Effen Mammograms

Let me preface this post with: I’m fine. I had my yearly mammogram which yes is totally IMO necessary, and uncomfortable at best. At times I find it painful, not like I’m going to pass out painful but enough that I’m like ok that’s enough. I’m done. So at the end of December I had my annual mammogram; and I was called me back for additional diagnostic images. Well that was a sucky feeling, the worry that “they found something” and it wasn’t good. I made the follow up appointment for this morning. Turns out as per my union contract I am allowed 4 hours paid for preventative health care such as a mammogram. Go union! So anyway, I’m waiting all month for this appointment. To be honest I put it out of my mind and didn’t think about it until this past Friday.

Briefly here and there I thought about the appointment during the weekend. Sunday was mainly consumed by Thomas’ talking and taking him shopping for new sneakers. My guy wanted Nike Jordan’s. Since Thomas will wear the death out of things he likes, he got the Jordan’s. They’re really cool, Thomas has great taste.

So I go to work yesterday, we were busy as usual so I didn’t think about the appointment until I was leaving for the day. That’s when I began to get nervous. We ate dinner and I camped out on the couch watching television; which I really don’t do often. Well watching television and text fighting with Sam over her NOT dying her hair wild colors. You can guess which side I was on. This morning I was up stupid early, like 5:30. I’m usually up at 5 ish for work. My appointment was for 7:45 am, so 5:30 was stupid early. Tommy took the day off for me, he’s great.

We get there on time, I’m called to go in on time (impressive) and all the testing and results were completed in an hour. Like I said I’m fine. The tests were read by a physician at the radiology center and told to me at once. I really can’t complain. Effin mammograms.

Backing Away

I’ve written another email. I might be on a roll. This time it was to the current Pastor of the church I was a member of and used to attend. I’ve rescinded my membership. The Pastor responded much in the way I thought he would. Telling me that my family has been distant from the church (true) and that we’ve been prayed for, they’ve grieved the distance between me and my church family and we have been ministered to but they have disappointed us (?). I didn’t even give an inkling of such. I found the response to my email a bit self depreciating with a sprinkle of hopeful guilt trip. I expected better to be honest.

When I joined this church I was well aware of how conservative they are as a whole. And to some extent I agreed with most of their stances. However I have changed in a way that I can no longer shadow my beliefs. Of course if I were to express those beliefs to the formerly attended church I would be gently told how wrong I am and proven so by extensive quotation of scripture from the Bible. God is perfect, sovereign, all knowing, and does not make mistakes. Even when someone is living a life deemed sinful by those who live a conservative Christian life (such as LGBTQ persons), I find it extremely difficult to believe that God in his infinite wisdom has made an error in creating people who are born a certain way to live their entire lives committing sin which is displeasing to God. It doesn’t make sense to me.

I’m also pro choice. (Gasp!) What I’m writing is not meant to be controversial or challenging. This is my blog and my thoughts. And as much as I may love you, no one will change my mind. We all have solid reasons for how we feel. I’m in no way turning my back on God or feel anger towards God because I’m not getting my way in life. I’m grateful to Him. Without God’s presence and ever so wise guidance I would not be where I am today in my personal or professional life. Jesus Christ remains my Savior. To Him I owe it all.

A Little Rambling

When I was younger; like registering to vote young; I considered myself not so conservative; pretty liberal but not too liberal. I had a sheltered, young, middle class woman view of the world. At the ripe age of 18 I had a job and was well versed in having taxes being taken out of my paycheck. I didn’t like it but I knew that’s the way things were. Fast forward to me graduating nursing school, my first “real” job and I learned very quickly the value of employment with health benefits. I also learned about welfare and Medicaid/Medicare and where the tax money that was taken out of my hard earned check was going as per our government.

Tommy and I were married and expecting Thomas. After a couple of months and many years of therapies, evaluations, MRI’s, etc… we found that Thomas was special needs. Rarely to never did we not pay for anything ourselves out of pocket or we used our employer provided health insurance for services or doctor/specialist appointments for Thomas. We didn’t know any other way. Until I was told about the Medicaid Waiver program for people with special needs. With the Waiver the government waives the income of the parents and the disabled child/person is eligible for Medicaid health insurance as well as services to help the special needs child. One service we had through the waiver program was a very dedicated woman named Debbie who came every week to my house to work with Thomas on things such as going to stores in the neighborhood, using money, crossing streets safely, etc.. And she would take all my other kids with her. Debbie was one of a kind. Everyone, especially small businesses on Forest Ave knew Debbie and my kids.

You see when you have a special needs child every freaking thing is a secret. And you have to hook up with other special needs parents to find things out. Or spend a lot of your life on the phone or computer going from one resource to another to discover what is are out there. I did a combination of both. I spent a lot of time on the phone and then discovered a priceless online community of moms who’s children were similarly diagnosed like Thomas. Thomas was the youngest of “our” children when he was 6 years old. I learned so much from these incredible women from all over the country. We are fortunate to live a ferry’s ride away from the greatest city on earth so finding doctors who are specialists in Manhattan wasn’t difficult. It’s the day to day living you need the most support for and that’s what these women did for me. They listened to vents, gave praises to doctors and therapist who “got it,” provided invaluable IEP meeting advice and did not judge.

I wouldn’t want to relive those years with my son, things were so so hard. But…I have learned so much from my wonderful friends. That nothing is as it seems on the outside, my favorite: “Normal is just a setting on your clothes dryer,” that everyone has shit they are going through. And most of all, try to be the person you wish you had when you see someone where you once were. A lot of times they won’t listen at first but you can always plant a seed.

Burning a Bridge

I can honestly say I’ve not knowingly or intentionally burned a bridge or irreversibly ended a relationship especially a professional relationship. Until now. A trusted specialist physician I was a client of; who does not take insurance; partnered up with a physician of the same expertise; tripled his rates, now requires a credit card on file for payment and has limited his availability to his clients. This was announced over 3 separate emails with a spin on the details as if this was a great, positive change for the clients.

To be honest I was at first appalled at the changes to this physician’s practice. I had received great care from him, he would accept emails or texts for quick questions or clarifications, and always prompt when an appointment was necessary. I would pay out of pocket and submit a claim to our health insurance company and be reimbursed the majority of his fee so being a patient of this practice wasn’t a hardship. However to continue with this practice under the new policies would be a financial hardship. I would no longer be a client of this physician, it’s not just the increase in his fees, it’s the tremendous change in the practice as a whole. To read the new impersonal emails describing the unacceptable new office policies felt insulting and unreal.

So I wrote an email. I specifically stated that I was no longer this physician’s client. I also stated I would be under the care of a physician who provides more personal and individualized care. Essentially I intentionally burned a bridge. I feel bad about that. I’m really not intentionally snarky, but in that email I was.

Being Thankful in The New Year

I’m sitting in the nail salon thankful that I’m able to get my nails done. Thankful for my husband who is my person who sees my good, bad, unreasonable and irrational self; brings me back and loves me anyway. I’m so thankful for my kids, my family and my friends. I have a small circle of friends I consider like family who are essentially the most loyal non blood related to me; people on this earth. You know the ones; you don’t speak often enough or on a regular basis but when the shit hits the fan there they are. I’m so very thankful.

I was fortunate that I saw all my children plus son in law yesterday, the brand new start of the New Year. Lelly, my Sam and Thomas stayed for dinner while Alyssa and her husband Sam went to his grandparents for dinner. I’m thankful that Thomas is doing well in his group home and that he has a wonderful nurse who oversees the group home residents, and is on top of his meds and the long term side effects. Her name is Peggy and she never hesitates to keep me informed of all things Thomas.

Tommy and I drove my Lelly to her home in the city on the upper east side. She had a heavy jacket and other things to bring back and for her to commute taking public transportation would have been too much. We had a nice ride and when we arrived at her home we went up to see the apartment. Leaving her was still difficult. I hugged her for what seemed forever. Poor kid stood there waiting for me to let go. I’m glad she’s good natured and loves me enough to let me hug her for as long as I want.

My Sam is doing well. I’m thankful she and I are close. I listen to her and I’m grateful that most times she listens to me. I know she trusts me and I don’t take that trust lightly. We both were off (her from school and me from work) for Winter break this past week. We had good quality time together. We both return to our realities tomorrow. And that’s ok. I’m ready to go back- I say that now, haha.

It was really nice to see Alyssa and Sam even if for a little while. Alyssa and Lelly took the ride to go pick up Thomas and they were all funny together in the car. Thomas gets dramatic when he tells us something going on in his life and the girls are so used to his drama we’re all like, “ Okay Thomas: We get it!” Or if he is causing trouble in his house or day program I’m always saying, “Stop! I didn’t raise you to act that way so cut the crap!” Alyssa is such a great big sister to everyone. She’s sweet and honest and never hesitates to stick up for a sibling. I’m very thankful she grew into the person that she is.

So think about things and be thankful. We all have shit in our lives that can cloud the good, but the good is still there you just have to look a little harder to see it.

And Happy New Year

With just a couple of days left in the year 2022, I can’t help but think of the changes this past year has brought. I have an awesome new to me nurse co worker. Her name is Meg. We were hired by the DOE at the same time, trained for the position together but didn’t really know each other until Covid closed the schools and we were sent to Harlem to work at a nursing home. I immediately got in touch with Meg to carpool since we live close to each other. Thankfully we weren’t needed in Harlem. Fast forward to the end of June of this year and Meg was sent to train at my school for a nursing position at a different site with similar medically fragile students. We hit it off again and managed to have her work the summer with us; after the summer Meg was able to stay at my school permanently. She’s an awesome person to work with; helpful, thoughtful, ready to jump in when needed, and doesn’t keep score of who did what.

The summer of 2022 brought Tommy and I to the Happy Island of Aruba. It was amazing. The people there are so invested in making sure you have a wonderful time. I’ve never experienced anything like it. We had a great time. My husband is easy to go away with. He rarely complains, will let me get shopping out of my system and even hit the casinos so I could play the penny slots. He also loves to laugh. My husband and I have been through many difficult situations in our years of marriage and he always manages to be strong when I am not. Tommy somehow will find humor where there doesn’t seem to be any place for humor.

2022 brought changes. As I’ve mentioned: My Lelly graduated FIT early and moved to the city with a roommate. I miss her even though I’m happy for her new life. When she came here for Christmas she made me laugh even when I didn’t feel like laughing. That’s how she is. And she calls me out of the blue, it’s sweet.

2022 also brought a new physician in my life, a gyn in Manhattan who understands menopause like the back of her hand. Why I had to go to the city to find a knowledgeable doctor I’ll never understand but she is amazing. I emailed her with an issue I was experiencing and within minutes she calls me; we talk and she then prescribes exactly what I need. Talk about amazing. I am in awe of her compassion and understanding and being a real person.

These are simply a handful of examples from 2022. There are plenty more; good and not so good. I’m not sure you all would want to read about my whole year in review. I wish every one of my readers an amazing, healthy and happy New Year. And if it’s not so healthy I wish you all to find the best doctors to treat you. Don’t be afraid to go off this borough.

Life Lessons

I’ve learned many lessons raising my children. I’ve learned what it takes to raise typical children thanks to my girls and I’ve learned what it takes to raise, advocate for, and not take shit from anyone while raising my son. I know most parents of special needs children can relate. I’m personally friends with other moms who have had the same experience raising their kids as I have. Having one foot in the special needs world and the other in the typical child world. I also know many moms who did not continue to have children for whatever their reasons after learning their child was special needs. There is no “right” way. I personally can’t imagine life without my girls just the way parents without other children can’t imagine life with additional children.

We all have moments as parents that stick out in our memories more than others. Sometimes they’re happy moments, sometimes not so happy. Aside from the actual births of each of my children I have defining moments as a parent that have shaped me into the adult I am. Those moments do not end at age 18 when our kids are technically adults. I’m still learning about being a parent and growing as a person.

I learned to begin to advocate for my son when he and I were both “young”. Thomas was 6 months old and I was 26 years old. If I didn’t open my mouth and say what I felt was wrong for him who would? Being my son’s advocate taught me to not be judgmental, that it was ok to cry and it was ok to ask for help among other life lessons. I also learned to speak softly some of the times and very loudly some of the times. I knew my child, he was mine and no one could tell me different. Was I hard headed? Yes. Was I correct most of the time? I know most parents of special needs children are battle scarred. And we all have war stories. Some more intense than others, but nonetheless we had to fight for what we knew was right at the time.

My girls taught me to slow down and appreciate the small moments because they do become big moments. They taught me that just because they were typical children people weren’t always going to be “nice” and they needed an advocate just much as their brother. Alyssa, our oldest girl; the one who introduced us as parents to the typical world paved the way for her younger sisters. Lelly taught me to laugh with my kids when they were young and she still makes me laugh like no one other than my husband. She also taught me it was ok to grieve a bit when she moved out. I was so very sad to see her leave. I would say as sad as I was to see Alyssa move out after she married Sam. But with Alyssa it was different. More like a progression; dating then engaged, bridal shower, wedding; moved out.

When it came to my Lelly she did everything early. She arrived perfectly on time at birth but after that she walked early, ran early, rode a tricycle early, and later on graduated high school early, then graduated college early. She wanted to start her life. Tommy and I returned from vacation this past summer to the news that Lelly had an apartment, roommate and move in date. Omg I cried when Tommy and I moved her in to her own place. I thought I would be okay but after looking at all her boxes full of her things I lost it. That was so hard.

My Sam is teaching me many other life lessons I can’t get into right now. She’s definitely her own person and I’m learning a whole host of life lessons from her. At 16 years of age she’s watched me with my older children. There are 5 years between her and Lelly, 8 years between her and Alyssa; so Sam has many traits of an only child. Right now it’s only Tommy, me and Sam living in a house that once held 6. That’s pretty foreign to Tommy and I who for years were used to a very full house. Sam has much more growing to do and as her mother I have more learning experiences ahead to keep up with her.

Life is not dull and I thank the Lord for all He has given me. Not only has God been by my side during the storms, He has also shown me the blue clearing skies when the storm is over. I’m thankful to Him for He has never, ever let me down.

Merry Christmas

Merry Christmas to my faithful readers. Knowing I have touched some of you or even made someone feel less alone in a situation I’ve experienced and written about gives me a joy I can’t explain. There are so many times I wish I could be the person I needed by my side when things were tough or so very different than I thought they would or should be. I try to be honest, open and transparent in my writings.

We are celebrating Christmas this year without one my children present. This child of mine is ok and safe but in the interest of their privacy I can’t disclose the reason they aren’t here with us. No one is mad at another or taking a ridiculous stand by not coming. It’s more of an unforeseen emergency. I miss having all my children together of course, but on the more rational other hand I’m glad even though we aren’t together we’re all safe and we all love one another. There will be other holidays and Christmas’s where we will remember this one and be thankful for the times we are together.

I sound calm and accepting but I’m really not. I put up a good front. Inside I’m very sad and even though I’m incredibly thankful I have 3 out of 4 kids present, I’m sad on the inside for the outlier. I’m so so thankful that my kids can make me laugh under the most stressful of circumstances. Yesterday I inadvertently and totally unintentionally insulted one of my kids and when they pointed out my faux pas we laughed and laughed at my mistake. It was good to laugh. To keep my mind occupied. Last night we played the board game “Sorry” and it was good old fashioned fun.

I want to with everyone a very Merry Christmas even though I know many of you are celebrating in difficult circumstances and/or the face of your holiday celebration has been changed forever. I enjoy writing, so here’s to many more blog posts and hopefully many more moments worth writing about.

Being a Nurse, Staying Home, Back to Work.

When I first became a nurse I learned what it was like to be on the other side. To not be the patient but the caregiver. Working in the hospital I saw people in various types of distress whether it be physical disease/distress or emotional distress due to their new status as a patient. I often enjoyed the patient care I gave in the hospital but…and there’s always a but; it was really hard work. The patients were very ill and you have to take that responsibility to heart or you’re not doing your job appropriately. So you have very ill people who’s well being you were responsible for and the number of very ill patients you were responsible for was difficult to keep up with which often leads to a nurse becoming burnt out and leaving the hospital setting. Some nurses leave the profession all together and others look for different or alternative nursing positions.

After I left the hospital I wanted to leave the nursing profession all together. I couldn’t think outside the box of only working in the hospital. Also, Thomas’ challenges were beginning to emerge so we decided I would stay home. When Lelly was just under a year old I took a nursing position in a physician’s office. I stayed there 3 years. I think that job saved my sanity because in those years Thomas’ challenges and behavior were extremely difficult to deal with. He was hospitalized multiple times due to his aggressive behavior, in a psychiatric facility for children that was a 2 hour drive away. From there Thomas attended a residential school to address his behavior. He stayed there from ages 8-11 years.

In the meantime I wasn’t working. I was a full fledged stay at home mom with one foot in the special needs arena and one foot in the world of typical children thanks to my girls. I’ll always be grateful for them and that opportunity to experience being a regular mom of regular typical children.

I stayed home until Samantha was 9 and entered the work place as a nurse full time. It was great! I had a couple of jobs before I was hired with for the DOE and really got back into hands on nursing. I work with and provide care for special education and medically fragile students. There is not one day where all I do is pass out bandaids or deal with common complaints of a stomachache. There’s so many nursing tasks these students need, we are busy just about all day long. I love my job with the DOE. I can’t tell you how many people are surprised when I tell them I enjoy going to work. If I hadn’t become a school nurse in this capacity with District 75 I don’t know where I would be working. It wouldn’t be a hospital that I know for sure.

Conversations We Don’t Have

I’m talking conversations about mental health. All mental health diagnosis still carry a stigma. Even seemingly “normal” ones like anxiety. I’m not talking about feeling anxious about an approaching event or that feeling of anxiety when you have to go to the dentist or doctor. I’m talking real anxiety. Where your mind takes off in a direction you can’t control and there’s no calming down nor is there a happy ending in the scenario you have now decided could only be the new reality. I won’t even get into a genuine panic attack. Those who know; know.

It’s wrong that there are still quiet, whispering conversations about our mental health. I am respecting the privacy of those who have confided to me what they face and fight on a daily basis. I’m honored to be part of peoples’ support system. It’s not easy to describe the pit of depression. The feeling that you truly believe the world and those in your circle would be better off without you in it. It’s painful. I used to think people who committed suicide were selfish. That they never thought of their loved ones when they make that decision to end their own lives. Quite the contrary! The pain of living with the depression coupled with the feelings of hopelessness and despair and feeling you are less than nothing in this life push one to the edge, the brink of wanting the pain to end. It’s terrible and scary and lonely.

It’s scary to even reach out for help. Brave yet scary. No one wants to think they could be hospitalized for what they are experiencing if they are completely and unabashedly honest with a physician who specializes in mental health. But… if someone is suffering from a physical disorder there is no shame in seeking help and/or taking medication to treat the physical, a tangible illness.

I’m writing this because there are people who need to know they are not alone. So, so far from alone. I have people in my life that I worry about daily. And I have to keep my own anxiety in check when I think about the silent battle they face. We can all say until we are blue in the face that mental health diagnosis shouldn’t come with a stigma or misunderstanding attached; yet here it is the end of 2022 and we haven’t come far at all, IMO anyway.