Tag Archives: #inlaws

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.

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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!

#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.

 

Drawing Boundaries: Happy Holidays

It’s been a crazy month of me working 6 days a week sometimes around my oldest daughter Hope’s activity schedule.  Yesterday was Christmas Eve.  The last Christmas light went up and I uttered a judgmental thought to myself, “like wait until Christmas Eve.” Last week, I worked 6 days to get Christmas Eve and Christmas off.  I was profoundly mentally drained and I couldn’t get out of my own way.   I am married, but my inlaws went their own way a few years ago.  It was strange there for a long time.  They felt I should….  just be happy with this one child.  They uttered to me that I seemed “overwhelmed at one.”  This occurred when I hired a bunch of inappropriate people to care for Hope, who had an axe to grind with my brother.  I did not know what my brother or my sister had done, but the people I hired took it out on me.  Yes, damn it I was overwhelmed.  I thought I hired people, who would care for my precious Hope, who was born after our first Avery died.  I had no idea what a mess of revenge I got myself caught into.  I had really hard time trusting anyone anymore.   It took years to fix it.  Anyways, we failed at delivering a another baby.  My sister-in-law was having one every year.  My mother had dementia.  I was told that I could have one day a week.  When his sister had kids, they gave her 7 days per week.  All this is old news.

I began to separate.  Years past, it became apparent Hope was being hurt by the division as if I divorced.  So this year, I past the olive branch again.  I invited them over for lunch on Christmas Eve. It’s not that I am hoping to get close again.  My mother-in-law has a non-cancerous tumor in her brain.  I am pretty sure it effects her personality now.    I came home after working 6 days straight to find the house trashed.  I was brunt already.  Saying something does nothing.  Lately, I have been working towards removing personal responsibility.  Example: Why is it always the woman’s problem?  Example, I no longer become this fire breathing monster.  I simply say now this is a reflection of you and not me.  After all, you didn’t know we were having guests?  Last year, when the mold was discovered in my house we had a health issue.  For months, I took care of the baby during the day and worked all night cleaning.  I slept for a few hours to drive the oldest to school.  We are talking about painting the interior.  I am clear with someone.  Look mold one thing, but don’t expect this all the time.  I have struggle with insomnia.  My OB GYN told me the length of my cycles are being influence by stress and sleep deprivation.  We didn’t have money for a cleaning company.  It was done room by room by me.  All I learned was never again.

Friday, I got the stomach flu with chills.  I barely made it through work.  My husband got let out early so he got the kids.  It was a struggle to walk the dog.  My body wanted to sleep so bad.  I slept from 5PM to 4AM on Christmas Eve.  The fever was still there.  I took an Advil and I did the best I could.  At the end not everything got done.  We didn’t tell my inlaws because they are germphobic. We did not tell them that I was sick.  Financial I said look, you know these are hard times during the year for us.  Let’s be proactive instead of spending it up and going dry.  Time to save for the holidays all year long.  Every August our daughters will have birthdays.  Put money aside instead playing catch up.

It was a nice time.  Hope went into high gear to help no fights.  We put the dog in the cellar.    The dog barks a lot, except when in the cellar.  My mother-in-law lost a portion of her hearing due to that non-cancerous tumor.  My father-in-law asks about the dog where about and walks into the cellar without asking.  He didn’t say it to me, but he says to my husband, “you need a dumpster to get rid of the stuff down there.  My husband tells me this.  I say to him that I think it is odd to go into someone’s cellar without asking.  I pointed out I wouldn’t do that to my mother.

Maybe, I sound cold.  I am tired of having a major stroke about this house, when visitors come.  Surely, I solely responsible?  I don’t drink beer so I am to be responsible for the beer cans all over the floor.  It’s a new way of thinking.  Don’t want to listen to me.  Let it be a reflection on you.  We have a relator coming Friday to assess the value of the house.  It’s not clear if we can afford to move.  I am not breaking into a sweat for the house to look perfect.  I am not the only one living here.

I drove home one night writing this beautiful letter in my head about why to come home to someone.  I was going to write it.  Buy a special gift and give it to him on Christmas.  I thought it over.  How many times do you need to beg?  The division amongst us was like a slow leaking damn.  No one gave a damn until the damn broke.  Everyone saw it coming, but decided not to stop it.  It happened slowly until the damn broke.  Where to go now?

Remember previous holidays, one Christmas, I had a miscarriage and a D&E two days before Christmas.  Another one, our daughter had just been born still a week before Thanksgiving.  One Christmas in cancer treatment.  It was the first one without mom.  Years pasting, where are you baby?  Will I never get pregnant again?  Will it always be the would’ve(s) and could’ve(s).  It been stressful watching the damn break.  It stressful because of what I want doesn’t quite match the right way and needs of the children.  The aftermath is good and bad days.  I am no longer taking sole responsibility because I am female.  I am spending this vacation with my girls.  I am not saying I am healed completely.  I would not give anything to return to those previous holidays.  I will continue with my meditation classes and seeking outside friendships.  May I say the biggest improvement of the year is the house is no longer a shack.  I hope we continue to grow and heal as a family.  I am going to work on going to be on time.  My OB GYN is having tests.  Hopefully, things go back to normal.

 

 

Clarity In The Journey Of Healing

Sometimes you want to make a choice based on your feelings of isolation and sadness.  I spent the weekend in reflection.  For weeks, I worked extra hours and we planned this weekend.  I was able to spend 3 hours with my In-laws without the rage in me taking over.  Our baby had a restless weekend due to teething and I think needing to eat for a growth spurt.  I felt like the mother of a newborn again.  I wrestled in my private thoughts about decisions and making the right choice.  I weighed out the pros and cons.  This morning, my first thought was I need to stop this.  All those nights of struggling with decisions and being sleepless ended.  My personal demon was put back in the box.

I noticed how quick I am to judge myself and how I am capable of negative thoughts.  This weekend was crazy due to the lack of sleep.  I rushed to put up the holiday decorations.  I finally was able to get the cell phone I wanted.  We forgot the play pack for Joy to sleep in.  The hotel had one.   I was so tired that we ran out of milk and I woke up to Joy screaming.  So in the middle of the night, we found a 24 hour gas station.  I heard myself say,  SLOPY PARENTING ELLEN!  Mistakes happen. Actually, Joy is old enough that she slept between Hope and I fine. At 5AM, she did.  It had been a long night of trying everything.   I couldn’t sleep again.  My agenda was filled too high.  We had the best time in difference to our problems with organization.  As the years go by, I am finding I am able to let go more sometimes.  Finally, the new siding on the house happended.  Today is the last day.  I am in anticipation how it is going to look.  It’s so cold now.  We can’t paint the doors and other areas to accent that new color.  It’s Monday.  What a mess of Thanksgiving decorations, unpacked bags and Christmas decorations!  I am working a few hours tonight and tomorrow.  Hope has a bunch of activities next weekend, so I took another weekend off.  I still don’t have sick or vacation time.  I am at least putting money aside in case the kids get sick or I need time off.

The Birds, The Bees, Rare Disease, Breast Cancer and Embryo Donation 101

The dance teacher wants the girls to get change in one room.   Hope starts arguing with me about getting changed.  Finally, she tells me that she is developing (reference to puberty) and she doesn’t want the other girls to see her.

Since the day when we learned one of us were carrying this rotten rare disease that our daughters died from, I feared this day.  The day you tell your child where babies come from.  We are one of the first cases in the world that the doctors have seen…what a lonely place to be.   I don’t know what this will do to her fertility.   Will someone break her heart because she have difficulty having children?   Will I ever become a grandmother….

So much has happened our family over the years.  I went to a workshop this week.  The hugs from strangers were beautiful.  I rarely get hugs from other adults.  I had a lot of difficulty with the trust exercises.

Hope is getting to that age, when you tell her about the birds and the bees.  The school system is getting the kids ready for sex education next year.  Her vocabulary words a few weeks ago were egg cell and sperm cell.  What  truths to tell…  I don’t know who knew what or who choose to do what.  In February, Hope needs to see a genetic counselor for NF2 another disease.  No big deal!  My mother-in-law insists.  No big deal?  If she has this one, it could cause a bunch of non-cancerous tumors to grow on her central nervous system and impair her abilities.  I am proactive!  I am not going to wait and see!  Hope is also learning about genes in school.

Today, she was talking about genes and tongue curling.  One parent needs to have the gene so the kids can do it.  Of course Hope is smart.  Look mom,  Joy and I must have gotten it from you.  Talk about a tough place to be since her sister was conceived by embryo donation.

I pulled her aside.  How does one talk about the birds, the bees, rare disease, breast cancer and embryo donation.  So, I used my skills working with kids.  I thought it out before I spoke.  It came from my heart.  We talked about everything including her seeing the genetic counselor in February.  I am waiting for my heart and head to exploded.  Where do babies come from? Let’s discuss  Campomelic Dysplasia ( The rare disease we lost babies from.) and NF2 ( the other rare disease)? What about BRAC? (Breast Cancer) Let’s use your vocabulary words.  It felt like hours…  That was only 10 minutes?  Mom made it!

Hope looks at me.  “Mom, I love Joy.  She is my sister. I will love her forever…” What a beautiful young woman she is growing into…  I am blessed indeed!

Remembering Mom & The Family Cat: The Greatest Wisdom Came From A Kindergartener

The week my mother died.  I took the day off to take her to the doctor.  My mother had some form of dementia.  My mother was likeable and friendly.  She could talk to anyone.  She stopped talking and frequently fell.  She appeared not there a lot.  Sadly, my mother lived in a domestic violent relationship with who would be my biological father.  She lost her ability to walk after a horrible car accident, when I was 13 years old.  Life changed forever for me.  I became very protective of her.  We often had to use the subway, because dad owned the only car and he was not helping to get anywhere.  He was often up in NH for days.

As a teen, I would flip around and tell people on the subway, “don’t push my mother.” She had this love for us her children like no other.  My father left finally, when I was 18 years old, because I no longer could get him, “a check.”  She refused to leave me because I was 18.  She want me to go to college and she inspired me.  She did things for my own good that a 20 something didn’t appreciate.  If you have followed me for many years, I had talked about fertility treatment being a double edge sword for me.  I never had the father I wanted.  I worked hard with the love my mother gave me to go to college and grad school.  It’s why my daughter Joy has the middle name of Mary.  I never fully appreciated her until she died.  My sister and brother refused to do anything about mom’s dementia.

My poor mother had her clear moments.  I was so scared having breast cancer and a kindergartener to raise.  I usually wear the just pretend everything was fine mask for her as well, when I lost another pregnancy or battled my infertility.  I began to burst into tears regularly with her.  I begged her to get help, because “I need you more than ever.”  There wasn’t a clear cut case for me to file with the local elder counsel.  The week of her death, I had enough information to file the report.  She thought it was January and she didn’t know who the president was.

A lot was going on that week.  It was the half way point for chemo with me.  I was switching to Taxol.  Part of the protocol is many antihistamines to make sure you don’t have an allergic reaction.  I slept all during treatment.  I made promises to go see my mother, but slept through my promise to se her.  My mother said, “no worries.”  One of our family cats were hers at one point.  She couldn’t take him with her to the senior housing apartment, so I brought him with me, when I married.  He never forgot mom.  The second he heard her voice, he was in her lap.  Sunday was the worst day and I was having symptoms of Neuropathy in the hands and feet.  I didn’t want to go to church, but my daughter Hope, who was 5 years old insisted.  My husband never worked weekends, but he needed to go.  I went.  We went shopping afterwards.  Hope, who never acts up in public was misbehaving.  Later, we learned one of the kids had dropped his pants during Sunday School.   We had a meeting for one of  her activities.  It was in a different place, I didn’t get the email.  We ended up darting to the other side of the city.  All the mothers knew one another and I felt like the 5th wheel, because I was wearing my wig.  Some of the mothers attempted to discourage Hope’s participation because they didn’t want their 5 years olds to see me in cancer treatment.  I had to fight for Hope to be able to participate.

Finally that night, I was so tired.  I told everyone good night.  That’s when it happen.  The family cat began to die at home.  Someone needed to go and someone needed to stay with Hope.  I went.  My cell phone recorded I called my mother’s number 15 times.  I thought the cat died when I arrived to the emergency Vet place.  I told them that I need to go and check on my mother.  I went to talk her into putting the cat to sleep.  The cat had multiple medical issues prior to this.  I knocked.  She didn’t respond.  I went in the house and found her pants thrown on the couch.  No one was responding.  I found her dead in the bathroom.  I felt that I should have start CPR, but I realized she was dead for so long.  I heard myself say, “you are so much emotional pain, why hurt yourself more.” I couldn’t remember the address and I called 911 using her phone.  They confirmed she had been dead for hours.  I began to cry, but she will never meet the baby that I was suppose to have with her name.  They asked about siblings.  My brother and sister are very verbally abusive, so I asked the police to notify them instead.  My brother and sister no showed regularly.  When I was diagnosis with cancer they made plans and canceled.  All of us are in the car, they didn’t hug me or anything.  They began to talk about burying her.  Grant, we hadn’t seen each other in years.  I needed a hug!  Less than one year, the following happened to me:  our baby daughter died before Thanksgiving, I lost my job, I was diagnosis with breast cancer and now I found my mother dead from natural causes.  Instead, my brother and sister spent the week repeated ringing my phone and verbally abusing  me.  I went home that night.  The cat may die tonight.  I called and checked.  He was dying, but they didn’t know he would make it to morning.  The decision to let him go was in my hands now.  I told them what happened and I couldn’t decide today, but make him comfortable and do not attempt to bring him back if he passes away.  He died the next day after we went to have him put to sleep.  He died the moment I held him before the shot.  The vet insisted he get put to sleep anyways, because we paid for it.

All I wanted was to be swaddled like a small child.  In the mist of all these losses, none of the adults could see.  I needed a hug!  I needed a hug!  Please God, have someone hug me!  The only one who saw it was my 5 years old daughter Hope.  She was so confused by it all.  First the cat was dying, but her grandmother died as well.  We buried the cat at the foot of my mother’s stone.  Strangely enough, I never had neuropathy again after the first round of Taxol.

I will always love my mom.  I hold Joy, our baby close.  Mom, can you feel my love for you?  Do you see this beautiful baby who has your name as your middle name?  Do you see how much of a beautiful young lady Hope is becoming?  She died too young.  Over the course of my pregnancy with Joy, I felt as if my mother was there many times.  First day after the embryo transfer, a man followed me into the parking lot out in San Francisco.  I thought he was going to get violent with me.   I was a billion miles away from home and scared.  Thankfully, he just swore at me and moved on.    Eleven weeks into the pregnancy, I had my first OB GYN appointment after a threatened miscarriage.  Of course, a snow storm came.  Most would have stayed home, but I was going.  I hit ice patch and the car spun around many times.  I felt like she hugged me and held us both until the car stopped.  I was not injured and thankfully there were no other cars.

Looking At Old Pictures With Tears & Goals For The Future:

Friday night was another wake up call that our family needs to move.  Our city has been testing a new system in response to the increasing violence here.  We started hearing gun shot noises.  I am not sure if was a joke or fireworks, but we called the police.  Last May, shells from a gun were found on my street.  It’s been like living in an egg shell and praying it won’t crack.  Joy was crying the entire time.  My other daughter had a hard time sleeping.  I slept with one eye open.

I am trying to get a job with benefits.  I find this ironic.  For eight years of my life, I have been trying to bring another baby home.  Finally, I am successful.  She is barely a month old and we need to look into child care options such as a babysitter or daycare.  Since one of my jobs is commission style without benefits, I find myself not earning enough at times to pay child care for a school age child.  Thursday night, we decided to hold off on getting a dog because it looked like we couldn’t afford the baby sitter option.  After Friday night, Saturday, we were at a pet shelter looking for a dog.

Overall, last week was ironic.  I have been mostly in the house caring for Joy.  My oldest daughter’s activities have started again.  I am seeing people again.  Mostly questions and comments about Joy have been all over the map.  Some of the craziest ones have different ones like people asking me if I am “done.”   One person argued with me that Joy was a preemie because she looked so small.  I lost a daughter at the NICU unit.  Trust me preemies are even smaller.  My aunt told me what my cousin said about me being “crazy to want to have another baby at 41.” One stranger asked me, “are you breast feeding?”  Boundaries PLEASE!  Co-workers from both work places called or text to tell me that I am missed.  It felt great to hear from them.

I met a girl a year younger than my oldest daughter living at home with a genetic disease.  This week my oldest daughter’s vocabulary list includes the words sperm cell and egg cell for Science class.  When did she get old enough for those words!  Laughing!

I keep looking for a new job.  All the jobs are longer commutes.  Nothing in the area.  One step at a time….  I will get there sooner or later…  I got to watch it with the goals, because I am really hard on myself, when I don’t reach it.

I have been talking with my oldest daughter about memories of her as a baby.  We were looking at picture albums.  All of a sudden we are looking at my wedding pictures.  There are pictures of my niece and nephew, the two oldest ones.  I am looking at everyone at my wedding.  My eyes were so young and filled with dreams.  Suddenly, I became overwhelmed with the feelings of sadness, loneliness  and isolation.  So many people died.  So many people couldn’t handle the death of our first daughter to a genetic disorder close to 12 years ago.  I lost friendships and contract with relatives.  I am not close with people as much I would like.  A tear fell.  I found myself sobbing.  In the mist of loosing a child, genetic testing/counseling, infertility and breast cancer, I lost so much in regards to relationships and feeling close to others.  My oldest gave me a hug, but I couldn’t stop sobbing.  I told her, “don’t you ever let anything stop you from a relationship with your sister.”

The Dust Of The Weekend

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

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

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

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

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

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

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