Category Archives: Recurrentpregnancyloss

These Past Few Months…

Writing allows my sanity to flow.  My toddler daughter reminds me how much zest for life we have as small children.  I see pictures of me  at twenty-five year old in a wedding grown.  I believed.  My innocence was taken away, when I learned the baby I was carrying was to die from an awful disease.  My first born had a bell shaped rib cage that refused to let her lungs expand.  I watched her die.  Then, it was the words of others that confused me.  I didn’t care about the social issues.  It was what I felt I needed to do for her and our family.  Then, when a miracle occurred and second one was born, the rug was torn from under the feet of my soul.  I chose bad caregivers with their own agenda to care for her without knowing.  For months, I cried at the level of betrayal.  I learned from that day forward to trust my own gut instinct.  The innocence of a picture of me at twenty-five year old in wedding gown was torn.

When I wanted another baby, I held the silence of the losses.  One miscarriage at six weeks, 18 weeks, 13 weeks and 21 weeks.  I silenced my voice.  Then the breast cancer came and my mother died.  Quiet Ellen!  Can’t you be grateful for the one you have?  I swallowed my pain and disconnected from the world.  I am doing this!  It took 8 years.  Proof, I flew out to the West Coast a few times instant miracle. Joy, my youngest,  was born.  Please don’t take me ungrateful.

The house was covered in black mold, a newborn’s parent worst nightmare. I have gone crazy scrubbing walls at night and getting a few hours to take care of Joy.  This war with the MOLD is always going on.  Somedays, I find it ironic like the negativity in my mind.  Somehow, I got disconnected from the one person I should have been connected with.  He kept drinking.  When I looked into her eyes, I heard my mother say, “do the best you can with what you have.” The mold has mostly fell into silence except when I notice it got a another piece of Joy’s clothing.  The war continues.  Finally, I brought the most expensive dehumidifier ever after a long battle about buying it.  My oldest has migraines now.   It seems puberty related. This morning, I notice, yep another cute shirt gone due to mold. Writing saves my life.

I am trying to reconnect with others. I don’t know if everyone will ever come back who were lost in my quest to have another baby.

As for the mold, I started reaching out to a family friend for help in the construction business.  That exclusive all expensive dehumidifier wouldn’t run continuously for the dumbest reason ever.  The company coils the drain hose.  I order another one.  Same thing again.  The family friend picks up because the company has coiled the drain hose, it’s causing kinks.  He drills a hole in the wood board holding the dehumidifier and puts a cooper tube in to hold the hose straight.  It WORKS!  Meanwhile, I struggling to find the time to load the old one in my car to return it.

I found myself struggling with the schedule of two jobs.  I have to pick up the kids by 3PM.  My daughter was picked to go to school in another town.  Middle school has no afterschool.  There is no public transportation.  I have to stop working and get the kids.  Then, I wait home until 6PM.  I am out to another job.  I noticed my toddler seems extremely impulsive.  She doesn’t like to be alone.  She hates shoes and gloves.  She bolts.  She has almost ran into the street several times.  She won’t eat bread.  It takes a half an hour to dress her in the morning, because she fights with you so much.  I do love her very much.  I very concerned about her behavior.  She is hitting every child at daycare.  Right before Christmas, she ran from the daycare teacher at the library and almost ran into the parking lot.

I started blaming myself because I haven’t had the same amount of time for her as the first.  When I last specialized in children, I learned about sensory disorders.   I don’t know much about them.   I am so concerned about her running into her death because she was hit by a car.  Her behavior is beyond the average toddler.  I made a decision to have Early Intervention look at her because she is like a space ship on continuous warp speed.  I am not worried about autism because that kid loves people.

In the past few months, I have been sleeping right.  I can’t seem to sleep after working at night.  One job is constantly under staff.  I have left at midnight due to it a few times.  Then, I struggle to get up to fight with the toddler to get dress.  My oldest is having anxiety about being late for school.  I have missed many showers.  I tried everything with my schedule.  When I was asked to take on an additional placement at my main job, I agreed as long as I can work additional hours on Sunday.   How does a toddler almost get out to the parking lot of a library? I started looking at other daycares.  All the childcare providers that my oldest had are retiring.  I feel like I am starting over.  Somedays, I very overwhelmed by child care for Joy.  She is in a family daycare that runs on the school schedule.  I started having chest pains last October.  I can’t get to the doctors because I have to wait for my husband to come home.  When Joy comes, I constantly correcting her.  It’s suicide watch 24/7.  My husband actually brunt his vacation days up so I get my trainings done for my license renewal.  I never wait until last second.  Two jobs and a mold war is all I am going to say.  I love her so much.  At 10AM on my days off, it feels like midnight.

I went for a stress test.  I warned the person that I wasn’t going to make my 3PM pick up time a week in advanced.  I am telling her I need a stress test.  So the morning of, she says see you at 3PM.  I told her again.  The daycare closes at 3:30, but she makes us tell her an exact pick up time.  I had to wait two weeks due to trainings, her jury duty and early release days for my oldest.  The test was at 2:15PM.  It was 2:35.  I said something.  The woman looks at me and says, “let’s reschedule it.”  It’s an act of congress for everything.  I am lucky to shower in the morning.  I said look I want to know the results.  They did the condense version.  I had an asthma attack.  You would think all that running after Joy would count as working out.  I bolted from the appointment.  I ran down to the daycare.  Her dog escapes and I am trying so hard to help. (The dog was saved.)   She bolts in the car with one of her kids and leaves.  She talking about Christmas shopping.  I ran out of time.  Christmas Eve, I discovered I ran out of wrapping paper.

I had to do extra hours at both jobs to cover Christmas, New Year’s and two days off. I travel for a living.  It’s a real struggle to make sure I am there at 3 every day.  I have no vacation time because I am part time.  I have to train weekly for a month to submit the paperwork to get my professional license.  We have 2 years to get the trainings done.  I had to cancel or not go due to all the problems at home.  (Side story, one training I was doing on my own lost accreditation.  I had to scramble to find new ones fast.) It was done.  It’s not my style.

Anyways, the stress test was normal because I was never contacted about problems.  I got a letter in the mail my cholesterol is normal first time in 7 years.  It could mean, I am experiencing scar tissue pain from the breast cancer treatment or anxiety attacks.  This is my thoughts on it.

When I looked at that baby day one, I realized how much resentment I was carrying due to the lack of help from other family members with my oldest.  Constantly resenting it does NOTHING!  I promised myself and her that I wasn’t waiting for a caped figure to rescue me.  I am putting that cape on myself.  I am Ellen hear me roar!

I brought the woman at daycare a gift.  She was obvious that she was upset there was no holiday bonus. Of course she is closed Christmas break.  We saved a lot of money switching daycare to her place.  So, I had it.  I found something that takes the pressure off me a lot.  I found a drop in daycare center!  You buy hours and schedule days. I also toured another daycare.  Joy was not prompted.  She sat down in every class and participated.  I am pretty sure she has an impulse problem.  She is blowing out of her dance class.  Her behavior is like the Tasmanian Devil.  Listen, my gut says something is wrong.  I am going to do the right thing here.  Maybe Early Intervention will tell me that I am crazy.  If she needs help, let’s start now before she flunks kindergarten.  If she needs nothing, I have peace of mind.  I am not allowed to practice my profession on my own kids.  I see some concerns.  I don’t think sitting around and wait another year will help.

I feared her return to daycare.  It was an explosion on my part.  I don’t do well with repressed anger.   The night before for eight hours to make money from taking days off.  I worked in a 50 degrees office with work for 3 people.  I apologized.  The women at daycare disagrees with me.  She thinks it’s all behavioral.  You know what there is nothing wrong with asking for help.  I lost two babies due to rare disease.  I flew in my first pregnancy to Maryland to get a second opinion.  Who am I not to ask the question?  We hired the drop in daycare. The pressure is off a little about childcare.  I need to take care of myself.

It really hurt when I went to that IVF clinic chat room and I was put on the spot.  Later, I did talk to the admin person.  It was the other admin person who did that.  I just told her I didn’t think it was the right time for us to interact with them.  I am never going back.  Listen, I fight addiction that is in recovery at home, work two jobs and I try my best.  I am also concerned because Joy’s red blood cells are small.  Her iron levels are normal. It was brought to my attention because the doctor has to worn you about everything that there is a slight possibility she could be the carrier of rare blood disease, which doesn’t effect her health, but may effect her when she goes to have children.  It could just be do to her anemia.  Let’s stop right there.  Our family broke medical history of being the first documented carrier for a different rare disease.  I heard him say slight.  I stopped him and summarized our lives in 5 minutes.  Yes, I can do that in a matter of fact way.  Sadly, it’s our reality.  Some days, I can.  Some days, I can’t.   Joy is my daughter.  I refused to look the rare blood disease.  Of course, my husband says I already did.  Sorry, I am busy looking at daycares right now and getting Early Intervention in.  I am going to keep faith again that isn’t what it seems.  I am crawling with anxiety.  Joy was conceived through embryo donation.  If her cells do not improve, I am feeling a duty to warn BIG TIME.  I did not share this with that group.  Because we don’t know.  Maybe my innocence was destroyed but why panic everyone?  It can’t happen to us…  AGAIN?  If this is the case, I will follow it up and take steps to warn the professionals.   I am not sitting on that.

I also did not feel ready to learn if Joy had genetic donor siblings.  I am not hiding the information from her.  It may someday put my relationship and her sister’s relationship in stress with her.  I don’t tell everyone about donor conception because I feel that is Joy’s choice long term to decide if she wants to disclose the information.  Look what happens just choosing to make decisions that our best for my family.  I have seen the dark side of medical treatment.

As for my oldest and her migraines, I am working hard on diets and regular routines. I am in short the evil mother to a certain preteen.  She had a doctor appointment after the blinding migraine.  She needs to see an eye doctor incase there is damage.  She already had an appointment due to the school mis-documenting she wears glasses and she flunked her eye exam.  We will keep it.

My resolution?  I lived two years sleep deprived.  I miss showers greatly.   I am trying to escape a violent city.  I am trying to take better care of myself.  I need to attend Co-dependents Anonymous more.  It seems to work better than wondering if my therapist knows someone I professional know.  I tried therapy and learned she knew the doctor I worked for.  I never went back.

We have been living a crazy life to fight the mold.  Hopefully, by me not working nights, I can monitor bed times.  Maybe my menstrual cycles will turn normal.  I bleed heavy.  They last for 20 days.  Gee, do you think that impacts my mood?  I gave up coffee.  I tried to quit smoking.  I need to sleep more regularly.  Sleep deprivation is like being drunk from what I am reading.  I don’t know what this year will bring.  Hopefully, we can gut the bathroom be done with the MOLD and the other dark stuff that taunt our lives.

Forget the caped figure!  I am saving myself!  I am putting my own cape on. I need peace with the person in my life.  I do love him.  He had a sore throat and I went crazy looking for a cough drop.  Somehow, I need to accept what is or figure out what to do.  I am not 100% innocent of being a part of the problem.  I need an attitude adjustment too.   of As for my career path, I need to figure a way to make a bigger income.  About $30,000, doesn’t cover daycare.  I can’t be working 6 days straight.  It was a tough decision because neither place was a prime choice.  I chose the one with more money.   For now, I told my very long term job that I will stop working every week regularly.  I am hoping a regular sleep schedule will decrease the stress.  I hope Hope and Joy’s life improves.  My New Year’s Resolution is to keep working on healthy choices for my daughters and I.

 

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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.

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.