Monthly Archives: August 2016

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.


It’s 5AM and Venting

I had my vacation in April, when I took a week off and cleaned the cellar.  I had started a new job too.  The last week of August is traditional our vacation.  I am overwhelmed a lot.  Mold was discovered in our house.  For weeks we went crazy to clean it.  At this point, I am doing what the agency who tested our floors for other issues said let the air conditions and dehumidifiers do their jobs.  I spent so many nights cleaning and trying to fix this.  I had insomnia all summer due trying to work around the baby’s schedule.

Hope (My 11 year old now) had an awesome birthday.  We canceled Joy’s (baby’s)  birthday at the house, people weren’t going to go.  I gave it some thought and decided to move the party to the local bowling alley.  Both kids have so much stuff for this little house.  So I decided to have a fund raiser component to her party as gratitude for surviving some tough hardships in life.  This of course is frown on, because part of the combined donation is going to Rare Disease.  A lot of people went to just sweep it under the rug our family should have more children.  I think about 14 or 15 people will come.  We switched it to a bowling alley during the week on the eve of her birthday.  I made this movie for the girls to tell them how special they are.  It took days of work.  It took way longer than expected.  Hope left out chicken bones and the dog got them.  Last week, I had to deal with the dog being sick.  Thankfully, the vet advised me on the phone.  He was not so sick enough that he needed to go.

This week, I had knee pain.  I was at a wholesale club buying water and my knee made a popping noise.  Later in the night, I began to limp.  It got better at times.  Mid week, it swelled up for no apparent reason.  I have been trying to enjoy the two week days off with Hope.  So, unfortunately, Hope needs braces.  She doesn’t have enough room for one tooth.  It brothers her.  We made the appointments.  First, we are greeted by the billing manager.  I handed her the credit card information.  I told her the contract was misplaced.  She snaps at me, “no signature no service.”

I look her in the eye and say, ” Do you know how to reprint it?” Joy was trying to escape as I am signing this woman goes to hold Joy and makes a mistake people do with young children.  For me, it’s like nails on a chalk board. She picks her up by pulling her up by the arms.  I am ready to have a stroke.    This week’s appointment, I thought they were only doing measurements.  I had no idea that they were starting to put parts in .  I told her that during the overnight this weekend at this expensive water resort hotel she could have all those foods she can not have.    They went crazy food shopping.  Hope is screaming because she was in pain due to the spacers being put in.  Spacers?  You told me she needed measurements.  The doctor wanted her to have a pain killer before the braces went in.  I gave her NOTHING, because why would you give Advil, when they are doing measurements.   I got told  she can’t have all that food we just brought because parts went in.

I am in the parking lot at lunch on Monday hugging Hope and saying sorry a billion times. Our plan was to go to lunch and back to school shopping.  Technically, Hope would be in middle school in her own city’s school system.  In the town next door, the sixth graders are the last grade in elementary school.  They will go class to class like a middle school does.  They get recess twice a week, which is not common for middle school.  Hope is puberty age, which has it’s brand of challenges.  She is telling me at lunch she wants Nikies like the other kids.

Since Joy’s birth, I have struggled with heavy cycles.  There is nothing they can do to hormonally regulate me, because I am a breast cancer survivor.  My options are ibuprofen or this medication.  Things were better, so I didn’t take the medication.  I got up from lunch and realized it is all over my clothing.  Thankfully, I started packing spare clothing in my car because I had problems earlier in the year.  I got changed.  I said, let’s go get some ibuprofen. Joy is not a lightweight by no means.  I struggle to carry her sometimes due to the tissue damage  caused by the breast cancer treatment on that arm.  Of course, I buy pills.  Hope is so big.  I read it and it wasn’t for children under 12.  Hope says, I am okay it doesn’t hurt that much.  Off school shopping we went.  She can’t wear Nikies because she has a wide foot.  So I told her to tell the kids at school, “that God decided he made you more special than Nikies.”

The next day, I had to finish with the nutrition study in RI.  Hope asked to go to the zoo.  She loves the Red Panda.  We got library passes.  I didn’t get them the day before, because I wanted to go home.  We get to the library and opens later.  I went to call them and cancel.  They let us in to get them.  We got there late.  The Red Panda wasn’t there.  We finished with the study.   Hope has been having IPad problems, because she cracked her screen.  I am calling around about the repair.  Some of the places were charging half the cost of the device.  We had more school shopping, we got another estimate.  I told her it was half the cost of the device and maybe she should ask for another one for Christmas.  She got really upset and started acting up.  I told her that I hope things are better for her generation.  This is when that child broke my heart, “I am not growing up into the horribly depressed person that you are.”  I told her to not look at me and to keep walking.  I was enraged.  Where did she come up with this idea.

On the way home after yelling at each other, she tells me her spacer came out.  I had to call the dentist.  They were asking us to come in during my work week. They are asking if I have a friend or family member, who could bring her in.  Of course this opens the wound of my heart.   She had been complaining all day about the spacers.  So I ask her point blank, “did you pull it out?” She bursts into tears.  I said, “just don’t tell them that.  Someone is going to most likely need to stay late over this.”

I love Joy.  My knee is hurting and I have a hard time carrying her sometimes due to the tissue damage.  I just wanted to go home.  The spacer went back in only 5 mins.  I sent her to the gym with her father.  Too much for me.  All winter long looking forward to spending time with Hope.  None of the few weeks I have with her have gone as planned.  Now, I am like those lucky people who had babies so easily and wishing school to start.  Her pain did stop. Wednesday was tough, because Hope did not feel well and I had to work.   I am at work.  I get yelled at by the daycare director, because there was a major thunder storm on Friday. I had to rush to get home.   I left all the windows open at home due to the mold situation .  The dog needed to be walked.   I couldn’t find Joy’s note and I didn’t know to send formula.  They brought it and I paid the center back.  I donated some of the candy Hope brought and now she couldn’t have to them for the preschoolers.    I called and explained we had a bad weekend and I didn’t get to look at the note.  My knee hurts, but I am not limping and it just feels odd.  Why waste time at the doctor’s.

Last night is really why I am up.  Hope was asked to water the garden by the neighbor’s.  The neighbor’s new hose isn’t working.  I struggled to get a hose to reach my neighbor’s garden from our house.  I have the dog on the lease.  Hope is fighting with me because she is scared of skunks.   I went to show Hope something and she hit me several times with the water from the hose.  Joy is teething.  She got too much medication.  We realized it immediately and ended up paging doctors an calling poison control.  I was just sitting down to do Joy’s scrape book.  I don’t do baby books, I do scrape books, when my husband told me. There I was in dripping wet clothing freaking out about it.   It had been an awful night of running late because today is that overnight at the water resort hotel Hope has been begging for.  I couldn’t sleep until midnight.  This morning I woke up at 4AM.  I don’t get it.  I keep trying to sleep and to have a good week, but I end up screwing it up somehow.  I am having a hard time finding the balance.  What scares me is this.  When I had breast cancer no one showed, I am so aware of being a lone in the universe.  Joy’s party kind of drove the point home.  I keep trying to accept my reality, but there is that huge hole in my heart and if I could only quiet the desire for more.  I need a bed and a hot tub at that expensive hotel.

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.

August Already? The Birthdays of The Rainbows

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

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

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

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