Category Archives: #embryodonation

A Letter Of Gratitude: To Egg Donors & Sperm Donors #NIAW2017

Dear Egg Donor and Sperm Donor:

My youngest daughter was conceived by embryo donation.  I had gone through cancer treatment and my husband could not have any more genetic children.  I will never be able to thank my daughter’s egg donor.  She went through surgery to give her eggs.  There is open contact with the sperm donor, when my daughter reaches 18 years old.

Thank you for the countless medical tests and procedures you go through.  My daughter was born after a string of losses and after I under went cancer treatment.  It was a tough decision for us.  I didn’t want to end my pregnancy life with the still birth of our last daughter Addsion.  My oldest had a tough time each time someone became a “big” sister or brother.  It was a long journey for us to consider embryo donation.  We could not love her more.  She is our own.  I wanted to acknowledge the options an egg or sperm donor give to an infertility couple.  This choice may not be the best option for everyone.  We are individuals on our own journeys.  For you who choose to donate, thank you so much for this option.

Sincerely,

Ellen

 

#NIAW2017 Our story: The Journey of Hope & Joy

I am going to write a letter of thanks to women and men, who are donors.  Before I do, I am going to write a brief summary of our journey.  Fourteen years ago, we decided it was time for a family.  Before being pregnant, I glowed.  The year before we tried, I made sure everything was done.  I visited churches looking for the perfect family church.  I made sure I was healthy.  I brought baby items.  It was time for a baby.  I was so naïve at my precious age of 28.  I thought couples had sex and you just got pregnant.  I completely knew nothing of ovulation and timing.  It was disappointing the first month, we tried.  Nothing.  So, I read online how to get pregnant.  I got ovulation kits and within one month, boom we were pregnant.  At 9 weeks, I had a threatened miscarriage.  I woke up bleeding.  My husband and I headed hysterical to the ER.  The baby was okay.  We made it to the traditional 12 week mark and made the big announcement.  I say this with tears we were so innocent.  At the 18 week ultra sound, we were joking around and laughing.  We were play arguing about if we should learn the baby’s gender.  We were so excited.  The day after the ultra sound, we were heading to London for our honey moon (We couldn’t afford when we got married.  Life was great!

The ultra sound tech didn’t say much.  We were in a good mood.  After the ultra sound, I remarked to my husband, we didn’t get a picture.  The doctor called us in.  I said, “we never got a picture.”

The doctor looked grim. “The baby has multiple birth defects.  I don’t think the baby is going to live long enough to reach birth.” She said.

I can’t remember much after that. I remember screaming “no” like my soul was being shredded into pieces.  I remember falling and the doctor catching me to make sure my head didn’t hit the counter.  We were left through a back door to an immediate appointment in Boston.  I couldn’t stop crying and calling people.  We got the hospital and my husband had to lead me across the parking garage, because I couldn’t find the elevator.  At the hospital, they asked me for my license and for several minutes, I would go into my purse and couldn’t remember what I was looking for.  I begged them at the hospital to tell me that the baby just had Down Syndrome.  I had an amniocentesis test.  I asked them for a picture of the baby.

I came home.  My husband asked if we should cancel the trip.  I looked at him and said, “If the baby is to die before birth, then let’s show the baby the world.” We did go to London during the Bush demonstrations.  I couldn’t talk or breath.  I spent all my money (our cell phones did not work.) on the payphone trying to learn news.  The stress was so high.  We went to the wax museum.  One of the rides took our picture.  In the picture, it was a couple with broken hearts.  I never brought the picture.  I refused to have my picture taken the entire trip.   I went to Westminster Abbey, I kneed before every statue begging for our baby’s life.

Avery was diagnosis with Campomelic Dysplasia. We went through all the trisomy diagnoses.   I was born a rare disease mother.  People voiced their opinions about what we should do.  Our baby was becoming  was becoming a symbol for others about arguments for social issues instead of our baby and our choice.  She was born prematurely.   Avery died a day after birth.  I had never witness a human die.  I felt strong guilt for agreeing to do not resuscitate orders.  I never doubt there was a God.  As I watched Avery struggle for each breathe.  I became obsessed with is there an afterlife? I began to doubt God.  Many friends ended their friendships with us.  I think I hang out with a lot of emotional abusive people.  My own brother screamed at me for crying because, “this was my fault for not listening to the doctors.”

I had flash backs.  I finally left my job because they couldn’t get that I couldn’t be around babies.  I was getting flooded with memories of my baby’s last breath. When I reached out, I was told I was doing this for attention.  So on my last day of work, I did a very brave thing.  Someone brought in a baby.  I asked to hold it.  The memories were flooding me.  I held my composure.  The second, I was out of their sight.  I bite down on my fingers and sobbed wildly.  I kept trying to get pregnant over and over.  One negative pregnancy test after another.  I attended every one of the recommended doctors appointments and I was assured it was a most likely a fluke of nature.  Campomelic Dysplasia was usual thought of to be passed on by a parent with the condition.  Since neither of us had dwarfism or seemed to have dwarfism.  The other way was either my husband  or I had a genetic problem with sperm or eggs.  I was jobless and babyless.  At times, I told my husband that I no longer wanted to work in the field that I loved.  Thanksgiving day, I kneeled before Avery’s grave and begged for help.  I was no longer with the children that worked with and loved.  My Avery died.  My uterus was empty.  So, I kept applying for jobs in and outside my field.  I was going to a fertility center for tests.  Then, on December 1st, 2004, I learned I was pregnant.  My mother-in-law and I wrapped the test as a birthday present for my husband.  I started a new job.  Being pregnant again was not easy.  I played loud happy music to keep my anxiety down.  On August 11th, 2005, our daughter Hope was born.  I didn’t know if she was a boy or girl.  We stopped asking the gender question and gave thanks for a healthy child.

My brother and sister disappeared from my life.  They are very emotional abusive.  My sister was hiding her own pregnancy.  She said to me, when I upon me telling her the news of my pregnancy. “If you miscarry, I don’t want to hear of you crying. Miscarriages are away of getting rid of genetically inferior babies.  We don’t want genetically inferior babies in the world.”

I learned quickly that I couldn’t continue a relationship with my siblings.  It raised my anxiety.  So I let them go.  Weeks before Hope’s birth, they came back.  I was so positive.  Sadly, we hired the wrong medical team for our daughter.  I did not know my brother had physically threaten one of the doctors, when his son  was diagnosis with Asperger’s syndrome.  This doctor was on a revenge quest.  He treated me differently when I was alone.  He was sickly sweet when my husband was around.  It ended up being a blow up.  My brother calling me all hours of the night to call me, “a liar.” I took Hope to a different doctor.  Would you not know they were affiliated with that other practice.  I considered walking away from my husband and child thinking I was the problem.  I could go to doctor appointments alone.  Finally, when Hope was about 2, I had to ask myself who was paying who with the doctors.  Hope is a straight A and beautiful young lady.  She has a new doctor team and there is no problems.  Sadly, my niece around Hope’s age was born to my sister has several developmental delays.

I could write a book.  I was so convinced our losses were over.  When Hope was 11 months old, I decided to have another baby.  My in-laws felt I shouldn’t try because my husband’s sister was trying to start a family.  I got pregnant.  One nap time, Hope’s cross fell and broke in half.  I felt a strong urge to go to the bathroom.  I was bleeding.  I had a natural miscarriage at 6 weeks.  We tried again at New Year’s time.  The baby was developing normal.  At the 18 weeks ultra sound, I was told the baby had no heart beat.  It was my son Haven, who we could never hold.  He had died silently at 16 weeks.

I began to not tell anyone.  We ended back at the fertility specialist for recurrent pregnancy loss.  We had another genetic consult and we were given the same information.  They couldn’t find any problems.  There was a fade theory about MFTHR genes causing blood clots.  I went on Folic Acid and blood thinners.  I had to pay an co-payment of $300 dollars for the blood thinners. We got pregnant again.  It was Christmas time and at 11 weeks, I was told the ultra sound was normal.  A few days before Christmas, there was no heart beat at 13 weeks.  The baby was estimated to have died days after the 11 weeks ultrasound.  I had a D&C two days before Christmas.  We were heart broken.  Everyone was celebrating the holidays, my husband and I were in tears.  The doctor offices were closed.

Shortly after Christmas, I was crying and shoveling the snow off my car.  I heard a kitten crying.  It was 2007.  Lots of people were loosing their homes.  I called out to the kitten, it came to me.  I showed my husband.  We agreed to try to locate the owners later.  My neighbor informed us that the cat was abandoned due to a foreclosure.  We agreed to give the cat a home until an adoptive family could be found.  The cat had a huge abscess on his neck.  New Year’s Eve, I found myself in a vet clinic getting this poor animal help.  I explained we were considering adopting a child and we would care for the cat until a new home could be found.  I spent my New Year’s playing nurse with this cat, who was recovering from surgery.  Strangely enough, the kitten was born around the time, my son, who I lost at 18 weeks, should have been born.  My energy went into finding the cat a home.  A manger at the pet store agreed to adopt the cat.  I was explaining to my 2 years old that the kitten found a home.  She looked at me and said, “my cat!”

I called the manager at the pet store and apologized.  We kept the cat.  He was an all black cat with a white heart on his chest.  My baby’s name was Haven, who died at 18 weeks.  For weeks, we didn’t know if it was a boy or a girl.  I named him Haven because it was a unisex name.  I thought of him safely with his sister.  We named the cat Raven, who by the way absolutely flies through the house to snuggle me.  He is all muscle.  When he jumps on your lap, it’s like when Tigger pounces in Winnie the Pooh.  Trust me, he loves to walk all over you.

For months, I couldn’t get pregnant again.  My husband’s sperm count and quality was low.  We were told we need IVF-ICIS.  (They shoot the sperm into an egg.) The year was 2009, it was tough financial times.  My husband’s bank was sold.  The health insurance covered IVF because it was in a mandatory state for infertility coverage.  However, the pharmacy insurance came from a state without coverage.  It was getting hard to have childcare for Hope for doctor appointments.  I decided to return to work full time, because we needed to pay for the medication out of pocket.  I felt it would be quick and I would have another baby.  So, we finally paid $3000 for the medication through taxes.  Everything look so positive.  I ended up not pregnant.  I didn’t even have enough meds for another cycle.  My husband sperm count returned to normal.  I was crying so hard.  Months of work for no baby.  We began to try again on our own.

On our 10th wedding anniversary, I was very upset and angry.  I learned I was pregnant again.  I was terrified.  All the tests were normal.  At the 18 weeks ultra sound, a resident told me she needed the doctor to sign off on her work.  The doctor returned and told us that the baby had multiple birth defects.  The night mare happened again.  We had after years of genetic tests, conceived another baby with Campomelic Dysplasia named Addison. I rented in this pregnancy a dropper.  One morning, there was no heart beat.  I was induced the week before Thanksgiving.  I lost my job later that year.  Lucky for me, a previous employer hired me.  Avery’s blood in 2004 was flown to Germany to confirm her diagnosis.  The United States had open a lab.

The geneticist recommended we both get tested.  My test was negative.  It was thought that two recessive genes could cause Campomelic Dysplasia.  We decided to start trying in-home inseminations with donor sperm.  At this time, our health insurance was in another state without mandatory coverage.  We tried one cycle.  I began to notice blood on my bra.  I thought a milk duct infection due to Addison’s still birth.

The doctors discovered a lump in my breast.  It became clear that there was a great chance of breast cancer.  The Friday before Memorial Day, I was told I had breast cancer.  No insurance will cover the cost of fertility preservation.  Since it also could have been one of us making our eggs or sperm wrong, which is impossible to test for, I chose to pay for fertility preservation.  My husband’s blood work was lost.  On the day I had my lymph nodes removed for breast cancer, he had his blood drawn.  I started chemo.  The doctors agreed to let me try to use Lupron to save my ovaries.  It put me into medical menopause.  I had chemo and medical menopause.  I was able to work full time mostly.  Two weeks after chemo was started, the test results came back.  We were the first case in the world to be documented with one genetic carrier.  I could have used my eggs.  It was too late.

My mother died half way into chemo from natural causes.  I found her dead.  I brought a bib that said my mother is a breast cancer survivor.  I wanted to hold on to my dream of another baby.  In 10 months, I lost my baby, got diagnosis with breast cancer and lost my mother.  I would bring the bib to every cancer treatment.  I would cry into the bib.  Somehow someway, I was going to be a mother.  My relationship with my in-laws fell apart.  My sister-in-law declined my offer to be a surrogate mother, which I understood.  During Hope’s 5th birthday party, I learned she had a baby named Maddison.  The names sound so similar.  After breast cancer treatment, I began to have anxiety attacks.  The thought would just enter my head, my daughter died.  I also had flash backs of Addison’s death and my mother’s death.  An old obsession resurfaced.  Is there a God and afterlife.  Six months later, I tried to go back to fertility treatment.  I was told to wait for a year.

I started buying donor sperm through a bank and tried to inseminate myself at home.  Finally enough time elapsed, so I could return to fertility treatment.  The two IUI’s failed.  We tried 3 rounds of IVF.  My husband only accepted job offers with companies who we checked out their health insurance.  In March 2014, I failed my last IVF cycle with my eggs and donor sperm.  We had been looking into all options for egg donation.  Please note either egg or sperm donation is covered in any state.  I started looking into options out of state.  In my home state, it was $50,000.  I found an embryo donation program on the west coast that combined donor egg and donor sperm for embryo donation.  Please note this is not left over IVF embryos.  I began to fly out.  I had to keep everything hush, hush.  It was rumored that I was moving to the West Coast by friends and family.

The first cycle failed.  I tried a fresh cycle, which wasn’t easy.  IVF is hard for us.  We have to come up with excuses.  It was really hard to explain why I had to just pack up and fly out.  On August 25, 2015, I had gave birth to my daughter Joy.  She is a beautiful classic toddler.  Infertility was 13 years of my life.  I don’t miss the silent tears of a failed cycle.  I don’t miss googling if standing on my head will make me pregnant.  I don’t miss trying to stand on my head.

I stayed in the field that I loved.  I was able to return to working with children.  I have a specialization in substance abuse counseling.  My job is mom first.  I have been able to find jobs to work around my children’s schedules.

I don’t forgot my journey.  I try to be available to other families with rare diseases.  I tell my story.  Not for pity.  I tell my story in the hopes of someday, we find more cures for breast cancer, infertility and rare disease.  I want there to be a day that I hear Ms. C, Avery and Addison would have had better quality of life if they lived now.  I don’t want other couples to be the first in the world.  I am mostly agnostic now.  I have trying to catch up on building friendships and making my own family.  I accept my family and in-laws as they are.  I also believe I am the captain of my soul.  I made a promise to God that I would use my breast cancer status to improve life for those with infertility and rare disease.  I also try to advocate for cancer patients.  Most of all, I am mom first.

 

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.

August Already? The Birthdays of The Rainbows

It was July 2006, when my husband and I were preparing to celebrate our daughter Hope’s birthday, we decided to have another child. Our first daughter Avery had died from a horrible rare form of dwarfism known as Campomelic Dysplasia. None of us knew it was going to be 9 years later until we brought home another child. We had to weather tougher storms and build our own ark. We battle recurrent pregnancy loss at 6 weeks, 18 weeks and 13 weeks. Campomelic Dysplasia hit our family again, our baby Addison died. I was diagnosis with breast cancer and in the middle of chemo, my mother died. At times, I wonder if I would drown in the sea my own despair. I remain hopeful. I cooperated with cancer treatment and I had chemo and radiation. Afterwards, I told my repeatedly cancer treatment team that I was going to have a child. The damage was done to my ovaries by a combination of age and cancer treatment. We needed an egg/embryo donation. We ended up flying across the country and our second daughter Joy was born within a few months of me celebrating my fifth year as a breast cancer survivor.

Birthdays have been a bit of a sore spot in our family. Family members deliberately do not show or attempt to make our child’s birthday into their agenda. Hope is turning eleven and she is aging out of a birthday party. At first, it was a disaster of coordinating an activity a date with the mothers of her friends. I ended up switching work dates and switching her mall activity with three friends to another date. I am taking her birthday off and she is picking something to do with us as a family. Then, we are going away for an overnight at a hotel she wants to visit. This leaves Joy’s birthday. Many people have seem to leave our lives over the past few years. We have been working on the house since last April to bring the house back to presentable condition. We ignored so long to go to doctor appointments and to pay for infertility treatments. Last weekend, we again tried another trick to kill the mold problem found, when our floors were done. Last Monday, I burst into tears. Many nights, I washed the walls and floors. After speaking with professionals, they feel the mold will die with the dehumidifiers on. I am simmering vinegar to neutralize the odor in the air. We brought a mini crock pot to neutralize the cellar. My husband and I are healing from the damage of all the years to our relationship. We just started on yard work because we spent so much time in the house. Hope is finishing with Art Camp this week and I am looking forward to spending time with her on Mondays and Tuesdays. I just started a new job and took vacation in April to start fixing the house. I took the girls birthdays off, but I will be working through. My husband took the last week of August off to spend time with the girls.

This leaves me with Joy’s birthday. My husband’s family had a separate birthday for Hope already. We decided to have a family barque and to celebrate Joy’s birthday. It’s more a social. We asked everyone to bring a side dish and to make a donation to cancer treatment or the rare disease organization we picked instead of buying gifts for Joy. I brought a couple of sprinkler toys and sent invites. We will see who comes. It’s a long day and I told people it was okay to drop in between the hours of 11AM to 7PM. Hopefully, it will be a good turn out and we can renew our friendships with several people. I still have a few small projects for Hope’s and Joy’s birthdays.

Meanwhile, I continue to work on career goals for myself and working on training Buddy, the family dog. I am hoping to resume some training classes that I put on hold due to the fertility treatment. I am hoping to get Buddy trained as a therapeutic support dog.

Thinking About Summer

So many summers were ruined by my diagnosis of infertility. I learned before a family vacation to Lake George NY that my eggs were… How to say this? First word was that comes to my mind was the word Bad. So let me try this again… My eggs had low chance of conceiving a viable pregnancy due to my age and chemo treatment. That sounds better.

I took it really hard. We had been trying with donor sperm already. It came to a head on our last day of vacation a few years ago in New York. Our cell phones were struggling in Lake George. I couldn’t find a pen, we were at a pool. Literally grabbed my lipstick and wrote the number on my hand. Insurance declined the doctor’s request to do a procedure called ICIS. (The sperm is shot into the egg instead of it being allowed to swim around in a petri dish.) First, I am frantically looking for paper and a pen. I am thinking people at the pool had several thoughts about me. Look at the woman at the pool writing a number on her hand in lipstick. Hot date? No, the fertility accounting department called me. The vacation got even worst. I decided to let my health insurance have it. Of course the signal kept dropping but I tried from Lake George, NY to Massachusetts. Of course, my heart was broken.

My husband and I had years to prepared and come to terms with donor conception. We grieved it couldn’t be his sperm. I felt myself grieving every pregnancy loss, negative pregnancy test and my genetic self. I also had agreed to medical menopause during chemo treatment. The genetic test was drawn for us and lost during the time I was diagnosis with breast cancer. Later we learned we could have used my eggs. Insurance will not pay for fertility saving treatments for cancer patients. There was no guarantee it wasn’t my eggs fault for the rare disease. So, I knew the results were not good but I choose to try Lupron before chemo for medical menopause. The theory is.. If your ovaries are shut off, chemo will not attack them. I found myself grieving I had gone through months of hot flashes during chemo. I was hormonal 36 and I turned 60 something over night. Not a pretty picture. Then we the chemo ended, it was a rough hormonal journey back to 37 (I had a birthday.) It was all for nothing. I walked through the park sobbing. It was over.

We went home. I woke up in the middle of the night in tears. My daughter had asked to go to the Red Sox game. My anxiety was so high. I was grieving it all… The deaths of our daughters, the loss of using my husband’s sperm, the loss of my eggs, the miscarriages, breast cancer and every negative pregnancy test. At this time, I belong to a breast cancer support group for young women. It happened one of the younger women in the group got pregnant. In my grief, I was struggling. I did say congrats. It was the third text about morning sickness that I lost my mind. They honestly couldn’t get it. I texted them and told them about my grief. I told that I felt I couldn’t be apart of the group anymore. One member texted me that I was “selfish.” My anxiety rose. Then the snoop/friend at my job started texting me. We were in the bleachers. I am not a fan of any sports. I wanted to cry and scream. Here were all the happy people because the Red Sox were heading to the world series. Here I am asking, is it over yet? My husband said, they just played the national anthem. I drove them nuts…. What’s and inning and how long does it last? How many inning are there?

I struggled with smoking after bad news about pregnancy tests and fertility treatment. I felt like everyone in the bleachers were caving in on me. Finally, I left to have a smoke because my anxiety was almost to hospital level portions. I was fighting the tears without little success. I don’t know who the boss is at Fenway. I asked for them to show me where to smoke and he was kind enough to let me smoke with the employees.

Thankfully, Maria, my good friend was around and we were private messaging each other. We have never met in person. We had a pregnancy loss at the same time in 2007. She lives in Michigan and I live here. We follow each other in social media.

I survived and left the breast cancer support group. There were other issues with the group. Hope was five when I had breast cancer. One woman had breast cancer before her daughter and decided to never tell her daughter. She told her daughter we went to school together. My daughter just had to ask tons about going to school with this woman. It put me in a uncomfortable place, because I try not to hide anything.

Another summer later, we never knew when we were leaving for treatment to the embryo donation program on the West Coast. Last summer, I was pregnant due any day now. I am telling you the Red Sox story for a reason. Hope asked to take dad to the Red Sox game again. Like I didn’t ask when was it over enough? I decided I owed them that. We are going.

This year is different. We are scrubbing walls and finishing the family room. I have been doing this since February. I haven’t gotten much sleep. I started the family room when we were getting ready to try in the summer of 2003. No history of any problems. I was glowing about pregnancy not even trying. I was buying things for the baby. Rare disease? Never heard of it. Sadly, Avery died a day after birth from rare disease. I blamed myself. I blamed the paint and chemicals. I refused to ever finish the family room. We are getting close to being done 12 years later. At points, I hugged the painted walls and cried. It wasn’t my fault. We were the first family in this world to be carriers and not have the disease ourselves. Lately, I have been trying to work on forgiveness for the psychological harm I did to myself. I want to name the room after her. All this cleaning and remodeling is tearing me up.

I long for summer. I am hoping to be done with the house soon. We didn’t know the toilet was leaking in the bathroom. The plywood to the floor was replaced. I am cleaning the walls in case the mold traveled. I just wanted new floors. I am excited about the family room soon to be done. Joy is our last child. It’s a full circle of 12 years of our lives. Lately, I have been feeling sad about selling the family home next year. Hope is entering her last year of elementary school. There is no afterschool programs after next year. This city is not safe. Hope was lucky to have a chance to go to school in the next town over. It’s time we live there. This was the home all my five babies that I lost were suppose to come home to. I love the new floors. Joy’s room was painted in murals. It’s going to hurt saying good bye.

I have luggage already with Father’s Day. My father abused us and left. I will be displaying my mother’s picture again as a symbol to honor her again. She did the job of two parents as a married single mother. Yes, I typed it that way. We are talking about trips. I look forward to days with both my girls. I don’t like sports. We are surprising my husband with a Red Sox game. Hopefully we enjoy it! I just started a new job so we plan to do things here and there. We won’t be taken a whole week off together as a family. My husband and I grow stronger as a couple.

Accepting Myself As Different: Upcoming Birthday

Over the weekend, I disclosed a major family secret to one of Joy’s godmothers about how my brother-in-law when my sister was pregnant became verbally abusive.  My sister got married and she accidentally became pregnant too soon.  My brother-in-law had all those major degrees in English with dreams of writing and directing movies.  He works as a security guard.  I had an awesome job as a secretary for a government organization when I was in college.  When I was 19 years old and diagnosis with thyroid cancer, I decided I didn’t want to become a nurse.  I decided on counseling as a career path.  When I went to grad school, I turned down a job offer for a full time secretary position.  I felt this was my calling in life.

I had an awesome mother who married a man with major mental health issues.  This man is my biological father.  As a teen, I read through some of his hospitalization paperwork.  He was diagnosis with Paranoid Personality Disorder.  He was extremely verbally abusive.  You got sick. You were against him.  He verbalized to us his children that we were never wanted.  I had both kidneys fail as an toddler.  I spent 2 or 3 months hospitalized in Boston.  I needed specialized schools to developmentally catch up. Later, it was discovered when I was a teenager that I had a learning disability.  I struggle with the written language.  I love writing.   I was placed a grade behind in school due to my illness.  I was older than the kids in my grade.  I hang out with the older kids.  I idolized my brother and sister who was 6 to 7 years older.  My mother was involved in a car accident when I was 13 years old.  She never walked right ever again.  It lead to a serious of other falls and she died with some horrible form of dementia when I was in cancer treatment.  I have felt different all my life.

My mother had a dream.  When I was 18 years old, my father wanted me out of the house.  My mother told him to leave.  I still had a year of high school.  I was an honor roll student.  My grades dropped so bad.  I graduated with a D in high school.  I was always concerned about my mother because we needed a restraining order against my father.  It was Alateen that saved me.  My grandparents were the alcoholics but I found a group of loving and accepting people.  I graduated and started working in my field.  Then our first daughter died of a rare disease.  I lost my job.  My brother and sister verbalized some horrible statements about her death.  Every month was a negative pregnancy test and a empty womb.  Then I give birth to my daughter Hope.  My brother and sister showed up at the end, when there was proof she was healthy.  Immediately, we had problems.  Worst of all, my brother had physically threaten someone, which I didn’t know.  I left my daughter Hope in this person’s care.  My gut was sending warning signals.  Others were telling me that I was over reacting.  I listened to others.  It was a major blow up.  I made the decision to end the relationship with my brother and sister for Hope’s sake.  They didn’t come to help, when I had breast cancer.  My mother died.  I never hear from them again.

A few years ago before my last cycle with my own eggs.  My aunt called to tell me my father died.  I have been searching for information on this off and on.  It’s hard when you are told you can’t have children with your eggs.  It’s own grieving process.  I stopped talking to others at church, in the neighborhood and at work.  I cried when others were not looking.  I was polite, but I barely spoke to others.  More relationships began to fall apart.  I use to lay in bed all day and cry.  I looked at my career and my life and I saw everything I didn’t get.  Some of the old thoughts started surfacing. I didn’t want to celebrate my birthday anymore.  When I turned 40, my last cycle with my eggs failed.  We had one affordable option across the country known as embryo donation.  It took months of financial saving for this.  Joy was not the typical embryo donation.  The program uses both egg and sperm donation.

40 was tough, I have no family outside of this house.  My sister sends all our birthday cards late on purpose.  She has never seen Joy, but she sent gifts at Christmas.  Both my girls were born in August.  I was trying to contact my friend about the embryo donation program.  He committed suicide two weeks before my 40th  birthday.  One of the ways, I survived growing up was to stay very close to the family pets.  So, two of my cats died about two weeks apart around my birthday.  I feel the emptiness of my siblings not here.  On the maternity ward, everyone had visitors.  I had Ken and my daughter.  Easter is this weekend, I hear people saying I have 20 family members coming.  The four of us are going to a restaurant for branch.  It’s my birthday weekend and a lot of people will not remember.  My brother and sister, whom I idolized as a child will not be found.  My heart is broken.

Over the past few years, I am trying to move from crying about what I don’t have.  I am focusing on my children.  I go to mediation class.  I don’t tell people my life story.  I tell bits and pieces to see if I am accepted.  Monday is my birthday.  I miss my friend who died.  I miss my mother, brother and sister.  There is this whole.  I had beliefs my life would be so different when I grew up.  I am connecting with other through meditation and spirituality classes.  I said to Hope about a Saturday daddies book baby group.  She is young.  She told me to join a new mother’s group.   I am worried I would not be accepted.

At my age, I done forcing others to accept me.  I am the mother of two angels, who died from a horrible rare disease called campomelic dysplasia. I am a infertility survivor.  I survived recurrent pregnancy loss, male infertility and female infertility.   I am a young breast cancer survivor.  I am turning 42 years old.  I don’t have a big family.  Everything I had is earned.   I get intense sadness especially during my birthday.  I am getting to that point.  I am different.  I am special because in the words of others with rare disease, I am a rare mother.  I deserve to be treasured.  I have been crying for weeks about my birthday.  I hope I can get to that place of acceptance, gratitude for what I have and see myself as a beautiful person.  Amen from the Agnostic!

 

 

 

 

Personal Reflection On Rare Disease Day February 29th 2016: The Irony of the Gerber Baby

Rare Disease Day, I was elastic.  It was the one day a year, I get to show the world my other titles as Avery’s and Addison’s mother.

A week earlier  on Avery’s 12th birthday, I had a stomach flu.  A few days later it went away.  At 5 o’clock on Rare Disease Day, I had intended to write this blog on Rare Disease Day, instead the stomach flu return with revenge and I was texting SOS messages to my husband who was stuck in traffic because I was so sick.  Finally last week, I got rid of this stomach flu.  I finally back to a normal diet and back to myself.

Avery was our first daughter who died of #Campomelic Dysplasia.  She was due in April 2004.  We learned she had multiple birth defects and she was predicted not to survive the birthing process.  I went into preterm labor on February 21st at 5AM.  Due to a condition called Polyhydramnios, (too much amniotic fluid caused by a baby having multiple birthdefects), Avery was born on February 21st, nine weeks too soon.  My sister struggled with preterm labor due to a Incompetent Cervix.  This has not been my issue.   We had ben warned about this for weeks, so my bags were always packed.  I carried several documents about Avery’s condition incase of emergency.  We rushed to the local hospital.  I got the preterm labor meds.  Then, I was transferred by ambulance to a Boston Hospital.  I still struggle with memories of the ambulance ride from time to time.  The labor had stopped.  The ambulance told me that they would take the scenic route due to Boston’s Big Dig.  As the doors of the ambulance closed, I cried.  I realized I was leaving home.  My husband had to drive himself.  I told him to go slow and to get a coffee, because we didn’t need accidents.  There we were on the scenic route.  I can remember seeing the other side of the entering my city sign and crossing into the neighboring town.  I went back into labor.  The ambulance drivers got off the scenic route and lights flashing all the way into Boston.  The entire time, I did not know if Avery was going to be born dead in the back of the ambulance.  We made it to the hospital.  I had a C-section.  She lived a day and died.

I left the hospital on February 23rd.  I signed myself out against medical advice.  I didn’t want to be at the hospital anymore  My arms and uterus were empty.  My shoes had been lost in the transfer process.  The hospital gave me these foam slippers.  It was hard navigating myself in the snow.  For years, I couldn’t drive down the streets that the ambulance went.  A few times,  on the highway, I will burst into tears at the site of an ambulance going to Boston.  I have learned to cope by praying for the people in the ambulance.  As agnostic as I am, I still pray.

For years, I struggled with what happened to Avery. It’s when I started questioning God.  I had the worst people around me.  I was told to GET OVER IT.  My own brother told me to quit crying about it because the doctors told me what has going to happen and I choose to continue the pregnancy.  I had never seen a human die.  For an hour and a half, my husband and I held Avery until she died.  People could not understand why I couldn’t just see their babies. Some felt I should been able to hold a baby.  My biggest issue was I couldn’t be happy for others.    My brain was flooded about memories of her death.  Just to show them all, I pulled myself together held a baby to show them I could.  I sobbed uncontrollable when they weren’t looking.   I planned everything.  I took prenatal vitamins and careful planned the pregnancy for a year.  How was it our family was chosen for this rare disease?

The doctors do not feel our oldest daughter Hope will have children with Campomelic Dysplasia. She was screened out for NF2 a different rare disease.  All those years of worry are gone.  There is Hope in Hope for the next generation. Joy is unaffected since she was conceived embryo donation.  I am issuing my concerns.  I went through all the emotions and shock a parent does, when a child has multiple birth defects.  I went through years of a lot of feelings of self blame and guilt after Avery and Addison’s death.

People see me holding my baby daughter.  We think Joy has red hair.  She has these sapphire blue eyes.  People say to me, your daughter Joy is  perfect like the Gerber Baby.  How ironic…  I felt both my children Avery and Addison were perfect to as well indifferent to their fatal diagnosis.  All my babies were perfect and loved.  I pray we increase resources for parents, family, and patients going through the being diagnosis with rare disease.  I pray more medicines and procedures are found to help those with rare disease.  When I was diagnosis with breast cancer, I made a verbal agreement with the universe to remain an advocate to those effected by rare disease.

 

 

Rare Disease Day: Meeting With Genticist Gave Hope Some Hope!

My second daughter died from the same rare disease unexpectantly.  After our first daughter died from Campomelic Dysplasia, we did everything we were told to do.   It was not expected to happen again.  We found out Addison had the same rare disease the day before Halloween in 2009.  She died a week before Thanksgiving.  We had our blood drawn.  A tube of blood was lost somehow.  Months and months went by.  The unthinkable happened.  In May, I diagnosis with breast cancer.  They said we would never know who carried it.  We went to the RE and none of the fertility saving procedures were covered by insurance.  Our health insurance barely covered any of my breast cancer procedures.  It was a bad economy back almost 6 years ago.  My husband had to switch jobs quick to cover cancer bills.  His bank was owned by a foreign bank who barely gave him time for his daughter’s death.  They were giving him a hard time about time off for  my breast cancer surgeries.

That year, we survived one day at a time.  I had just lost my job, when I decided to go back to the hospital job.  I was there one month, when I was diagnosis with breast cancer.  The hospital helped me even through I had only been back a month.  There was not time to think these things out.  The family 11 months after the death of our daughter suffered another loss.  My mother died.  There was cancer treatment, work, kindergarten and our living daughter’s activities.  We also lost two precious pets that year.  When it was discovered our children were dying due to a dominant carrier, I was afraid for our living daughter’s future.  I did not save eggs based on cost and genetic information.

I am not a trained geneticist by any means.  I don’t want to get into long explanations that I am not qualified to give.  I am to focus on our emotional responses mostly.

There were several events that lead to our decision to go for genetic counseling.  My husband’s mother insisted she had NF2, which occurred a month prior to my breast cancer diagnosis.  I noticed my husband lost his hearing.  For years,  I asked him to have it check.  Finally he did last year.  He tells me about this NF2 disease.  I am reading and reading about this.  I am seeing major health concerns for Hope.   I was more frightened for our living daughter.  Our new daughter was conceived by embryo donation so she had no known risks.  I feared no one would marry Hope, our living daughter because of her being a possible carrier.  I worried  it was unclear if she would be a carrier.  We struggled as a couple about getting this appointment.

I don’t have a good relationship with mother-in-law.  My husband’s mother has now ignored me for years.  In our year of multiple losses, I begged her for help.  It wasn’t for me.  It was for my husband and my daughter.  She refused to take them for Thanksgiving, when Addison died because it would, “ruin her plans.” She refused to stay with us for my first chemo treatment.  I got tried of the “nos.” She knew my mother had some form of dementia and couldn’t help.  God bless my mother’s soul.  My mother would try to keep handing me money for me to buy myself something nice.  I couldn’t stop crying.  The first chemo treatment, I did awesome for the first week.  The oncologist was right.  I was struck by sickness and I laid on the bathroom floor of my house without any help within two weeks of the first treatment.  I literally did not know what to do.  I didn’t want to wake my daughter who was in kindergarten.  Somehow, I was able to get up and clean up after just sitting on the bathroom floor being ill.  In the mist, Hope had lost a tooth.  She woke up after it was clean up looking for the tooth fairy.  Mysteriously, a strange breeze came and even in my sick state, we saw the tooth fairy come.

I get stuck in the anger of that year.  Why weren’t you there!  I spoke weekly to my in-laws.  It feels like they choose their daughter over me.  Her wife and the daughter had three beautiful children. Two were born as we had the same due date, but I lost the pregnancy.  This has impacted my marriage in more ways than one.  We are not close.  I choose to peruse having a baby for me and Hope.  Since our daughter Joy was born, we are trying to put the pieces back together.

The fears of all those years were discuss in one geneticist appointment.  I did an outstanding job not crying.  It ends up the dominant carrier can not pass this to our daughter.  My mother-in-law still says she has NF2.  My husband only describe one benign tumor, which is not constant with NF2.  She would have more.  I wept a good long time last week even with this good news for all those years of worry.  The geneticist asked me to ask my oncologist about if I needed further genetic testing for breast cancer.  I have been in genetic testing for years now.  Honestly, I know our other daughter had to see a specialist and we have had a lot of illness in the house lately.  A good day is doctor free.   It’s the anniversary of the death of Avery.  I don’t want to do it.  Genetic testing has it’s own brand of grief.   It’s such a social taboo.  I worry about the mental health of people facing this crisis.

I officially decided to not take the new job.  I am working with my two jobs to arrange a work schedule to do what I love for a living and to be with my girls.  I haven’t told them yet.  My in-laws are so involved in my husband’s sister’s divorce.  It’s been months since they have said anything.  I stay focused on the girls and meditation classes.  I want functional peace.  I may never be able to be close to them again, but I want functional peace.  We have our good days and bad days.  I am hopeful….

 

 

 

 

 

 

The Afterlife Of Infertility Treatment

It was about 13 years ago, I started prenatal vitamins.  I went to the OB GYN, my regular doctor and my dentist to ensure I was healthy.  I had just reach a huge career goal after not passing the first time.  I looked at churches, I found one that I liked.  Yes, I was 28 years old and ready to have our first baby.  It’s like watching the Titanic victims line up to board the Titanic.  We opened this Pandora’s Box called we want children.  We found recurrent pregnancy loss, infertility, rare disease, male infertility, breast cancer and female infertility.  Somewhere deep in that box as the demons were freed our Hope and Joy stayed.  So, we got our dream.  For many years, my hobby was to plan and try again for another cycle.  My favorite motto: Everyday I am googling for a baby.  Maybe next month, next year?  Just keep praying.

One year went into another year and another year.  We broke medical history by becoming the first family to carry this awful disease onto our beloved babies.  We kept loosing babies late into the second trimester.  I spent 70% of my time trying to stay and get pregnant.  Now that our dream has come true.  I see the damage to my life.  I took jobs that I could take time off to get infertility treatment.  I put our daughter into daycare to have child care for  infertility treatment.  I work during cancer treatment because I didn’t want to loose money.  Sadly, we owe years of bills for fertility treatment.  Embryo donation was not covered.  Our daughter Joy was conceived embryo donation.  Our neighborhood has turned violent.  We never updated the house, because we needed the money for infertility treatment.  When my beautiful baby came to the world, I had to put her in day care to pay off the bills caused by infertility treatment.

I am still waiting to hear about the new job.  I have been waiting for this new job for months.  Last week, I went to my inpatient company’s party.  I worked full time at points over the past years and per diem.  I still work with kids commission style.   I am starting to wonder about this new job.  I am not getting Saturdays off, which is important to my daughter, who is on a dance comp. team.  I have no benefits.  I literally could take today off because my husband got his bonus.  I wonder are you settling for less?  Two weeks ago, I stop taking prenatal vitamins.  My baby daughter has been very sick with a chest cold.  She threw up repeatedly these past two weeks. We ended up seeing a GI specialist for her.  The GI specialist thinks it’s the cold and the baby is gaging herself, when she coughs.  She just got a nebulizer last week and she not coughing at night anymore.  I don’t know what the job answer for me is.  I worked so hard to get here.  I do have career goals, when I looked into both my daughter’s eyes.  I just want to be with them.  I want to be the mom that is there.

Today was an interesting.  It was the first uterine ultra sound without being pregnant or trying to become pregnant.  Thankfully, no Fibroids were spotted.  I have been having heavy bleeding during my cycles since having the baby.  My OB GYN thinks I will need meds to control the bleeding until menopause.  Every time I enter the state of Rhode Island, I see a sign that makes me sad.  It has a picture of a baby as a sign that there is a God.  I remember being infertile and burying our children.  If you are bereaved, some question God.  I love my babies Avery, Haven and Addison.  A piece of me died with them.

After 13 years of trying and hoping, I had a baby.  The roads of my life are open.  I see how much I gave up in my life in my quest for a baby.  I don’t know where to go.   I am keeping myself open to all the possibilities.

 

Signs Of Stress In My Body: Renewed Grief

I had some fun during the holidays. May I please be the first to say that I am glad they are OVER! I went back to work way earlier with Hope, my oldest daughter. That return was way easier. This return to work has been the toughest ever. With my daughter Hope, my mother was around. I had the only grandchild on my husband’s side of the family, so the in-laws were willing to help out at least one day a week. I am a different person. Over these years of struggling with infertility and breast cancer, I had to learn to become a one woman cheerleading squad quickly at times. I also had the love of some family and wonderful friendships to give me my daily strength.

I had to get use to dropping my rainbow, miracle, million dollar baby and one cherished daughter to daycare. I believe she is in good hands.

Joy Mary Julie is named after my dance school teacher Julie, who battled cancer since her teen years. Julie never gave up her dream to have a dance school. Her death didn’t stop that. The dance school lives on. Joy was my dream. I was having that baby. Period the end. I stopped talking to everyone over it before I got pregnant. Because if I had to listen to people tell me my answer again, I was going to get angry. Julie’s mom teaches at one of the daycares. The daycare has not been my source of stress lately.

I have had difficulty returning to work at the kid job. I set boundaries. After 8 years of working so hard for a baby, the last thing I want to do is say, “Sorry Joy. Stop crying. I have paperwork to do.” Especially with Joy, she has acid reflux. She is growing at a rapid rate. I may spend the morning just feeding her. I got a different part time job that pays for daycare. This summer it was tough to work a bunch of hours commission style and not make any money. I was in the later stages of pregnancy working two jobs. One job appeared to financial support the other job. Ironic a little? The time I wanted to give to Hope was spent on bed rest due to the swelling or working on work without pay at home. I was welcomed to return one day a week. Immediately, the computer failed. I could book getting “paid” because of it. It’s a lot of money to infant daycare. We had to upfront the money after a unpaid maternity leave during the holiday season. I was assertive with them. The response was to make me feel like I was going to be fired. Then, they left it that way in time for the holidays. No words of comfort. I cried very hard. Now the emails have turn back to business as usual as if this was a poker game.

Our house was falling a part. The electrical problem in the kitchen returned. The wash machine broke. I got a cold of major portions. There was barely time for anything including breast feeding. The new job was not able to clear me on time to start as plan. Lucky for me, I have the per diem job in a inpatient setting. I was able to work the entire month. Christmas Eve, I get the big idea to use the fire place. We ended up evacuating due to the carbon dioxide alarm sounding. I had to wake up both children to get them out of the house. At the time Santa should have been arriving, the fire department came instead. We were lucky and we could return to the house. So many people don’t have a home during the holidays.

Joy had her first cold right after Christmas. She has been teething the entire month. She was sleeping through the night, then she stopped. Last week, she was coughing herself awake. I worked New Year’s Eve and New Year’s Day. We had to take her to the ER. She is okay. There was nothing they could do.

Saturday, Joy was still not 100%. We had plans to go to Boston and we needed to shorten the day. We drove in to go out to eat, see some Christmas lights and come home.

My body has been under a lot of stress. The house is at maximum storage capacity. There has been barely time for housework. We are also working with our new dog Buddy to get him house trained. This weekend, I am teaching my oldest to organize her room, which is always a painful process. She was telling me how this is all a sign that I don’t love her for the 9th million time. I went to the bathroom and the worst fear of a cancer survivor occurred. I saw a small lump on my throat. Cancer survivors live in fear of the cancer returning. I grabbed my husband as my oldest was giving me her speech. Somewhere in the late afternoon, we finally organized her room. I decided let’s go shopping and eat out. I am starting that new job this week that I got 3 months ago. I was having anxiety attacks. Yesterday, I called my doctor first second I could in the morning. It was a long day. Joy had her physical too that day. The doctor thinks it’s a calcification. I need an ultra sound and may need surgery. It looks like my breast milk may have rapidly decreased or it is drying up completely.

If you have been following me for years, you may remember this. After a few miscarriages, I began to have cycle problems. I had to be persistent and write it down for months for the doctors. This was before the breast cancer. They couldn’t figure it out. A biopsy showed an uterine staph infection, which I could have gotten from anything like ultra sound machines or having a D&E. Well, I am having problems with my cycles again. I know it could be anything from the breast feeding to menopause. I got up and I realized I had to change my clothing and wash the stool that I sat on. It happens that fast. At this point, I am calling the OB GYN. I called my husband at the gym to return home and went to bed, when he came home.

Today, I am up. I need to clean the house quickly. I am having our pet sitter walk our dog until I can establish a schedule with the new job to come home during the day. The accidents with Buddy are due to the fact he is almost 2 years old and not neutered. He can’t be neutered until obedience school is over due to risks of infections. We have 3 weeks of obedience school left.

My plan today is to get done what I can and rest/relax. I am going to try to fix my low breast milk supply by pumping more. Tomorrow, my work week starts with the kid job. I start the new job on Thursday. At this point, if I have to, I am leaving the job working with kids. Every week, I am starting to wonder what are they going to do to me this week.

I also don’t want anyone to misunderstand me here. I am so grateful for my two daughters on Earth. We had a son, who died 18 weeks into pregnancy. I don’t want to continue to try to have any more babies. It took years to get here. There are a lot of bills due to going out West for embryo donation. I want to sell the house and move to another place. Maybe get a bigger house? Lately, it hurts about his loss. My oldest daughter and I have been joking about how Buddy, the new dog is my Beagle son. It’s a sore spot, but I am closing the book on pregnancy and having more children. I have been doing this since I was 29 years old. I am 41 years old now. I have been pregnant 7 times and I only have two daughters on Earth. I am done!