Menay O; mom to 4, Christian and thrift shopper on the side…

I didn’t know the meaning of the word tenacious until I met the highly recommended; no insurance accepting neurologist who practiced way uptown in Columbia Presbyterian hospital. Neurologist Dr. Arnold Gold came highly recommended by Thomas’ psychiatrist (who also did not accept insurance). Thomas was 12 years old. I was still for the most part a stay at home mom with Tommy working extremely hard to support us.

Dr. Gold’s fee was $800.00 at the time. We made the appointment, discussed with his office what documents, evaluations, test results, etc were necessary for the Doctor to review before the appointment. I was to mail this packet to Columbia well before the appointment. I did what I was told. Tommy took the day off from work. Everything was set, the day arrives and off we go way, way uptown. We arrive and Tommy drops Thomas and I off at Columbia so we won’t be late, while he finds a parking garage. I check in with Dr. Gold’s secretary and she informs me they never received the huge packet of Thomas’ information I compiled as instructed. She was very busy calling other departments hoping it was just misplaced as it had been signed for when it arrived.

I’m hitting the panic button because of all the preparation, Tommy took a day from work, paying for parking and tolls; you get the jist. Dr. Gold made mention of rescheduling. Holding back tears I politely told him I knew Thomas’ history like the back of my hand, please can we keep the appointment. Dr. Gold agreed. Thomas and I sat across from the doctor and I went into this state of remembrance; telling Thomas’ story from birth to 12 years of age. Every doctor and specialist we saw. Who wrote what in a report: Which specialist ordered tests that answered nothing. Which physicians believed me; those that did not. We discussed every medication trialed with which physician. Medications that worked, didn’t work and what effects were very, very wrong. It was very intense.

Thomas began getting restless, who could blame him, this was not interesting for him. Dr. Gold then performed the most thorough neurological exam Thomas had ever had; this was not our first neurologist visit. Dr. Gold watched Thomas like a sharp eyed hawk through the entire exam. Tommy and I were so impressed with Dr. Gold.

After the exam Dr. Gold explained after reviewing Thomas’ MRI scans and multiple reports and the results of his physical assessment of Thomas; and the extensive history provided by his mother that Thomas has “static encephalopathy”. In plain language Thomas has brain damage that will not get worse/will not get better. This damage occurred either in utero or during birth. There was no definitive way of knowing at this time.

We received this information with very mixed feelings. First it was like a punch in the stomach. No one had given us such a definitive diagnosis with explanation. Instead for the past 12 years I faced years of disbelief, blame and traumatic stress trying to get help for this child.

When Dr. Gold wrote out his official report of Thomas’ appointment and his findings, he thanked the referring doctor, said it was a pleasure meeting Thomas and his “tenacious mother.” I had never been mentioned in a written specialist report. Omg, WTH does tenacious mean?

Google definition, “Tenacious describes being highly persistent, determined, and unwilling to give up or let go…”

I was never so complimented by a medical professional in my years of being a mother.

While raising my kids I never planned too far ahead for them. Of course I would think about what schools they/the girls would attend next such as junior high and then high school. Most of my time was split between what was best for Thomas and what was best for Alyssa and Lelly since the three of them are a package deal due to their closeness in age.

I didn’t try to plan their adulthood is what I’m saying. I did not feel that part of their lives was mine to plan. I never thought, oh that Alyssa will be xyz; or of course Lelly will be abc! Thomas; yes. I had to plan. When Thomas was 12 years old I was encouraged by experienced parents to ensure he was on “the group home list” with the Office of Persons with Developmental Disabilities. It was confirmed that he was already on the list, placed by a former care coordinator with my permission. That was one of the best choices made for Thomas. To not worry about who will provide care for him after Tommy and I are gone.

Alyssa and Lelly attended the neighborhood public grammar school, without much drama. I am not a fan of drama, the PTA, or mothers with perfect children. When Lelly was 5 years old Samantha arrived. She was a joy, a sweet baby and I was so happy to have her. Side note: no we did not “plan” on having 4 children; however all of our children were planned and very wanted.

So everyone grew up, raised similar but not the same. They weren’t all the same child. Same genetic gene pool, different people. The first time I heard the phrase; “the days are long but the years are short.” I almost fell over. So, so freaking true. There were some days that seemed to never freaking end. Meanwhile other days were over in a flash.

Alyssa finished high school after the usual 4 years. On to college. She graduated college in four years with her bachelors degree. My Alyssa is amazing, determined and talented. Alyssa first chose a private college in Manhattan to attend. She was not happy there and transferred to a great city college. She graduated in four years and secured a job fairly quickly working in the field of her degree.

Lelly being Lelly talked her way to graduating high school a semester early. Began college a semester before her peers and then in true Lelly form; graduated college after three and a half years instead of 4. She came into this world in her own fast way and has not let anything get in her way since. She chose a state college with affordable tuition. Both girls made very smart and economical educational choices.

Tommy and I never told Alyssa, Daniella or Samantha what to do after high school. Alyssa and Lelly chose the college route. Samantha chose a vocational route. They all worked so very hard to compete their education. We could not be more proud of our now adult children and the choices they individually made.

Yesterday afternoon we said goodbye to Brant, a man we have known over 30 years. He died suddenly, and even though we hadn’t spoken in a while the news hit hard. Harder than I thought it would. Brant was very close to us during very trying times in our life. When Thomas was about 3 years old, I received news in the most cold hearted manner from a “professional” that my son is mentally retarded. Of course I was upset and came home crying. Brant was already at my house with Tommy. As soon as I entered the kitchen I was told to get my bag, we were going to the movies and Tommy was staying home with the kids. We saw “American Pie.” It was a great time.

Yesterday was sad. Actually the days leading up to yesterday were actually sadder because of the processing and realization that Brant is gone. Memories come back in a flood. You’re careful what you talk about because you know you’ll cry. Brant took the ride with me to Westchester one of the times we had to hospitalize Thomas. Tommy was working and my mom was watching the girls. Brant was so good like that. It didn’t matter that the hospital was an hour and a half away. I saw the sign for a Nordstrom Rack store on the way home. I just looked at Brant and he was like, “of course we’ll stop Menay, you need a new pair of shoes.”

That’s just one of the many times he was there for us, no questions asked. And I know many of our friends have had the same experience when it came to Brant. The funeral was so, so bittersweet. Saying good bye and at the same time seeing faces you haven’t seen in many years. Reminiscing about the good times, the way we all communicated without cell phones. How we knew where to find each other. The keg parties and of course the wonderful lack of proof that it all happened since not everyone brought a camera and social media did not exist. There are pictures of course. A lot of us have them. I do miss those days, but I wouldn’t want to relive them in today’s world.

It’s odd how you see people you rarely if ever see anymore; unless there is a sad gathering. One of the guys I was friends with years ago was pretty wild back in the day. And we reminisced and laughed at the jokes we had and stealing a bread delivery at 5am on a random Sunday. One of our friends, Mike asked me how long Tommy and I have been married. I answered “30 years”. He then said, and how long were you together before that? Before I could answer Mike called Tommy and I the “OG couple” I found that totally funny.

My kids grew up with Uncle Brant in their lives. He helped us a ton watching the girls when Thomas had an appointment. I didn’t mention that Brant was over 6 feet tall, weighing an easy 250lbs at least, maybe more I’m terrible with estimates. My kids loved him. I have to admit it was really funny to introduce the girls’ boyfriends to Brant when they were at the house. The look on the young man’s face was usually priceless. Brant didn’t need to speak a word, he simply stood tall, behind them.

I hope you’re resting in peace Brant.

My mom is part of the baby boomer generation. When she and graduated high school it was expected that women would get married and/or go to work. My mom wanted to be a nurse. Her guidance counselor in high school advised her that she was not “college material.” At 18 years of age she went to work for NY Telephone in Brooklyn. Like so many other women back in the day.

My mom and dad met and married fairly young as most couples did. After they were married Mom went to school and earned her beautician’s license. She still has it. “Of course I kept it, I worked hard for that license.” Three kids later she never gave up her original goal; to become a nurse. My sister was 2 years old, I was 4 and my brother 7 when mom enrolled in “Richmond Community College” while working full time at JC Penney. She had the support of my dad and my grandparents. My dad learned how to fix my sister an my hair, take us for pictures; cook. When I was about 6-7yrs old I refused to eat hot dogs. Yet I would eat baloney no problem. I remember my dad fixing us hotdogs for dinner and I was like, no I don’t eat hot dogs. My dad asks, so what do you want? A baloney sandwich I answered. But they’re the same thing!! My exasperated father yelled back. Ummm no they weren’t bahaha! So my dad went to the deli and bought me baloney.

My grandmother was home, she didn’t work; grandpa went to work. Even with the help and support of my dad and her parents I know it wasn’t easy on my mom. All classes were in person. A few times my sister and I were brought to class. I remember being so excited to be there!

There was a period of time my sister and I spent Monday to Friday at our grandparents house and went home on weekends so mom could attend school very early during the week. We were still in walking distance of our school. It was definitely different spending that much time with grandma and grandpa. It wasn’t bad, not in the least. We were very close with our grandparents. In the mornings we all had breakfast together, grandpa still worked. We would walk to school and come back to their house after school; do homework. There were times grandma couldn’t help us with our math homework. She knew how to do the math, we were just taught different. She would do the problem her way. And we would get the same answer. Don’t ask me what the difference was.

Off topic but I personally had the same issue when my girls attended school and learned “new math”. The stupid powers that be even offered classes for parents to learn “new math”. I flat out refused and would call their teachers telling them my girls would do math however way they figured it out. Problem solved haha.

It is 1980… mom graduates with her Associates degree in nursing! It paid off!! Her first job was in the Neonatal intensive care unit (NICU). Tiny, tiny babies! And she didn’t stop there. My mom went on to earn her Bachelor’s degree in Nursing and soon after that her Master’s degree in Nursing education. She accomplished her degrees all while working full time with 3 kids and a husband. When mom was going for her masters degree, we were much older. However all classes at the time were in person so she attended evening and night classes. After Mom earned her Masters we thought she was “done.” Nope. On to Nurse Practitioner!

I’m so, so proud of her. Not everyone ignores negative advice given to you as a young person. My mom stayed true to her calling and persevered and worked hard to earn her degrees and many certifications. I get a kick out of her professional signature with every degree and certification trailing after her name. She accomplished what she wasn’t supposed to accomplish. Well done!

When Thomas went to live at his group home I thought my days of micro managing his care would lessen. Backing up a few years: When he lived at the residential school from 16 until turning 21 the psychiatrists, staff and nurses caring for him were amazing. Communication was never an issue, I was consulted with and knew everything to know about the care of my son.

Thomas went from residential school to his group home. I was reminded by the nurse who worked there at that time, that one of his meds had a side effect of kidney damage. I was aware of this side effect and agreed to discontinue the medication. Thomas handled the change well. I was assured by this nurse that I trusted, that this psychiatrist was “one of the good ones.” Of course I sighed with relief. I trusted the nurse’s judgement. I had stopped trusting psychiatrists where I live 24 years ago and only used those in Manhattan.

As special needs parents there are little to no instructions and/or guidance to raising this kid. As a nurse, I educated myself about Thomas’ meds. I did not become crazy about side effects and I knew those meds like the back of my hand. I could give a lecture on the actions, side effects, blood draws, etc…

During a conversation with the new group home nurse who took over from the first one; I was informed that this “good” psychiatrist had been tapering my son off medication that controls aggressive behavior. Medication that he cannot be without.

My girls picked up on the change in Thomas before Tommy and I did. They said he was angry, not happy to see them like he used to. No jokes with them. I was livid that those meds were touched. This was done without written and/or verbal consent of Tommy and I. Thomas’ legal guardians. I called the psych right away. The conversation was odd. I right away told her what she did was wrong, there was no consent…and she recommended we work with another doctor. Wow. Wow. It must be really nice to fuck up, not offer an apology and then pass my son off to someone else.

I emailed and spoke with the heads of the clinic. Multiple times. I did not yell, I did not curse. I intensely, clearly and angrily pointed out that Thomas has legal guardians who are also his parents. There was no written permission to make such an asinine med change. No discussion. Instead of asking the parents the effects on Thomas of a lowered medication dose, she asked the group home staff who said he was “fine.” My son was not fine. No one knows my kid like I do. Was my opinion or expertise requested? No. Was my permission given? No. Was I insanely angry? Yes.

We were assigned to another psych practitioner within the clinic who listened to me and corrected his meds. The correction did not occur overnight. In the meantime we saw behavior from Thomas that we had not experienced in years. Reminding Tommy and I of a time in our life we never thought we would have to relive. Horrible, scary and completely unnecessary.

I put this experience in writing to the appropriate complaint board. I sent the letter certified/return receipt. I know what to do, this is not my first letter writing experience. I’ve taken Thomas out of that psych clinic. I’ve changed his primary physician. In all the years I’ve taken Thomas to specialists, neurologists, psychiatrists, primary physicians; those doctors were of my choice. If they took our insurance, great. If not we found a way to make it work. If they provided poor care we left.

My son has never been treated as if he were someone without a family, someone who has no one overseeing his care. I’m not angry with the group home agency or staff. They are not the ones with the medical license. This post is not in any way a warning about admitting a loved one to a living situation outside your own home such as a group home setting. We have no regrets in our decision.

What I do regret is not personally choosing his psychiatrist. Lesson learned. Thomas is currently under the care of a respected psychiatrist in Manhattan of my choice. She does not take insurance. Meh, not the end of the world. His meds are stable and he’s doing much better. There is room for improvement and more specialists to consult with. I am the person who chooses the specialist and I am who the reports go to.

Micro managing continues.

I grew up in a middle class family; mom, dad, 3 kids and usually 2 dogs, at one time 3 dogs. I can’t say we wanted for or were denied anything as far as material possessions. Big gifts were for Christmas or birthdays. We did the “OG” back to school clothes shopping. We went to public school so no uniforms. New shoes for school. Sneakers usually for gym. At that time, like grammar school up to junior high years; name brands weren’t that big. Until the designer jeans trend exploded all over.

By the time I arrived at high school all I wanted were Levi’s jeans and my dad’s flannel shirt worn over the pre-requisite heavy metal concert t shirt. Daddy was so good natured about it too. He never complained, even when he rarely saw a particular flannel shirt again unless my sister or I were wearing it. At first he would say, hey put my shirt back, you’ll get bumps all in the front of it. Haha.

I was a “rocker” in high school. Went to a lot of heavy metal concerts. My first concert was Iron Maiden at the Garden. I cut school that day with a few friends to buy tickets. So many of my friends were going and we were taking the ferry then the subway. We all needed a ride to the ferry. My dad drove this work van. Omg it was no surprise my dad had this van. He drove all sorts of work trucks and vans. It was carpeted inside! Bahaha, no bed thank goodness that really would have been ewwww. My dad offered to bring us all to the ferry terminal. There was I think about 8 of us? We looked like a clown car when my dad dropped us off. People stopped and got out of their cars to count us getting out of the van. My dad was laughing so hard.

We saw local bands at clubs either here on the Island or in a larger well known club in Brooklyn. It depended on who was playing and who was driving. There was always a mosh pit going on. I avoided the mosh pit like the plaque; except for the one Slayer show in Brooklyn when the band came out and I was literally in the middle of a mosh. It was horrible I didn’t know where to go. I was literally thrown and landed up in the men’s room somehow. It was actually fine I just wanted out of the pit. I watched Tommy play drums at various studios for band rehearsal. And watched him play out. It was great. I was so proud of him.

We had really great times. I am glad there wasn’t social media back in the day. All of us had amazing memories and there were a few who always had a camera. It was fun to drop off the film and wait to see which pictures came out good, bad or omg! The teasing was fierce, mistakes were made and lessons learned. I realize how fortunate I was to have a great boyfriend, amazingly close friends and parents who welcomed everyone we brought home. Good times 😊.

Thirty years ago while honeymooning in Hawaii, Tommy and I were laying on the beach talking about how beautiful Maui was, the beach was amazing, we couldn’t believe we were there and married.

I moved in with Tommy about 6 months before we were married. I never pretended we were married during that time. Then finally the day arrived. To recite vows in church; witnessed by family and friends; changes you. It did me. I felt so connected to Tommy, legally connected in a way, but not in a bad/restricted manner. More like public/declaration. A marriage license is so much more than a piece of paper.

Getting back to Maui; I was just pregnant with Thomas and we wondered what he would be like. Of course we didn’t know he was a boy or any other details at the time. We imagined returning to Hawaii for our 20th anniversary and “the baby” would be 19. Would we be able to, would there be other children, after this one? We did not plan on 4. More like 3. However as much as one likes to believe they are in control, we are not. We make choices but that doesn’t mean we make the best choices or the outcome of those choices is what you expect.

Tommy and I had to make choices for Thomas that would affect the whole family. I was talking to someone today about when Tommy and I met Thomas’ first psychiatrist in Manhattan. Thomas was almost 6 years old. The doctor gave us his diagnosis and his recommended medications. We did not take this lightly. The doctor told us to discuss the situation and call him in a week or so with our decision. Then he said, “I hope you don’t think if you don’t do anything, if you don’t put Thomas on medication that you haven’t made a choice. You have made the choice to do nothing.” That resonated with me then and still does.

I don’t spend much time ruminating over decisions Tommy and I have made. There’s no point. I do wish we were never put in the situations we experienced. “We did the best we could with what we knew. When we knew more, we did better” as per Maya Angelou.

About 10 years ago I knew nothing of the world of enhancing facial features. It began with me first seeing an ad for semi permanent tattooing; having my eyebrows micro shaded. As a victim of the thin eyebrow phase so many years ago, I did not like my brows at all. It seemed I could do nothing to grow them back. I never had thick brows to begin with, and I have somewhat of a fair complexion when not tan. My brows bothered no one but me. So I took the plunge and made the appointment to have my eyebrows micro bladed. The artist tattoos strokes of ink to give a more natural appearance. Due to the artist who started my work then quit without telling me; I ended up with micro shading (finished by a different artist) which is a more solid eyebrow appearance. They came out nice so all was well.

This past Tuesday I had my brows micro shaded again since the color had faded. Yes it hurt. More than my tattoos and from what I remember more than the first time. The artist began with a numbing cream but after a few passes of depositing color and filling in various areas; it hurt like hell. It’s not even as deep as a regular tattoo. Anyway the procedure took about 2 hours and I was more than done. I have to mention when the procedure is done the brows are very dark and much thicker than you expect. I looked like the baby with one dark eyebrow from an old episode of the Simpsons. Samantha was very supportive by giggling every time she looked at me. Feeling the love.

I texted Tommy at work to warn him before he came home but wouldn’t send a picture. I did send a pic of the cartoon baby with one eyebrow. He came home and hugged me. I have a great husband. Yes he did laugh for about 2 days but I can take it from him.

I return to work tomorrow. We’ve been off from work since December 24 for the Christmas break. Thank goodness the brows have lightened up a little and the swelling is gone which only enhanced the thick appearance. I texted pics to my middle daughter and Meg the nurse I work with. Both will give honest feedback. They both gave the green light. Whew! I feared a new work nick name.

My school had its yearly Holiday Fair this month. The fair is 2 days long; the first day other sites of my school attend. We have many “off sites” scattered across the borough. It’s so nice to see the students who have transferred out of “the main” and of course the staff! Paras and teachers we used to see every day before they transferred.

Three moms arrived and were waiting for staff to accompany them to the fair on the 2nd floor. I happened to be walking by and offered to accompany them. The moms were all happy to be there, laughing and talking like close friends, saying hi to students. One mom explained to me their sons went to school together. They all knew each other for years. Suddenly I felt a wave of jealousy. I know. Sounds odd. Thomas always was bussed to school; he had an IEP and he was entitled to bus service to and from school. He didn’t attend our zoned neighborhood school. Back in the day only certain schools had special ed programs. I was not a PTA mom. If you know me in real life you totally understand.

When Thomas was young my amazing circle of support moms lived in Wisconsin, California, Long Island, Ohio, and Canada. We chatted online every night without fail. It was amazing. We were all very real with each other, supportive and willing to share any experience that could help someone else. What I witnessed in the elevator was in person camaraderie and support. And even though I felt the jealous pang, I’m also grateful for the support I found when it was almost easier to seek out help online rather than face to face.

When Thomas attended The Hungerford School here, I used to talk to the parent coordinator at that time. I wanted to be involved with the school in some way because I was so happy Thomas was there. As I mentioned I’m so not a PTA mom. I managed to volunteer at the holiday fair one year and it was awesome. There was so much student made merchandise. I loved it. And no student was turned away if they didn’t have enough money. You just accepted what they had and allowed them to buy an ornament or whatever they had their eye on. So, so sweet.

If you had told me then I would be working there now… no way would I have believed you.

No one makes me laugh like my husband. It’s one of my most favorite things about him. Tommy has always been funny, even when we met way back in the day. He doesn’t put anyone down to make himself look better or funnier. Tommy just comes up with comebacks or observations that are very unique and totally appropriate to the occasion and extremely funny IMO. While raising our kids we laughed at situations that were only funny to us. Some experiences and circumstances just called for humor or we would not have gotten through.

When we were in high school Tommy was known for drawing comic strips of everyone we hung out with. They were hysterical. My husband was no artist but somehow he captured each one of us.

My kids have their father’s gift of humor. I can’t tell you how many times as an adult my Lelly had me doubled over laughing. I don’t have particular examples as it’s usually something spontaneous between the two of us. I’ve had tears in my eyes when all my kids are together and a situation comes us that I can’t stop laughing about. My son in law Sam is usually one to unexpectedly burst out laughing. I love when that happens.

We used to have phrases for when things were really bad; no room for humor. Tommy would just pop out with, “You want a puppy? I’ll get you a puppy.”Like that would solve the problem haha. I would at least break a smile and things would lighten up a little. I don’t think I can live without Tommy making me laugh. We have a ton of inside jokes even with our kids. And times I burst out laughing when it was totally inappropriate, but haven’t we all?