” Last week, I worked 6 days to get Christmas Eve and Christmas off.  I was profoundly mentally drained and I couldn’t get out of my own way.   I am married, but my inlaws went their own way a few years ago.  It was strange there for a long time.  They felt I should….  just be happy with this one child.  They uttered to me that I seemed “overwhelmed at one.”  This occurred when I hired a bunch of inappropriate people to care for Hope, who had an axe to grind with my brother.  I did not know what my brother or my sister had done, but the people I hired took it out on me.  Yes, damn it I was overwhelmed.  I thought I hired people, who would care for my precious Hope, who was born after our first Avery died.  I had no idea what a mess of revenge I got myself caught into.  I had really hard time trusting anyone anymore.   It took years to fix it.  Anyways, we failed at delivering a another baby.  My sister-in-law was having one every year.  My mother had dementia.  I was told that I could have one day a week.  When his sister had kids, they gave her 7 days per week.  All this is old news.

I began to separate.  Years past, it became apparent Hope was being hurt by the division as if I divorced.  So this year, I past the olive branch again.  I invited them over for lunch on Christmas Eve. It’s not that I am hoping to get close again.  My mother-in-law has a non-cancerous tumor in her brain.  I am pretty sure it effects her personality now.    I came home after working 6 days straight to find the house trashed.  I was brunt already.  Saying something does nothing.  Lately, I have been working towards removing personal responsibility.  Example: Why is it always the woman’s problem?  Example, I no longer become this fire breathing monster.  I simply say now this is a reflection of you and not me.  After all, you didn’t know we were having guests?  Last year, when the mold was discovered in my house we had a health issue.  For months, I took care of the baby during the day and worked all night cleaning.  I slept for a few hours to drive the oldest to school.  We are talking about painting the interior.  I am clear with someone.  Look mold one thing, but don’t expect this all the time.  I have struggle with insomnia.  My OB GYN told me the length of my cycles are being influence by stress and sleep deprivation.  We didn’t have money for a cleaning company.  It was done room by room by me.  All I learned was never again.

Friday, I got the stomach flu with chills.  I barely made it through work.  My husband got let out early so he got the kids.  It was a struggle to walk the dog.  My body wanted to sleep so bad.  I slept from 5PM to 4AM on Christmas Eve.  The fever was still there.  I took an Advil and I did the best I could.  At the end not everything got done.  We didn’t tell my inlaws because they are germphobic. We did not tell them that I was sick.  Financial I said look, you know these are hard times during the year for us.  Let’s be proactive instead of spending it up and going dry.  Time to save for the holidays all year long.  Every August our daughters will have birthdays.  Put money aside instead playing catch up.

It was a nice time.  Hope went into high gear to help no fights.  We put the dog in the cellar.    The dog barks a lot, except when in the cellar.  My mother-in-law lost a portion of her hearing due to that non-cancerous tumor.  My father-in-law asks about the dog where about and walks into the cellar without asking.  He didn’t say it to me, but he says to my husband, “you need a dumpster to get rid of the stuff down there.  My husband tells me this.  I say to him that I think it is odd to go into someone’s cellar without asking.  I pointed out I wouldn’t do that to my mother.

Maybe, I sound cold.  I am tired of having a major stroke about this house, when visitors come.  Surely, I solely responsible?  I don’t drink beer so I am to be responsible for the beer cans all over the floor.  It’s a new way of thinking.  Don’t want to listen to me.  Let it be a reflection on you.  We have a relator coming Friday to assess the value of the house.  It’s not clear if we can afford to move.  I am not breaking into a sweat for the house to look perfect.  I am not the only one living here.

I drove home one night writing this beautiful letter in my head about why to come home to someone.  I was going to write it.  Buy a special gift and give it to him on Christmas.  I thought it over.  How many times do you need to beg?  The division amongst us was like a slow leaking damn.  No one gave a damn until the damn broke.  Everyone saw it coming, but decided not to stop it.  It happened slowly until the damn broke.  Where to go now?

Remember previous holidays, one Christmas, I had a miscarriage and a D&E two days before Christmas.  Another one, our daughter had just been born still a week before Thanksgiving.  One Christmas in cancer treatment.  It was the first one without mom.  Years pasting, where are you baby?  Will I never get pregnant again?  Will it always be the would’ve(s) and could’ve(s).  It been stressful watching the damn break.  It stressful because of what I want doesn’t quite match the right way and needs of the children.  The aftermath is good and bad days.  I am no longer taking sole responsibility because I am female.  I am spending this vacation with my girls.  I am not saying I am healed completely.  I would not give anything to return to those previous holidays.  I will continue with my meditation classes and seeking outside friendships.  May I say the biggest improvement of the year is the house is no longer a shack.  I hope we continue to grow and heal as a family.  I am going to work on going to be on time.  My OB GYN is having tests.  Hopefully, things go back to normal.

 

 

Mom’s Weekend Out: The Holistic Fair

The wisdom I have learned from my disaster with the lost of my daughter, breast cancer and my mother was to stop expecting others to meet my guidelines. This is not as easy as typed. Someone in my life seems to be shut down for many years after the genetic test results have come back. So, I knew Thanksgiving time was tough. We argued so much over money, that I was anxious about loosing a day’s pay. So, I accidental scheduled myself for 6 days in a row. Life is gradually improving. The house is livable and manageable. My life quality goes up and down. I can not be out on his non-work nights, which angers me. We are divided yet managing. I start verbalizing the sadness. My friends have left. I am going on four years of searching for peace with this relationship where I feel utterly ignored.

I don’t know if he knows it’s the anniversary of Addison’s death. Communication is slow. He lost his hearing. I am trying to accept what is. I need other adults and it seems I have lost many friends. However, if I pretended to be happy… Maybe, I would have more.

The holistic fair was a great time. I wanted to stay there. I learned what I suspected through doctors will never confirm this. I have often felt the isolation and depression about my recurrent pregnancy loss and infertility created the breast cancer. When Addison died, a few told me I could never discuss this. My triumphant moment was finding a way out from these individuals. Although, I could not public list her lost at the time, later an article was ran in our local newspaper about my survivorship and her lost. One workshop connect stress, trauma and cancer. I felt my tears begging for me to cry, but I didn’t. Tomorrow, I am going out again on a conference about bereavement. There is a piece of me that died. There is a piece of me that was born. This is a piece of me growing. Every now and then, I see a glimmer of hope that maybe we will grow again.

At first, I didn’t want anyone there with me. Then, I saw a few families and began to miss my own. Cellar Service did not always work. So, I called and invited the family to come. My 11 years old and he said no. So it shock me when they came. 12 phone calls later, I took an educated guess and found them eating. I didn’t get to go to every workshop, I wanted that day. I got some family time. At least I know that I am not utterly ignored. The ones I went to are going to be reflections for a long time. I have handouts to review. This is the anniversary of Addison’s death coming up. It’s so easy to get negative quick. This week, I am going to focus on one step at a time. Once again, I over schedule myself to work six days straight. I will get there. I am not talking about working. I have a feeling that I am growing into someone. Let check in. I held that anger about my personal no show list for years. It’s starting to grow into a new experience. I learned I am strong and need to continue to work on being independent. I shut down to the universe trying to have that baby. Sadly, I see some of the same behaviors in Hope. Be passive aggressive. Say nothing. I changing me and hopefully Hope will change if she wishes it.

Not Sure Of The Exact Answer: Being Flexible

Having survived the death of my two daughters to a rare disease, multiple miscarriages, infertility, breast cancer and my mother’s death, every day life problems are not as big.  Friday, I celebrated with my friend who was facing a colon cancer diagnosis after breast cancer to hear the biopsy was normal.  The following day was crazy.  I suffer from what would have deemed in the golden days “woman’s problems” after giving birth to Joy.  My cycles are so thick and heavy that it is a constant stress to me embarrassing myself.  I feel like a an overgrown preschooler with a change of clothing in case.  Saturday was a mess.  Joy woke up early.  We ran out of several food items for her.  I had to ran out and get stuff quick.

October 1st is a big day.  October is breast cancer awareness month.  Dwarfism awareness month.  Pregnancy Loss/Infant Loss awareness month.  I spent a long time struggling to get my icon to work to post on social media.

My oldest is 11 years old.  It’s a struggle to teach her to organize.  I woke up to her telling me that she lost her wall adapter (again).  I gave her my charger.  We have been trying to decide if we belong in the town next door where my oldest was chosen by lottery to go to school instead of our city.  Next year there is no middle school afterschool program.  I am trying to figure out what is the best option for us.  The bills are very high from last year.  When Hope needed child care for the summer, it basically took my entire pay check to pay for infant daycare and her child care.  Then, August is their birthdays and we had to tap into our savings.  Somehow, we are going to figure this out.  It is temporary because Hope went back to school so we are not paying for camp or child care.  Summer was always a struggle for us.  When I had my commission job with kids, I lost money to child care for one child.  It’s a sad improvement, but my new job just paid for child care for both of them.

Anyways, we are trying to get more involved in the next town over to check out if that is really where we want to live.  Joy started library group over there.  One mom had her preteen with her.  I am seeing lots of other families with the same age gap between children.  However, I don’t see the children with both the same parents parenting the children.  I got to talk to a few people.  Then we had to rush home.  We got a second estimate on siding.  I learned the city was having a hazardous waste day.  They would not take my leftover fertility meds, but they took the needles and some motor oil from the lawn mower.  I quickly finished up on the fall/Halloween decorations and realized we are late.

Our family was going to the activities in Rhode Island for breast cancer awareness.  I wanted to see the opening ceremony.  We were so pressed for time when I looked for my charger, which I loaned Hope and she didn’t have it.  I blew up.  We got her an Ipad for Christmas and once again it’s an issue.  I get one weekend day with the girls.  We never made it to the opening ceremonies.  I am tried of the Ipad.  We are going to install time limits at this points and if she looses her adapter again, mine is not available.  She has also been power struggling with us about eating breakfast.  She didn’t eat breakfast and ended up with heart burn.  She was told to.  It was a long night.  Then, I get a heart breaking message the Reverend’s wife died from cancer.

We were suppose to go clothing shopping.  My oldest is so tall now.  Sometimes clothing for girls fit her.  Sometimes, she can wear a small woman’s clothing.  Her feet had extremely hard to get shoes.  One foot is smaller than the other.  Some brands will have the last child’s size and others won’t.  I brought Joy all 18 month old clothing for her birthday.  It’s too big.  Literally, no warning from shorts to pants season.

I am also considering we can’t move and I will have to go find another job around Hope’s schedule again.  I started studying for the license to work at the schools again.

I don’t know how it is all going to work out.  I work two programs at the hospital now.  I was asked to take extra hours.  I decided I would for a few weeks.  I hope I get paid for the day I didn’t get paid.  The holidays are coming.  I am just going to have hope that everything will work out.  Our dog is doing better.  The family daycare we looked at may not be the one for Joy.  I am still trying to make up work at home on my days off.  Today is a good day because no child died from rare disease in this family.  Today is a good day because no one was diagnosis with cancer in this family.  Today is a good day, no fertility treatment cycle.   Every day life goes on…

 

 

 

 

 

Rare Disease Day: Meeting With Genticist Gave Hope Some Hope!

My second daughter died from the same rare disease unexpectantly.  After our first daughter died from Campomelic Dysplasia, we did everything we were told to do.   It was not expected to happen again.  We found out Addison had the same rare disease the day before Halloween in 2009.  She died a week before Thanksgiving.  We had our blood drawn.  A tube of blood was lost somehow.  Months and months went by.  The unthinkable happened.  In May, I diagnosis with breast cancer.  They said we would never know who carried it.  We went to the RE and none of the fertility saving procedures were covered by insurance.  Our health insurance barely covered any of my breast cancer procedures.  It was a bad economy back almost 6 years ago.  My husband had to switch jobs quick to cover cancer bills.  His bank was owned by a foreign bank who barely gave him time for his daughter’s death.  They were giving him a hard time about time off for  my breast cancer surgeries.

That year, we survived one day at a time.  I had just lost my job, when I decided to go back to the hospital job.  I was there one month, when I was diagnosis with breast cancer.  The hospital helped me even through I had only been back a month.  There was not time to think these things out.  The family 11 months after the death of our daughter suffered another loss.  My mother died.  There was cancer treatment, work, kindergarten and our living daughter’s activities.  We also lost two precious pets that year.  When it was discovered our children were dying due to a dominant carrier, I was afraid for our living daughter’s future.  I did not save eggs based on cost and genetic information.

I am not a trained geneticist by any means.  I don’t want to get into long explanations that I am not qualified to give.  I am to focus on our emotional responses mostly.

There were several events that lead to our decision to go for genetic counseling.  My husband’s mother insisted she had NF2, which occurred a month prior to my breast cancer diagnosis.  I noticed my husband lost his hearing.  For years,  I asked him to have it check.  Finally he did last year.  He tells me about this NF2 disease.  I am reading and reading about this.  I am seeing major health concerns for Hope.   I was more frightened for our living daughter.  Our new daughter was conceived by embryo donation so she had no known risks.  I feared no one would marry Hope, our living daughter because of her being a possible carrier.  I worried  it was unclear if she would be a carrier.  We struggled as a couple about getting this appointment.

I don’t have a good relationship with mother-in-law.  My husband’s mother has now ignored me for years.  In our year of multiple losses, I begged her for help.  It wasn’t for me.  It was for my husband and my daughter.  She refused to take them for Thanksgiving, when Addison died because it would, “ruin her plans.” She refused to stay with us for my first chemo treatment.  I got tried of the “nos.” She knew my mother had some form of dementia and couldn’t help.  God bless my mother’s soul.  My mother would try to keep handing me money for me to buy myself something nice.  I couldn’t stop crying.  The first chemo treatment, I did awesome for the first week.  The oncologist was right.  I was struck by sickness and I laid on the bathroom floor of my house without any help within two weeks of the first treatment.  I literally did not know what to do.  I didn’t want to wake my daughter who was in kindergarten.  Somehow, I was able to get up and clean up after just sitting on the bathroom floor being ill.  In the mist, Hope had lost a tooth.  She woke up after it was clean up looking for the tooth fairy.  Mysteriously, a strange breeze came and even in my sick state, we saw the tooth fairy come.

I get stuck in the anger of that year.  Why weren’t you there!  I spoke weekly to my in-laws.  It feels like they choose their daughter over me.  Her wife and the daughter had three beautiful children. Two were born as we had the same due date, but I lost the pregnancy.  This has impacted my marriage in more ways than one.  We are not close.  I choose to peruse having a baby for me and Hope.  Since our daughter Joy was born, we are trying to put the pieces back together.

The fears of all those years were discuss in one geneticist appointment.  I did an outstanding job not crying.  It ends up the dominant carrier can not pass this to our daughter.  My mother-in-law still says she has NF2.  My husband only describe one benign tumor, which is not constant with NF2.  She would have more.  I wept a good long time last week even with this good news for all those years of worry.  The geneticist asked me to ask my oncologist about if I needed further genetic testing for breast cancer.  I have been in genetic testing for years now.  Honestly, I know our other daughter had to see a specialist and we have had a lot of illness in the house lately.  A good day is doctor free.   It’s the anniversary of the death of Avery.  I don’t want to do it.  Genetic testing has it’s own brand of grief.   It’s such a social taboo.  I worry about the mental health of people facing this crisis.

I officially decided to not take the new job.  I am working with my two jobs to arrange a work schedule to do what I love for a living and to be with my girls.  I haven’t told them yet.  My in-laws are so involved in my husband’s sister’s divorce.  It’s been months since they have said anything.  I stay focused on the girls and meditation classes.  I want functional peace.  I may never be able to be close to them again, but I want functional peace.  We have our good days and bad days.  I am hopeful….

 

 

 

 

 

 

Looking At Old Pictures With Tears & Goals For The Future:

Friday night was another wake up call that our family needs to move.  Our city has been testing a new system in response to the increasing violence here.  We started hearing gun shot noises.  I am not sure if was a joke or fireworks, but we called the police.  Last May, shells from a gun were found on my street.  It’s been like living in an egg shell and praying it won’t crack.  Joy was crying the entire time.  My other daughter had a hard time sleeping.  I slept with one eye open.

I am trying to get a job with benefits.  I find this ironic.  For eight years of my life, I have been trying to bring another baby home.  Finally, I am successful.  She is barely a month old and we need to look into child care options such as a babysitter or daycare.  Since one of my jobs is commission style without benefits, I find myself not earning enough at times to pay child care for a school age child.  Thursday night, we decided to hold off on getting a dog because it looked like we couldn’t afford the baby sitter option.  After Friday night, Saturday, we were at a pet shelter looking for a dog.

Overall, last week was ironic.  I have been mostly in the house caring for Joy.  My oldest daughter’s activities have started again.  I am seeing people again.  Mostly questions and comments about Joy have been all over the map.  Some of the craziest ones have different ones like people asking me if I am “done.”   One person argued with me that Joy was a preemie because she looked so small.  I lost a daughter at the NICU unit.  Trust me preemies are even smaller.  My aunt told me what my cousin said about me being “crazy to want to have another baby at 41.” One stranger asked me, “are you breast feeding?”  Boundaries PLEASE!  Co-workers from both work places called or text to tell me that I am missed.  It felt great to hear from them.

I met a girl a year younger than my oldest daughter living at home with a genetic disease.  This week my oldest daughter’s vocabulary list includes the words sperm cell and egg cell for Science class.  When did she get old enough for those words!  Laughing!

I keep looking for a new job.  All the jobs are longer commutes.  Nothing in the area.  One step at a time….  I will get there sooner or later…  I got to watch it with the goals, because I am really hard on myself, when I don’t reach it.

I have been talking with my oldest daughter about memories of her as a baby.  We were looking at picture albums.  All of a sudden we are looking at my wedding pictures.  There are pictures of my niece and nephew, the two oldest ones.  I am looking at everyone at my wedding.  My eyes were so young and filled with dreams.  Suddenly, I became overwhelmed with the feelings of sadness, loneliness  and isolation.  So many people died.  So many people couldn’t handle the death of our first daughter to a genetic disorder close to 12 years ago.  I lost friendships and contract with relatives.  I am not close with people as much I would like.  A tear fell.  I found myself sobbing.  In the mist of loosing a child, genetic testing/counseling, infertility and breast cancer, I lost so much in regards to relationships and feeling close to others.  My oldest gave me a hug, but I couldn’t stop sobbing.  I told her, “don’t you ever let anything stop you from a relationship with your sister.”

Rainbow Babies and Blessings!

Rainbow babies are so beautiful that one should never vent about other things in the same blog.  August is an interesting month of memories for me.  My first rainbow, Hope was born on August 11th by planned C-section.  My first daughter died from a rare disease and she was born premature.  It took 8 months to get pregnant with Hope and a fertility evaluation.  All these precautions were put into place to safe guard Hope’s arrival.  Just remembering how I counted the baby’s movements.  A few times the movements would be too slow and I would hold my breath and start over again.  So, we got to 37 weeks.  Okay, baby come when you want.  At 38 weeks, the doctor scheduled a C-section because I was SHOWING LITTLE SIGNS OF PROGRESSION.  All these weeks of concern and I was going and going late.  My grandfather’s birthday was open for a C-section.  I picked it.  Would you not know that as the machine was being shut off, it detected a contraction? I didn’t even feel it!  When I was in infertility treatment, uterine ultra sounds they can see the C-section scars.  Although, my first daughter died a day later.  I treasure this marks.  About 5 years ago, I started chemo in August.  The doctors wanted to start chemo the same week as my daughter’s 5th birthday and I declined.  I started chemo sometime in the last two weeks of August.  My mammogram is due every August.  Today, I got a reminder notice.  I had numerous IUI’s, 5 IVF’s, 5 pregnancy losses and two donor embryo transfers.  Finally after 8 years, this baby is due late August.  The day of my discharge from a hospital in Rhode Island, I should have my mammogram in Boston.  I plan to call and reschedule, but what a beautiful ironic thought of it all!  So next year, I have two Rainbow birthdays!  Birthday parties aren’t quite working out well for our family.  Hope is starting to age out.  I think next year, it will be a private family event.  This weekend, we celebrate our first rainbow turning double digits!  My daughter requested both of us take her actual birthday off and celebrate. Yesterday was my last day at the kid job, but I brought home tons of paperwork.  I tired to stay up all hours of the night to finish.  I finally surrendered to the fact that I needed to bring it home and finish it on my own time, which I am not happy about.  Tomorrow is my last day at the hospital.  Today was Hope’s last day of camp.  My plan is to spend time with our first rainbow and finish the nursery.  There is about two and half weeks left before the next Rainbow’s scheduled C-section.   My heart is so blessed to have two August rainbows to brighten my skies in this life.