16 Candles For Rare Disease Day This Year!

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

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

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

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

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

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

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

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.

Remembering Mary: A Mentor

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

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

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

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

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

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

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

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

These Past Few Months…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

Like The Song: Summer Has Been Cruel

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!