Practicing A Delayed Sense Of Gratitude In The Pandemic

The last entry is about my oldest daughter’s birthday. It went from the new normal speed to new crisis after new crisis speed. I am literally sitting down for a minute. Not all the crisis situations were BAD. One was a life expected transition.

We decided to invest in a shed last January long before the Pandemic. Our house is a smaller house. For years now, I have been avoiding the remodel and add a second floor. The pandemic pushed our house. When Joy was born, I painted the cellar and we made a family space in the basement. It’s kind of a second living room, my office entertainment area and play area. The second half has been storage. All summer, I sorted out stuff.

I feel sad and guilty. I never mentioned my youngest’s birthday. A lot of dust has been floating around due to the cleaning in the basement and shed. This summer, we learned to kayak and we went kayaking a bit locally in local lakes. Neither of our daughters have birthday parties. We usually do something small to avoid having multiple verbal abusive family members at the house and the whole drama at the birthday screen. Usually, we do something the day of each child’s birthday. This year, I worked for both birthdays. We had decided to do a vacation in July. We didn’t go away. We did a few day trips for both girls.

My oldest ran a temperature and she was coughing and sneezing. I struggled all summer long with my asthma. My oldest got scared to the point of demanding to talk to a doctor. This whole event kind of impacted my youngest’s birthday. It also rekindled the sadness of having a loving extended family. I have been reading on narcissism (self centeredness & emotional abusive relationships). I keep reading. This narcissism in relationships finally makes sense to me.

My youngest was suppose to have a birthday at daycare. We had to change it from this fun bus event to a personalized greeting message from her favorite aquarium due to the pandemic. I brought the kids prewrapped packages of muffins. We made a ring out of painter’s tape with the packages of muffins and decorated with dolphins. They were going to celebrate her birthday a week early before the daycare went on vacation. The doctor gave the oldest a Covid test. I agreed it needed to be ruled out. I pointed out that I thought it was a sinus infection. She agreed with that.

My youngest was MAD that she couldn’t go to daycare. She peeled paint off my kitchen. She hit and kicked me. My oldest and I just fought. The youngest broke a major board in my futon. She destroyed all the eggs. We had no frosting. She was pulling items out of the cabinets and refrigerator. I had ordered groceries for delivery. The store was telling me that I needed to order $35 more to qualify for delivery. It took 4 days of until the negative test came back. We were able to take her out to eat and we had a good day for her birthday. Her behavior just continued. I ended up buying locks for the refrigerator and cabinets.

Then, Labor Day weekend we went kayaking and out with another friend. We went to my birth city and we had the best time ever. I called my aunt since it was the death anniversary of her sister. She was grandiose. She hurt my feelings a bit. I found some lint and cat waste. We went though a lot of electrical problems during the lock down. Apparently the hose got disconnected. The cats decided to use it since they electrical litterbox was out of service. I cleaned it up without a mask. I woke up with a sinus infection and bad laryngitis. It did end. I never had a fever or a cough. Guess what, my husband tells me he is drinking again. I caught him and smelled off his breath.

Two weeks later than usual, my oldest started her sophomore year of high school. She is in advance and honor classes. Literally, one day later, I walked that little girl that I had struggle for 8 years to get pregnant with. I lead to her kindergarten teacher and left with tears. Ready, the next day after the first day of kindergarten, I had my mammogram. I was 18 months due.

At first, I was told they needed more pictures. Then, the doctor walked in. I just remember how neither family could be available to help with child care for my breast cancer treatment. It was quite a battle for my in-laws who never care for my children to watch my oldest daughter for my C-section to have my youngest. She told me to do it the old fashion way without my husband. I cried for the past week. My oldest told me how the cancer impacted her life as a kindergartener. I didn’t have the strength to fight my birth family and my in-laws for help. I barely slept. I asked for help this time. I wasn’t doing it again. I had a biopsy on Wednesday. Friday the good news came in! My biopsy was normal. The oldest give me a hug in between remote classes.

My asthma is bothering me. The cellar is 80% done. The shed is organized. The kids rooms are organized. I have been cautious about finishing the basement due to my asthma and allergies. I got mad at both families and I kind of blew up. I get tired of being the “invisible child, who never does anything right.” I have been laying low from both sides. It just been a lot. I am grateful for both girls, a house/home and that I am not in active cancer treatment. I am emotional tired.

16 Candles For Rare Disease Day This Year!

Why have I not just forgotten what has happened to us?  There is a cemetery with our children’s names 20 minutes away from the house.  Just forget.  You have two surviving children.    When I found out there was a day called Rare Disease Day,  my soul soared.  One day!  Just one day! Just one day, I can say their names out loud.   I cried for hours…  I had tears of grief and joy.

My body, my soul and my mind will never forget any of the 5 babies that I lost.  I was born and raised.  Children just happened.  As the song goes, “first comes love, then comes marriage, then comes the baby carriage.” I can remember the first time I ran into the concept of infertility.  My mother told me an aunt adopted my cousins.  For minutes, I asked who would give up their kids.  Why couldn’t Aunt have children?  Is she sad?

Moving forward, I expected to fall in love, get married and then this mysterious baby carriage would show up.  I never expected to break medical history.  We are the first documented case in the world.  Many family and friends are not apart of our lives.  In the case of my family not being involved, honestly Avery, our first daughter’s death was a good excuse.  There are many reasons a family ends up unhealthy.   There are other issues.  I am not better than them.  I pray someday they become whole.   I can no longer function as the black sheep, because I discovered through the beauty of the 12 step program that I am a beautiful and flawed being.  As my former Alateen sponsor would say, “I am a diamond.  Every diamond has flaws.  That’s what makes me real!”  I recently celebrated 2 year anniversary in returning to Co-Dependents Anonymous.

Avery, our first daughter, was suppose to be born in April of 2004.  My body went into preterm labor in February.   I suffered infertility either pregnancy loss or infertility. At various times in my life my grief made me feel like my morgue.  I know now that is not true.   Today, I got in touch with some of the grief.  She will be 16 on February 21st.  I should be cracking jokes about driving lessons and thinking about driving permits.  Her birthday is always February vacation here.  All the good birthday parties we could have had.  I prefer to work through February vacation and take April vacation instead.  My arms are empty.  I am a rare disease mom with no child to care for.  The grief has changed over the years.  It is like loosing an ability to see, walk or hear.  I have adjusted.  It doesn’t mean the grief is gone.

This month, we plan to stay local for a Rare Disease Day event.  We have plans to celebrate our family by going away to a water park.  Her anniversary has become a day of celebration and remembering.  I fill my life with hope, joy and I grieve as needed.  When the second daughter Addison died the same rare disease Campomelic Dysplasia, I ended up with common breast cancer at a young age.  I struggled for some time if I should continue in breast cancer treatment.  I had this dream where I was basically spoken to by my grandmother to not give up.  I choose to fight because I had 5 year old daughter named Hope at the time.  Giving up was not fair to her or my husband.  The path was difficult.  My mother died all within 10 months of my life.  For years later, I found the grief of my losses.  I felt I was a atheist.  I suffered due to my trauma of my losses.  Frequently, I worried I would loose my only surviving daughter.  When crisis happens, there are two choices.

I would describe myself as agnostic now.  I have had dreams of Avery.  She hasn’t appeared in years.  She usually takes the form of Hope.  (Hope has dirty blonde hair.) When I speak, Avery’s hair turns brown like mine.  I do believe in something.  I can’t explain it.  I promised the universe to remain involved with rare disease.  I promised my children Avery and Addison.  A mother never forgets her promises.  I asked for strength to survive common breast cancer treatment. This year, I will be celebrating 10 years as a young common breast cancer survivor.

I would have like to have gone to the Washington DC events.  My other surviving daughter is 4.  By staying locally, she can stay at her home daycare.  We can do so many amazing treatments in the medical field.  It is not right to not make medical advancement because someone suffers a rare disease.  Everyone deserves a chance.  This coming from your common young breast cancer survivor!  Happy sweet 16 to my beautiful angel Avery!  I love my angel children and surviving children!

Remembering Mary: A Mentor

For many years, I had this good friend at church named Mary.  When Addison, my daughter died, she reached out to me.  Mary was in her late eighties.  She had died due to cancer.  She suffered from infertility, infant loss, being diagnosis with cancer all her life and witnessing the death of one adult child/grandchild die one after another.

Mary was the head cheer leader when I left for the West Coast seeking embryo donation. The result was my daughter Joy was conceived by embryo donation.   She was quite a pillar of strength.  I made diner for her over the summer.  We spoke so much about loss.  I was at her memorial service.  There was so much more I didn’t know.  She had a daycare in the 70’s.  She took all children in difference of ability.

The church was so packed.  I had to drive around the place several times to find a parking spot.  I am local.  I navigated and found the hidden one!   What was amazing is…  She died the day I was at a holistic fair.  My attention went to a bereavement book.  I gave this book to her surviving husband.  I have difficulty going to church since Joy was diagnosis with hyperactivity and sensory disorder.  I woke up on Veteran’s Day with a you must go to church today attitude.  I did not know before hand.  I lite candles for the girls a celebration of their accomplishments.  I asked for help for Joy.  Next person talked about her death.  I couldn’t breath.  I watched Hope march in a parade.  My heart was broken.  It felt like hours.  My eyes begging to cry.  I was fighting it so hard.

She was also a cancer survivor mentor.  She was only in her twenties, when she was diagnosis cancer.  Back in those days…  It was chemo or radiation…  Mary was a part of a study trying both chemo and radiation.

Her pregnancy loss stories are the bases for why we are not separated from our children.  She lost two or three infants.  I am not sure.  The children was whisk away.  It’s not clear what happened.  Heartbreaking is one child was born healthy.  The child was given penicillin upon birth.  The doctor overlook Mary had a penicillin allergy.  The child died.

Why she is important to me?  It’s going on 15 years, that Avery was born and died.  Today’s CODA reading was being truthful and Santa Claus.  My three years old found Avery’s picture.  I was asked why couldn’t Avery breath.  I said to her.  I promise to tell you when you are older.  I don’t know how to explain #CampomelicDysplasia to my three years old.  How do I explain we have normal SOX 9 genes and Avery and Addison didn’t?  I remember taking building blocks to explain to my oldest Hope what a gene was.  She was five.

Mary had an enormous strength.  Often, I used the affirmation I am a rare beautiful mother.  The death of Avery and Addison effect my sense of worth.  Both children died horrible deaths due to their bell shape lungs.  My lungs are normal.  So isn’t Joy’s and Hope’s.  She has often criticized for not letting them be forgotten.  Mary was not isolated.  She grieved publicly.  For me, it’s about ending my isolation.  I may have every parking lot full like Mary at a ripe old age.  I am afraid that isn’t today.  I need to see it’s okay to grieve and live.

I often joke with my kids.  It’s not Merry Christmas.  My real name is Mary Ellen.  I joke like I am Santa, “Mary Ellen!” It’s Christmas without Mary.  Mary Christmas Mary.  She often told me, “I love you!”  Mary, I love you!  

These Past Few Months…

Writing allows my sanity to flow.  My toddler daughter reminds me how much zest for life we have as small children.  I see pictures of me  at twenty-five year old in a wedding grown.  I believed.  My innocence was taken away, when I learned the baby I was carrying was to die from an awful disease.  My first born had a bell shaped rib cage that refused to let her lungs expand.  I watched her die.  Then, it was the words of others that confused me.  I didn’t care about the social issues.  It was what I felt I needed to do for her and our family.  Then, when a miracle occurred and second one was born, the rug was torn from under the feet of my soul.  I chose bad caregivers with their own agenda to care for her without knowing.  For months, I cried at the level of betrayal.  I learned from that day forward to trust my own gut instinct.  The innocence of a picture of me at twenty-five year old in wedding gown was torn.

When I wanted another baby, I held the silence of the losses.  One miscarriage at six weeks, 18 weeks, 13 weeks and 21 weeks.  I silenced my voice.  Then the breast cancer came and my mother died.  Quiet Ellen!  Can’t you be grateful for the one you have?  I swallowed my pain and disconnected from the world.  I am doing this!  It took 8 years.  Proof, I flew out to the West Coast a few times instant miracle. Joy, my youngest,  was born.  Please don’t take me ungrateful.

The house was covered in black mold, a newborn’s parent worst nightmare. I have gone crazy scrubbing walls at night and getting a few hours to take care of Joy.  This war with the MOLD is always going on.  Somedays, I find it ironic like the negativity in my mind.  Somehow, I got disconnected from the one person I should have been connected with.  He kept drinking.  When I looked into her eyes, I heard my mother say, “do the best you can with what you have.” The mold has mostly fell into silence except when I notice it got a another piece of Joy’s clothing.  The war continues.  Finally, I brought the most expensive dehumidifier ever after a long battle about buying it.  My oldest has migraines now.   It seems puberty related. This morning, I notice, yep another cute shirt gone due to mold. Writing saves my life.

I am trying to reconnect with others. I don’t know if everyone will ever come back who were lost in my quest to have another baby.

As for the mold, I started reaching out to a family friend for help in the construction business.  That exclusive all expensive dehumidifier wouldn’t run continuously for the dumbest reason ever.  The company coils the drain hose.  I order another one.  Same thing again.  The family friend picks up because the company has coiled the drain hose, it’s causing kinks.  He drills a hole in the wood board holding the dehumidifier and puts a cooper tube in to hold the hose straight.  It WORKS!  Meanwhile, I struggling to find the time to load the old one in my car to return it.

I found myself struggling with the schedule of two jobs.  I have to pick up the kids by 3PM.  My daughter was picked to go to school in another town.  Middle school has no afterschool.  There is no public transportation.  I have to stop working and get the kids.  Then, I wait home until 6PM.  I am out to another job.  I noticed my toddler seems extremely impulsive.  She doesn’t like to be alone.  She hates shoes and gloves.  She bolts.  She has almost ran into the street several times.  She won’t eat bread.  It takes a half an hour to dress her in the morning, because she fights with you so much.  I do love her very much.  I very concerned about her behavior.  She is hitting every child at daycare.  Right before Christmas, she ran from the daycare teacher at the library and almost ran into the parking lot.

I started blaming myself because I haven’t had the same amount of time for her as the first.  When I last specialized in children, I learned about sensory disorders.   I don’t know much about them.   I am so concerned about her running into her death because she was hit by a car.  Her behavior is beyond the average toddler.  I made a decision to have Early Intervention look at her because she is like a space ship on continuous warp speed.  I am not worried about autism because that kid loves people.

In the past few months, I have been sleeping right.  I can’t seem to sleep after working at night.  One job is constantly under staff.  I have left at midnight due to it a few times.  Then, I struggle to get up to fight with the toddler to get dress.  My oldest is having anxiety about being late for school.  I have missed many showers.  I tried everything with my schedule.  When I was asked to take on an additional placement at my main job, I agreed as long as I can work additional hours on Sunday.   How does a toddler almost get out to the parking lot of a library? I started looking at other daycares.  All the childcare providers that my oldest had are retiring.  I feel like I am starting over.  Somedays, I very overwhelmed by child care for Joy.  She is in a family daycare that runs on the school schedule.  I started having chest pains last October.  I can’t get to the doctors because I have to wait for my husband to come home.  When Joy comes, I constantly correcting her.  It’s suicide watch 24/7.  My husband actually brunt his vacation days up so I get my trainings done for my license renewal.  I never wait until last second.  Two jobs and a mold war is all I am going to say.  I love her so much.  At 10AM on my days off, it feels like midnight.

I went for a stress test.  I warned the person that I wasn’t going to make my 3PM pick up time a week in advanced.  I am telling her I need a stress test.  So the morning of, she says see you at 3PM.  I told her again.  The daycare closes at 3:30, but she makes us tell her an exact pick up time.  I had to wait two weeks due to trainings, her jury duty and early release days for my oldest.  The test was at 2:15PM.  It was 2:35.  I said something.  The woman looks at me and says, “let’s reschedule it.”  It’s an act of congress for everything.  I am lucky to shower in the morning.  I said look I want to know the results.  They did the condense version.  I had an asthma attack.  You would think all that running after Joy would count as working out.  I bolted from the appointment.  I ran down to the daycare.  Her dog escapes and I am trying so hard to help. (The dog was saved.)   She bolts in the car with one of her kids and leaves.  She talking about Christmas shopping.  I ran out of time.  Christmas Eve, I discovered I ran out of wrapping paper.

I had to do extra hours at both jobs to cover Christmas, New Year’s and two days off. I travel for a living.  It’s a real struggle to make sure I am there at 3 every day.  I have no vacation time because I am part time.  I have to train weekly for a month to submit the paperwork to get my professional license.  We have 2 years to get the trainings done.  I had to cancel or not go due to all the problems at home.  (Side story, one training I was doing on my own lost accreditation.  I had to scramble to find new ones fast.) It was done.  It’s not my style.

Anyways, the stress test was normal because I was never contacted about problems.  I got a letter in the mail my cholesterol is normal first time in 7 years.  It could mean, I am experiencing scar tissue pain from the breast cancer treatment or anxiety attacks.  This is my thoughts on it.

When I looked at that baby day one, I realized how much resentment I was carrying due to the lack of help from other family members with my oldest.  Constantly resenting it does NOTHING!  I promised myself and her that I wasn’t waiting for a caped figure to rescue me.  I am putting that cape on myself.  I am Ellen hear me roar!

I brought the woman at daycare a gift.  She was obvious that she was upset there was no holiday bonus. Of course she is closed Christmas break.  We saved a lot of money switching daycare to her place.  So, I had it.  I found something that takes the pressure off me a lot.  I found a drop in daycare center!  You buy hours and schedule days. I also toured another daycare.  Joy was not prompted.  She sat down in every class and participated.  I am pretty sure she has an impulse problem.  She is blowing out of her dance class.  Her behavior is like the Tasmanian Devil.  Listen, my gut says something is wrong.  I am going to do the right thing here.  Maybe Early Intervention will tell me that I am crazy.  If she needs help, let’s start now before she flunks kindergarten.  If she needs nothing, I have peace of mind.  I am not allowed to practice my profession on my own kids.  I see some concerns.  I don’t think sitting around and wait another year will help.

I feared her return to daycare.  It was an explosion on my part.  I don’t do well with repressed anger.   The night before for eight hours to make money from taking days off.  I worked in a 50 degrees office with work for 3 people.  I apologized.  The women at daycare disagrees with me.  She thinks it’s all behavioral.  You know what there is nothing wrong with asking for help.  I lost two babies due to rare disease.  I flew in my first pregnancy to Maryland to get a second opinion.  Who am I not to ask the question?  We hired the drop in daycare. The pressure is off a little about childcare.  I need to take care of myself.

It really hurt when I went to that IVF clinic chat room and I was put on the spot.  Later, I did talk to the admin person.  It was the other admin person who did that.  I just told her I didn’t think it was the right time for us to interact with them.  I am never going back.  Listen, I fight addiction that is in recovery at home, work two jobs and I try my best.  I am also concerned because Joy’s red blood cells are small.  Her iron levels are normal. It was brought to my attention because the doctor has to worn you about everything that there is a slight possibility she could be the carrier of rare blood disease, which doesn’t effect her health, but may effect her when she goes to have children.  It could just be do to her anemia.  Let’s stop right there.  Our family broke medical history of being the first documented carrier for a different rare disease.  I heard him say slight.  I stopped him and summarized our lives in 5 minutes.  Yes, I can do that in a matter of fact way.  Sadly, it’s our reality.  Some days, I can.  Some days, I can’t.   Joy is my daughter.  I refused to look the rare blood disease.  Of course, my husband says I already did.  Sorry, I am busy looking at daycares right now and getting Early Intervention in.  I am going to keep faith again that isn’t what it seems.  I am crawling with anxiety.  Joy was conceived through embryo donation.  If her cells do not improve, I am feeling a duty to warn BIG TIME.  I did not share this with that group.  Because we don’t know.  Maybe my innocence was destroyed but why panic everyone?  It can’t happen to us…  AGAIN?  If this is the case, I will follow it up and take steps to warn the professionals.   I am not sitting on that.

I also did not feel ready to learn if Joy had genetic donor siblings.  I am not hiding the information from her.  It may someday put my relationship and her sister’s relationship in stress with her.  I don’t tell everyone about donor conception because I feel that is Joy’s choice long term to decide if she wants to disclose the information.  Look what happens just choosing to make decisions that our best for my family.  I have seen the dark side of medical treatment.

As for my oldest and her migraines, I am working hard on diets and regular routines. I am in short the evil mother to a certain preteen.  She had a doctor appointment after the blinding migraine.  She needs to see an eye doctor incase there is damage.  She already had an appointment due to the school mis-documenting she wears glasses and she flunked her eye exam.  We will keep it.

My resolution?  I lived two years sleep deprived.  I miss showers greatly.   I am trying to escape a violent city.  I am trying to take better care of myself.  I need to attend Co-dependents Anonymous more.  It seems to work better than wondering if my therapist knows someone I professional know.  I tried therapy and learned she knew the doctor I worked for.  I never went back.

We have been living a crazy life to fight the mold.  Hopefully, by me not working nights, I can monitor bed times.  Maybe my menstrual cycles will turn normal.  I bleed heavy.  They last for 20 days.  Gee, do you think that impacts my mood?  I gave up coffee.  I tried to quit smoking.  I need to sleep more regularly.  Sleep deprivation is like being drunk from what I am reading.  I don’t know what this year will bring.  Hopefully, we can gut the bathroom be done with the MOLD and the other dark stuff that taunt our lives.

Forget the caped figure!  I am saving myself!  I am putting my own cape on. I need peace with the person in my life.  I do love him.  He had a sore throat and I went crazy looking for a cough drop.  Somehow, I need to accept what is or figure out what to do.  I am not 100% innocent of being a part of the problem.  I need an attitude adjustment too.   of As for my career path, I need to figure a way to make a bigger income.  About $30,000, doesn’t cover daycare.  I can’t be working 6 days straight.  It was a tough decision because neither place was a prime choice.  I chose the one with more money.   For now, I told my very long term job that I will stop working every week regularly.  I am hoping a regular sleep schedule will decrease the stress.  I hope Hope and Joy’s life improves.  My New Year’s Resolution is to keep working on healthy choices for my daughters and I.

 

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.

Mom Is In Pieces: Time To Put My Universe Back Together

I just paid for something that I against my own action.  In the middle of this huge personal crisis, I finally got time to talk out my own feelings with a friend on the phone the same week hubby got the ultimatum.  My period just came.  Joy was sick with a stomach bug and fever.  I had fever seizures, when I was growing up.  Avery, my daughter we lost a day after birth, was suspected to have seizures before her death.  I drove through a yellow light not red.  It had just turned yellow.

Not that I justify what I did.  I suffer from #Menorrhagia.  It’s been 2 years now.  The light turned yellow.  I got that dripping sensation.  I pulled through it.  Down the street, I was pulled over by the police and ticketed.  Just another thing that week…  It was not emotional enough to give your husband the ultimatum about alcohol treatment.  I requested a hearing.  The notice went to the PO Box.  It never came because the zip code was one digit off.  I finally am doing things like go to the bathroom, when your bladder says to go.  I ended up with a second bladder infection within a month due to not drinking enough or taking my medication correctly.

I finally got the call the DMV.  Friends were telling me not to worry because court could take a few months.  I never had a ticket before.  So, I called the week of after Labor Day.  I was pissed (which I never use the word on this blog.)  I should have been in court the day before.  I sent my husband multiple times to the PO Box.  No notice.

I am getting tired of the multiple events happening in life.  The day before the first day of school.  The UTI was hurting so bad.  I had to stop multiple times for the bathroom.  My husband worked from home because the new babysitter couldn’t work that day due to college.  I just started a new position within my agency.  I was late for work.  My oldest rainbow wanted a haircut before returning to school.  I am very new to working in a nursing home.  I have no clue.  I am not new to my field.  I am one of the veterans that made it.  (I am finding benefit to getting old and being middle aged.) We have new contracts and I am trying very hard.  I was running late.  I got the oldest a haircut. My husband is doing well.  He has been alcohol free since the day before our anniversary.  He had his group the night afterwards.  I decided I am going to the doctor’s.  I went to the doctor’s.  Another UTI.  I drop the oldest at home. I get my meds and the last item on my daughter’s back to school list.   I got the dog from daycare.  Joy had an open house at her new daycare.  I am trying to throw together all the stuff for daycare.  I am telling him that I will eat my diner in the car.

We are rushing to the daycare.  I didn’t get a chance to look at my cell phone.  My favorite aunt called me three times.  “Maryellen, this is important.” I called her.  My mother was one of five girls.  Only two aunts were remaining.  My other aunt was found dead by her daughter due to natural causes.  I don’t have the tears anymore.  We pull up to the daycare.  My aunt is telling me just get the girls ready for school.  I did pull aside Joy’s new daycare teacher.  I just told her I was not well and I learned my aunt died 5 minutes earlier.  Aunt Eileen worked at Walmart until her death, because she could not afford retirement.  The fact she did not show for work is when the boss called her emergency contact (her daughter).  Our family has strong work values.  Strangely enough, I called my favorite Aunt before Labor Day, because we had an argument over the girls’ birthday party.  The thought crossed my head working in the nursing home, if she ever dies and we never talked again.

It was the Eve of the first day of school.  My oldest is now old enough to stay home by herself and she refused to go to the open house.  I did the best I could with the open house.  I braced to tell my oldest.  My favorite aunt was crying so hard.  She is the only one left.  Her children live in Florida and the hurricane was coming.

There is a miracle to this story.  Her son for years was waiting for a kidney transplant.  In the mist of all this death and chaos, the following week, a kidney was found for him.

So, the next day, I go to go to court to talk about the missed hearing.  My youngest fell asleep.  I said to my oldest, I will go tomorrow.  I promised my favorite aunt we would go and bring her lunch.  Of course, I picked the restaurant being remodeled.  We ran late, which is the family theme song.  I refused to not show up on my aunt.  At 3:30, we get to the court.  The clerk is pissed that it is Friday afternoon and we show up.  He has an adult melt down on me like a toddler.  I see my oldest sit down.  She is telling me to just pay the ticket so I won’t go to jail.  I am reassuring her that we don’t lock up people for getting their first tickets.  She is almost in tears.  This guy is so Narcissistic.  Now he is telling me he is going to be my savior and give me these magical numbers.  The short of this blog is.  I still don’t have this family and work balance down.

Hope is adjusting to middle school.  Apparently, when I gave her Dad the ultimatum and judged myself harshly for doing this in front of her, she has learned to stand up in school against the bullies.  Twice this year, the story end with, “I told the teacher.” I high five her every time.  Otherwise, she has been sobbing in public like a kindergartener whenever she is corrected.

Here I am found guilty because the notice failed to show.  Did the state send it?  Are they guilty for not sending it.  The clerk was rude.  He was saying things like, “so are you going to say it’s your baby’s fault.” I ended up hiring an internet lawyer.  So, wow what a change at the court house.  All of sudden, it was come in and we will just give you a new date.  Nothing needed to be filed.

I went to my first therapy session last week.  My youngest had a blood draw for her last lead test (lead tests are now drawn twice.)  I went to the post office and spoke with the manager to make him aware that I was found guilty because I never got the notice.  I went to the school to get my other daughter.  We were getting ready for a cancer event.  The doctor’s office called.  She was fine, except we got called back in because her blood tests didn’t look right.  That same night on the way back from the event, our passenger side tire blew out on the highway.  I drove my oldest home late that night.  I had to argue with the tow truck driver.

Again there is no affordable child care options here.  I worked 6 days to pay a babysitter this summer.   I work Saturdays and Sundays to keep the daycare cost down.  My poor toddler daughter.  I had an hour to catch the lab again.  I drove her back to the doctor’s office.  She cried even harder than before.  I hid my face and I was crying too.  I never made it to the court house.

Wednesday of last week was my aunt’s awake.  My husband couldn’t go due to needing to watch the baby.  My brother and sister were going to be there.  I hadn’t seen them since my mother’s burial.  My brother is an alcoholic.  My sister has anger management issues.  When my oldest was 6 months old, my siblings made my life miserable, by saying I was mental ill because I wouldn’t let my first daughter’s death go.  My oldest daughter was suppose to go with me.  I picked out a skirt and a shirt.  She got the time wrong on her dance class.  She comes out in these loud printed pants.  She didn’t pack the skirt or shirt.  I told her she couldn’t go.  She began to sob like a 5 year old child publically embarrassing me in front of her dance school.  I drove her to meet my husband at a restaurant.  I was going to hand off the baby to him.  He was upset we were late.  He walks in front of my car making faces.  I told him that I wasn’t going to eat with them.  I got back in the car.  I picked up a sandwich at a store.  I gave the woman a prepaid credit card with a $1 on it by accident.  I wanted to cry so hard.  I managed to get there.  No parking.  So, I walked.  I spoke to my cousins.  I watched my siblings for a bit.  Then, I slowly went over to them.  Neither of them have seen the youngest ever.  We talked and my brother turned cold.  He told me he need to talk to my cousins.  No hug.  Nothing.

I saw my cousin later.  I threw out the idea that all the cousins should get together sometime.  She told me, “people do have lives.” I am seeing after my favorite aunt dies, I will be separated from all my cousins and family.  I am done grieving this.  Don’t let the door hit you on the way out.

My oldest had a battery of  migraine tests today.  Yesterday, it was my last chance to go to court.  My youngest has low iron.  I have spent the week calling doctor offices.  Yesterday, after fighting this ticket hard.  I had 5 days left.  I just started a new position within my agency.  My oldest left the courthouse fearing my arrest.  Yesterday, I looked at that little girl.  Finally after all these weeks of trying to fight this one ticket.  I plead guilty and just paid it, because there is no childcare to help.   Last week, the agency for the first time ever, they didn’t pay me for Labor Day because I am part time.  I needed that money.

I feel like a dog chasing her tail.  I don’t want to say the summer was the worst, because the summer I had breast cancer treatment was the worst.  Every day, I feel disrespected.  I feel better not being home.  Thankfully, I have made some new friends.  Otherwise, I feel ignored.  I feel other mothers laughing at me.  They don’t get the alcoholism moved in.  I have been desperately trying to control that is not mine.  Somehow, I hold on to the hope that my personal joy will prevail and I will find an inner peace somehow.  I am reaching out beyond my home for help with this demon.  Yes, your honor.  I am guilty.  My kids need me right now.   I don’t have all this time to chase courts and ignorant clerks around.  I am pretty sure I have my third bladder infection.  I want the multiple crisis.  to end.   I need to work on self care.

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!

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.

Semitemental Value

Last night, my heart was cut into a million pieces.  I have come from a tough background.  Last night threw me over the edge.  My birth/marriage family has basically been emotional cold.  Since Joy’s birth, I have been trying to get to a state of acceptance, move on and rebuild.

The surgery went okay on Friday.  I don’t have too much information because the doctor came and I was out.  My husband was called so all I know is Polyps were found and removed.   I don’t know how many etc..  We had to leave at 5AM.  The girls fell asleep.  I woke up with a head cold.  So, I just went anyways.  I asked him to stay with me in case the hospital decided not to do the surgery.  I got a bunch of snappy answers.  My head clicked and I said forget this now.  Our former marriage therapist told me he may be some underlining issues that I need to understand.    I have not shared that back.  I am trying to accept and adjust.  He apologized and all.  I just brushed off.  Let the show go on, I will take care of myself!

I get to the waiting room.  It’s packed with people and their family.  I tried to bottle up my feelings of sadness.  When I had breast cancer, those feelings of isolation resurface.  My in-laws have my name, email address and number.  My well wishes went to his cell phone not mine this time.  Which brings me back to another matter.  I find in this electronic age, my own sister will dictate messages through my aunt.  I address this again.  Auntie, the woman is almost 50 years old, let her call me directly.  A few weeks ago, I called her directly because they was a shooting at a popular teen spot.  In the middle of the frenzy, we didn’t know if anyone was shot or killed.  I called to check on my nieces and nephew.  No one was killed thankfully during the incident just shots.

Maybe it was the combination of my first daughter’s birthday/death anniversary, the fact it was called a “D&C” and the fight I had, I cried hard in the waiting room.  I resented the procedure being called a D&C.  I had been through a combination of 3 D&E/D&C.   Emotions were raw.  I was in and out to the bathroom trying so hard to bottle it up.  It didn’t happen.  I squeezed out one last call to my daughter’s cell phone.  I learned the girls went home and fell asleep.  They pregnancy tested me.  I felt myself even through we are officially done daydreaming about conception.  Oh well, it didn’t happen.

Friday, no pain.  A string of messages perked me up.  It was odd to be home and child free.  Even the cold behaved, maybe I wasn’t really sick.  Saturday, the day was a mess.  My husband needs to manage Joy, our toddler.  I can’t pick her up right now.  Joy extends her arms.  I don’t know how much she does understand.  So, I tried to explain.  I sit down.  Joy go get a book. I will snuggle you and love you that way.  Joy is a persistent little person.  No, I want my mommy.

Saturday, raw anger was boiling.  I wanted to finish that movie about the angels of our rare disease for Rare Disease Day.  Hope practiced Twinkle Twinkle Little Star for weeks on her flute.  Her bedroom is a mess, because we are trying to paint it.  He is sick.  I am sick. Hope is not feeling well.  We went back and fourth trying to finish this movie.  I posted a rough draft up.  I was thanked by the one mother who submitted anything.  Hope made slime and covered the kitchen.  The cramps came and I found myself in a squat position with preteen upset with her failed slime project.  Thankfully, my purse is well stock.  I went to the basement room because I was ready to tear her apart.

Then, came this critique  about the movie from a friend about the music and text.  I was having serious cramps and my nose is burning.  So, I practice a type of coping skill, which is like putting the ball back in her court politely.  Okay, you have these ideas, so help me fix it.  I watched the wording.  Of course the answer was “I can’t do these things.”  She texted me with an apology.  For a month now, I have been trying to pull this off with little invested interest from the group.  Again, I watched how I said this, but this one hurt.  I have been there for years.  I sent her messages when she was pregnant with her baby who didn’t make it and during her subsequent pregnancy, which was a healthy girl.  I was heated.  I sent a message explaining these things.  I accepted her apology.  You know she was one of those messages after the surgery.  So, we are good today.  She is still my friend.  All fixed.  It was a very thin line because I wanted to loose my cool.  The answer is we are all living beings.  To use old 12 step wisdom, I was a proud member of Ala-Anon for many years.  I am grew up into a substance abuse counselor.  “It’s about progress, not perfection.” The more I live. The more I understand, you need to be flexible in life.  Perfection is something for TV show.   In the real world those perfect plans are not always realistic.

Next year, just one movie for Avery and Addison.  (Period the end.)  I am done with my co-dependent slip.  I am feeling better today.  I hope we finish painting Hope’s room.  Funny enough, she wanted this different color.  I braced for it, because the room was originally painted for Avery’s nursery.  It ended up, it’s the same color.  It was a string of communication errors.  One could say it was like the angel Avery just said no to Hope’s color choice.  My husband has hearing loss.  I am still trying to adjust.  He swears I told him to buy the paint last week.  What I really said was for Hope to think about it.  He just saw something circle and brought it.  Hope is saying it’s okay.  It may be a few years before the house is sold. Let’s end it with, it’s about progress not perfection!

 

 

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.