Category Archives: #selfesteem

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.

Semitemental Value

Last night, my heart was cut into a million pieces.  I have come from a tough background.  Last night threw me over the edge.  My birth/marriage family has basically been emotional cold.  Since Joy’s birth, I have been trying to get to a state of acceptance, move on and rebuild.

The surgery went okay on Friday.  I don’t have too much information because the doctor came and I was out.  My husband was called so all I know is Polyps were found and removed.   I don’t know how many etc..  We had to leave at 5AM.  The girls fell asleep.  I woke up with a head cold.  So, I just went anyways.  I asked him to stay with me in case the hospital decided not to do the surgery.  I got a bunch of snappy answers.  My head clicked and I said forget this now.  Our former marriage therapist told me he may be some underlining issues that I need to understand.    I have not shared that back.  I am trying to accept and adjust.  He apologized and all.  I just brushed off.  Let the show go on, I will take care of myself!

I get to the waiting room.  It’s packed with people and their family.  I tried to bottle up my feelings of sadness.  When I had breast cancer, those feelings of isolation resurface.  My in-laws have my name, email address and number.  My well wishes went to his cell phone not mine this time.  Which brings me back to another matter.  I find in this electronic age, my own sister will dictate messages through my aunt.  I address this again.  Auntie, the woman is almost 50 years old, let her call me directly.  A few weeks ago, I called her directly because they was a shooting at a popular teen spot.  In the middle of the frenzy, we didn’t know if anyone was shot or killed.  I called to check on my nieces and nephew.  No one was killed thankfully during the incident just shots.

Maybe it was the combination of my first daughter’s birthday/death anniversary, the fact it was called a “D&C” and the fight I had, I cried hard in the waiting room.  I resented the procedure being called a D&C.  I had been through a combination of 3 D&E/D&C.   Emotions were raw.  I was in and out to the bathroom trying so hard to bottle it up.  It didn’t happen.  I squeezed out one last call to my daughter’s cell phone.  I learned the girls went home and fell asleep.  They pregnancy tested me.  I felt myself even through we are officially done daydreaming about conception.  Oh well, it didn’t happen.

Friday, no pain.  A string of messages perked me up.  It was odd to be home and child free.  Even the cold behaved, maybe I wasn’t really sick.  Saturday, the day was a mess.  My husband needs to manage Joy, our toddler.  I can’t pick her up right now.  Joy extends her arms.  I don’t know how much she does understand.  So, I tried to explain.  I sit down.  Joy go get a book. I will snuggle you and love you that way.  Joy is a persistent little person.  No, I want my mommy.

Saturday, raw anger was boiling.  I wanted to finish that movie about the angels of our rare disease for Rare Disease Day.  Hope practiced Twinkle Twinkle Little Star for weeks on her flute.  Her bedroom is a mess, because we are trying to paint it.  He is sick.  I am sick. Hope is not feeling well.  We went back and fourth trying to finish this movie.  I posted a rough draft up.  I was thanked by the one mother who submitted anything.  Hope made slime and covered the kitchen.  The cramps came and I found myself in a squat position with preteen upset with her failed slime project.  Thankfully, my purse is well stock.  I went to the basement room because I was ready to tear her apart.

Then, came this critique  about the movie from a friend about the music and text.  I was having serious cramps and my nose is burning.  So, I practice a type of coping skill, which is like putting the ball back in her court politely.  Okay, you have these ideas, so help me fix it.  I watched the wording.  Of course the answer was “I can’t do these things.”  She texted me with an apology.  For a month now, I have been trying to pull this off with little invested interest from the group.  Again, I watched how I said this, but this one hurt.  I have been there for years.  I sent her messages when she was pregnant with her baby who didn’t make it and during her subsequent pregnancy, which was a healthy girl.  I was heated.  I sent a message explaining these things.  I accepted her apology.  You know she was one of those messages after the surgery.  So, we are good today.  She is still my friend.  All fixed.  It was a very thin line because I wanted to loose my cool.  The answer is we are all living beings.  To use old 12 step wisdom, I was a proud member of Ala-Anon for many years.  I am grew up into a substance abuse counselor.  “It’s about progress, not perfection.” The more I live. The more I understand, you need to be flexible in life.  Perfection is something for TV show.   In the real world those perfect plans are not always realistic.

Next year, just one movie for Avery and Addison.  (Period the end.)  I am done with my co-dependent slip.  I am feeling better today.  I hope we finish painting Hope’s room.  Funny enough, she wanted this different color.  I braced for it, because the room was originally painted for Avery’s nursery.  It ended up, it’s the same color.  It was a string of communication errors.  One could say it was like the angel Avery just said no to Hope’s color choice.  My husband has hearing loss.  I am still trying to adjust.  He swears I told him to buy the paint last week.  What I really said was for Hope to think about it.  He just saw something circle and brought it.  Hope is saying it’s okay.  It may be a few years before the house is sold. Let’s end it with, it’s about progress not perfection!

 

 

What I Have Done:

The holidays were crazy days.  My agenda was so full.  I am still doing stuff I said I would do over vacation.  My mammogram was normal. (Thank God!) It was a crazy day.  I went from the craziness of the holidays to working the night before my mammogram.  I woke to a bad morning.  I love my glasses, but the frame is so light colored. I can’t seem to find them a lot or I drop them.   I get out of the shower to discover my glasses missing.  I half stepped on them, which bent the frame.  Oh wonderful from holidays to back to work to mammogram morning.

The day couldn’t get much worst, when at the hospital, I discovered my wallet missing.  I was I.D.less.  Panic stricken, I kept going to every parking garage except the one, my husband parked at.  I learned I had an appointment at 10AM for the breast surgeon.  I am 150% anxiety now.  What else could go wrong?  Two people joking with a Firefighter that a drill was planned for today.  Not before my mammogram.

(Oddly enough, when I was having radiation treatment at a different hospital about 7 years.  During one treatment, the fire alarm for the hospital sounded.  I was told to hold still because it wasn’t our area that needed to be evacuated.  Someone made the joke that someone had brunt toast on the maternity ward.  I held myself together.  I went out to the car and I sobbed horribly.  I should be the one burning the toast in the maternity ward.  My baby Addison had just born still about a year before.  Here I was fighting breast cancer instead.  When Joy, my daughter was born 4 years later.  I kept refusing to let any member of my family use the toaster on the maternity ward. )

I have the hardest time with mammogram day.  Somehow, my anxiety is always out of control.  The hospital worked with me.  I had to call the school and tell them I was late.  My oldest was sent to aftercare.  My anxiety was Hope remembers when mom had breast cancer.  Her ABC’s in kindergarten was different from other kids.  A is for my Angel baby sister Addison and my Angel Nana.  Both had just died.  B was for Breast Cancer, my mom is fighting.  C is for Chemo, my mother has no hair.   Hope knew it was mammogram day.  I was scared that she would get frightened about a bad test result.  Here I am anxiety high plus trying to explain this to the school.  This made my anxiety higher.  The delays were caused by me.  Everything worked out in the end.  I finally found the right garage and my wallet was on the floor of the car.

The relator got the stomach bug and canceled during vacation.  So we rescheduled for mammogram day. I worked the night before the mammogram and I thought I would have time to clean it up quick before she came.  My husband dropped me off at the house.  I quickly walked to dog and I cleaned the stove.  I decided not to cancel.  The entire month either she canceled or we did.  It is what it is!  So, the quote was lower than expected.  After all the cleaning and reorganizing last year, I heard reorganize and repaint all the rooms.  We are waiting for our taxes to see how we are going to proceed.  The chimney needs repair.  Bricks are close to coming out.  We need a new cellar door.  The kitchen needs new counter tops and the bathroom needs a new tub enclosure.  I was schedule to work that night.  Just last year, I stayed up all night to clean up the mold.  I would sleep for a few hours, then Hope needed to go to school.  I would stay up all day and care for Joy.  Those were my three days a week off.  There was no complaining or back up.  That was my life from April to June.  We had a serious health issue brewing in the house.  I did it for my kids and pets.  I have kept my promise to myself.  NEVER AGAIN!  I still can’t seem to sleep all night.

I kept my promise to myself to not let myself be worn out.  I cut down my hours at part time job number 2.  I rescheduled myself from one weekend day to Mondays and Tuesdays evenings.  If I am going to be working so is everyone else!   So, last weekend in the middle of a major snow storm, we started phase 3 of remodeling the house.  It’s not clear if it will sell or not.  We are not sure if we can afford the mortgage in the town next door.  There is a huge price gap between our crime ridden city, which is on the top 100 violent cities in America and that town next door, which is 3rd in the state for one the best towns to live in.  Honestly, I don’t know if I belong there.  I can’t seem to connect to others.  Hope says people ignore her at the school.  I am not sure if we will end up there.  Hope wants to graduate there.  She can live anywhere in the state and continue to attend the school through the program of School Choice.  The only agreement is we need to be willing to drive her.

I have also been on other social media accounts exploring other parts of my life.  Sometimes spending too much time on it.   I don’t want to discuss it.  My decision has been made.  Life is not “perfect.” I don’t live in daily active cancer treatment.  No one died in this family from a rare disease today.  This is about still picking up the pieces and determining what is best for the family.  The house is way better than the day Joy came home from the hospital.  I am hoping for us to move this year.  Hopefully to a new joyful place for our family to live.

 

When Your Christmas Train Only Works In Reverse!

Last weekend was a bit of emotional roller coaster.  My oldest had her Christmas performance and she was marching in the parade.  I had to work odd hours again to get the weekend off for her activities.  My daughter has belonged to an organization that I did as a child and my mother as well.  She has just gone further than us.  There were some issues with the other girls, who choose not to talk to her.  I was behind in Christmas decorations etc…  My daughter Hope doesn’t like much sports.  They decided to have a Christmas party at an ice skating rink.  I even volunteered to help this organization.  The other girls would not talk to her.  Here I am freaking out about Christmas decorations.  Hope told me, “I don’t want to go there anymore.”

My first response was a screaming match with her.  You know when you are wrong.  I texted the leader.  She doesn’t want to belong with the organization anymore.  Hopeful, Hope would be happy with this message, but she cried for a while.  I remind her with that organization you can just have a membership and earn awards at home.  You do not need to belong to the local units.  She dried her eyes.  She is just not athletic.  I wasn’t either.  The girls are very heavy into sports.  Problem resolved right?

Welcome to Puberty 101.  Mom, that was too easy.  So she starts with, “I don’t like Sunday School.” At this point, I am thinking life is easy dealing with a toddler instead.  Forget this puberty stuff.  Where’s my magic wand? Hope become a toddler again. We are massively late for church.  The director is running an activity.  I let the director know Hope was having a bit of a morning.  I drop Joy off at the nursery at church and there is a lot of little ones.  It hits during church that Hope belongs to a community volunteer club at the school.  She has barely done any volunteer work.  So, I decide to talk to the director and Hope.  Guess who will be helping in the nursery.

I start blaming myself.  It was when Hope was so young, I decided to disconnect from the world.  I hid the miscarriages and infertility treatment.  I rarely talk with anyone in the face to face world about what it is like for this family to find out you are the first documented ones carrying a rare disease that causes your children to die shortly after birth.  I am not going to say we are all fixed.  I wouldn’t quite say we are still at complete devastation.  We are healing.  I am struggling to find a path honoring my bereavement and still feel connection with society.  I decided after Joy was born that I need people.  Some are not coming back.  I have noticed telling people that I am sorry for being distant in my quest for another child does work for some.  I was so overwhelmed that I never intended to teach Hope to disconnect.

This brings me to the title of the blog. I spent numerous hours trying to make one of the two train sets work.  One only won’t derail in reverse.  The story of my life…  Well, we are going somewhere in reverse.  The house was a real shack when Joy was born.  I lived and breathed to be pregnant.  It’s not completed.  Does a house ever get completed?  The contactor has to come back for shutters and the awning.  I am trying to keep up.  The relator was suppose to come this week.  Unfortunately the stomach bug struck us.  Hope needed to go to the doctor, because it was 16 hours later and I was concerned about dehydration with her.  She was out of school a few days.  One was my day off.  My husband worked from home.  He threw up too.  I crossed my fingers and put myself and my toddler daughter on probiotics.  So far so good… Either of us have been sick.

I was sitting in reflection of the sadness, isolation and despair we have felt.  I think of it like this.  I can never undo the wrong that was done to me.  I have a choice.  I can choose to be the healing lite for others.  I can choose to treat others with the compassion that I deserved in my pain.  Hopefully, we can continue to heal and become who are intended to be.  I am the light for rare disease and breast cancer.  I can become the complete opposite of what those who do not care for me say…  That is my path.  Honor the memory of the babies I carried.  Honor my battles.  Raise our daughters into beautiful young women with wisdom.    Hopeful if there is a heaven, our angels will smile on our lives and decisions.

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.

 

 

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.

National FertIlity Awareness Week

I was twenty-eight years old, when we decided in the following year to have a baby.  I love the Greek Myth of Pandora’s Box.   It’s such a symbol of us as a family starting our journey.   I spent one year before trying to put things in order.  I was in the process of becoming a license professional.  I went to all the doctors.  I started my prenatal vitamins months in advance.   I wanted everything perfect for our child.  We decided to start trying the summer of 2003.  Two cycles later, I was pregnant.

When we got married, we decided to have a small wedding and to buy a house.  I was in my last year of grad school.  There was no time and money for an official honey moon.  We did a day up in New Hampshire and I returned home to go back to school.  We decided after learning that we were pregnant to go to London four years later for that honey moon.

A few weeks before Thanksgiving and a day before vacation in London the ultra sound showed multiple birth defects effecting each body system and organ on the baby.   In my current pregnancy, his is the reason, I don’t push what gender this baby is.  We were so happy during this ultra sound with my first daughter before the news.  We literally kept asking the tech is it a boy or a girl because we were so incident.  The tech would not say.  When the doctor told us that the baby had multiple birth defects and would most likely die in utero.  The baby had spina bifida due to the symptomology of Campomelic Dysplasia.  I personalized this.  It was my fault even through I took prenatal vitamins 6 months before trying.  Our plane tickets were waiting.  I looked at my husband, because there was no way to get the money back.  I told him, if the baby was going to die, let’s go show the baby the world off to London we went.   I spent the entire trip refusing to have my picture taken.  This was our birth as parents of rare disease.  I found myself praying to God that the doctor’s were wrong.  I said a prayer every square inch of Westminster Abbey.  Even through we are not apart of the religion, I brought a cross for the baby.  When Avery, our first daughter  was born and rushed to the NICU, it was with her.   After her death, I found myself yelling at God that she didn’t have to be perfect, I would have loved and cared for her.

Last night, here we are at a furniture store looking at pictures.  They have these big huge pictures of London.  I am twenty weeks pregnant after 5 pregnancy losses from a day after birth to a miscarriage at 6 weeks.  I am forty-one years old.  I told my husband looking at a picture of London, “we need to go back someday the first trip sucked.” All of us kind of giggled.

So much of my life was around resolving a medical mystery.  First, we had recurrent pregnancy loss.  Then male infertility.  Life was about medical tests.  Maybe it was this and that.  Over time, I had to accept medication as a science and I had to understand it was a process of elimination.  The unbelievable happened when I was in breast cancer treatment.  The doctors prepared us for no answers.  I whispered to my husband, maybe when we die God will tell us why.  When ended up being the first documented case of a dominate carrier.  We had an answer, which meant we had a chance.  Breast cancer treatment was top priority.  It gave me hope.  We didn’t save eggs prior to treatment.  (Fertility preservation is not covered even for cancer patients.)  I stayed hopefully all we needed was one egg.  I was able to return to fertility treatment the IUI’s failed and IVF was failing.  We were told about donor egg.  I cried for days.  Research everything.  It looked like it was over.  Actually, we had been on the topic of donor conception for years prior to this.  Neither of us could genetically parent again.  Egg quality was not working with donor sperm due to cancer treatment and age.  It was after the last cycle failed, I picked up the phone and called the fertility place on the West Coast.  Our family had a scheduled vacation to Washington DC last year.  We drove home.  Once I knew they were home safely.  I boarded a plane for the West Coast to complete a medical examination.  I am not sure when I “officially” graduate for recurrent pregnancy loss.  Let’s have the biggest party, when this little one is two days old.  My mind haunts me even knowing the reason for our losses.  I get anxious, when I don’t feel movement.  This week was hard for me.  I appeared to have strep, but my quick test was negative.  Next week, I am twenty-one weeks pregnant, which is when our last daughter died. Our daughter Hope and my husband wanted to go back to Washington DC.  Last year was fun, but there were some problems.  So, we are taking a train.  I am hoping to get some work around the house done. The nursery still stands waiting for the baby.  We need to rearrange to  the house.  I want to bring home a rainbow again.  I hope that I do.  My eyes are open to the effects of rare disease and infertility.

The Pregnancy Announcement Wake Up Call: I Needed That

Friday night, I had a wonderful time.  It came to my attention how negative I feel about pregnancy.  As a teen, my mother was always fearing that I would get pregnant like my cousins and quit school.  When I was pregnant with my first daughter and married, I began to feel guilty because I felt like I failed her and got pregnant.  Some of my family members held me personally responsible, when our first daughter died.  When I was pregnant with my daughter Hope, my sister said to me, “now I don’t want to hear you crying if you miscarry.  After all, we don’t want genetically inferior babies in the world.”  For months I would not speak to my sister, who was also pregnant at the time.  Years later, her daughter has multiple learning disabilities both of them.  I am not happy about this at all.  As a child, we taught not to jinx ourselves.  I had a lot of learning disabilities myself growing up.  A few relatives confused my learning disabilities with mental retardation.  In difference to these challenges, I went to college and grad school.  I work with children, people in recovery and I love what I do.  In their moment of harsh judgments about me, they inspired me to a new level.

Friday night, I saw a problem area.  I am due in September.   Goals and dreams for the summer were mentioned.  All of sudden, I don’t know how tell people, I am pregnant.  All these mix feelings about pregnancy came out in the following message, “I am due in September.”  It was unclear.  What’s due in September?  I think what message I got the most out of is, we are adults now.  I do know how to get my needs met.

I have been so angry about the way I was treated by my family during the cancer.  They are who they are.  I started one of my social media accounts on this thought.  No matter how much I want a cactus to become a cute fluffy teddy bear, it won’t.  So, if I keep hugging a cactus and complaining because I am getting pricked than I am the one who needs her head exam.

Let’s apply this to the birth announcement next Saturday.  It was eight years of losses.  There were 5 different pregnancy losses.  There were so many failed IUI’s, I loose count.  There were 5 failed IVF cycles with my own eggs.  One failed embryo donation cycle.  I worked so hard.   I will be damned if anyone is going to turn my pregnancy into a cheap talk show.   I have grown a lot since my daughter’s Hope’s birth.  People were treating me disrespectfully and openly since the maternity ward when my living daughter was born.  My gut told me to stand up for yourself and the baby.  Come on Ellen, stand up!  Because I wanted the love and approval of everyone, I didn’t.  My soul was crying and begging for me to do something.  When my daughter was 6 months old, I stood up for us.  Now, it is 10 years later, I am 10 years wiser.  I know right from wrong.  I am not going to care what anyone says.  I am standing up for my children and myself.  My first daughter’s death had nothing to do with any of them.  In their sick twisted minds, it was about them and their agendas.  If there are a lot of problems with relatives on a particular account after the baby announcement, than I am closing the account.  These are people with a serious drama addiction, who can’t see it.  I was saved as a teen ager thanks to Alateen.  I deserve the happy maternity ward experience.  Years of hard work went into this.

Those are my thoughts after the seminar on Friday night.  I think new people are going to come into my life.  I am just waiting for them to come.  I did see something last night that reminded me of my life before my first daughter died.  I was the “life of the party.”  After her death, I changed.  Hiding my truth is wrong because I am the only one injured.  Taking a deep breath, I am not scared to tell my bosses.  I was frightened on how other people will react.  Today, I am ready to kick them all out.  I am opening door of my life to who wants to come back or meet me for the first time.  I am done begging for someone’s affections.  Next Saturday is my birthday, I will celebrate it in a way that seems right to me.   I took the day off.  The day afterwards, I will work at the hospital, which is always fun.