The Chaos of Goodbye & Hello

I haven’t had the energy to write.  A great friend with a white heart and big black paws has died shortly after Valentines Day the night of a snow storm.  Just 11 years earlier, I had miscarried and had a D&E a few days before Christmas.  We had our 2 year old daughter Hope.  We took turns faking smiles and crying outside so she couldn’t see how broken we were.  A few days after Christmas, I was crying and clearing the snow off my car.  A heard a faint meow that forever changed my life.  “Where are you kitty?” I asked.  An older kitten came out from under my neighbor’s porch.  It was absolutely freezing out.

It was 2008, the housing market crashed.  People were abandoning their homes and their pets.  I picked up the kitten and showed my husband, who encouraged me to bring him in the house.   It ended up a neighbor lost the apartment and abandon the kitten to the streets We were trying to decide what to do on our infertility journey.  It was the third miscarriage in a row.  I looked back on my old journals.  Everything evolved around finding answers for my infertility caused by recurrent pregnancy loss.  Every now and then, there was a sentence or two about “kitty.”  I was trying to find him a home and find an answer to a mystery.

At some point, I did find “kitty” a home.  The night before he was to leave, two years old Hope was crying, “my kitty.  He’s home.”  We decided “kitty” was staying and I had to tell this person that we changed our minds.  We named him Raven.  Raven was born on one of my due dates by the vet’s estimate at the time.    He was best fur friend.  He had the personality of Tigger from Winnie the Pooh.  One vet said, this isn’t a cat.  This is a muscle.  Raven had Core strength.  One hundred percent muscle cat with a white heart on his chest.  When he walked on you, you knew it.  Just like when Tigger would pounce on Winnie the Pooh.  When I was diagnosis with breast cancer, Raven had to be put in a separate room.  He would walk all over the treatment sites.

In 2014, when I boarded that plane to the West Coast to get pregnant through embryo donation, I told God, “I am not here for any cat.” Strangely enough, I decided to leave early for my plane and have a look around before leaving.  One of the stores did this giant window display of homeless kittens and puppies.  I look at the window and said, “I have plane tickets to Boston, who is joining me tonight?” The shelter didn’t allow out of state adoption.

My friend. My comfort.  He stood through many negative pregnancy tests, miscarriages and breast cancer treatment.  I couldn’t find him one morning.  I found him an hour and half later in a tight corner by a white bureau and the furnace.  I thought he had died.  He was barely still alive.  We rushed him into Boston.  The brain tumor had advanced so much.  No more meds could keep him alive.  We went into Boston for the family to say goodbye.  My three year didn’t know what to do.  She announced to the waiting room with a smile on her face that her cat Raven was going to die tonight.  Joy has no clue about death.  After we saw him, they left the room.  I held him as he died.  Joy started singing ironically, happy birthday in the car.  My oldest was screaming at her.  For days, I couldn’t figure it out why.  Then, I got it.  Avery, my first born, who died was born on the 21st.  Generally, we go out and do something as a family.  Joy must have confused about this whole death/remembrance events within days of each other.

We were suppose to go to the water park to mark the birthday/death of Avery.  The house was a real disaster zone, we brought a new kitchen pantry.  Stuff in the basement was thrown about.  We are looking for Raven in the basement for quite sometime.  He had either another seizure or even a stroke due to the brain tumor.  All I did was sit on the futon and cried.

We had actually been talking about adopting another Maine Coon cat before Raven died.  A few years earlier, our Maine Coon cat had passed away a few weeks after my birthday.  He was very bounded to a female cat who died two weeks before my birthday.  I started looking.  We had stopped due to the remodeling of the house, Joy’s birth, followed by more remodeling and Raven’s seizure.  I stopped because it’s a lot of stress for cats to get use to one another.  Raven’s health was declining.

Valentines day, my husband and I talked.  It’s been a rough few years in our marriage.  I resigned to being legally married to a room mate.  He was touched by the 50th birthday party.  He took me out to get my makeup done.  He brought all this expensive makeup for a chap stick girl.  All along, I am thinking this stuff is expensive, but he wanted too.  I am thinking I just talk our oldest out of this designer make up kit for Christmas.  I made a choice to give our marriage a try.  Maybe I am hanging on too long.  When it comes to rare diseases and marriages, it’s like this.  We have been through a disaster together loosing our two daughters, all the miscarriages and infertility.  It was only our lifeboat that made it.  I am not sure I want to cut off the only person that was there.

Yes, it is a codependent pattern of behavior.  I can’t keep going on like it’s a room mate situation with a legal title.  Is that closeness?  Life is suppose to filled with precious attachments.  I have been living withdrawn for too long.  So, I let a lot of surface friends people go.  Once again my heart and trust is on the line.  I am going to try again to bring the spark back.

This year for rare disease day, we had a pottery shop willing to donate a percentage of proceeds to the National Organization For Rare Diseases.  I posted it everywhere.  I don’t know how well it did.  The night of what would have been Avery’s 15th birthday, we went out and painted pottery.  Our vet did the nicest kindest act.  They sent us flowers for Raven’s death.  It arrived on what would have been Avery’s birthday.  We painted a mug for the vet and filled it with candy.

We spent that week after Raven died looking at animals at shelters.  Good news spraying and neutering is working.  Now, our state is flying in cats from other places.  Avery’s birthday was a good family day with the girls.   I took them out for breakfast and lunch. We dropped off 15 roses to her grave.  I said pink.  Joy said red.  Hope said pink.  We mixed them up.  Unfortunately,  15 is a odd number and the woman behind the counter kind of gave us a hard time because she had to open up different dozens roses to make the count.   The last one, I said just add a white one so neither side won.  Avery got her roses.  We headed off to a mall near a old shelter that I had worked at.  The shelters had a hard time finding a kid friendly, dog friendly and another cat friendly cat.  I started looking on line.  I found a few scams.  They didn’t get money from me.  Amazingly, Microsoft called us all concerned about our computer.  Obliviously, this was another scam.  I thought ironically maybe there is a connection.  I excitable said, “I am so happy you called.  Let me put you on hold.”   I hang up the phone.

I quickly stopped by at a local shelter to pick up an application.  I had one of those what to do parenting moments.  There was this incredible loving cat with dog experience.  The cat went from one lap to another.  We found our girl.  We are verbalizing this is our cat.   Joy ran and cornered the cat.  All of a sudden Joy is bleeding from her face.  I had to tell the oldest not this one.  Both left in tears.

Second attempt at the waterpark, we were in the parking lot.  Both girls agreed to give up the waterpark to go back to the shelter.  We left and it was a mess.  First cats who are dog friendly aren’t dog friendly.  It was almost one and Joy hadn’t had lunch.  As a parent with a child with sensory disorder this is a disaster in the making.  Any small child would be having a melt down.  One is too late and off routine.  It was close to lunch when we went and an hour later we were still there.  The woman insisted Joy stayed.  I don’t keep vaccination records of our animals on me.  The vet was closed.  I was calling a few places open that would have them.  We got one immediately from the boarding place my cat stays.   The dog boarder it is hit or miss.  She is with the dogs.  Sunday is a non doggie daycare day.  I am saying let me take the kid out to lunch.  I will keep trying to call her.  This woman got infuriated with me.  No, the child needs to stay.  I want her to spend more time with the cat to see what the cat does.  I am like no, we aren’t doing that.  I told we would be back.  I am pulling into the driveway to see if I have the dog’s vaccination records.  You need them for the license renewal in the city.  She calls me and abruptly says, “don’t come back.” Now I am angry.

I lied and told we weren’t planning too anyways.  I did get one call back for the number of inquiries from private adoption.  The person stopped answering my texts.  I called it another scam and called it a night.  She texted me the next day.   I spoke with her for a bit.  It seemed legit.  We made plans.  I am picking Hope up from school and I am telling her that I found a kitten.  I went to the ad.  There is the kitten listed at a higher price.  I start freaking out I found another scam.  She told me that it was a misunderstanding between her and her husband.  I made plans.

My oldest Hope has had an increase of vertigo. Right before vacation, I couldn’t take Joy to her last play group because I had to go pick up Hope sick from school due to the vertigo.  I wasn’t going to leave my oldest alone having dizziness.  Joy and I stayed home that day.  Only one neurology appointment left on a work day after school vacation week.  It was that or wait another good month.  I took it.  It was suppose to snow the night I was getting this new kitten.  Hope knew about the kitten.  We didn’t tell Joy incase it was a scam.

I have spent most of my time this week putting life back together after Raven died.  We had the new pantry assembled in the living room.  Out went the old one into yard before another snow storm.  Apollo gets along well with the dog.  The other cat Sweetie is tolerating him.  Something mild is going on with his stomach.  After my mammogram tomorrow, Apollo meets the vet.  Now that is March it seems to be snowing more than ever.

I drove from Boston back home to get Joy from daycare.  Then, we had to drive to the NH border to meet the person.  My husband had to work late.  We hit construction.  Right before a snow storm, they are tearing a bridge apart.  We got there and I was scared a little.  I didn’t know this person.  In her arms was this tiny meowing creature.  The only name we could agree on was Apollo as a family.  The snow started 5 miles of the home exit.  We made it.

The doctor wants Hope to have an MRI.  Tomorrow is my yearly mammogram.  It’s almost been nine years since I was 36 years old and just diagnosis with breast cancer.   It was my first mammogram.  I am anxious.  I have been very itchy.  The doctors did a breast exam. The only thing they found was dry skin.   They recommended an earlier Mammogram.  I wasn’t able to with all the appointments for Raven.    I sat anxious.  Mammogram day have not been a good connection between my husband and I.  This year, I am going by myself on the train.  Joy has gymnastics anyways.

I understand the brain MRI is routine.  I felt anxious because my mother-in-law got confused she had some genetic rare disease disorder brain tumor.  I struggled with it for a long time.  Finally, I had a heart to heart with my husband concerning mammogram day behavior and the heaviness of wondering if Hope is okay.  My mother-in-law’s  personality has changed.  I can’t ask her directly anymore.  He clarified it with her that she doesn’t have a rare disease.

I have been asking for help with my anxiety.  These upcoming days are tough.  Hope has a brain MRI on Sunday.  I have my mammogram tomorrow.  It’s tough, because I know I don’t have a lot of healthy support on these days.  My 45th birthday is coming at the end of the month.  I think I am going to end this with my saying for strength.  My daughter Avery fought so brave in the NICU unit for her life.  A day later it was not meant to be.  We had to choose to stop life support.  I always say Avery Bravery.  I will be glad, when it is Monday next week.  May Hope have Avery Bravery to get through that brain MRI.  May I have Avery Bravery to get through that Mammogram tomorrow.  May all this anxiety be for nothing.  Let Hope’s vertigo disappear in time for comp season.  Avery bravery let nothing bad happen to your sister and your mother during all these routine tests.

Deciding Against The Sale Of The House

I can barely breath today due to a cold.  Our youngest apparently had a week of getting a few viruses.  The last one was this cold both of us share.  I wish I had entered Co-Dependents Anonymous sooner in life.  I am the peace keeper.  The only cost?  My sanity!  We have not had the black mold outbreak of other years.  Only one event happened.  Joy, my youngest got a new leotard for her birthday.  It was less than a month old, when black mold spots formed.

I was working night and day to save money.  I wish I could have gone back in time and demanded professionals.  It’s abnormal to sleep two to three hours a night.  I wanted the house to be safe.  All these years, I never knew we had a growing problem under our toilet.  It exploded after that miracle baby Joy was born.  I blamed myself.  Who can see under the floor boards?

This weekend was intense with my significant other.  His bank he works at was merging with another.  This the year we promised the Disney World trip at dance school.  I am very concerned something neurological happened when he was drinking.  Literally, every house I pick wasn’t good enough in that other town.  I stopped looking.  He finds this house another fixer up with two bathrooms.  One pink bathroom and a blue.  It took him almost 20 years to get ours replaced.  I said, “No.”  I pointed out how much repairs are needed.  I am done with these fixer uppers.  He agrees.  End of story, but not really.

We don’t get along well.  Last weekend was suppose to be a quiet weekend.  Our youngest Sensory Disorder child knocked over his drink going after the butter.  She gets fixated on items.  At home, I am putting those items on top of a refrigerator or some place high.  He goes to the bathroom.  I tell him to get someone from the restaurant to help.  He returns with paper towels.  Are they coming?  I asked.  He said no that he is going to clean it up.  I am angry at this point.  I blew up.  I got help.

Okay, we are doing good.  Mess cleaned up.  Diner is on the table.  Joy is refusing to eat her diner.  Conversation is going well.  He says, “I spoke to my parents about that house we talked about.  I told them how nice it was.”

I wish I never went through pink bathroom one with you.  It was 18 years of arguing about the bathroom.  Titles were falling off.  That’s it.  I told him that I was confused because we talked about how both bathrooms would need to be replaced.  We talked about how the wall to wall carpeting would need to go.  Joy gets fixated.  We would have to fill in the swimming pool.  I am 44 years old.  That home remodeling stuff was in our younger years.  I did all these repairs and lost time with both kids.  I am not doing this anymore.  I want to be with our kids.  When Joy started showing signs of behavioral problems, I blame myself for not showing her enough attention.  We have since heard from another couple who used the same egg donor with twin girls. One of the girls is very fixated about launching her tricycle at home.  I told them our story not to diagnosis this kid, My purpose was to make them aware.  This place was extremely stressful, when we were painting and fixing it up.

Here’s my issue.  Is something neurologically going on?  I don’t hate him.  I wouldn’t call it a romantic love.  He telling me to decide if he should leave or not.  I honestly think three outcomes are possible.  We fall back in love and life goes on.  Two, with clear guidelines, we could live as room mates and co-parents in the same house.  I am not being pulled emotionally apart every weekend.  Not every action in this house needs to pondered as if what does this mean for our marriage.  Three, we could one nasty divorce brewing.

I did something foolish as a young person.  I told him to just pick a house without me.  He picked this one.  I kept thinking we are going to get financial better and sell it.  It’s the peace keeper in me.  The one who costs me my sanity.

Our house is now every individualized and it coming along.  Because there is a property value discrepancy, our house is going to be update and modern and we end up in more desirable place to live in a fixer upper.  We have a brand new black and white bathroom.  We get pink again?

I have no bedroom of my own.  I sleep on a futon in the living room.  He may have several food intolerances and he won’t address them.  All I did was offer to put a room in the basement for myself.  I would like a door.  I am not looking at houses anymore.  If this relationship is not going anywhere, we might well just keep fixing what we have.  I am at this point where there is a piece of me that craves the traditional marriage.  I am brunt out.  I don’t want to hurt the kids, so I have just put it in the hands of my higher power.  I can handle the answer if he is not interested in the traditional marriage I will deal with it.  I could live here.  This fighting all the time is not good for the kids.  Our oldest came home from a birthday party and started crying because we were fighting.  I want peace.  This post went back to the same place we started.  Ellen, the peacekeeper.  I get very anxious with all the options.  I did look into family therapy today.  I put him in my higher power’s hands.

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.

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

Dear Egg Donor and Sperm Donor:

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

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

Sincerely,

Ellen

 

#NIAW2017 Our story: The Journey of Hope & Joy

I am going to write a letter of thanks to women and men, who are donors.  Before I do, I am going to write a brief summary of our journey.  Fourteen years ago, we decided it was time for a family.  Before being pregnant, I glowed.  The year before we tried, I made sure everything was done.  I visited churches looking for the perfect family church.  I made sure I was healthy.  I brought baby items.  It was time for a baby.  I was so naïve at my precious age of 28.  I thought couples had sex and you just got pregnant.  I completely knew nothing of ovulation and timing.  It was disappointing the first month, we tried.  Nothing.  So, I read online how to get pregnant.  I got ovulation kits and within one month, boom we were pregnant.  At 9 weeks, I had a threatened miscarriage.  I woke up bleeding.  My husband and I headed hysterical to the ER.  The baby was okay.  We made it to the traditional 12 week mark and made the big announcement.  I say this with tears we were so innocent.  At the 18 week ultra sound, we were joking around and laughing.  We were play arguing about if we should learn the baby’s gender.  We were so excited.  The day after the ultra sound, we were heading to London for our honey moon (We couldn’t afford when we got married.  Life was great!

The ultra sound tech didn’t say much.  We were in a good mood.  After the ultra sound, I remarked to my husband, we didn’t get a picture.  The doctor called us in.  I said, “we never got a picture.”

The doctor looked grim. “The baby has multiple birth defects.  I don’t think the baby is going to live long enough to reach birth.” She said.

I can’t remember much after that. I remember screaming “no” like my soul was being shredded into pieces.  I remember falling and the doctor catching me to make sure my head didn’t hit the counter.  We were left through a back door to an immediate appointment in Boston.  I couldn’t stop crying and calling people.  We got the hospital and my husband had to lead me across the parking garage, because I couldn’t find the elevator.  At the hospital, they asked me for my license and for several minutes, I would go into my purse and couldn’t remember what I was looking for.  I begged them at the hospital to tell me that the baby just had Down Syndrome.  I had an amniocentesis test.  I asked them for a picture of the baby.

I came home.  My husband asked if we should cancel the trip.  I looked at him and said, “If the baby is to die before birth, then let’s show the baby the world.” We did go to London during the Bush demonstrations.  I couldn’t talk or breath.  I spent all my money (our cell phones did not work.) on the payphone trying to learn news.  The stress was so high.  We went to the wax museum.  One of the rides took our picture.  In the picture, it was a couple with broken hearts.  I never brought the picture.  I refused to have my picture taken the entire trip.   I went to Westminster Abbey, I kneed before every statue begging for our baby’s life.

Avery was diagnosis with Campomelic Dysplasia. We went through all the trisomy diagnoses.   I was born a rare disease mother.  People voiced their opinions about what we should do.  Our baby was becoming  was becoming a symbol for others about arguments for social issues instead of our baby and our choice.  She was born prematurely.   Avery died a day after birth.  I had never witness a human die.  I felt strong guilt for agreeing to do not resuscitate orders.  I never doubt there was a God.  As I watched Avery struggle for each breathe.  I became obsessed with is there an afterlife? I began to doubt God.  Many friends ended their friendships with us.  I think I hang out with a lot of emotional abusive people.  My own brother screamed at me for crying because, “this was my fault for not listening to the doctors.”

I had flash backs.  I finally left my job because they couldn’t get that I couldn’t be around babies.  I was getting flooded with memories of my baby’s last breath. When I reached out, I was told I was doing this for attention.  So on my last day of work, I did a very brave thing.  Someone brought in a baby.  I asked to hold it.  The memories were flooding me.  I held my composure.  The second, I was out of their sight.  I bite down on my fingers and sobbed wildly.  I kept trying to get pregnant over and over.  One negative pregnancy test after another.  I attended every one of the recommended doctors appointments and I was assured it was a most likely a fluke of nature.  Campomelic Dysplasia was usual thought of to be passed on by a parent with the condition.  Since neither of us had dwarfism or seemed to have dwarfism.  The other way was either my husband  or I had a genetic problem with sperm or eggs.  I was jobless and babyless.  At times, I told my husband that I no longer wanted to work in the field that I loved.  Thanksgiving day, I kneeled before Avery’s grave and begged for help.  I was no longer with the children that worked with and loved.  My Avery died.  My uterus was empty.  So, I kept applying for jobs in and outside my field.  I was going to a fertility center for tests.  Then, on December 1st, 2004, I learned I was pregnant.  My mother-in-law and I wrapped the test as a birthday present for my husband.  I started a new job.  Being pregnant again was not easy.  I played loud happy music to keep my anxiety down.  On August 11th, 2005, our daughter Hope was born.  I didn’t know if she was a boy or girl.  We stopped asking the gender question and gave thanks for a healthy child.

My brother and sister disappeared from my life.  They are very emotional abusive.  My sister was hiding her own pregnancy.  She said to me, when I upon me telling her the news of my pregnancy. “If you miscarry, I don’t want to hear of you crying. Miscarriages are away of getting rid of genetically inferior babies.  We don’t want genetically inferior babies in the world.”

I learned quickly that I couldn’t continue a relationship with my siblings.  It raised my anxiety.  So I let them go.  Weeks before Hope’s birth, they came back.  I was so positive.  Sadly, we hired the wrong medical team for our daughter.  I did not know my brother had physically threaten one of the doctors, when his son  was diagnosis with Asperger’s syndrome.  This doctor was on a revenge quest.  He treated me differently when I was alone.  He was sickly sweet when my husband was around.  It ended up being a blow up.  My brother calling me all hours of the night to call me, “a liar.” I took Hope to a different doctor.  Would you not know they were affiliated with that other practice.  I considered walking away from my husband and child thinking I was the problem.  I could go to doctor appointments alone.  Finally, when Hope was about 2, I had to ask myself who was paying who with the doctors.  Hope is a straight A and beautiful young lady.  She has a new doctor team and there is no problems.  Sadly, my niece around Hope’s age was born to my sister has several developmental delays.

I could write a book.  I was so convinced our losses were over.  When Hope was 11 months old, I decided to have another baby.  My in-laws felt I shouldn’t try because my husband’s sister was trying to start a family.  I got pregnant.  One nap time, Hope’s cross fell and broke in half.  I felt a strong urge to go to the bathroom.  I was bleeding.  I had a natural miscarriage at 6 weeks.  We tried again at New Year’s time.  The baby was developing normal.  At the 18 weeks ultra sound, I was told the baby had no heart beat.  It was my son Haven, who we could never hold.  He had died silently at 16 weeks.

I began to not tell anyone.  We ended back at the fertility specialist for recurrent pregnancy loss.  We had another genetic consult and we were given the same information.  They couldn’t find any problems.  There was a fade theory about MFTHR genes causing blood clots.  I went on Folic Acid and blood thinners.  I had to pay an co-payment of $300 dollars for the blood thinners. We got pregnant again.  It was Christmas time and at 11 weeks, I was told the ultra sound was normal.  A few days before Christmas, there was no heart beat at 13 weeks.  The baby was estimated to have died days after the 11 weeks ultrasound.  I had a D&C two days before Christmas.  We were heart broken.  Everyone was celebrating the holidays, my husband and I were in tears.  The doctor offices were closed.

Shortly after Christmas, I was crying and shoveling the snow off my car.  I heard a kitten crying.  It was 2007.  Lots of people were loosing their homes.  I called out to the kitten, it came to me.  I showed my husband.  We agreed to try to locate the owners later.  My neighbor informed us that the cat was abandoned due to a foreclosure.  We agreed to give the cat a home until an adoptive family could be found.  The cat had a huge abscess on his neck.  New Year’s Eve, I found myself in a vet clinic getting this poor animal help.  I explained we were considering adopting a child and we would care for the cat until a new home could be found.  I spent my New Year’s playing nurse with this cat, who was recovering from surgery.  Strangely enough, the kitten was born around the time, my son, who I lost at 18 weeks, should have been born.  My energy went into finding the cat a home.  A manger at the pet store agreed to adopt the cat.  I was explaining to my 2 years old that the kitten found a home.  She looked at me and said, “my cat!”

I called the manager at the pet store and apologized.  We kept the cat.  He was an all black cat with a white heart on his chest.  My baby’s name was Haven, who died at 18 weeks.  For weeks, we didn’t know if it was a boy or a girl.  I named him Haven because it was a unisex name.  I thought of him safely with his sister.  We named the cat Raven, who by the way absolutely flies through the house to snuggle me.  He is all muscle.  When he jumps on your lap, it’s like when Tigger pounces in Winnie the Pooh.  Trust me, he loves to walk all over you.

For months, I couldn’t get pregnant again.  My husband’s sperm count and quality was low.  We were told we need IVF-ICIS.  (They shoot the sperm into an egg.) The year was 2009, it was tough financial times.  My husband’s bank was sold.  The health insurance covered IVF because it was in a mandatory state for infertility coverage.  However, the pharmacy insurance came from a state without coverage.  It was getting hard to have childcare for Hope for doctor appointments.  I decided to return to work full time, because we needed to pay for the medication out of pocket.  I felt it would be quick and I would have another baby.  So, we finally paid $3000 for the medication through taxes.  Everything look so positive.  I ended up not pregnant.  I didn’t even have enough meds for another cycle.  My husband sperm count returned to normal.  I was crying so hard.  Months of work for no baby.  We began to try again on our own.

On our 10th wedding anniversary, I was very upset and angry.  I learned I was pregnant again.  I was terrified.  All the tests were normal.  At the 18 weeks ultra sound, a resident told me she needed the doctor to sign off on her work.  The doctor returned and told us that the baby had multiple birth defects.  The night mare happened again.  We had after years of genetic tests, conceived another baby with Campomelic Dysplasia named Addison. I rented in this pregnancy a dropper.  One morning, there was no heart beat.  I was induced the week before Thanksgiving.  I lost my job later that year.  Lucky for me, a previous employer hired me.  Avery’s blood in 2004 was flown to Germany to confirm her diagnosis.  The United States had open a lab.

The geneticist recommended we both get tested.  My test was negative.  It was thought that two recessive genes could cause Campomelic Dysplasia.  We decided to start trying in-home inseminations with donor sperm.  At this time, our health insurance was in another state without mandatory coverage.  We tried one cycle.  I began to notice blood on my bra.  I thought a milk duct infection due to Addison’s still birth.

The doctors discovered a lump in my breast.  It became clear that there was a great chance of breast cancer.  The Friday before Memorial Day, I was told I had breast cancer.  No insurance will cover the cost of fertility preservation.  Since it also could have been one of us making our eggs or sperm wrong, which is impossible to test for, I chose to pay for fertility preservation.  My husband’s blood work was lost.  On the day I had my lymph nodes removed for breast cancer, he had his blood drawn.  I started chemo.  The doctors agreed to let me try to use Lupron to save my ovaries.  It put me into medical menopause.  I had chemo and medical menopause.  I was able to work full time mostly.  Two weeks after chemo was started, the test results came back.  We were the first case in the world to be documented with one genetic carrier.  I could have used my eggs.  It was too late.

My mother died half way into chemo from natural causes.  I found her dead.  I brought a bib that said my mother is a breast cancer survivor.  I wanted to hold on to my dream of another baby.  In 10 months, I lost my baby, got diagnosis with breast cancer and lost my mother.  I would bring the bib to every cancer treatment.  I would cry into the bib.  Somehow someway, I was going to be a mother.  My relationship with my in-laws fell apart.  My sister-in-law declined my offer to be a surrogate mother, which I understood.  During Hope’s 5th birthday party, I learned she had a baby named Maddison.  The names sound so similar.  After breast cancer treatment, I began to have anxiety attacks.  The thought would just enter my head, my daughter died.  I also had flash backs of Addison’s death and my mother’s death.  An old obsession resurfaced.  Is there a God and afterlife.  Six months later, I tried to go back to fertility treatment.  I was told to wait for a year.

I started buying donor sperm through a bank and tried to inseminate myself at home.  Finally enough time elapsed, so I could return to fertility treatment.  The two IUI’s failed.  We tried 3 rounds of IVF.  My husband only accepted job offers with companies who we checked out their health insurance.  In March 2014, I failed my last IVF cycle with my eggs and donor sperm.  We had been looking into all options for egg donation.  Please note either egg or sperm donation is covered in any state.  I started looking into options out of state.  In my home state, it was $50,000.  I found an embryo donation program on the west coast that combined donor egg and donor sperm for embryo donation.  Please note this is not left over IVF embryos.  I began to fly out.  I had to keep everything hush, hush.  It was rumored that I was moving to the West Coast by friends and family.

The first cycle failed.  I tried a fresh cycle, which wasn’t easy.  IVF is hard for us.  We have to come up with excuses.  It was really hard to explain why I had to just pack up and fly out.  On August 25, 2015, I had gave birth to my daughter Joy.  She is a beautiful classic toddler.  Infertility was 13 years of my life.  I don’t miss the silent tears of a failed cycle.  I don’t miss googling if standing on my head will make me pregnant.  I don’t miss trying to stand on my head.

I stayed in the field that I loved.  I was able to return to working with children.  I have a specialization in substance abuse counseling.  My job is mom first.  I have been able to find jobs to work around my children’s schedules.

I don’t forgot my journey.  I try to be available to other families with rare diseases.  I tell my story.  Not for pity.  I tell my story in the hopes of someday, we find more cures for breast cancer, infertility and rare disease.  I want there to be a day that I hear Ms. C, Avery and Addison would have had better quality of life if they lived now.  I don’t want other couples to be the first in the world.  I am mostly agnostic now.  I have trying to catch up on building friendships and making my own family.  I accept my family and in-laws as they are.  I also believe I am the captain of my soul.  I made a promise to God that I would use my breast cancer status to improve life for those with infertility and rare disease.  I also try to advocate for cancer patients.  Most of all, I am mom first.

 

Feeling Stuck

Where does this family go after Joy’s successful birth?  My husband is a good co-parent.  The years of genetic tests, breast cancer, the loss of multiple pregnancies and his refusal to take care of his health problems has taken a toll on our marriage.  It is like there has been a silent divorce not only with him but his family as well.  I was always the prepared one with a plan.  Then our beloved daughter died named Addison died, breast cancer came, two beloved pets died and my mother all within 11 months of each other.  When the cancer drugs and I healed after all the treatment, I realized my mother, daughter and a few things died.  For years, I shut the windows and doors.  On my day off during the week, I would lie in bed the entire school day.  It was like living in paradise and awaking to a war torn country.  Another attempt at putting us back together failed.  I grow tired of this.  I loved you enough to take your name.  Your family sung me a million promises upon our union.  I have stood by you as we became the first documented case in medical history.

At this point, I am back to square one.  My own mother refused to take care of herself and her dementia.  Her clear moments prolonged her diagnosis.  Plus, she never was a real danger to herself until she fell.  It’s hard to see this person has grown this attitude that listening to me is an option.  I am brunt out from my mother almost 7 years later.  I may never have that relationship with him again.  The one that swept me off my feet and inspired me.  I sleep on a camper’s bed.  He has several food intolerances and allergies.  He will not comply with testing.  I should have made him sleep on the couch.  12 years later, I awake to my back hurting every day.  I have been suffering from insomnia.  I look at younger couples that wine and dinning each other.  It’s been 8 or 9 months since I got a hug.  I have no where to go.  Leaving is not an  option.  We co-parent.  I keep hitting this wall of utterly agitation.  I do have the love of my kids.  The dog loves me.  When I hit that wall.  The emptiness awakens… I feel myself grieving all that I promised myself as a girl.

I have been thinking of putting the move on hold.  There are all these huge bills left from un-paid maternity leave, several problems with our house and the embryo donation program.  I need something more than my addictive addicted siblings can give me.

The daycare center for Joy and I have settled our differences. Joy is waiting for a placement at a home daycare, which will save us serious money.  The crisis with the family dog has settled.  I was suppose to stop using Nicotine Gum, but I think I am going to lower the dose and wait for the stress to settle more.   Am I going to be happy in that town next door where Hope goes to school?  I don’t want to say there is no improvement between us as a couple.  However, it’s been quite a few weekends that I felt I bite my tongue.  My payroll was screwed up on job 2.  I only work a day a week to cover activities with the kids and spending money.  Some it I have been saving it because I learned my lesson the hard way with an old commission style job.  The screw up in paychecks screw up my chance to do some trainings in my career path, because in some human services jobs you are required to pay for your own trainings.  It feels like I am stuck in a power struggle between two programs at the hospital. Yesterday, I see myself needing to fight this outside the place.  I was extremely stressed.  I called because I need to know someone cares.  I got a “too busy.” I find myself craving adult friendship and a good hug.  I keep getting nothing.  Our souls do not speak.

This month started with a fight over money.  Things were tight.  Now they are tighter.  We are getting quotes and looking at our options. I am going back and fourth on career choices.  I know what I want.  I have half a map.   Dusting off the old plan to find friendships for myself.  I have found myself back to the original thought.  Save yourself Dame!  I did attempt to have him involved.  It went nowhere.  Done waiting for a super hero!  I can do this myself.

August Already? The Birthdays of The Rainbows

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

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

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

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

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.

Accepting Myself As Different: Upcoming Birthday

Over the weekend, I disclosed a major family secret to one of Joy’s godmothers about how my brother-in-law when my sister was pregnant became verbally abusive.  My sister got married and she accidentally became pregnant too soon.  My brother-in-law had all those major degrees in English with dreams of writing and directing movies.  He works as a security guard.  I had an awesome job as a secretary for a government organization when I was in college.  When I was 19 years old and diagnosis with thyroid cancer, I decided I didn’t want to become a nurse.  I decided on counseling as a career path.  When I went to grad school, I turned down a job offer for a full time secretary position.  I felt this was my calling in life.

I had an awesome mother who married a man with major mental health issues.  This man is my biological father.  As a teen, I read through some of his hospitalization paperwork.  He was diagnosis with Paranoid Personality Disorder.  He was extremely verbally abusive.  You got sick. You were against him.  He verbalized to us his children that we were never wanted.  I had both kidneys fail as an toddler.  I spent 2 or 3 months hospitalized in Boston.  I needed specialized schools to developmentally catch up. Later, it was discovered when I was a teenager that I had a learning disability.  I struggle with the written language.  I love writing.   I was placed a grade behind in school due to my illness.  I was older than the kids in my grade.  I hang out with the older kids.  I idolized my brother and sister who was 6 to 7 years older.  My mother was involved in a car accident when I was 13 years old.  She never walked right ever again.  It lead to a serious of other falls and she died with some horrible form of dementia when I was in cancer treatment.  I have felt different all my life.

My mother had a dream.  When I was 18 years old, my father wanted me out of the house.  My mother told him to leave.  I still had a year of high school.  I was an honor roll student.  My grades dropped so bad.  I graduated with a D in high school.  I was always concerned about my mother because we needed a restraining order against my father.  It was Alateen that saved me.  My grandparents were the alcoholics but I found a group of loving and accepting people.  I graduated and started working in my field.  Then our first daughter died of a rare disease.  I lost my job.  My brother and sister verbalized some horrible statements about her death.  Every month was a negative pregnancy test and a empty womb.  Then I give birth to my daughter Hope.  My brother and sister showed up at the end, when there was proof she was healthy.  Immediately, we had problems.  Worst of all, my brother had physically threaten someone, which I didn’t know.  I left my daughter Hope in this person’s care.  My gut was sending warning signals.  Others were telling me that I was over reacting.  I listened to others.  It was a major blow up.  I made the decision to end the relationship with my brother and sister for Hope’s sake.  They didn’t come to help, when I had breast cancer.  My mother died.  I never hear from them again.

A few years ago before my last cycle with my own eggs.  My aunt called to tell me my father died.  I have been searching for information on this off and on.  It’s hard when you are told you can’t have children with your eggs.  It’s own grieving process.  I stopped talking to others at church, in the neighborhood and at work.  I cried when others were not looking.  I was polite, but I barely spoke to others.  More relationships began to fall apart.  I use to lay in bed all day and cry.  I looked at my career and my life and I saw everything I didn’t get.  Some of the old thoughts started surfacing. I didn’t want to celebrate my birthday anymore.  When I turned 40, my last cycle with my eggs failed.  We had one affordable option across the country known as embryo donation.  It took months of financial saving for this.  Joy was not the typical embryo donation.  The program uses both egg and sperm donation.

40 was tough, I have no family outside of this house.  My sister sends all our birthday cards late on purpose.  She has never seen Joy, but she sent gifts at Christmas.  Both my girls were born in August.  I was trying to contact my friend about the embryo donation program.  He committed suicide two weeks before my 40th  birthday.  One of the ways, I survived growing up was to stay very close to the family pets.  So, two of my cats died about two weeks apart around my birthday.  I feel the emptiness of my siblings not here.  On the maternity ward, everyone had visitors.  I had Ken and my daughter.  Easter is this weekend, I hear people saying I have 20 family members coming.  The four of us are going to a restaurant for branch.  It’s my birthday weekend and a lot of people will not remember.  My brother and sister, whom I idolized as a child will not be found.  My heart is broken.

Over the past few years, I am trying to move from crying about what I don’t have.  I am focusing on my children.  I go to mediation class.  I don’t tell people my life story.  I tell bits and pieces to see if I am accepted.  Monday is my birthday.  I miss my friend who died.  I miss my mother, brother and sister.  There is this whole.  I had beliefs my life would be so different when I grew up.  I am connecting with other through meditation and spirituality classes.  I said to Hope about a Saturday daddies book baby group.  She is young.  She told me to join a new mother’s group.   I am worried I would not be accepted.

At my age, I done forcing others to accept me.  I am the mother of two angels, who died from a horrible rare disease called campomelic dysplasia. I am a infertility survivor.  I survived recurrent pregnancy loss, male infertility and female infertility.   I am a young breast cancer survivor.  I am turning 42 years old.  I don’t have a big family.  Everything I had is earned.   I get intense sadness especially during my birthday.  I am getting to that point.  I am different.  I am special because in the words of others with rare disease, I am a rare mother.  I deserve to be treasured.  I have been crying for weeks about my birthday.  I hope I can get to that place of acceptance, gratitude for what I have and see myself as a beautiful person.  Amen from the Agnostic!