Category Archives: #childloss

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.

#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!

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.

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.

Healing In Our Journey & Sending Healing Wishes To Others.

It is with a sad heart that I learned some devastating news today.  After the deaths of my daughters Avery and Addison, I stop sharing all my social media accounts with the “face to face world.” My family is old fashion in parts.  It’s the old thinking that after the baby dies, you never discuss it again.  So, occasionally these people show up and put them on the restricted setting.

I remain in contact with the families and patients of #campomelicdysplasia.  I made a promise to my children that had died that I would become an advocate for #raredisease  and parents of #infantloss.  My heart broke into two today, when I learned one of co-leaders in a group had died.  I was in mist of putting up photos and I saw her picture all over the place.  I learned she died last night.  Last message was about developing a movie for rare disease day about the families and people living with the effects and the after effects of this cruel disease.  I kept trying to make a demo, but the sign I wanted to shoot is down to represent Avery and Addison.  Her family is suffering from a lot of lost.  Her brother died some time ago.  Her mother is in the process of breast cancer treatment.  I sobbed.  Rachel, our co-leader, touched so many lives.  Sadly, she is gone…  Her family’s storm is reminding me of my own.

It reminded me of my storm from six years ago.  I am still trying to rebuild.  It effected my marriage, a relationship with my in-laws and my sense of spirituality.  I joined a bereavement group about the loss of your mother.  I was suppose to go tonight.  Unfortunately, I am not sure if somehow, I got sick or is it motion sickness.  Shortly later, I got sick in front of the kids.   I think it was motion sickness.  I held down lunch and ice cream too shortly afterwards.   It’s also possible like all young women facing breast cancer and chemo treatment that I may be going through menopause.  Tomorrow is my appointment with my OB GYN to figure this out.

We also joined a parenting after loss group that is 30 to 45 miles away.  My husband has lost his hearing.  I was typing away on my cellphone.  I thought he was following the GPS, when I looked up and realized he is lost.  I am not blaming him for loosing his hearing.  It’s tough, because I am adjusting too.  Every weekend, we are arguing about something else lately.  I took myself off the Nicotine Gum.  Remember, I can’t tell him because if we argue, he will tell me to go smoke.   I took Benadryl at night to help me sleep.  I over slept a few times.  We actually have separate sleeping arrangements.  I am tried of that too.  I woke up and the tradition is for me to get the coffee.  Here we are arguing over who is going to get the coffee.  Finally, I said forget this.  I drink Green Tea instead.  Talk about major withdrawal headache and feeling sleepy. It’s these silly arguments.  I am calling my Aunt crying that my marriage is over.  Hope was at a birthday party after we went to the infant loss event.  I don’t know what do I want.  Do I give him access to me or keep him arms distant?  I look at those kids and I don’t know what to do.

I was pretty emotional at the playgroup event, which was a  meeting fund raiser activity.  I have been through so many losses am I disconnected for society as a whole?  I am starting to feel closer to people online than real people I know.  I got almost tearful talking about my son Haven.  I never got to hold him.  We have been discussing when your rainbow is the opposite gender as your lost.  Not that I want to sound ungrateful.  I have two beautiful girls.  There is a lost of my son. I also feel I am grieving the end with menopause.  We could never afford the tracking out to the West Coast again.  My husband’s family did give a check for the siding.  I have all these emotions.  The anger of why weren’t you there.  I look at those girls.  Listen, I don’t have the exact answer.  I decided to invite them for Thanksgiving.  I want to have them as close as we were.  This state of living like a divorce family isn’t harming the kids.  This agnostic is just going to have Hope it will work out.

I was so worried yesterday about my weekend job drying up that I turned the car around and never went to church.  Today, I called and I was asked to work the next two weeks.  I get so worried about things.

 

 

 

The Emotional Labor of Labor Day:

This weekend has been a bit of a emotional roller coaster.  There is going to be a management turn over on my weekend job.  I think it’s for the best.  So, I texted the 2 women who  work with me and supported me  the most.  Everyone got a personal call, but me.  My friend also confirmed she is in the process of a divorce.  I was talking to her and all of sudden she just hang up, because her boyfriend called.  The good news is I have been asked to work a few programs over there.  Until the dust clears, I am able to work the other places.

Joy is getting very big.  I had a lot of cancer treatment due to the breast cancer due to the left arm.  I know from tests after treatment there is scar tissue.  I struggle a lot to hold Joy.  I made it work for so long with the infant carrier.  Friday night, I attempted to put the new car seat in.  My husband and I struggled for  a few hours in the driveway.  Finally, it was so late, I gave up.  That is the reason, I started with one car in case there was a problem.  The next day, I had to leave work early for someone to fix it.  Finally, someone explained this to us.  The hospital where Joy was born fixed it.  It ends up I got the best model.  Unfortunately, I drive a small car.  It was the reason we struggled so bad the night before.  The man spent 10 minutes putting in the car seats.  He says to me, “we do this daily.”

Since we had to drive an hour to have the car seat fixed. We went to that restaurant we missed on Joy’s birthday and we went to the drive through for the movies.  Joy is a toddler now.  Sitting still is not her idea of fun.  We had to walk her around the car constantly, until we made it through one movie and decided during movie two that we were too tired.  It was 1 something AM by time I went to bed.  Joy was up 7AM.  I don’t know how this all started.  Maybe it was two people over tired.  He brought up house work and I brought up the new house.  The original intention of us buying the house was to move out, when we saved enough money.  We could only afford a starter house in a violence ridden city.  The infertility came and the breast cancer came and tons of bills.  He says something, I give my heart to clean up this place.  He ups and changes his mind all the time.  My argument is there is no after school at the middle school in the town our daughter goes to school in.  I will not have her take the bus home in a city on the 100 most violent cities in America list.  I understand due to terrorism no place is safe anymore.  I have been working my heart out not sleeping to work on this house to get ready to sell.  We ended up arguing all day over money and goals.  I kept saying how about I just work the entire weekend now for now on.

Finally, after asking him to make the call for marriage therapy for years, I made it myself.  The baby’s daycare handed us a fund raiser packet on Friday.  We talk about this a center is so much more money than the home day care.  The home daycares wouldn’t take Joy as an infant, because I think a baby is more work. I started looking into home daycares again for Joy.   I am not trying to end my marriage here.  I think our girls deserve a better life.  I canceled plans with my aunt yesterday, because I didn’t want to cause any more bills.  We did get to go an island locally.  The tension is so high right now, we had a fight because the oldest asked for ice cream.  He brought her ice cream.  I refused it after that conversation and I had a nap.  I have had insomnia all summer.  I am cutting down the caffeine.  Due to his medical condition, we don’t sleep in the same room.  Gee, due you think needing to sleep in one position near an AC so I don’t kick out the hose may have something to do with my insomnia?   So I told him, I want my own room with a bed (PERIOD THE END.) I am going to stop using the nicotine gum.  Somewhere all this infertility, genetic testing, breast cancer and hearing loss has caused a rip.  We are trying to repair it.  It’s so slow.  Bills are high because in the summer our oldest needs all day child care.  August was their birthdays.  This morning, I told him fine we will just get a condo.  I will get rid of the swing sets.  I feel like he is pushing me to give up on selling the house or to not move.

I got rid of my Facebook account with people I know in real life.  Instead of getting rid of them all together, I handed it over to Hope.  My family is pretty emotional abusive.  I started a new account where I can be a grieving mother openly.  Labor day can be emotional.  It’s the anniversary of me loosing my hair to chemo.  A reminder at times our two daughters are missing.  When Hope, our oldest was in kindergarten, she refused to let me drive her to school because I had to transition to the wig and she was embarrassed. Some years, I get more emotional than others.  Our first daughter Avery would be 13 years old.  I should be dropping her off at middle school.  Addison should have started the first school for elementary.  It hurts.  It comes back.  You are never 100% cured.  I have been working on extra projects for Rare Disease Day.

One of the no shows at Joy’s birthday pulled a stunt.  Hope gets a private message for the mother, my husband’s friend.  His goddaughter got accidently pregnant and gave birth to a daughter, when I was learning about donor egg. The little girl is having a birthday.  So, I said something to her about not showing up for Joy’s birthday.  I work on Sundays.  Literally, no apology, but are you coming to our event.  Really?  I said something to her about it.  It ends up she had to work.  That was fine, but why didn’t you tell us?  I tell her I work so she starts pressing me for an answer about my husband and kids.  I said to her, here’s his cell phone number you need to ask him directly.  Literally no apology.  We are going to different social events.  Time for new friends! Joy walked for the first time too.  What a weekend!

Follow Up On Last Post

Last year, I took a seminar on Speaking Your Truth. I reflected on my sadness about the year the baby died, the breast cancer came and my mother died. After that year the following year, I had these negative thoughts that would just appear out of no where that something bad had happened to my only living daughter. It was so really. I became obsessed with is there an afterlife for a while. There the anger came back. The anger is lessen. However, when we were going on those trips to the West Coast and in fertility treatment, I stopped telling people all together. The failed cycles and miscarriages were my bitter secret tears. I silently cried. We say this now, those concerns were weeks of my life. When I took that seminar, I realized often I have been not saying my needs. I get m Instead of holding secrets, I expressed them. My husband and I have been on quite a journey filled with medical tests and waiting for test results. We learned who the carrier was. This year is the year of the mold in the house could be seen as irony for our pain literally our own brand of the black plague. I stopped cleaning and closed the house for years. I was very depressed after cancer treatment. I have spent every minute trying to fix this. I been telling people we feel alone. Then, I sent out the request. Only one person is going? Really? I have been there for so many. I almost canceled the whole thing. Then, Hope gets a migraine last night and my anxiety hit the ceiling. When you loose two children, it’s always in your mind it can happen again. We are the first documented case in the world. Sometimes, it’s hard to connect with others. I became the best small talk expert in the world of blowing people off. Anxiety was really high last night. I told him some things and he told me some things. I think it’s going to be a long process of healing for us. We’re not giving up. I have been going to these meditation groups and reaching out, but only allowing others to get not in arms length. When Hope as a baby had horrible caregivers, our trust of others went down hill. I am looking at the rejections today and I said to my husband, let’s reach out to make friends again as a married couple. There is this group, I like that is about family and self improvement. I spoke to my husband and we are going to try it. I need to go back to a support group. Basically, yes we were lucky to have a baby twice. I think deep down we are looking for a home. More than a house, a spiritual home of friends with acceptance. Being the first documented case has quite a large amount of luggage with it. I don’t sit on a pity pot about the first documented case. I say we better step up to the plate. There may be a second and third documented soon. I think people have moved on and we as a family need to move on too.

August Already? The Birthdays of The Rainbows

It was July 2006, when my husband and I were preparing to celebrate our daughter Hope’s birthday, we decided to have another child. Our first daughter Avery had died from a horrible rare form of dwarfism known as Campomelic Dysplasia. None of us knew it was going to be 9 years later until we brought home another child. We had to weather tougher storms and build our own ark. We battle recurrent pregnancy loss at 6 weeks, 18 weeks and 13 weeks. Campomelic Dysplasia hit our family again, our baby Addison died. I was diagnosis with breast cancer and in the middle of chemo, my mother died. At times, I wonder if I would drown in the sea my own despair. I remain hopeful. I cooperated with cancer treatment and I had chemo and radiation. Afterwards, I told my repeatedly cancer treatment team that I was going to have a child. The damage was done to my ovaries by a combination of age and cancer treatment. We needed an egg/embryo donation. We ended up flying across the country and our second daughter Joy was born within a few months of me celebrating my fifth year as a breast cancer survivor.

Birthdays have been a bit of a sore spot in our family. Family members deliberately do not show or attempt to make our child’s birthday into their agenda. Hope is turning eleven and she is aging out of a birthday party. At first, it was a disaster of coordinating an activity a date with the mothers of her friends. I ended up switching work dates and switching her mall activity with three friends to another date. I am taking her birthday off and she is picking something to do with us as a family. Then, we are going away for an overnight at a hotel she wants to visit. This leaves Joy’s birthday. Many people have seem to leave our lives over the past few years. We have been working on the house since last April to bring the house back to presentable condition. We ignored so long to go to doctor appointments and to pay for infertility treatments. Last weekend, we again tried another trick to kill the mold problem found, when our floors were done. Last Monday, I burst into tears. Many nights, I washed the walls and floors. After speaking with professionals, they feel the mold will die with the dehumidifiers on. I am simmering vinegar to neutralize the odor in the air. We brought a mini crock pot to neutralize the cellar. My husband and I are healing from the damage of all the years to our relationship. We just started on yard work because we spent so much time in the house. Hope is finishing with Art Camp this week and I am looking forward to spending time with her on Mondays and Tuesdays. I just started a new job and took vacation in April to start fixing the house. I took the girls birthdays off, but I will be working through. My husband took the last week of August off to spend time with the girls.

This leaves me with Joy’s birthday. My husband’s family had a separate birthday for Hope already. We decided to have a family barque and to celebrate Joy’s birthday. It’s more a social. We asked everyone to bring a side dish and to make a donation to cancer treatment or the rare disease organization we picked instead of buying gifts for Joy. I brought a couple of sprinkler toys and sent invites. We will see who comes. It’s a long day and I told people it was okay to drop in between the hours of 11AM to 7PM. Hopefully, it will be a good turn out and we can renew our friendships with several people. I still have a few small projects for Hope’s and Joy’s birthdays.

Meanwhile, I continue to work on career goals for myself and working on training Buddy, the family dog. I am hoping to resume some training classes that I put on hold due to the fertility treatment. I am hoping to get Buddy trained as a therapeutic support dog.