Happy Mothers Day; to all the mothers. Every single one. I’ve always been appreciated as a mother. My husband and children have never not made me feel special on Mother’s Day and I’m so thankful for Tommy, Thomas, Alyssa, Daniella and Samantha. I used everyone’s “real” name even though I mostly call my kids by whatever nicknames they’ve acquired during their childhood.

I’ve had the honor of knowing mothers of every different circumstance. My own beautiful mom who raised me and taught me everything a mom teaches their daughter. My very spirited mother in law who didn’t know she was teaching me so many things. How to make meatballs like her, that I should only buy “good” shoes, to name just a couple of important lessons.

Moms of all “typical” children, moms of special needs children, moms with many children and moms of “one and done” children. Working moms, stay at home moms, single moms, married moms…It doesn’t matter how one becomes a mom. Natural pregnancy, invitro, adoption; I can’t think of all the methods that we become mothers, in the end all that matters is that we’re a mom.

I’ve learned so much from so many moms. Major, confidential in depth conversations in the school yard waiting for the kids to be dismissed from grammar school. I made the most awesome, understanding friends in that school yard. Neighbors/moms that became more than someone you waved hi to; a true friendship grew, so cool. A huge shout out to my moms of special needs children. Whether we met in person or over the internet, the support, encouragement and camaraderie is never anything but genuine. No one judges, and that common thread we share doesn’t break.

My best friend moms. The good and bad times we’ve experienced over God knows how many years. Times we’ve held each other up when we didn’t have the strength to hold ourselves up. The times we knew what had to be done, and didn’t need someone reminding us; so we stay quiet being silently supportive. Words fail me.

All the moms in my life, thank you. Happy Mothers Day!

Lately I’ve been thinking about raising my children; well still raising, Samantha is 17. I think about Thomas of course and the inexcusable and inappropriate treatment I received from the many professionals and experts I sought help from for Thomas. I get angry. Even after all these years. There are some physicians who are still in practice and I truly wonder how they still have a license to practice. Not because of how they either misdiagnosed or did not diagnose my child, but because of the many other children they gave poor medical care to either before they saw my child or after. Parents talk.

Raising Alyssa and Lelly in retrospect was very nice. They were very typical girls. They met all their milestones ridiculously on time or early. Lelly was my early walker at 11 months and then she began to run! She’s been on the move ever since. Alyssa as a child was very sweet and thoughtful. As an adult her personality is the same. Most importantly my Lelly and Alyssa allowed me to know what it was like to simply watch them *be* so typical and I loved to be part of their typical lives, I still love being with them and watching what comes next.

Many parent of special needs children say they wouldn’t change a thing. Whether it be that they wouldn’t change their child or they wouldn’t change their lives with their child. There are many things I would change. I won’t make a list. I wouldn’t change the way we raised Thomas, not knowing what was wrong made Tommy and I treat Thomas as more typical than he was. We weren’t given a correct diagnosis until he was 12 years old.

I would change that I stayed with his pediatrician much longer than I should have. It was only after we left the practice did I fully realize the depth of her belief that there was nothing seriously wrong going on with Thomas. At first, she refused to give me a copy of his chart; yes that is illegal. It was t until I wrote a certified letter giving her a date that I would come to get his chart that suddenly the chart was made available. And then I read parts of her notes. Notes about me. In my son’s chart. Not good. We had already established care for all our children with another pediatrician. One who we adored. She knew I was having trouble getting a copy of Thomas’ chart and by the time I got a hold of it I refused to give it to the new pediatrician. She had his immunization records and copies of reports from multiple specialists. That was fine.

I could go on… ok one more instance. When Thomas was 6, I requested a referral to a psychiatrist. She said she didn’t have one. So I searched and searched online until I found a specialist child psychiatrist in Manhattan. Of course he did not take insurance but who cared at that point. This doctor requested all the reports from other specialists/physicians as well as reports and the pictures of MRI’s and EEG’s that were completed. I had kept a diary/ log of Thomas’ behavior that he wanted to see. When the psychiatrist diagnosed Thomas along with appropriate medication to treat, Tommy and I agreed to follow his recommendations. I called the pediatrician and filled her in on what the psychiatrist said. Well it was a miracle… because she suddenly had a psych referral. I was speechless and said, I thought you didn’t know anyone? No thank you we like this doctor.

Life was very hectic back in the day. The thought of trying to find another pediatrician was overwhelming even though I was treated and viewed so poorly. When I did leave that practice it was such a feeling of relief. I only wished I made that decision sooner.

I can’t change Thomas, nor would I want to. I learned so much from being Thomas’ mom and met people I never would have crossed paths with otherwise. If I could go back and change him, my life would not be as it is now. I have a good life. There were many dark seasons and storms but God placed particular people in our path and they held lanterns to light the way and/or simply walked beside us lending strength.

When we requested to have Thomas be transferred to District 75 (special education district) and attend The Hungerford School at age 12, it was wonderful. No one ever recommended District 75. At every IEP meeting it was recommended that Thomas stay in District 31 which is for typical children and attend a special education class of 12 students/one teacher and one paraprofessional. That was so very wrong and completely inappropriate for his educational needs. But…no one told us about District 75, ever. And how wonderful it would be for Thomas.

So there’s a part of mind and Thomas’ story.

When I’m at a get together and I’m asked, “What’s going on?” I love, love to say “nothing,” because to me that means there’s no drama in my life. Nothing that is draining me and demanding my attention other doing what I really enjoy and want to give my full attention to. This time last year there was drama in my personal life; I never blogged about it. And only to my close small circle would I talk about it.

The drama and angst centered around one of my children. Most can relate to that pain and uncertainty. It did not involve Thomas, for once he was the quiet stable one. I am an open book when it comes to our life with Thomas. I don’t know if that is unfair to him or not. The majority of what I do write and talk about is the manner in which I was treated as Thomas’ mother. So many of our experiences with raising him never should have occurred, and to be perfectly honest I have some degree of PTSD as a result of how I was treated by the multiple physicians and specialists I took him to in our quest for answers. My experience with Thomas was so atypical, I needed to express what happened in the hope that no one should walk in those footsteps again.

I’m always amazed at what a difference a year makes. This time last year, life was full of uncertainty. Today circumstances are in a positive direction and there are many days that life is kind of quiet or simply mundane. And that is totally fine.

I’m off from work this week as NYC public schools observe Passover. I don’t have many plans other than catching up with appointments. One physician I see is in Manhattan and it’s easier to get there in the morning rather than after work. So samantha and I will have a big city adventure!

Happy Passover to those that celebrate and thank you to everyone who reads my posts ❤️

When Tommy and I were first married I worked full time at one of the local hospitals. 12 hour shifts. Looks good on paper but not really all it’s cracked up to be. Some people love that schedule and thrive on it. However working as a nurse in the hospital, you also had to work every other weekend and major holidays. My first year I worked day shift on Christmas Day. It was horrible I won’t lie. I’ve also worked overnight 12 hours on Christmas Eve. Not so great either. It didn’t take long for me to discover I did not like working in the hospital and I quickly experienced burnout from the heavy unit I worked on.

After Thomas was born I returned to work at the hospital. 3-11pm shift which I did like because my patients were awake a lot of the time and I was able to meet the families and talk with them. I enjoyed that part of the of that shift. Plus I enjoyed the evening people I worked with. Much less drama than day shift. When Thomas was about 6 months old the shit hit the fan with tip of the iceberg of what was the first of his various diagnosis’. Tommy and I decided I would quit the hospital and stay home full time. It was difficult for me to spend so many hours taking care of critically ill patients and then come home and be a mom and advocate and keep up with his doctors and physical/speech therapy visits.

I really didn’t know if I wanted to continue to be a nurse after I left the hospital. I mean Thomas kept me busy enough at the time. Later, Alyssa and Lelly were born and I took a part a part time job as a nurse in a doctor’s office. It was good for me to get out but the job had its own stressors. I left there after about 3 years and again questioned whether nursing was really for me.

When one is attending nursing school little is taught about other career avenues besides working in a hospital. It’s really a disservice. No one mentions home care, school nursing, working with an agency, dialysis, etc. I discovered working for an agency and doing chart abstraction by answering an ad on Indeed, the job search site. They hired and trained me and bam there I was working full time 9-5/5 days a week as a nurse! Thomas was settled in his residential school and Samantha was in upper grade school; I was off weekends and holidays. I couldn’t ask for better. Then…the chart work stopped and I was laid off. No bueno.

I searched Indeed almost daily and stumbled upon a posting for Department of Ed, school nurse for special education/medically fragile students; District 75. Where Thomas was classified as. I knew what I was applying for. 2 days later I had an interview and was hired. I love my job. After all the time spent wondering if nursing was really for me I found my niche! Never did I think being a District 75 nurse was where I would find “me”. Never did I imagine I would so strongly identify as a nurse and then go on to earn my bachelor’s degree for a profession I once truly believed I did not belong.

It’s not easy staying home and raising children no matter what the circumstances. I spent years at doctors’ offices, IEP meetings, specialists’ offices (that did not take insurance), IQ evaluations. You name it. All while trying to ensure my typical children were being raised as they should be with a present mother.

My identity as Thomas, Alyssa, Lelly and Samantha’s mom will never change. It’s my most important identity. My identity as a registered nurse is personal as well as public. It’s something that I worked hard to earn and rediscover after years of lying dormant due to the course my life took. With my kids I’m one proud mama. With myself I’m simply proud.

The past couple of weeks my co-worker Meg and I have been training nurses new to the Dept of Education. They have different nursing experiences and backgrounds but school nursing (District 75 in NYC) for special education and medically fragile students is a new experience. They’re both very nice women and want to learn; so when they are training with us the time spent is pleasant.

While chatting one day, I mentioned that I have 4 children, the oldest of which is special needs. One of the nurses says that her son is also special needs and attends a D75 school and is doing very well. I was so happy to hear that. She asked me about my experience with Thomas when he was growing up. I tried to give a summary but those that know my story about raising Thomas know that there is no “short” version. I got up to the point where at age 11, Thomas had finished spending time at a residential school in Yonkers, NY. We were ready and eager to have him home but we didn’t know what school to have him attend here. So my son commuted every day on the DOE’s dime and school bus to Yonkers NY, but now as a day student; for a year. No one ever even mentioned a District 75 school here on Staten Island. District 75 was a big freaking secret. It still makes Tommy and I a bit angry when we talk about it.

At this point I paused and both the nurse I was talking to and myself were quiet. She spoke first and said wow, things have really changed since you went through that with Thomas, things today are very different. I was pleasantly surprised when she said that. I only know what I know. She then said, you know Menay, it’s parents like you who went through that experience that paved the way for parents like me so that we don’t have to go through what you did. I stayed quiet because I was afraid I would cry if I spoke. When I did speak I told her about parents I knew that came before me who paved the way for us with Thomas.

I never, ever saw myself as a parent who made life easier for those unintentionally following my footsteps. But I’m so, so glad our experience has made a difference.

Raising four children has not been without challenges. Some experiences were eye opening in a good way and changed my perspective of parenting and other situations knocked us flat on our ass. Before I had children, I had this vision of what life would be like. I would not have kids that were screamers (haha!) and I would be patient all the time because you know they’re just kids….and lest we forget the infamous, “I’m not going to plop my kids in front of the tv.” I could go on, it’s quite amusing. Of course all is mostly wonderful during the newborn/infant stage since they don’t talk back and they usually like the person who feeds them.

As our kids grew and moved through different seasons of maturing there were difficult times where decisions had to be made. For us raising Thomas is where the most gut wrenching decisions began. When he was a young child we chose to have him take medication prescribed by a very trusted specialist. Unfortunately the medications, specialists and therapists were not enough to keep everyone safe and we followed the experts’ recommendation to have Thomas attend a residential school. That was not an easy decision to make and we had to put aside what we as parents wanted and put what was best for Thomas in the forefront.

With Alyssa and Lelly being typical children, raising them was the complete flip side of raising Thomas. They were so neurotypical it’s like they both read a growth and development textbook to know which milestone to meet next. They kept my sanity quite a few times.

In 2006, I gave birth to Samantha. Omg Samantha was amazing to me. I had had 2 losses before her. In the hospital I was tearfully hugging and thanking my doctor (whom I adored) for giving Samantha to me safe and sound. Thomas was 10, Alyssa 8, and Lelly 5. We were officially a family of 6.

I used to worry that I was being judged when I was pregnant with Samantha. I felt as though people were talking behind my back, “Oh look, they can’t handle their oldest kid, but here they go having another!” After a while I got over it and came to the realization that no one else was living my life so there weren’t any opinions that mattered besides mine and Tommy’s.

To this day I try to keep that attitude, especially since we aren’t finished raising our kids, Samantha is 17. Just because she turns 18 this year doesn’t mean we will be “finished”. Nor does that mean people in our lives will agree with or understand decisions Tommy and I make. If I didn’t ask for an opinion, one can keep it to themselves.

This morning I shoveled the light-weight snow we received early this morning, took Samantha for bloodwork, and then went food shopping. I was up early don’t ask why. After we put the groceries away we decided to hit the thrift store. It was nice and not crowded. You really never know what to expect on a Saturday.

I come from a long line of yard sale-ing and thrift shoppers. My grandparents were avid yard sale-ers and collectors. When we were young kids, my grandfather used to get the Saturday paper, gather my sister and I and hit the yard sales advertised where we live. Every now and then he would take us into Manhattan (back when you were allowed to take your car on the ferry). The ferry would dock and we usually drove to a very old and dusty shop downtown. I remember that’s where he bought coins he used to collect. Then we would drive back to the ferry, park the car on the boat and come back. My sister and I loved it.

My parents were also never ones to turn their noses up on a passing yard sale, or interesting things on the side of the road. My dad used to often tell me of the great buys his mother would score at the thrift store, like new, warm jackets and shirts for him. My father’s mother was of Scottish descent and he always referenced that when he talked about his “frugality” and/or cheapness.

My mother and my grandfather (her father) were always finding and bringing home “stuff” people were putting out for the trash. Bicycles, antique trunks, etc…you name it.

I love thrifting; you never know what you’ll find. It’s like a treasure hunt in my eyes. I am a fount of useless designer bag and clothing information. Well useless unless you’re at the thrift store, haha! If I am unsure of the value of something or want to know more about a brand name, google is my bff. Although there have been many times when google is stumped and I use my thrifting judgment. I’ve been very fortunate in sorting out what is not quality and what is an awesome deal.

I’ve had many what my dad used to call a “shopper’s sky”, meaning it was a great thrifting day. And a great day at the thrift could mean I’ve found anything that I consider a score. I try to stick to what I know. Jewelry not so much. I have gotten lucky a couple of times but not often. My aunt Marge knew her jewelry and amassed a crazy collection. I try to not let my obsession with bags get to that point although my husband would beg to differ.

Nobody tells you that when your kids are older such as older teens and young adults that you fall in love with them all over again. You’ve already begun loving them at birth and that love continues through the years that you’re raising them up to be adults. There is a point in time that you realize you totally enjoy being with these children of yours but they are no longer children. That saying “the days are long but the years are short” could not be more true. I remember when everyone was younger I felt as though they would be young forever. I never wished they were older, or wanted to change my kids in any way. It’s just that time seemed to stand still so often during those years.

No one tells you how it will feel when your special needs son says, “I have a house, your house is not mine, it’s yours, my house is my home.” I was impressed that Thomas made perfect sense; And yes it still hurt my heart.

No one tells you how happy and excited you are when your middle child secures and signs a lease for her own apartment in Manhattan. No one tells you, you will be ugly crying as you help her unpack knowing this is a great life event, but so sad that she’s leaving your house.

It’s similar to the feeling you experience when your newly married daughter and son in law come for dinner and then leave together. It’s like oh….she doesn’t live here anymore.

I’m so very happy and proud of my kids. I’m so proud of their accomplishments at young ages and their confidence to do what they have their hearts set on. Not everyone has the experience of watching their children spread their wings and literally soar high. They are truly my greatest accomplishments.

Do you make New Year’s resolutions? I don’t. I used to years ago, but then noticed a predictable pattern of giving up or never even starting to make progress towards said resolutions. I always wish for a better new year than the one we are saying farewell to. I remember saying I would quit smoking or lose weight as frequent resolutions. You know, I did quit smoking and I did lose weight but I accomplished those goals on a totally different timeline than New Year’s resolutions. Tommy bribed me with an expensive designer bag to quit smoking about 7 years ago. He dangled that carrot out there and I took the bait. Tommy made good on his offer and I haven’t touched a cigarette since. Even though I still miss it, damn nicotine makes everything alright!

As a family Tommy and I had a difficult past year. In 2023 we made decisions a parent shouldn’t have to make and drove more miles across the 5 boroughs than we both ever thought we would. It was also noted that we believe we’ve driven over almost every bridge connecting the 5 boroughs and Long Island during our lives while raising our children. In 2023 I drove over the RFK/formerly known as the Triborough bridge. That was a new crossing for me.

I truly wish a happy and healthy and prosperous new year to all with very few road bumps as possible. And if you do hit a snag or two I hope you have as many supportive people as possible in your corner. Hug your children and let them know they mean the world to you. That they don’t need an invitation to come over, do laundry and/or and have dinner. Phone calls are always welcome.

I want more adventures with my husband this year. This is not a resolution; merely a statement of what I would like to see happen with us. I know Tommy wouldn’t disagree. I don’t know what kind of adventures at this moment. And it doesn’t necessarily mean travel. Where we live you can have an adventure after crossing a bridge or taking a ferry ride.

Happy New Year my friends!

Christmas Eve this year landed on a Sunday. Sunday is Thomas’ day to come to our house and have dinner; leaving immediately after he takes his meds at 6 pm. No budging on the schedule. This year we were invited to celebrate Christmas Eve with my husband’s family, to arrive there around 3 in the afternoon. We were not planning to bring Thomas due to his schedule and the fact that we were celebrating Christmas Day with my family and Thomas the following day.

I called the group home to speak with Thomas and tell him we would see him on Christmas Day. He became very upset which in turn made me upset. I couldn’t take my son being upset and just blurted out that I would pick him up, thinking, “ok I’ll just stay with him until 6, bring him back and then head over to Tommy’s family.” This plan didn’t go over very well with Lelly and my husband. Lelly became upset because she wanted to spend time with and have dinner with Tommy and I and not watch me be distracted because I was busy with Thomas. She wanted my full attention. A simple enough request.

Tommy took control of the situation, called the group home and explained that we were going out later, could we spend the afternoon with Thomas and would a staff member be there earlier than usual to meet Thomas back at the house. Things were settled.

I never realized that I wasn’t giving everyone my full attention. Not that that’s even possible. Yes we all multitask and split our attention but in the end someone ends up unhappy because they aren’t feeling recognized; that they need your attention as well. I not so proudly admit that I don’t give Alyssa and Lelly the attention Thomas gets. In my head I rationalize that with them being neurotypical; they don’t need me as much as Thomas does. I couldn’t be more so very wrong. Alyssa and Lelly need me more sometimes and it’s my responsibility to meet their needs. Even if it means Thomas’ needs are set aside temporarily.

I know all my kids know I love them. A ton. If I didn’t have Alyssa and Lelly to keep me grounded and appreciate raising typical children when things were so hard raising Thomas; I don’t know what I would have done or how I would have turned out as a person. They both influenced my growing as a parent. And for that I can’t thank them enough.