Tag Archives: #cancer

Officially Saying Good Bye To Being Pregnant: Pregnancy Loss Awareness Month

Pregnancy was a Pandora’s box for me.  This is how I explain this to my daughter Hope.  I opened the box and my first daughter Avery died of a rare disease.  Then, Hope came.  The box stayed open and I went on to experience 4 more losses and infertility.  I learned our family was the first documented medical case to carry this horrible rare disease.  A second child Addison died.  If that wasn’t horrible enough, the demon of breast cancer came out of the box and I was diagnosis with in six months of my second daughter’s death.  My mother died 10 months later.  For years, nothing.  No baby.  Then 11 years after the Pandora’s box was open, our last daughter Joy was born.

Joy is two now.  I started the family space cellar a year before our first daughter died.  For years, it nagged me.  After Joy was born, it was finished 11 months after her birth.

For years, I would store everything that Hope had in that cellar.  Joy’s unfinished nursery haunted me before her birth.  Hope would come home in tears. Another baby brother or sister was born at school.  When will it be our turn?

At age 9, Hope asked me to paint the room that is now Joy’s nursery because she felt it was too childish for the playroom/home office.  When I started the trips to the West Coast to start my embryo donation cycles, Hope decided that room was bigger and she asked me to let her switch.  I said, “no.” There are wall decals in that room that were hard to put up.  Two walls were blank.  Upon the news of Joy’s pregnancy.  I decided one wall was to be a rainbow.  At 32 weeks, Hope started one hand print at a time (a color a week) to make that rainbow.  Joy presses her hand against each print.  It’s really going to hurt when the house gets sold.  It’s not on the market yet.

When I decided it was time to have a baby, I kept my eyes on yard sales sometimes.  My babies had a room at this house, I worked on it from the second I found out I was pregnant with Avery.  On the eve before our big trip to England (the belated honeymoon we never got & the last fling before we became parents.), I sit in there weeping.  The baby had multiple birth defects and we had no reason to believe who ever it was would survive.  My anger rose, I pushed all the furniture to the floor screaming no!  My husband was ready to cancel the trip, when I said, “look if the baby is to die, let’s show little one the world.”

I kneeled everywhere at Westminster Abbey begging for my child’s life.  I brought the baby a cross.  We were not of that religion.  This wonderful trip became anxious.  We waited for word from Boston.  Instead of laughing and having the time of our lives, we quietly cried.  I refused pictures of myself the entire pregnancy.  I hope someday, our family returns to England for a happy trip.

Avery saw the world in utero.  We found an expert in Maryland.  We flew down.  I was pregnant with Avery in New York.  Sadly, the week afterwards, Avery was born prematurely, she lived a day and died.  I was a girl of faith and spirituality.  The Pandora box of Pregnancy made me question everything.

Moving from yesterday to today, I kept storing baby items that Joy outgrew.  I see signs of Perimenopause in myself.   Yes, there is no way we could do it again.   All those years of chasing for a Rainbow, it happened.  I was planning to try a yard sale.  Every weekend, I found an excuse.  This weekend we are going to try to have one.  After Joy’s birth, I was asked if I wanted my tubes tied.  I declined. After all those years of trying, it felt like insult to have your tubes tied.  Our family works so hard to pay for her conception back.  I got pregnant with Hope after an infertility evaluation on my own. The babies who never came home had a few things here.  Some outfits, we are keeping incase of grandchildren.  A few years ago, we took the final genetic screening.  It is supposedly, just our generation.  Hope will be fine. So, here’s too hoping.  (Remember Joy was conceived embryo donation.  There is no effect.)  I am skeptical.  It wasn’t suppose to happen after the first lost.

I hope to live to see grandchildren, if my children choose to.  It has been tough to hold each outfit and remember.  Sunday will be a little tough.  When the house is ever sold, I will need consoling.  It was in this house all the babies were suppose to come home to.   After all those years, I am saying good bye.  Hopefully, I will be able to live to see grandchildren.  I have always promised my children if for any reason they end up struggling with infertility, I would be there.  Isn’t strange due to the weather, this yard sale will be occurring on Pregnancy Loss Awareness Day.

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Like The Song: Summer Has Been Cruel

How does one pick up the pieces after you give your own spouse an ultimatum to get into alcohol treatment or leave the house?  I know I haven’t written in forever.  It’s been an act of congress for me to go to the bathroom over the pass few weeks never mind blogging.  I wanted to stop remodeling and put the house back together right after he started substance abuse treatment.  Our house was in pieces.  He wanted to continue.  With tears in my eyes, I packed the cabinets.

Fast forward to the family vacation about 3 weeks ago.  We just finished painting the cabinets.  Everything is in boxes.  This is your idea of vacation?  The cabinets look awesome in beige.  I had a real rotten day right before vacation.  Sleep has been bare minimal prior to vacation.  I ended up sick with a bladder infection because I work two part time jobs around my children’s schedules, there is no sick time or vacation time.  I have spent most of my summer fearing what to financially do as a single parent.  He went into treatment.  Our toddler is a very active girl.  Put her down for one second and it is one second too long.  I am forever joking she is a toddler ninja master.  I think my reflexes have improved since she started walking.  My oldest was a thoughtful child.  You could leave her in her room for hours with only a book.  This one, I had to become a ninja master quick.  I need to predict her quick before toddler finds trouble.

My last work day before vacation was awful.  The original babysitter took the girls to lunch.  I was hoping for a hamburger about a week.  She took them to a burger place.  I was left with their uneaten lunches.  All I thought was that 20 minutes to pack lunches which could have been used for more sleep or a shower.  Of course the girls didn’t want burgers.  I went to a convent store, which served burgers and sandwiches.  The guy behind the counter comes out to tell me that they are out of burgers.  Our toddler is extremely fussy about food.  I brought her something.  She threw it around the car.  We went to one store to do quick clothing shopping for the girls birthday pictures.   I had to pick through summer clearance.  I had personalized shirts made for the girls.  I wasn’t finding anything that matched for my toddler Joy.  I was pushed against time.  I brought a dress even through I wanted something more.  We couldn’t go to another store.  The dog was waiting.

I get home survey the disaster zone and began to freak out because of course one of the personalized shirts is missing.  I did find it.  I knew the house was a complete disaster.  I literally offering to send my husband with the girls over the few days up North so I could stay home.  I see this isn’t going to be an easy clean up.  One job was threatening not to pay me for the week.  There are still all these little projects to do.  The house has to be perfect by a week.  A new babysitter is starting to care for them at our house.  My work schedule is changing for to accommodate my oldest going to middle school.  The other babysitter decided she wanted Mondays and Tuesdays off to spend time with her husband.  I have worked 6 days a week to pay her wages.  Isn’t love grand when you have it?  I have not been a twinkle in anyone’s eye for many years.  Fear of being a single parent has kept me up many nights.  He comes home from his groups sober and right to bed.  The emotional divorce continues.

Believe or not, I found the personalized shirt with Joy screaming in the background.  It occurred to me to just put the shirt over the dress, because that was the best match.  The other bottoms just didn’t work.  I get in the car picture morning.  He brought me earnings and apologizes.  I am in tears.  Okay maybe this will all work out.  We get the pictures done and grab a quick bite to eat.  The photographer tells me her infertility story no kids.  She is in dept and the mall is being torn down.  Time to put the kitchen back together.  This is when all the problems happen.

My mother was in a horrible car accident, when I was younger.  She was hit by a car and she never walked again.  It ended her life earlier due to medical problems.  She brought us what we needed at the time with her settlement money.  The only item, she brought was a antique piece of furniture called a dry sink from the 1800’s.  I noticed it was deteriorating.  During a small flood, the water almost reached it.  I begged my inlaws to take it.  They wouldn’t.  I live in one of the smallest houses in the state.  All these people with big houses crack me up with, “I don’t have the room.”  How come some how I find the room?  We got this idea to replace the microwave cart with the dry sink.  Dry sink have very fancy tops.  We brought this microwave shelf to hang our microwave.  We took measurements.  It was close.  We were running out of money.  I didn’t know my husband took some emergency money and our helpful friend was getting paid.  He came over to finish the counter top edges.  One still remains undone.  The house was already a disaster zone.  The space just got tighter.  My husband is in early recovery now.  So, I gave him Joy duty.  I gave him all errands after he went to the gym.  The bulk of the work was up to me.  We hadn’t touched the bathroom at this point.  The dry sink makes it so I have rearrange table chairs.  The microwave shelf didn’t work.  After trying to develop options, we end up putting the microwave on the counter.

I ended up with a cold.  I promised myself no late painting jobs.  I have a secret that I don’t share with my husband.   I was in individual therapy and some couples counseling after Addison died and we were consider our options to have another child.  I worked with the psychologist for three years.  I stopped going because I felt the crisis with our daughter’s still birth, my cancer treatment and my mother’s death was over.  I went to her, when my biological father died, my husband’s drinking picked up and he refused a hearing test.  She told me something that I have held a secret.  She thinks he may have high functioning autism.  I am not sure is fully true, because if you ever met my in-laws they are very verbally abusive.  The strange thing is, boy does he love her.  I was begging this woman for help because our marriage was falling apart.  I asked her to help me with his drinking and refusing a hearing test.  She said he didn’t have a drinking problem or hearing loss.  She said the biggest problem was neither one of us met each other’s needs anymore.  She told me if I really cared for him that I need to embrace his high functioning autism and deal with it.  I left in silent tears.  She gave him the biggest hug.    For the record, he failed his hearing test about a year later.  Here we are in alcohol treatment mode.  Damn, you must have missed something rather big there!

I got a cold and stayed up late.  I worked after Joy went to bed with very few hours sleep because he was in group to stop drinking. Here is Wednesday, the last night before we left for NH.  The house is still a disaster zone.  It’s getting better.  I am waiting for the fire department to fine me.  I start in on the bathroom.  Just paint the walls and closet this should be quick.  We had a brown medicine cabinet.  Things are financial tight.  I figure, I will just paint the medicine cabinet white.  We had this awesome surprise for my oldest.  There is a boat that serves ice cream she always wanted to go on.  I got her surprise tickets.  I busy packing, cleaning and finding birthday gifts.  I went to use the spray paint.  I am really sick with the cold.  This cloud of white paint covers the whole bathroom.  It’s everywhere.  I order the evacuation of the house.  I have an asthma attack.  Here I am scrubbing the paint off before it ruins everything.

We ran out of the house to drop off the ferret at the caretaker’s house.  We did drive through and it took so long.  I told my husband to drive off.  We had nothing to eat.  We drop the ferret off.  I am joyfully teasing Hope about her surprise.  I messed up the time of the boat.  It was for 7 not 7:30.  She is crying hard.  The cruise is telling me that they would try to sell the tickets for me to get my money back.  I was so hurt.  Here I am barely speaking to them because I am congested.  They sold half the tickets.  We had to rebuy tickets for Labor weekend.  I single handedly screwed up the surprise.  The bathroom is still to be painted.  I pleaded again to stay home and let the family go on vacation.  I decided I am going to finish this by staying up all night.  We had problems with the paint.  I ran out of paint at 5AM.  I want my mother at this point.  They all woke up.  It was time to go. I am trying to finish the bathroom closet with ceiling paint.   I barely slept in the car.  My daughter went into these caves in NH.  My toddler decides she is going to walk all 1,000 steps on her own.  Remember, I have a lot of neurological damage in my left arm.  I am struggling to hold her from committing suicide by falling into a crave.  The hotel was awful.  It smelled of pot.  Hope decided to stay up all night talking to me.  My husband left his bag at home.  We had to rush to buy emergency clothing.  I am trying to explain early recovery to my husband, because I have done substance abuse counseling for years.  He is blowing up at me left and right.  All I am thinking is I have to work Saturday and Sunday.  The new babysitter starts Monday.

We had one good day.  Saturday, I finally got an antique photo of the family.  This was very important to me.  Before chemo, we had an antique photo of the family.  I wanted another to include Joy.  My daughter was upset because we never got to go to the mountain she wanted.  The ride home was a drive against the clock, because I had to work.  I went to work.  I came home and started cleaning.  I got a few hours of sleep.  Sunday, I went to work exhausted.  My husband finished painting.  The new babysitter is not responding to answer my texts or calls.  Sunday, I told my husband to make alternate arrangements.  I was up until 3AM the house was done.  7:30 rolled around.  No babysitter.  For the first time in my life, my in-laws agreed to help.  I told the woman she was fired.  I was suppose to train for the new position.  The trainer ended up late and it all worked out.  I texted my original babysitter about the situation.  She treated me as if I dropped the ball somehow.  I was scheduled for job two at night.  I called them crying telling them that I needed to leave work early.  I was so tired that I got lost in my own city.  What a way to start a new position!  By the end of the day, I had three possible babysitters.

I worked on the birthday party for the rest of the week.  This year, we had a joint party/open house.  Again, I invited everyone to bring them back into our lives.  Somehow, we got alienated between the baby death and my breast cancer.  I have been trying to draw our friends back.  All week, I heard all the excuses.  I survived breast cancer.  I know what my priorities are.  Hope wanted to go to this event and hour away.  I know it was birthday hostess suicide.  Life is about enjoying those girls that I worked so hard for.  It was going to rain anyways.  We couldn’t set up for the party.  He had his last group.  There were 8 baskets of laundry to be folded.  He stay for half of the group and came home to help.  I ran into traffic.  We drove around crazy trying to put everything together.  He comes home and says, “I am going to bed.”

Hope made slime in the basement and dropped corn starch everywhere.  The water slide was bigger than our yard.  My husband tried to set it up.  Hope left the chairs around it.  The moment it went on, it drenched all the chairs.  I am trying to dry them up.  I am yelling this isn’t set up right.  I haven’t been able to shower and I have an odor.  I am screaming for her to clean it up.  I get 2 minutes for a shower.  I am literally throwing this together within the last 15 minutes.  The guests come.  I usually like the food out before hand.  At this point, it is what it is.  Fifteen minutes into the party, I get the water slide to work.

I say to him, can you clean up?  I am emotionally tired at this point.  Only a handful came.  I am still getting excuse texts even after the party.  He puts three things in the refrig and tells me, “I am going to the gym.” I worked the next day.  A neighbor is taking the kids for the next few weeks until school starts.  She couldn’t take them that Monday, so I hired a different babysitter to fill in, so my neighbor could get a mammogram.  I go to work Sunday.  I end up cleaning up Sunday night.

I am emotionally drained.  The babysitter no showing the week caused me to cancel my individual therapy appointment to embrace who my husband is.  I think I really need to get back on track with my life.  If you survived child loss, cancer and infertility, you can understand when I say life is short.  For years, I have been making everything perfect.  I am done with the babysitters.  I am in the middle of starting a new position.  One job did not pay me for this vacation.  I could have used my emergency savings, but I didn’t because I don’t know what will happen.  Am I going to end up a single parent.  I have having problems with both jobs.  I saw an official description of my job and I am listed as an unlicensed professional.  I am wondering if they are not paying me the right wage on purpose.  The other job wants more.  I haven’t had more to give myself a shower never mind more time at a job.  Then, it looks like we are owing taxes again.  Actually, my depression has been better, because I quit whining and went out and made new friends.  Those friend have been about the only ones to make sure I am okay.  Several times, I have been almost ready to cut them off.  My husband appears in-decisive about us moving.  The truth is for me to work longer hours, my oldest needs to live in the same town she goes to school in.

I told my husband to get a loan and finish the house with professionals. I am done at this point.   I work so hard for those girls.  My action plan for myself is the following: 1. sleep, 2. shower, 3. go to the bathroom as needed, 4. go back to running & 5. get involved with the 12 step program.  As for the jobs, for $30,000 a year, is it worth it?  The job that may be underpaying me is going to told to other resolve my issue with my job title or I am not available.  The other job needed my office space on the weekdays, which forced me to work Saturdays.  This is an issue due to activities with my kids.  I may have to start looking to get rid of both jobs.  This is going to hurt, because one I have worked since my daughter was 3 months old.  I am important and I deserve better.  It’s time to start living again.  Isn’t that the point of survivorship?

PS-Hope did have a wonderful birthday in NH.  Friday is my new day off with my new schedule.  Joy had a wonderful birthday too!  She keeps singing happy birthday to herself.  We went to a fair today.  Summer is over.  I feel like I am ready for it to begin.

Frustrated

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

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

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

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

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

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

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

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

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.

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.

 

Disappointed, Stress, Overwhelmed & Grateful

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

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

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

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

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

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

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

 

 

February Is Rare Disease Month & Avery’s Birthday/Angelversy

My sweet first daughter Avery was born unexpectantly at 31 weeks due her rare disease in February.  I woke up Saturday, February 21st at 5AM to my water breaking.  Since we had been warned about the possibility of her preterm labor due to her birth defects, I had all my clothing always packed in the car (just in case.) I carried documents and medical records in that bag to explain her rare condition.  My sister had issues with preterm labor, so I knew what to do.  We only live about 2 blocks away from the local hospital.  Literally, we sprang into action.  When I was awake enough to understand I was not having an accident, we left the house.  We went to the local hospital first to try to stop the contractions.  I was given meds, loaded into an ambulance heading to the Boston hospital.    At first this was a regular transfer, the labor returned as the ambulance almost crossed the next town over.  That’s when the ambulance put it’s lights and sirens on.  It took a left on the main street.  We went on the highway we went.   When I on that highway and an ambulance drives by in a certain area, I burst into tears sometimes.  Avery was born by emergency C-section in Boston at 9:04AM on February 21st, 2004.  It was not your normal delivery.  There were no cries of a newborn in her delivery room.  My delivery nurse was  a saint.  She kept updating me on if Avery had a heart beat or not.  Then I saw the team wheeling her to the NICU.  They stopped for a brief second and let me kiss her head.  I remember trying to see my beautiful baby that I gave birth to.  There wasn’t time to study her face.  Off they went.

Almost 13 years later now, since she was born and died.  She made me a mom.  For 33 1/2 hours, she was with us.  Her eyes only open, when we spoke.  It broke my heart, when I asked them to stop CPR.  My husband and I collapse hands we held her in our arms until she died.  I had never witness a person die before.  Months after her death, I was haunted by her loss.  A mother with no baby to care for.  A broken heart and empty arms/uterus, my mind was haunted by the memories of that day.

For years, I would not drive to that side of town, where the labor returned and the ambulance put it’s lights on.  Hope, our rainbow daughter started daycare in the area.  It become a daily event.  Her birthday was the first time I remarked the city I move to as home.  Home prior to this event was the city I grew up in.  When the ambulance doors closed, I realized I am leaving home.

Rare Disease Day is on February 28th or February 29th if it is leap year.  Since learning of the first one after our second child Addison died of the same disease, every year my daughter Hope and I have Rare Disease Awareness Day projects.  This year, we are trying to do a project with other parents who lost their child to the same rare disease.  Sometimes, we go to a butterfly museum to mark her anniversaries.  Almost always, it feels like the butterflies follow us more.  This year, I join a parenting after loss play group.  The plan is we are going with them in early March to the butterfly museum.  This year, she would have been a teenager officially.

I renew my promise to God.  I asked him to help me fight breast cancer.  I promised him and my daughters that I would forever advocate for rare diseases.  My hope is before I die to hear that Avery and Addison’s life would be different if they were born in the future.  Avery was the only burnette of my children.  Both my living daughters were born with very blonde hair.  Both Hope and Joy have been referred as the Gerber babies.  Strange enough we were grieving the Gerber Baby, when I was pregnant with Avery.   This is a term parents, who have had children with birth defects use to describe their feelings.  This year, I was going to enter Joy’s picture into a contest, unfortunately due to computer problems, I couldn’t.  Every year, I remember what it is like to have a child with multiple birth defects.  Hear me Avery and Addison, your mother has not forgotten!

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.