Monthly Archives: April 2015

The Symbolism Of A Swing Set In My Life

My mother raised us in an apartment in the suburbs of Boston.  We had no car.  The only swing set I had was the playground.  So, my brother found a swing set and cleaned up for me.  I lost him due to addiction.  My mother wanted us to have profession, careers and a better life.  We do have that.  I wanted to own my own home, when I grew up as a child.  My children were going to have a swing set.  We were raised in such a way.  Sadly, addiction and anger found my sister and brother.  I was unaware until my daughter Hope was born.  So, when I was a teenager, I walked the “I’m going to be someone someday.” In college, I decided to dedicate my life to helping others.  I love what I do, but it is close to being a volunteer.

We brought this house in a city neither of us would have chosen.  The property values are low, which makes the houses affordable.  Meanwhile, I say this with a straight face I won’t tell you about the black helicopters and the crime here.  When my daughter was 2, we brought a small swing set.  When she was in kindergarten just as I was just recovering from cancer treatment, the swing set was recalled and we were sent a replacement part kit.  I don’t talk about the cancer a lot.  The tumor was right under my left nipple.  Two lymph nodes were breast cancer positive.  For treatment purposes, I had 13 lymph nodes remove in total.  I had surgery, chemo and radiation.  The radiation treatment went to the left breast, up under my left arm and around my shoulder/neck.  I did not have the physical strength to install the replacement parts with my husband.  I went from cancer treatment to fertility cycles.  You can not pick up items over 50 pounds, when you are stimulating.  I tried to get friends or family to help.  The result was my father-in-law decided to tell my daughter that the swing set was dangerous and I should buy her a new one.  He had her announce at her birthday party that the swing set was dangerous and not to use it without speaking to me.  My in-laws and I do not get a long at all.  My husband will defend them until the end.

Last year, I had it.  I Craig List for someone to help.  Four years had past and the swing set rotted.  We struggled with what to do.  My friend sold her house and she had this swing set that needed to go.  So, we hired someone to move it and get rid of the old one.  It was expensive, but you are talking about a different type of swing set.  My husband starts straining it and discovers all the supports are rotted.  The person we paid never mentioned this.  After he took our money last fall, his recommendation was to just buy another one.  Here we are back to square one again.  Last night, all the anger came out.  Next month, it will be 5 years I was diagnosis with breast cancer.  My in-laws watched and they had excuses to not be available.  I try so hard to verbally whip lash people but I am sick of it.  This anger just keeps flying out.  All I want to say is where were you…  I struggle with this.  No one seems to see the relationship between my dreams and this swing set.  My heart broke this morning.  My daughter came to me and told me that she didn’t need a swing set.  She told me to just buy one for the baby.  It becomes clearer and clearer.  I married into the same family I grew up in.  It’s just reaffirming my voice does not matter.  There were several areas of my life, I ignored to get through fertility treatment.  My dream is happening.  I don’t need to live like this anymore.  I keep finding the anger of that year.  My daughter died. The cancer happened and my mother died.  Superman where are you?  Please come and help me.  He never showed.  There is two ways to look at this, I am angry but I also learned how strong I could be with little assistance.  Perhaps this is where I fix the brokenness.  Yelling doesn’t help.  They don’t listen to me when I speak, so I could scream louder than a Banshee and not be heard.  It only seems to effect my daughter and I spent the night crying.  As a Alateen graduate, I should know all I have is control of myself.  I think going forward that is where I need to be.

Rainbow Children & Spring Cleaning

So last week, I developed a sore throat, which was mild at first then it became worst.  A few people have developed this really bad cold.  I have had no energy for the gym for days.  I am participating in this nutrition health study in pregnancy.  All I have done is eat and sleep.  Last week, there was so many key elements that needed to be cared for before I went on vacation.  By Saturday, I was convince I got strep from the kids at work.  The quick strep test was negative.  Sunday, it turned into a cold.

I had promised my friend that we would drive 2 hours to New Hampshire to see him.  He was married for 10 years.  They were in fertility treatment, but the wife recently left him for another man.  She took everything, but his clothing.  A friend gave him a place to stay in New Hampshire.  My friend was moved across country as a teen by his mother to live here.  When he was 18 years old, she left in the middle of the night.  There are some relatives around.  His wife is long gone she moved to the South.  My friend is a vet.  He returned from Iraq  in the 90’s with several issues.  She destroyed him.  I learned so much from my friend, who committed suicide last year.  It was a 2 hours drive for pizza, but it is always worth the drive.  In my darkest hour, when the baby died, the breast cancer came and my mother died, several friends helped.   They did say, “Ellen is not our blood.”   If we waited on my family, I would have fallen forever.  My family formed a safety net for this family.  This is the way our life is suppose to be.  Cling on to one another… Life can pull the ground right from under your feet.  It was our pleasure to see him.  He was scared I wasn’t coming due to the sore throat.  We made it.

Vacation has not been “fun.” The first part is needed and functional.  Time to organize and get stuff done.  I am on the “evil” mother list.  No is a good word to teach kids.   We are cleaning in short spurts over a few days.  Children have no tolerance for one day mega cleaning spells.  The train leaves Wednesday morning.

Anyways, when I was helping her this morning, I reflected on one Rainbow thought.  Look at the picture.  This is a framed print, I brought for my daughter when we were in Newport, RI.   I actually mailed one to another mother, who was expecting a baby after loosing her child due to the same rare disease.  We lost track of that family.   It’s an angel standing over a young child.  Below is the picture of our daughter, who died at the NICU Unit.  I brought this cross, shortly after our first daughter died.  The words say,”hope is the belief, more or less strong that joy will come, desire is the wish it may come.” Sydney Smith.  During my first miscarriage at 6 weeks, my daughter was sleeping, it fell off the wall and broke in half.  A few hours later, I discovered the miscarriage.  Today, I discovered the nail was loose again and I banged harder into the wall.  I am a little anxious right now.  I went to get the baby’s new cross for a picture and it was broken.  Today is a state holiday and the Boston Marathon is going.  The new baby is fine, because I ate something and the flutters are going.  A few years ago, when the bomb went off.  It frightened me because I do have relatives and friends who go.  No one was there that year thankfully.  Hopefully all it means is the baby wants a cross from Washington DC.  I am leaving this blog this way…  I am sure we will enjoy vacation, when the train leaves.   There was a bunch of stuff that needed to be done.

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.

I Have No Clue What The Title Should Be!

Saturday night, I went out for another spirituality/relationship class.  If anyone knows the area, you know Cambridge is the city of the “happening” people so to speak.  It a drive for me.    I loved driving through Quincy and Boston.  I was born in the shadows of Boston in Quincy.  The city, we could afford to buy our first house in and pay for the fertility treatments is not as “glamorous”, but I have a home.  Last year, my daughter decided she wants to attend Harvard.  I told her she can commute.  She says to me, “why it’s in the state?”  We have been having a lot of geographic minutes lately.

The previous weekend opened wounds.  Saturday was National Sibling Day.  I am so glad for the family I created today, but sometimes my heart aches for my brother and sister.  Finally, I found myself posting as an adult, “I am blessed to have grown up and adopted so many friends as siblings!”  I don’t know if my real brother and sister will ever come home.  Then, there is the thought of the children that I lost, my babies.

Sunday, I was dressing to show the pregnancy.   I am in that odd place.  Somedays, she looks pregnant.  Somedays, what pregnancy?  Sunday was my daughter’s first dance competition.  Over the years, I held on to believing I was going to have another baby.  People told me to get over it in so many ways.  I was told to give thanks for my living daughter.  How about you be grateful to have survived cancer!  Many friendships have ended because of my “obsession to get pregnant.” Sunday, three of these people were in the room.

As much as I have what want.  Secretly, the fear is still there.  The 13th of April was the anniversary of my son Haven quietly dying at 16 weeks.  We did not know until 18 weeks.  There were no signs of him having the rare disease.  I have been quietly anxious about feeling the baby move.

I have found myself touched by the struggles of others.  A friend from high school was posting about being in NH.  I finally asked what happened.  It ends up he could never have kids and he is a vet of the first Iraq.  He has been hospitalized multiple times for depression.  It ends up his wife left him for his best friend.  Last year, I lost a friend to suicide.  My vacation starts Sunday, so it’s a long drive, we are going up there to take him out to eat.

Vacation is going to be functional.  Lots of things that need to be done.  We are also in the process of hiring another company to buy auto/home insurance from.  After years of business, our last brokers spoke down to me and embarrassed me in an attempt to make a commission.   I am no little woman.  I am in the process of hiring another place to buy our insurance .  Then, we leave by train to Washington DC.  Last year we had to shorten our trip so I could fly out to the West Coast for the embryo donation process.  We decided to visit again.

I have been asked to set a budget for my position for next year.  I am not sure what I am going to do.  I do not make enough money to have two children in childcare.  I am going to give them the best answer, I can.  I have the hospital job too.  I am not sure if I can figure something out by working the two jobs.  As much as I love both jobs, I was hoping to have benefits.  Under the system, I am under right now I make my own hours.  There is no sick time, vacation time or holidays.  Next week is paid by the tax returns.  I have made much progress towards that test that I need to do.  Everything is one step at a time in this pregnancy.  Otherwise, I get so overwhelmed too quick.

Even Irony Itself Found Irony In Yesterday’s Announcement

I went through a major personal crisis about 5 years ago.  I want people to understand my background because it explains my current relationship with my church and my spiritual crisis.   We had another baby died from the same rare disease, which was thought never to happen again after our first daughter died.  Six months later when we started using donor sperm, I was diagnosis with breast cancer.  One vial of blood had been destroyed by accident  about 5 years ago in our quest for answers about why the children keep dying.  We couldn’t see the whole picture of where this rare disease was coming from.  I lost my job.  I was able to get another job back at the hospital.  Then, my diagnosis happened.  At this point, we had been in infertility treatment for recurrent pregnancy loss and male infertility for three years.  I struggled.  Infertility treatment was no longer an option.   I realized, my life was truly in jeopardy.  So, I accepted chemo,  loosing my hair and accepted radiation.  We had consulted with a fertility specialist prior .  We didn’t have the whole picture.  The doctors felt our answer to the reason the babies kept dying may never be found.  Insurance did not cover egg retrieval for fertility preservation.  No one volunteered to be a surrogate.  We couldn’t afford these things anyways.

So, I held out my arm and started chemo.  I knew it would destroy my fertility, but looking back it was my life or dying from cancer.  Hope, my living daughter was 4 years old.  I saw both families withdrawing.  I was not leaving her alone.  I knew they would not care for her.  So, I found myself starting chemo, getting Hope ready for kindergarten and working full time.  I wasn’t quite sure how it all was going to work out, but I needed to live.  Two chemo cycles, full the genetic blood test results came back.  There was a dominant carrier, we were the first one in the world.  Two weeks later, I found one of our cats dying.  I decided to get the cat out of the house, because Hope was 5 years old.  I told my husband, I would go.  The cat was originally my mother’s.  So, I drove the emergency vet clinic.  I was really ill from the switch in chemo.  I called my mother’s number over 65 times according to the phone record.  It was like unlike her to be out visiting the neighbor’s apartment.  I got to the vet emergency clinic.  My wig was at home.  I am in my hat.  (The wig was not comfortable, I only wore it to work.) I was going to talk to my mother, who lived a short distance from the vet clinic about putting the cat asleep.  Sadly, I found her dead from natural causes.  The cat died a day later.

For  months after chemo, I found myself bursting into tears.  My brain began to ponder is there a God or an afterlife.  What God made rare disease, cancer and infertility.  Was I an atheist?  I turned to the two reverends at time.  This was a huge spiritual crisis for me, I found myself doubting everything I am.  There are a few ways people react a few ways to me.  She is the breast cancer survivor!  Did she just talk about the babies, who died again.  Why is she talking about genetic disorders again?  She has a kid get over you can’t have another.  People feared what I stood for.  I turned silent.

Almost five years later, I avoided people.  I learned to make social surface conversations that were not deep.  This was my own crusade.  Yesterday, I stood in front of the church, 18 weeks pregnant with tears of joy in my eyes. Here is where the anger is from five years ago.  I choose at first not to hug these people.  I find it anxiety provoking to make announcements in front of the church.  Then the  guilt got to me for pushing people away.  It hurts when you are in the trenches alone.  Now because you are a victorious hero because the fertility treatment worked.   Everyone wants to be there.  It took time for me to conclude I am agnostic.  Lately, I am reaching out to others on a spiritual path.  Only one reverend remains, who I asked for help from. I was very polite to her yesterday.   I rather choose to walk the other way, when she around.   Yes, I attend that church, but it doesn’t answer my spiritual quest that the crisis caused.  My daughter loves it there.  Two years ago, I could have left and never come back, but I honor she has her own path.  Nine is too young to drive yourself to church two towns over.

There is someone I admire there.  I spoke about before, named Mary.  I love this one aspect of social media.  I see organizations are pushing for Rare Disease.  I see other organizations are pushing for Infertility to be openly discussed.  I see organizations are pushing for miscarriage and infant loss to be openly discussed.  When Mary’s babies died, it was believed mother would be better off not hold or have interactions with the infant.  The dying infants were allowed to die alone.  She got divorced and remarried.  One healthy infant died after it was given penicillin, because the doctor failed to recognize a family history of an allergic reaction.  I know we have a long way to go on these issues.  It is amazing about choices we have for treatment.   I stood there and apologized a bunch of times that she could never have children of own.   Sadly, five years ago, two of Mary’s step daughters died from lung cancer.  Mary is slowly dying of cancer, because of her age treatment is cruel.  It was an ironic moment between the generations.  Someday, maybe there will be a way to use your own egg at 40.

I told them it is a privilege to be pregnant again.  My next candle thanked the doctors in three states  for helping to bring this baby into the world.  My last candle was for families with infertility, rare disease and grieving the death of someone.  Someday, I pray these topics can be discussed.  My eyes are open to the other areas of my life needing to be refreshed and renewed.  I don’t expect people to full fill all my needs.  I just know I need to grow!

Ironically, we went to the restaurant that we went to after Addison died for Thanksgiving.  We celebrated this new life on Easter.  Ten years earlier, I had the privilege of announcing Hope’s pregnancy.    Afterwards, we drove to the cemetery.  We decorated for Spring.  It has been 11 years since my first daughter died a day after birth.  Still today and tomorrow, my babies matter and I will always be their mother.

Tonight, the truth

After having anxiety all week about the level 2 ultra sound, the baby is normal.  I still feel there are parts in my life rebuilding from everything I have been though.  In my younger years, I settled for less.  There are no time for tears now.  I still believe I can have the life I want.  So, I am rebuilding all areas of my life.    Time to bring life to all areas of my life.  I am going out again.  This time no lies.  I am going to a spiritual group. Time to stop leaning on others that do not keep their promises.  I keep asking for people, who didn’t follow through the last 30 times.  Trust me asking them one more time is shame on me not them!   Twice in one day…