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.

Thanksgiving and Now The Tree

We had a very nice thanksgiving, all our kids were here plus my mom and her crew. I’d say we were about 13-14 in all. I gave an estimate just now because I miscounted when I set the table; my nephew had to sit at the kitchen island/peninsula. He didn’t complain, William never complains, he’s so sweet. I’m so very thankful for my kids. I’m thankful for their health and that we are all able to be together especially with the holidays upon us. I think of events from this past year and there are definitely seasons that were difficult to go through. I’m grateful for a God who sees us through. My life isn’t all perfect and peaches and cream but I’m not in a pit, I’m not depressed, I have a great family and house and I’m so so thankful for all the Lord has put before me. Most of all the people who are in my life or put intentionally in my path by Him.

This past summer I began working with a nurse that it happens we were hired at the same time and went through our training at the same time. We didn’t know each other that well at that time, only that we lived in the same borough. Fast forward 5 years and we’re working together. She’s great I tell you. Very organized and a total team player. If her workload is easier than mine one day; she’ll come help me with mine and vice versa; I help her. We ask each other’s professional opinions and respect one another. And best of all we laugh! We are so very busy at our school but there’s always time to take a moment and laugh. Find the humor somewhere. I’m so, so glad we work together.

So today is the day to put the tree up. Well, actually I put it up last night but that’s all there is. No decorations on the tree. I have to get the umph to get myself up in the attic and bring the boxes down. It’s not a ton of work but just enough you know? Plus I had to rearrange papers and diplomas and certification papers of both mine and Lelly’s. She didn’t take her diploma when she moved out for whatever reason. I also had some thrift finds I meant to give away to the girls that somehow ended up together…. I find Lenox like crazy at the thrift, it’s funny. I’ve always admired Lenox pieces but never purchased any retail, and given all I’ve thrifted I never will pay retail haha. The other day I found a Goebel/Hummel set from 1959 in pristine condition. It’s a figurine of Mary on a donkey holding baby Jesus with Joseph (separate figurine) walking with them. The name of the set is “escape from Egypt”. I just love it. You never know what you’ll find at the thrift I tell you.

So I’m off to get the decorations before Thomas arrives and starts to crack the whip. He would make a great supervisor he’s so intent on tasks being completed; and me putting up the tree is one such task.

Same Parents Same Environment

As the mother of 4 you would think I would know better. That even though your children have the same parents and are brought up in the same environment with similar parenting; that they will not be the same; they will all be different. Thomas being special needs is his own category, however we enforced the same rules for him as we did for the girls. That doesn’t mean that our style of parenting worked for him, it didn’t but we didn’t know what he needed at the time.

In retrospect our older girls were so, so typical. Like they met each and every milestone exactly when they were supposed to. No matter what age or stage of their growth and development. Even into young adulthood. I won’t say we had it particularly easy with Lelly and Alyssa because even neurotypical children have their challenges. For instance Alyssa sailed through junior high and had a great, fun experience, I was very happy for her because my junior high years were hell. So I couldn’t help but expect the same for Lelly. Wrong. My girl was bullied, not cool. And to make matters even more weird she was bullied by a girl she’d known and had been friendly with since pre-k! Freaking weirdo bully. She mysteriously stopped when I called their house and left a message to speak to her mother who I also knew since the girls were in pre-k. Shocker.

Alyssa is my very sweet, easy going but not a pushover oldest girl. She has so many oldest child traits and I love that about her. After watching Thomas meet his milestones late or not at all; It was refreshing to watch Alyssa grow as if she read the book on what she was supposed to do next. I thanked God for her every day back then. I was so grateful she was so typical.

Lelly is my middle girl and has been on the run since she was a toddler. My earliest walker at 11 months and quickly turned into my earliest runner as well as the child to climb out of the crib earliest at 11 months old. I cried when she was out of the crib because she was so difficult to contain. My Lelly. She was a riot and quick to make you laugh. She still makes me laugh like no one else, except my husband. She is also wonderfully typical but with her own Lelly flair. And that’s ok. She graduated high school early, began college early and graduated college early. I would expect nothing less from my “runner”. She landed a great job out of college and before I knew it we were helping her move into her own apartment in Manhattan. I never thought I would be as sad as I was when Lelly moved out. But all it’s well now and we’ve adjusted.

Our youngest daughter, Sam… is giving us a run for our money. She’s also a typical child meeting every milestone early or on time. She was my baby after 2 losses. I totally enjoyed her babyhood, I also had a helper (Alyssa) who was in love with her little sister. Sam growing up however has been quick to display to us what it is like be a person of extremes. Extremely independent, extremely outspoken as well as extreme in acting her age. My older girls did at different points in their lives express to their father and I how little we know about life when they were teens. Sam takes it to the nth degree. There are times I wonder how I made it this far being so very clueless about life in general. Sam is just so very different than her siblings. And that’s ok, it really is. She does talk to me, like really talks to me, about her life, how she sees the world, what’s really going on with her friends. Important things. I appreciate her for that. I could use just a little less of the extremes.

Stages and Life So Far

I was a stay at home mom for the majority of my kids’ lives. I worked part time here and there but for the most part I was a full time stay at home mom. I don’t regret staying home. I won’t say it was fun per say; but I was able to be there for everyone in a way that worked for our family at that time in our lives. I was able to go to all the school plays, classroom events and went on a few class trips. I was never a PTA mom; not that there’s anything wrong with that, it’s just not me. I was also able to attend Thomas’ many IEP meetings and all the evaluations I could be there for. The main reason I was a stay at home mom was because of Thomas. We didn’t have anyone to watch him or be there for when he got off the bus from school. My mom helped us out when I did work part time but I know in those days Thomas could take a toll on even the most patient person out there. We used to say he could make Mother Teresa curse, haha. But seriously he could’ve.

I began working full time when Samantha was around 9 years old. I loved it. Sam is very independent and I didn’t have to worry about her. Plus my older girls were around when Sam came home from school and Thomas was in residential school so all the stars were aligned for my venture to the working world. I was surprised at how much I enjoyed working. It took some getting used to not having my house as clean as it was when I was home all the time, or dinner always ready at 5:00. But we adjusted and the girls helped out and we made it work.

So there was the stay at home stage, return to work stage, watch our oldest girl get married and move out stage then my most difficult stage: watch Lelly move out after graduating college stage. When my older girls became young adults/older teens I really enjoyed them. I felt like I spent so much time and effort into raising them; to be able to enjoy them was like the icing on the cake. When Alyssa and Sam became engaged it was great! We watched them plan and fund their own wedding while they both were working full time in the fields they went to college for. Two wonderful, young (22 and 23 years old), very smart adults making their way in the world. I was never so proud. It was an adjustment when Alyssa went to live with Sam but we had a whole wedding lead up to that moment. And it was inevitable.

Then there’s my latest stage; my Lelly stage. My wonderful, waits for no one girl graduated high school early to begin college early and took so many credits per semester she even graduated college earlier than she was supposed to. She then landed a great job and before I knew it was moving out with a roommate to the upper east side of Manhattan. A bit of a whirlwind. Don’t get me wrong I’m happy for my girl. I’m so so proud of her and all she’s accomplished so far. I just thought I’d have more time enjoying living and being with her. My Lelly makes me laugh like no one else can; except her father. Having her move out so early was very hard. To have my girls so ready for adult situations at such young ages… I did something right. They are both successful young women with fully independent lives. Isn’t this what’s supposed to happen? No one prepares you for this stage, them leaving after you’re finally sitting back and enjoying them when they reach adulthood. Everyone says enjoy them when they’re little. Uh no. Little kids are hard man. Raising them is hard. Enjoy them when *you* enjoy them. And for me that time is now.

Watching Thomas Grow

Ever since Thomas went to live in the group home I’ve noticed a significant growth in the way he communicates and says things. The first thing I noticed was a year or so bago when Thomas told me he “really enjoyed dinner”. The word “enjoy” was new vocabulary for him. In the past he would simply tell me he liked dinner or that it was good. But to use the word “enjoy” was a new concept and I was proud of him.

Today when I picked him up, Thomas told me he thinks about me, that he thinks about “Daddy, Alyssa, Lelly, and Samantha.” “I think about all of you during the week.” I was super impressed with that whole expressed thought process. He is still growing and learning and I hope it never stops. Thomas’ IQ is one that classifies him as mentally retarded. Those words still sting even to this day. So to see his progression is amazing to me. You never know how far someone can go if you don’t place limits on them.

We’ve never placed limits on Thomas. We had no idea he even had brain damage until he was 12 years old. Until then we treated him as much like a “regular” kid as we could even though we knew he had something very wrong going on. It was a very frustrating 12 years before we we referred to a renowned neurologist way uptown at Columbia Presbyterian. Dr. Arnold Gold. He gave our son such a thorough neurological exam we’d never seen before. I had taken Thomas to different neurologists and many specialists before this. But there wasn’t anyone who could compare to Dr. Gold. He took a complete history from me and I remembered everything back then. Every milestone as an infant, every doctor we had ever seen, every diagnosis, every medication Thomas had trialed and what he was currently taking. I felt like God had prepared me for this visit. Dr. Gold then went over every test result, every MRI report that we gave him; and then he laid the heavy diagnosis of brain damage. I remember Tommy and I both felt as though someone had punched us in the gut. It took a while for us to come to terms with that diagnosis. It did however make sense and we were finally able to put a name to what was wrong. Even though we had a definitive diagnosis it didn’t mean Thomas had changed, he was still Thomas and we still had the same challenges as before our visit with Dr. Gold. The only thing that changed was the label written down officially on paper.

After watching Thomas grow these past couple of years I think of him as developmentally delayed, still; not so much developmentally disabled since there’s still things he can learn and talk about that he didn’t have the opportunity to do during the proper/scheduled time when he was supposed to do those things, aka “milestones.” He’s more affectionate with me now than he’s ever been. After I picked him up from the group home we stopped at CVS. As we left the store Thomas suddenly grabbed me, and put his arm around my neck to pull me closer and give me a kiss on the cheek. It was incredibly sweet and impulsive. I loved it. I’m looking forward to seeing Thomas grow some more.

Appointments

I have a doctor’s appointment today; in Manhattan. It’s a run of the mill yearly appointment, not with a specialist or anything dire. And with today being a Jewish Holiday I’m off from work so it all works out well. I’m finding the older I get the less patience I have for most physicians who practice where I live. Specifically those who are supposed to specialize in woman’s health. When I was younger and having my children I used midwives for 3 out of 4 births. I received excellent care. I then had 2 losses and when I became pregnant with Samantha I received care from a male obstetrician who treated me like glass. But a few years later he passed away.

I then sought care from a very popular physician’s assistant (PA) who practiced under a very popular male OB/GYN here where I live. The PA turned out to be a flake who never returned phone calls and the popular doctor blew me off with concerns and questions I had about women’s health. Then, when I tried to make an appointment with another practice I was told I had to wait 3 months because I was a “new patient.” I felt like I was running in circles. How was this normal or acceptable?

Thankfully I was recommended to this wonderful woman run practice with an incredible reputation. I was sold! The only thing is that they are in Manhattan. Fine, whatever. I’ll travel the small distance by public transportation to receive “good” care. Well it is so so worth it. The woman physician I was recommended to answered every question I had and explained away all my concerns. I didn’t feel like I was being high maintenance or asking questions I was supposed to know the answers to. I’m a nurse and I like to think I’m reasonably smart, but I’m not an expert in all things related to health.

Why am I taking time to travel; however small the distance to another borough for “routine” health care? I’m thankful I don’t mind going to Manhattan, truth be told I enjoy going to the city. But… why do I have to go just to receive basic routine healthcare and visit practitioners that treat me appropriately, return calls, answer questions, etc…. I have one physician practice, my general practitioner who is 15 minutes from where I live. They are wonderful for general care. I see a Nurse Practitioner who doesn’t rush me and always asks if there is anything else before I leave. Wonderful practice. Well you can’t have everything . I’m off to the east Village !

A Different Normal

Let me just preface this by saying I don’t miss the days when my kids were all younger than 10 years old. Life was hard yo! Thomas was off the hook and the girls were; well… girls. No one was “bad” or made me sad or regret that I had them. It’s just that I don’t think people will admit that raising kids to be responsible adults is not an easy task. Throw a special needs one in the midst and boom! A really different kind of family dynamic exists. Especially when that social needs child isn’t properly diagnosed until they are almost 12 years old and you feel like you’ve been floundering in the past.

Anyway…it’s a new normal here in my house. Thomas lives at his group home and has a life there, Alyssa and Sam are living their best life together and Lelly recently moved out to live in Manhattan. No one was “kicked out.” Alyssa and Lelly each left home on their own accord with their own individual plans for their lives. I miss them though. With Alyssa there wasn’t any chance of her staying in our house; she was getting married! But Lelly, ah Lelly did things her way just as she’s been doing all her life. She graduated high school early, graduated college early, landed a great job and quickly found a roommate and nice apartment. It all went so fast but I wouldn’t expect any less from her.

Dinner these days are usually just Tommy and I. Samantha has been at volleyball practice everyday after school so she eats dinner when she comes home later. After she eats she usually goes up to her room and we don’t see her for the rest of the evening, pretty typical teen behavior. And that’s ok. Work has been kicking my ass lately so I haven’t been the most talkative person on the planet.

I seriously never thought of my life the way it is now. People would say to us to enjoy the kids when they’re young…they grow up fast…you’ll miss these days…Yeah, yeah. We did enjoy them, they did certainly grow up fast but I don’t miss those days. I like my quiet house, sometimes it’s too quiet but I’ll live. I like spending time with Tommy. He still makes me laugh the way he did when we were younger. He’s very quick witted and he gets me. This weekend Samantha is away and Tommy took off on his motorcycle, I already did the grocery shopping and hit the thrift store. I should vacuum bit sitting here is more enjoyable.

The Way It’s Supposed To Be?

We moved our Lelly out to her own apartment in Manhattan this morning. She was the smallest of all my 4 babies weighing in at around 7.5 pounds. We used to say she was small like a bird and my sister nicknamed her Lelly Bird. Actually her real name is Daniella but 5 year old Thomas couldn’t say Daniella; it came out Dallella and somehow morphed into Lelly and that is what stuck. We still call her Lelly although when she’s around her friends I try to call her Daniella. She’s officially a renter with her own signature on a lease. Very grown up for 21 years old; in my opinion anyway. Just as grown up as Alyssa and Sam getting engaged/married and then paying their own way for it all at 22 and 23 years old.

I’m crying today at the drop of a hat over Lelly moving out. This morning Tommy and I helped her move all her stuff into the U-Haul and drove her to the upper east side where her apartment is. I was ok until we drove away from our house. I began holding back tears and swallowing the urge to cry. I was ok the drive uptown. However seeing all her “stuff” in the bedroom of the apartment hit me like a lead balloon and the next thing I know I’m crying, and so is she. After a few hours there wasn’t much more we could do. The rest of unpacking and putting away her belongings was up to her. So Tommy and I decided to leave. That was terrible. We kept hugging and crying. It was so sad. I’m going to miss living with her so much. No one makes me laugh like Lelly, except for Tommy of course.

So after bringing the U-Haul van back, Tommy asked was it ok that our 2 older girls became so independent after graduating college; when they reached their early 20’sand moved out on their own. Whether it be because they were married like Alyssa or like Lelly did; chose to move out while still single. I said I guess this is how it’s supposed to be. But honestly I don’t know, I mean nothing about our raising children was typical starting off with Thomas. I tried my best with the girls all while killing myself to get Thomas help. I wasn’t ready to have the girls move out so fast. I was enjoying them so much as adults. The talking, the laughing, just being together. It’s nice. No pressure, no worrying about doing things “right”.

This doesn’t seem fair.

The Jersey Shore and Samantha

A couple of days after the summer program ended, Samantha and I spent 4 days at the Jersey Shore in a quiet town called Ocean Grove. It’s a “dry town” meaning no alcohol, quiet, mainly Christian influence. We really like it there. It’s also our go to beach for a day trip. No one bothers you there. There’s no loud boardwalk with tons of loud kids playing loud games. If you haven’t noticed I don’t like loud kids. Not to side track but when Tommy and I were in Aruba this summer we ate this Italian restaurant. I was seated facing this family with 3 children ages approximately 14 years, 10 years and 7 years old. The 2 younger children were so loud and totally obnoxious. Yelling at each other, banging on the table with cutlery/silverware, grabbing each other. I was so appalled. Never have my own children acted like that in a restaurant nor have my friends’ children. Like it just would NOT have been tolerated. And guess what? I looked over at the parents who were sitting with their children and they were both ignoring the kids and on their phones. Unbelievable! Thank God they were finishing up dessert and then left.

Anyway I digress; I was talking about staying in the town of Ocean Grove, NJ with Samantha. We had a really nice time together. We only spent one day on the beach because someone (who was NOT me) didn’t use sunscreen and ended up with a pretty decent sunburn. So we did other things, one cloudy day we visited my mom who lives about 20 minutes away, went to Asbury Park boardwalk where they have this arcade booth with just about every pinball machine and video game ever made. It was really cool. I didn’t play any games but my Sam certainly did. She had a good time and we even had a pictures taken in an old fashioned photo booth, the pics came out nice.

I even visited a psychic (yes I am aware as a Christian it goes against Christian beliefs) but I couldn’t help myself. She really didn’t tell me anything I didn’t know, except that she said there is someone in my life who would like me to “crumble,” to see my life fall apart. That was interesting. I’ve already crumbled when Thomas was violent with me. I told Lelly and she said, “Oh mom, you have a hater!” I couldn’t help but laugh a little at that.

When we arrived home we found out Samantha made the varsity Volleyball team for her high school! Yayyy! Go Sam, Go Sam!! We had a nice time together, I’m glad we went.

New School Year/New Everything

Next week begins the new school year 2022-2023. It also begins a new chapter for the school I work at. We have a brand spanking new building to house our students. It’s exciting and nerve wracking all at the same time. My computer at our old site was older than dirt, a desktop with a tower if you remember back far enough. I found out that we are being assigned brand new computers, yayyy! Rumor has it we also have a color printer and an ice maker. The ice maker is so cool because at our old site we used disposable cold packs for anyone who needed cold/ice applied to an injury. Now we can make up actual ice packs and keep them in the freezer. Sounds so silly to be happy about things a lot of people take for granted in their workplace. But that’s the way it is or was for us.

I miss my students. Don’t get me wrong I’m so thankful for my time off and I’m not looking to shorten the vacation I’m on, but I do miss “my” kids. I actually had a dream about one of my favorites, that this student had something wrong with them and I woke up a bit freaked out and had to realize it was only a dream. When I’m off for a decent amount of time I find I have dreams about my students. But the dreams are usually about me forgetting to feed someone or forgetting what new class they’re in. The last dream I had about this new school building had me running all over the place as if I were in a maze to find students who needed care in a timely manner. Weird.

I miss my co workers as well. When you see people everyday you form relationships and learn about their lives. Recently I’ve been talking with a social worker that has been hired to provide counseling to our students. I really like her and I find we have a lot of the same goals for the students and the parents we serve. During the summer program I ran down to her office to tell her something minor and we ended up chatting for quite some time. It was nice. She wasn’t aware of Thomas, that he is special needs and had attended the school we work for. When I explained Thomas’ situation and former experiences it took me back in time and I felt I was reliving his last year or so before he began residential school. It was unsettling in a way and I got over it but still…you would think after all this time it wouldn’t get to me. But it does. Not that I don’t want to talk about Thomas, I’ll gladly tell my story if it would help someone else. I guess I was caught off guard that day.

So here’s to a new school year! I hope we are all successful in meeting the challenges we face in performing the tasks for the different jobs we all have!