Monthly Archives: May 2014

How Has Infertility Effected Me?

This is a question from a friend on Twitter.  Before we go further, please note this is a secondary infertility story.  It’s been 11 years of trying to have the family I want.  Our story is very complicated.  There are three awareness ribbons that are our family’s story rare disease, breast cancer and infertility.  It’s hard to separate the three issues.  Here is the condensed summary: At first they were trying to figure out if we could have a healthy baby and the reason I couldn’t get pregnant.  Our first daughter died a day after birth from a rare disease. Another mother who lost her son to the same disease compares the chances of having it like  “being struck by lighting.”  I have been pregnant 6 times.  I lost most of pregnancies in the second trimester.  I have lost babies from 6 weeks of pregnancy to one day after birth.   We were in treatment for infertility for male infertility to recurrent pregnancy lost.  We were the first documented case known at one time to pass this rare disease unknowing to our babies.  We do have a healthy 8 years old daughter, who I am grateful daily. 

After the still birth of my last baby, it became clear that there was a genetic cause.  I can’t tell you how many years we spent at a fertility specialist and geneticist office.  Then, I was diagnosis with breast cancer.  I decided not to save any eggs as I went through chemo because we never thought we would know the answer.  Two sessions into chemo, I learned I could have a baby, but it was too late.  Now the infertility issue is genetic, male infertility and female egg quality.  I am 40 now.  I started at age 28.  Our next step is to board a plane and fly out to the west coast for an embryo donation.  Donor embryo, sperm or egg is not covered by insurance. 

Effects:

Self Esteem: I feel different all the time.  I struggled with guilt and bereavement.  I also stop telling my family, when I need lost another baby.  They didn’t know I was pregnant or getting another procedure because the baby died.  I wanted control.  I took over the counter meds to have another.  I did crazy things like diets etc.  There is a different story of why I have always felt different, but let’s keep it short. I have been hit by lighting so to speak too many times. 

Relationships: “Be grateful for what you have.”  I hate that sentence.   For some reason why do we not let people grieve.  The babies did not die yesterday.  Every now and then, I see something that rekindles the grief.   My husband and I did not come from the classic family upbringing to say this nicely.  We don’t have the same friends.  I walk into a social situation and I am most likely the one in the back not speaking.  I wouldn’t get into how many pregnancy announcements I have heard over the years.    I asked one person to be a surrogate mother, when I went through cancer treatment.  She declined.  I understand why.  She had her own child and named it the same as the baby, who I gave still birth to.  As for my husband and I, we have had breast cancer, genetic testing and infertility.  We are still married. 

Religion/Spirituality:

At various times, I struggle with if there is a heaven.  Especially after loosing the first one.  I have struggled with if there is a God too.  I go church every week, but I would rather not be there.  Too many birth announcements and babies for me on some days. I go to take the 8 years old to Sunday School.   

Holidays/My Birthday/Anniversaries of Losses: Many holidays I had to have an ultra sound or blood work.  My birthday was a sore topic prior to this infertility to my past.  I turned 40 this year.  As a cancer survivor, I give thanks.   I cried, because my eggs are of poor quality.   So many people do not live to see their birthdays.   I miscarried during Christmas one time.  One baby died a week before Thanksgiving. 

Our Daughter:

Our daughter has had difficulty at times coming to terms with my last still birth.   She was 4 years old at the time.   She comes home crying because so and so is a big sister/brother.  Why was it her sister who had to die?  When our we going to have a baby?  Her summer camp is performing at Disney World.  I had to tell her she can’t go, so we can fly out to the west coast for vacation, because mommy and daddy have personal business. 

Financial:

We could live in a bigger house in a nicer place, but can’t.  I am lucky to live in a fertility insurance mandated state.   If the company buys health insurance or a prescription insurance outside our state, we don’t have fertility coverage.  So, we had to cover the cost of medication for IVF, because it wasn’t covered.  The cycle failed by the way.   Sadly, donor embryo is not covered.  Also fertility preservation was not covered.    It costs an arm and a leg to save an egg.  Due to the program out on the west coast, we are saving half the money if we stayed in the state.  However, we still need travel expenses and a loan to take out. 

Career:

About two years ago, I took a lower paying job to be able to make my own schedule.   I have two jobs, which I alternate schedules to make sure money is coming in.   There are no benefits.  I have goals for my career.  Look at the time it sometimes takes to coordinate a cycle.  Now, I am flying to the other side of the country to get pregnant.  I am trying to decide what I want to do when I grow up.  Yes, I am 40 and still need to grow up.  I do know what I want.  I am in the field, but need some training classes.  I am polishing.  Last training class, I didn’t sign up until the morning of.  I had an embryo transfer (last IVF own eggs) which made me late.  Main office said it was okay.  The lecturer didn’t know.  Need I say more?  There is an excellent training in July.  I will hopefully being flying out to the west coast for a fresh embryo donation. 

So, I think that is my summary.  I do have 3 people, who are supportive in the real world, who know why I am going to the west coast. I have a larger group of friends, who only know it’s an advance fertility treatment.   The child will be told about the embryo donation.  However I am not sure if everyone would be so supportive or treat the child differently. 

Coming To Terms With The Grief Of Mother, Who’s Children Died From Rare Disease

I wanted to write this blog for weeks prior to Mother’s Day.  I am going to be honest with you.  This is a very sensitive topic for me, so please respect what I am saying.  Upfront, the number one question I get a lot is who is carrying the bad gene.  This is private matter of our marriage, so I want to thank you for not asking me this question.  Avery was our first daughter was born with a rare form of dwarfism. Our last baby Addison was born still due to this rare form of dwarfism.   There are multiple birth defects involved.  Let me get to the main one that caused the children to die.  Imagine for a second, a rib cage.  Imagine a shape of a bell.  Now imagine a rib cage in the shape of a bell.  Avery and Addison was born with a rib cage in the shape of a bell.  Their lungs could not expand for them to breath.  It is so rare.   My friend Ann, who’s son Andrew died with the form of dwarfism, compares it to being stuck by lighting.  Ironically, I have been stuck twice.  After Avery’s death, I was convinced that I did something wrong.  Guilt is an emotion, I struggle with.  I was so desperate for finding out, which one of my actions or inactions caused their deaths.  I wanted control.  I felt shame and loneliness for their losses.    After 10 years of surviving repeated tests, I can not tell you what profound emotionally pain these losses have brought to both sides of our family. 

Every day, I pray there will come a day that the silence of rare disease, infertility and infant loss will be broken.  I was recently remembering being 20 years old.  I was going to change the world.  How different my eyes are now!   Six months after Addison’s death, I was diagnosis with breast cancer.   Although not proven, I felt the breast cancer tumor had an underlining cause of stress dealing with their deaths.  We need to continue to educate people about rare disease.  For two reasons, one respect of people with rare disease.  Two, look around a high school biology class.  Someone will have a child with birth defects and even maybe rare disease.    I never thought this was going to impact my life.  I was going to get married, have two children and a house.  My introduction to the world of rare disease came from learning my child was going to die after birth.  As a mother, who lost two children, I wonder about the impact of genetic testing on the mental health of the entire family.   When we silence parents about their losses, we are preventing one generation from educating another.   From the second I step in any room, I am aware that I am different.  Thankfully, I know there are others out there.   My favorite painting in the world is a painting called, “The Scream.” This painting just tells you everything I feel loosing two children from rare disease. So, let me end this with a prayer I was taught in Alateen: “God grant me the serenity to accept the things I can not change. The courage to change the things I can and the wisdom to know the difference.”  

Venting: Just Not Feeling This Today

I am just not in the mood.  A few days ago, I kind of expressed my feelings on two matters.  One, I have difficulty dealing with my birthday.  Two, Mother’s Day is not my favorite holiday.  So, I posted this pic on one of my accounts.  Wrong one.  It was true, there is not a day in my life I don’t give gratitude for what I have, but there are children missing from our table.  Immediately, got a message from the cousins telling me off.  I don’t know when you get over hearing your eggs are bad.  I heard this last August.  Some days, I cry.  Last week, I had some days missing our children Avery,  Haven and Addison. I often wonder what they would look like and be doing.   I also missed my mother, who died when I was half way through cancer treatment.  Each of us are on our own journeys.  I have one friend pushing adoption and a cousin telling me to “get over it already.”  Oddly, I was born within a few days her infant child died.  There were some messages back and forth between my cousin and I.  I thought we had an understanding.  Then, I see she tired to post a big Mother’s Day message on my account.  Listen, some years, I feel like this.  I don’t want to tell them about embryo donation because they would treat this child differently.  I don’t want to explain why we are traveling to the West Coast.  My husband and I are in a different place.  It’s been 11 years of different infertility treatments and genetic tests.  I am tired already…  Before Addison died, I suppose to get a dog and minivan.  Well, baby or no baby, I want the dog.  Woof!  Until then, please let me take my own journey.  It was not that I was diagnosis with breast cancer.  It was coping with loosing my fertility due to treatment, the death of Addison and finding my mother dead from natural causes all within a year of each other.  I truly believe a miracle will come from these ashes even if it is just a fluffy cute one that needs a collar and a leash. I do have a sense of humor. Sometimes, I am going to tell you as happy as I am to not be in limbo about fertility treatment. There are times, I am scared about that West Coast Program, because I hope to become pregnant. There is a lot of dust to clear from the number of failed IUI and IVF procedures so far. A lot of our lives have been changed to make this happen. My job is supportive of me saying it’s a family matter. Is it July yet?