Monthly Archives: September 2015

Meditation Exercises Bring To Light: Career Vs. Family Vs. Spirituality

Last Saturday, I interviewed for a job.  I was immediately offered the job.  In many ways it would help us for me to take the job.  I have been working a commission style job without benefits with kids for a few years now.  I have a career goal to work with kids in a school system.   Lots of time goes into an IVF cycle even when it is negative pregnancy test.   It took a lot of me to coordinate embryo donation on the West Coast.  Most my days off were in silent meditation, appointments or in phone calls.  The test is not done for me to get the license to work in a school.  When I in meditation, I had two nagging thoughts, my daughters and the offer letter on my email.  I need to work on the offer a bit.  I spoke without thinking about work schedules salary requirements and child care costs etc.  I am also going to say that I am very sleep deprived at times.  My oldest daughter has multiple activities and I forget them at times.  I totally forgot the week after I start this job that my daughter has a Christmas performance at her dance school.   Last year, I ran through the airport to see it, when I was in the embryo donation cycle where I got pregnant with Joy.  My husband wants me to go for the higher salary.  There is the guilt.  I worked so hard for this little one.  Now, I am going to drop her off the local daycare or entrust a baby sitter?  I love what I do for a living.  The pay is low.  I am calculating the cost of a baby sitter and day care.  Daycare for Joy by herself will take half my income.  Some baby sitters are looking for $5 less than I am making.  Thankfully, my husband has a good paying job.  My hospital style job hired more staff on the weekends so they won’t be needing much of the fill in staff.  It was the same dilemma, when Hope, my oldest was born.  I finally worked the weekends and my husband worked the weekdays.  The worst the new place can say is no and take back their offer.  Even just writing this blog, I am seeing this pattern.  I get into my to do list that I forget the spiritual side, that was a recurrent theme last night.

Today, I finally got the screening appointment for my oldest daughter to be screened out for NF2.  They can’t see her until February.  I am hoping some how she will not have this genetic disease.

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The Crossroads:

Recently, I was thinking about all the people who I am contact with through social media.  I thought of this blog and every topic covered.  I am blessed to have my two daughters now.  I am not in active cancer treatment. Life is about challenges.   I have goals in life.  I have been touched a group of people that I do not think I would have this opportunity in real life.  As much as a blessing my two children are…, I am aware of what it was like for my days as a bereaved parent or what it is like to fail a cycle and hear a person’s happy news.  Some people, I know due to breast cancer, rare disease, infertility & pregnancy/infant loss.  When I lost Avery and Addison, my two daughters who died from rare disease, I did not always get the love or respect for my losses from the outside world that I would have wanted.  Yesterday a cashier sadly looked at Joy.  I found out from overhearing that her daughter was very worried about her pregnancy after a long battle with infertility.  I told her bits and pieces of my story.  Even through I reached my goal, I remember what 8 years of my life was like!  I will not publish pictures of Joy on Twitter.  I will occasionally publish a pic here on wordpress.

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.”

Speaking My Truth:

As of today, I can drive on the highway.  Today was just a follow up on the C-section, which is healing well.  One of the greatest lesson I learned was to speak my truth.  When I had chemo/radiation, I felt ill.  Sometimes, I went with the flow of life, because I could not do more.  Arguing brunt energy. Cancer treatment can make you feel tired.    I worked full time and I had a kindergartener to  take care of.  I think this is where the anger is stemming from.  I have noticed something over the past year, through meditation and writing on this topic, it is decreasing.   Nowadays there are emotional support questions and birth control questions during OB GYN appointments.  Instead of whitewashing what has happened.  I told her in polite fashion without details how recurrent pregnancy loss, repeated genetic testing, my husband’s hearing loss,  infertility and breast cancer has impacted my life.  I don’t know what 5 years from now is going to look like.  People who disappeared are showing up.  Who knows for  how long.  This weekend was my brother’s birthday.  Both my brother and sister, I have been told seem very disinterested in the fact a baby was born.  Well, they were disinterested in the fact their “baby” sister had cancer.  I did a wonderful job skimming the surface of my reality and just coming to an conclusion.  So, I was backing up the car and leaving, when  I burst into tears.  It’s been so hot, Joy would cry every now and then all the home.  The tears kept coming.  Finally I ended lost in area that I didn’t know with a major headache because I was blocking my feelings..  As sad as my reality is, there is the reason that I didn’t need my tubes tied.  This Saturday, there is another meditation class.  I am continuing to work on my spiritual self.  The girls will be home with their father.

Yesterday, my in-laws scheduled a playdate for Hope and her cousins.  I could just feel the emotions raising.  My sister-in-law named her baby Maddison a year after my daughter Addison had died. I wasn’t in the mood.   Labor day means many things.  So, I lied and said that I needed to rest.  They didn’t call in three years.  Now it is thank you.  What would they had done, if I stopped treatment.  I know my goal is functional relationship with a few people.  If I hadn’t Joy, would you have continued to ignore me?  Some Labor days were good and some were bad.  Out of the blue, I was plagued by remembering how on Labor Day, my hair began to fall out after chemo.  My daughter had refused to be seen with me on her first day of kindergarten because I was wearing a wig.  Memories taunt me a lot sometimes.  I am glad that I stayed home and mediated some.    As hard as it was to watch the door close, I needed it.

My life is filled with other types of happiness.  Closure to my fertility treatment as freed me to peruse other goals and dreams.  Life is not as bleak because someone can’t love me as I wish.  At this point, it is a friendship and respectful. The second, I try to go a level further.  Boom! It’s a fight.  It’s been years now.   Why ask for more?  I am working on several things.  My goal stick was always high.

During my six week, follow up appointment, I need to retake the glucose test to see if I am a diabetic.  I also follow up about seeing a geneticist with husband to make sure how daughter Hope is okay.

Overjoyed To Annouce After Eight Years & 39 Weeks:

It took me one week and a day to complete this.

On August 25th at 10:26AM by planned C-section, I gave birth beautiful girl named Joy Mary Julie.  She has a double middle name.  The name Mary was my mother’s name and a name of multiple family members.   My mother had several relatives with the name of Mary.  My husband’s family owned a popular small business store locally for many years that’s part of the name was Mary.  The store was abandoned since my first daughter was born.  Whoever brought the building started tearing it down this year.  It reminded me how important the name Mary was to both sides of the family.  My mother would have been angry if I chosen her middle name.

The name Julie is the name of my dance school teacher’s name.  She was Hope’s dance teacher as well.  She almost died from cancer as a teen ager.  As an adult, she had cancer a few times.  Her dream was to open a dance school.  As her dance school open, she was diagnosis with breast cancer.  She did not gave up her dream.  A few years ago, she was diagnosis with terminal cancer.  She went to work up until a week before her death.  When, I was diagnosis with breast cancer, I decided to take tap lessons.  I found the article about her studio.  The day, I had chemo, she took me out to coffee.  She was my inspiration during cancer treatment.  A few days before the C-section, I had emailed her husband to let him know if it was a girl, part of the middle name would be for Julie.

Joy weighed 9 pounds & 1 ounce.  She measured at 20.75 inches. I am a brunette.  My husband is a dark blonde. She is a darker blonde than my daughter Hope was upon birth.  It was another blonde.  My soul is filled with rejoice for her life and good health.

One of the topics I think about sometimes is how the family’s diagnosis of rare disease is going to effect Hope as she gets older.  How is this going to impact her decision to have kids?  Will she marry someone who is going to stand be side her if she needs fertility treatment?  My goal has been I want a baby.  When I started this embryo donation cycle, although I am agnostic, I asked for God to decide, which gender was best for the family.  I am very happy she is here, please don’t get me wrong.  However, I have noticed since coming home having sad feelings about having fertility treatment for years and I feel that I have been mourning the loss of my boy babies,  were lost due to second trimester miscarriages.

People are coming out of the woodwork now.  My in-laws completely stopped talking to me about 3 years ago.  They did show up to care for Hope in the lobby.  I did get to tell Hope about the baby being a girl.  Hope cried some semimetal tears through the visit at the hospital.  My husband and I over the past year see puberty coming soon for Hope.  In this past year, I have heard her seriously doubt herself.  So, I was able to say to her that Joy’s birth reminds us all how special each one of us are.  I had little opportunity to speak to my husband’s parents.  They were allowed a special visit.  Joy passed the glucose testing within the first day.  Her first number was off by 4 points.  Then, she repeatedly tested over 40, which the doctors wanted.  It was a thin line sometimes, because nursing is a challenge for me as a breast cancer survivor.  After being a gestational diabetic, I realized how fragile glucose levels can be.  Sometimes, I would choose formula for her, because I wanted the glucose levels to stay normal.    My husband and daughter stayed at a hotel over the border in our state.  The staff was supportive, because I was by myself during the nights.

One other problem cropped up as a breast cancer survivor,  I was born with small veins anyways.  One of my veins collapsed in the right arm.  I have some spots in my arm that hurt if I lean on them.  The IV fluid caused the arm to swell, so bad that the hospital bracelets needed to be cut off.   I had 13 lymph nodes removed during cancer.  My left arm can not be used for any injections or high blood pressure readings or I could develop a condition called Lymphedema, which is the treated arm becomes swollen with Lymphatic fluid.  The swelling in the legs caused by the pregnancy came back and worst the next day.  Even with 2 swollen legs and a arm, it was the best day of my life.

When Hope was born, her birth quickly stopped about being about her.  I did not realize the hospital I chose was the worst one to pick due to several staff members with bad boundaries.  The staff knew people that I didn’t realize like my former boss and my brother.  I also want to be cautious about stating it was the whole hospital staff, because it was 3 or 4 of the people, who had the issue.  I had learned to hard way to trust my gut instinct.  My husband and I have been planning this for months.  We said nothing to my family about the scheduled C-section date.  The last day, I was there, I called and announced it to my Aunt and I wrote a post on the Facebook account with access from a number of relatives.  Then, I allowed the church to post her birth.

My aunt only wants to see me reconnect with my sister.  My sister told planned to see me and decided not too last second.  Her name is Julie too.  I was telling my aunt about how my daughter was named, when she told me that she planned to tell my sister about me naming the baby for her.  It made me angry.  This woman, my sister,  no showed her own little sister for breast cancer.  So I explained the baby had a double middle name.  What happens is….  No one will most likely ever see the second name, because there is one space for one initial.  I told my Aunt not to make her angry with a lie, because many knew my dance school teacher and many people know Joy was named for her.  I told her to only let her know the middle name Mary was picked to honor our mother.  From the messages I am getting from other relatives both my brother and sister are telling people that they don’t care.  I did hear my oldest niece is so excited.  I may try to plan something with my aunt and niece.

My sister in law visited the hospital once.  They seemed respectful of understanding we didn’t want the large crowd of people.  Actually, my sister-in-law is terrified of elevators.  The hospital allowed security to escort her to the maternity floor.  No one was allowed regular access to the stairwells for the safety of the babies.  My husband did try to wake me before she came.  I awoke to her in the room.  She was there for a short time.  Sunday, my in-laws invited the whole family over for lunch.  The conversation was basic light conversation. I started crying after we left.  I can’t hit them over the head again for choices.  I have said my peace at this point.  I want up not down.   All I want is for us to have a functional relationship.  I am very cautious, because my brother and sister just showed up at the maternity ward for Hope. I trusted them.   At 6 months all hell broke loose.  The one annoying thing was both my sister-in-law and mother-in-law kissed my cheek.  I have barely heard from them in three years.  Hopefully, we can get to a functional level and maybe over time, trust can form again.

Overall, I am doing okay on Advil.   I never needed the other medication.  I was able to avoid it so I can drive Hope to school this week.  My husband went back to work today.  Hope started school yesterday.   The swelling in my legs is going down.  Only one foot is too tight for shoes.  I am very overtired.  I am so gratefully to move on to other goals in my life like looking for a new job and saving up to move away from my city.  I never quite saw how much I gave up to have fertility treatments.  It was 8 years of my life.  We have to pay down the bills from traveling out of state for embryo donation.  I am starting to look at other jobs and think about other goals in my life.  Even the morning of Joy’s birth, it felt like my body was in agreement with the date picked.  I threw up and I had regular cramps.  Thankfully, my husband’s assertive driving skills were on.  We left 15 mins late.  I started throwing up with little warning.  Every jay walker and sideswiping car came out. It just reminded me, we really need to move.  My goal is Hope and Joy right now.  I am hoping we get to move before Joy enters kindergarten.    When we finally got to a national food chain coffee shop.  The women’s room was out of order and the men’s was flooding.  We got there and they were able to accommodate us.  I want to remain in both the rare disease and infertility community to give back.  I feel so grateful to be alive right now.

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