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.

Semitemental Value

Last night, my heart was cut into a million pieces.  I have come from a tough background.  Last night threw me over the edge.  My birth/marriage family has basically been emotional cold.  Since Joy’s birth, I have been trying to get to a state of acceptance, move on and rebuild.

The surgery went okay on Friday.  I don’t have too much information because the doctor came and I was out.  My husband was called so all I know is Polyps were found and removed.   I don’t know how many etc..  We had to leave at 5AM.  The girls fell asleep.  I woke up with a head cold.  So, I just went anyways.  I asked him to stay with me in case the hospital decided not to do the surgery.  I got a bunch of snappy answers.  My head clicked and I said forget this now.  Our former marriage therapist told me he may be some underlining issues that I need to understand.    I have not shared that back.  I am trying to accept and adjust.  He apologized and all.  I just brushed off.  Let the show go on, I will take care of myself!

I get to the waiting room.  It’s packed with people and their family.  I tried to bottle up my feelings of sadness.  When I had breast cancer, those feelings of isolation resurface.  My in-laws have my name, email address and number.  My well wishes went to his cell phone not mine this time.  Which brings me back to another matter.  I find in this electronic age, my own sister will dictate messages through my aunt.  I address this again.  Auntie, the woman is almost 50 years old, let her call me directly.  A few weeks ago, I called her directly because they was a shooting at a popular teen spot.  In the middle of the frenzy, we didn’t know if anyone was shot or killed.  I called to check on my nieces and nephew.  No one was killed thankfully during the incident just shots.

Maybe it was the combination of my first daughter’s birthday/death anniversary, the fact it was called a “D&C” and the fight I had, I cried hard in the waiting room.  I resented the procedure being called a D&C.  I had been through a combination of 3 D&E/D&C.   Emotions were raw.  I was in and out to the bathroom trying so hard to bottle it up.  It didn’t happen.  I squeezed out one last call to my daughter’s cell phone.  I learned the girls went home and fell asleep.  They pregnancy tested me.  I felt myself even through we are officially done daydreaming about conception.  Oh well, it didn’t happen.

Friday, no pain.  A string of messages perked me up.  It was odd to be home and child free.  Even the cold behaved, maybe I wasn’t really sick.  Saturday, the day was a mess.  My husband needs to manage Joy, our toddler.  I can’t pick her up right now.  Joy extends her arms.  I don’t know how much she does understand.  So, I tried to explain.  I sit down.  Joy go get a book. I will snuggle you and love you that way.  Joy is a persistent little person.  No, I want my mommy.

Saturday, raw anger was boiling.  I wanted to finish that movie about the angels of our rare disease for Rare Disease Day.  Hope practiced Twinkle Twinkle Little Star for weeks on her flute.  Her bedroom is a mess, because we are trying to paint it.  He is sick.  I am sick. Hope is not feeling well.  We went back and fourth trying to finish this movie.  I posted a rough draft up.  I was thanked by the one mother who submitted anything.  Hope made slime and covered the kitchen.  The cramps came and I found myself in a squat position with preteen upset with her failed slime project.  Thankfully, my purse is well stock.  I went to the basement room because I was ready to tear her apart.

Then, came this critique  about the movie from a friend about the music and text.  I was having serious cramps and my nose is burning.  So, I practice a type of coping skill, which is like putting the ball back in her court politely.  Okay, you have these ideas, so help me fix it.  I watched the wording.  Of course the answer was “I can’t do these things.”  She texted me with an apology.  For a month now, I have been trying to pull this off with little invested interest from the group.  Again, I watched how I said this, but this one hurt.  I have been there for years.  I sent her messages when she was pregnant with her baby who didn’t make it and during her subsequent pregnancy, which was a healthy girl.  I was heated.  I sent a message explaining these things.  I accepted her apology.  You know she was one of those messages after the surgery.  So, we are good today.  She is still my friend.  All fixed.  It was a very thin line because I wanted to loose my cool.  The answer is we are all living beings.  To use old 12 step wisdom, I was a proud member of Ala-Anon for many years.  I am grew up into a substance abuse counselor.  “It’s about progress, not perfection.” The more I live. The more I understand, you need to be flexible in life.  Perfection is something for TV show.   In the real world those perfect plans are not always realistic.

Next year, just one movie for Avery and Addison.  (Period the end.)  I am done with my co-dependent slip.  I am feeling better today.  I hope we finish painting Hope’s room.  Funny enough, she wanted this different color.  I braced for it, because the room was originally painted for Avery’s nursery.  It ended up, it’s the same color.  It was a string of communication errors.  One could say it was like the angel Avery just said no to Hope’s color choice.  My husband has hearing loss.  I am still trying to adjust.  He swears I told him to buy the paint last week.  What I really said was for Hope to think about it.  He just saw something circle and brought it.  Hope is saying it’s okay.  It may be a few years before the house is sold. Let’s end it with, it’s about progress not perfection!

 

 

OOPS! FOUND IT!

I have a hard time finding the rough drafts on my phone.  Here was the original post.

Around the anniversary of my first daughter’s birth/death, our family was verbally abused by the previous caregivers that I hired to care for my oldest Rainbow daughter Hope.  After that the month of February became the month of radio silence between me and all the medical providers.  I will  try for the month to avoid routine appointments.  If emergencies happen or something is a urgent matter, I seek medical attention.  So, I have been living with heavy bleeding to the point of needing to carry spare clothing in my car in case of accidents.  I bleed and usually get one week off between cycles.

This month the ultra sound showed evidence of polyps in my uterine lining.  It didn’t last year.  It has been 15 months of suffering.  One day an accident happen because I stood up at a restaurant.  All over the chair and  floor.  Really embarrassing.  I have had enough and I am getting surgery this month.  I am tired of the mad dashing to the bathroom, because I am afraid of accidents.  I am hoping this surgery corrects these problems.  There is very little they can do because I am a breast cancer surivior.

I am still cleaning up and fixing up the house.  I am struggling with the thought of I am selling the babies home.  I have been pregnant 7 times.  Only 2 came home.  I want to move.  The house is too small.  We could live better in the town next door.  I can’t stop about feeling sad about selling the house.  After Avery died, I proclaimed, I am never selling the house Avery was suppose to come home to.  Honestly, I have been also coming to terms with we still have the conception bill from Joy’s embryo donation to pay off.  We really neglected this house to pay for the fertility treatments/cancer bills. I could barely find the energy after the death of another daughter, cancer treatment and my mother’s death to clean it.  So, we continue to rebuild.  Another project, I find myself failing in love with my house more even through I know we could do better next door in the other town.  I am also divided about selling the house.

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.

 

 

February Is Rare Disease Month & Avery’s Birthday/Angelversy

My sweet first daughter Avery was born unexpectantly at 31 weeks due her rare disease in February.  I woke up Saturday, February 21st at 5AM to my water breaking.  Since we had been warned about the possibility of her preterm labor due to her birth defects, I had all my clothing always packed in the car (just in case.) I carried documents and medical records in that bag to explain her rare condition.  My sister had issues with preterm labor, so I knew what to do.  We only live about 2 blocks away from the local hospital.  Literally, we sprang into action.  When I was awake enough to understand I was not having an accident, we left the house.  We went to the local hospital first to try to stop the contractions.  I was given meds, loaded into an ambulance heading to the Boston hospital.    At first this was a regular transfer, the labor returned as the ambulance almost crossed the next town over.  That’s when the ambulance put it’s lights and sirens on.  It took a left on the main street.  We went on the highway we went.   When I on that highway and an ambulance drives by in a certain area, I burst into tears sometimes.  Avery was born by emergency C-section in Boston at 9:04AM on February 21st, 2004.  It was not your normal delivery.  There were no cries of a newborn in her delivery room.  My delivery nurse was  a saint.  She kept updating me on if Avery had a heart beat or not.  Then I saw the team wheeling her to the NICU.  They stopped for a brief second and let me kiss her head.  I remember trying to see my beautiful baby that I gave birth to.  There wasn’t time to study her face.  Off they went.

Almost 13 years later now, since she was born and died.  She made me a mom.  For 33 1/2 hours, she was with us.  Her eyes only open, when we spoke.  It broke my heart, when I asked them to stop CPR.  My husband and I collapse hands we held her in our arms until she died.  I had never witness a person die before.  Months after her death, I was haunted by her loss.  A mother with no baby to care for.  A broken heart and empty arms/uterus, my mind was haunted by the memories of that day.

For years, I would not drive to that side of town, where the labor returned and the ambulance put it’s lights on.  Hope, our rainbow daughter started daycare in the area.  It become a daily event.  Her birthday was the first time I remarked the city I move to as home.  Home prior to this event was the city I grew up in.  When the ambulance doors closed, I realized I am leaving home.

Rare Disease Day is on February 28th or February 29th if it is leap year.  Since learning of the first one after our second child Addison died of the same disease, every year my daughter Hope and I have Rare Disease Awareness Day projects.  This year, we are trying to do a project with other parents who lost their child to the same rare disease.  Sometimes, we go to a butterfly museum to mark her anniversaries.  Almost always, it feels like the butterflies follow us more.  This year, I join a parenting after loss play group.  The plan is we are going with them in early March to the butterfly museum.  This year, she would have been a teenager officially.

I renew my promise to God.  I asked him to help me fight breast cancer.  I promised him and my daughters that I would forever advocate for rare diseases.  My hope is before I die to hear that Avery and Addison’s life would be different if they were born in the future.  Avery was the only burnette of my children.  Both my living daughters were born with very blonde hair.  Both Hope and Joy have been referred as the Gerber babies.  Strange enough we were grieving the Gerber Baby, when I was pregnant with Avery.   This is a term parents, who have had children with birth defects use to describe their feelings.  This year, I was going to enter Joy’s picture into a contest, unfortunately due to computer problems, I couldn’t.  Every year, I remember what it is like to have a child with multiple birth defects.  Hear me Avery and Addison, your mother has not forgotten!