Why not?

This is the post excerpt.

It’s been quite some time now that I have apparently been reading other people’s blogs.

I didn’t even know what a blog was until I took a training for a new venture I began not so long ago.

I’ve actually begun quite a few new ventures over the past year. 

And somewhere along the way I decided that as an amateur, some would say, I have my own opinion I would like to share!
So here goes yet another new venture. I’d like to start blogging my random thoughts I want to share! 

This blog will have many different topic within. I hope you enjoy it and I really can’t wait to start blogging away!

Oh yeah and my user name has nothing to do with food. Chew on that!

Road trip…

It’s just wrong that I feel like I did something wrong. I not only drove out of town, I drove out of state. I went to my home away from home. I just love this beach!

We went there every year growing up. And I brought my little family there for the first time two years ago. We even stayed in a cottage I stayed at growing up.

This year it changed owners again. The new owner did not get back to me so I contacted another cottage owner further down the beach.

The guy called me as soon as I booked our vacation. Which also felt wrong. He basically told me it was only available because someone had just canceled due to this pandemic. He couldn’t guarantee if anything would be open and was worried I might not be happy with the cottage set up. He offered multiple times to come down ahead of time to check it out as I was being offered a full refund if I wanted to cancel up until the the 15th of this month and a refund minus the service fee up until the day before.

What really felt wrong about it was that I’m a teacher who is supposed to be “available” and we were specifically told they didn’t want to hear about anyone going on vacation. So I never posted about it in social media. It was like a big secret! I did however work from out of state the way that I would have at home. And I even went in the day before I left to take care of my reason to physically be in the building every two weeks for paperwork.

The first time I asked if it was available was Memorial Day weekend. He didn’t get back to me before I booked something closer to home. Which also felt wrong, but so needed. We weren’t allowed to go camping yet, but they let me rent a cabin on a private beach. So I did it! Now you can go camping btw. They changed that the Sunday of Memorial Day weekend.

The next time I asked if it was available was the day after the riots and looting started in my county. My city was threaten that next night. I didn’t feel safe with my 3 year old to be honest and I went somewhere I hoped would be safer.

I also felt bad that I wanted to do this alone with my baby girl knowing my husband had to work. He couldn’t come with us.

It was available so we left on a Tuesday morning. It’s quite a drive so we made it worth the trip and stayed till Friday. I do like the place and we will be returning the end of the month after school is out. We’re bringing the boys this time (and my husband of course).

The beach reopened this past Monday to moving activities. No sitting on the beach. We had the beach to ourselves Tuesday and Wednesday as they were both cold days. Thursday was the first day it was really a nice warm beach day and the amount of people increased as the day went on.

There is a reopen protest planned for Saturday. I was glad to get out of town before that. I was told they had been having peaceful protests over there but still it sounded like it was going to be packed. The state decided to allow sunbathing today as we got ready to leave. I read the “storm the beach” event was still happening as a celebration of one win but to continue to push for everything to reopen.

When we got back to our home town tonight, we ordered a pizza. As the delivery guy gave my husband the pizza he warned about staying away from a neighboring city. He also said they planned to block the streets so they couldn’t come into our town.

I really had hoped some resolution had been made at this point and that this might die down. I guess it’s going to continue anyways. But I’m at least home again and not breaking a curfew or anything anymore. I am still feeling very nervous here.

But I have a trip coming up that I think is going to better than I imagined when I booked it. At the time I didn’t care if we had to stay in our little sandy backyard and order out. They have now opened the streets for outside seating and closed it off to traffic so people have more room to walk. And the beach is open! I sure do hope the playground is open when we come back. And baby girl wants to try the water slides!!

New normal

What is the new normal? I guess we’re about to find out?

I have hated the idea of my baby girl living in a world where people have to wear a face mask.

And I’m not really sure how to tell a 3 year old child they have to remain socially distant while playing with another child.

I had her wear a mask a couple times now. One time was to get ice cream. The other was to run to our corner store for milk and apple juice.

It’s crazy that my daughter has already seen me wear a mask with my brother and mother at times. So maybe it’s not such a strange thing. When I asked her why people were wearing masks in our neighborhood she told me because people were sick. So I assumed she understood.

She did react to seeing someone running with a mask the other day. She said why is she wearing a mask?

And then I was with her the same day when she saw someone’s used mask on the ground and she picked it up. What a jerk. Your mask is to protect other people and then you throw it on the ground for someone else to pick up? I scolded her because we were in a parking lot and she also tried to run away from me at the same moment.

I allowed my child to play with a friend’s friend on her birthday. She also came to my daughters party this past January. It’s sad she couldn’t have a party out somewhere due to everything being closed. My daughter was the only child her age to play with. And she loved finally playing with another her age as well

And I feel guilty. There were too many people there that day. But I don’t at the same time. My daughter and I’m sure my friends as well both needed that.

I’m waiting to hear from the soccer league I paid for her to join that never started. They keep saying they are delaying the start of the spring league. But they are having signups for summer which confuses me.

And now I received an email from her new preschool (where she went for 4 days before they closed. They are offering to finish the school year over the summer. I’m not sure I would have considered sending her to a program like that before now during the summer. I’m a teacher and have the summers off. But maybe she would benefit from going back to a routine with other children to play with.

I never wanted to have an only child. It tried to have multiple close in age so they’d always have someone to play with like I did (my younger brother). The past few months have made me sad that she wants to can’t play with other children.

And just as I thought I made a decision not to try again, my daughter made a wish before blowing dandelion seeds away. She wished for a little baby. She clarified a little brother. And then she said she wanted a little brother and sister. Breaks my heart.

View on Education

I had a colleague comment the other day on a social medial post. I will never forget her quote:

“It’s like doing all the things you don’t love, and none of the things that you do.” ~Bacon

We’re both music teachers in different districts. I haven’t seen her in years, but I knew exactly what she meant.

I was told when I was in college getting my masters, that the field of music lended itself most naturally to authentic assessment. It was a tool the Ed Pyche program was pushing us to advocate using in our careers.

There isn’t a written test or assignment that can show the progress I’m looking for in my class.

When this pandemic started we were told our students did not have access to quality internet at home. We were to prepare packets of paper for two weeks of work to send home. That day I chose to do inventory in my classroom. What was more important than anything was that they had their instruments at home. I threw a packet together explaining how often and how much I wanted them to practice every week and a list of things they should already have to practice. But how could they do any of that without their materials?

The next couple weeks I spent more time doing inventory hoping most had picked up their belongings. I still had a list of students who hadn’t and made calls to each one. Some of them didn’t even know about the parent pick up days because they hadn’t received the phone call. Those parents, I was told, opted out of general announcements and only received emergency announcements.

The next packet I sent home outlined practice methods since I am no longer able to stand next to them while they play. I also included the first paper item they could return. A practice chart. This way they could do something most band teachers require but I never have before. I figure it would reinforce the request to practice. I helped set up the parent pick up tables that time as I had confirmed each instrument that was being picked up could be labeled and left out there this time.

Then we were told a technology survey was being performed and if they were there virtually to teach them. I have tried to line up my paper packet assignments and with my google classroom as much as possible. Google meet does not work for large group ensembles. Students can request a one on one lesson and it does work well for that.

I have created more virtual opportunities for help with practice in SmartMusic. This program is being offered for free through the end of the school year. I have had little interaction with this from students. It comes with its own practicality issues. My students are unable to receive the email to continue enrollment as the district blocks it. They have to use personal emails because of this. The program is not available for use on phones and requires a microphone to submit assignments. Our elementary students were not allowed to take their chrome books home so they do not all have access to the required equipment.

I am trying to figure out how to create a recruiting video for the next years incoming band students. I have asked students for help with this and have received little response. I wanted videos of students introducing the instruments of the band. I’m planning to make another round of calls to the students I think might be willing to help.

I also had an idea to have students send me a recording of them playing their part so I could layer it and have a virtual concert to share. Based on the responses so far I’m not sure this is a feasible goal at this point.

I had a lesson the other day where I realized a student had forgotten how to play eight notes evenly. Then a couple days later it happened again with another. This means these students have been practicing it wrong this entire time.

And then I had a lesson where I couldn’t see her fingers or take her instrument to look at the keys, but I knew it was broken. By the end of the lesson she agreed and realized a couple keys did not move when she pushed them. Coordinating repair is not easy at this point either. I’ve done it many times now. Thankfully our company has continued to offer loaners and been very cooperative.

Every two weeks I continue to pack my home office into my car to copy more packets. I’m not recovering much back.

And now we are told we are grading with an S or a U. Nothing in between. How do you fail kids during a time like this? Is it really their fault? But if I give them all S’s then am I showing this worked when it didn’t? I guess I have many phone calls to make in the near future.

NYS on pause

I’m a part time band teacher. I travel an hour to work. My daughter’s preschool/daycare is closed and I’m apparently essential. Thank God I have in-laws who can help when I need it.

My first reaction to this scenario was something I feared to say out loud. How the hell am I am considered essential?? I mean wait. I’m lucky to have a job. And I can see now more than ever how important teachers are in the life of a child. It did take a few weeks for this to sink in.

I have delivered food to the homes of students. I helped set up a parent pick up/drop off of work day. I assisted with getting a three day run of food organized and bagged to be delivered. I participated in a “we miss you” teacher parade around town. I have also printed and stuffed packets every two weeks to send home to my students. I use my google classroom for those able to be in there. We have had google meets for lessons and even a band council meeting. I’m having a hard time hearing from a lot of my students. They say to teach the ones who are participating. But I’m more worried about the ones who are not.

I am disappointed because I was hoping to move closer to work once they made me full time. I guess there’s no hope of moving out now. And again, I’m lucky to have a job. A job that I truly love.

I knew it would happen; I found myself in a meeting defending my program. I was told for the first time there was no plan to make my position full time. And I now have to compete with other electives the same periods as my beginning band program. Thankfully I currently have good numbers. Chorus on the other hand was already struggling. I feel bad for my colleague.

I am not a political person basically because I feel like politics is always an argument and I hate arguing. I am struggling with the political comments surrounding this pandemic. I basically have one opinion. I don’t watch the news, but if I do I expect to hear someone intelligent addressing the people. I personally found comfort in listening to Governor Cuomo speak daily for the first few weeks.

School is now closed for the remainder of the year. We are expected to grade students now on this time away from school.

My daughter was signed up for a soccer class that never started. I’m still confused if it ever will. I feel so bad for my daughter. She led such a busy life and now can’t see or play with anyone.

I am grieving many, many losses within the past year. I originally felt like maybe I needed this time at home. At first, I truly enjoyed my time home with my daughter. I’m not sure what the last year has done to her but something is happening right now that I’m not sure how to read with her. I’m sure she’s reacting in her own way to this but I’m having a hard time dealing with my own emotions I guess. I feel like an awful mom right now. Working from home with a 3 year old is not easy. And sometimes I have to tell myself it’s just gonna have to be good enough. We can only do the best that we can right?

I wonder what the future will hold. I do know that I am scared enough to listen to whatever guidelines are provided. Even if everyone else doesn’t agree.

My husband and I are not on the same page at all about this pandemic. It’s really hard to live with someone who isn’t scared at all. You would think this would be a time when people value their family and their safety more than ever. It says a lot about a person if they don’t. I’m having a hard time with this in particular.

What a year

Coming up on a year since we lost the twins. They say everything happens for a reason.

I guess my reason became clear to me less than 3 months later.

My mother was diagnosed terminally ill the same month my brother was discharged from an agency that took care of him for 22 years. I became her health care proxy and took over as the second for him.

I now realize that my mother could not have watched what I had to in regards to my brother. He was born with cerebral palsy but his health issues the past few years became tremendous. She couldn’t accept the continuously changing baseline. She only wanted to see the son she knew before.

God left her around long enough for me to talk to and occasionally ask for advice. But he took her first in October.

My brother passed last week. I am honestly so glad that his pain and suffering have ended. I’m not sure why God let it go on for as long as he did.

I’ve never felt so angry at the system. My brother fell through every crack that existed. Every step of our journey was a fight. I’ll never understand how we have so much in place to protect people with disabilities and their rights but the system turns their back when they become too sick to care for within services meant for them.

66 and 47 in nursing homes and now gone. Why is life so cruel?

Someday I vow to make a change. I’m not even sure where to start anymore. There’s just so much wrong with the system. But for now I will wallow in my grief and piece together what’s left in my life I practically dropped for them.

Let it go. Life is too short.

I am shocked still by a damn social media conversation I had this week. I made a decision to block her so that maybe I won’t be tempted to continue the apparent argument. Unfortunately it was a family member, in law side but still family.

I was actually told I needed to let go of my anger. That I was so angry in life it was spilling over into my comments on Facebook. I’m not really sure how that could be true. And the main reason I think that is because the hurtful words started with her telling me I don’t know when to stop. I just watched her having words with my husband in a group message that started just like that. And all he was talking about was not being invited to a family get together she shared pics of in the group.

She told me I need to let my anger go and enjoy what life brings. The funny thing to me is this argument started on a picture I posted of my view from the drivers seat on a beautiful fall morning.

I was enjoying the moment. So I snapped a pic. I guess I didn’t anticipate the lecture I’d get about my precious cargo and how I shouldn’t have done that while I was driving.

And then I guess I continued it but I only did what she did. She posted a pic from the middle of the road of a beautiful sunrise a few days later. Of course I commented.

After she told me multiple times to let go of my anger, she actually had the nerve to tell me she does know what’s going on in my life because it’s all over Facebook. And that I needed to let it go. Life was too short. Really? You think EVERY detail of my life is actually on Facebook? And I’m still not even sure where any of this is coming from.

If you knew my mother was placed on hospice care last week you probably wouldn’t tell me to let it go. If you knew I had to attend that hospice meeting via a phone call during my lunch at work you still wouldn’t understand. Before this school year started I had been on FMLA since May. I am so broke and in debt I can’t even afford to take the last 4 weeks of FMLA I am still entitled to take. And the week that my mother finally goes on hospice care has to be the first week my students start their band lessons. Beginners waiting for their instrument I was holding till they learned how to not break it, in their first lesson.

Or maybe if you knew about the countless doctors and surgeons calling me during the day while trying to figure out how to be there for my disabled brother for his appointments and procedures around a work schedule an hour north of my house, all while trying to keep the best interest of my 2 1/2 year old mamas girl in tact and feeling like I deserted my mother. Why did life make it easy to see my grandmother every day when she was dying but life won’t allow me the time I’d like when I could loose my own mother any day.

And the nursing home calls me all the time. If you knew what my heart felt like every time I saw that number in the caller ID you probably wouldn’t tell me to let it go. I’m the first phone call for everything including being sent to the ER. I do get many other phone calls as well though.

Or the countless papers I have to print at work and then fill out, sign, scan and email back. Consents for this. Consents for that. The process to get my brother back where he belongs in the Center for the Disabled is taking forever and unreal if you ask me. Care coordinators. Nursing home laison. Business office staff. Insurance companies. Social Workers. Did I mention doctors? Nursing supervisors.

I don’t have time to call and update every person who actually cares. She even said to me I shouldn’t take out my anger on people who love and care about my family. I’m not really sure why that gives me the feeling that my precious cargo is what she cares more about than me. But my posts are for those people who truly care about my brother and mother. People who might want to know what building they are currently in if the wanted to go see them during a time I’d prefer someone check on them since I can’t as much as I’d like. Clearly she doesn’t care about the posts anyways but the details for sure have not all been posted. People who actually care pick up a phone and talk to me.

And if I don’t have enough things to do, I am overwhelmed when I come home because my house and yard is currently a disgrace. My summer off should not have been what it was. I have my mother’s car still sitting in the driveway that won’t start and has flat tires. My husband is arguing with me about the lawn ornament. But still I’m the only one who can apparently get anything done. I guess it’s just waiting for me to buy the parts it needs so we can sell it. I already found the mechanic willing to do it. Why can’t I have a man who just takes care of such simple shit? Battery and alternator. Not a big deal.

And the arguments never end. He just loves to argue over every thing we talk about. It doesn’t matter what the topic. I don’t even have energy to argue. I hate arguing. Please just stop.

And maybe if you knew the real story of my life being married to your nephew you’d understand that the shit posted on Facebook doesn’t ever come close to reality.

The strongest woman I’ve ever met

When we think about my mother, I’m sure everyone in the room can immediately recall at least one specific memory. Even if you didn’t know her well, she had a presence about her that just couldn’t be missed.

There are many words we could use to describe her. But the one that stands out to me the most is strong. She had a tough life. Sometimes I sit here and feel sorry for myself but then I think about her. She has literally never had it easy.

She was the middle child. She grew up with two older siblings and two younger siblings. She witnessed things in her youth that her two younger siblings wouldn’t even remember or weren’t born yet to witness. During that time her older siblings were married and had moved out. My grandma Rosie didn’t drive. My grandfather, who I never met, but from what I heard was an alcoholic and at times didn’t come home at night. When he did it seems as though he often took his emotional abuse out on my mother. At times the power would be shut off because he forgot to pay the bill. And she was also aware that he was keeping an apartment down the street for his girlfriend. She grew up in Watervliet where she could walk to see her friends and have a social life. During her senior year he moved them away from all her friends up to Shenendehowa where she could no longer walk to do anything. She said he was showing off to his friends by buying that house.

By the time she was 19 she was pregnant with a man who moved to Florida and never even met Jeff. And let’s not forget her first child was born not breathing and rushed to another hospital immediately. This was during a time when de-institutionalizing was just beginning and they actually brought her papers to have him sent to one or put up for adoption. She looked at them and said no he’s my baby!

She was lucky to start a good job right out of high school to help support her mother who also watched Jeff for her. They told her he would be developmentally delayed but would do everything a normal child does, just later. By the time he was 3 he still wasn’t walking and she had him evaluated at what was then called the CP Center. He was diagnosed and finally started receiving services.

She met a man at work who wouldn’t leave her alone. She actually said to me she finally agreed to go on a date with him because she felt bad for him. He was getting a divorce and had two children he wanted a suitable place to bring them to when he had time with them. When they decided to get married, the Catholic Church wouldn’t move through an annulment of a prior marriage (before the recent divorce). My father was apparently married 3 or 4 times. Because of this they were married in front of a judge. My father also adopted Jeff and gave him our last name. After a short time with two babies and a disabled child, he was diagnosed with lung cancer. He fought hard for longer than they gave him but clearly passed when I was only 5 years old.

My mother couldn’t go back to work because the bus schedule for Jeff was too unreliable and his day program hours didn’t give her enough time to work a full day shift. She took care of him until he was placed in residence while I was in high school before returning to work. We grew up on social security and I never would have know if that was a struggle. She made sure we had everything we needed and we never felt deprived of anything. She brought us to church and religion every week while refusing to take communion due to her personal issue with the church. As soon as my father passed, she received the paperwork approving the annulment and that just made her mad. But she still believed we should be brought up with the Christian background and told us it was our decision if we wanted to become confirmed.

And then another word comes to mind especially when reflecting on the most recent events. Stubborn. She never lost that desire to be independent right up until the moments before being diagnosed with stage 4 cancer.

And even then she still put up a fight. It was like she didn’t even hear them say 3-4 months which was without treatment but there was never any guarantee that treatment would change that. It was called palliative care from the beginning.

66 years old and never smoked a cigarette in her life. No drugs. Maybe some drinking here and there but she was a total lightweight. Stage 4 cancer. How is that fair? A woman who worked her ass off her whole life. She couldn’t even completely enjoy her first granddaughter I finally gave her because she was already sick. Her stubborn ass just kept refusing to admit it.

She didn’t go on hospice care because she was actively dying. She was told there was nothing more they could do for her. She was never a candidate for surgery. She could have chosen to live her last months without treatment. But she didn’t. She fought through whole brain radiation that didn’t touch the tumors. The side effects were the same as the original issue, inflammation and swelling of the brain so the risks eventually outweighed the benefits. She toughed out 4 immunotherapy treatments that actually did shrink the kidney tumors but did nothing for the brain tumors causing the most concerning symptoms. Once they had to increase the steroids again the continued immunotherapy became out of the question.

She was convinced to put a DNR/DNI in place explaining to her that if her heart were to give up it would mean her body did too. But she never refused treatment.

Stubborn. That’s what she was. And strong. The strongest woman I ever met.

I’m not supposed to be here

Here I am blogging during another nap thinking about my angel babies.

I should be painting and organizing a nursery or packing a hospital bag or even worse visiting my baby girls in the NICU till the end of May.

I’m supposed to be on maternity leave but instead I have no infant babies to take care of. I no longer have a reason to be out of work through the end of the school year.

I will be returning to work before the goal date of delivery. I am not sure how I will look my students in the eyes that I was told cried when the school shared my sad news.

How is it that plans can change like that overnight? I’m not supposed to be here. I just don’t understand.

What it means to have hope

That first appointment when the doctor stuck up his two fingers, I was scared.

Two? I’m sorry what? I was still waiting for a heart beat confirmation!?!

I thought to myself that this instantly became a high risk pregnancy. At that point I had no idea what we were in for.

At the next appointment I watched the concern grow on the docs face before he admitted he couldn’t find a membrane. Mono mono twins is now the diagnosis. The rarest and highest risk twin pregnancy that could exist. I was immediately referred to a Children’s Hospital 4 hours away for a second opinion.

Before that second opinion I found out his true reason for sending me. He thought they would “get rid of one” to avoid the inevitable cord entanglement. This hospital apparently no longer does that nor would I have even been ok with that? I wanted them both.

The cords started to become tangled as expected. By the time I got to the second opinion they were the worst I had seen so far. But they had good blood flow. The babies were the same size and healthy. And I was given my options for an intense monitoring stage to begin once the babies became viable.

There was much disagreement between two of my docs back home. So much I almost called this hospital as they too were following my pregnancy.

But I made decisions based on the “Hope” that they were wrong. That this cord accident they kept talking about couldn’t happen at this point. We made it to 24 weeks. Wasn’t that the hardest part?

I wanted them to stay inside of me as long as possible because of the risks associated with a 24 week old baby. I thought if they didn’t have as much room to move that the cord entanglement couldn’t get worse. That was the hope anyways.

And then it happened. At 25 weeks and one day I was told there were no heart beats. He said it had just happened. They were just drinking cuz they had fluid in their stomachs, bladders and the amniotic sac.

They sent me to the hospital where I asked for a second ultrasound. I still hoped that maybe they were wrong. Maybe he missed their little heartbeats. The second doctor sadly confirmed there were no heartbeats.

Even after I delivered them I still had hope. I had read an article once about a baby who’s heart started beating again when they laid the baby on his mother’s chest. I held on to one last hope that maybe at least one of them would be ok. They were perfect little angels!

And then shortly after I found out what a rainbow baby was. I ask myself now if I already had my rainbow baby and for some reason wasn’t appreciating that. 4 pregnancies, two missed abortions, a perfect full term baby girl and then my two stillborn angel girls. I’m not sure if I have enough hope to try again. I can’t believe I’m not pregnant anymore. I can’t believe we had to say goodbye before we said hello.

Our momo angels

With a broken heart I just re-read my last post about my baby girl. I can’t help but wonder if I had chosen them over her if they would be here today. We hadn’t even met them before we had to say goodbye.

I was told if it wasn’t for my baby girl, I would have been hospitalized at 24 weeks. I was taken out of work to be available for prenatal visits during the day and then go home to my baby girl.

I had my first appointment during the “intense monitoring” phase at 24 weeks and 4 days. I had two due dates going at one point and stuck with the later one because I wanted to keep them in me as long as possible. I told myself it was 24 weeks that day but they never actually changed my due date.

We decided to wait to do the steroid injections because the babies looked great and one hadn’t been able to move in 4 weeks. We hoped they wouldn’t be able to continue to tangle further. The plan was to do them at 26 weeks since my high risk ultrasound doc said something develops in the lungs that week to make them more ready for the steroids to work.

I had my next appointment at 25 weeks and 1 day. There were no heart beats. He said it had just happened as they had fluid in their stomachs and bladders and the amniotic sac.

I went through labor and delivery for two beautiful sleeping babies 1 lb 9.6 oz and 1 lb 9 oz each 13 inches long.

I only had to be away from my baby girl for a little over 24 hours. I am so lucky I had her to return home to after this tragic day.

I never knew what a rainbow baby was before joining a momo parents who lost group. I have lost two babies prior to my momo girl’s. I think that maybe I already had my rainbow baby and didn’t even know it.