Asinine With A Capital A: VSP Plan

Tuesday, the bump was removed from my ear.  It did not hurt going out as the biopsy. The bump on my ear may have been caused by my eyeglasses.  Wednesday, I wore my contacts.  My eyes dry up quick and get irritated.  Wednesday morning, my eyes are stinging on the way to work.  I take out my contacts to put a solution in.   At some point, I realize my left contact is not in.  I am on the floor on hands and knees for over an hour.  I call my eye doctor’s office.  Drive here and we will give you a new one.  I am at work 15 miles away.  I have to find an optical shop to buy one contact lens in the area of my workplace that  I could walk to.  Not one place was willing to help because I am not a patient.  I put the one lens in a dixie cup with some solution.  I was getting a major headache due  to the world one eye perfect.  This is another point in my life where I feel no one is there.  I did my job blind.  I can’t see the time.  I ran late.   It screwed up my day and my client’s day.

Of course, Wednesday was car seat installation day.   We had to buy a new one to gave the old one to the babysitter for the summer. 3/4 of my pay goes into child care for the summer for both the girls, when school is out.  It’s a placeholder for my job. So, I could only figure out to make myself an eye patch with paper and an elastic band to drive home on one contact lens.    I took the back roads home.  I drove straight home to get my eyeglasses, then the girls, drive through for dinner and straight to the police to have the car seat installed.

Today, the doctor calls. The pathology report indicates the bump on my ear was caused by pressure by either my glasses or the way I sleep.   There’s a  risk for the bump to return.   I suffered with it since mid-April.  The bump hurt.  It throbbed!  So, I called to see if I could get a new pair of eyeglasses.  I am due in October for glasses.  I was told that I couldn’t get glasses paid for through the plan.  Are they kidding?  Just buy another pair and get 20% off.  LISTEN 3/4 of my PAY IS GOING TO CHILD CARE THIS SUMMER!  I seriously doubt I afford to pay 20% off as I will be just barely taking home a quarter of my pay after childcare every 2 weeks.  There is a mortgage, a birthday party for the girls and a conception bill for my daughter’s embryo donation.

Meanwhile, it looks like I still need to figure out how to incorporate working around my oldest daughter’s school schedule at middle school.  IT IS EXTREMELY TOUGH WHEN IT IS YOU OR YOUR HUSBAND.   Where is this village that people talk about to raise a child?  Did I get gypped a village?   Two summers ago, I was mentally prepared to enter my own C-section alone, because my mother-in-law was trying to bail on watching my oldest as I gave birth.  We never ask for her to care for our children.   I wish I had this family/village to help.  Unfortunately, my mother died from some form of dementia.   We live in a city on a list called the 100 most violent cities in America. I keep trying to get my girls out of here.  IT’S THE EYEGLASSES, THE CO-PAYMENTS, GAS FOR THE CAR etc… that keeps us from buying another house and moving.  It’s like which came first the chicken or the egg. How do we get out, when bills are piling?  I could work longer if my oldest could walk home from school.  The houses in that town cost way more than my current house is worth.  I am upset and stressed.

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Broken Heart:

I am suppose to be up starting the kitchen painting.  I just don’t want to paint.  It’s been about a year and a half of remodeling. My cycle came up extremely heavy and I bled heavy for 5 days, I am worried I am a little iron low.  My ear cyst gets removed Tuesday and I have been making sure iron is in my diet.

I am sad today.  For 4 years now, I have been struggling to make things right with someone.  Last December, I made some choices.  No one knows.  I am not 100% innocent on these matters.  I got talking to an old friend about how I would cut this person off completely if I could.  I told my friend I remember who he is.  He lives in active addiction.  He is not violent or out driving under the influence.  I would like to cut him off  and scare him straight to himself.  I try this once and my daughter was crying and begging him to stay.  I finally gave in. I am not really asking him to leave.  I want our relationship to remain.

Due to my choices, I have made a new friend, who has been extremely helpful.  My depression appears a lot better lately.  It is hard to smile, when you bleed 20 days average a month.  I have been really trying to sleep more because they think this connected to this.  My only remaining choice is going to raise my daughter’s anxiety.  I struggle because there maybe permanent ramifications for the intervention.  I asked for 20 minutes of his time without him being under the influence without the kids.  First night, he drank.  So, I said tonight will be the night and reminded him.  It was getting late, I thought I was in the clear.  I went to speak to him and that familiar smell was in the room.  I can’t do this tonight.  So, I got angry and told him so.  The matter got twist into  let’s talk about me smoking.  I was mad and left.  I sat starring into space in the living room.  My heart broke.  So, I have been anxious about this part of my life.  I survived cancer and buried two babies.  This is an old saying, “life is too short.” I am going back to the 12 steps.  I tossed for a bit last night.  I am a professional.  I should have the answers.  I don’t.  I need a different work schedule to  accommodate my daughter.  It feels like one of jobs has changed their minds.  I may need to quit next month.  I would loose more money.  So a lot has been on my mind.  As I often say, both kids and adults are healthy, I do have gratitude.  I need to start painting before work! I will keep praying and saving money quietly.  The intervention if it goes down will happen in the fall.

Through The Briers: A Rose Was Found!

My ear has been throbbing away since the biopsy.  After all these days of worry, good news prevailed!  The lab report was normal! Whew!  The polyps in February and this cyst on my Breast Cancer Survivor Anniversary all points to time to take better care of yourself.  Next time may not be a warning shot!  Tomorrow is the Friday before Memorial Day, my anniversary of breast cancer.  It’s raining here, but sunscreen will be top priority this summer!  Time to celebrate with walkless events with the family!

Briers For My 7th Breast Cancer Anniversary

Our family has been facing some medical issues recently.  I took a break from remodeling.  Sadly, my schedule on days off have been very booked.  The family ferret has insulinoma (caner of the pancreas).  She has required multiple trips to the vet to check her sugar levels.  My oldest daughter has been having dizzy spells.  I feel like a cab.

Since the family vacation in April, I found a lump on the top of my ear near the skin connecting to my head.  It has seriously hurt, when I wear glasses.  I thought this is a cyst.  For weeks now, I have been trying a number of home remedies to get rid of it.

I had surgery to remove a number of polyps from my uterus in February.  I was having heavy bleeding and 21 day cycles.  Last week, the heavy bleeding returned.  I got up and left stains everywhere.  So, I called the OB GYN.  They made an appointment for this week.

On the same afternoon, my phone rings again. My daughter’s doctor office called with a neurology appointment for Tuesday, which is the same day as my OB GYN appointment.  This neurology appointment is in the morning.  The OB GYN appointment is in the afternoon.  Both are hour drives in the opposite direction.  I thought no problem.

Monday was my physical.  I had been suffering with the bump on my ear for awhile.  I had to take the youngest with me, since my husband took Tuesday morning to go to my oldest daughter’s appointment.  I showed him my ear.  He felt a Ears, Nose and Throat Specialist should look at it.  He was concerned about skin cancer and if it should be biopsy.  Cancer again?

My toddler fell asleep on the drive home.  I sat in the driveway in disbelief.  My phone rings again.  The specialist can see me mid morning on Tuesday.  I felt so emotional drained.  Yes, I do have my girls and my husband.  There is just no family involved in our lives.  There isn’t an aunt or a grandmother to call for help with the kids.  It’s in these situations, I feel very isolated and alone.  (My last C-section erupted with an argument with my in-laws about who was going to take care of my oldest.  I actually mentally prepared to go into a C-section by myself with no support.) I couldn’t ask them for help.  I spoke to a few friends about the lump on my ear.  It made me feel slightly better.

Worst of all, I have been working Monday and Tuesday nights at my other job.   The neurology appointment for my daughter made me anxious.  I buried two babies due to a rare disease.  There was another part of me that knew this was routine.  My recent surgery on the polyps reminded me how alone I am.  I am running all over the place.  I got my glasses tighten.  Hope, my oldest, was anxious about the state exams and the neurologist appointment.  I promise to take her to one of her activity stores.  I spoke to my medical oncologist, who said I couldn’t have a hormonal IUD for cycle control due to my previous history of breast cancer.  Some of the IUD’s can thin and make a cycle quicker.  We also talked about my ear.

Tuesday morning at the neurologist appointment, it was a bit of a rough start.  I am staring at this genetic history form and I am tired, drained and overwhelmed.  I am telling her it’s not a good day to ask me if I am in good physical health.  Another cancer diagnosis my happen again.  Finally, I said, “I am struggling with this form.  Our family is the first documented genetic carriers of a rare disease.”  The person, we met with softened.  All sudden, I felt she got it.  Basically, Hope was diagnosis with Vertigo.  They want us to see a Ears, Nose and Throat Specialist to rule out allergies.  One appointment down. My husband asked to work from home to cover all these doctor appointments.  My toddler is very active.  He takes Hope to school.

I call my aunt, who is 80 something.  She sounds horrible and wheezy due to a cold.  I go to check on her.  I meet the Ears, Nose and Throat Specialist and explain all the appointments I am going through.  She was very understanding.  She told me that the lump looks like a cyst, but it should be biopsy.  She explained if it is cancer or not cancer, it needs to be removed only.  More good news.

I decide to drive home and drop by to see the toddler after eating lunch at my favorite bakery from my childhood memories.  I am wiped out.  I figure I better update the school nurse.  She says to me, “your daughter landed wrong on stage. She is here now.” Now, I know I have to take this kid to the walk in clinic after school.  My ear starts throbbing bad from the biopsy.

The OB GYN appointment was okay.  There is little they can do to control this bleeding.  I leave and I go to check out.  There is a couple sitting down talking with check out.  I go up to the other window a few times.  No one comes.  So, I give them their space.  All of sudden, a medical receptionist screams at me, “is someone hiding in the hall.”

So, I corrected her.  I told her, ” I am not hiding.  I have been at the window twice and no one is paying attention.” It’s been a miserable day.  I hate doctors.  I am at the end of my rope.  My ear is really throbbing.  No painkiller is touching it. When the receptionist is checking me out, I am telling her to retell me the information.   I called my boss and asked to go in to complete my work and leave early.  She agrees.  I can’t miss work since I have no vacation or sick time.

I can’t go to another doctor.  I just can’t.  So, I called my husband and told him to take the oldest to the doctor’s.  I got good news mostly.  I felt so emotionally drained today.  My oldest has a groin injury and she can not walk.  I spent half the night finding other things for our family to do this Memorial Day Weekend that require no walking.

I have come a long way since starting this blog.  I stopped complaining and I am doing things to improve my life.  I am making friends.  I am aware I can’t discuss my baby loss issues with them either.  I tried to get out once a month with my friends to take care of myself.

It was the Friday before Memorial Day that I was diagnosis with breast cancer.  It brought new meaning to LONG WEEKEND.  Today, I finally told my oldest what is going on with the ear.  It was so hard this morning because she was in so much pain and I work during the days Wednesdays through Fridays.  Even if I could stay home, she would have missed the state exams.  She had to go to school.  My ear just throbbed today due to the biopsy.  I am hoping for better days.  I am also taking this as a warning sign to take better care of myself such as count my steps, quit smoking and sleep right.

Disappointment

We are a month away from school ending.  My daughter is going to middle school.  There will be no afterschool care.  She goes to school in another town without public transportation to our city.  I have been working hard with both part time jobs with the total of 4 different programs to develop a working schedule to match her school schedule.  I had hoped to move this summer as well to a new house.  Our current house is way better.  I am keeping that promise to bring this little house to life again for my daughters.

I got so tired of painting the house that I have stopped.  My oldest goes to dance competitions.  Her last one is this weekend.  We decided we don’t have enough money to update the powdery pink bathroom that screams of the decade that I was born in.  I had so many hopes.  My oldest is 11 years old.  We live in the 100 US most violent cities.  I don’t think she is ready to stay home all day.

This year, I found a daycare for my youngest in September, which follows the school year.  Last year, we hired a babysitter, who my oldest knows because she works at the girl’s school.  I decided to pay the babysitter more to watch both girls for the summer. I promised an amount of money.  I did the math.  I would be left with $60 every pay period.  So, the woman is kind enough, we agreed to a different set amount of money.  I am embarrassed that I can’t pay her the way I want.  The amount leaves me with $200 every pay period.  So, I have to pick up some extra half shifts.  All that hard work to have another baby and I can’t spend the time with the girls that I want.  I will survive this.  Hopefully, next year will be different.

August is their birthday parties. I am not sure what this one will be like.  Last year there was a lot of no shows or regrets.  I have been buying gifts now and putting it away.

Last week, I was anxious in my own skin.  I don’t take care of myself the way I said I would after my surgery in February.  I do not sleep well.  Sometimes, it’s to get stuff done.  I am going back to counting steps and changing my diet.  I actually want to stop drinking coffee.  I want to quit smoking.  I have been experiencing disappointment.  The extra half a shift is only for the summer.  The girls are getting older and I know child care will get easier.  My oldest is in a hard age group.  She is not quite ready to stay home 10 hours a day alone.

My body has been telling me bad news.  I had long 21 day bleeding cycles with 2 days of extremely hard bleeding.  They found polyps and removed them.  There has been some success.  My bleeding cycles are 11 days long.  Unfortunately, I overflowed twice at work at both jobs.  It was embarrassing.  Thankfully, I don’t think anyone noticed.  I had to reach out to my OB GYN again.  I see her next month.  I am worried the polyps came back.  It’s also anniversary time of my breast cancer diagnosis.  My body is busy making cysts looking small bumps to make me worry.  I need to talk to my doctors and I will.

 

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.

A Letter Of Gratitude: To Egg Donors & Sperm Donors #NIAW2017

Dear Egg Donor and Sperm Donor:

My youngest daughter was conceived by embryo donation.  I had gone through cancer treatment and my husband could not have any more genetic children.  I will never be able to thank my daughter’s egg donor.  She went through surgery to give her eggs.  There is open contact with the sperm donor, when my daughter reaches 18 years old.

Thank you for the countless medical tests and procedures you go through.  My daughter was born after a string of losses and after I under went cancer treatment.  It was a tough decision for us.  I didn’t want to end my pregnancy life with the still birth of our last daughter Addsion.  My oldest had a tough time each time someone became a “big” sister or brother.  It was a long journey for us to consider embryo donation.  We could not love her more.  She is our own.  I wanted to acknowledge the options an egg or sperm donor give to an infertility couple.  This choice may not be the best option for everyone.  We are individuals on our own journeys.  For you who choose to donate, thank you so much for this option.

Sincerely,

Ellen

 

#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.

 

The Rekindling Of An Old Pain: Syrian Murders

I don’t speak much in the real world.  Shortly after my first daughter died, I learned a few people have no tolerance for the bereaved mother.  So, I completely shut down.  I only greeted people and learned how to avoid conversations.  My first born was born with a rare disease.  We only had one choice a do not resuscitate order.  For months, I struggled with her death.  She died in her parents arms.  Some people do not allow us to openly grieve her.  Infant loss is taboo.  A baby with birth defects is more taboo.  My body and mind knows different.

Unfortunately, when I shut down for years, my oldest absorbed these social skills.  I am going to apply this story about my daughter to the murders.  One day at church, the kids were asked by the Reverend, “does anyone know what the golden rule is?”  All of a sudden only one hand went up, my daughter who never talks.

She said, “It’s a rule that you should treat others the way, you want to be treated.” The church was silent.  My daughter like me as a way of provoking deep thoughts because we barely speak, so when we speak, it can be profound.  I was giving her an applause in my mind.

I barely watch or read the newspapers.  Since my first daughter died, I understand what it means to be a bereaved parent.  I find the news overwhelming for me.

When I first saw the story about Syria, I thought this isn’t real.  On social media, I have been exposed to others following the story.  I see the images and I am close to be flooded with memories of my own loss.  To get a person to kill another, the person has to see others as objects.  I am broken we have people who can see people as objects without feelings.  I should be painting the house.  Here I am in emotional disbelief about kids as young as 4 walking to another country.  Don’t they matter?  We need to teach the golden rule more.  We need less movies about murder and more about compassion for one another.  I was emotional neglected growing up by my father.  It’s only recently we acknowledge the impact of verbal abuse.  I hope I clear my energy this morning, because I am being flooded with memories.  More compassion world!

Two Cancer Survivors Meet At A Restaurant

I had the best time celebrating my birthday.  My oldest and I went to pottery together.  We went out to eat.  Joy’s bottle was forgotten by accident at home.  Five o’clock is her worst time.  She does not suck her finger or use a pacifier.  She has been known to scream from the next town over to home without that bottle.  Before she had a complete melt down at the restaurant.  She did as Joy does.  She looks around the restaurant and makes eye contact with someone.  She spends the entire time waving and communicating with the person wherever we are.  That’s how she earned her nick name mayor.  This one woman was speaking to her in Italian and using sign language.  Joy was starting to have her complete melt down over the bottle.  The woman comes over with a twenty dollar bill for Joy.  I thanked her and declined it.  She offered it again.  This time I nicely declined it and offered a suggestion, if she felt so strong about it to make a donation to the American Cancer Association.  She shook her head no and told me, “I have cancer.”

I explained I am a breast cancer survivor.  We got to talking and she is terminal with a blood/bone cancer in her late sixties. Late sixties is still too young.  She told me in so many words that it had been 8 years.  On her way out the door, she told me that I should teach Joy, who was in the middle of a big melt down, baby sign language.  I explained I was teaching it, but I have ran out of time.  I explained, “I am remodeling a house.”

She looked at me and said, “spend more time with this one.”

I am agnostic, but sometimes I see the spiritual side of these meetings.  My mediation teacher always tells me to listen and think about why things are happening.  He means it in a spiritual sense.  I am thankful for the message I got tonight.  Sometimes, I get overwhelmed with the house, jobs and duties of driving my oldest.  This message was a big one.