Category Archives: #secondary infertility

Gratitude For My M.O.M: All I Learned My Babies Taught Me

Mother’s Day is tough.  Many have lost children.  Some face infertility. Others have lost their mothers.   I am very lucky to have my children.  I have been pregnant seven times in my life.  I have two living girls.  In my twenties, I studied hard and worked hard to get a career.  Nothing in life prepare me for what was ahead.

In 2010, we learned we were the first documented case in the world for carrying a rare disease.  Nothing in the universe prepared me to hold my first born child, then end life support the next day.  I had never watched a human die before.  Months afterwards, I remembered over and over.  I became obsessed with is there an afterlife or God.  I tried to reach out to others.  My soul begged, please just hug me and love me.  People misjudged this.  I was told to get over it…  I planned my entire pregnancy.  I brought things.  I took my folic acid three months before hand. I went to the doctors.  I toured churches looking for that perfect family church.  I went to the OB GYN.  I made sure all dental work was complete.  When we learned our baby had multiple birth defects, it tore me apart.  Although not every pregnancy had a happy ending with us bringing home a baby, I appreciate and give thanks for each one.  I am forever their mom.

My first born Avery died a day after birth in our arms.  I wanted to take her place so bad.  Avery barely opened her eyes.  When we spoke to her, her head would turn and she would look for us.  I nicked named her Avery Bravery.  In my darkest moments in life, when I need to be brave, I whisper, “Avery Bravery.”

My first rainbow is 11 years old.  She gets so excited and happy.  She still happy dances.  I have so many wonderful memories.  I am filled with her love and wisdom.  At times, she says things with such great wisdom as if she is 11 going on 80.  Her name is Hope.  I love to see her dance with such gratitude and grace.  Hope fills me with Hope.  Every day, I see a young lady growing up fast.  I am honored that her care as been entrusted to me.  I am proud of her.

I wish a rainbow meant it would never happen again.  Sadly, we lost a pregnancy at 6 weeks and 13 weeks.  I love them from the moment, I tried for them.  My heart was empty.  They were mine for the time they were here.  I desperately tried and lost them.  They are apart of my being.

At 18 weeks, we lost our son Haven.  For weeks, we did not know if we lost a boy or a girl.  We had to name him something either a boy or girl could use.  Years later, unknown to me, I was gathering medical reports.  In the pathology report, it questioned if Haven had been a twin.  I found myself grieving two babies.  I could not hold him because  he had been dead over a week.  We buried a baby without knowing if it was a boy or girl.

My miscarriage at 13 weeks as previous mentioned in the blog was at Christmas time.  Shortly after Christmas, I was outside crying and shoveling snow.  I heard an animal crying horribly.  Under my neighbor’s porch was a all black kitten with a small patch in the shape of a heart on his chest.  He had an abscess on his neck.  We took this kitten in with the intention of finding a new family.  The kitten was estimated with the actual birthday of Haven’s original due date in September.  We named the cat Raven.  When I tried to give this cat away, Hope said, “my cat.”  She was 2 years old at the time.  Raven is like Tigger from Winnie the Pooh.  He gets so excited that he pounces on you.  As small as he is, he can almost knock the wind out of you.  It broke my heart, when I had breast cancer, because literally I need to put Raven in a room because he would pounce on my chest or treatment area so hard.

This leads me to my daughter Addison.  She was born still with the same rare disease that the doctor’s said it would most likely never happen again a week before Thanksgiving in 2009.  My heart broke as I watched Hope, who was 4 year old cry.  For many years afterwards, Hope took it hard when she learned someone at school became a big sister.  She asked when it was going to be our turn.

Eight years of infertility and pregnancy losses, I am happy to say it was with Joy that Joy was born.  At 20 months, she has taught me a lot.  She is not sitting in her highchair what so ever until she gives Buddy, our dog, a treat.  She is going to strap herself in.  Joy is still trying to change her own diaper.  She is independent and going to be an outstanding CEO someday as soon as we survive toddlerhood.  She is your classic toddler with a heart of gold.  Over half of my steps on my pedometer are from chasing her.  Keep reaching for that cell phone or keys, because sooner or later when no one is looking she gets them.  Set goals and reach them.  Life is adventure.

I have said this before.  Without seeing all my babies, it’s like I am a painting at a museum half covered.  If you look at my professional accomplishments only, you miss the picture.  If you see me as a breast cancer survivor only, you miss the picture.  If you only see me as the mother to my two Earth girls, you miss the picture.  You see the whole me, when you can acknowledge everything.  Without one piece, you miss the picture.   I carry my love always.  My gratitude is to be alive to see another Mother’s Day and to all my babies, who chose me to be their mom.

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

Dear Egg Donor and Sperm Donor:

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

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

Sincerely,

Ellen

 

Today is my Birthday…

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

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

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

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

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

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!

 

 

Thinking About Summer

So many summers were ruined by my diagnosis of infertility. I learned before a family vacation to Lake George NY that my eggs were… How to say this? First word was that comes to my mind was the word Bad. So let me try this again… My eggs had low chance of conceiving a viable pregnancy due to my age and chemo treatment. That sounds better.

I took it really hard. We had been trying with donor sperm already. It came to a head on our last day of vacation a few years ago in New York. Our cell phones were struggling in Lake George. I couldn’t find a pen, we were at a pool. Literally grabbed my lipstick and wrote the number on my hand. Insurance declined the doctor’s request to do a procedure called ICIS. (The sperm is shot into the egg instead of it being allowed to swim around in a petri dish.) First, I am frantically looking for paper and a pen. I am thinking people at the pool had several thoughts about me. Look at the woman at the pool writing a number on her hand in lipstick. Hot date? No, the fertility accounting department called me. The vacation got even worst. I decided to let my health insurance have it. Of course the signal kept dropping but I tried from Lake George, NY to Massachusetts. Of course, my heart was broken.

My husband and I had years to prepared and come to terms with donor conception. We grieved it couldn’t be his sperm. I felt myself grieving every pregnancy loss, negative pregnancy test and my genetic self. I also had agreed to medical menopause during chemo treatment. The genetic test was drawn for us and lost during the time I was diagnosis with breast cancer. Later we learned we could have used my eggs. Insurance will not pay for fertility saving treatments for cancer patients. There was no guarantee it wasn’t my eggs fault for the rare disease. So, I knew the results were not good but I choose to try Lupron before chemo for medical menopause. The theory is.. If your ovaries are shut off, chemo will not attack them. I found myself grieving I had gone through months of hot flashes during chemo. I was hormonal 36 and I turned 60 something over night. Not a pretty picture. Then we the chemo ended, it was a rough hormonal journey back to 37 (I had a birthday.) It was all for nothing. I walked through the park sobbing. It was over.

We went home. I woke up in the middle of the night in tears. My daughter had asked to go to the Red Sox game. My anxiety was so high. I was grieving it all… The deaths of our daughters, the loss of using my husband’s sperm, the loss of my eggs, the miscarriages, breast cancer and every negative pregnancy test. At this time, I belong to a breast cancer support group for young women. It happened one of the younger women in the group got pregnant. In my grief, I was struggling. I did say congrats. It was the third text about morning sickness that I lost my mind. They honestly couldn’t get it. I texted them and told them about my grief. I told that I felt I couldn’t be apart of the group anymore. One member texted me that I was “selfish.” My anxiety rose. Then the snoop/friend at my job started texting me. We were in the bleachers. I am not a fan of any sports. I wanted to cry and scream. Here were all the happy people because the Red Sox were heading to the world series. Here I am asking, is it over yet? My husband said, they just played the national anthem. I drove them nuts…. What’s and inning and how long does it last? How many inning are there?

I struggled with smoking after bad news about pregnancy tests and fertility treatment. I felt like everyone in the bleachers were caving in on me. Finally, I left to have a smoke because my anxiety was almost to hospital level portions. I was fighting the tears without little success. I don’t know who the boss is at Fenway. I asked for them to show me where to smoke and he was kind enough to let me smoke with the employees.

Thankfully, Maria, my good friend was around and we were private messaging each other. We have never met in person. We had a pregnancy loss at the same time in 2007. She lives in Michigan and I live here. We follow each other in social media.

I survived and left the breast cancer support group. There were other issues with the group. Hope was five when I had breast cancer. One woman had breast cancer before her daughter and decided to never tell her daughter. She told her daughter we went to school together. My daughter just had to ask tons about going to school with this woman. It put me in a uncomfortable place, because I try not to hide anything.

Another summer later, we never knew when we were leaving for treatment to the embryo donation program on the West Coast. Last summer, I was pregnant due any day now. I am telling you the Red Sox story for a reason. Hope asked to take dad to the Red Sox game again. Like I didn’t ask when was it over enough? I decided I owed them that. We are going.

This year is different. We are scrubbing walls and finishing the family room. I have been doing this since February. I haven’t gotten much sleep. I started the family room when we were getting ready to try in the summer of 2003. No history of any problems. I was glowing about pregnancy not even trying. I was buying things for the baby. Rare disease? Never heard of it. Sadly, Avery died a day after birth from rare disease. I blamed myself. I blamed the paint and chemicals. I refused to ever finish the family room. We are getting close to being done 12 years later. At points, I hugged the painted walls and cried. It wasn’t my fault. We were the first family in this world to be carriers and not have the disease ourselves. Lately, I have been trying to work on forgiveness for the psychological harm I did to myself. I want to name the room after her. All this cleaning and remodeling is tearing me up.

I long for summer. I am hoping to be done with the house soon. We didn’t know the toilet was leaking in the bathroom. The plywood to the floor was replaced. I am cleaning the walls in case the mold traveled. I just wanted new floors. I am excited about the family room soon to be done. Joy is our last child. It’s a full circle of 12 years of our lives. Lately, I have been feeling sad about selling the family home next year. Hope is entering her last year of elementary school. There is no afterschool programs after next year. This city is not safe. Hope was lucky to have a chance to go to school in the next town over. It’s time we live there. This was the home all my five babies that I lost were suppose to come home to. I love the new floors. Joy’s room was painted in murals. It’s going to hurt saying good bye.

I have luggage already with Father’s Day. My father abused us and left. I will be displaying my mother’s picture again as a symbol to honor her again. She did the job of two parents as a married single mother. Yes, I typed it that way. We are talking about trips. I look forward to days with both my girls. I don’t like sports. We are surprising my husband with a Red Sox game. Hopefully we enjoy it! I just started a new job so we plan to do things here and there. We won’t be taken a whole week off together as a family. My husband and I grow stronger as a couple.

The Afterlife Of Infertility Treatment

It was about 13 years ago, I started prenatal vitamins.  I went to the OB GYN, my regular doctor and my dentist to ensure I was healthy.  I had just reach a huge career goal after not passing the first time.  I looked at churches, I found one that I liked.  Yes, I was 28 years old and ready to have our first baby.  It’s like watching the Titanic victims line up to board the Titanic.  We opened this Pandora’s Box called we want children.  We found recurrent pregnancy loss, infertility, rare disease, male infertility, breast cancer and female infertility.  Somewhere deep in that box as the demons were freed our Hope and Joy stayed.  So, we got our dream.  For many years, my hobby was to plan and try again for another cycle.  My favorite motto: Everyday I am googling for a baby.  Maybe next month, next year?  Just keep praying.

One year went into another year and another year.  We broke medical history by becoming the first family to carry this awful disease onto our beloved babies.  We kept loosing babies late into the second trimester.  I spent 70% of my time trying to stay and get pregnant.  Now that our dream has come true.  I see the damage to my life.  I took jobs that I could take time off to get infertility treatment.  I put our daughter into daycare to have child care for  infertility treatment.  I work during cancer treatment because I didn’t want to loose money.  Sadly, we owe years of bills for fertility treatment.  Embryo donation was not covered.  Our daughter Joy was conceived embryo donation.  Our neighborhood has turned violent.  We never updated the house, because we needed the money for infertility treatment.  When my beautiful baby came to the world, I had to put her in day care to pay off the bills caused by infertility treatment.

I am still waiting to hear about the new job.  I have been waiting for this new job for months.  Last week, I went to my inpatient company’s party.  I worked full time at points over the past years and per diem.  I still work with kids commission style.   I am starting to wonder about this new job.  I am not getting Saturdays off, which is important to my daughter, who is on a dance comp. team.  I have no benefits.  I literally could take today off because my husband got his bonus.  I wonder are you settling for less?  Two weeks ago, I stop taking prenatal vitamins.  My baby daughter has been very sick with a chest cold.  She threw up repeatedly these past two weeks. We ended up seeing a GI specialist for her.  The GI specialist thinks it’s the cold and the baby is gaging herself, when she coughs.  She just got a nebulizer last week and she not coughing at night anymore.  I don’t know what the job answer for me is.  I worked so hard to get here.  I do have career goals, when I looked into both my daughter’s eyes.  I just want to be with them.  I want to be the mom that is there.

Today was an interesting.  It was the first uterine ultra sound without being pregnant or trying to become pregnant.  Thankfully, no Fibroids were spotted.  I have been having heavy bleeding during my cycles since having the baby.  My OB GYN thinks I will need meds to control the bleeding until menopause.  Every time I enter the state of Rhode Island, I see a sign that makes me sad.  It has a picture of a baby as a sign that there is a God.  I remember being infertile and burying our children.  If you are bereaved, some question God.  I love my babies Avery, Haven and Addison.  A piece of me died with them.

After 13 years of trying and hoping, I had a baby.  The roads of my life are open.  I see how much I gave up in my life in my quest for a baby.  I don’t know where to go.   I am keeping myself open to all the possibilities.

 

Signs Of Stress In My Body: Renewed Grief

I had some fun during the holidays. May I please be the first to say that I am glad they are OVER! I went back to work way earlier with Hope, my oldest daughter. That return was way easier. This return to work has been the toughest ever. With my daughter Hope, my mother was around. I had the only grandchild on my husband’s side of the family, so the in-laws were willing to help out at least one day a week. I am a different person. Over these years of struggling with infertility and breast cancer, I had to learn to become a one woman cheerleading squad quickly at times. I also had the love of some family and wonderful friendships to give me my daily strength.

I had to get use to dropping my rainbow, miracle, million dollar baby and one cherished daughter to daycare. I believe she is in good hands.

Joy Mary Julie is named after my dance school teacher Julie, who battled cancer since her teen years. Julie never gave up her dream to have a dance school. Her death didn’t stop that. The dance school lives on. Joy was my dream. I was having that baby. Period the end. I stopped talking to everyone over it before I got pregnant. Because if I had to listen to people tell me my answer again, I was going to get angry. Julie’s mom teaches at one of the daycares. The daycare has not been my source of stress lately.

I have had difficulty returning to work at the kid job. I set boundaries. After 8 years of working so hard for a baby, the last thing I want to do is say, “Sorry Joy. Stop crying. I have paperwork to do.” Especially with Joy, she has acid reflux. She is growing at a rapid rate. I may spend the morning just feeding her. I got a different part time job that pays for daycare. This summer it was tough to work a bunch of hours commission style and not make any money. I was in the later stages of pregnancy working two jobs. One job appeared to financial support the other job. Ironic a little? The time I wanted to give to Hope was spent on bed rest due to the swelling or working on work without pay at home. I was welcomed to return one day a week. Immediately, the computer failed. I could book getting “paid” because of it. It’s a lot of money to infant daycare. We had to upfront the money after a unpaid maternity leave during the holiday season. I was assertive with them. The response was to make me feel like I was going to be fired. Then, they left it that way in time for the holidays. No words of comfort. I cried very hard. Now the emails have turn back to business as usual as if this was a poker game.

Our house was falling a part. The electrical problem in the kitchen returned. The wash machine broke. I got a cold of major portions. There was barely time for anything including breast feeding. The new job was not able to clear me on time to start as plan. Lucky for me, I have the per diem job in a inpatient setting. I was able to work the entire month. Christmas Eve, I get the big idea to use the fire place. We ended up evacuating due to the carbon dioxide alarm sounding. I had to wake up both children to get them out of the house. At the time Santa should have been arriving, the fire department came instead. We were lucky and we could return to the house. So many people don’t have a home during the holidays.

Joy had her first cold right after Christmas. She has been teething the entire month. She was sleeping through the night, then she stopped. Last week, she was coughing herself awake. I worked New Year’s Eve and New Year’s Day. We had to take her to the ER. She is okay. There was nothing they could do.

Saturday, Joy was still not 100%. We had plans to go to Boston and we needed to shorten the day. We drove in to go out to eat, see some Christmas lights and come home.

My body has been under a lot of stress. The house is at maximum storage capacity. There has been barely time for housework. We are also working with our new dog Buddy to get him house trained. This weekend, I am teaching my oldest to organize her room, which is always a painful process. She was telling me how this is all a sign that I don’t love her for the 9th million time. I went to the bathroom and the worst fear of a cancer survivor occurred. I saw a small lump on my throat. Cancer survivors live in fear of the cancer returning. I grabbed my husband as my oldest was giving me her speech. Somewhere in the late afternoon, we finally organized her room. I decided let’s go shopping and eat out. I am starting that new job this week that I got 3 months ago. I was having anxiety attacks. Yesterday, I called my doctor first second I could in the morning. It was a long day. Joy had her physical too that day. The doctor thinks it’s a calcification. I need an ultra sound and may need surgery. It looks like my breast milk may have rapidly decreased or it is drying up completely.

If you have been following me for years, you may remember this. After a few miscarriages, I began to have cycle problems. I had to be persistent and write it down for months for the doctors. This was before the breast cancer. They couldn’t figure it out. A biopsy showed an uterine staph infection, which I could have gotten from anything like ultra sound machines or having a D&E. Well, I am having problems with my cycles again. I know it could be anything from the breast feeding to menopause. I got up and I realized I had to change my clothing and wash the stool that I sat on. It happens that fast. At this point, I am calling the OB GYN. I called my husband at the gym to return home and went to bed, when he came home.

Today, I am up. I need to clean the house quickly. I am having our pet sitter walk our dog until I can establish a schedule with the new job to come home during the day. The accidents with Buddy are due to the fact he is almost 2 years old and not neutered. He can’t be neutered until obedience school is over due to risks of infections. We have 3 weeks of obedience school left.

My plan today is to get done what I can and rest/relax. I am going to try to fix my low breast milk supply by pumping more. Tomorrow, my work week starts with the kid job. I start the new job on Thursday. At this point, if I have to, I am leaving the job working with kids. Every week, I am starting to wonder what are they going to do to me this week.

I also don’t want anyone to misunderstand me here. I am so grateful for my two daughters on Earth. We had a son, who died 18 weeks into pregnancy. I don’t want to continue to try to have any more babies. It took years to get here. There are a lot of bills due to going out West for embryo donation. I want to sell the house and move to another place. Maybe get a bigger house? Lately, it hurts about his loss. My oldest daughter and I have been joking about how Buddy, the new dog is my Beagle son. It’s a sore spot, but I am closing the book on pregnancy and having more children. I have been doing this since I was 29 years old. I am 41 years old now. I have been pregnant 7 times and I only have two daughters on Earth. I am done!

The Dust Of The Weekend

I have been on “maternity leave” over the past few weeks.  Due some bad timing of events and significant changes, I needed to take work home.  There are no benefits so I am doing this on my own.  Sunday night, I had significant Braxton Hicks or the fake labor pain going on.  I kept hoping this was going to stop, it didn’t.  I got 2 or 3 hours of sleep.  I decided in the middle of the night to page the doctor, because the hospital is an hour away from home.  Some anti acids got me back to sleep.  Yesterday, I fell asleep every few hours.  What I need to do for my job is significant.  In the mist of all those fake contractions and wondering if I would have a C-section in the morning, I found a job for me to apply too.

Our family has been through more changes than a baby finally coming after 8 years of repeated infertility attempts.  My mother-in-law was diagnosis with this genetic disease called NF2.  She is loosing her hearing due to it.  This diagnosis occurred when my daughter Addison had died and a month before the breast cancer.  We had no idea. My life had become a living disaster of cancer treatment appointments and kindergarten school shopping.  My daughter’s innocent world was destroyed by the death of the baby and her mother’s breast cancer diagnosis.  She was learning an alternate alphabet than other 5 years olds.   One of the saddest moments happened as well that year was we learned how we had two babies with Campomelic Dysplasia.  We were called one of the first cases in the world.  We still had jobs, a kindergartener to raise and breast cancer to fight.  It didn’t register about the NF2.  It took years for us to recovery from learning our family was one of the first.  I still wanted a baby even through I just getting my hair back.

Over the past few years, I noticed my husband was struggling with hearing.  He would not do anything about it.  I was just being a rude person.  Then, he started missing information at work, so he scheduled a hearing test.  This is when I learned about NF2.  I had my own stuff going on.  We just got pregnant with embryo donation and I was getting over a threatened miscarriage.  He needed an MRI to see if he had this genetic disease his mother did, where the body would make non-cancerous tumors on the central nervous system.  The fact that they were looking at him awoke me to the fact this could impact my daughter.  My mother-in-law and I have drifted apart.  I think it’s because I seem to give her grandchildren to burry and her daughter had one miscarriage/ 3 kids.   She change and I changed.   She no longer called.  She would up and cancel.  I wasn’t in the loop.  All I was told was my sister-in-law wasn’t getting along with her wife.  My mother-in-law is about those 3 kids.  Over the weekend, she told my husband he never told her about going to the hospital for the baby.  It was the last sword into my coffin.  I had enough of this.  I cried.  I made calls and two friends volunteered to help.  So, I emailed her and I was called rude.  Well, this has been going back and fourth between us.  The family lives in two separate worlds.  In this past year, when she was the phone.  The phone is passed around between husband and my daughter.

I am trying to understand this NF2.  They can do nothing about my husband’s hearing loss.  I don’t know what this Campomelic Dysplasia and NF2 stuff means to my daughter’s future.  On Sunday, she was ready to tear me apart for being rude to grandma.  Yesterday, my daughter was  more talkative.  I resent the way my core family operates.  Last time I checked it was not me, who filed for a divorce.  My sister-in-law’s wife with the divorce lawyer is the conquering hero to my in-laws.  Please explain this to me.

My daughter told me a few things such as her three cousins are hard to deal with.  She told me Grandma has a vision for her as the oldest grandchild.  In this vision is my daughter will babysit her cousins.  Now, I grew up a product of sibling abuse.  When people hear the baby and my daughter are 10 years apart, they think of her as some type of automatic babysitter.  So, last night I was in mediation class.  I swore I would never let them make my daughter the head babysitter.

My husband is now saying his mother plans to be at the hospital to care for my daughter.  At this point, I will believe him because I am emotional tired.  For eight years, I dreamed of this moment.  His inability to make limits shouldn’t destroy my happiest moment of my life greeting that rainbow baby.  My brother attempted to destroy my daughter’s birth by telling the pediatrician that I was mentally ill for giving birth to my first child.  I am 41 years old and I know I deserve better treatment.  I will thank my friends and move on.  Hopefully, they show up.  This is this baby’s actual birthday, they aren’t ruining it.  My meditation teacher cautioned me from shutting them off.  They have always had full access to my daughter.  They can have access to this one too.  PLEASE STOP TREATING ME LIKE POND SCUM!  I get I am not their family, but I deserve to be treated like a human being with feelings.

Meanwhile, I feel for my daughter.  She is having a hard time to adjusting to everything.  Our house had to be rearranged.  There are boxes of her stuff waiting for the multiple purpose room to be completed in the basement.  We literally just made enough room for the nursery and made the house functional.  Yesterday, she spent most of the day looking for her assignment.  The new teachers write the kids/parents a letter.  She sits down to do hers with great enthusiasm.  She stuffed in a drawer and we spent hours looking for it.  We found it.  She went to the orthodontist yesterday.  Then, we went to the mall to get my oil changed.  Her father met us there.  I went to mediation class.  She couldn’t find her retainer.  I thought I lost it.  At 11 last night, I discovered she put in the baby’s car seat.  She is not use to being home and not use to having her stuff piled.  I am sure she is scared.  I did send an email to the new teacher letting her know a new baby is coming a week before school starts.

Enjoyed Hope’s Birthday Party!

I had the best time at the party.  Many of Hope’s (my daughter’s) friends have mothers, who I enjoy speaking with.  Especially, two mothers who have only one child by choice.   Friendships are very different with only children.  My daughter has struggled with the deaths of her sisters due to rare disease.  For many years hearing others were to become the “Big Sibling,” made her cry.   Hope was my drive to continue in fertility treatment.

My husband’s parents canceled last week.  By the time of the party, I moved past it.  I am just now starting to learn about rare disease number 2.  This NF2 disorder.  I don’t know what is going on with this non-cancerous tumor in her head.  Monday, she again accidentally called the house.  She does not acknowledge Hope’s birthday the day before.

Anyways many of my friends are aware our family lives in separate worlds.  He goes to his family, I am not a part of it.  We are slowly preparing for the C-section.  Only one person may stay with you during the maternity ward stay.  My husband’s parents only agreed to watch Hope for the C-Section surgery only.   I don’t know if they will cancel.  If they do, I am my greatest support person.  He is going to have to go and watch Hope.   So, I asked my husband to get a hotel in the area of the hospital for him and my daughter to stay at.  My friends were upset that I would be alone.  At one point, I would fight hard.  At this point, I am about acceptance.  His family will come to the maternity ward and I will not be treated like family.  Many times, I grieve this lost.  Over the course of this pregnancy, I learned I have many good friends that are my family.  I survived my breast cancer through friendships.  I struggle and grieved the lost of my family.  My husband was upset because he thought his sister was not showing up because she was late.  She came, I am polite.  Our families live in  separate worlds with one connection my daughter.  I don’t know if they will accept the baby, since the baby was conceived by embryo donation.  It will hurt no family of my own will come to the maternity ward.  My plan is to go to the family room if it gets to be too much.  I can’t make his family feel a love for me that they do not have.  Tonight, my daughter begged to call her grandparents because it is her birthday.  I told her she needed to do that with her father, because they would not answer my cell phone number.  He called and the phone was passed back and forth between them.  I am exhausted from them.  My hope is someday, I will grow old enough to have my children marry and to have children of their own.  I will show their spouses love and their children that I didn’t have.  After the baby is born, I will continue to seek spiritual connection with others through meditation.

The home front is quiet.  As long as the topic is child care or house work, we have peace.  The second, I seek a spiritually connection, it’s a war.  He will not draw boundaries with them.  It’s more a friendship than marriage.  Tomorrow, I am canceling my mammogram.  I looked at the hospital website.  The baby will not be old enough for the child care at the hospital.  He has to come and watch the baby.  The effects of his mother having this NF2 genetically for our daughter has been over our heads the entire pregnancy.  The baby is fine thanks to embryo donation.  My daughter Hope, I have no idea what this disease means for her future.  It scares me that any point her body could make these non-cancerous tumors anywhere in her central nervous system as early as age 22.  I texted my husband (texting is a gift since we learned he lost his hearing) how about we try to speak to the geneticist after the mammogram.  So, I am going to try to get an appointment for both in one day.  I will Hope my daughter Hope is okay.