Brief Follow Up To Last Blog:

I totally forgot to mention that my husband will have his job after the bank merger.  It’s a tough place for him because people did loose their jobs and others have it.  I sending prayers to those workers without a job.  Ironically, once again this family was blessed.  Remember we are the first documented case of dominantly carrying this rare disease without having it ourselves.  Two children died of that disease.  I take those blessings with serious grace.  I am aware some families were not so lucky.  I am sending prayers to them.

I just got the occupational therapy report on Joy.  Again, it was said attentional issues below age level.  Some issues with fine motor skills.  Most days, it feels like midnight by 10AM.  I am glad that I continue to seek help now instead of kindergarten.  In short, TRUST YOUR GUT INSTINCT ELLEN!  Every day, I grow better on my path to recovery from co-dependency.  Whatever journey you are on with whatever challenges, may all of you be blessed as well!

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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.

Thoughts:

The trip went okay.  Our cat has a seizure disorder so medication needs to be given on time.  I had an argument with my husband the night before.  He closed his bedroom door and went to bed.  I just couldn’t sleep.  The trip had awoken several emotions in me.  Between the grief of the death of daughter going on nine years this year and the man who was my biological father, it was an emotional roller coaster.

I had done everything in my power to make sure the cat seizure medication was done on time.  I have experience a lot of lost.

My own mother was hit by car and the police failed to notify me.  I was 13 years old and home alone.  We didn’t have cell phones in the day.  It was 11PM, when finally everyone stopped passing the responsibility around and I was told she was hit by a car.  My mother was never late.  She would never leave me alone.  I walked the streets looking for her.  I had gone to a Halloween Party instead of our usual Friday night ritual of going out to eat and walking over to grocery shop.  She was hit crossing the street.  I freaked out, hit redial by accident and ending up calling a friend’s house.  The mother asked me if I was okay.  I was 13 years old.  I didn’t know what to do so I told her what happened.  She came and got me.  For many years, I blamed myself.  After all if I was there, maybe I could have pushed her out of the way of the car.  She never walked the same.  Over the years, she could barely walk.  She died at 72.

Let’s add the grief of loosing two children due to a rare disease.  I am trying to grasp the concept of the Serenity Prayer.  My inlaws were suppose to just drop off the cat at the kennel and they were suppose to medicate the cat.  I am presuming because the cat was in their kennel not ours that they were an hour late because they drove home to get their kennel.  This is the way communication goes.   Since my mother-in-law was diagnosed with a non-cancerous brain tumor about 10 years ago.  I can’t talk to them directly.   All communication needs to go through my husband.  I freaked out about the cat.  I called at 10AM when we were down the street from the amusement park.  He wasn’t there.  Today we have cell phones, so I got the word that they were almost there.  I was really angry.  I had to push it a side because here was my dream about to come true.  We tend to think these are going to be big moments.  I was rushing in for the bathroom upon entry.  Laughing!

Joy had the best time.  Hope was bored.  At 4PM, Joy had no nap.  She was laying on ground in a line.  We got tickets for next year because 6 of the rides were out.  I almost said did you see my blog about no more trips?  It had it’s touching moments.  I had an ornament made with all the names of the babies that I lost on it.

The next day, we got up and it was raining.  We weren’t going up any mountains like I promised the oldest.  Joy had quite the melt down at the mall.  I came home and I had planned to take my husband to Albany, New York for his 50th birthday this year.   I canceled it. It was a third of the cost of this trip to have the dog and the cat at a kennel.  Literally, no one wanted to pet sit for a seizing cat.  My own vet was telling me that I was going to get charged an extra $50 if the cat gave them any fight for an extra person.  Raven took his meds no fight.  The other kennel loved him.  This cat is just this loveable character like Tiger from Winnie the Pooh.  They were amazed how this blind cat could figure out his surroundings.  All the pets came back in good health.  No issues.  Meanwhile last week, my dog went to the vet for a routine exam.  It took four staff members to hold down the beagle for blood.  Not because he was aggressive.  He wanted to play with them.

I have given it more thought.  I have redecided to go to a more local place for my husband’s birthday that is in a 40 mile radius of the house.  When he turned 40, I surprised him and took him to New Hampshire for a weekend get away.  He is a December baby.  There was a blizzard one way and another blizzard on the way back.  Hope was 3 at the time and we were scared the entire way.  I only had that Saturday off.  We get home in one piece.  The next day, we went to daycare.  It was icy.  I picked up Hope to carry her in because I didn’t want her to fall.  I slipped banged my knee and hurt my lower back.  I was screaming in pain.  Not one soul heard me cry for help.  What stopped me was Hope decided she was going to get me tissue.  I spent Christmas on crutches that year.  It was so icy.  I gave up on them.  Never will I wear these cool dress boots.  The uglier the better boots are!   We are keeping it local, so that way I have control of the cat’s medication.  I think I need a to find a sponsor for this co-dependent issue I have.

It’s not that I hate him.  I find I am angry about a lot of past events.  I struggle with holding this secret that the psychologist had to tell me about him having high functioning autism.  It isn’t I couldn’t love someone with autism, because I could.  I don’t feel he entered the marriage quite telling me everything.  Our emotional divorce has gone on long enough.  I am no angel either.  I know he is a good person.  How many more times does someone need to request marriage therapy?  From my breast cancer survivorship and as a bereaved mother, I am telling you life is too short to be so miserable.  It isn’t enough to have the basics, I want an adult relationship with love both ways.  I am not looking for a supermodel or the perfect rich man just someone who…

I haven’t figured that one yet.  Anyways, it’s going to cost me more money.  It’s what feels right for me to stay local verses 2 and half hours away.  I literally had the biggest anxiety attack when the cat was over an hour late for his seizure medication.  It kind of points me to explore my need to control what I can’t.  Baseline: Serenity Prayer.  I can only control myself.  I need to explore what a healthy relationship is as well.

Rambling on.  The sentence should read I am not looking for a supermodel or the perfect rich me just my soulmate.  Someone I can connect to.  Not someone who is always going to agree with me.  Someone who loves me.

Another Goal Done? The Bucket List After Cancer Treatment

Hope was just 4 years old.  I was in my second trimester with Addison and we went to a local children’s amusement park.  I ran into one of my old co-worker at the time.  This is the type you do not speak to.  After I witnessed my first ever human die, which was my daughter Avery, he decided to bring his newborn twins in on my original due date, while I was at work.  So years later, I didn’t go near him People never understood that I suffered from flash backs of Avery’s death.  The pain of it all… Here it was my brain was trying to heal by repeating processing her moments of death.  All these happy couples with newborns couldn’t get, I couldn’t hold or look at their babies.  It had nothing to do with them, but the fact that I was grieving.

I was very careful not to get on any of the rides at the park since I was pregnant with Addison.  It would be the last time Hope would ever go in her early childhood.  It was Columbus Day weekend and I was hoping for a miracle.

The memory…..  Sweet Addison….  The doctors said it would never happen again.  Her sister Avery died of Campomelic Dysplasia, a rare disease.  A few weeks later, I was heart broken looking at the ultra sound screen.  Addison looked like Avery.  It was October 30th, the day before Halloween.  Our conversation to the hospital that day before learning the news was filled with dreams.  I pointed out a mini van at a used dealership.  I was going to have a dog too.  It was like watching the Titanic go down.  A week before Thanksgiving, Addison had died in utero.  In 10 months, I lost my baby, job, got a job, got diagnosis with breast cancer and buried my mother.

When I was in cancer treatment overlooking the Charles River in Boston, I had a bucket list.  I was a pretty active cancer patient.  We did Girl Scouts. I worked 32 hours per week.  I helped my kindergartener through homework.  I had what I call Charles River dreams of after cancer treatment.  Please pass me my magic wand!  I was going to the happy maternity ward!  When the baby was old enough, we were going back to the amusement park.  It was 2009.  In 2015, my dreams came true.  I had another rainbow.

May I say this affectionately?  My daughter Joy, the second rainbow has attentional issues.  I say this with gratitude for her life.  She appears to have a sensory disorder and she is a thrill seeker.  It’s like having someone on suicide watch 24/7.  If one item is not right, she finds it.    Joy is a bolting hazard.  I suffer from nerve damage on my left arm due to cancer treatment.  She can never be left alone.  It’s a struggle to get her in the shopping cart.  She unbuckles herself and stands up.  I promised the girls this trip to NH.  Again the leash part to back pack harness is missing again.  This time, I brought handcuffs.  Not real ones, They are actually called wrist links for toddlers.  “You are only going if you wear these at all times.” I tell her.  I am getting an understanding Joy is in constant Fight or Flight due to the sensory overload.

This trip has made me consider stopping the overnights.  Today, the dog needed to be dropped off.  We have a cat with seizures now.  Every pet sitter said no.  I only found a kennel.  They open at 9AM.  It’s a three hour drive.  Once again, we have to beg our in-laws, so we can leave at 6AM.  The kennel says come in and fill out a packet.  I already see the Joy scene in my head.   I drove by to drop off the paperwork.  I hand write out the feeding and medication instructions.  They closed until 5PM.  My husband is confirming with my inlaws.  I am timing the seizure medication on the cat.  I get there at 5 to review the paperwork.  The time I pick is not good.  These one night trips are just not worth it anymore.

I am getting my dream to return to the amusement park after a day’s worth of phone calls to find someone.  Our vet wanted to charge us an extra $50 if another tech needed to come in.  The hospital our cat was admitted wanted $212 for medical boarding.  Here I am packing for everyone just saying this isn’t worth it anymore.

I have also been looking at my co-dependency issues more.  I am not as close to my husband anymore.  I was going to try to take him to Albany NY for his birthday.  My village in life is who I pay for.  I had a huge argument with my teen ager about cleaning her room before the grandparents come over.  I am just not enjoying myself on this mini gateways anymore.  A promise is a promise.  I pulled my oldest aside and said this isn’t worth the energy that goes into making these trips happen anymore.  Now, I am on the mercy of people who have canceled before.  My oldest, I am planning to take to a mountain named after her school mascot.  Here I am seeing myself rush around a mountain to get through traffic to get to two animals located 15 miles apart from one another.  I can’t do this anymore.  Disney World is in stone next summer.  I done with this.

I also have a lot of sad memories of NH due to my bio-father.  The man did what he could to tell me that I wasn’t worth it.  Since his death, I have worried if he was buried or not.  Last summer, I woke up and discovered he was buried thanks to the internet an hour away from where we are going.  It’s been an emotional day of should I go and say good bye.  I have thought this over.  It’s not the right time for me.  It’s going to be an emotional roller coaster to just get through the gates of the amusement park.  I have been overwhelmed most of the day today.  It needs to be at a time where I am with someone to console me. I need someone to undo the message that I don’t matter.   If I went this weekend, I would be driving the only car and leaving the family at the hotel.  Not a good combination.  I let that one go.

This weekend, let’s honor the memory of Baby Addison.  She never got a turn.  How much I loved my angels!  Leave unfinish biofather business for another day.  Let the next 12 hours be a moving moment to remember Addison and fun for Joy and Hope!

Embracing Rare As A Inward Beauty:

Out of the billions of people who live in the world, my family was the first documented family of dominantly carrying this horrible rare disease called Campomelic Dysplasia.  As a teen my mom warned me of teen pregnancy, I thought it was a given that if you behaved so to speak that children would just come and live happily ever after.  When I decided it was time for my husband and I to have children, I had a pre-pregnancy glow.  Everything had to be perfect.  After all, a little prince or princess was sure to come.

On November 14th, 2003, I lost my innocence about pregnancy.  Here we were compilating if we should ask if it was a boy or a girl.  The ultra-sound tech was silent almost cold.  I was on top of the world.  My husband and I had not gone on a honey moon after we married.  Five years later, I had the baby I always wanted and we had plane tickets to London, England for a honeymoon the following day.  My world was shattered.  Fate choose us.  The doctor pulled me into the room.  I am still asking well is it a boy or girl.  She told me the ultra sound showed multiple birth defects.  They didn’t think I would go to term.  They didn’t think the baby would survive birth.  A part of me died on the spot, I arose and I was born a mother of child with a rare disease.

We went through all the genetic testing and we went to London England.  In the early morning hours of this devastating news, I made the argument to my husband, “If the baby is to die, let’s show this baby the world!” We went to London.  I fell on my knees at Westminster Abbey to all the great royals and I begged for my child’s life.  Avery was born late February unexpectantly since she was due in April.  She died a day later in the arms of her parents.

Afterwards we talked about the hell it would be if it ever happened again.  We had Hope our oldest in 2005.  She was perfect in every way.  Hope was a name we were going to use for Avery.  The doctors had difficulty figuring out Avery’s gender.  Neither of the names that I choose were the right name for this child.  I picked Avery instead because it was a unisex name.  It wasn’t that popular in 2004.  Both my daughters Hope and Joy have friends named Avery.  I see it as a spirit of Avery finding these girls to add friendships to her sisters’ lives.  One of Hope’s friends has sisters.  One named Avery and the other Addison.

We went on to have try again for another child.  I had repeated late miscarriages.  People had opinions not always the path I choose.  I am remembering my own sister telling me if I miscarried Hope to be glad because after all we wouldn’t want genetically inferior babies.  She told me to embrace my losses because it was Mother Nature’s way of making sure only the genetically pure survived.  My mother FYI repeatedly stood up for me.  She warned us against such statements.  My brother told me that I shouldn’t cry because I was told by the doctors.

I lost many jobs, friends and social statuses due to my convictions.  Avery was my child.  This was my tragedy.  None of my losses are to be used to address social issues.  It was up to my husband and I to decide as her parents the best course of action.  After so many losses, people get inpatient.  COME ON JUST BE GRATEFUL FOR HOPE!  GO ADOPT!

Often in life, we have our own choices.  As a society, we need to work on accepting others have choices.  It is their choice.

I went to work full time.  I could not find childcare for my daughter Hope so I could presued infertility treatment.  The genetics once again chopped my losses into statistics.  It look like just pure bad luck.  Our health insurance would not pay for the medications. We live in a mandatory state for infertility insurance the procedure was covered.  However it was a bad economy at the time and the insurance policy for pharmacy meds was not in state with laws about fertility coverage.  There was the legal loop hole.  I switched jobs and we saved.  We finally had the $5000 for the medication for one cycle.  I didn’t get pregnant and my RE looked at my meds and told me there was not enough meds for another cycle.  My husband’s sperm count got better.  We were told to keep trying on our own.

In July of 2009, just a few days after our 10th wedding anniversary, the pregnancy test was positive.  Sadly October 30th, we broke medical history.  The one event which could never happen again did.  Our child Addison had the same rare disease and she was expected to die.  Addison’s nick name was Momma’s Birthday Gift.  She was due a few days before my own birthday.  A week before Thanksgiving, I was induced.  She had no heart beat.  I held her cold body that day. Here I was vaginal giving birth, when all I knew was a C-section.  Six months later the blood on my bra was a breast cancer tumor.  A week after chemo, we learned our family had broken medical history and there was a dominant carrier.

It was not an easy switch to go from active in fertility treatment to cancer treatment.  I was scared out of mind.  In the early days of my cancer treatment, I thought it was a sign from God that I should die with my daughter Addison.  In those irrational days, I felt like a failure as a human being.  Then through divine intervention, I had a great dream.  I was at Plymouth planation having a picnic with all my babies (including those I lost.)  The sky was blue and I felt so peaceful.  Then the nightmare began.  A knight out of no where began to attack only me.  I ran into a cave.  This knight had no mercy.  When I was defensiveless and fearing my own death, the knight reveal it was my paternal grandmother.  She grabbed me by the chest, “You don’t really want to die.” She threw me the sword.  It’s laughable because I am not athletic at all.  I grabbed the sword.  I was ready to fight.   She called me by my real name, “Get in there Maryellen and fight!  It will kill you!  Let me care for the babies.” Just like that I grabbed the sword and I was ready.  It was a horrible noise coming for me.  I can’t describe it in words.  I knew I was surrounded.  I was convinced I could win.

I survived with a kindergartener, working full time and breast cancer treatment.  My mother died half way through chemo.  In 10 months, my baby was dead.  Beloved pets died. I had to switch jobs fearing the loss of another job and my mother died.  I was in cancer treatment with conviction, “someday, I am going to the happy maternity ward.” I carried this bib that said my mother is a breast cancer survivor to keep me inspired.

I have been reaching to other bereaved parents.  I am not going to lie.  After cancer treatment, the pain of the losses taunted me.  I had my convictions.  There is another child and I was going to find her or him.  I stopped talking to others.  I became the queen of small talk.  When I was allowed into infertility treatment again, I shallowed the pain of negative pregnancy tests.  Hope cried every time some one had a baby or became a big sister.

Finally, I was told by the local infertility treatment would not continue.  I internalized all these failures.  I stopped caring and cleaning (laughing).  My days off were spent looking for answers to bring that other child home.  In 2013, I boarded a plane to California.  The first cycle failed during a family vacation.  I spoke to no one but a trusted few.  On March 28th, 2015, I got to announce a new pregnancy.  Joy is three years old now.  I have never felt quite right in my skin.  I feel different.  Does it need to be ugly different? There was a different disaster brewing at home.  All of sudden in the mist of this miracle, I was staying up all night to scrub walls and trying to kill off the black mold.  Finally this year, we have not seen signs of mold.  (Cross your fingers.  The basement has flooded a few times this summer.) We are aware of the other disaster.  My husband’s uncontrollable drinking.  Sometimes the answer is deeper than you want.  The answer is not just the object of desire.

I have spent these last three years trying to rebuild Camelot.  My husband has been sober a year now.  The effects of all these battles have other losses.  I went back to a support group.  I am at a fork in my own road of rebuilding.  I hate being the mother of the first documented case.  The loneliness is crippling.  The anger can be strong.  The sadness can pull you beyond the pit of despair.  I saw myself and my existence as ugly.  My oldest suffers from social anxiety and puberty.  My youngest has a sensory disorder, which no one in the medical community acknowledges.  There is the work/home balance which I struggle with.  Life is not a perfect condition.

I do have a sense of humor.  Somedays, I say in my tour guide voice.  This is the famous tiny house of the C family.  The mother didn’t believe in housework.  Over here, they threw everything in a pile, which is famous for the shape and texture of making not caring into sculpture artwork of hating house work.

In my fork, I am in this place.  This one all of me that screams I am ugly.  I lost multiple pregnancies and the last thing I want to do is be a “normal” member of society.  I made a promise to a God that now I am agnostic and I question.  It was a promise to my angel babies.  I could have shut down and let death take me at the end.  In reflection, my soul died in 2009 to 2011.  It flatlined.  On August 25th, 2015, I became aware of what my pain had caused.  I owe both my children the biggest apology.  I can no longer travel this road unattached to society.  For three years, I have put this house and each member back together.  This time, I need to embrace myself as a rare beautiful mother, grieve my losses and live life to the fullest with interactions with others.

The Lemons and Lemonade of Summer: Now Fall

Unofficially, summer ends on Labor Day.  According to the planet, we have a few more weeks.  This summer was way better than last year.   (Can you tell I started this one a few weeks ago.  It’s now Fall.) There was the lemons, all the plain accidents amongst family members that everyone has recover from.  No need to recap.

August is the rainbow parade of birthdays for our family.  Hope, my oldest is an teen ager now.  Joy had her first dry day of potty training on her big sister’s birthday.   She is not perfect.  She is having an accident a day. A few days there are none. I thought, I brought both home yesterday in infant carriers.  It’s a new school year and with it a new school year resolution.  So far, we have been arriving at the school with 10 extra minutes.  Her anxiety was high.  The oldest Hope will be in high school next year.

It seemed like the summer of health issues for the fur babies too.  We are facing a real life threatening crisis with our cat Raven.  The week of my youngest’s third birthday, I got a hysterical facetime message from my oldest Hope that something was wrong with the cat.  I watch his body flip around on the floor.  Hope was crying so hard.  I said to Hope it was either a seizure or a stroke.  I ended up leaving work.  A neighbor came over to be with Hope.  His vet said it was a seizure.  We ruled out poisoning.  We had to drive him to a local 24 hour hospital.

The vet bills have been high since the ferret died in May.  They told me he could have an MRI to rule out brain cancer.  I kept saying this cat is only seven.  I was corrected he was closer to 10.  Remember Raven is the cat, I found after my Christmas miscarriage.  An MRI is between $2,000 to $3,000.  The local 24 hour hospital had no vet neurologist.  The cat had another seizure.  An MRI seemed too expensive.   We decided to drive him to a veterinary hospital in Boston with a neurologist.  He came home the night before Joy’s 3rd birthday and he was blind.  I set up Joy’s play n pack and slept with one eye open.  The moment she woke up she said, “Raven is home for my birthday, momma.”  The other option was to try a combination of medication.  His symptoms also were common for a type of infection.  I talked it out with a few people.  We have to wait 6 months to see if he has another seizure.  If he does, it may be brain cancer and at some point the seizure medication will fail.  

Raven, a month later, is still blind.  Over the passing week, he has full range of the house now.  He navigates it well.  We are tapering his meds and hoping for the best.  The seizure med is for life.  The blindness will never go away.

Joy completed Early Intervention the day before her birthday.  My husband and I have gone back and forth about whether the school system should be involved.  We are rolling the dice and not involving the school system.   The Early Intervention had loaned her a compression vest to address her sensory issues.  We had a lot of issues between what Early Intervention had believed about the company on Joy’s last day.  She handed the loaner vest to the occupational therapist on her last day. It was a big moment for Little Joy.  Bless Joy! Thankfully, I placed the order before the occupational therapist suggested it.  It was coming from a foreign country, which held up the delivery.  We resolved the issues for a long time I thought I ordered the wrong one from the wrong company.   The president of the company was kind enough to call me back.  We had a learning moment for everyone.

It was a long wait for Joy for one week. and you could see her tension building.  First, her cat is on his death bed for all we know.  Second, it was her third birthday. (FYI: Thankfully, because she is three, she did not connect the idea that Raven was so ill before her birthday. I pulled the oldest side and told her not to connect the dots for Joy.  With her toddler innocence, she loved her birthday.  Raven’s illness was a separate incident. I peeled my eyes open from the lack of sleep and we had a good time. ) Third, the daycare was closed for vacation.  We kept to her sensory plan.  Joy surprised me.   I sent a lot of emails about obtaining her vest. It came that Friday of Labor Day weekend.  I took Labor Day weekend off.  We had the best time on day trips.

Hope had anxiety going into her last year of middle school.  Driving the cat from vet to vet costed her time on her summer reading and the worksheet packet.  Somehow, the outfits were brought. The school supplies was gathered.  Her hair got cut.  The reading packet was done late that night.  She started school the week before Labor Day as the school system in the next town over signed a law school is starting earlier.

I looked into possibly starting my own business all summer.  It’s a continuing to be a  working process project.  We are still waiting for the referral for Joy to be written for her to see an occupational therapist.  It’s been like pulling teeth.  The school system is not going to offer me something that doesn’t interfere with my work schedule.   I can’t afford lost work at this point anymore.   I am waiting to see how much we are going to owe on this new occupational therapy practice.  We owe up to $2,000 dollars on a deductible.

I got so tired looking for new homes in the town Hope goes to school in.  I was being turned down by my husband before ever seeing a house that I stopped asking.  It happened like I thought.  I put my back into fixing the house up to put it up for sale and he has thought of every excuse in the book.  In good news, no mold returned.  It took two years for us to clean the house to this point.  I also moved the family into the 21st century and got a dishwasher.    If there is ever a next time, I am demanding a home loan and professionals to help.  I actually relearned how co-dependent I was.  My husband learned how important it is to stay sober.  He has been for over a year now.

As for us, we function well as co-parents.  We are emotionally divorced.  I do love him just not in the same way.  Somedays, I grieve what was and what is our lives.  About two years after the breast cancer and the death of Addison, the drift started.  Other than having a loving guy with a twinkle in his eye for me, there is nothing missing in my life.   No one is being abused.  Next year in July, it will be 20 years.  I have been continuing to have a night out for myself with various hobby groups.  I continue to grow socially after being withdrawn for so long.  Sadly, the one problem in the universe I said we would never have, we do.  We turned into roommates.

Right before breast cancer surgery number 2, I arranged for the reverend who married us to come to the house to renew our wedding vows.  I knew we were about to find out who the carrier of the rare disease that killed our children was.  I wanted him to know that I would marry him again.  It’s not forever, but we are.  I continue to be a member of a support group and live my life, because I got the message after surviving breast cancer.  Life is too short.

We also did some wonderful donations in honor of our children recently.  The city had a Halloween costume drive for low income residents.  Unfortunately, all of Hope’s was inherited by Joy.  I brought some used ones.  The woman was kind enough to include more when I told her about our project.  There was a few Joy wouldn’t use.  I think it ended up being a hand full of costumes donated.  They plan to name one of the collection monsters Ariel (The name Joy picked and display the names  In Memorial to Avery, Addison and Haven Crompton.)

Sadly, an older child died from the Campomelic Dysplasia group.  Some of the money from the angel fund (the fund of collecting change donated in memory of our children) went to her funeral.  I cried a lot last week.  I am heartbroken for the family.  Then, the doggie daycare did a drive for the recent hurricane victims so items were sent there.

We ended up staying home this weekend.  I got a cold with multiple asthma attacks so I couldn’t finish my work day yesterday.  I slept most of yesterday.  We were suppose to go to a medieval fair for Hope’s history project.  My husband has been concerned about his bank being sold to another.  In the mist of all of this, I felt better enough for a local activity a touch a truck. (Joy loves school buses.  They didn’t have one.  She loved the trucks. )

It all connected to rare disease.  I did not speak of my concern for years.   I sat on this for a long time.   In the world of infertility, breast cancer and rare disease, it is all connected.  I am thinking of my wording here.  Neither husband or oldest child has access to this site.

There are developmental milestones as we women experience in puberty to get ready to bear children.  Hope is 13 years old.  We have had the conversation about birth control and going to the doctor’s prior to this.  I reached my milestone at the age of 11.  Hope it never happened.  My husband and I began to panic that perhaps this pointed to Hope being infertile.  Remember, the medical community is just guessing it will never effect Hope that she is a carrier of this rare disease.  They believe it is isolated to just our generation.  Hope reached that developmental milestone today.  When I did, I was spoken to about never getting pregnant until I was old enough by my mom.  It’s really hurt when I needed a fertility clinic.  I am not putting my mother on the spot.  My mother had every right to be concerned. There are a lot of family members, who had teen pregnancy.  I congratulated Hope for reaching that milestone.  I did not revisit the issue of birth control and seeing the doctor before having a baby to get updated about the rare disease.  I wasn’t ever ready to be apart of the first documented family.  I did not lecture how we were for the first documented case of carrying a fatal rare disease.  Not today, no need to damage another generation about the beauty of her body.  I hope the doctors are right.  Campomelic Dysplasia testing is in the US now.  I wish for Hope a life with wonderful career in whatever makes her happy, a long close relationship with that sister rainbow, for her to find love that lasts a lifetime, a child when she wishes with no fertility center needed and long living parents to drive her nuts!  After starting this post, 3 weeks later it is done! Amen from the agnostic mother of Hope and Joy!

As it said, “It’s About Progress Not Perfection.”

It is not possible to get to perfect in the living.  I think sometimes, I have extremely high expectations for the summer, my birthday, my daughters’ birthday and Christmas.  We were asked to pick vacation days.   I was told someone didn’t have enough. I told my boss my family had no plans for a vacation that I was going to take days off.   It was not my intention for us to get so sick driving to Florida.  It was not my intention to have to deal with the disaster that followed us home. The bathroom contractor was the worst, but he redid the bathroom the cheapest.  There was a lot of me fixing what he failed to do.  Now, I see why people a full year of college tuition to get their bathroom done by a big company.  It’s done now.

I have been working towards selling this house and my spouse doesn’t feel the same.  The housing market is crazy.  Either way the bathroom needed to be redone, because of mold problems.  The crazy part is our property value is lower than the next town over.  I would end up with a back to 70’s bathroom again and I would need to come up with a hundred thousand more.  I am in a holding pattern here.  I got tired of finding a house only for him to think of some excuse not to look at it.  I stopped looking.

Joy, my youngest, finally came up on the Early Intervention waiting list for services.  They set her up with a counselor (more specialized than me.) Joy continued to bolt from the area on the counselor without me present.  It screened out a behavioral issue.

It’s been the summer of boo boo’s for this family.  I got some type of mouth open sore/laryngitis infection, which was caused by a virus.  The next day, I had an odd interaction with two cars in a parking lot.  I became concerned when the drivers appeared to be talking around my car.  I was walking in the distance and missed a curve.  I fell on both knees.  At first, it looked like scraped knees.  We went through a heat wave so I wore pants.  Fourth of July, I was at work.  Both scrapes were hot to the touch.  The pain hurt.  I poured some alcohol on it.  The next night, I was in a fetal position in tears.  It got worst.  I covered the area with water proof bandages to take Joy to swim.  It wasn’t cellulitis.  They were infected.  I was given prescription strength meds.  The following week, my knees were swelling  at night.  I was going to get my knees X-rayed.  My oldest daughter had her last Art show at the youth camp.  They decided to move her up to the teen camp for the last session.

Joy was scheduled to stay home with my husband that day.  She screams, yells and bolts at these types of events that Hope has.  Early Intervention was able to get us an occupational therapist.  I came home to just introduce myself.  My husband went to the bathroom.  He did not know Joy had stuck her finger on the hinge.  He closed the door.  All I heard was her screaming.  I saw her finger nail had fallen off.   I took her kicking and screaming to the doctors.  She wouldn’t let them X-ray it.  The finger was put in a cast all weekend, because they couldn’t tell what happened.  All I felt was so sad for Joy  and I felt extremely embarrassed this all happened.  People have told me this is a common accident with toddlers.

Joy saw an orthopedic doctor.  The cast was taken off, but Joy has not been able to go swimming.  Not that we intended to get Joy injured around our anniversary.   I found I have a lot of anger towards him even through he isn’t drinking.  I am trying to work through it.   It happened and it took the edge off it.  We still argue a lot.  We started not being close about almost 5 years ago, when he started drinking very heavy.  We are better because he is not drinking.  I still work the weekends to work the opposite time as him and save on child care.

I never got my knees X-rayed.  I was still having swelling issues sometimes at night.  I wanted to take Joy to the trampoline park as a treat.  How hard most that be to be two, everyone at your daycare is swimming and you can’t.  Hope my oldest said she would help.  I didn’t know if I could chase after Joy if she bolted.  The occupational activities are relaxing her big time.

We get to the trampoline park.  I took that Saturday off because we were going to take the kids to Maine to this famous zoo over the border.  Hope attempted some type of flip.  I only heard her screaming.  She was able to get up, but I didn’t like the way she told me she couldn’t feel her legs for awhile after falling.  She was crying so hard because the following week was the summer camp play with several dance moves.  It ends up she pulled a muscle in her back.  The play went well at camp, but I could tell she was stiff. We picked a boat tour with less walking in Maine.  The company guided the boat around a thunder storm.  I saw a rainbow appear and began to cry.  It has been a better summer than last year.  I am done with the home remodeling projects.  I am working both jobs still.  I am making sure I don’t get burnt out.

Hope is having a few friends over for diner next week for her birthday.  The girls are trading out their birthday party for overnight at a water resort.  I get tired of all the major work to around the house to have a birthday that no one attends.  We got tickets to see a Red Panda in person for Hope.  Our friends are going to take Joy around the zoo, while we visit the Red Pandas in person.  I undecided about what to do with Joy on her birthday.  Part of it is, we need to see where Hope is at with her back.  Joy wants to go to the trampoline park and out for burgers.  Somedays, she says she wants to go to the movies.  We will ask her more when we get closer to the date.

I have been looking into the possibility of starting my own business.  It’s really tough to be the only person responsible for picking up and dropping off the kids.   I have been developing a plan where I gradually work for myself and decrease working for the other two jobs.  I found the perfect company to make that happen.  All of sudden, it wasn’t going to be so expensive anymore.  Well, I brought items.  Last week, I ran around to get my hair done for a professional photo.  I went to apply and they weren’t accepting applicants anymore.

My two days off have been about Joy getting services for her sensory issues through Early Intervention and doctor appointments.  I still have to take on the school system for not evulating Joy.  I also need arrange for Joy to continue to have occupational therapy.  Joy is going to daycare 4 days a week to help her more next fall.  It has not been restful for me.  My days off are about cleaning the house for Early Intervention to come over. I am considering taking Labor Day weekend off to spend with the girls going beach to beach.  It’s not perfect.  It’s better.

Sleepless

I have been very sleepless lately.  The house has settle down.  I finally got the bathroom finished after the contractor was dragging on for weeks.  The sink was leaking repeatedly.  The contractor kept saying I was the problem for that.  I learned a tough lesson.  Never hire a friend of a friend.  After the sink yet leaked again for the 4th time, I hired a plumber.   How was I the problem, when the contractor installed the drain wrong?   The contractor was a friend of a friend who did the bare minimum.  There is no legal recourse for him.

On top of it all, the last person we had contact with from our wedding failed to show to paint the bathroom.  He said he was coming to paint the bathroom.  I got the kids out for the day.  He confirmed with me.  We left the key out.  He didn’t show.  I called him up and he has his wife answer the phone.  I am not falling for this.  He had no explanation.  He wasn’t paid.  We owe him for the exhaust fan in the bathroom, which I have repeatedly ask him to show up so I could pay him.

The summary is the bathroom was a disaster.  It was finished the Friday before Memorial Day.   It looks great now! The contractor did not chalk the shower surround.  I figured it out watching water collect around the seam.  For two hours, I took cotton balls to dry the area.  The actual chalking application took 10 minutes to apply.  Thanks to the new drop in child care center, I didn’t need to stay up all night.  It’s painted.  The only left item of business is the new tooth brush holder keeps falling off the wall due to no studs.  I have to repair the marks from trying to anchor it.  I am going to use industrial strength Velcro at this point.

There has been arguing between my significant other and I on several issues.  Our oldest couldn’t go to Disney World with her camp.  We had these trips to the West Coast to get pregnant.  It was promised to her that if any other activity went to Disney World she would go.  The dance school warned us about a year ago.  We just returned from a Florida driving vacation, when the down payment of $500 was due.  My oldest bent her iPhone making it forever unusable.  If you couldn’t tell from my other blog, we owed the copayments for all the illnesses we went through.  My oldest had to pay for it from her savings.  I am paying her saving account back every month a little at a time.  The new bathroom wasn’t free.

I work for two different organizations.  My youngest needs Early Intervention for attentional issues.  She finally started last week.  This week, the person is ill.  They referred me to the school system.  She waited 3 months for services.  I completed intake at an occupational therapy place.  It was going to be $1000 to get her sessions.  The school system would only offer preschool.  She just this year got settled in a daycare in a surrounding town.  Well, the city only transports in the city.  I already work a condense day for my oldest to go to another town for school.  When I asked about moving since the bathroom is done, I get told.  Are you ready to get ready half the stuff?  Are you ready to put the dog at daycare every day?  The bedroom isn’t painted.

He is stalling.  It’s going to be one problem after another.  My heart is broken.  This is part of the reason we drifted.  I follow through and somehow he changes his mind.  I would not paint the master bedroom because I don’t sleep there.  He said he would do it last year.  Every room is done not the master bedroom.  There is no safety issues.  I can’t afford to live on my own.  It’s not what I planned in life.  I married him for love.  After the breast cancer and the death of our daughter.  He has changed.  It’s been 4 years.  He quit drinking last year on our wedding anniversary.  It’s more stable here now.  There was no physical abuse.  The kids is loved and cared for.  The problem is my soul remembers our relationship.  Some days, I argue to get him back.  Unfortunately, I don’t know when he is coming home.  With all the kid’s activities, I have been exploring maybe I need to work for myself.  I have gone back to working both jobs to get us to Disney World next year and maybe slowly start working on my own.  I have a plan to slowly move over to working by myself.  He is not happy with this. I don’t get paid holidays or vacation days.  I have to rearrange my schedule or take a pay cut to get a day.   I called the school system to follow up with the referral from Early Intervention.  I got for weeks that someone would call tomorrow.  On my cancer anniversary, the head of Special Education called.  This is very illegal.  Our city is in debut.  Early Intervention confirm my concerns were correct.  My youngest’s behavior is beyond your typical toddler.  She qualifies for services.  The woman says, “well the scores are slightly low and we think she will out grow it.  We are not evaluating her.”  I could make this a big deal.  When they offer the preschool, I will have to decline.  What’s the purpose of fighting it.

Summer vacation is a source of stress.  He said he had no vacation days.  I told my boss I don’t plan on a vacation but to take a few days here and there.  Now, he asks why we aren’t taking a vacation.  He is so inconsistent.  I worry about him like something neurological is going on.  I asked him to go to the doctor.  He is forty-nine years old.  I spent years fighting with my mom to get her health needs met.  I am not doing this.

My last remaining biological aunt has been saying good bye.  I have this large family that otherwise does not interact with one another.  When she does die, I will loose my connection.  I do have the girls.  I feel my roots are about to be cut off.

Medically, I am okay.  I celebrated 8 years since the cancer diagnosis.  I heard about nasal cancer.  I had this bump in my nose since chemo.  I brought it up to the doctor and it has been removed.  I am waiting for results.  My OB GYN wanted an ultra sound because I had 2 periods after the stomach flu.  I am waiting for that appointment in September.  We are looking at another anniversary. There is a place that loves him. The quality of being close is not there.

Otherwise my main stress and sleepless night was about my daughter’s dance classmate’s mother’s death.  The family at dance school was burglarized in the middle of the night and the father was stab multiple times.  A few days later the mother was discovered dead.  It is presumed she may have died from a heart attack due to the stress.  The oldest son found her.  The daughter is staying with another family from the dance school because she is 11 years old.  That mother was present every year at recital.  She was a parent volunteer.  Her daughter went to dance school last night.  Her mother died Monday.

My oldest gave up on Girl Scouts.  Recital is coming.  It’s going to be the youngest first.  It’s going to be a long day of getting her to behave.   It’s summer.  I will have my Thursdays and Fridays with the girls.  I refuse to repeat the mistakes of last year again.  There may be no vacation.  We have a couple of things planned.  The girls are not having a birthday party.  They asked to go to their favorite resort.  We may go away Labor Day weekend to the state beaches in Rhode Island.  We have to pay off the trip to Florida and summer camp for the oldest.

A different family on the street lost their house after 2 generations had lived there at the house.  They have been setting off firecrackers all hours of the night. We suspect it’s them.   A long time friend and elderly person is dying of terminal cancer.  Even through it’s not me, I can’t help but feel for these families.

My head is negative.  I haven’t slept well in a long time.  I wore the patch at night.  I dreams of the youngest dying and my own death.  I am not doing that any more.

My own struggles are going to work themselves out.  I need to get healthy more.  I quit smoking a few weeks ago.  I have working on the diet and I need to go back to running.

It isn’t I don’t know where to go.  It’s how to get there. That is a waiting game. Slowly but surely I will get there.

My “Vacation” Was A Journey

In a perfect world, a vacation means doing something relaxing.  Maybe you are relaxing at the beach.  Maybe you are on “staycation.”  I have many of those.  Forever, I wanted to drive and explore the East Coast.  I also wanted my pink bathroom gone.  For weeks now, I haven’t had my hands free to type.  I have been on a journey.  The word journey is doesn’t mean particularly relaxing.  It doesn’t mean all negative.  It doesn’t mean all positive either.

.For years, I want to drive down the East Coast.  One of my personal issues is to find balance in my life.  I love my family.  I love the technical term, “vacation.”  I love my career path.  Someone said to me in his moment of pain, “I think you just don’t want to work.” No, I love my job and being a working mother.  I am a bereaved mother.  I am a cancer survivor.  I am a rare disease mom.  I am apart of the family of first medically documented case in the world to past on this horrible genetic disease.  That part of story is apart of the pillar that makes me, me.

The week before my trip, my former boss died.  It was a mixed relationship.  I didn’t always agree with the way she did things.  She pushed me.  She gave me good memories.  She gave me sleepless nights.  I would never wish her any harm.  I learned from her is the summary of our relationship.  I also feared her.  It was both positive and negative like this journey we have been on.  I fought the tears all day.  I still work two jobs.  All of sudden, I was at one job and grieving at another.

This is when my oldest Hope got ill.  She had a sore throat for three days.  As a mother, I am the teacher of those rainbows.  I am a protector to raise them right.  Being a bereaved mom, I have a mixed relationship with the medical field.  My own personal life has been spared multiple times due to kidney failure.

It was a mixed bag because we drove to Florida and Myrtle Beach. It was an adventure in driving. It brought new meaning to the word long drive. My toddler daughter was recently diagnosed with sensory and attention issues through Early Intervention. It would have been a tough drive for any toddler in a regular car. She is potty training. There were a couple of accidents that made the drive more challenging.

Hope and I got sick a few days before the trip. It got worst. A week after the trip. I was diagnosed with a sinus infection and conjunctivitis. Hope was diagnosed with conjunctivitis, pneumonia and a UTI. My husband just caught a cold. My bathroom is still undone completely at this point. The bathroom contractor failed to notify us that we would have no toilet or shower. If I had not called him that Friday morning, when we were due home, we couldn’t enter our only bathroom at home. My issue is contractor should keep you informed when they are coming and work delays. I have literally had to be assertive with them. Like who is paying who here. I wasn’t quite raised assertiveness. I wasn’t raised to be a part of the first documented family with a rare disease either. My mother did give me good values. I built on those values extremely quickly after my first daughter Avery was born with Campomelic Dysplasia. I did not ask for this personal journey or multiple challenges we face as a family due to it. My daughters were born to this reality. We never knew before hand. By the age of five, my oldest daughter’s alphabet included breast cancer, chemo, radiation and death.

This brings us to the journey of vacation. I try to raise the girls as leaders. We drove to Florida as the bathroom was getting remodeled. A major needed product to fight the black mold. We got an exhaust fan. I am crossing my fingers. This has been going on for years. Tons of late nights to get the house back.

My job as a mom to teach the girls to be leaders. Every family has a story, filled with challenges and triumphs. Our family’s story is not so different.

The movie Dolphin Tale 2 came out the year, I was pregnant with Joy. My oldest Hope loved the dolphin Hope.

This year we chose to use the bathroom remodel as time to go see the dolphins Winter and Hope. The dolphin Winter lost her tail due to injuries she got from fishing traps left out at sea. She survived and she has a prosthetic tail.

Maybe it wasn’t the perfect trip. I was pretty sick when we got there. It was amazing to finally see Winter and to introduce Hope, my daughter to dolphin Hope.

My Pet Peeve About People, Who Think It’s okay To Laugh, When A Child Runs Away From His Or Her Adult:

Something wonderful happened, you have been chosen to pick up the car of your dreams. One condition, in order to get the car of your dreams, you must give someone a lift with a puppy. You sign on the dotted line. You get your dream car. The someone with a puppy gets in the car. At some point the puppy pees on the interior of your dream car. This someone is laughing and telling the puppy “good job!” How pissed would you be?

Maybe that is an extreme example, listen every day, I deal with my bolting child. I hold her hand and use a shopping cart. My child has seen so many people laugh that she pulls away. She falls to the ground and pulls away. Too many mixed messages. I tell her no and the world laughs. Mom is wrong. One time when a shopping cart was unavailable, she almost ran out the doors because she falls on floor and rolls away. I was able to stop it. The following day it was on the news another little girl was killed by a car due to bolting from her mother. Little ones are cute. Laugh when they think a TV remote is a cell phone. Don’t laugh because if they ever ran in front of a car and died, you wouldn’t be laughing. With all these laughing people, you would think someone would offer a hand. It’s a struggle for me to pick her up in a store. I have neuropathy in my arm due to cancer treatment.

This weekend, I am going to a dance comp for my oldest daughter. I am dreading it. It’s in front of people, my youngest loves to bolt to get attention. What I have started doing is asking those laughing people how is going to feel when they read the news and this child died because she bolted in front of a car. It makes them think. It must be that peeing puppy on the interior of their new car. We continue to work on this.