Tag Archives: #family

My heart is enraged.

I have been ignored most of my life.  I feel like a failure tonight.  I deal with this emotionally cold marriage.  A marriage where is it like the divorce occurred.  I keep it in and say nothing.  I am sitting in a pile of my sins right now.  The outcome is uncertain.  I tell no one.

My oldest daughter had quite a fit.  She can’t find a notebook and she thinks she is going to have detention.  My youngest is asleep on her rug.  After the oldest had a fit, I went in to check on the youngest.  I found her with arms up and eyes open.  I freaked as a bereaved mom that she had died.  Apparently, she was sleeping with her eyes open and I scared her.  So for an hour, she has been screaming her head off.  She finally fell asleep on her rug.  I plan to make sure she is fast asleep and sneak in to carefully put her in her crib.  I feel inadequate  all the time.  The house, I worked so hard for all hours of the night is back to it’s usual federal disaster zone appearance.

I feel like an embittered old lady at 43.  I so loved the world at 20.  Please bring me home!

My youngest has a double middle name.  One for a dance school teacher who died of cancer.  It’s been a mess.  My oldest has dizzy spells and migraines. The youngest is anemic.  She had a test and she was official diagnosis.  I reach out to the husband of this dance school.  Just like my family of origin, too busy to acknowledge my concerns.  The other mothers of my oldest daughter’s class were like out of control teen agers.  I spoke earlier this month, I felt like I was in high school again with the roll of eyes and them giggling.  Four days a week, I have to be there.

Here I am tonight with the negative thoughts flowing.

Is this paradise after cancer treatment?  A mold filled house that never stays clean. I worked 6 days a week to pay for a baby sitter this summer.  It was pretty clear after my aunt’s funeral.  Once my favorite aunt passes, I will have no connection anymore.   I shut down after the baby died, the cancer came and my mother’s died.  Then, a miracle occurred, I can’t seem to find my way back home.  By home, I mean to a place to be me.  The birthday party was a disaster of no shows and late cancelations.

I secretly worry what all these bladder infections mean.  Did the cancer come back?  I cut off the world to make that miracle.  The world decided I was inadequate.  I see people with families.  I know I have my daughters’ love.  Am I condemned to be loveless in the adult world?  I just want to shower in peace.  There is a piece of me that detests people.  Another part that craves to know I am okay.  I am tired of the S shows.

As for this mold filled house, I always have another plan.  The bathroom is not done.  It needs to be done.   We had to stop looking for another house.  Not enough money for other town.  I am over tired.  Let me end this with this joke.  Okay, we are the first medically documented family carrying this rare disease, which killed our children.  God if you are there, could we win the lottery?  We broke the statistical barriers across the world and over medical history.    So, like could we win the lottery?  It’s a smaller statistical problem.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Talk About Your Anniversary Gifts

A friend of the family gave us a generous offer.  The birthday bash for the girls is almost a little less than a month away.  He told me that his wife and him are coming over to help so I can paint the kitchen cabinets within a weekend.  I am so happy.  It’s been a struggle over 17 months of remodeling for one person to take the kids and the other one to work on the house.

My daughter right after my unpaid maternity leave asked for a mini I-pad for Christmas one year.  Literally, we were putting gifts on credit cards because I just went back to work.  Daycare expects their tuition.  Co-workers/friends got together and gave us enough money to basically pay the first week.  My oldest got her I-pad mini for Christmas.  Thanks to credit cards.   Shortly after she got it, the screen got cracked because she dropped it.  For a long time, it worked.  She left it on the floor and I stepped on it by accident.

Last year, I brought a cheap tablet to get some work done at home.  Well, our work operating system would not work on a tablet.  The operating system requires either old widows program or an Apple device for security reasons.  Here I am with this cheap tablet that wouldn’t work and I couldn’t return.  The deal was, my oldest would share the I-pad with me and use the cheap tablet, when I needed it.  It began to ghost type.  It was freaky.  For weeks, I promised I would try to fix it.  Well, every week I tried.  It looked like according to Google that my child’s Ipad was hacked.  It got so bad, that I am saying to customer service I can’t get it to do what you want because it’s so busy opening a mess of programs that I didn’t ask it too.  I took to it to a repair shop.  It ended up the screen needed to be replaced.  I got the bill.  Here goes all the money I worked so hard on the 4th of July for.  We have so many bills upcoming.  August is both the girl’s birthdays.  This year, we decided to do one party.  My oldest is getting too old.  Joy doesn’t have any outside friends.  It made sense to show off all the hard work on the house.

Well, our relationship has been disconnected for years now.  He won’t hire a babysitter.  His mother will not help.  My mother died years ago.  The tradition was…  I would start in June to beg his mother for one annual night of babysitting.  One year after multiple prompts, she forgot anyways.  We were told we were only getting an hour that year.  So, I had it with him and her.  Finally, I stopped talking about going out for our anniversary.  Why brother?  Two years later, he panicked.  Why weren’t we going out anymore for anniversary?  This year to afford a babysitter, I need to work a shift and a half.  This year, I figured to say nothing about our anniversary.  Maybe he will forget.  I said nothing.  Damn on June 30th, he says so what are we doing on our anniversary.

Please don’t think I am cold. We haven’t been close in years.  Forget it!  It caused a string of arguments Last summer, we were totally drained financially by summer camp, infant daycare and two individual birthday parties. I think I have mentioned, we are trying to move and the youngest conception bill is still not paid for. Plus, I had to hire a babysitter to cover my oldest for the days summer camp was not in session.

Friday, the Ipad was all fixed and home. We picked it up.  $140 gone.  Another words, all the money from the extra shifts.  I wasn’t with my girls for the 4th of July.  The ipad is back and it’s how I am trying to catch up at job one.  I spent the day working around the house.  Not much got done due to a bad toddler day on Saturday, which is why our friends are helping us.   Saturday night, I decided to go to a Reiki Share.  I find it refocuses me.  It’s tough work working substance abuse.  He said he didn’t mind me going. I left at 6PM.  The second, I came through the door, something was wrong.  His cell phone is laying on the ground.  He put the package of dog treats in the freezer again.  We don’t sleep in the same room, so I freaked out.  I shook him until he stirred and I knew he was okay.

I left for work on Sunday.  I texted the oldest call me.  Well, the oldest calls me in tears.  I trying to put out a bunch of crisis’s at work.  Now what is going on.  Well, she is crying because the Ipad’s tempered glass is broken now.  $140!  I wanted to scream.  Something told me not too.  I’ll figure this out later.  Working was a good excuse not to see the in-laws.  I drove to the restaurant and met him there.  He had this pretty speech all prepared.  So, I fell for it and both of us ended up crying in the car.  Well if it is a screen protector just get her a new one.  I order it.  We ran out of time.  Today, the dentist calls we forgot the appointment, but they schedule it for later.  It rearranged my day.  We ran errands. So, I told her this is her last chance with the Ipad.  She told me the truth of how it was broken.  Poor kid took the responsibility for a day now.  I got so mad that I went into confrontation mode with who broke it, which ended with an ultimatum.  My oldest begging for me to for finding her at fault.  I took pics of it because it may have lead to me taking the person to court.

My oldest is crying.  I am so upset.  The toddler drops a shoe in the car.  I didn’t bring the stroller.  My breast cancer arm is aching a short trip to the store ended up me walking the mall because the whole screen needed to be repaired again.  When the temped glass shattered, it took the screen out  again.  The toddler is persistent about walking.  You can’t let toddler walk around bare foot at a mall.  She missed a nap.  She is a mess.  One melt down after another.  I am trying to call friends and figure this out.  Basically, with all my friends, I develop a plan.  I am getting breaks here and there.  Finally, you know what.  It is the problem of the person who caused this.   Not my problem, let him fix it.   I had to call out.  All because I wanted a few hours to myself.  Heartbroken…  Supposedly, there are more promises.   Follow through this time!   Really, I deserve a social life.  A few hours to rejuvenate a few days per month…

Promises are nice words of setting intentions.  After so many broken promises, I am hoping for reality!  Show me you will follow through.  Reality is more picture perfect than those words that never lead to following through!

MOM IS READY FOR MIDDLE SCHOOL!

I already completed middle school.  I feel just handling the childcare issue was a challenge for this family.  It is illegal in my state to let a child under 13 years old stay home alone.  My daughter had difficulty in the city school system with bullying.  Some of the surrounding towns will allow your child into their school system.  Your resident city or town will be billed for your child’s tuition to attend a different town’s school.  We couldn’t afford private school due to medical bills from my breast cancer and infertility treatment.  We put our oldest’s name in the lottery.  She was turned down during first grade.  Second grade, her name was chosen.  For years now, I have had the responsibility to transport her to and from school, which was not a big deal since it was on the way to my old job.  I have had two jobs now for 5 years.  After the youngest was born, I switched jobs.  The main job is closer to Boston.    It makes my commute an hour and half to two hours every work day.

I was fearing if my main job could accommodate next year’s school schedule.  Child care for preteens really lacks.  Summer camp and infant daycare swallowed my checks whole last year.  She refused to go back to back to the art camp.  Since my oldest is going to middle school, there is no afterschool program.  My oldest can go to the library about an hour with friends and a cell phone.  That’s not childcare!  Which librarian signed up to be a childcare worker?  I am also not thrilled to learn most of the middle schoolers and high schoolers hang out at the local corner store after school.  If you read my last blog, I stood to loose income etc…  My children are always first.  I have been the one historical to take the blows at time to my vacation time.  My husband does too.

Thursday morning, my stomach was so anxious, it was eating itself!  I was overwhelmed about leaving a job that I didn’t want to leave.  We can’t afford to move.  Without the right wages, we can’t afford a house in that town.  We owe some serious money for my youngest child’s conception.  I sat down with a manager and had a conversation about look I need to know.  My other job was willing to accommodate me and possible hire me to work with children.  Instead of threatening to quit, I started the conversation with how I respected my place of work. Then, I asked I need those hours accommodated.  I cringed like any second I would be asked to leave.  Oh my!  It worked out very much in my favor.  I was offered to slowly transferred to the nursing home program.  My heart beamed with such relief!  Thank God!  I don’t need to quit!  I began to call my oldest and my husband.  I hadn’t slept in nights!  All that stress was for nothing!  I was going to sleep tonight.

Then, a message came from the babysitter, who I thought I had made it clear my hours were changing, when she accepted the job.  “I can only watch them on Wednesday and Thursday.” The text message said.  I started to sob.  I just told my boss a date.  Now it looked like I had to back track.  I ended up on my lunch break calling a mess of people for coverage for 3 weeks on Mondays & Tuesdays.  All the stress came right back!  I finally ended up hiring the teen, who does the church care for our church.  She is going to come over my house.  I just have to give her a lift home.  This has been my week.

The family daycare was getting mad about me not giving her a deposit.  She was telling me that she may be fully enrolled in shortly.  That was a whole scramble to pay for a spot for my youngest, but she is enrolled now.  She is not returning to the daycare center with multiple lead teachers.  Her behavior has been extremely frustrating at times.  I think the kids learned some bad behaviors while the toddlers had musical teachers, who never returned.  Extremely small children require attachment to their caregivers.  She wasn’t getting it there.  I hope with regular caregivers she will calm down.

I understand we can’t afford to move.  I should be painting the kitchen now.  Every day, I take care of the kids and do something to move this house forward to our ultimate goal of moving, so Hope can walk home from school.  Hopeful, now no more bumps in the childcare road.  What makes me so mad is, she knew this volunteering for babysitting.  She knew I was so in fear of loosing my job.  It was like she waited to drop a bomb on me not knowing it.  Mom is ready for middle school!  Hopeful, we are not scrambling next year.  I hope next year the blog reads.  Yay!  We are moving!

The good news is the job is going to be an opportunity to learn new skills with a population that I have had some interaction with.  I think everyone won!  August 14th, I will start my new schedule.  Right after vacation!

Frustrated

Summer was not off to a smooth start.  Joy, my youngest has toddler diarrhea.   My oldest will be going to see more specialists about her liver enzymes off and her vertigo.  We can not afford to move to the town where my daughter goes to school.  I work two jobs.  One made promises to accommodate my needing to get and pick up my oldest from school.  I am not seeing the paperwork going through.

Joy needs to be at a new daycare.  In the 17 months she was at the same one,  she had 5 different lead teachers.  I have witness one toddler push her to the ground repeatedly.  Her last day, the written was on the wall.  My oldest didn’t want to go to an art camp.  So, I hired someone who worked for the school system to babysit both the girls at a flat rate.  This person is worth more than I can afford.  Childcare takes over half my pay to pay.  I work in human services, so I can expect to earn between $30,000 and $40,000 full time.  Remember, I have been doing this 14 years.  I love the field.  I give up dreams of being rich.  I work about 30 hours per week. After fighting cancer, infertility and infant loss, I am spending time with those two girls, who I fought so hard for.

I can go to one job and quit the other. I will loose $200 a pay period.  I am trying so hard to get our family out of the 100 most violent cities in America.  There is a price difference between the city I live and the town Hope goes to school.  If I sell this house, we need a bigger mortgage to get in that town.  Chances are after all this hard work to fix my house, we can only afford a fixer upper.  We have been painting the kitchen.  We are literally tripping over stuff to remodel.  My house needs a few remodeling expenses like a new bathroom to sell it, which we can’t afford.

I am between a rock and a hard place.  There is no public transportation between the town my daughter goes to school in and where we live.  I don’t think she is quite ready to stay home by herself.  I work too far away to take a lunch break late and go pick her up.  If she returned to our city schools, she would be badly bullied.  One job is open to split shifts.  The other job made promises the paperwork didn’t show up.  When I try to talk to them, they just say it’s too far away.  That job requires a two month notice.  I sent them an email saying I need to know now.  I find myself struggling with between finances, work and parenting responsibility.

Yesterday was my daughter’s recital. I decided to reach out to my in-laws.  I finally told them how much I earn for a living and the costs of childcare.  These guys come with a warning sign, “emotionally out of order.” For years, they have caring for free my sister-in-law’s kids, who is a high paying nurse. Her former spouse scammed thousands of dollars from them.  She is their favorite.  My father-in-law pissed me off.  He said to me, “your mother did it and you will too.” Swears flooded my brain but the kids were there.  My mother died a horrible death.  She left me in care of my siblings who were abusive.  So, once again, they are not available.

This weekend has been stressful.  After many years of fighting infertility, I am very aware of my length of cycle.  It didn’t come.  I said is this a joke?  I found myself day dreaming of an accidental pregnancy, which is impossible.  Today, we tried to start a dog walking group.  No one showed.  I have been having so many difficulties with heavy bleeding and long cycles.  Last month, I made it a point to try to sleep at least 7 hours per night.  I also took vitamins. People have been telling me that I sound perimenopausal. I took a pregnancy test.  It was negative.  I flunked in the accidentally pregnancy accident department.  I found myself grieving again. I began to fantasize it was menopause and the nightmare of heavy bleeding was over.    Four days late, guess what came today.

My brain is tired from crunching the numbers.  I am worried about my relationship with others.  There is no afterschool program for Hope, who is going into middle school.  That’s about $50 per week we save.  Today, I paid the deposit for Joy to start a home daycare program that follows the school year.

Money is money.  People can never be replaced.  We have food to eat and a home.  Everyone is healthy that I am aware of.  The mother of Hope and Joy is going to have hope that an answer prevails soon and joy returns to the home.

Asinine With A Capital A: VSP Plan

Tuesday, the bump was removed from my ear.  It did not hurt going out as the biopsy. The bump on my ear may have been caused by my eyeglasses.  Wednesday, I wore my contacts.  My eyes dry up quick and get irritated.  Wednesday morning, my eyes are stinging on the way to work.  I take out my contacts to put a solution in.   At some point, I realize my left contact is not in.  I am on the floor on hands and knees for over an hour.  I call my eye doctor’s office.  Drive here and we will give you a new one.  I am at work 15 miles away.  I have to find an optical shop to buy one contact lens in the area of my workplace that  I could walk to.  Not one place was willing to help because I am not a patient.  I put the one lens in a dixie cup with some solution.  I was getting a major headache due  to the world one eye perfect.  This is another point in my life where I feel no one is there.  I did my job blind.  I can’t see the time.  I ran late.   It screwed up my day and my client’s day.

Of course, Wednesday was car seat installation day.   We had to buy a new one to gave the old one to the babysitter for the summer. 3/4 of my pay goes into child care for the summer for both the girls, when school is out.  It’s a placeholder for my job. So, I could only figure out to make myself an eye patch with paper and an elastic band to drive home on one contact lens.    I took the back roads home.  I drove straight home to get my eyeglasses, then the girls, drive through for dinner and straight to the police to have the car seat installed.

Today, the doctor calls. The pathology report indicates the bump on my ear was caused by pressure by either my glasses or the way I sleep.   There’s a  risk for the bump to return.   I suffered with it since mid-April.  The bump hurt.  It throbbed!  So, I called to see if I could get a new pair of eyeglasses.  I am due in October for glasses.  I was told that I couldn’t get glasses paid for through the plan.  Are they kidding?  Just buy another pair and get 20% off.  LISTEN 3/4 of my PAY IS GOING TO CHILD CARE THIS SUMMER!  I seriously doubt I afford to pay 20% off as I will be just barely taking home a quarter of my pay after childcare every 2 weeks.  There is a mortgage, a birthday party for the girls and a conception bill for my daughter’s embryo donation.

Meanwhile, it looks like I still need to figure out how to incorporate working around my oldest daughter’s school schedule at middle school.  IT IS EXTREMELY TOUGH WHEN IT IS YOU OR YOUR HUSBAND.   Where is this village that people talk about to raise a child?  Did I get gypped a village?   Two summers ago, I was mentally prepared to enter my own C-section alone, because my mother-in-law was trying to bail on watching my oldest as I gave birth.  We never ask for her to care for our children.   I wish I had this family/village to help.  Unfortunately, my mother died from some form of dementia.   We live in a city on a list called the 100 most violent cities in America. I keep trying to get my girls out of here.  IT’S THE EYEGLASSES, THE CO-PAYMENTS, GAS FOR THE CAR etc… that keeps us from buying another house and moving.  It’s like which came first the chicken or the egg. How do we get out, when bills are piling?  I could work longer if my oldest could walk home from school.  The houses in that town cost way more than my current house is worth.  I am upset and stressed.

Through The Briers: A Rose Was Found!

My ear has been throbbing away since the biopsy.  After all these days of worry, good news prevailed!  The lab report was normal! Whew!  The polyps in February and this cyst on my Breast Cancer Survivor Anniversary all points to time to take better care of yourself.  Next time may not be a warning shot!  Tomorrow is the Friday before Memorial Day, my anniversary of breast cancer.  It’s raining here, but sunscreen will be top priority this summer!  Time to celebrate with walkless events with the family!

Briers For My 7th Breast Cancer Anniversary

Our family has been facing some medical issues recently.  I took a break from remodeling.  Sadly, my schedule on days off have been very booked.  The family ferret has insulinoma (caner of the pancreas).  She has required multiple trips to the vet to check her sugar levels.  My oldest daughter has been having dizzy spells.  I feel like a cab.

Since the family vacation in April, I found a lump on the top of my ear near the skin connecting to my head.  It has seriously hurt, when I wear glasses.  I thought this is a cyst.  For weeks now, I have been trying a number of home remedies to get rid of it.

I had surgery to remove a number of polyps from my uterus in February.  I was having heavy bleeding and 21 day cycles.  Last week, the heavy bleeding returned.  I got up and left stains everywhere.  So, I called the OB GYN.  They made an appointment for this week.

On the same afternoon, my phone rings again. My daughter’s doctor office called with a neurology appointment for Tuesday, which is the same day as my OB GYN appointment.  This neurology appointment is in the morning.  The OB GYN appointment is in the afternoon.  Both are hour drives in the opposite direction.  I thought no problem.

Monday was my physical.  I had been suffering with the bump on my ear for awhile.  I had to take the youngest with me, since my husband took Tuesday morning to go to my oldest daughter’s appointment.  I showed him my ear.  He felt a Ears, Nose and Throat Specialist should look at it.  He was concerned about skin cancer and if it should be biopsy.  Cancer again?

My toddler fell asleep on the drive home.  I sat in the driveway in disbelief.  My phone rings again.  The specialist can see me mid morning on Tuesday.  I felt so emotional drained.  Yes, I do have my girls and my husband.  There is just no family involved in our lives.  There isn’t an aunt or a grandmother to call for help with the kids.  It’s in these situations, I feel very isolated and alone.  (My last C-section erupted with an argument with my in-laws about who was going to take care of my oldest.  I actually mentally prepared to go into a C-section by myself with no support.) I couldn’t ask them for help.  I spoke to a few friends about the lump on my ear.  It made me feel slightly better.

Worst of all, I have been working Monday and Tuesday nights at my other job.   The neurology appointment for my daughter made me anxious.  I buried two babies due to a rare disease.  There was another part of me that knew this was routine.  My recent surgery on the polyps reminded me how alone I am.  I am running all over the place.  I got my glasses tighten.  Hope, my oldest, was anxious about the state exams and the neurologist appointment.  I promise to take her to one of her activity stores.  I spoke to my medical oncologist, who said I couldn’t have a hormonal IUD for cycle control due to my previous history of breast cancer.  Some of the IUD’s can thin and make a cycle quicker.  We also talked about my ear.

Tuesday morning at the neurologist appointment, it was a bit of a rough start.  I am staring at this genetic history form and I am tired, drained and overwhelmed.  I am telling her it’s not a good day to ask me if I am in good physical health.  Another cancer diagnosis my happen again.  Finally, I said, “I am struggling with this form.  Our family is the first documented genetic carriers of a rare disease.”  The person, we met with softened.  All sudden, I felt she got it.  Basically, Hope was diagnosis with Vertigo.  They want us to see a Ears, Nose and Throat Specialist to rule out allergies.  One appointment down. My husband asked to work from home to cover all these doctor appointments.  My toddler is very active.  He takes Hope to school.

I call my aunt, who is 80 something.  She sounds horrible and wheezy due to a cold.  I go to check on her.  I meet the Ears, Nose and Throat Specialist and explain all the appointments I am going through.  She was very understanding.  She told me that the lump looks like a cyst, but it should be biopsy.  She explained if it is cancer or not cancer, it needs to be removed only.  More good news.

I decide to drive home and drop by to see the toddler after eating lunch at my favorite bakery from my childhood memories.  I am wiped out.  I figure I better update the school nurse.  She says to me, “your daughter landed wrong on stage. She is here now.” Now, I know I have to take this kid to the walk in clinic after school.  My ear starts throbbing bad from the biopsy.

The OB GYN appointment was okay.  There is little they can do to control this bleeding.  I leave and I go to check out.  There is a couple sitting down talking with check out.  I go up to the other window a few times.  No one comes.  So, I give them their space.  All of sudden, a medical receptionist screams at me, “is someone hiding in the hall.”

So, I corrected her.  I told her, ” I am not hiding.  I have been at the window twice and no one is paying attention.” It’s been a miserable day.  I hate doctors.  I am at the end of my rope.  My ear is really throbbing.  No painkiller is touching it. When the receptionist is checking me out, I am telling her to retell me the information.   I called my boss and asked to go in to complete my work and leave early.  She agrees.  I can’t miss work since I have no vacation or sick time.

I can’t go to another doctor.  I just can’t.  So, I called my husband and told him to take the oldest to the doctor’s.  I got good news mostly.  I felt so emotionally drained today.  My oldest has a groin injury and she can not walk.  I spent half the night finding other things for our family to do this Memorial Day Weekend that require no walking.

I have come a long way since starting this blog.  I stopped complaining and I am doing things to improve my life.  I am making friends.  I am aware I can’t discuss my baby loss issues with them either.  I tried to get out once a month with my friends to take care of myself.

It was the Friday before Memorial Day that I was diagnosis with breast cancer.  It brought new meaning to LONG WEEKEND.  Today, I finally told my oldest what is going on with the ear.  It was so hard this morning because she was in so much pain and I work during the days Wednesdays through Fridays.  Even if I could stay home, she would have missed the state exams.  She had to go to school.  My ear just throbbed today due to the biopsy.  I am hoping for better days.  I am also taking this as a warning sign to take better care of myself such as count my steps, quit smoking and sleep right.

#NIAW2017 Our story: The Journey of Hope & Joy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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