Category Archives: Recurrentpregnancyloss

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.

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Accepting Myself As Different: Upcoming Birthday

Over the weekend, I disclosed a major family secret to one of Joy’s godmothers about how my brother-in-law when my sister was pregnant became verbally abusive.  My sister got married and she accidentally became pregnant too soon.  My brother-in-law had all those major degrees in English with dreams of writing and directing movies.  He works as a security guard.  I had an awesome job as a secretary for a government organization when I was in college.  When I was 19 years old and diagnosis with thyroid cancer, I decided I didn’t want to become a nurse.  I decided on counseling as a career path.  When I went to grad school, I turned down a job offer for a full time secretary position.  I felt this was my calling in life.

I had an awesome mother who married a man with major mental health issues.  This man is my biological father.  As a teen, I read through some of his hospitalization paperwork.  He was diagnosis with Paranoid Personality Disorder.  He was extremely verbally abusive.  You got sick. You were against him.  He verbalized to us his children that we were never wanted.  I had both kidneys fail as an toddler.  I spent 2 or 3 months hospitalized in Boston.  I needed specialized schools to developmentally catch up. Later, it was discovered when I was a teenager that I had a learning disability.  I struggle with the written language.  I love writing.   I was placed a grade behind in school due to my illness.  I was older than the kids in my grade.  I hang out with the older kids.  I idolized my brother and sister who was 6 to 7 years older.  My mother was involved in a car accident when I was 13 years old.  She never walked right ever again.  It lead to a serious of other falls and she died with some horrible form of dementia when I was in cancer treatment.  I have felt different all my life.

My mother had a dream.  When I was 18 years old, my father wanted me out of the house.  My mother told him to leave.  I still had a year of high school.  I was an honor roll student.  My grades dropped so bad.  I graduated with a D in high school.  I was always concerned about my mother because we needed a restraining order against my father.  It was Alateen that saved me.  My grandparents were the alcoholics but I found a group of loving and accepting people.  I graduated and started working in my field.  Then our first daughter died of a rare disease.  I lost my job.  My brother and sister verbalized some horrible statements about her death.  Every month was a negative pregnancy test and a empty womb.  Then I give birth to my daughter Hope.  My brother and sister showed up at the end, when there was proof she was healthy.  Immediately, we had problems.  Worst of all, my brother had physically threaten someone, which I didn’t know.  I left my daughter Hope in this person’s care.  My gut was sending warning signals.  Others were telling me that I was over reacting.  I listened to others.  It was a major blow up.  I made the decision to end the relationship with my brother and sister for Hope’s sake.  They didn’t come to help, when I had breast cancer.  My mother died.  I never hear from them again.

A few years ago before my last cycle with my own eggs.  My aunt called to tell me my father died.  I have been searching for information on this off and on.  It’s hard when you are told you can’t have children with your eggs.  It’s own grieving process.  I stopped talking to others at church, in the neighborhood and at work.  I cried when others were not looking.  I was polite, but I barely spoke to others.  More relationships began to fall apart.  I use to lay in bed all day and cry.  I looked at my career and my life and I saw everything I didn’t get.  Some of the old thoughts started surfacing. I didn’t want to celebrate my birthday anymore.  When I turned 40, my last cycle with my eggs failed.  We had one affordable option across the country known as embryo donation.  It took months of financial saving for this.  Joy was not the typical embryo donation.  The program uses both egg and sperm donation.

40 was tough, I have no family outside of this house.  My sister sends all our birthday cards late on purpose.  She has never seen Joy, but she sent gifts at Christmas.  Both my girls were born in August.  I was trying to contact my friend about the embryo donation program.  He committed suicide two weeks before my 40th  birthday.  One of the ways, I survived growing up was to stay very close to the family pets.  So, two of my cats died about two weeks apart around my birthday.  I feel the emptiness of my siblings not here.  On the maternity ward, everyone had visitors.  I had Ken and my daughter.  Easter is this weekend, I hear people saying I have 20 family members coming.  The four of us are going to a restaurant for branch.  It’s my birthday weekend and a lot of people will not remember.  My brother and sister, whom I idolized as a child will not be found.  My heart is broken.

Over the past few years, I am trying to move from crying about what I don’t have.  I am focusing on my children.  I go to mediation class.  I don’t tell people my life story.  I tell bits and pieces to see if I am accepted.  Monday is my birthday.  I miss my friend who died.  I miss my mother, brother and sister.  There is this whole.  I had beliefs my life would be so different when I grew up.  I am connecting with other through meditation and spirituality classes.  I said to Hope about a Saturday daddies book baby group.  She is young.  She told me to join a new mother’s group.   I am worried I would not be accepted.

At my age, I done forcing others to accept me.  I am the mother of two angels, who died from a horrible rare disease called campomelic dysplasia. I am a infertility survivor.  I survived recurrent pregnancy loss, male infertility and female infertility.   I am a young breast cancer survivor.  I am turning 42 years old.  I don’t have a big family.  Everything I had is earned.   I get intense sadness especially during my birthday.  I am getting to that point.  I am different.  I am special because in the words of others with rare disease, I am a rare mother.  I deserve to be treasured.  I have been crying for weeks about my birthday.  I hope I can get to that place of acceptance, gratitude for what I have and see myself as a beautiful person.  Amen from the Agnostic!

 

 

 

 

Personal Reflection On Rare Disease Day February 29th 2016: The Irony of the Gerber Baby

Rare Disease Day, I was elastic.  It was the one day a year, I get to show the world my other titles as Avery’s and Addison’s mother.

A week earlier  on Avery’s 12th birthday, I had a stomach flu.  A few days later it went away.  At 5 o’clock on Rare Disease Day, I had intended to write this blog on Rare Disease Day, instead the stomach flu return with revenge and I was texting SOS messages to my husband who was stuck in traffic because I was so sick.  Finally last week, I got rid of this stomach flu.  I finally back to a normal diet and back to myself.

Avery was our first daughter who died of #Campomelic Dysplasia.  She was due in April 2004.  We learned she had multiple birth defects and she was predicted not to survive the birthing process.  I went into preterm labor on February 21st at 5AM.  Due to a condition called Polyhydramnios, (too much amniotic fluid caused by a baby having multiple birthdefects), Avery was born on February 21st, nine weeks too soon.  My sister struggled with preterm labor due to a Incompetent Cervix.  This has not been my issue.   We had ben warned about this for weeks, so my bags were always packed.  I carried several documents about Avery’s condition incase of emergency.  We rushed to the local hospital.  I got the preterm labor meds.  Then, I was transferred by ambulance to a Boston Hospital.  I still struggle with memories of the ambulance ride from time to time.  The labor had stopped.  The ambulance told me that they would take the scenic route due to Boston’s Big Dig.  As the doors of the ambulance closed, I cried.  I realized I was leaving home.  My husband had to drive himself.  I told him to go slow and to get a coffee, because we didn’t need accidents.  There we were on the scenic route.  I can remember seeing the other side of the entering my city sign and crossing into the neighboring town.  I went back into labor.  The ambulance drivers got off the scenic route and lights flashing all the way into Boston.  The entire time, I did not know if Avery was going to be born dead in the back of the ambulance.  We made it to the hospital.  I had a C-section.  She lived a day and died.

I left the hospital on February 23rd.  I signed myself out against medical advice.  I didn’t want to be at the hospital anymore  My arms and uterus were empty.  My shoes had been lost in the transfer process.  The hospital gave me these foam slippers.  It was hard navigating myself in the snow.  For years, I couldn’t drive down the streets that the ambulance went.  A few times,  on the highway, I will burst into tears at the site of an ambulance going to Boston.  I have learned to cope by praying for the people in the ambulance.  As agnostic as I am, I still pray.

For years, I struggled with what happened to Avery. It’s when I started questioning God.  I had the worst people around me.  I was told to GET OVER IT.  My own brother told me to quit crying about it because the doctors told me what has going to happen and I choose to continue the pregnancy.  I had never seen a human die.  For an hour and a half, my husband and I held Avery until she died.  People could not understand why I couldn’t just see their babies. Some felt I should been able to hold a baby.  My biggest issue was I couldn’t be happy for others.    My brain was flooded about memories of her death.  Just to show them all, I pulled myself together held a baby to show them I could.  I sobbed uncontrollable when they weren’t looking.   I planned everything.  I took prenatal vitamins and careful planned the pregnancy for a year.  How was it our family was chosen for this rare disease?

The doctors do not feel our oldest daughter Hope will have children with Campomelic Dysplasia. She was screened out for NF2 a different rare disease.  All those years of worry are gone.  There is Hope in Hope for the next generation. Joy is unaffected since she was conceived embryo donation.  I am issuing my concerns.  I went through all the emotions and shock a parent does, when a child has multiple birth defects.  I went through years of a lot of feelings of self blame and guilt after Avery and Addison’s death.

People see me holding my baby daughter.  We think Joy has red hair.  She has these sapphire blue eyes.  People say to me, your daughter Joy is  perfect like the Gerber Baby.  How ironic…  I felt both my children Avery and Addison were perfect to as well indifferent to their fatal diagnosis.  All my babies were perfect and loved.  I pray we increase resources for parents, family, and patients going through the being diagnosis with rare disease.  I pray more medicines and procedures are found to help those with rare disease.  When I was diagnosis with breast cancer, I made a verbal agreement with the universe to remain an advocate to those effected by rare disease.

 

 

The Afterlife Of Infertility Treatment

It was about 13 years ago, I started prenatal vitamins.  I went to the OB GYN, my regular doctor and my dentist to ensure I was healthy.  I had just reach a huge career goal after not passing the first time.  I looked at churches, I found one that I liked.  Yes, I was 28 years old and ready to have our first baby.  It’s like watching the Titanic victims line up to board the Titanic.  We opened this Pandora’s Box called we want children.  We found recurrent pregnancy loss, infertility, rare disease, male infertility, breast cancer and female infertility.  Somewhere deep in that box as the demons were freed our Hope and Joy stayed.  So, we got our dream.  For many years, my hobby was to plan and try again for another cycle.  My favorite motto: Everyday I am googling for a baby.  Maybe next month, next year?  Just keep praying.

One year went into another year and another year.  We broke medical history by becoming the first family to carry this awful disease onto our beloved babies.  We kept loosing babies late into the second trimester.  I spent 70% of my time trying to stay and get pregnant.  Now that our dream has come true.  I see the damage to my life.  I took jobs that I could take time off to get infertility treatment.  I put our daughter into daycare to have child care for  infertility treatment.  I work during cancer treatment because I didn’t want to loose money.  Sadly, we owe years of bills for fertility treatment.  Embryo donation was not covered.  Our daughter Joy was conceived embryo donation.  Our neighborhood has turned violent.  We never updated the house, because we needed the money for infertility treatment.  When my beautiful baby came to the world, I had to put her in day care to pay off the bills caused by infertility treatment.

I am still waiting to hear about the new job.  I have been waiting for this new job for months.  Last week, I went to my inpatient company’s party.  I worked full time at points over the past years and per diem.  I still work with kids commission style.   I am starting to wonder about this new job.  I am not getting Saturdays off, which is important to my daughter, who is on a dance comp. team.  I have no benefits.  I literally could take today off because my husband got his bonus.  I wonder are you settling for less?  Two weeks ago, I stop taking prenatal vitamins.  My baby daughter has been very sick with a chest cold.  She threw up repeatedly these past two weeks. We ended up seeing a GI specialist for her.  The GI specialist thinks it’s the cold and the baby is gaging herself, when she coughs.  She just got a nebulizer last week and she not coughing at night anymore.  I don’t know what the job answer for me is.  I worked so hard to get here.  I do have career goals, when I looked into both my daughter’s eyes.  I just want to be with them.  I want to be the mom that is there.

Today was an interesting.  It was the first uterine ultra sound without being pregnant or trying to become pregnant.  Thankfully, no Fibroids were spotted.  I have been having heavy bleeding during my cycles since having the baby.  My OB GYN thinks I will need meds to control the bleeding until menopause.  Every time I enter the state of Rhode Island, I see a sign that makes me sad.  It has a picture of a baby as a sign that there is a God.  I remember being infertile and burying our children.  If you are bereaved, some question God.  I love my babies Avery, Haven and Addison.  A piece of me died with them.

After 13 years of trying and hoping, I had a baby.  The roads of my life are open.  I see how much I gave up in my life in my quest for a baby.  I don’t know where to go.   I am keeping myself open to all the possibilities.

 

Enjoyed Hope’s Birthday Party!

I had the best time at the party.  Many of Hope’s (my daughter’s) friends have mothers, who I enjoy speaking with.  Especially, two mothers who have only one child by choice.   Friendships are very different with only children.  My daughter has struggled with the deaths of her sisters due to rare disease.  For many years hearing others were to become the “Big Sibling,” made her cry.   Hope was my drive to continue in fertility treatment.

My husband’s parents canceled last week.  By the time of the party, I moved past it.  I am just now starting to learn about rare disease number 2.  This NF2 disorder.  I don’t know what is going on with this non-cancerous tumor in her head.  Monday, she again accidentally called the house.  She does not acknowledge Hope’s birthday the day before.

Anyways many of my friends are aware our family lives in separate worlds.  He goes to his family, I am not a part of it.  We are slowly preparing for the C-section.  Only one person may stay with you during the maternity ward stay.  My husband’s parents only agreed to watch Hope for the C-Section surgery only.   I don’t know if they will cancel.  If they do, I am my greatest support person.  He is going to have to go and watch Hope.   So, I asked my husband to get a hotel in the area of the hospital for him and my daughter to stay at.  My friends were upset that I would be alone.  At one point, I would fight hard.  At this point, I am about acceptance.  His family will come to the maternity ward and I will not be treated like family.  Many times, I grieve this lost.  Over the course of this pregnancy, I learned I have many good friends that are my family.  I survived my breast cancer through friendships.  I struggle and grieved the lost of my family.  My husband was upset because he thought his sister was not showing up because she was late.  She came, I am polite.  Our families live in  separate worlds with one connection my daughter.  I don’t know if they will accept the baby, since the baby was conceived by embryo donation.  It will hurt no family of my own will come to the maternity ward.  My plan is to go to the family room if it gets to be too much.  I can’t make his family feel a love for me that they do not have.  Tonight, my daughter begged to call her grandparents because it is her birthday.  I told her she needed to do that with her father, because they would not answer my cell phone number.  He called and the phone was passed back and forth between them.  I am exhausted from them.  My hope is someday, I will grow old enough to have my children marry and to have children of their own.  I will show their spouses love and their children that I didn’t have.  After the baby is born, I will continue to seek spiritual connection with others through meditation.

The home front is quiet.  As long as the topic is child care or house work, we have peace.  The second, I seek a spiritually connection, it’s a war.  He will not draw boundaries with them.  It’s more a friendship than marriage.  Tomorrow, I am canceling my mammogram.  I looked at the hospital website.  The baby will not be old enough for the child care at the hospital.  He has to come and watch the baby.  The effects of his mother having this NF2 genetically for our daughter has been over our heads the entire pregnancy.  The baby is fine thanks to embryo donation.  My daughter Hope, I have no idea what this disease means for her future.  It scares me that any point her body could make these non-cancerous tumors anywhere in her central nervous system as early as age 22.  I texted my husband (texting is a gift since we learned he lost his hearing) how about we try to speak to the geneticist after the mammogram.  So, I am going to try to get an appointment for both in one day.  I will Hope my daughter Hope is okay.

Frustrated By Gestational Diabetes: PA & NY

I don’t want to seem like I am complaining.  For eight years, I have been dreaming of being pregnant and going to term.  Last week was able to hit my 31st week of pregnancy.  When I was 31 weeks pregnant with our first daughter.  She was born prematurely after an ambulance transfer from a local hospital to a Boston hospital.  She died a day after birth due to her rare disease.  The premature labor was caused by the weight of the amino fluid.  Babies do something important to keep the amino fluid from building up.  It’s called “practice breathing.”  Our first daughter’s lungs were considered behind in development.  The fluid in the uterus grew higher and higher.  My uterus guessed wrong that it was time to have the baby due to the weight of the amino fluid.  She was born premature.  I had a placenta abruption in progress.  The doctors did not see it until the emergency C-section.  If I had pushed and agreed to a vaginal birth, I may have waken up in the intensive care unit due to blood loss.  I insisted on the C-section to have time with my first daughter.  She lived a day.  Ironically in my stubbornness  to have a C-section for her, I may have spared myself in the process.

My living daughter was a C-section.  I fought to have a vaginal birth plan.  All these safe guards were put into place to stop preterm labor.  At 39 weeks and 5 days, I had my scheduled C-Section.  In my family, there are a lot of people with learning disabilities.  My daughter has no signs of learning disabilities.  Last fall, she was awarded in front of the school committee an outstanding award in Math.  She is in 4th grade and she has had straight A’s twice.  My biggest problem with her is getting her to RELAX. I have no high expectations.  I was born with a learning disability.  I struggled, but I had good grades.  This need to be ANXIOUS is…  okay it’s a combination of both her parents.  My husband was reading by age 3 according to my mother-in-law.

Let’s bring this all back to this current pregnancy.  At this point, I accept C-sections as a way to give birth.  Sadly my last daughter was born still vaginal before Thanksgiving by induction.  I wish I hadn’t done that.  I had only known C-section and I was traumatized by it.  I wanted to hold her and I would have been able to if it was a surgical procedure.

This baby will be delivered C-section.  I feel like I am giving the best way to the my currentbaby.  I joined this nutrition study to improve my life.  Never in a million years did I see myself becoming a gestational diabetic.  After my breast cancer treatment, I was diagnosis with Asthma.  It was tough to accept even more restrictions due to the gestational diabetes.  I admit to giving the nutritional study a hard time with their recommendations.  I accepted my life as a gestational diabetic.  I had normal glucose levels for weeks.  Then, I  learned someone decided not to support me on a decision that I expressed my heart and soul to.  We had not been close for years, but we “were” able to run the house in a partnership for years.  The following day after a chest cold at 3 something, I had a coughing and wheezing asthma attack.  I had no other choice but to use the rescue inhaler.  It was tough, because I had to run out to the driveway since I store it in the car.  I have lost bladder control to some extent.  I could tell the baby was terrified from the attack.

I went back to my daily asthma medications because I couldn’t do my gym routine.  A few days before the 4th of July, my morning fasting glucose spiked.  Every morning, it was high.  Every morning, I panicked.  My primary job with the kids has no benefits and it is commission style paychecks.  I love it! I didn’t learn the money back for sending my daughter to camp last week.  Last week was a big anniversary week for me of loosing my first at 31 weeks and an anniversary in of my last daughter’s pregnancy.  (She was born still.) I had to work to earn money at my hospital job.  I only had normal numbers one day.  My friend asked me to ask if the asthma medication was throwing it off.  I am still an advocate for this unborn child.  I kept trying and trying.  Nothing worked.  My daughter got a new bookcase, it was broken.  I am trying to get the nursery ready.  It’s still the computer room.  Sunday, my daughter tells me she has a sore throat.  So Monday of this week, we had a good ultra sound.  Yes, I get it my glucose was mildly high.  So, I left a note.  I am still the advocate for this unborn child.  I couldn’t reach the nurse.  Yesterday, I did and it was an ugly conversation.  I ended up feeling blamed and not listened to.  When I make a mistake, I tell people.  Yes, I screwed up a carb count, but not every day.    Yesterday, it was tough going to work.  My daughter was getting sicker, which makes me even more stressed.  I cried and cried hard after that conversation.  I got rid of all carbs and ate cheese sticks for snacks.  I have lost now 6 pounds since April.  My basic question was never answered.  Was this caused by the Asthma medication?

I had to take today off by the way, because my daughter was getting sicker.  I am thinking it is strep.  She lost her voice yesterday.  Today it was worst.  It’s not strep but a mild form of conjunctivitis.   Tomorrow the family is leaving for the amusement park in PA for the competition team to perform for a few days.  On the way home, we are stopping in NY for a shopping trip.  Monday, I need to go to see the nutritionist again.  She spoke to me and told me to tighten up on the carbs.  Nothing seems to make a difference.  I still don’t like I was blamed for it.

Pregnancy Update & An Adult’s Perspective Of Living Without A Father.

I did go to see the OB GYN yesterday.  Remind me not to work and train for 6 days straight.  My brain is fried.  Monday, I caught another cold.  This time, it was a chest cold.  Monday and Tuesday were very intense with the training on a tough subject.  It was also a challenge to be at the training to navigate food and have gestational diabetes.  My co-workers brought doughnuts as a sweet gesture forgetting I am a gestational diabetic.  None of the bathroom stalls had locks.  I went 5 minutes earlier before the break to check my blood.  Someone just opened the door on me as I dabbing blood on the test stripe.  I struggled every morning this week to wake up.  A bunch of doctor appointments so even with extra work, I will be earning a lower paying pay check.  I only get paid, when services are provided.  There is no sick time.  When I cough, I have an accident.  It’s embarrassing.  My daughter Hope was official diagnosis with walking pneumonia.  My diagnosis was chest cold.  This is the 5th cold since April, but everyone insists that I am on enough calories.  I did talk about the preterm labor fear.   Since Hope was born full term, there are no tests to run.  I just need to watch.  It’s hard when you feel you have dropped the ball once.  I finally remembered why this was uncomfortable.  My mother-in-law is very old fashion.  I remember someone taught me how to change a tire.  My mother-in-law said that wasn’t woman’s work.  My grandmother was one of the first small airplane pilots in New England.  So, when we returned from New York City and Avery died in Boston a few days later.  She was angry with me.  Considering that I barely talk to her now… this baby will be born into a different family then the one Hope was born into.

There is no closeness.  The family operates on a co-parenting level like a divorced family without the divorce.  Next weekend, I will spend the entire dance recital with my in-laws and husband.  Something was lost since our last daughter died.  The connection within the family is surface level.  The spiritual component disappeared.  The family is united by a child.  My heart has never forgiven them for choosing their Thanksgiving plans during the death of my daughter, when I asked them to take my husband and Hope.  My heart has never forgiven them for when I asked for help during the breast cancer.  I respect they are his and her relatives.  That’s it.  I am not an evil woman.  So next week will be tough.  They show up for special events and not much more.  I will keep the peace, because I love my daughter.

So tomorrow is Father’s Day, we are not close nor have we been in years.  Tomorrow there is a massive rain storm coming.  NH was CANCELED!  Strangely, Hope and I woke up together today.  An hour later, a new plan was developed.  Hope will have time with her father.   My own father is a mystery in my life.   I was born a “surprise” 6 to 7 years after my brother and sister.  I was not allowed to get sick or to feel.  My mother silently encouraged us to go to “college and get a career.”  When I was 18 years old, I was the subject of one of his sick and twisted choices from my father to my mother.  Leave with me now and we will remain married.  Choose your daughter and your marriage is over.  My mother had true bravery after years of domestic violence.  She told him to leave.  In my struggles with infertility and family who abandon me, it felt like a double edge sword.  I was never loved by my father.  I couldn’t have the children that I wanted.  I spent my childhood life swearing things were going to be different.  Sadly, my daughter was born with a rare disease.  We had to make the choice of worst nightmares.  We had to choose to end life support.  So many times, I wanted to break my own restraining order to throw in his face that he missed the one day my daughter had lived.  So many times, I want to tell him how I would given my life to save hers.  The isolation of infertility and fighting a little known rare disease reminded me of my fight to make a future for myself as a child.  I saw the waiting rooms filled with people who wanted to be a parent so bad, but couldn’t.  This man had three beautiful children.  I was college bound, when he left.  For awhile, a piece of me was at peace.  Another piece wanted to scream no that’s my father.  My grades fell.  I was accepted to college as on academic probation standing.  I turned it around in a year even after being diagnosis with thyroid cancer.  I graduated with academic honors and I was accepted to grad school.  My daughter is so lucky to have my husband as a father.  He is lucky to have her.  There is a question that remains.  Everyone reports to me my father has died.  I felt I could not fight infertility and found out he died at the same time.  No matter what he has done, he will always be my dad.  Perhaps, after the baby is born, I will go to NH and look up his death record.  I am still not ready.

It Never Quite Goes Away…

Not all of us, who experience recurrent pregnancy loss get an answer.  Many times, I thought our family would never have an answer.  My husband and I reflected that at our moment of death perhaps God would whisper the answer to us.  The testing for the rare disease our children died was available in the US.  When our first daughter died, her blood needed to be flown to another country to be tested.  Lately, I am following people somewhere in the cycle of donor conception either through considering it or waiting after acceptance into a program.  I wanted to write a blog about the reasons we choose embryo donation.  Sadly, yesterday one of the few with the information that our baby was conceived embryo donation made an immature comment that wasn’t even funny.  It was crude about sperm donation and it should not have been said.

I have been extremely anxious about watching the numbers of my sugars.  After five different losses, I worry about the health of our baby anyways.    It is not usual for me to face having a gun going off in my neighborhood.  Usually, my daughter Hope is very healthy.  For three weeks, she has had a loud cough and a headache.  The doctors think it is allergies, but allergy medications aren’t touching it.  After watching my first daughter die a day after birth, my anxiety spikes with Hope, when illness goes on and on.  My anxiety appears to double around my cancer anniversary too.  The combination of the crisis of our city facing shootings and illegal gun procession, the water crisis and everything else just got to me.

The baby is doing well.  It goes after kicking my rib cage every now and then.    So, I went to all the doctor appointments Tuesday.  All the stress came out.  I am not by any means a trained nutritionist.  I have been fighting high cholesterol for years.  I have been pregnant seven times.  Three losses in the second trimester.  I only had the glucose test for gestational diabetes only once.  I had to come back and I was screened out for having gestational diabetes.  So, I volunteered for this pregnancy in nutrition study of my own free will.  This is the first time, I was diagnosis with gestational diabetes.  I knew how to use the machine, but for weeks, I waited to see a nutritionist due to the holiday.  I had spikes and I took guesses how to treat them.  After loosing 5 pregnancies, I was upset at times the way my concerns were address.  I am really considering quitting the nutrition study.  It is getting to be too much.  As much I am grateful for this pregnancy….  I had plans for the summer.  There are things I enjoy with my daughter such as going out for ice cream/yogurt, making breakfast every Sunday morning and baking cupcakes.  I see now the world is not designed for the diabetics.

People on Tuesday made comments to me.  First, they have no idea how I have fought infertility, rare disease, breast cancer and pregnancy loss for years.  Telling me that I made bad uneducated food choices is one thing.  When  someone joking about it that I was trying to throw my baby out in a way, it was not funny.  There was a huge lack of flexibility at times dealing with me.   All you have followed me know, we had to save and plan for the embryo donation on the West Coast.  This little one represents years of struggles.  I was so angry and hurt.  I locked myself out at the mall and forgot where I parked.  I cried a lot on Tuesday.  Tuesday, I woke up at 3AM due to being over heated because I wore my jacket to bed.  My daughter had a growing pain.  I struggled to sleep, because I was hungry.  My first test in morning is fasting.  At 4 something, I just took the test.  It wasn’t a true test.  The number was high for a fasting test, but I got to eat.  I peeled my eyes open and went to work.  Last night, I feel asleep right after diner.  No one is trying to “throw this baby out.”  I am going forward now.  I am not tolerating being spoken to like that anymore.  Last night, I should have taken Hope back to the walk-in clinic.  I hate the glucose spikes.  If I did, we would have had to eat out, I just brought her new meds.  We got to eat home.  The heavy cold rain, knocked the pollen off.  Her headache is gone.  The cough remains.

The Fifth Anniversary of Cancer Surivivorship: Did Not Go Well: Rechanneling The Engery

My meditation teacher gave me good advice since I was getting so upset that about my breast cancer anniversary not being recognized.  My birth family is great at making me feel small.  So instead of being mad, I made my own plans to celebrate in a nice family restaurant.  Last Wednesday, I started to get a cold.  Thursday, I received a phone call from the OB GYN telling me I had gestational diabetes.  I am trying to learn to use the electronic glucose machine.  I got a number on the first try.  I had no guidelines at all.  By Friday, the cold intensified even more.  I was diagnosis with adult asthma after breast cancer treatment.  I hadn’t needed the rescue inhaler for close to a year and a half.  I was trying to make it, but finally the asthma attack was too great.

I felt like I was drowning all last Friday.   I left the test stripes home to run the glucose machine.  The OB GYN office finally called.  I finally understood how often to test and what to look for.  Honestly, I would have called out sick, but I have no benefits with either job.  It felt like I was holding my breath to speak.  Finally, I get to go out to eat with my family.  I am already not feeling well.  Neither my husband or child was particular empathic that night.  We began to argue.  All I wanted was to have diner with my family.  It was feeling  just like the way it  I was treated when I went through cancer treatment.  I ended up crying in the bathroom.  We went home and I couldn’t get the glucose meter work for 13 test stripes.  It was one error message after another.  Finally, I got the thing to work.  Saturday, I was home because the office closes on holidays.  I decided on self care and send them both on errands.

The next day, I get slightly high sugar readings.  I page the doctor.  I was told to just continue to monitor the levels.   That night, I thought I heard teens on the street playing with fireworks.  I couldn’t sleep afterwards.  The weekend is starting to get better and the cold is getting better.  Monday afternoon, I hear my husband talking to who I thought was a higher up with in the police department.  So, I go to the door and ask about the noise last night.  I was told they put someone into custody for fooling around with a gun.  So, I started asking a lot of questions.  When the door closed, I learned it was the mayor of our city who came to the door.  I was embarrassed.  The house is a mess because we are cleaning things in the basement.  I just gave the third degree to the mayor of our city.

My living daughter could not sleep since learning what happened on the street.  I could not sleep either.  She had this headache all week that wouldn’t go away.  It ends up the shootings over Memorial Day Weekend wasn’t the only disaster for our city.  There was a boil water order before drinking it due to a water main break, it has since been lifted.  I decided to go out and get a haircut. I took my daughter to the doctor’s Thursday.  It’s her allergies. The headaches continue so I need take her to the doctor’s again.  As a bereaved mother my child being sick is a high stressor for me.  Over the years, I have a way of secretly being anxious.  We are going to talk to the dentist today to make sure it is not the new retainer.

Every day, we take for granted clean drinking water, when so many people in world don’t have any.  My family drinks only Spring water anyways.  We didn’t want to do the dishes if there was a question about bacteria in the water.  Every time, I went out to eat.  I got slightly high glucose readings.  I do not eat like other people to start with. I asked to be apart of this nutritional study as a volunteer.   Today, I saw people eating large subs for lunch.  I don’t eat like that.  It gets to me, I try and try hard.  I am the one with the cholesterol problem and now gestational diabetes because one blood  level  was too high by 5 points.  Most of this blog was written last Friday night.  I stopped typing around here and my glucose level was very high 260.  I paged the doctor.  I was panicking due to worrying about the baby.  I must have dropped my wallet and my pill case, while looking for my cell phone.  When the doctor called he was not the nicest person, so I gave it back.

Saturday was a mess, I discovered my wallet missing driving to work.   I had to turn around and go home.  I got information about a personal wellness seminar over this weekend.  I decided this was my gift to myself.   So, I have decided that could help me in my guidance in my spiritual journey.  So I decided to sign up for it.  Later, I realized my pill case with my thyroid pills and baby aspirin was missing.  This frightens me because one of the late miscarriage had blood clots.  My husband had to drive my pills  to me.  So, I missed a bunch of work.  I had to stay to get stuff done, because Tuesday, I am with the OB GYN all day with appointments to address this gestational diabetes.   I missed the first conference I sign up for.  I did sign up for a parenting conference, but I was so upset about missing the meditation conference.  I decided to go to something else on energy and healing.  This woman talks about being and working with cancer patients.   I spoke with her.  She is Stage 4 cancer patient with a teen age son.  I was talking about my infertility.  She told me her son was embryo donation.  It was like the entire day and all the frustrations made sense.  Because I was late, I met this woman.  Both of our children, my baby I am carrying was conceived through embryo donation.

My energy is stuck in the anger for the death of my last daughter, the treatment of having breast cancer and the death of my mother.  I keep asking myself why this energy is blocked.  I felt like I needed to keep marching on no matter what.  Lately, I am working on not holding in my sense of isolation but expressing it.  This baby is coming. I don’t want my daughter taken care of.  Because of the environment, I grew up in, I am very cautious to see no one is forgotten.  I am going to be honest with you.  I lash out sometimes.  I think the meaning of the anger is for me to tell people my truth. I need to be careful because when the gates open, they open.