Tag Archives: Raredisease

Your Pink Elephant Is Real!

I sat through two appointments today about what to do with my youngest, who is 2 year old and having attentional/sensory issues.  This week has been a whirl wind.  I am trying to catch up after having a bad case of the stomach flu.  My oldest had an appointment too, due to her anxiety over middle school.  She is going to be going to counseling for  a bit.

It’s like this. Last fall, we paid a $1000 for the front end of my car to be rebuilt after a tire popped on the highway.  Thankfully, we walked away. I started hearing more noises lately.  It’s an inspection sticker month.  I asked them to look for the source of these noises.   I am hoping they just say your crazy lady.  I returned to get more $1000 estimates on more work to be done.

I was hoping the day of my 2 1/2 year old evaluation I was hoping to hear I was crazy too!  My gut is often correct.  The worry is setting in.  She is two and half and she needs services for attentional/sensory issues.  What is her future going to be like?  What will kindergarten be like?  I feel the guilt, the worry and the blame.

Remember something, my first daughter died from Campomelic Dysplasia.  I was a Rare Mom first.  I learned rather quickly how to advocate for Avery in the 14 weeks we knew.  It happened again.  I advocated for Addison.  Shortly later the breast cancer came.  We are not talking a rare disease or cancer.  Weather it’s migraines or sensory/attention issues, this rare mom is up for the challenge, because Avery Bravery taught me so.  Even through these are more common problems, my brain is on it!

Next week will be a little emotional for me.  It’s my birthday.  I am not grieving getting old.  I grieving my losses.  My father was extremely verbally abusive.  I knew that I was not wanted at an early age.  My mother gave me all she had.  It was my saving grace.  There is still a piece of me that makes me feel like a loser.  It is at this time a year, I miss my mom and my angel children the most.  I see what others have.  The negative thinking is having a field day in my mind. The empty parts of me light up with intensity.   My sadness has lessen compared to other years, when I would wake up in tears around my birthday.  Some days the emptiness of his words punch through.  I have plans to quietly celebrate my day.  This weekend with friends.  Next week, I will celebrate with the girls on the actual day.

Lately, my career path options has been popping up.  My resolution was to bring our family to a healthier path.  I signed papers for the school system to look at my youngest daughter.  She only has about 5 months with Early Intervention.  More time pressures on my schedule at work are possible.  This week was filled with antagonistic comments. I couldn’t fight them.  I feel like I work harder than I need too.  There are other options to make my life easier.  I don’t claim to have the perfect balance.  After Campomelic Dysplasia and Cancer, I don’t have the same priorities. Surely, there must be more options.  Life can’t be this hard.

There is a housing shortage.  All this hard work to get out of this city.  The houses without needing work are too expensive.  The thought of moving out of this house into another fixer upper depresses me.  We put so much into this house.  It may not be this year the big move.  I am hoping.  The last big project is the bathroom being redone.  No house is without work to be done.  Hopefully, we find that dream house and move on.  The other town is top preference.  I was told if my daughter could walk to a bus stop, they would consider transporting her.  Not so much is up in the air as compared to other times in my life.  I am going to hope.  I may take a plunge into a new career move.

PS-The doctor thinks Joy may have some milk protein allergy going on.   She is doing way better on milk free milk like Almond milk.  The eczema cleared up on her skin Her acid reflux meds are fine.  She recently had regular milk by accident.  Her behavior was uncontrollable and she had diarrhea.

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#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.

 

Everything I Learned About Life: Rare Disease Day

I wanted to honor today as Rare Disease Day.  I do not proclaim to be perfect but learning.  My husband cut his thumb, while painting our daughter’s bedroom.  In that moment everything was happening according to plan.  Then disaster struck.  My perfect day with my oldest daughter got twisted.  He could not continue to work.  He needed 5 stitches.  Yesterday, I did not feel well.  I tried to fix this.  The room was suppose to be done on her last day of school vacation.  We set up a temporary sleeping situation.  My oldest struggle to sleep or get her clothing.  I did what I could.

I thought over the film project.  I stayed late at work, while a co-worker helped.  At midnight last night, I started to paint.  The ceiling roller broke in half.  Paint spilled on the floor.  At 4AM it was done.   Our family is the first document case known of passing this awful disease, which took 2 of our children’s lives.  I miscarried multiple times, who know how many were really effected.  I am not going to tell you that we didn’t feel angry or shut down.  Somehow, we had to make a choice.  It was hope or despair.  Life is not perfect.  This morning I was so over tired and sick that Joy missed her first gymnastics class.  This has been a journey of learning to “roll with the punches” and learning when to punch back.  Hopefully, I am developing wisdom on choices of the 2.

My hope is someday to hear someone say, “Ms. C., if Avery and Addison were born today, their lives would be different.  They may have been alive.  Families now can get genetic counseling and mental health services to deal with the genetic information.  Families now don’t have to wait for a loss.  They can seek services before conception and make choices.”

Genes are not all we are made of.  Everyone deserves medical care!  Today, I am make through the day, because we are relatively healthy, except for the cold.  This a lot to be thankful for.

Disappointed, Stress, Overwhelmed & Grateful

On the second, anniversary of my first daughter birthday/death, I was holding my new born rainbow as a storm of betrayal was brewing.  Maria, a dear neighborhood friend died after a long illness with cancer.  I had hired what I thought was a good bunch of people to care for my daughter Hope.  My brother hid his son’s autism and I did not know that his anger was directed at some of the people I hired to care for my daughter.  Tomorrow is a horrible anniversary of one of those care givers breaking down and physical intimidating  both my daughter and I.  I had no idea of the demon I had hired.  I was exhausted from learning about Maria’s death.  He told me what he thought of me and my family.  He made me feel threatened for my daughter’s safety and mine.  Somehow, we made it out.  I reached out to others afterwards.  Finally, I decided to fire all the caregivers.  I learned an important lesson that day.  When your gut tells you something is wrong, listening to it.  Instead, I was so caught up in everyone else liking this person that I missed my soul was telling me that this person was evil.

For months later, my mind was taunted by the incident.  I couldn’t sleep or eat.  It was the hardest lesson, I ever learned.  After that incident, I avoid routine appointments during the month of February unless it is urgent matter.  It’s going on 13 years this year, Avery, my first daughter, was born with a rare disease and died a day after birth.  Some years are emotional charged. Others I make it through.  We used to get together with my in-laws and go out to eat to acknowledge Avery’s birth/death.  We haven’t done that in years.  I find comfort in participating in Rare Disease Month, which is February.  I find comfort in doing something special with our family.  Sometimes, we go to a museum.  Sometimes, we go to a restaurant for a night out.

I am having surgery again.   The last ultra sound showed uterine polyps.  I am trying to fix the house, we are in the third phase of remodeling.  (I am sorry to tell you there is most likely going to be a forth, fifth phase then more.)  Things unexpected are going wrong.  We owe taxes.  I can’t meet my own deadlines.  I promise myself not to stay up all night.  Last week was a series of disasters.  Joy, our toddler had a high fever.  Hope, the oldest found a lump in her hand.  It was a cyst.  It was a long night at the doctor’s.  The cyst went away.  We had snow days.  The original blog for this was saved as a draft, but I couldn’t find it. So, I am starting over again

I brought a tablet to catch up on work.  It doesn’t support my work program.  I ran late trying to get the tablet to work.  I was suppose to go to a mediation class.  After an hour’s drive, I was late and the door was locked.  I was in the cold.  So, I went Valentine’s Day and drove back home.  I never got to paint another room.  The refrigerator needed to be cleaned out months ago and it smelled like it.  Then Hope, my preteen daughter got sick.  Another snow day.  I couldn’t cancel with the OB GYN.  My husband had to come home again.  We got up late today.  I couldn’t get the kids out on time.  I got a bunch of angry looks from the receptionist for bring my oldest daughter sick to the pre-op appointment.   They made her wear a mask.  I was spoken to for her not having it on right in front of the waiting room.  We were a half an hour late.  I just get so overwhelmed.  All the rooms in the house need to be repainted.

My husband and I have decided not to sell the house this year.  We still owe a lot of money for Joy’s conception through embryo donation on the West Coast.  It makes sense to lower the bills and try to move.

Yesterday was the ultimate disappointment.  I was looking forward to ending the heavy 21 day cycles.  Sometimes, I am running to the bathroom to avoid an accident.  The surgery was the key so I thought. My doctor tells me the surgery will lighten it for a while.  My uterus is inflamed, which happens sometimes after birth.  The heavy cycles will continue.  I was so depressed.  I don’t run.  I live my life around cycles still even after infertility.

Today, I am just so overwhelmed between the surgery and the house.  I called out tonight.  Surviving what I have has taught me, I am having a difficult time right now. Let’s give thanks.  No one in the family is in active cancer treatment.  My children are in relatively good health other than the stomach bug or cold.  The house drives me nuts, but there is a roof over my head with walls to paint and rooms to declutter.  I am hoping this surgery works.  I am a behind in my schedule with the house.  I am going out this weekend for myself. We are going out to eat next week and going to a local museum.  Then, I have to work on the #rare disease movie with the other mothers about loosing a child with Campomelic Dysplasia. Now that the cyst is gone.  Hope can play her flute again, so I can record the song for the movie.

 

 

Summer is Over (Unofficially)

I dropped my daughter Hope off this morning for her first day of sixth grade.  She went back with braces.  Immediately, she was greeted by friends.  I held my breath, when they noticed the braces.  I breath again when one of them said, “Cool!”  Hope is no longer in pain all the time.  It was really hard on me to see this for awhile.  Last year the former 6th graders freaked out the 5th graders by telling them that they will eat worms on the week long overnight trip to a camp to learn about science.  They did an awesome job freaking them out.  I meant to get gummy worms for her last day of 5th grade.  I was too busy with the house.  I had a package to give her.  Unknown to me, they put the spacers in and  the gummy worms are a no no with braces.  I thought about it and thought about it.  This morning, I gave her the gummy worms with a big hug.  Welcome to 6th grade.  Before she said, ” Mom I can’t have this.”  I told her I was going to cut them up and see if I could melt them down in the mini crock pot as a science experiment.  Maybe we can make drinks for you.  She smile and giggled.

It was a long summer of fighting the mold in the house.  I have been able to get the lingering odor by the cellar door to decrease.  Somedays, it’s gone.  The truth test will be after the winter.  It was crazy of me to stay up all hours of the night to clean, I was worried about the family’s health.  The house is not in sell-able shape.  The outdoors need vinyl siding.  I need to paint indoors to a more neutral color.  What is going to really hurt is painting over the murals on Joy’s bedroom wall.  Hope’s handprints made the rainbow.  My husband and I used our hands to make the sun.  Hope at times says to me, “I don’t want to move.” I have people I talk to.  This house was 17 years of our lives.  The other night, another reminder of why we need to move.  I heard a helicopter over head and saw two police cars with lights.  I said to Buddy, our dog.  “Sorry, I don’t think we are safe outside.” I do love aspects of our city.  I can’t stand looking over my shoulder and trying to figure out if that is a state police helicopter over head.  With the mass shootings, I am aware moving the kids doesn’t mean it will never happen somewhere else.  Just last year as school was getting out, two residents of my city were firing at each other in the gas station around the school in that beautiful town Hope was chosen for.

Joy’s birthday at the bowling alley was an irony in itself.  I texted people, who said they were going.  Here is what made me so angry.  Eight no shows.   Two additional people late canceled the night before.  I was right 10 to 15 people.  My cousin who needs services decided to leave shortly after being there.  I was trying to reach out to him.  My husband was so angry.  On Joy’s birthday, I woke up at 5 AM with anger.  I am the type of person, who follows through.  One was the daycare owner and her family.  I kind of sent an are you okay message.  I was told she “forgot.” Funny, the other day, you said you were going.  My husband’s god daughter and her child, no showed.  My friend at work who I paid for the floor, no showed.  All these people were texted a few days prior.  Listen, I didn’t approach the subject with all of them.  Someone started a conversation with me and I told the person, I didn’t even notice you didn’t brother to come.  I am starting to hold people personally accountable a lot more for their actions or no actions with me.  It was embarrassing to pay the bowling alley so much money and then ask them to pay us back.   They knew and I swear whatever the excuse, it was embarrassing to hear my husband.  The bowling alley refund us no questions.  I have had insomnia all summer long due to screwing up my own sleep schedule.

Here is the irony.  One of my friends is facing another cancer diagnosis.  She was  there.  A friend who had turned his life around and was there.  He brought the kids a video game card.  A friend we made through Hope’s activities touched me.  Two $25 checks, one in my honor to the cancer organization.  The other check was written in honor of my children who died from rare disease.  I cried when I saw their names not in my hand writing, because there is no greater honor for a bereave mother to have someone else acknowledge the life of their child.

We also have an old oatmeal can where we collect change.  The change is turned into money and donated in memory of our children.  We call it the Angel Fund.

I finally reached out to my OB about the insomnia.  I started decreasing my caffeine intake.  It worked beautifully except the fire alarm went off at 3AM the day after Joy’s birthday.  Our dog has been suffering with some type of GI problems all month.  He really got sick at 5AM on Saturday.  We sent him to the vet’s and he is on meds and special food.  W expect a full recovery.  It was caused by my husband switching his diet quickly.    Sunday, I got 8 1/2 hours.  Then I went back to 7 hours on Monday.  Last night I was up for two hours in the middle of the night.  I suspect I have  the warning signs menopause due to the chemo.

Joy keeps looking like today I am going to walk, but she hasn’t yet.  She had a good physical.  We talked about weaning her from formula and the bottles.  Doctor agrees with me about her not needing toddler formula at all.  They did blood work today.  I didn’t want to do it yesterday with her sister there.  She barely cried.

My husband and I are going to start getting involved more now.  We have lost 3 friendships per year since our first daughter died.  Time to move one and trying to bring old ones back to life.

I need to also go back to Co-Dependents Anonymous to get support.  I keep putting it off.

Follow Up On Last Post

Last year, I took a seminar on Speaking Your Truth. I reflected on my sadness about the year the baby died, the breast cancer came and my mother died. After that year the following year, I had these negative thoughts that would just appear out of no where that something bad had happened to my only living daughter. It was so really. I became obsessed with is there an afterlife for a while. There the anger came back. The anger is lessen. However, when we were going on those trips to the West Coast and in fertility treatment, I stopped telling people all together. The failed cycles and miscarriages were my bitter secret tears. I silently cried. We say this now, those concerns were weeks of my life. When I took that seminar, I realized often I have been not saying my needs. I get m Instead of holding secrets, I expressed them. My husband and I have been on quite a journey filled with medical tests and waiting for test results. We learned who the carrier was. This year is the year of the mold in the house could be seen as irony for our pain literally our own brand of the black plague. I stopped cleaning and closed the house for years. I was very depressed after cancer treatment. I have spent every minute trying to fix this. I been telling people we feel alone. Then, I sent out the request. Only one person is going? Really? I have been there for so many. I almost canceled the whole thing. Then, Hope gets a migraine last night and my anxiety hit the ceiling. When you loose two children, it’s always in your mind it can happen again. We are the first documented case in the world. Sometimes, it’s hard to connect with others. I became the best small talk expert in the world of blowing people off. Anxiety was really high last night. I told him some things and he told me some things. I think it’s going to be a long process of healing for us. We’re not giving up. I have been going to these meditation groups and reaching out, but only allowing others to get not in arms length. When Hope as a baby had horrible caregivers, our trust of others went down hill. I am looking at the rejections today and I said to my husband, let’s reach out to make friends again as a married couple. There is this group, I like that is about family and self improvement. I spoke to my husband and we are going to try it. I need to go back to a support group. Basically, yes we were lucky to have a baby twice. I think deep down we are looking for a home. More than a house, a spiritual home of friends with acceptance. Being the first documented case has quite a large amount of luggage with it. I don’t sit on a pity pot about the first documented case. I say we better step up to the plate. There may be a second and third documented soon. I think people have moved on and we as a family need to move on too.

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.

 

 

The Importance Of Rare Disease Month

Many years ago, a woman said to me that she was surprised I remain focused on rare disease after years have passed since our children died.  When Addison had just died and I was diagnosis with breast cancer at age 36 years old, I made a promise to both children.  Every day, I hope someday for more cures and less bereaved parents.  I hope for more miracles.  I want to hear that if Avery and Addison had been born in the future that they could have done something.  I remain committed to anything to advocate for rare disease.

This month is befitting. Last year, I learned the family had NF2 as well.  It’s a disease where my husband’s mother lost her hearing.  Next week, Hope is finally after 3 months of waiting going to see a geneticist.  I hope everything is fine.  Joy was conceived with embryo donation so she is fine.  It has caused sadness and anger.  I hope we can continue on a functional level as a family.  I was highly criticized by some for deciding to take Hope to the geneticist.  I am not trying to divide the family.  I am strictly trying to keep Hope healthy.  If I am being overly protective, then I will be glad to hear she is okay.  Sitting and waiting doesn’t help me.  It’s like waiting for the shoe to drop.  Monday, I told my husband thank you for coming to the GI specialist appointment.  I am not trying to divide us.  We are trying to find some functional peace for our family.  It’s been a tough day already since both kids were ill and I have already needed to take time off.  It’s one more day, I had to take off.  I hope to hear that everything is fine.