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My “Vacation” Was A Journey

In a perfect world, a vacation means doing something relaxing.  Maybe you are relaxing at the beach.  Maybe you are on “staycation.”  I have many of those.  Forever, I wanted to drive and explore the East Coast.  I also wanted my pink bathroom gone.  For weeks now, I haven’t had my hands free to type.  I have been on a journey.  The word journey is doesn’t mean particularly relaxing.  It doesn’t mean all negative.  It doesn’t mean all positive either.  I am going to write three separate blogs.  All three blogs represent the journey that occurred with my family.  The funniest will be the one about the pink bathroom.  The saddest will be about the lost of the family ferret to cancer. Hopefully, I can get these done soon.

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

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

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

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

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

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

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

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

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

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


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

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

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

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

Your Pink Elephant Is Real!

I sat through two appointments today about what to do with my youngest, who is 2 year old and having attentional/sensory issues.  This week has been a whirl wind.  I am trying to catch up after having a bad case of the stomach flu.  My oldest had an appointment too, due to her anxiety over middle school.  She is going to be going to counseling for  a bit.

It’s like this. Last fall, we paid a $1000 for the front end of my car to be rebuilt after a tire popped on the highway.  Thankfully, we walked away. I started hearing more noises lately.  It’s an inspection sticker month.  I asked them to look for the source of these noises.   I am hoping they just say your crazy lady.  I returned to get more $1000 estimates on more work to be done.

I was hoping the day of my 2 1/2 year old evaluation I was hoping to hear I was crazy too!  My gut is often correct.  The worry is setting in.  She is two and half and she needs services for attentional/sensory issues.  What is her future going to be like?  What will kindergarten be like?  I feel the guilt, the worry and the blame.

Remember something, my first daughter died from Campomelic Dysplasia.  I was a Rare Mom first.  I learned rather quickly how to advocate for Avery in the 14 weeks we knew.  It happened again.  I advocated for Addison.  Shortly later the breast cancer came.  We are not talking a rare disease or cancer.  Weather it’s migraines or sensory/attention issues, this rare mom is up for the challenge, because Avery Bravery taught me so.  Even through these are more common problems, my brain is on it!

Next week will be a little emotional for me.  It’s my birthday.  I am not grieving getting old.  I grieving my losses.  My father was extremely verbally abusive.  I knew that I was not wanted at an early age.  My mother gave me all she had.  It was my saving grace.  There is still a piece of me that makes me feel like a loser.  It is at this time a year, I miss my mom and my angel children the most.  I see what others have.  The negative thinking is having a field day in my mind. The empty parts of me light up with intensity.   My sadness has lessen compared to other years, when I would wake up in tears around my birthday.  Some days the emptiness of his words punch through.  I have plans to quietly celebrate my day.  This weekend with friends.  Next week, I will celebrate with the girls on the actual day.

Lately, my career path options has been popping up.  My resolution was to bring our family to a healthier path.  I signed papers for the school system to look at my youngest daughter.  She only has about 5 months with Early Intervention.  More time pressures on my schedule at work are possible.  This week was filled with antagonistic comments. I couldn’t fight them.  I feel like I work harder than I need too.  There are other options to make my life easier.  I don’t claim to have the perfect balance.  After Campomelic Dysplasia and Cancer, I don’t have the same priorities. Surely, there must be more options.  Life can’t be this hard.

There is a housing shortage.  All this hard work to get out of this city.  The houses without needing work are too expensive.  The thought of moving out of this house into another fixer upper depresses me.  We put so much into this house.  It may not be this year the big move.  I am hoping.  The last big project is the bathroom being redone.  No house is without work to be done.  Hopefully, we find that dream house and move on.  The other town is top preference.  I was told if my daughter could walk to a bus stop, they would consider transporting her.  Not so much is up in the air as compared to other times in my life.  I am going to hope.  I may take a plunge into a new career move.

PS-The doctor thinks Joy may have some milk protein allergy going on.   She is doing way better on milk free milk like Almond milk.  The eczema cleared up on her skin Her acid reflux meds are fine.  She recently had regular milk by accident.  Her behavior was uncontrollable and she had diarrhea.


For months, I have been struggling with someone’s addiction, raising the kids, working 2 jobs and fighting mold at home.  I have been dealing with public outages from my toddler child.  It’s Ellen’s problem.  Aw, isn’t the little girl so cute with her mother running after her.  Work harder Ellen!  Get it done!  Go chase after Joy!

When my daughter Avery died, people didn’t want to hear it or see the pain that being the first of the world.  I locked every door.  I said nothing of any importance.  I kept it polite.  I have my own way of coping with the addiction.  Some I am not proud of.  I have tried everything.  For months, I heard “don’t worry about.  She will grow out of it.”

My professional side was flagging it saying, “no, you need to do something.” I was in between two jobs.  I have been stuck in my own island of pain with a volcano ready to boil over.

Joy had her evaluation yesterday.  Yes, she needs services.  I should have trusted my gut instinct.  I have been very ill all week with a stomach bug that refuses to go away.  The doors are open in my life like this.  I continue to live on a island looking out a window and seeing what everyone else has or to take the risk.  The risk is people are not like math.  People are individuals with their own moods and behaviors.  Closing the doors, there is safety.  It’s lonely, but somewhat more predictable because I am the ship’s captain of sorts.  Close the door, we miss the opportunity to grow and become.  We are on our own fighting these feelings without experts or help.  Kind of like good luck battling the breast inside, while being the breast.

Closing the doors, the kids suffer.  Hope has anxiety.  Joy can’t follow the rules.  Avery Bravery.  I put my hand on the knob. Flinch. I swing the door open.  Here’s to Hope and Joy of life!  I feel like Elsa!   Life is about risk.  One child done.  Hope has an appointment Monday.  I Hope this brings Joy for the family.  If the door remains closed, I will never know.  Okay, I need help.  Let’s see what happens.

Introspect: Thoughts of Rare Disease Day

I have spent these past two days fixing what my youngest daycare has ruined in the past 5 months of working with her. Sometimes, I am numb, angry and sad. I look into my miracle baby’s eyes and I know she is hurt, scared and sad. I didn’t see a point of returning her to a daycare who whitewashes the truth. It’s also an act of self care for me, because I can’t be so anxious all day long about what is happening with my daughter. Normally, I don’t just abruptly terminate, but continuing this just seems continues the destructive pattern of hurt that robbed my daughter, myself and all those little ones. I am not sleeping much. I am anxious about her first day at the new daycare next week. I carefully and politely thought out my last text to her now former daycare. All I got was, “I am sorry you feel that way.” Listen, this woman should have told me months ago.

I am agnostic. At one point, I was a cute loving Christian girl. I loved and embraced life. Lately, I have been working in a 12 step support group to heal. I want a piece of that loving little girl, who had big dreams. Part of my higher power is the babies I lost. I feel they are always with me. Two babies died of a cruel Rare Disease. Let’s talk about this, there was an outburst about 12 years ago when my caregivers that hired for my oldest needed to be fired. I feel Avery’s protective spirit enlightened my awareness of what this daycare provider feels was, “me blowing things out of portion because she lied by not telling me about my daughter’s day. Like the whole truth. Thank you sweet Avery. Keep your sister safe as she transitioning to a new daycare. Let this be home for my miracle child until kindergarten!

💔Heart Breaking Valentine’s Day

I published the last post because I never got to finishing it.  Overall, I am not problem free.  I do feel my depression is lifting.

Last month, my daughter had her 4th eye exam.  I sent my youngest to a drop in daycare center.  The eye doctor thinks my oldest is having migraines due to needing glasses.  Her good eye is over compensating for her bad eye.  She just got new glasses.  We are hoping this will work.

The two jobs are killing me.  So, I increased hours at one job and I in the process of decreasing my hours in the hopes of finally getting rid of the evening job.  It is not worth it mentally or tax wise.  I work Saturday through Wednesday to try to save on child care.  Then, my immediate supervisor quit at my main job.  All of sudden, I have one new boss unannounced.  The guy kind of rapid fired me a bunch of questions.  I had no idea how to answer him.  The evening job is not letting go easily.  I have been taking a training on starting my own business.  I am seriously considering it.  I have ended up working 6 days a week.  I have been lied to and given too much work for being part time evenings.  I am tired of dragging myself.

Last month, my medical oncologist no showed.  It bothered me.  I don’t like the cancer appointments.  I love the reassurance after the appointments that cancer has not been detected.  Friday, bright and early Boston bound, I left for my mammogram appointment.  I took a Benadryl because my anxiety gets extremely high.  Last year, I dropped my wallet in the car and the whole thing was a mess.  This year, I had everything planned until the cell phone cord decided to not work anymore.  We stopped to buy a new cord.  I got the wrong one.  All my stress strategies  were on that phone which was running out of power.  I whined for a while.  Then, I spent the drive (my husband was driving) playing with my youngest.

My oldest has been having a lot of anxiety about school.  She would wake up at 3AM to check her homework.  The only reason that I am aware was one day her homework went missing.  I woke up to her sobbing.  At first, she agreed to counseling.  Now, she has changed her mind.

I decided to take the oldest on a camping trip at the mall with one of her activity groups.  We had the best time.  Coming home, that trip has bitten me.  I have never been away from my youngest.  It was my first night away from her.  My dog apparently was upset as well.

Monday morning, the dog got into the trash.  My husband tried to pull the food out of his mouth.  The dog bite him.  Fridays is daycare for our dog.  He couldn’t go this week because of my mammogram.  This time, he didn’t need stitches.  The dog started acting up.

During the overnight at the mall, I forgot camping pads.  Nothing like sleeping on ceramic title floors in a sleeping bag.  Apparently, I slept on my hand wrong.  I struggled to write on Monday.  I was badly sleep deprived.  The whole dog biting incident happed at 4:30AM.  My husband wakes up at 4:30AM everyday.

I thought this met be stressful for my youngest that I was away.  So, I emailed the family daycare center provider.  She told me she had the perfect day on Monday.  Recently, we had another episode of bad bathroom contractors.  They wrote the estimate for one amount about two weeks ago.  They showed up unannounced asking for more money.  We said no.  They are giving us a hard time about refunding our $3000 deposit.  What I usually do is fix everything.  The credit card is not in my name.  I have been going to support groups without telling everyone due to this summer and all the events.  We started arguing, because someone is use to me just marching in and fixing it.

Tuesday, I got pulled by the family daycare provider that my youngest had a bad day with pulling toys away from the other children.  Well, I figured I will just spend time with the dog and child.  I am out on my driveway doing “leave it.” I spent time with both of them.  We went into the house.  The girls made Valentine’s Day surprises for their father.  I figuring this must be the answer.  My youngest is 2.  She is upset that the dog bite her father.

Yesterday, it was a mess to talk to the new boss and get my work done.  I was up bright and early to finish my work.  My toddler made valentines for the daycare.  She seemed upset about the fact she was going to give them away.  I got disappointed because it was unclear if my husband and I were exchanging gifts.  I brought him cookies and candy.  I gave him money in a card.  I got upset, when I only got chocolate.  I drove my youngest to daycare.  We reviewed the rules.

At noon, I got a text from the day provider to call her now, but my daughter was fine.  Literally, I had to cut someone short for a few minutes to talk to her.  My youngest was hitting the other kids.  Here was the killer.  “We need to talk because I want to know we are on the same page.”  Is she serious?  I called Early Intervention in December.  I reviewed the rules every day.  The kid was doing well for a month.  It was two days of this week.  I came very close to firing the daycare Christmas break, when she almost ran into the parking lot of the library into moving traffic.  I had stream coming out of my ears.  How much same page did she want?

I went to pick up my youngest.  She never gives her any consequences for her behavior.  How many of you would voluntarily pay your taxes if there were no legal consequences? She starts yelling at me my daughter needs a big daycare center next year. Next week is break for the schools and the daycare follows the school system.  Not every daycare does.  This woman is only open when the school is.  She told me that she didn’t want to hear my youngest had perfect days at the drop in daycare.   I got mouthy and asked her who she needed the placement for, when my daughter leaves.  She asked me if I have problems at home with my daughter and I said no.  She is going into dance class by herself.  There are no problems at home.  She informed me that one of the parents complained about my daughter this morning.  AGAIN, I reviewed we use time out at home.  All she told me was she does body checks.  She doesn’t like timeout because the kids don’t like it.  She wants me to develop a crisis plan for my daughter.  I am like why she is suicidal at 2?  Hitting is unfortunately a toddler behavior.  This is when I got pissed.  “She has been hitting people since Monday.”

Isn’t that interesting?  She said she had a perfect day on Monday.  Now she is telling me that she let’s it go if my daughter hasn’t hit over a certain amount.  SO MAJOR QUESTION: HOW LONG HAVE YOU NOT BEEN TELLING ME THIS?  WHO NEEDS TO BE ON THE SAME PAGE HERE!

We left. My preteen is having a melt down about her day.  I am so mad.  For a few hours, I am streaming.  My oldest is giving me such a hard time about getting dress for dance, because she playing on that IPhone.  I am trying not to give the toddler more candy, because she may had too much all day.  She is eating candy in front of the toddler, who of course wants some.  I text the drop in center as well.  They had her once no problems.  The drop in center is just back up daycare.  I told her family provider along time ago that I was hiring the drop in daycare to help like a baby sitter to cover times her daycare was not open.

I sent text messages to another daycare that was expanding and I was referred to by the licensing board of daycares to start with.  It’s in a third town.  We visited during the Christmas break.

I am literally so upset.  I am grocery shopping without a list, when a text message returned.  “We can take your daughter on Monday.”  GIFT!  I wanted to happy dance in the store.  So, I thought this over.  When I got home, I decided this was it.  I told the family daycare provider my daughter will not be back anymore.  We pay for the week in advance.  I would pay for two daycares for one week if needed because my child’s needs are not being met.  So, my poor daughter, she must be so upset.  I had no clue.  TRY TELLING PEOPLE THE TRUTH.  I felt so betrayed!  Tomorrow, we fill out paperwork with the new daycare.  I am going to try to see if I can cancel the days that I signed up for at the drop in center.  I think my youngest should just go to the new daycare instead of two different centers within two weeks.

I know I am writing less.  I have been going to a support group more and finding it helpful!

Life Did Get Better: So Did Joy


I think I was ready to have a nervous break down with Joy.   Somehow! Someway! Little one’s light turned on!  I was constant and last weekend.  The little girl, who barely made it through dance class, she spent the entire class by herself and listening to the teacher.  My jaw dropped!  There she was out on the dance floor by herself and LISTENING TO THE TEACHERS!  WOW!

It wasn’t just dance school.  I heard from daycare that Joy did a 360.  The little one who couldn’t hitting others is listening.

We saw the hematologist.  I was the first family documented in the world for a rare disease.  I know doctors have to bring up all possibilities.  When her iron levels were normal and her blood cells were small.  They had to tell me the other possibility that she was a carrier of a blood disease, if the cells did not grow bigger after another month of iron.  I literally couldn’t breath at times the day of the appointment.  No one was more happier than me to hear she was fine.

Her behavior improved a few weeks ago.  Something clicked for Joy.  The doctors say the anemia had no effect on her mood.  Where did the 360 come from?  The other week after 8 years to put the crib up, we took it down and put the toddler bed up.  I had to redo the room.  It looks like a “BIG” Girl’s room.  I emailed the leader of the parenting group for Joy’s IVF clinic with all the good news.  When Joy went to dance class all by herself, we canceled the evaluation for Early Intervention.  She need constant consequences for her behavior.  The woman who runs daycare wasn’t doing that at all.  Unfortunately, I blew up at her.   Unloading repressed anger gracefully isn’t my strong suit.

I am trying to stop working split shifts and two jobs.  One, as tired as I am, I can never seem to sleep after working during the day and evening.  Two, it screws up my taxes so bad that I might as well deliver pizza for a living.  We do keep trying to look for a house we can afford.  We can’t find one.  We have an argument now.  Either way, the bathroom is getting done this year.  There is a huge possibility of mold growing behind those walls.  I am not risking our health and well being anymore.

I agreed to take more hours at the better paying of the two demons that I work for.  I cut my hours to once a month at the other job.  My medical oncologist office switched to a new hospital affiliation.  I had an appointment schedule for this year during last year’s appointment.  They failed to notify me that one the doctor is no longer there.  Two, a new hospital took over the practice.  Three, your appointment was canceled.  Monday, I had to work extra hours for a no show appointment on their end.  Then, the next day, they told me that I was a “new” patient and they couldn’t find me in the system.  My anxiety has been high.  Cancer patients want reassurance.  Grant, I do freak out with annual exams from an oncologist and a mammogram.  It is like whew cancer is not back today.  I got very angry.  I called a new cancer center in my town.  The new cancer center said, we have quite a few people transferring from over there.  I called whoever they are now and told them I want my records!  They insist they sent a letter.  They insist it must be my fault.  Well, the “quite a few people” are getting one more.  It was a nightmare to leave work early and go driving out in the snow to be stood up by the practice under a new hospital affiliation!  I don’t really care!  Just treat me right!  I am stressed about it!  It’s not good to be a cancer survivor with no mammogram or medical oncologist  appointment.

Tomorrow, Joy starts at a new drop in child center.  She is staying at her daycare center with the school system hours.  I have enough problems sleeping and remembering my own schedule.  I am not hiring another baby sitter to screw up my schedule.  At times, I didn’t know who hired who.  I am not working 6 days a week to pay someone with that type of treatment.  This drop in place is for childcare when I am in a pinch.  That way, I can do my trainings and get my medical appointment done.  As I have said, I am done complaining and hoping someone fixes it.  It’s about what I can do.  It’s also about me not taking on everything as my responsibility.

My oldest is having migraines.  Now, she looses vision for some time. Preteens are tough.  Unfortunately, chocolate is a migraine diet no-no.  I try the best I can as a prying mother!  (laughing!) I don’t have all figure out, but I keep trying.

These Past Few Months…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


I Have No Idea of What To Do! Happy New Year’s

2017 was quite a year.  I had to confront my husband’s drinking.  He has not drank in over 6 or 7 months.  His recovery has been tough.  We do argue a lot.  I am trying to find peace in all areas of my life.  Twice this now previous year, lumps were found.  I was lucky to hear it’s not cancer.  I quit smoking.

Life has been challenging.  I don’t know if it I have survived chemo.  Working split shifts at two separate places is not working for me.  I can’t sleep.  I drag myself all the time.  Our youngest is having serious behavioral issues at her family day care center.  She can’t stop slapping other kids.  A few weeks ago, she started to run towards the parking lot at the library, while at daycare.   Last thing I need is to loose another child due to her actions.  I made a decision to have Early Intervention come in.  I am blaming myself.  For 17 months of this kid’s life, I have worked 6 days a week or stayed up all hours of the night to fix the house.  There have been times of uncertainty if I was going to stay married in the past year.  Therapy did not work, because the therapist told me she works with an organization that employs me.  I left.  Plus, she only had hours where I had to bring the toddler with me.

I talked to her doctor and the family daycare, which felt it was a good decision to call Early Invention.  I know a little about sensory disorders.  I am not an expert.  Again it’s like the babysitting.  I feel like I am putting a lot of work in to make it work.  I worked a lot of extra hours to get a few days off and I refused to touch the house.  Overall it was relaxing.  We finished intake at Early Intervention.  A family pet’s struggle with cancer is at an end.  We may be making decisions to put the ferret asleep soon.  More doctor appointments.  The last thing I want as a former cancer patient/infertility patient is more doctor appointments.  Life after the miracle baby didn’t happen as planned.  I daydreamed a life loving a baby during cancer treatment.  At times, I feel stuck.  We owe that big bill for conception.  We want to move.

I need to get to bed.  One thing I have noticed and read about is I am very sleep deprived a lot.  So, I actually got 8 hours on my vacation and it’s been one day back at work and I am already not sleeping.  Early Intervention wants her to stay in family daycare.  The preschool Hope went to eluded that they are planning to retire.  We went on a few daycare center interviews.  One is a drop in center.  I am not getting to my medical appointments because her family daycare has school only hours.  We looked at daycares outside the town that my oldest goes to school.  It’s a longer commute for me.  All I want is to enjoy my daughters.  My youngest is no longer anemic.  Her blood cells are small. So, I began to worry because there is a very slight chance her small blood cells may mean she is a carrier of a rare blood disease, which wouldn’t impact her health.  It would be a problem if she tried to marry or have a child with another carrier.

I found a group of parents.  I barely think of her as a embryo donation child.  I was all excited about finding this group.  I feel guilty for everything she has been through with the house needing emergency repairs for 17 months of her life.  I expressed this.  Someone told me in the group that Early Intervention is going to recommend that I immediately go to therapy.  Like that is a punishment?  I had it.  I am gone from the group completely.  Now, I am concern if my youngest ever meets these people will they be mean to her.

It hurt to make that decision.  Of course, the preteen chimes in.  She didn’t tell me she had a “blinding migraine today.” I am going to bed with a list of calls for Tuesday.  One being the preteen’s doctor.  I am fearing daycare next week.  I am asking for a parenting meeting with the family daycare woman.  One second, she seems on board.  The next second, she is saying why is your child running from you like I am doing something wrong.  My youngest sat right down at the one daycare we visited.  She participated unprompted.  I don’t like dropping my child off, when she may be miserable.  My goal is to develop a plan for both the kids.  The preteen may need meds for the migraines.  If the back up child care place works, I can start getting my appointments done.  It would be a lot of stress off of me.  As for the two jobs, I am working to switch to one place and not be at the other one every week.  Sleep, logging off now!  Good night!