Monthly Archives: September 2016

Feeling Stuck

Where does this family go after Joy’s successful birth?  My husband is a good co-parent.  The years of genetic tests, breast cancer, the loss of multiple pregnancies and his refusal to take care of his health problems has taken a toll on our marriage.  It is like there has been a silent divorce not only with him but his family as well.  I was always the prepared one with a plan.  Then our beloved daughter died named Addison died, breast cancer came, two beloved pets died and my mother all within 11 months of each other.  When the cancer drugs and I healed after all the treatment, I realized my mother, daughter and a few things died.  For years, I shut the windows and doors.  On my day off during the week, I would lie in bed the entire school day.  It was like living in paradise and awaking to a war torn country.  Another attempt at putting us back together failed.  I grow tired of this.  I loved you enough to take your name.  Your family sung me a million promises upon our union.  I have stood by you as we became the first documented case in medical history.

At this point, I am back to square one.  My own mother refused to take care of herself and her dementia.  Her clear moments prolonged her diagnosis.  Plus, she never was a real danger to herself until she fell.  It’s hard to see this person has grown this attitude that listening to me is an option.  I am brunt out from my mother almost 7 years later.  I may never have that relationship with him again.  The one that swept me off my feet and inspired me.  I sleep on a camper’s bed.  He has several food intolerances and allergies.  He will not comply with testing.  I should have made him sleep on the couch.  12 years later, I awake to my back hurting every day.  I have been suffering from insomnia.  I look at younger couples that wine and dinning each other.  It’s been 8 or 9 months since I got a hug.  I have no where to go.  Leaving is not an  option.  We co-parent.  I keep hitting this wall of utterly agitation.  I do have the love of my kids.  The dog loves me.  When I hit that wall.  The emptiness awakens… I feel myself grieving all that I promised myself as a girl.

I have been thinking of putting the move on hold.  There are all these huge bills left from un-paid maternity leave, several problems with our house and the embryo donation program.  I need something more than my addictive addicted siblings can give me.

The daycare center for Joy and I have settled our differences. Joy is waiting for a placement at a home daycare, which will save us serious money.  The crisis with the family dog has settled.  I was suppose to stop using Nicotine Gum, but I think I am going to lower the dose and wait for the stress to settle more.   Am I going to be happy in that town next door where Hope goes to school?  I don’t want to say there is no improvement between us as a couple.  However, it’s been quite a few weekends that I felt I bite my tongue.  My payroll was screwed up on job 2.  I only work a day a week to cover activities with the kids and spending money.  Some it I have been saving it because I learned my lesson the hard way with an old commission style job.  The screw up in paychecks screw up my chance to do some trainings in my career path, because in some human services jobs you are required to pay for your own trainings.  It feels like I am stuck in a power struggle between two programs at the hospital. Yesterday, I see myself needing to fight this outside the place.  I was extremely stressed.  I called because I need to know someone cares.  I got a “too busy.” I find myself craving adult friendship and a good hug.  I keep getting nothing.  Our souls do not speak.

This month started with a fight over money.  Things were tight.  Now they are tighter.  We are getting quotes and looking at our options. I am going back and fourth on career choices.  I know what I want.  I have half a map.   Dusting off the old plan to find friendships for myself.  I have found myself back to the original thought.  Save yourself Dame!  I did attempt to have him involved.  It went nowhere.  Done waiting for a super hero!  I can do this myself.

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Life Is Interesting & Ironic…

I am not going to get into this on social media.  All I will say is our beloved dog, Buddy Brian pulled an unbelievable stunt at 4 AM on Friday morning.  It sent my husband to the ER.  I went to work crying hard and begging my vet for advice.  His stunt has ruined our weekend.

Buddy Brian was a piece of that dream with the family mini van that I still don’t own.  In 2009, my husband and I were cautiously optimistic about being pregnant after suffering 5 different types of pregnancy loss.  On October 30th, 2009, I pointed to a mini van on the way to Boston for an ultra sound at a local dealership.  I wanted to stay home and cry, but Hope still need to go Trick or Treating.  History was about repeat itself again.  The Titanic sunk twice.  I looked at the ultra sound screen and thought wow what a family resemblance between this baby and Avery who died from a rare disease.  How does one prepare to become the first documented case in the world?  I didn’t ask to be a case study.  We talked about getting a dog and a mini van for our family.  Soon after that ultra sound, there was no baby to bring home, no dog to walk and I never got the mini van.  The baby known as Addison died a week before Thanksgiving.  My mother-in-law informed me that she wasn’t ruining her Thanksgiving plans to have my husband or Hope over.  This was my first plane crash into my own personal growing disaster.  It was the “holidays” then everyone tried to plan Addison’s burial.  Are you serious?

After Joy was born, I wanted a dog.  I felt so BETRAYED by him on Friday.  We did have one baby boy, who never came home.  Our dog has a nick name, Beagle Son.  I spent the entire day trying to call others and figure out what to do.  Saturday, the family stayed home all day doing housework on a gorgeous summer day, because the “doggie crisis team was coming.”  I cried so hard.  The dog looked me in the face with great concern.   At points, I wrapped my arms around him and cried.  We adopted this dog, who got very little from the breeder.  I spent my Friday night typing up a summary of this dog’s behavior.   Last March, I slipped on smoking again.  I started to quit and I was trying to quit the gum.  I pulled over at an exit and brought cigarettes.  Seriously?  Here we are trying to save for a house to give the girls a good life and he pulls a stunt.  It cost us $350 on credit card.  At times, I cried that I was going to be told to let him go.  At other times, I needed to walk away because I was so angry.  Friday night, I was suppose to go out to a self improvement meeting.  Instead, I voluntary stayed home due to the incident.

Here is the irony of everything.  I was feeling guilty that Buddy Brian was ever adopted.  I had an outstanding relationship with my dog growing up.  She was my best friend.  We never had so many issues.  Her name is now Saint Cindy.  I was so close to her.  I took her to nursing homes and visited the elderly long before there is a certification process for a dog to become a therapy dog.  I was hoping Buddy Brian would complete this program.  He can’t stop peeing on the floor.  In the mist of housework and tears of disappointed, I got an email about a rare disease event in Rhode Island.    The disasters of 2009 to 2010 made me not only question my religion.  I asked God to let me survive breast cancer, which was a common type.  In the names of my lost daughters, I swore to advocate for rare disease if I survived breast cancer treatment.  I had no knowledge that we were going to become the “first documented case.” I spoke to the speaker of the event.  I told my husband, I am going.  Of course, we can’t find a baby sitter in 3 hours.

Meanwhile, I am running around to make sure this former mold infested house is clean.  Our first visitor to the family space in the cellar was the obedience instructor.    I understand a lot.  I see others point of view. Somedays, I wish others would understand me.    My husband and I drove down there after Buddy Brian was cleared with direct instructions.  Hope is so excited, but she can’t go she under aged.  I video taped it.  We went out for ice cream.  I was relieved.  I was suppose to get off the quit smoking product.  We talked the rare disease piece of our journey is isolating and sad.  I don’t know if I should reconnect with real world people.  My grief is so intense for the love of my babies that I could not bring home.   Cutting back on Nicotine has turned me into a demon. I went to my favorite place and reflected tonight for self care.

Sunday, I returned to church yesterday to find  friend crying with those silent tears.  A second friend has separated from her husband.  Here is to hoping….  May we be the only  document family ever for this rare disease.  May Buddy Brian pull it together.  The new house? What will become of my career and my daughters.  What is the balance as a working mother.  Here is to hoping our family finds peace with all the questions facing our lives.   Sometimes, I don’t want to leave and some days sell the house already.  It’s been my home for 17 years.  It was the place the babies who didn’t come home was suppose to come home too.

Can We Grow Up, When It Comes To Social Media?

Last week, the conversation was about weather to sell the house or stay.  It was a long dragged out disagreement at our house.  At points, we discussed ways to save money.  My oldest never went to daycare until 3 years old.  She went to family daycare. I only had infertility testing and got pregnant with Hope, my oldest. It was hard, but I worked part time opposite schedules than my husband.  Joy was conceived after a series of medical bills for the family.  I lost 1/4 of my income switching to per diem position at the hospital to work my former kid job.  There was no paid maternity leave.  The conception of Joy had co-payments from failed treatments using my eggs with donor sperm.  Then, there was the cost of the infertility program on the West Coast and travel expenses for embryo donation.  I think you get the picture of bills piling up.

I threw this idea at my husband.  Let’s switch Joy from a daycare center to a family home daycare.  It’s cheaper.  Some of the towns and cities in my state have unofficial sites called HUBS where you can ask on social media questions.  I did this last summer in a pinch for Hope to have child care.  It ended up I found a child care provider, who worked for Hope’s school.   So, I asked if anyone could recommend a home daycare.  I got some information.  I thanked everyone and moved on.  I forgot all about it.  On one of my social media accounts, you can not even ask me to be your friend unless you are a friend of a friend.  It’s my way of being myself.  People do not understand just because it is 12 years later, I will always grieve the death of my babies.  I have strong feelings connected to my breast cancer and our family being the medical first to pass on a rare medical disease that killed our babies.  It’s the main reason, I surrendered my original account to my daughter.  I couldn’t be myself there.  I moved to a new account surrounded with others who understood.  It’s also how I remain connected to other people touched by this disease.

I bet you forgot like I did about me asking about a home daycare.  Anyways, a family at Joy’s daycare has been touched by breast cancer.  I reached out to the staff and told them to pass my number along.  It was the first time they learned I was a survivor.  I never got to them that I was a survivor.  I just said, I have been through a lot.

Last night, my other account showed a private message from the daycare center owner asking me when I am leaving.  So, I realized oops she is on that site too.  I went and deleted it.  I just told her she got the wrong message.  All of sudden a picture of the deleted post was sent to me via text today at lunch time.  The message had not one connection to the current place.  There was not one thing harsh or anything else.  I was in the middle of some important work at work.  I had to deal with this.  Finally, I questioned her about what she was hoping was going to be the outcome of a conversation about sending me a picture of the post.  It was a horrible weekend last week.  Please let me do my job.  Our dog has been having separation anxiety problems again and peeing on the floor.  He was checked by a vet.  It’s behavioral.  We are still getting use to the back to school schedule.  I have some things to be done at work so I keep hoping to show up earlier and it doesn’t happen.  I have a very short break.  It was spent responding to these text and private messages. Finally, I said look here is our family’s living situation.  There is no afterschool next year.  We are trying to move.  Don’t personalize it.    Here is what I am going to say.  The social media is a gift and curse.  It connects me to families hurting due to rare disease.  Today, it cursed me because someone personalized something that was business only.

After last weekend, we are laying low.  I have Joy’s cold and Hope does too.  I quote Gone With The Wind with a hand at my forehead and a silly dramatic look, “tomorrow is another day!” Don’t let the drama of others steal your serenity!  It is my right as a parent to decide weather my child goes to a daycare center or a family home daycare.  People are not always just stay because.  Nothing was said inappropriately.  I am trying  give the girls a better home.   I am forty something and I really don’t give a damn for any Scarlet!

The Emotional Labor of Labor Day:

This weekend has been a bit of a emotional roller coaster.  There is going to be a management turn over on my weekend job.  I think it’s for the best.  So, I texted the 2 women who  work with me and supported me  the most.  Everyone got a personal call, but me.  My friend also confirmed she is in the process of a divorce.  I was talking to her and all of sudden she just hang up, because her boyfriend called.  The good news is I have been asked to work a few programs over there.  Until the dust clears, I am able to work the other places.

Joy is getting very big.  I had a lot of cancer treatment due to the breast cancer due to the left arm.  I know from tests after treatment there is scar tissue.  I struggle a lot to hold Joy.  I made it work for so long with the infant carrier.  Friday night, I attempted to put the new car seat in.  My husband and I struggled for  a few hours in the driveway.  Finally, it was so late, I gave up.  That is the reason, I started with one car in case there was a problem.  The next day, I had to leave work early for someone to fix it.  Finally, someone explained this to us.  The hospital where Joy was born fixed it.  It ends up I got the best model.  Unfortunately, I drive a small car.  It was the reason we struggled so bad the night before.  The man spent 10 minutes putting in the car seats.  He says to me, “we do this daily.”

Since we had to drive an hour to have the car seat fixed. We went to that restaurant we missed on Joy’s birthday and we went to the drive through for the movies.  Joy is a toddler now.  Sitting still is not her idea of fun.  We had to walk her around the car constantly, until we made it through one movie and decided during movie two that we were too tired.  It was 1 something AM by time I went to bed.  Joy was up 7AM.  I don’t know how this all started.  Maybe it was two people over tired.  He brought up house work and I brought up the new house.  The original intention of us buying the house was to move out, when we saved enough money.  We could only afford a starter house in a violence ridden city.  The infertility came and the breast cancer came and tons of bills.  He says something, I give my heart to clean up this place.  He ups and changes his mind all the time.  My argument is there is no after school at the middle school in the town our daughter goes to school in.  I will not have her take the bus home in a city on the 100 most violent cities in America list.  I understand due to terrorism no place is safe anymore.  I have been working my heart out not sleeping to work on this house to get ready to sell.  We ended up arguing all day over money and goals.  I kept saying how about I just work the entire weekend now for now on.

Finally, after asking him to make the call for marriage therapy for years, I made it myself.  The baby’s daycare handed us a fund raiser packet on Friday.  We talk about this a center is so much more money than the home day care.  The home daycares wouldn’t take Joy as an infant, because I think a baby is more work. I started looking into home daycares again for Joy.   I am not trying to end my marriage here.  I think our girls deserve a better life.  I canceled plans with my aunt yesterday, because I didn’t want to cause any more bills.  We did get to go an island locally.  The tension is so high right now, we had a fight because the oldest asked for ice cream.  He brought her ice cream.  I refused it after that conversation and I had a nap.  I have had insomnia all summer.  I am cutting down the caffeine.  Due to his medical condition, we don’t sleep in the same room.  Gee, due you think needing to sleep in one position near an AC so I don’t kick out the hose may have something to do with my insomnia?   So I told him, I want my own room with a bed (PERIOD THE END.) I am going to stop using the nicotine gum.  Somewhere all this infertility, genetic testing, breast cancer and hearing loss has caused a rip.  We are trying to repair it.  It’s so slow.  Bills are high because in the summer our oldest needs all day child care.  August was their birthdays.  This morning, I told him fine we will just get a condo.  I will get rid of the swing sets.  I feel like he is pushing me to give up on selling the house or to not move.

I got rid of my Facebook account with people I know in real life.  Instead of getting rid of them all together, I handed it over to Hope.  My family is pretty emotional abusive.  I started a new account where I can be a grieving mother openly.  Labor day can be emotional.  It’s the anniversary of me loosing my hair to chemo.  A reminder at times our two daughters are missing.  When Hope, our oldest was in kindergarten, she refused to let me drive her to school because I had to transition to the wig and she was embarrassed. Some years, I get more emotional than others.  Our first daughter Avery would be 13 years old.  I should be dropping her off at middle school.  Addison should have started the first school for elementary.  It hurts.  It comes back.  You are never 100% cured.  I have been working on extra projects for Rare Disease Day.

One of the no shows at Joy’s birthday pulled a stunt.  Hope gets a private message for the mother, my husband’s friend.  His goddaughter got accidently pregnant and gave birth to a daughter, when I was learning about donor egg. The little girl is having a birthday.  So, I said something to her about not showing up for Joy’s birthday.  I work on Sundays.  Literally, no apology, but are you coming to our event.  Really?  I said something to her about it.  It ends up she had to work.  That was fine, but why didn’t you tell us?  I tell her I work so she starts pressing me for an answer about my husband and kids.  I said to her, here’s his cell phone number you need to ask him directly.  Literally no apology.  We are going to different social events.  Time for new friends! Joy walked for the first time too.  What a weekend!