Monthly Archives: March 2016

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.