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.

Telling My Truth: Breaking The Silence Of Infant Loss Awareness Month & Feelings

Two of my friends went out of their way to throw me a baby shower at a restaurant.  I was so touched.  My husband and I decided to surprise them back.  Both have accepted my offer to be Joy’s godparents at her upcoming child dedication.

I am reconnecting with friends after Joy’s birth.  I  giggled and laughed my butt off with my dear another friend.  When the kids were out of ear shot range.  I broke the silence of my mind for almost three years now.  I am not trying to cause more turmoil.  Oh my!  What a response!  I am hearing it’s more common than I thought.  That’s what this rare mom needs to hear.

I am trying to go back to some parts of my life that were interrupted by cancer treatment, recurrent pregnancy loss, the death of the babies due to rare disease and my depression.  I loved to sew before pregnancy and when Hope was an infant.  Yesterday, I am scouring the basement for my fabric scissors and fabric pen to start making outfits for Joy.  Our basement has been flooded so many times, it’s hard to find anything.  All of sudden, my eyes became fixated on a white silky infant girl’s  dress.   My eyes remembered.  I grabbed the dress and swaddled it like an infant.  Before the losses and the infertility treatment, at 28 years old, I was in love with the idea of pregnancy and I was so innocent.  It felt like I was swaddling Avery, our first baby  we lost again.  Even almost 12 years later, I find myself grieving her death at times.  She put the initials M,O,M next to my name!  I brought two baptism outfits prior to getting pregnant.  One was for a girl and another for a boy.  We decided to retire both outfits in the toy box that I finished for Avery.  No child will ever wear them.  They are a treasured memory of our innocence.  Let them forever symbolize all the babies we lost.

My husband is behind me arguing that he can bring the furniture up himself.  Our house is small.  What we have been doing to survive the changes is putting furniture in the basement to make room.  Next month we start on cleaning the basement to prepare to finish the room downstairs.  We start the room downstairs in 2003.  We stain the ceiling to give it a wooden ceiling effect.  When the birth defects were discovered with Avery,  I blamed myself for using chemicals down there, which did not cause the rare disease.  (We understand that now.)

I started back at the gym.  I went to the local meditation class. We brought up my mini trampoline for jogging.   I broke out the old yoga videos.  I haven’t written my speech for Joy’s service.  Occasionally, I find my mind writing it.  In another week, invites go out.  My heart breaks because that means I am going back to work soon.  I am still looking for child care for Joy.  We are trying to make the best financial choice.  I don’t know if it is the right time for a dog, because if we get a dog, we are talking petsitter/babysitter, which is more money than an afterschool program and a home daycare.

Thanksgiving At Home This Year: A Ceremony Of Gratitude

November can be a tough month of memories for our family.  My brother moved out after a heated argument with my dad.  My mother lost her ability to walk due to a car accident.  One Thanksgiving, I woke up in a hospital due to having my thyroid removed.  I was 19 years old and facing the possibility of thyroid cancer.  Years later in 2004, I fell on my knees sobbing loudly at my daughter’s grave begging for another child.  I had no job or child in my womb.  I had just started the process of a fertility evaluation.  We never would go pass the fertility evaluation process.  On December 1, 2004, I learned I was pregnant with my oldest daughter Hope, who is in 5th grade.  The following year, the reverend at our church  recommended having Hope’s Child Dedication  (a welcoming ceremony into our church for babies and children) on the Sunday before Thanksgiving after hearing our lost story.  We celebrated Hope’s life in 2005.

Fast forward to 2009, after struggling 18 months to get pregnant and personally saving $5,000 to pay for the medication,  the first lost of a series happened.  Our daughter Addison died one week exactly before Thanksgiving.  My mother-in-law refused to take my husband and my child for Thanksgiving that year because she had “plans.”  The following year 2010, my daughter had died, I had breast cancer and my mother had just died.  I was very depressed.  I decided to work for Thanksgiving.  I was schedule to have my last chemo the same week. Two days before Thanksgiving, the refrigerator stopped working due to an electrically problem.  It cost us quite a bit of money to fix the electrical problem in our house.   I lost all my hair and I was overwhelmed all the time due to the losses of the year.  Remember all that fertility medication?  The leftovers was destroyed due to the loss of power.  I was trying to work and take care of a kindergartener.  My husband and friend helped.  My in-laws were no where to be found.   I didn’t dare that year to ask my in-laws for help since my mother-in-law snapped at me the year before.  Instead, I threw a simple diner together and I had a friend over with no family.

For the past few years, Thanksgiving depresses me.  My mother always had Thanksgiving diner with us.  The last Thanksgiving, I could have had with her, I didn’t.  Addison died.  My mother-in-law took things into her hands, when I asked her to take my husband and child.  She began to yell at my brother and sister.  My sister took my mother.  We ended up at restaurant.  I painted a smile on my face for Hope, I was dying inside.  Last Thanksgiving, I was preparing to travel alone to the West Coast for the embryo donation cycle.  Thanksgiving makes me miss Addison, Avery, my first and my mother.  So, for two years, we went to a hotel on the Cape Cod and spent family time together.

It’s now 2015.  I compare the events of my life like my own personal Katrina or I have called them my own personal Twin Towers.  I am not writing all the disasters that occurred but the three main ones.  The last anniversary of the series of losses will happen this month.  The anniversary of my mother’s death will happen on the 17th.  I kept telling people about wanting to have Joy’s Child Dedication on the Sunday before Thanksgiving.  So two weeks before, my scheduled C-section, I requested to the church to have the Child Dedication the Sunday before Thanksgiving.  Hope and I have been baking something every week to prepare for it.  (I am putting it in the freezer.)  I am working on a “functional relationship” with my in-laws.  I don’t want my girls to grow up in a divorce family atmosphere when my husband and I are legally married.  I also don’t want to ever be as close as I was to them.  I trusted them with my heart and soul.  They hurt me.  I am polite, but I will never bare my soul to them.  I made Hope’s child dedication dress.  The picture is the fabric that I picked to make Joy’s dress.  I also got a job offer last week.  The job doesn’t have benefits, but it has a set schedule with a good salary.  I am happy because I am going to be able to keep my job working with kids and my per diem job at the hospital.  I didn’t want to leave either job, but we were struggling on the income from both jobs.  I learned my hospital job hired new staff and they don’t need much per diem (fill in/substitute) people.  I will start the new job the week of Thanksgiving.  Two women at work went out their way to make sure I had a baby shower.  I plan to ask these women to be Joy’s godmothers.  The Reverend said I could in this type of ceremony have two godmothers.

It’s not that Joy replaces Addison.  I can not ever replace our beloved baby.  After surviving a year of the baby died, breast cancer, chemo/radiation and my mother died, I have a lot of gratitude for being alive and the lives of both my girls!