Monthly Archives: August 2015

Odd Meetings In The Cemetery: Our Angel Babies Pray For Peace

We had the strangest run in of all.  When Hope was due to be born, we went to our daughter’s grave the day of her birthday.  The hospital is not a 20 minutes drive anymore.  It’s an hour in another state.  So husband and I decided to visit the cemetery tonight after diner.  I picked some flowers from the yard.  The three of us kneeled and prayed together.  I saw a woman with her kids on bikes driving around the cemetery.  I thought nothing of it.  I finally said to Hope it was time to go.  Then, I noticed the woman was calling to my daughter and Hope.  It ends up it’s my sister-in-law with her 3 kids.  So I stay in the car, my legs are hurting at times since they are swelling.  Finally, I push myself up.  It’s been hard to get up lately due to swelling.    My daughter Hope tells me on the way home that her cousins learned I was pregnant for the first time tonight.  Tomorrow is the C-Section.  If anyways doubts how rare disease can pull a family apart, they should visit mine.  I have given up a lot of things to seek fertility treatment.  Tomorrow is the baby’s birthday.  Trust is hard with the in-laws.  They hide so many secrets.  That’s the reason, I struggle to believe them.

Meanwhile, my plan is to try to breast feed the baby.  One breast operates.  My plan is to use a pump and add formula.  It was hard enough to undergo cancer treatment at an young age.  Why make things harder?

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Counting Down The Last Days Until The C-Section#i

Not much work is getting done lately.  We went on a picnic lunch to Blue Hill.  When my daughter was a toddler before daycare, we went all the time to Blue Hills to feed the ducks.   My husband and I worked alternate shifts.   We saw my Aunt yesterday as well.  She made a huge blanket and a sweater for the baby.  We had a minor car accident.  I went to get my Aunt coffee and the guy behind me stepped off the break. He drove right into the back of my car.   It was a pick up truck and I drive a small car.  It sounded worst to us than it was.  All I know is the baby curled into a tight ball in my uterus. Both my daughter and I spent a lot of time getting little one to relax.   I took his information.

One of my friends on social media lost her infant daughter to a car accident.  It took her years to have another baby.  Strangely, my C-section was rescheduled to her daughter’s birthday.  My aunt repeatedly said, “I am so sorry my sister is not here to see this baby born.” My mother died half way into my cancer treatment about 5 years ago.  I think we have cleared everything up with the in-laws.  My husband and I finished the discussion yesterday.    Honestly, it didn’t matter to me either way.  My daughter wanted grandmother and my husband wanted his mother.  I respect that.  I am moving on because there is lots to do and it is my last weekend with my daughter before the baby comes.  My mother would have never treated me like that.  She was the strongest person I knew.  She stood up for us and she taught me how to be brave.  Sadly, she never lived to see my hair grow back from treatment or this baby.  If anything, I hope she understands I will forever love her.  We still don’t know if it is a girl or a boy.  We decided on double middle names.  So if it is a girl, the baby’s name will be Joy Mary (after my mother) -Julie (Julie is the name of my dance teacher who died from cancer.)  If it is a boy, we plan to name the baby, Will Kenneth- (After my husband) Brian (my co-worker who could never have kids.  He was support to me when I had cancer.)

The Dust Of The Weekend

I have been on “maternity leave” over the past few weeks.  Due some bad timing of events and significant changes, I needed to take work home.  There are no benefits so I am doing this on my own.  Sunday night, I had significant Braxton Hicks or the fake labor pain going on.  I kept hoping this was going to stop, it didn’t.  I got 2 or 3 hours of sleep.  I decided in the middle of the night to page the doctor, because the hospital is an hour away from home.  Some anti acids got me back to sleep.  Yesterday, I fell asleep every few hours.  What I need to do for my job is significant.  In the mist of all those fake contractions and wondering if I would have a C-section in the morning, I found a job for me to apply too.

Our family has been through more changes than a baby finally coming after 8 years of repeated infertility attempts.  My mother-in-law was diagnosis with this genetic disease called NF2.  She is loosing her hearing due to it.  This diagnosis occurred when my daughter Addison had died and a month before the breast cancer.  We had no idea. My life had become a living disaster of cancer treatment appointments and kindergarten school shopping.  My daughter’s innocent world was destroyed by the death of the baby and her mother’s breast cancer diagnosis.  She was learning an alternate alphabet than other 5 years olds.   One of the saddest moments happened as well that year was we learned how we had two babies with Campomelic Dysplasia.  We were called one of the first cases in the world.  We still had jobs, a kindergartener to raise and breast cancer to fight.  It didn’t register about the NF2.  It took years for us to recovery from learning our family was one of the first.  I still wanted a baby even through I just getting my hair back.

Over the past few years, I noticed my husband was struggling with hearing.  He would not do anything about it.  I was just being a rude person.  Then, he started missing information at work, so he scheduled a hearing test.  This is when I learned about NF2.  I had my own stuff going on.  We just got pregnant with embryo donation and I was getting over a threatened miscarriage.  He needed an MRI to see if he had this genetic disease his mother did, where the body would make non-cancerous tumors on the central nervous system.  The fact that they were looking at him awoke me to the fact this could impact my daughter.  My mother-in-law and I have drifted apart.  I think it’s because I seem to give her grandchildren to burry and her daughter had one miscarriage/ 3 kids.   She change and I changed.   She no longer called.  She would up and cancel.  I wasn’t in the loop.  All I was told was my sister-in-law wasn’t getting along with her wife.  My mother-in-law is about those 3 kids.  Over the weekend, she told my husband he never told her about going to the hospital for the baby.  It was the last sword into my coffin.  I had enough of this.  I cried.  I made calls and two friends volunteered to help.  So, I emailed her and I was called rude.  Well, this has been going back and fourth between us.  The family lives in two separate worlds.  In this past year, when she was the phone.  The phone is passed around between husband and my daughter.

I am trying to understand this NF2.  They can do nothing about my husband’s hearing loss.  I don’t know what this Campomelic Dysplasia and NF2 stuff means to my daughter’s future.  On Sunday, she was ready to tear me apart for being rude to grandma.  Yesterday, my daughter was  more talkative.  I resent the way my core family operates.  Last time I checked it was not me, who filed for a divorce.  My sister-in-law’s wife with the divorce lawyer is the conquering hero to my in-laws.  Please explain this to me.

My daughter told me a few things such as her three cousins are hard to deal with.  She told me Grandma has a vision for her as the oldest grandchild.  In this vision is my daughter will babysit her cousins.  Now, I grew up a product of sibling abuse.  When people hear the baby and my daughter are 10 years apart, they think of her as some type of automatic babysitter.  So, last night I was in mediation class.  I swore I would never let them make my daughter the head babysitter.

My husband is now saying his mother plans to be at the hospital to care for my daughter.  At this point, I will believe him because I am emotional tired.  For eight years, I dreamed of this moment.  His inability to make limits shouldn’t destroy my happiest moment of my life greeting that rainbow baby.  My brother attempted to destroy my daughter’s birth by telling the pediatrician that I was mentally ill for giving birth to my first child.  I am 41 years old and I know I deserve better treatment.  I will thank my friends and move on.  Hopefully, they show up.  This is this baby’s actual birthday, they aren’t ruining it.  My meditation teacher cautioned me from shutting them off.  They have always had full access to my daughter.  They can have access to this one too.  PLEASE STOP TREATING ME LIKE POND SCUM!  I get I am not their family, but I deserve to be treated like a human being with feelings.

Meanwhile, I feel for my daughter.  She is having a hard time to adjusting to everything.  Our house had to be rearranged.  There are boxes of her stuff waiting for the multiple purpose room to be completed in the basement.  We literally just made enough room for the nursery and made the house functional.  Yesterday, she spent most of the day looking for her assignment.  The new teachers write the kids/parents a letter.  She sits down to do hers with great enthusiasm.  She stuffed in a drawer and we spent hours looking for it.  We found it.  She went to the orthodontist yesterday.  Then, we went to the mall to get my oil changed.  Her father met us there.  I went to mediation class.  She couldn’t find her retainer.  I thought I lost it.  At 11 last night, I discovered she put in the baby’s car seat.  She is not use to being home and not use to having her stuff piled.  I am sure she is scared.  I did send an email to the new teacher letting her know a new baby is coming a week before school starts.

Venting: Damned If You Do! Damned If You Don’t

Two friends of mine volunteered to meet us at the hospital to watch our daughter Hope during the C-section.  Most people want their child watched from admission to discharge from the hospital.  The plan is my husband is going to rent a hotel near the hospital that way I can enjoy the new baby and my daughter at the same time.  We are talking about 3 hours max. So, I sent my mother-in-law an email.  I explained to her that have two volunteers.  I also explained to her if she didn’t want to go that she didn’t have to.  Last year, I needed someone to come with me to my mammogram.  She is frighten of driving and she told me that she didn’t like hospitals.  All of a sudden at 8AM yesterday my sister-in-law is texting my husband saying I sent this angry hurtful message to her mother.  We are talking about a family that never calls me or visits.  I wrapped up both my ankles with ace bandages and we could finally take my daughter to the zoo.  We promised we would go on her birthday, but it rained.  I never felt so much personal attack in all my life.  My daughter was asking me what I did to “hurt” her grandmother.  This is the problem.   She is telling me my biggest problem is “I never ask for help, then I expect everyone to read my mind.”

I knew where this came from.  The problem is I asked for help during the cancer and the death of my daughter.  Her response was no and no.   I told my daughter repeatedly this is an adult matter.  Her favorite zoo animal was asleep and hiding due to the heat.  Here it is my first weekend home.  Usually, I work one weekend day and they go to see grandmother.  I don’t know how to get peace in this family.  I was so emotional tired from the zoo trip, I fell asleep for several hours.  It’s been 8 years trying to get to the happy maternity ward stay.  I felt emotional torn up.  I came home and feel asleep.  I tried talking to my husband about it.  His response was it was a good weekend.  I was emotional shredded.  Then, I didn’t go to bed until 11PM.  At 1 something this morning, I woke up nausea and having cramps.  At 3AM, I decided to page the doctor.  I looked at the events for the meditation groups coming up.  I found this excellent job opportunity that I am going to apply for.  We agree my friend should come to the hospital to watch our daughter.  The plan was to have my daughter immediately meet the baby.  Sometimes, my in-laws will actually attempt to make plans for us and we are like small children and we are suppose to follow them.  These people are only showing up now because it is a success story.  So many times, I was left to mourn the lost of a second trimester miscarriage.  I am setting limits.  She just wants to tell her friends that she watched Hope. Well, try talking to us.  I am just hoping for peace at this point.  You only get born once on your actual birthday! It’s about rebuilding your life.

Fighting The Urge To Send An Angry Email

My in-laws have canceled on our family a bunch of times.  There is only a week and half left before the C-section.  I have asked my husband to confirm with them a bunch of times that they are watching my daughter for the C-section.   So I put my foot down and insisted yesterday.  (Trying hard not to swear) His parents are now stating we never told them about caring for our daughter.  Really strange, because I know we did.  I getting ready to go shopping because a friend is coming all the way down.  Ken’s talking to his parents.  It is an awkward situation so I leave.  Later, when I brought the groceries in and my friend is outside.  He drops the bomb on me that his mother is saying he never told her.  A lot of crying later….  two friends are volunteering.  I sent her this email politely saying don’t come.  For years now, they mistreated me awfully.  I have swallowed my tears and invited them to all my daughter’s events.  It’s time for me to stop making excuses.  It’s time for the world to see the damage that was done.  We live in separate worlds.  I don’t know if it is the tumor in her head or what.  I am trying to learn more about this NF2 disease.  Right now, what I do know is I need to take care of myself.  I am not trying to complain.  My ankles are so badly swelling, I can barely walk without flip flops.  My feet will not fit in shoes.  I can’t have stressful people around me right now.

Enjoyed Hope’s Birthday Party!

I had the best time at the party.  Many of Hope’s (my daughter’s) friends have mothers, who I enjoy speaking with.  Especially, two mothers who have only one child by choice.   Friendships are very different with only children.  My daughter has struggled with the deaths of her sisters due to rare disease.  For many years hearing others were to become the “Big Sibling,” made her cry.   Hope was my drive to continue in fertility treatment.

My husband’s parents canceled last week.  By the time of the party, I moved past it.  I am just now starting to learn about rare disease number 2.  This NF2 disorder.  I don’t know what is going on with this non-cancerous tumor in her head.  Monday, she again accidentally called the house.  She does not acknowledge Hope’s birthday the day before.

Anyways many of my friends are aware our family lives in separate worlds.  He goes to his family, I am not a part of it.  We are slowly preparing for the C-section.  Only one person may stay with you during the maternity ward stay.  My husband’s parents only agreed to watch Hope for the C-Section surgery only.   I don’t know if they will cancel.  If they do, I am my greatest support person.  He is going to have to go and watch Hope.   So, I asked my husband to get a hotel in the area of the hospital for him and my daughter to stay at.  My friends were upset that I would be alone.  At one point, I would fight hard.  At this point, I am about acceptance.  His family will come to the maternity ward and I will not be treated like family.  Many times, I grieve this lost.  Over the course of this pregnancy, I learned I have many good friends that are my family.  I survived my breast cancer through friendships.  I struggle and grieved the lost of my family.  My husband was upset because he thought his sister was not showing up because she was late.  She came, I am polite.  Our families live in  separate worlds with one connection my daughter.  I don’t know if they will accept the baby, since the baby was conceived by embryo donation.  It will hurt no family of my own will come to the maternity ward.  My plan is to go to the family room if it gets to be too much.  I can’t make his family feel a love for me that they do not have.  Tonight, my daughter begged to call her grandparents because it is her birthday.  I told her she needed to do that with her father, because they would not answer my cell phone number.  He called and the phone was passed back and forth between them.  I am exhausted from them.  My hope is someday, I will grow old enough to have my children marry and to have children of their own.  I will show their spouses love and their children that I didn’t have.  After the baby is born, I will continue to seek spiritual connection with others through meditation.

The home front is quiet.  As long as the topic is child care or house work, we have peace.  The second, I seek a spiritually connection, it’s a war.  He will not draw boundaries with them.  It’s more a friendship than marriage.  Tomorrow, I am canceling my mammogram.  I looked at the hospital website.  The baby will not be old enough for the child care at the hospital.  He has to come and watch the baby.  The effects of his mother having this NF2 genetically for our daughter has been over our heads the entire pregnancy.  The baby is fine thanks to embryo donation.  My daughter Hope, I have no idea what this disease means for her future.  It scares me that any point her body could make these non-cancerous tumors anywhere in her central nervous system as early as age 22.  I texted my husband (texting is a gift since we learned he lost his hearing) how about we try to speak to the geneticist after the mammogram.  So, I am going to try to get an appointment for both in one day.  I will Hope my daughter Hope is okay.

Rainbow Babies and Blessings!

Rainbow babies are so beautiful that one should never vent about other things in the same blog.  August is an interesting month of memories for me.  My first rainbow, Hope was born on August 11th by planned C-section.  My first daughter died from a rare disease and she was born premature.  It took 8 months to get pregnant with Hope and a fertility evaluation.  All these precautions were put into place to safe guard Hope’s arrival.  Just remembering how I counted the baby’s movements.  A few times the movements would be too slow and I would hold my breath and start over again.  So, we got to 37 weeks.  Okay, baby come when you want.  At 38 weeks, the doctor scheduled a C-section because I was SHOWING LITTLE SIGNS OF PROGRESSION.  All these weeks of concern and I was going and going late.  My grandfather’s birthday was open for a C-section.  I picked it.  Would you not know that as the machine was being shut off, it detected a contraction? I didn’t even feel it!  When I was in infertility treatment, uterine ultra sounds they can see the C-section scars.  Although, my first daughter died a day later.  I treasure this marks.  About 5 years ago, I started chemo in August.  The doctors wanted to start chemo the same week as my daughter’s 5th birthday and I declined.  I started chemo sometime in the last two weeks of August.  My mammogram is due every August.  Today, I got a reminder notice.  I had numerous IUI’s, 5 IVF’s, 5 pregnancy losses and two donor embryo transfers.  Finally after 8 years, this baby is due late August.  The day of my discharge from a hospital in Rhode Island, I should have my mammogram in Boston.  I plan to call and reschedule, but what a beautiful ironic thought of it all!  So next year, I have two Rainbow birthdays!  Birthday parties aren’t quite working out well for our family.  Hope is starting to age out.  I think next year, it will be a private family event.  This weekend, we celebrate our first rainbow turning double digits!  My daughter requested both of us take her actual birthday off and celebrate. Yesterday was my last day at the kid job, but I brought home tons of paperwork.  I tired to stay up all hours of the night to finish.  I finally surrendered to the fact that I needed to bring it home and finish it on my own time, which I am not happy about.  Tomorrow is my last day at the hospital.  Today was Hope’s last day of camp.  My plan is to spend time with our first rainbow and finish the nursery.  There is about two and half weeks left before the next Rainbow’s scheduled C-section.   My heart is so blessed to have two August rainbows to brighten my skies in this life.

In 500 Words Or Less! Anything More Would Be Way Too Much!

It’s been a real struggle with the in-laws for them to follow through with our family.  This week another co-worker bluntly asked a common question.  Will your in-laws take your daughter, when the baby is born.  Sometimes, I feel a need for some strange reason to cover for them.  I said nicely and politically correctly that my sister-in-law is going through a nasty divorce and she needs them to care for those 3 kids.  So a birthday card and a check show up at the house.  Two weeks ago, I invited her every so nicely.  I guess she didn’t like the idea of a pool party.  I had to ask my husband to follow up with her, because I knew what it meant.  So, a few days later, I learned she was not going.  I miss my mom so much.  Both my in-laws made empty promises to me on the day of my marriage.  My feelings were hurt.  All my life, I was the “forgotten child.” She doesn’t need anything.  When it’s not you, but the child that you love…  Those are fighting words.  At the first birthday party, I made my daughter’s birthday a big deal.  My entire family did not come.  One August about 5 years ago, I had cancer treatment.  The doctors wanted to start chemo the same week as my daughter’s 5th birthday.  I refused.  A lot of parents would not come.  I had 3 surgeries and asked for help with the party set up.  My in-laws said they would come.  They didn’t come until the party time. My husband had to get my mother.  I struggled with my left arm to lift and carry things by myself.  Actually, the drain, I think was taken out a little too early.  The fluid was building under the arm.  I was setting up for my daughter’s party and no surgeries were going to be in the way!  At the end to my surprise… my friends took the party down for me without asking.  So Sunday is Hope’s tenth birthday, as angry as I was.  In other ways, I am relieved.  It concerns me, because she is suppose to watch Hope during my C-section so he can witness his baby’s birth.  If they don’t show… I could do this on my own.  Trust me, I am strong.  I will never speak to them again as long as I live.  The plan is for my husband and daughter to stay at a local hotel, because you can’t have two people in the room.  My daughter is not old enough to be by herself.  429!  The end!

Tossed And Turned Last Night

Finally, it’s August!  At this point it does not matter to me if my due date is August 31st or September 1st.  Yesterday, I had swollen ankles and feet, when I came home from work.  Recently, we had been pulling baby stuff from the basement and my shoes needed to be washed.  My old shoes were very tight which may have caused the swelling.

I had to work yesterday.  The nursery is not perfect.  The computers are gone.  This week, I have an appointment to have the car seat installed.  It’s the last week before I go on leave from both jobs.  My maternity leave is not paid.  Remember several years ago, I decided to give up my hourly waged job with benefits to go to a commission style job where I make my own schedule.  It does not pay for paperwork.  Hope was pretty sick last week and I missed some hours.  We never heard about the Chicken Pox blood test.  She got a doctor’s note for today.  She was so happy about going back to camp.  The director was nice about it.   My anxiety is high because there is no pay check on my end until early December.  I decided to take a job saving the world, so we have been here before.  It worked out when we had our daughter Hope.  Next weekend is her 10th birthday party.  She is all better now.  This weekend, she really help out as we switched the house around.  It’s hard because time is so limited.  I have usually one week day to get furniture moved.

Yesterday, I didn’t feel well due to the swelling in my feet.  It was a generalized feeling of I am not feeling well.  My head last night raced with everything needing to be done at work, home and Hope’s birthday party next week.  I woke up several times.  We did pack clothing for the baby last night.  I am using the same carry on suit case as I did going out to the West Coast to get pregnant through embryo donation last December.  My head was just negative and overwhelmed with everything.  It’s hard because I know the in-laws will be there for Hope’s birthday and the birth of the baby.  Is my husband’s father going to come in and start arguing with everyone.  Are they going to make me feel like I don’t belong in my own maternity ward bed?  My husband has my daughter need to stay at an hotel locally during my hospital stay.  I think it’s best for my daughter and husband that way I can get up and take care of the baby.  Last night, I got up and packed two funny uplifting books in my bag.  My in-laws have a way of overwhelming me.   If I did try to talk to my husband about it would be harder.  He will just argue with me.  I am also anxious about learning to breast feed with one breast.   My left breast will not function at all since I lost the nipple during cancer treatment.  I saw a family room on the floor, which the baby can not go to.    My plan is if I get overwhelmed to leave and go read in the family room.  Today is not my usual Monday.  I have to make up work so I can go on leave this week!