Tag Archives: infertility

Frustrated

Summer was not off to a smooth start.  Joy, my youngest has toddler diarrhea.   My oldest will be going to see more specialists about her liver enzymes off and her vertigo.  We can not afford to move to the town where my daughter goes to school.  I work two jobs.  One made promises to accommodate my needing to get and pick up my oldest from school.  I am not seeing the paperwork going through.

Joy needs to be at a new daycare.  In the 17 months she was at the same one,  she had 5 different lead teachers.  I have witness one toddler push her to the ground repeatedly.  Her last day, the written was on the wall.  My oldest didn’t want to go to an art camp.  So, I hired someone who worked for the school system to babysit both the girls at a flat rate.  This person is worth more than I can afford.  Childcare takes over half my pay to pay.  I work in human services, so I can expect to earn between $30,000 and $40,000 full time.  Remember, I have been doing this 14 years.  I love the field.  I give up dreams of being rich.  I work about 30 hours per week. After fighting cancer, infertility and infant loss, I am spending time with those two girls, who I fought so hard for.

I can go to one job and quit the other. I will loose $200 a pay period.  I am trying so hard to get our family out of the 100 most violent cities in America.  There is a price difference between the city I live and the town Hope goes to school.  If I sell this house, we need a bigger mortgage to get in that town.  Chances are after all this hard work to fix my house, we can only afford a fixer upper.  We have been painting the kitchen.  We are literally tripping over stuff to remodel.  My house needs a few remodeling expenses like a new bathroom to sell it, which we can’t afford.

I am between a rock and a hard place.  There is no public transportation between the town my daughter goes to school in and where we live.  I don’t think she is quite ready to stay home by herself.  I work too far away to take a lunch break late and go pick her up.  If she returned to our city schools, she would be badly bullied.  One job is open to split shifts.  The other job made promises the paperwork didn’t show up.  When I try to talk to them, they just say it’s too far away.  That job requires a two month notice.  I sent them an email saying I need to know now.  I find myself struggling with between finances, work and parenting responsibility.

Yesterday was my daughter’s recital. I decided to reach out to my in-laws.  I finally told them how much I earn for a living and the costs of childcare.  These guys come with a warning sign, “emotionally out of order.” For years, they have caring for free my sister-in-law’s kids, who is a high paying nurse. Her former spouse scammed thousands of dollars from them.  She is their favorite.  My father-in-law pissed me off.  He said to me, “your mother did it and you will too.” Swears flooded my brain but the kids were there.  My mother died a horrible death.  She left me in care of my siblings who were abusive.  So, once again, they are not available.

This weekend has been stressful.  After many years of fighting infertility, I am very aware of my length of cycle.  It didn’t come.  I said is this a joke?  I found myself day dreaming of an accidental pregnancy, which is impossible.  Today, we tried to start a dog walking group.  No one showed.  I have been having so many difficulties with heavy bleeding and long cycles.  Last month, I made it a point to try to sleep at least 7 hours per night.  I also took vitamins. People have been telling me that I sound perimenopausal. I took a pregnancy test.  It was negative.  I flunked in the accidentally pregnancy accident department.  I found myself grieving again. I began to fantasize it was menopause and the nightmare of heavy bleeding was over.    Four days late, guess what came today.

My brain is tired from crunching the numbers.  I am worried about my relationship with others.  There is no afterschool program for Hope, who is going into middle school.  That’s about $50 per week we save.  Today, I paid the deposit for Joy to start a home daycare program that follows the school year.

Money is money.  People can never be replaced.  We have food to eat and a home.  Everyone is healthy that I am aware of.  The mother of Hope and Joy is going to have hope that an answer prevails soon and joy returns to the home.

#NIAW2017 Our story: The Journey of Hope & Joy

I am going to write a letter of thanks to women and men, who are donors.  Before I do, I am going to write a brief summary of our journey.  Fourteen years ago, we decided it was time for a family.  Before being pregnant, I glowed.  The year before we tried, I made sure everything was done.  I visited churches looking for the perfect family church.  I made sure I was healthy.  I brought baby items.  It was time for a baby.  I was so naïve at my precious age of 28.  I thought couples had sex and you just got pregnant.  I completely knew nothing of ovulation and timing.  It was disappointing the first month, we tried.  Nothing.  So, I read online how to get pregnant.  I got ovulation kits and within one month, boom we were pregnant.  At 9 weeks, I had a threatened miscarriage.  I woke up bleeding.  My husband and I headed hysterical to the ER.  The baby was okay.  We made it to the traditional 12 week mark and made the big announcement.  I say this with tears we were so innocent.  At the 18 week ultra sound, we were joking around and laughing.  We were play arguing about if we should learn the baby’s gender.  We were so excited.  The day after the ultra sound, we were heading to London for our honey moon (We couldn’t afford when we got married.  Life was great!

The ultra sound tech didn’t say much.  We were in a good mood.  After the ultra sound, I remarked to my husband, we didn’t get a picture.  The doctor called us in.  I said, “we never got a picture.”

The doctor looked grim. “The baby has multiple birth defects.  I don’t think the baby is going to live long enough to reach birth.” She said.

I can’t remember much after that. I remember screaming “no” like my soul was being shredded into pieces.  I remember falling and the doctor catching me to make sure my head didn’t hit the counter.  We were left through a back door to an immediate appointment in Boston.  I couldn’t stop crying and calling people.  We got the hospital and my husband had to lead me across the parking garage, because I couldn’t find the elevator.  At the hospital, they asked me for my license and for several minutes, I would go into my purse and couldn’t remember what I was looking for.  I begged them at the hospital to tell me that the baby just had Down Syndrome.  I had an amniocentesis test.  I asked them for a picture of the baby.

I came home.  My husband asked if we should cancel the trip.  I looked at him and said, “If the baby is to die before birth, then let’s show the baby the world.” We did go to London during the Bush demonstrations.  I couldn’t talk or breath.  I spent all my money (our cell phones did not work.) on the payphone trying to learn news.  The stress was so high.  We went to the wax museum.  One of the rides took our picture.  In the picture, it was a couple with broken hearts.  I never brought the picture.  I refused to have my picture taken the entire trip.   I went to Westminster Abbey, I kneed before every statue begging for our baby’s life.

Avery was diagnosis with Campomelic Dysplasia. We went through all the trisomy diagnoses.   I was born a rare disease mother.  People voiced their opinions about what we should do.  Our baby was becoming  was becoming a symbol for others about arguments for social issues instead of our baby and our choice.  She was born prematurely.   Avery died a day after birth.  I had never witness a human die.  I felt strong guilt for agreeing to do not resuscitate orders.  I never doubt there was a God.  As I watched Avery struggle for each breathe.  I became obsessed with is there an afterlife? I began to doubt God.  Many friends ended their friendships with us.  I think I hang out with a lot of emotional abusive people.  My own brother screamed at me for crying because, “this was my fault for not listening to the doctors.”

I had flash backs.  I finally left my job because they couldn’t get that I couldn’t be around babies.  I was getting flooded with memories of my baby’s last breath. When I reached out, I was told I was doing this for attention.  So on my last day of work, I did a very brave thing.  Someone brought in a baby.  I asked to hold it.  The memories were flooding me.  I held my composure.  The second, I was out of their sight.  I bite down on my fingers and sobbed wildly.  I kept trying to get pregnant over and over.  One negative pregnancy test after another.  I attended every one of the recommended doctors appointments and I was assured it was a most likely a fluke of nature.  Campomelic Dysplasia was usual thought of to be passed on by a parent with the condition.  Since neither of us had dwarfism or seemed to have dwarfism.  The other way was either my husband  or I had a genetic problem with sperm or eggs.  I was jobless and babyless.  At times, I told my husband that I no longer wanted to work in the field that I loved.  Thanksgiving day, I kneeled before Avery’s grave and begged for help.  I was no longer with the children that worked with and loved.  My Avery died.  My uterus was empty.  So, I kept applying for jobs in and outside my field.  I was going to a fertility center for tests.  Then, on December 1st, 2004, I learned I was pregnant.  My mother-in-law and I wrapped the test as a birthday present for my husband.  I started a new job.  Being pregnant again was not easy.  I played loud happy music to keep my anxiety down.  On August 11th, 2005, our daughter Hope was born.  I didn’t know if she was a boy or girl.  We stopped asking the gender question and gave thanks for a healthy child.

My brother and sister disappeared from my life.  They are very emotional abusive.  My sister was hiding her own pregnancy.  She said to me, when I upon me telling her the news of my pregnancy. “If you miscarry, I don’t want to hear of you crying. Miscarriages are away of getting rid of genetically inferior babies.  We don’t want genetically inferior babies in the world.”

I learned quickly that I couldn’t continue a relationship with my siblings.  It raised my anxiety.  So I let them go.  Weeks before Hope’s birth, they came back.  I was so positive.  Sadly, we hired the wrong medical team for our daughter.  I did not know my brother had physically threaten one of the doctors, when his son  was diagnosis with Asperger’s syndrome.  This doctor was on a revenge quest.  He treated me differently when I was alone.  He was sickly sweet when my husband was around.  It ended up being a blow up.  My brother calling me all hours of the night to call me, “a liar.” I took Hope to a different doctor.  Would you not know they were affiliated with that other practice.  I considered walking away from my husband and child thinking I was the problem.  I could go to doctor appointments alone.  Finally, when Hope was about 2, I had to ask myself who was paying who with the doctors.  Hope is a straight A and beautiful young lady.  She has a new doctor team and there is no problems.  Sadly, my niece around Hope’s age was born to my sister has several developmental delays.

I could write a book.  I was so convinced our losses were over.  When Hope was 11 months old, I decided to have another baby.  My in-laws felt I shouldn’t try because my husband’s sister was trying to start a family.  I got pregnant.  One nap time, Hope’s cross fell and broke in half.  I felt a strong urge to go to the bathroom.  I was bleeding.  I had a natural miscarriage at 6 weeks.  We tried again at New Year’s time.  The baby was developing normal.  At the 18 weeks ultra sound, I was told the baby had no heart beat.  It was my son Haven, who we could never hold.  He had died silently at 16 weeks.

I began to not tell anyone.  We ended back at the fertility specialist for recurrent pregnancy loss.  We had another genetic consult and we were given the same information.  They couldn’t find any problems.  There was a fade theory about MFTHR genes causing blood clots.  I went on Folic Acid and blood thinners.  I had to pay an co-payment of $300 dollars for the blood thinners. We got pregnant again.  It was Christmas time and at 11 weeks, I was told the ultra sound was normal.  A few days before Christmas, there was no heart beat at 13 weeks.  The baby was estimated to have died days after the 11 weeks ultrasound.  I had a D&C two days before Christmas.  We were heart broken.  Everyone was celebrating the holidays, my husband and I were in tears.  The doctor offices were closed.

Shortly after Christmas, I was crying and shoveling the snow off my car.  I heard a kitten crying.  It was 2007.  Lots of people were loosing their homes.  I called out to the kitten, it came to me.  I showed my husband.  We agreed to try to locate the owners later.  My neighbor informed us that the cat was abandoned due to a foreclosure.  We agreed to give the cat a home until an adoptive family could be found.  The cat had a huge abscess on his neck.  New Year’s Eve, I found myself in a vet clinic getting this poor animal help.  I explained we were considering adopting a child and we would care for the cat until a new home could be found.  I spent my New Year’s playing nurse with this cat, who was recovering from surgery.  Strangely enough, the kitten was born around the time, my son, who I lost at 18 weeks, should have been born.  My energy went into finding the cat a home.  A manger at the pet store agreed to adopt the cat.  I was explaining to my 2 years old that the kitten found a home.  She looked at me and said, “my cat!”

I called the manager at the pet store and apologized.  We kept the cat.  He was an all black cat with a white heart on his chest.  My baby’s name was Haven, who died at 18 weeks.  For weeks, we didn’t know if it was a boy or a girl.  I named him Haven because it was a unisex name.  I thought of him safely with his sister.  We named the cat Raven, who by the way absolutely flies through the house to snuggle me.  He is all muscle.  When he jumps on your lap, it’s like when Tigger pounces in Winnie the Pooh.  Trust me, he loves to walk all over you.

For months, I couldn’t get pregnant again.  My husband’s sperm count and quality was low.  We were told we need IVF-ICIS.  (They shoot the sperm into an egg.) The year was 2009, it was tough financial times.  My husband’s bank was sold.  The health insurance covered IVF because it was in a mandatory state for infertility coverage.  However, the pharmacy insurance came from a state without coverage.  It was getting hard to have childcare for Hope for doctor appointments.  I decided to return to work full time, because we needed to pay for the medication out of pocket.  I felt it would be quick and I would have another baby.  So, we finally paid $3000 for the medication through taxes.  Everything look so positive.  I ended up not pregnant.  I didn’t even have enough meds for another cycle.  My husband sperm count returned to normal.  I was crying so hard.  Months of work for no baby.  We began to try again on our own.

On our 10th wedding anniversary, I was very upset and angry.  I learned I was pregnant again.  I was terrified.  All the tests were normal.  At the 18 weeks ultra sound, a resident told me she needed the doctor to sign off on her work.  The doctor returned and told us that the baby had multiple birth defects.  The night mare happened again.  We had after years of genetic tests, conceived another baby with Campomelic Dysplasia named Addison. I rented in this pregnancy a dropper.  One morning, there was no heart beat.  I was induced the week before Thanksgiving.  I lost my job later that year.  Lucky for me, a previous employer hired me.  Avery’s blood in 2004 was flown to Germany to confirm her diagnosis.  The United States had open a lab.

The geneticist recommended we both get tested.  My test was negative.  It was thought that two recessive genes could cause Campomelic Dysplasia.  We decided to start trying in-home inseminations with donor sperm.  At this time, our health insurance was in another state without mandatory coverage.  We tried one cycle.  I began to notice blood on my bra.  I thought a milk duct infection due to Addison’s still birth.

The doctors discovered a lump in my breast.  It became clear that there was a great chance of breast cancer.  The Friday before Memorial Day, I was told I had breast cancer.  No insurance will cover the cost of fertility preservation.  Since it also could have been one of us making our eggs or sperm wrong, which is impossible to test for, I chose to pay for fertility preservation.  My husband’s blood work was lost.  On the day I had my lymph nodes removed for breast cancer, he had his blood drawn.  I started chemo.  The doctors agreed to let me try to use Lupron to save my ovaries.  It put me into medical menopause.  I had chemo and medical menopause.  I was able to work full time mostly.  Two weeks after chemo was started, the test results came back.  We were the first case in the world to be documented with one genetic carrier.  I could have used my eggs.  It was too late.

My mother died half way into chemo from natural causes.  I found her dead.  I brought a bib that said my mother is a breast cancer survivor.  I wanted to hold on to my dream of another baby.  In 10 months, I lost my baby, got diagnosis with breast cancer and lost my mother.  I would bring the bib to every cancer treatment.  I would cry into the bib.  Somehow someway, I was going to be a mother.  My relationship with my in-laws fell apart.  My sister-in-law declined my offer to be a surrogate mother, which I understood.  During Hope’s 5th birthday party, I learned she had a baby named Maddison.  The names sound so similar.  After breast cancer treatment, I began to have anxiety attacks.  The thought would just enter my head, my daughter died.  I also had flash backs of Addison’s death and my mother’s death.  An old obsession resurfaced.  Is there a God and afterlife.  Six months later, I tried to go back to fertility treatment.  I was told to wait for a year.

I started buying donor sperm through a bank and tried to inseminate myself at home.  Finally enough time elapsed, so I could return to fertility treatment.  The two IUI’s failed.  We tried 3 rounds of IVF.  My husband only accepted job offers with companies who we checked out their health insurance.  In March 2014, I failed my last IVF cycle with my eggs and donor sperm.  We had been looking into all options for egg donation.  Please note either egg or sperm donation is covered in any state.  I started looking into options out of state.  In my home state, it was $50,000.  I found an embryo donation program on the west coast that combined donor egg and donor sperm for embryo donation.  Please note this is not left over IVF embryos.  I began to fly out.  I had to keep everything hush, hush.  It was rumored that I was moving to the West Coast by friends and family.

The first cycle failed.  I tried a fresh cycle, which wasn’t easy.  IVF is hard for us.  We have to come up with excuses.  It was really hard to explain why I had to just pack up and fly out.  On August 25, 2015, I had gave birth to my daughter Joy.  She is a beautiful classic toddler.  Infertility was 13 years of my life.  I don’t miss the silent tears of a failed cycle.  I don’t miss googling if standing on my head will make me pregnant.  I don’t miss trying to stand on my head.

I stayed in the field that I loved.  I was able to return to working with children.  I have a specialization in substance abuse counseling.  My job is mom first.  I have been able to find jobs to work around my children’s schedules.

I don’t forgot my journey.  I try to be available to other families with rare diseases.  I tell my story.  Not for pity.  I tell my story in the hopes of someday, we find more cures for breast cancer, infertility and rare disease.  I want there to be a day that I hear Ms. C, Avery and Addison would have had better quality of life if they lived now.  I don’t want other couples to be the first in the world.  I am mostly agnostic now.  I have trying to catch up on building friendships and making my own family.  I accept my family and in-laws as they are.  I also believe I am the captain of my soul.  I made a promise to God that I would use my breast cancer status to improve life for those with infertility and rare disease.  I also try to advocate for cancer patients.  Most of all, I am mom first.

 

Today is my Birthday…

In 2009, the unthinkable happened.  We buried another child due to Campomelic Dysplasia.  We become the first medically documented case of genetic Campomelic Dysplasia.  I was loosing my job.  I was able to find another job.  Six months after my daughter died, I was diagnosis with breast cancer.  I had just got another job through a previous employer.  Half way through chemo, my mother and cat died.  I had to get a new car the same year.  A number of appliances had to be replaced.  I worked and my daughter went to kindergarten.  We went to all her activities.  I wore my wig.   The day after I finished chemo and radiation, our ferret died due to cancer.

For many years afterwards, I ignored my home.  I spent my weekday off from work driving our daughter Hope to school.  I would come home and lay in bed until it was time to pick her up.  I no longer cared about the home or housework.  My soul was empty.  As the years passed, it look like we were going to be the couple who never brought home a child from infertility treatment.  My last cycle failed in March with my own eggs.  A friend who helped me so much during my cancer treatment and inspired me died from cancer.  Another friend relapsed, he took his own life two weeks before my big 40th birthday.  My favorite cats died within three weeks of each other due to stomach cancer before and after my birthday.  I painted a smile on my face.  My world was uncertain.  There was the possibility of another child through embryo donation on the West Coast.  I struggled with coming to terms that this child could not be conceived by my egg or my husband’s sperm.

When the embryo donation worked, my youngest was born.  In pregnancy, I realized how much my depression caused our home to become a shack.  I couldn’t fix it.  My oldest grew up in a shack.  Where are you Ellen?  The million dollar miracle child came home to a “shack.”  I promised my children that I would make this old house into a beautiful home for them.  For about a year now, we have been working hard to fix this house.  I am trying to paint the living room.  We are into problems.  Today, I am not painting.  Last year, I cried daily until my birthday.  On my birthday, the oven went causing a stream of electrical problems.  I thought about this.  My father was very abusive.  He never wanted me and he verbalized it.  I am sure my friend who took his own life would not have wanted to not become the meaning of my birthday.  Through it all, I am alive.  I am grateful for my life.

Although, I have done some things that I need to come to terms with, this year, I am not crying.  At some point, I stopped getting angry and crying.  At some point, I realized I need to give myself a life that I wanted.  So, I stopped looking for my family to step up, I took the wheel.  Some would say, I took the car way off the road.  I am coming to terms with myself.  Where are we going next?

This year, I am not staying home to see who calls, who posts on  facebook  or if the oven goes again for another year.  This year, I am enjoying my children.  I have a whole day of errands and activities.  After all those years of hard work to have my children, my best birthday gift is with them!

Disappointed, Stress, Overwhelmed & Grateful

On the second, anniversary of my first daughter birthday/death, I was holding my new born rainbow as a storm of betrayal was brewing.  Maria, a dear neighborhood friend died after a long illness with cancer.  I had hired what I thought was a good bunch of people to care for my daughter Hope.  My brother hid his son’s autism and I did not know that his anger was directed at some of the people I hired to care for my daughter.  Tomorrow is a horrible anniversary of one of those care givers breaking down and physical intimidating  both my daughter and I.  I had no idea of the demon I had hired.  I was exhausted from learning about Maria’s death.  He told me what he thought of me and my family.  He made me feel threatened for my daughter’s safety and mine.  Somehow, we made it out.  I reached out to others afterwards.  Finally, I decided to fire all the caregivers.  I learned an important lesson that day.  When your gut tells you something is wrong, listening to it.  Instead, I was so caught up in everyone else liking this person that I missed my soul was telling me that this person was evil.

For months later, my mind was taunted by the incident.  I couldn’t sleep or eat.  It was the hardest lesson, I ever learned.  After that incident, I avoid routine appointments during the month of February unless it is urgent matter.  It’s going on 13 years this year, Avery, my first daughter, was born with a rare disease and died a day after birth.  Some years are emotional charged. Others I make it through.  We used to get together with my in-laws and go out to eat to acknowledge Avery’s birth/death.  We haven’t done that in years.  I find comfort in participating in Rare Disease Month, which is February.  I find comfort in doing something special with our family.  Sometimes, we go to a museum.  Sometimes, we go to a restaurant for a night out.

I am having surgery again.   The last ultra sound showed uterine polyps.  I am trying to fix the house, we are in the third phase of remodeling.  (I am sorry to tell you there is most likely going to be a forth, fifth phase then more.)  Things unexpected are going wrong.  We owe taxes.  I can’t meet my own deadlines.  I promise myself not to stay up all night.  Last week was a series of disasters.  Joy, our toddler had a high fever.  Hope, the oldest found a lump in her hand.  It was a cyst.  It was a long night at the doctor’s.  The cyst went away.  We had snow days.  The original blog for this was saved as a draft, but I couldn’t find it. So, I am starting over again

I brought a tablet to catch up on work.  It doesn’t support my work program.  I ran late trying to get the tablet to work.  I was suppose to go to a mediation class.  After an hour’s drive, I was late and the door was locked.  I was in the cold.  So, I went Valentine’s Day and drove back home.  I never got to paint another room.  The refrigerator needed to be cleaned out months ago and it smelled like it.  Then Hope, my preteen daughter got sick.  Another snow day.  I couldn’t cancel with the OB GYN.  My husband had to come home again.  We got up late today.  I couldn’t get the kids out on time.  I got a bunch of angry looks from the receptionist for bring my oldest daughter sick to the pre-op appointment.   They made her wear a mask.  I was spoken to for her not having it on right in front of the waiting room.  We were a half an hour late.  I just get so overwhelmed.  All the rooms in the house need to be repainted.

My husband and I have decided not to sell the house this year.  We still owe a lot of money for Joy’s conception through embryo donation on the West Coast.  It makes sense to lower the bills and try to move.

Yesterday was the ultimate disappointment.  I was looking forward to ending the heavy 21 day cycles.  Sometimes, I am running to the bathroom to avoid an accident.  The surgery was the key so I thought. My doctor tells me the surgery will lighten it for a while.  My uterus is inflamed, which happens sometimes after birth.  The heavy cycles will continue.  I was so depressed.  I don’t run.  I live my life around cycles still even after infertility.

Today, I am just so overwhelmed between the surgery and the house.  I called out tonight.  Surviving what I have has taught me, I am having a difficult time right now. Let’s give thanks.  No one in the family is in active cancer treatment.  My children are in relatively good health other than the stomach bug or cold.  The house drives me nuts, but there is a roof over my head with walls to paint and rooms to declutter.  I am hoping this surgery works.  I am a behind in my schedule with the house.  I am going out this weekend for myself. We are going out to eat next week and going to a local museum.  Then, I have to work on the #rare disease movie with the other mothers about loosing a child with Campomelic Dysplasia. Now that the cyst is gone.  Hope can play her flute again, so I can record the song for the movie.

 

 

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.

Mom’s Weekend Out: The Holistic Fair

The wisdom I have learned from my disaster with the lost of my daughter, breast cancer and my mother was to stop expecting others to meet my guidelines. This is not as easy as typed. Someone in my life seems to be shut down for many years after the genetic test results have come back. So, I knew Thanksgiving time was tough. We argued so much over money, that I was anxious about loosing a day’s pay. So, I accidental scheduled myself for 6 days in a row. Life is gradually improving. The house is livable and manageable. My life quality goes up and down. I can not be out on his non-work nights, which angers me. We are divided yet managing. I start verbalizing the sadness. My friends have left. I am going on four years of searching for peace with this relationship where I feel utterly ignored.

I don’t know if he knows it’s the anniversary of Addison’s death. Communication is slow. He lost his hearing. I am trying to accept what is. I need other adults and it seems I have lost many friends. However, if I pretended to be happy… Maybe, I would have more.

The holistic fair was a great time. I wanted to stay there. I learned what I suspected through doctors will never confirm this. I have often felt the isolation and depression about my recurrent pregnancy loss and infertility created the breast cancer. When Addison died, a few told me I could never discuss this. My triumphant moment was finding a way out from these individuals. Although, I could not public list her lost at the time, later an article was ran in our local newspaper about my survivorship and her lost. One workshop connect stress, trauma and cancer. I felt my tears begging for me to cry, but I didn’t. Tomorrow, I am going out again on a conference about bereavement. There is a piece of me that died. There is a piece of me that was born. This is a piece of me growing. Every now and then, I see a glimmer of hope that maybe we will grow again.

At first, I didn’t want anyone there with me. Then, I saw a few families and began to miss my own. Cellar Service did not always work. So, I called and invited the family to come. My 11 years old and he said no. So it shock me when they came. 12 phone calls later, I took an educated guess and found them eating. I didn’t get to go to every workshop, I wanted that day. I got some family time. At least I know that I am not utterly ignored. The ones I went to are going to be reflections for a long time. I have handouts to review. This is the anniversary of Addison’s death coming up. It’s so easy to get negative quick. This week, I am going to focus on one step at a time. Once again, I over schedule myself to work six days straight. I will get there. I am not talking about working. I have a feeling that I am growing into someone. Let check in. I held that anger about my personal no show list for years. It’s starting to grow into a new experience. I learned I am strong and need to continue to work on being independent. I shut down to the universe trying to have that baby. Sadly, I see some of the same behaviors in Hope. Be passive aggressive. Say nothing. I changing me and hopefully Hope will change if she wishes it.

November Memories: Storm Brewing

This weekend was better. For years now there has been a growing coldness of separate rooms and unspoken problems. During my pregnancy, I began to tell the truth. There is no safety issues here. Just broken hearts and emotional coldness. It started when I picked up his hearing was failing. I was called a number of names. After the death of my daughter, breast cancer and my mother’s death, I shut down. I was on the search of how to get pregnant again. It consumed my life. He struggles with the truth of the lost of our daughters. Every night, it is bottled up and he drinks it down. Sometimes we are housemates and co-parents with legal obligations. This weekend I was really looking forward to a meditation. I asked a friend’s mother to have Hope sleep over. What to do with Joy? That’s the reason, I never went. Sunday morning, I woke up and spoke my truth. I can only work on his work nights because I don’t know if he is okay. I have had to turn away friends with invites, because I need to be home. I left after speaking my soul. Hope dragged her feet because she didn’t want it to be over. I come home and it’s business as usual. He has not said one thing. I speak and I am not heard. I cry and I am muffled. Perhaps this is another good bye in my life. I have said so many. I can’t leave. I want love, but there is whatever is…

Yesterday, we took Hope, my oldest for her last trick treating maybe. In one sense, I speak toddler and puberty okay. Through, Hope may argue not. As they grow, I say goodbye to infant carriers. Sesame Street is back. Then, on the other hand, we are getting ready to say hello to middle school. I hear a lot, “no mom.” I am not talking about the toddler either. I am working to raise these two girls into womanhood.

Life is not over by any means. Here I am typing this and my phone rings. So, I bring up the conversation with him. Oh yeah, I heard you. Okay, well, it’s been a slow progress with us. I am a part of the problem at home. I pulled the covers over my head a few years ago. Now, I am running to catch up on all those areas that I put on hold until the baby came. Well, she is here. What’s next? November started the series of losses. It’s another year that Addison my baby died. I agreed to work all next weekend to have a whole weekend off to go to a fair. I need Strangely enough, I was suppose to go to this fair last year. I feel in love with a beagle named Buddy. He is now Buddy Brian. I had the ticket, but I never went. I had just adopted my dog last year. We started going away at Thanksgiving because it hurt so bad. This year, we confirmed reservations with our in-laws, which was a tradition at one point. With the dog, going away is not so easy. I will have 5 days off, which I need. I am brunt a little. All the holidays are on Sundays. I will need to work the entire weekend before, so I can be home for Christmas. New Year’s Day is a tradition that I work. I am also still per diem at two hospital programs. I am getting those experiences to figure out what I The color of our house was picked. I will be working some extra hours to pay for it all. Just Monday nights. Whether we move or not is up in the air. I am walking with Hope it all works out. I am happy to be here. After years of waiting for that opportunity to make a baby, it’s time to let go and grow.

Goodbye and Hello

Yesterday, was the sixth anniversary of the death of my mother.  She died in a year of many losses.  We had took her cat in after she moved into elderly housing.  I have many regrets about her death.  It includes the constant fighting with my siblings.  They never believed she had dementia.  Her last doctor’s appointment was in days of her death.  She was born in October and she thought it was January.  It was  time for her to start getting her treatment.  My husband and I were in the middle of preparing documentation, when she died from heart failure.  I found her because her cat started dying the same night.  I was in the middle of chemo and Hope was screaming.  I had to get the cat out of the house.  Literally, the cat was loosing consciousness.  He had been at the doctors that weekend, we couldn’t figure out why he was loosing weight.  I went to that house with the intention of telling my mom it was time.  I found her dead instead.  Two weeks earlier, I begged her to take the cat back because I felt the cat needed daily care that I couldn’t give him and she refused.  It was the worst day of my life.  When I arrived at the emergency clinic with him, I handed him to the vets.  I cried. “Is he dead?”  He was barely alive.  My husband didn’t want him put down and I couldn’t reach my mom.  My cell phone called her 63 times that night.  It was not unusual for her to be with the neighbors.  I told the vet to make him comfortable and not to resuscitate him.  I told the vet that I was going to find my mother.

The title of this blog is based on my conversation with the vet the day of the cat’s death.  It was another hard day of my life.  Hope, my daughter was 5 years old, she was expecting to hear the cat died.  I couldn’t breathe when I told her Nana died.  The cat held on.  We were told to come to the clinic so he could be put the asleep.  The vets were beside themselves.  Here I was an obvious cancer patient because I had no hair.  I wear a hat on my days off and I hated my wig.  The cat began to die the second we arrived at the vets on his own.  Both they deaths just 2 of the losses of the year.  Eleven months earlier, I buried my daughter Addison.  I was diagnosis with breast cancer.  That year, I held Hope and my husband close.  Months after breast cancer, I suffered from PTSD.  I remember telling the vet the following when I entered the room, “I am so sick of goodbyes!  It’s time for Hello!  I want to say hello!” My bereavement card from the vet said I hope you get those hellos soon.

Here is a list of good byes:

A relationship with my brother, sister nieces and nephew. ( I pray there will come a day that we can be a family with healthy relationships.)

5 different pregnancy losses

My mother

3 cats over 6 years

2 ferrets

My beloved dance school teacher

My hair (chemo),

My nails (chemo),

My fertility.

My husband’s fertility.

Sense of safety in the world.

Belief cancer happens only to other people.

Brian, a friend that committed suicide.

Rachel, who died from Campomelic Dysplasia last week.

Cars/Jobs/money (low priority on this list.)

 

Hello/Gratitude List (It took us 6 years to get here!  We are still rebuilding!)

Baby daughter Joy, who was born August 25th 2015 (We all knew that would be first.)

Being married to a hard working man for his family.

Another year of watching my oldest daughter Hope grow into a beautiful young lady.

Buddy Brian, the beagle dog who is smart, but a challenging.

Both hospital programs I work for.  In the past year, I work in a different program at the hospital as well as the program I always worked for.

My new job near Boston.

Finished the family room in the basement, which was originally started in 2003 before my daughter Avery died in 2004.  I am particularly proud of that.

A house with better quality air.

A home to come home to.

A car that works.

Food on the table.

My two cats.

My ferret, Princess

The Parenting After Loss Group

All 4 Meditation groups I belong to.

BEING ALIVE! Glad I am not trying to fight any chronic health issues like cancer and infertility.

Starting to feel secure in the world.

.

 

 

How Has Infertility Effected Me?

This is a question from a friend on Twitter.  Before we go further, please note this is a secondary infertility story.  It’s been 11 years of trying to have the family I want.  Our story is very complicated.  There are three awareness ribbons that are our family’s story rare disease, breast cancer and infertility.  It’s hard to separate the three issues.  Here is the condensed summary: At first they were trying to figure out if we could have a healthy baby and the reason I couldn’t get pregnant.  Our first daughter died a day after birth from a rare disease. Another mother who lost her son to the same disease compares the chances of having it like  “being struck by lighting.”  I have been pregnant 6 times.  I lost most of pregnancies in the second trimester.  I have lost babies from 6 weeks of pregnancy to one day after birth.   We were in treatment for infertility for male infertility to recurrent pregnancy lost.  We were the first documented case known at one time to pass this rare disease unknowing to our babies.  We do have a healthy 8 years old daughter, who I am grateful daily. 

After the still birth of my last baby, it became clear that there was a genetic cause.  I can’t tell you how many years we spent at a fertility specialist and geneticist office.  Then, I was diagnosis with breast cancer.  I decided not to save any eggs as I went through chemo because we never thought we would know the answer.  Two sessions into chemo, I learned I could have a baby, but it was too late.  Now the infertility issue is genetic, male infertility and female egg quality.  I am 40 now.  I started at age 28.  Our next step is to board a plane and fly out to the west coast for an embryo donation.  Donor embryo, sperm or egg is not covered by insurance. 

Effects:

Self Esteem: I feel different all the time.  I struggled with guilt and bereavement.  I also stop telling my family, when I need lost another baby.  They didn’t know I was pregnant or getting another procedure because the baby died.  I wanted control.  I took over the counter meds to have another.  I did crazy things like diets etc.  There is a different story of why I have always felt different, but let’s keep it short. I have been hit by lighting so to speak too many times. 

Relationships: “Be grateful for what you have.”  I hate that sentence.   For some reason why do we not let people grieve.  The babies did not die yesterday.  Every now and then, I see something that rekindles the grief.   My husband and I did not come from the classic family upbringing to say this nicely.  We don’t have the same friends.  I walk into a social situation and I am most likely the one in the back not speaking.  I wouldn’t get into how many pregnancy announcements I have heard over the years.    I asked one person to be a surrogate mother, when I went through cancer treatment.  She declined.  I understand why.  She had her own child and named it the same as the baby, who I gave still birth to.  As for my husband and I, we have had breast cancer, genetic testing and infertility.  We are still married. 

Religion/Spirituality:

At various times, I struggle with if there is a heaven.  Especially after loosing the first one.  I have struggled with if there is a God too.  I go church every week, but I would rather not be there.  Too many birth announcements and babies for me on some days. I go to take the 8 years old to Sunday School.   

Holidays/My Birthday/Anniversaries of Losses: Many holidays I had to have an ultra sound or blood work.  My birthday was a sore topic prior to this infertility to my past.  I turned 40 this year.  As a cancer survivor, I give thanks.   I cried, because my eggs are of poor quality.   So many people do not live to see their birthdays.   I miscarried during Christmas one time.  One baby died a week before Thanksgiving. 

Our Daughter:

Our daughter has had difficulty at times coming to terms with my last still birth.   She was 4 years old at the time.   She comes home crying because so and so is a big sister/brother.  Why was it her sister who had to die?  When our we going to have a baby?  Her summer camp is performing at Disney World.  I had to tell her she can’t go, so we can fly out to the west coast for vacation, because mommy and daddy have personal business. 

Financial:

We could live in a bigger house in a nicer place, but can’t.  I am lucky to live in a fertility insurance mandated state.   If the company buys health insurance or a prescription insurance outside our state, we don’t have fertility coverage.  So, we had to cover the cost of medication for IVF, because it wasn’t covered.  The cycle failed by the way.   Sadly, donor embryo is not covered.  Also fertility preservation was not covered.    It costs an arm and a leg to save an egg.  Due to the program out on the west coast, we are saving half the money if we stayed in the state.  However, we still need travel expenses and a loan to take out. 

Career:

About two years ago, I took a lower paying job to be able to make my own schedule.   I have two jobs, which I alternate schedules to make sure money is coming in.   There are no benefits.  I have goals for my career.  Look at the time it sometimes takes to coordinate a cycle.  Now, I am flying to the other side of the country to get pregnant.  I am trying to decide what I want to do when I grow up.  Yes, I am 40 and still need to grow up.  I do know what I want.  I am in the field, but need some training classes.  I am polishing.  Last training class, I didn’t sign up until the morning of.  I had an embryo transfer (last IVF own eggs) which made me late.  Main office said it was okay.  The lecturer didn’t know.  Need I say more?  There is an excellent training in July.  I will hopefully being flying out to the west coast for a fresh embryo donation. 

So, I think that is my summary.  I do have 3 people, who are supportive in the real world, who know why I am going to the west coast. I have a larger group of friends, who only know it’s an advance fertility treatment.   The child will be told about the embryo donation.  However I am not sure if everyone would be so supportive or treat the child differently.