Monthly Archives: October 2016

On Becoming

A few weeks ago, I missed an OB GYN appointment due to being locked of my car. I had waited months for that appointment. Since having Joy, 14 months ago today, I had symptoms. Yesterday, I had an appointment with a nurse practitioner. I was anxious just getting there. I am thinking this is menopause. She listen to me and asked me to log my symptoms for a few months because I may need a uterine biopsy. I am like most cancer survivors. I thought this is cancer. Of course, I didn’t ask those questions.

Joy, our baby daughter, had a follow up for her recent coughing spell. All my thoughts were there. I stopped to the house in between appointments. I see black helicopters in the sky so I knew they were looking for someone. Just another day in US 100 most violent cities, I thought. They were looking for two men. I thought to myself, thanks for the reminder of the address change. There was a bigger storm that happened and I didn’t know it. It had nothing to do with Joy’s appointment because she was cleared. They said babies can have reactive asthma, which babies can grow out of. It’s a question mark if Joy has asthma. One more time, they will send me to a specialist. She is good for now. I was told to stop using the nebulizer.

All weekend long, I had this sense of dread. It’s been a long road to rebuild my relationship with my husband. I fell asleep early Friday. I have a lot of stuff to be done. It seems like one week to another, I never catch up. I was feeling very productive Saturday. I was up at early time. The dog was walked. The kids were asleep. Yes, I was going to do it today. My cell phone died. Five hours of holding buttons and hoping it would just turn on. Nothing, but finger cramps. I had to get a new one because the repairs cost more than the phone. The old one had several technical difficulties.

Since I had cancer treatment, I can’t seem to get out of my own way. I have these plans to fix it and all intentions. Something happens and I don’t get there.

We went to the type of phone store. I had promised my old phone to my oldest daughter, when she starts middle school next year. The plan was to get a new one at the right time. Now wasn’t it. I was highly stressed because things weren’t getting done. The phone store was not interested in the least to help me because I was trying to buy an new older model. For an hour, I heard “your next.” Worst of all, I called my cell phone provider and they referred me to a store in the mall that no longer existed. I was angry at this point. Our day was ruined by a cell phone. So, I called the one down the street from my house. They had the model I wanted. Free at last! All fixed.

I see these parents being very harsh on their toddler son and I said something to them. It almost caused a fight at the mall. I had no cell phone so I had to run into a store to alert security. We took the kids last second to a Halloween event. We rushed off to drop something at my aunts. I had an answer.

I got to the store and they had a model that I thought about getting. Last second, I told them that I wanted that phone instead. Well, unknown to me the only left was the floor model at full price. Then, they couldn’t sell me that model because they couldn’t get it off demo. So, I brought another version of my now old cell phone. After months of telling my husband to get a new one, because he got a cheap one, he got one too. We get home at 7PM with the kids unfeed. Now, I am really judging myself. Bad mother! I was brunt out about the day. On top it, I had cupcakes to make for the daycare party. So, I had Hope make them and just baked them. After the first batch, she tells me, “I used canola oil.” What a day. Sunday was no better. No one at the party ate the cupcakes after all that work. All these intentions and nothing happened the way, I planned. My neighbor had all family over I thought nothing of it.

Yesterday, I was obsessing about the needle biopsy of my uterus. Dr. Google found a way to comfort me of non-cancerous reasons. Yesterday, I see my neighbor in her driveway. I am going on and on about the black helicopters and telling her she shouldn’t hang outside. She asks me, “how come I never responded to her text.” She told me her husband died Friday and she texted me Saturday. It ends up, he hide he had bowel cancer for 2 years. He died from an infection. There is no text on my phone. I am without words. All weekend, I was in a grump of a mood over a cell phone and avoiding them, when the people I cared about were grieving and I avoided them. I stood there in tears and shock. Why didn’t this man tell us? Who gives a damn about a cell phone? Two teen boys lost their father. I sat up late last night without words. At the end of the day, who cares about what type of cell phone is in your pocket, where you live or what car you drive. I have had an odd relationship with my neighbors for years. Damn in the second when I needed something, they surprised me at times. Last Christmas Eve, we had to have the fire department at the house due to carbon detector and the fire place. She texted me, “do you need me to take the kids?” I am here at my house remembering the early moments of when someone dies… I don’t have the words for her. I can’t stop crying. I am going to try again to reach those goals. The new phone is acting up. Let’s put life in perspective, these are just things… Our real compassion should be for one another. Maybe if we had compassion for one another, we wouldn’t need the black helicopters. Maybe there wouldn’t be a list of the 100 most violent cities to live in

Goodbye and Hello

Yesterday, was the sixth anniversary of the death of my mother.  She died in a year of many losses.  We had took her cat in after she moved into elderly housing.  I have many regrets about her death.  It includes the constant fighting with my siblings.  They never believed she had dementia.  Her last doctor’s appointment was in days of her death.  She was born in October and she thought it was January.  It was  time for her to start getting her treatment.  My husband and I were in the middle of preparing documentation, when she died from heart failure.  I found her because her cat started dying the same night.  I was in the middle of chemo and Hope was screaming.  I had to get the cat out of the house.  Literally, the cat was loosing consciousness.  He had been at the doctors that weekend, we couldn’t figure out why he was loosing weight.  I went to that house with the intention of telling my mom it was time.  I found her dead instead.  Two weeks earlier, I begged her to take the cat back because I felt the cat needed daily care that I couldn’t give him and she refused.  It was the worst day of my life.  When I arrived at the emergency clinic with him, I handed him to the vets.  I cried. “Is he dead?”  He was barely alive.  My husband didn’t want him put down and I couldn’t reach my mom.  My cell phone called her 63 times that night.  It was not unusual for her to be with the neighbors.  I told the vet to make him comfortable and not to resuscitate him.  I told the vet that I was going to find my mother.

The title of this blog is based on my conversation with the vet the day of the cat’s death.  It was another hard day of my life.  Hope, my daughter was 5 years old, she was expecting to hear the cat died.  I couldn’t breathe when I told her Nana died.  The cat held on.  We were told to come to the clinic so he could be put the asleep.  The vets were beside themselves.  Here I was an obvious cancer patient because I had no hair.  I wear a hat on my days off and I hated my wig.  The cat began to die the second we arrived at the vets on his own.  Both they deaths just 2 of the losses of the year.  Eleven months earlier, I buried my daughter Addison.  I was diagnosis with breast cancer.  That year, I held Hope and my husband close.  Months after breast cancer, I suffered from PTSD.  I remember telling the vet the following when I entered the room, “I am so sick of goodbyes!  It’s time for Hello!  I want to say hello!” My bereavement card from the vet said I hope you get those hellos soon.

Here is a list of good byes:

A relationship with my brother, sister nieces and nephew. ( I pray there will come a day that we can be a family with healthy relationships.)

5 different pregnancy losses

My mother

3 cats over 6 years

2 ferrets

My beloved dance school teacher

My hair (chemo),

My nails (chemo),

My fertility.

My husband’s fertility.

Sense of safety in the world.

Belief cancer happens only to other people.

Brian, a friend that committed suicide.

Rachel, who died from Campomelic Dysplasia last week.

Cars/Jobs/money (low priority on this list.)

 

Hello/Gratitude List (It took us 6 years to get here!  We are still rebuilding!)

Baby daughter Joy, who was born August 25th 2015 (We all knew that would be first.)

Being married to a hard working man for his family.

Another year of watching my oldest daughter Hope grow into a beautiful young lady.

Buddy Brian, the beagle dog who is smart, but a challenging.

Both hospital programs I work for.  In the past year, I work in a different program at the hospital as well as the program I always worked for.

My new job near Boston.

Finished the family room in the basement, which was originally started in 2003 before my daughter Avery died in 2004.  I am particularly proud of that.

A house with better quality air.

A home to come home to.

A car that works.

Food on the table.

My two cats.

My ferret, Princess

The Parenting After Loss Group

All 4 Meditation groups I belong to.

BEING ALIVE! Glad I am not trying to fight any chronic health issues like cancer and infertility.

Starting to feel secure in the world.

.

 

 

Healing In Our Journey & Sending Healing Wishes To Others.

It is with a sad heart that I learned some devastating news today.  After the deaths of my daughters Avery and Addison, I stop sharing all my social media accounts with the “face to face world.” My family is old fashion in parts.  It’s the old thinking that after the baby dies, you never discuss it again.  So, occasionally these people show up and put them on the restricted setting.

I remain in contact with the families and patients of #campomelicdysplasia.  I made a promise to my children that had died that I would become an advocate for #raredisease  and parents of #infantloss.  My heart broke into two today, when I learned one of co-leaders in a group had died.  I was in mist of putting up photos and I saw her picture all over the place.  I learned she died last night.  Last message was about developing a movie for rare disease day about the families and people living with the effects and the after effects of this cruel disease.  I kept trying to make a demo, but the sign I wanted to shoot is down to represent Avery and Addison.  Her family is suffering from a lot of lost.  Her brother died some time ago.  Her mother is in the process of breast cancer treatment.  I sobbed.  Rachel, our co-leader, touched so many lives.  Sadly, she is gone…  Her family’s storm is reminding me of my own.

It reminded me of my storm from six years ago.  I am still trying to rebuild.  It effected my marriage, a relationship with my in-laws and my sense of spirituality.  I joined a bereavement group about the loss of your mother.  I was suppose to go tonight.  Unfortunately, I am not sure if somehow, I got sick or is it motion sickness.  Shortly later, I got sick in front of the kids.   I think it was motion sickness.  I held down lunch and ice cream too shortly afterwards.   It’s also possible like all young women facing breast cancer and chemo treatment that I may be going through menopause.  Tomorrow is my appointment with my OB GYN to figure this out.

We also joined a parenting after loss group that is 30 to 45 miles away.  My husband has lost his hearing.  I was typing away on my cellphone.  I thought he was following the GPS, when I looked up and realized he is lost.  I am not blaming him for loosing his hearing.  It’s tough, because I am adjusting too.  Every weekend, we are arguing about something else lately.  I took myself off the Nicotine Gum.  Remember, I can’t tell him because if we argue, he will tell me to go smoke.   I took Benadryl at night to help me sleep.  I over slept a few times.  We actually have separate sleeping arrangements.  I am tried of that too.  I woke up and the tradition is for me to get the coffee.  Here we are arguing over who is going to get the coffee.  Finally, I said forget this.  I drink Green Tea instead.  Talk about major withdrawal headache and feeling sleepy. It’s these silly arguments.  I am calling my Aunt crying that my marriage is over.  Hope was at a birthday party after we went to the infant loss event.  I don’t know what do I want.  Do I give him access to me or keep him arms distant?  I look at those kids and I don’t know what to do.

I was pretty emotional at the playgroup event, which was a  meeting fund raiser activity.  I have been through so many losses am I disconnected for society as a whole?  I am starting to feel closer to people online than real people I know.  I got almost tearful talking about my son Haven.  I never got to hold him.  We have been discussing when your rainbow is the opposite gender as your lost.  Not that I want to sound ungrateful.  I have two beautiful girls.  There is a lost of my son. I also feel I am grieving the end with menopause.  We could never afford the tracking out to the West Coast again.  My husband’s family did give a check for the siding.  I have all these emotions.  The anger of why weren’t you there.  I look at those girls.  Listen, I don’t have the exact answer.  I decided to invite them for Thanksgiving.  I want to have them as close as we were.  This state of living like a divorce family isn’t harming the kids.  This agnostic is just going to have Hope it will work out.

I was so worried yesterday about my weekend job drying up that I turned the car around and never went to church.  Today, I called and I was asked to work the next two weeks.  I get so worried about things.

 

 

 

My Jaw Dropping Moment

When my daughter was 4 years old, our family went through our own personal crisis that lasted about two years.  It started with my daughter Addison’s death a week before Thanksgiving in 2009.  I was laid off my job and needed to return to a former employer.  Months following her death was filled with genetic testing, employment problems and car problems.  Then the cancer diagnosis came.  I tend to skip these minor points.  My mother’s dementia was worst and worst.  I was in constant arguments with my siblings.  The week I had enough and her doctor looked me in the eye with agreement, she died from natural causes.  I was ready to file with elderly services and it would have been a vicious argument with my siblings.  My brother would have tracked us down like deer hunter.  This is the reason, I ended contact with my siblings.  I didn’t trust them.  I do pray there comes a day we can all come home and whatever is ailing them (addiction/mental ill) ends.  I was in cancer treatment at the time chemo and working full time.  My daughter had just started kindergarten.  Her world fell apart.  The baby died and she learned about cancer quick.  Her ABC’s were different.  A was for Angel Addison.  B was for Breast Cancer.  C was for Chemo therapy.  I carried guilt for not being able to spare her from these events.  Hope my oldest will say, “Mom, I wish I was 4 again.  You know before Addison died.” Her preschool world became a world with death and cancer.

My mother died in the middle of cancer treatment.  I never got to burry her the way I felt she deserve.  I felt she deserved to be buried like a Princess.  I was tired and I wasn’t going to risk our safety.  The cancer meds kind of sucked out my energy.  Honestly, that’s think of this like a survival story.  I had all I could do to make it day to day.  My in-laws began to refuse to help me.  I was so scared my first chemo.  My oncologist explained he didn’t know how I was going to react and I could get sick any point of a treatment cycle.  I was put on maximum meds.  I had been infertile for years, I wouldn’t use an over counter pain pill.  Those meds, my body had the opposite effect.  I got sick at the end of the cycle.  This was that moment that shook my being.  It happened at 2AM, I covered myself and the bathroom floor.  I had no energy.  I screamed once for help and no one came.  I went to scream again and realized it would wake up my daughter.  Then I remembered the tooth fairy was suppose to come, but I forgot and fell asleep.  I sat there covered for a few minutes.  I picked myself up and gradually clean up.  Now to notify the tooth fairy so to speak.  Too late! I heard my daughter stirring as I was in her room.  Hope began to cry the tooth fairy didn’t come.  So, an amazing  miracle occurred that night.  No fan or anything was going.  A breeze came and the letter to the tooth fairy through across the room.  I may been dehydrated from being ill.  I was hugging Hope and comforting her at the time.  I remarked quick, “Did you see that letter fly?”  I whispered in her ear, “It was the tooth fairy.” Sure enough the money appeared right next to us.

A few friends at work tried to help.  My in-laws wouldn’t help out a lot.  I felt energy drained.  So, I didn’t speak up for myself.  I felt like I was in shock too.  In 11 months, so much happened.  When the treatment ended, I was left with flash backs and the anger of it all.  I wonder is there a God or a Heaven.  When Joy was born, I felt like I was begging on hands and knees for help for my own C-section.  It does bother me.  I thought my marriage was over.  I wouldn’t see my in-laws for years.  I told them off.  It scares me to death about my kids, what would happen if the cancer ever returned.  I watched my dance school teacher die and leave behind her 12 years old daughter.  The entire family stepped up.  I don’t have an entire family.  My eighty years old aunt would do anything for me.  She has fallen several times.  I missed my mom so bad when Joy was born.  Joy has acid reflux and she wants to be held and swaddled so often.  Sometimes I get overwhelmed.  I am trying to fix this house.  I have all these dreams and stuff that was waiting for the baby to come.

I am writing all this build up to this simple event. My oldest actually emailed my in-laws a few things. I monitor her account and recently saw the sent folder due to a mix up in emails.   They have been so wrapped up in my sister-in-law’s divorce that we have been forgotten for years.  My husband brought the sidling estimates to my in-laws.  Here is my jaw dropping moment.  My father-in-law says, “we want to help you with this. Time to even things out.”  My jaw is still open.  Will this happen, I don’t know.  I will say that I need to watch my mouth more.  The anger built and built into resentment.  When I go to speak, it tends to come out like a Banshee scream.  In the past year, I decided to just not dwell on it.  They are who they are and too much of my energy was be taken up by this.  I told my husband.  Look we can continue to talk about how unfair this is or do something about it.  So it was surprising yesterday that we didn’t ask for help and we are going to be getting it.

 

 

Not Sure Of The Exact Answer: Being Flexible

Having survived the death of my two daughters to a rare disease, multiple miscarriages, infertility, breast cancer and my mother’s death, every day life problems are not as big.  Friday, I celebrated with my friend who was facing a colon cancer diagnosis after breast cancer to hear the biopsy was normal.  The following day was crazy.  I suffer from what would have deemed in the golden days “woman’s problems” after giving birth to Joy.  My cycles are so thick and heavy that it is a constant stress to me embarrassing myself.  I feel like a an overgrown preschooler with a change of clothing in case.  Saturday was a mess.  Joy woke up early.  We ran out of several food items for her.  I had to ran out and get stuff quick.

October 1st is a big day.  October is breast cancer awareness month.  Dwarfism awareness month.  Pregnancy Loss/Infant Loss awareness month.  I spent a long time struggling to get my icon to work to post on social media.

My oldest is 11 years old.  It’s a struggle to teach her to organize.  I woke up to her telling me that she lost her wall adapter (again).  I gave her my charger.  We have been trying to decide if we belong in the town next door where my oldest was chosen by lottery to go to school instead of our city.  Next year there is no middle school afterschool program.  I am trying to figure out what is the best option for us.  The bills are very high from last year.  When Hope needed child care for the summer, it basically took my entire pay check to pay for infant daycare and her child care.  Then, August is their birthdays and we had to tap into our savings.  Somehow, we are going to figure this out.  It is temporary because Hope went back to school so we are not paying for camp or child care.  Summer was always a struggle for us.  When I had my commission job with kids, I lost money to child care for one child.  It’s a sad improvement, but my new job just paid for child care for both of them.

Anyways, we are trying to get more involved in the next town over to check out if that is really where we want to live.  Joy started library group over there.  One mom had her preteen with her.  I am seeing lots of other families with the same age gap between children.  However, I don’t see the children with both the same parents parenting the children.  I got to talk to a few people.  Then we had to rush home.  We got a second estimate on siding.  I learned the city was having a hazardous waste day.  They would not take my leftover fertility meds, but they took the needles and some motor oil from the lawn mower.  I quickly finished up on the fall/Halloween decorations and realized we are late.

Our family was going to the activities in Rhode Island for breast cancer awareness.  I wanted to see the opening ceremony.  We were so pressed for time when I looked for my charger, which I loaned Hope and she didn’t have it.  I blew up.  We got her an Ipad for Christmas and once again it’s an issue.  I get one weekend day with the girls.  We never made it to the opening ceremonies.  I am tried of the Ipad.  We are going to install time limits at this points and if she looses her adapter again, mine is not available.  She has also been power struggling with us about eating breakfast.  She didn’t eat breakfast and ended up with heart burn.  She was told to.  It was a long night.  Then, I get a heart breaking message the Reverend’s wife died from cancer.

We were suppose to go clothing shopping.  My oldest is so tall now.  Sometimes clothing for girls fit her.  Sometimes, she can wear a small woman’s clothing.  Her feet had extremely hard to get shoes.  One foot is smaller than the other.  Some brands will have the last child’s size and others won’t.  I brought Joy all 18 month old clothing for her birthday.  It’s too big.  Literally, no warning from shorts to pants season.

I am also considering we can’t move and I will have to go find another job around Hope’s schedule again.  I started studying for the license to work at the schools again.

I don’t know how it is all going to work out.  I work two programs at the hospital now.  I was asked to take extra hours.  I decided I would for a few weeks.  I hope I get paid for the day I didn’t get paid.  The holidays are coming.  I am just going to have hope that everything will work out.  Our dog is doing better.  The family daycare we looked at may not be the one for Joy.  I am still trying to make up work at home on my days off.  Today is a good day because no child died from rare disease in this family.  Today is a good day because no one was diagnosis with cancer in this family.  Today is a good day, no fertility treatment cycle.   Every day life goes on…