Making Plans….

Tommy and I are unfortunately well versed in tough parental decisions. Thomas gave us plenty of experience in that arena. From deciding to have him take prescribed medication at a young age to residential school also at a young age and again during his teen years. You know, when Thomas returned to living with us after the first time at residential school I had this vision/life plan of his growing up with us in our home with the rest of our family. But that’s not how it panned out. Through no fault of Thomas, we had to discontinue a medication for medical reasons that was essentially holding his aggression at bay. Without that medication he became violent and could not continue to live with us. Hence the second time Thomas had to live at a residential school. We were fortunate that in this circumstance God was certainly present and the staff at this school was amazing. Every single one of them. They worked diligently with our son so that when it was time for him to leave he was a safe, pleasant young man who transitioned to the group home with ease.

Again, I had a plan of what it would be like to have Thomas living geographically close to us. We would have him over for dinner a couple of times a week, we would go to church together; if he wanted to go to the mall or wherever I would be happy to take him. Well, things didn’t work out that way. Thomas prefers to come here once a week on Sundays. He doesn’t like coming to our house during the week and shopping trips with him are not for the faint of heart. I did take him to church and Thomas spoke loud and throughout the whole service. If he wasn’t talking about God knows what, he was telling me how much he needed a tissue. Of course I didn’t have a freaking tissue. Not a good time; for me anyway. I stopped making plans after that and just decided to give it up to God and our relationship with Thomas would be what it would be and we would be more than happy with the situation.

There have been many times I’ve given situations up to God and have been amazed at the outcome. I shouldn’t be amazed. I should be grateful and humble and most of all thankful. He does move mountains, more than we ever know. However we also need to acknowledge His ways are higher than ours and when a mountain does not move, God has His reasons and we are not necessarily privy to His reasoning.

Smokey

Our cat Smokey died last week. Tommy found him. It’s terrible and sad. There’s seriously enough going on right now in the background and then Smokey dies; goes over that rainbow bridge. We had 3 cats; in order of their ages, Belle, Smokey and Cash. Smokey was the coolest IMO. He didn’t care if people came over he would stand his ground and hang out in the kitchen or dining room. Even if someone came over to visit with their dog like my parents when they had their dog Daisy or Sam and Alyssa with Clayton. Smokey wouldn’t care or be intimidated nor would he leave “his” kitchen. Oh no.

It’s so sad when you lose a pet. They are seriously a part of your family, part of your daily routine. I would have my coffee in the morning and my gray friend would jump up on the chair right next to me. Then he would be half standing on my lap. This is after he had gotten himself underfoot with Tommy trying to get Temptation treats at 5am. Not a good time to be weaving in and out of someone’s legs.

He always looked unkempt because Smokey wasn’t one to really clean or groom himself much. I would have to brush him and even then his fur looked weird. I didn’t care, to me he looked handsome. He was such a good cat, never mean and he always made us laugh.

Difficult Seasons

I always thought our most difficult seasons in life were all about Thomas. Getting him diagnosed and appropriately treated; finding the best schools for him. Dealing with doctors and medicine changes and having him attend a residential program away from home. I was wrong. Difficult seasons don’t go away and never come back. Seasons in life that are difficult to navigate shift and involve different main characters. Today Thomas is doing well in the group home he calls “my” house. So we were able to weather the seasons that involved Thomas.

These days we are deep in the depths of a difficult season with our youngest child. I tell myself this is temporary, that’s it’s “only a season.” However when you’re in the midst of said season and there doesn’t seem to be solid answers or light at the end of the tunnel you feel the weight of the situation as being even heavier and there’s an indescribable sadness. You would think with all our experience in handling difficult situations with Thomas we would “pro’s” in weathering storms. Nope.

I’ve been praying and thinking a lot about God. I don’t blame God for this situation, no where in the Bible does it say you will have an easy life when you accept Jesus as your Lord and Savior. Nor does the Bible say “God never gives you more than you can handle.” I loathe that saying. Bullshit. He certainly does give us more than we can handle. I can attest to that. It is only when we go to Him and ask His help that we are conquerers of the dark times.

Being Transparent

Many times when I write this blog I forget who is reading it. Not that I forget everyone who comments on social media or on the blog site; because those comments are very kind, insightful and supportive. More like I forget that I put myself; my life in public view. I keep no secrets about my life with Thomas and what I went through during the years when he was violent and aggressive towards me. And after we decided residential school for Thomas was the best decision, I went through a very scary time of depression and trauma. I was so fortunate and blessed that there were already people in my life that were able to help me. Thomas’ previous psychiatrist was placed there by God’s grace and my therapist, Nancy is a wonderful woman I met via my son when he was 7 years old. I contacted her so many years later for advice to have Thomas placed in residential school when he was 16 and she immediately said she would see me when I mentioned that I needed a therapist. Before Nancy, I was searching and searching for a therapist; calling one after another. It was horrible. Some never called back, some weren’t taking new patients and some would return my call a week later. Nice. You’re a mental health professional who waits a week to return the call of someone requesting help. Them I hung up on.

Today the depression is at bay, I’ve healed from the trauma and Thomas and I have a sweet relationship. He’s really nice to be around and go out with …most of the time. We all have our moments, Thomas included. Tommy and I are Thomas’ legal guardians but the staff and the nurse at the group home handle his dental and medical care and appointments. The nurse will call me after almost every psych appointment if meds are to be adjusted, added and/or taken away for my approval. I don’t have much to complain about with the group home.

I often write how much I enjoy my children now that they are young adults. That’s not to say I was miserable when they were young children or didn’t enjoy them then. Life was so much more difficult then and there was always something to take care of. It was hard to put aside day to day errands and just *be* with my kids. I remember a handful of times I was able to put everything on the back burner and just hang with them; those times were nice and I have great memories with them.

Today we are still meeting hurdles to overcome. I feel like we are in an odd place in life. It’s Tommy and me and Sam living at home. Days of running kids here and there are over, Thomas is settled, Alyssa is married living a great life with her husband, Sam; and Lelly is having a good life working and living in the city. I’m very proud of our older children for the adults they’ve grown into being.

Sam, our youngest is a challenging person. A challenge I never saw coming but looking back; in retrospect the writing was on the wall. Isn’t it always? Gotta love hindsight (not). I love this child of mine like any mother does. I’m making decisions and giving my consent for issues most moms won’t ever have to. And I’m honored to do it because Sam trusts me.

Spring/Easter/Passover Break!

I slept in this morning to the glorious late hour of 8 am. Public schools; of which I work, are on break beginning today, whoooohoooo! I don’t have many plans. We aren’t going away and Sam will be home as well so that’s cool. After a mid morning virtual appointment I spent some me time at TJ Maxx and scored a pair of designer shoes; so yay!!

But seriously, and I’m not bragging; to have this long of a break is really nice. One of the perks of working for the DOE. As an RN I took a pay cut to work Monday to Friday, weekends and holidays off. I also get school holidays off and all the breaks like winter, February, etc…. I don’t complain about my paycheck, the city makes up for the difference in many ways. I work after school programs and since my school is a 12 month program I work summer school. I don’t mind working summer program, it goes fairly fast and there’s still a couple of weeks when it’s finished to take a vacation and go away.

I never thought I would work for the DOE. Actually until about 10 years I wasn’t sure I still wanted to be a nurse. But…it was the only thing I was trained to do and the only job I could get hired for. So after much soul searching I began applying for nursing jobs; part time at first which led to a temporary full time gig at an agency and when that was over then the DOE. I knew I had applied for what’s called here; District 75. Special education and medically fragile student population. I’m so glad I hit that submit button when I began to have second thoughts about applying. The next thing I knew, two days later I was being interviewed and then hired. As I’ve written so many times I love my job. I love what I do. Many of these students are very medically fragile and I’m trusted with their care. It’s humbling. And I enjoy using my nursing skills, just when you think you’re not going to use a skill you learned in nursing school along comes a student who needs that procedure. It’s amazing.

So getting back to “the break.” It’s really, really nice I can’t lie. And today the weather is exceptional. I want to wish you all a wonderful holiday this spring season, whatever you celebrate !

My Birthday(s)

My birthday is tomorrow. I’ll be 53. I’m ok with birthdays, well mine anyway. I have a hard time with Thomas’ sometimes. Maybe because he’s my oldest and some days I can’t believe he’s going to he 27 this July. It can’t be that long ago that I gave birth to him. It’s truly amazing how fast time passes us by. I don’t have this issue with Alyssa or Lelly’s birthdays and not Sam’s either. Although some days it feels like yesterday for so many of Sam’s milestones such as junior high, being schooled virtually due to the pandemic then next thing I know she’s physically attending high school. And high school flies by as all you seasoned parents know.

The only birthday I had a hard time with was 30. And I still don’t know why. It just seemed such a large, difficult number of years to have aged. 40 was ok, pretty cool actually. Tommy threw me a surprise party. I was mostly surprised and we had a really great time. He really outdid himself. 50 seemed to simply sneak up on both Tommy and I since we were under quarantine at that time. My mom drove out here to do a drive by “Happy Birthday!” She parked in our driveway, we chatted for a bit and she went home, it was sweet. I didn’t want a party for my 50th anyway. I wanted Tommy and I to go away to celebrate us both meeting the big 5-0. The next year we celebrated in Las Vegas and last year in Aruba so I really have no complaints.

I’m not sad about turning 53. Probably because it’s still close to the number 50. I like my life. I have my husband who loves me and shows that love just about every day of the week. Like most married couples we’ve had our share of challenges; Thomas being the top of that list. But we are together after all that was thrown at us when we were younger. I still remember my transformation from this quiet, trying to take it all in young mother to a very vocal, say what’s on my mind whether you like it or not, advocate for my son. I’ve transformed again to suit my life as it is. I believe we are always in a state of transformation. We change and grow as we age with the new challenges that we confront and we lay the past to rest. Bringing what we’ve learned in to the issues at hand in the hear and now. That it’s okay to ask for help, that there’s nothing wrong with listening to someone’s help/advice and deciding if that’s the way you want to or don’t want to deal with a situation. And there is absolutely nothing wrong with going with your gut. Even when it doesn’t make sense to other people.

I have a job that I love and co workers who are simply amazing. The paras at my school go above and beyond and I rarely hear them complain. Working as a para in my school is not for the faint of heart. They provide physical care to the students in addition to assisting with educational assignments put forth by their classroom teachers. And lest I forget the teachers who work hard man. Bringing out the best they can with the students they have assigned to their classes.

And I totally enjoy my co-office nurse, Meg. We’ve been working together a year this summer but it feels like longer; in a good way. I’ve learned quite a bit from her and we’ve learned a lot of things together. She’s a total team player who is so very fast to lend a helping hand. And OMG how we laugh! Sometimes we laugh at ourselves and sometimes not. We laugh a lot about what nurses find humorous which usually isn’t that funny to most other people.

So after midnight, it will officially be my birthday. I’ve had a wonderful weekend so far and have been spoiled rotten by my family and friends. I love them all so much. And today all my kids will be here to celebrate and for that I’m so grateful!

Compliments

Why when we receive compliments we find those positive words and phrases so difficult to believe and own? When Thomas was 12 years old Tommy and I were recommended to take him to a well known neurologist named Arnold Gold up at Cornell hospital. He was like a star in the world of neurology and he did not take insurance. I believe his fee for a consult at that time was 600.00. We arrived for the appointment and none of Thomas’ documents, MRI reports, psych evaluations; nothing had arrived to this man’s office. We were devastated because the doctor was talking of rescheduling the appointment and this one was already hard to get never mind that Tommy had taken off from work, the cost of parking, etc…. Dr. Gold, after hearing us out decided to continue with the appointment after listening to me promise that I was a great historian when it came to my son. I remembered every doctor we saw, every hospitalization, every medication he trialed, you name it.

So we started at the beginning and Dr. Gold was amazing. He took the most thorough history anyone ever took from me and gave Thomas the most thorough neuro exam he had ever had. And he had had plenty of neuro exams in his lifetime. At the end of the appointment all of Thomas’ documents, papers, reports, etc…miraculously appeared (they were sent to the wrong floor) and Dr. Gold was very pleased because he was now able to review all of Thomas’ tests and form his own report about my son.

When the report came in the mail I almost fell over. Dr. Gold began the written report writing that he enjoyed meeting Thomas’ “tenacious mother”. I had to look up the meaning of tenacious! “If someone calls you tenacious you’re probably the kind of person who never gives up and never stops trying – someone who does whatever is required to accomplish a goal” I stared at that word: tenacious. Was that really me? I had a hard time believing that I was “tenacious.” My husband agreed with Dr. Gold and it took me a while to actually own the compliment.

The most heartfelt compliments I’ve received are when they pertain to me as a mother and me as a nurse. Those are the ones that I’m like “really??” *blush* and say thank you and then have to talk myself into believing what was just said is actually true. I know you can relate. I like to compliment other people and I mean what I say. I know I wish o could accept a compliment and internalize the kind words. Someone wouldn’t say something if they didn’t mean it right? As I’ve written in the past I like to tell people how I feel in the here and now. If I see someone with great hair I’ll compliment a stranger, why not?

What’s the point in saying good and wonderful things at a funeral when the person isn’t there anymore? I think we all need to compliment in the moment. If it’s not well received, that’s on them.

When We Were Younger

My husband and I are in our 50’s (ugh it sounds so old!). And I can’t help but think of how much things have changed in our lives over the past 27 years that we’ve been married. We were married in November, 1995 and Thomas was born July, 1996. We didn’t have that “just married” time to ourselves to just be together. And that is fine; most of me is glad we had our children when we were young because we are able to enjoy them now when they are young adults. I’m extremely proud of all my kids. They’ve each excelled or are excelling and doing their best to live their lives authentically and on their own terms. Especially my older girls Alyssa and Lelly. Alyssa was married at age 22 and Lelly graduated college and moved out at age 21. They’re both young adults, working and doing great at their respective jobs.

Tommy and I spent most of our 20’s and all of our 30’s and 40’s raising children, me staying home most of the time; working part time here and there. My full time gig was being a stay at home mom. I can’t say I totally enjoyed staying home, it was hard work. To make up for me not working Tommy worked a ton of overtime and also a second job. So on top of being a stay at home mom I was also on my own a lot with the kids. I’m not complaining it’s just how things were.

Now that everyone; including us are older life is so different. We are different. We don’t disagree with each other as much as we used to. When we renovated our house it went so smooth, we were on the same page regarding just about everything from cabinet finish, type of tile, wall color, to crown molding. It made the renovation go so smooth. These days I listen more and speak less when my husband is talking to me. When I was younger I was insecure and trying so hard to keep my shit together being with my kids all the time. Especially trying to get help and treatment for Thomas.

When we were younger I think I cared more about what people thought. Did so and so think we weren’t “good” parents? Why do this one and and that one seem to have a problem because we chose residential school for Thomas? These days…I don’t care much what other people think. I know I’m a good mom and Tommy is a great dad. I know our decisions regarding Thomas were the most difficult any parent would have to make and I know we did the best for our family.

When I was younger I was very anxious and wouldn’t talk to Tommy about what was bothering me. Many times I didn’t even know what the main anxiety causing issue was. Right now it’s that our health insurance company isn’t recognizing out of network claims I submitted last week. But we all have health insurance issues don’t we. My anxiety used to be so bad. I couldn’t control the thoughts in my head and my mind took off like a freight train running through all these horrible things that were going to happen because I did this or didn’t do that. I hated it. But I thought that was “normal”. Today I know it is not. After a lot of therapy and some meds things are much better and I no longer live with the runaway freight train in my mind. If I do get terribly anxious I know something is really wrong.

I have some regrets about the past, but don’t we all, please. There are somethings I would have done differently but who’s to say if things were done differently the end result would have been the same? I’m so happy to be married to my husband. Tommy really is my best friend. It’s funny because we started out as just friends when we were teens and so many years later we married and we are still friends. He’s seen me through the good and the not so good, the ups and the downs and also the very lows. He gets me.

I think it’s good to see how you’re not exactly the same person you were when you were younger. And reflect on positive changes.

Darn Dogs!

Saturday evening as I let our 12 year old dog Riley out for the last time of the night I looked down at her and saw this large lump coming out her left side. I was like holy crap! And yelled for Tommy to come. It was late and Riley wasn’t in any distress so we decided to take her to the vet the next morning. We secured an 11:20am appointment at an animal hospital we hadn’t used before but came recommended by my friend Jenn.

We get there and I’m noticing Riley panting excessively, and thought to myself that our other dog was not panting like this and it was cool out so why was she doing this? The vet tech came and weighed our girl who came in at 106 lbs, wow. I knew she was big but oh my. The doctor comes in and recommends x rays and asked if she could put a needle in the swollen area to see what was inside. Of course we said yes. She comes back that there was blood inside the lump but the x rays and regular bloodwork were fine. She offered to send the blood from that area to a hematologist so they could see if they were cancer cells. Again we said yes.

No cancer cells. Turns out Riley has a hematoma from what, we don’t know. All we could think of was that Lola, our anxiety riddled other dog who is very excitable (understatement) often pushes Riley out of the way to get down the back stairs to get to the backyard. Maybe Lola pushed Riley off the stairs? Riley is so so sweet she never fights back or pushes Lola back. Meanwhile Lola who is so attached to Riley, freaked the eff out when we left to bring Riley to the vet. And I learned that when dogs are in pain they pant a lot.

So the vet put Riley on an anti inflammatory for arthritis, pain meds, thyroid meds and something else that I don’t remember what for. I really thought this was some kind of tumor and we would have to say good bye. It was a terrible thought as those of you with pets can imagine or have lived through. So meds and you can imagine how much money later, we were on our way!

What’s In The Past

Have you noticed that events that happened in the past never stay in the past? Some significant occurrences change your future. Others are so very important in shaping who we are today. I know if I didn’t have the experience I did in raising Thomas I would not be the person I am today. I used to be judge-mental, not very open minded and would be very quick to be loud mouthed with my opinion. I am very far from perfect; however, having a special needs child humbled me fast and made me stop and think a little more before speaking my mind.

I was speaking with my therapist yesterday and we were taking about Thomas. Thomas has always targeted me, hitting me before he even was a toddler. No one knew what to do to get him to stop. We tried everything and I mean *ev-erything* to stop this behavior. I think the worst part about it was that my pediatrician didn’t believe me. My family witnessed the behavior so they understood, but for whatever reason this doctor wouldn’t believe me. When Thomas became a little older, closer to 6 years old, I asked her for a referral to a child psychiatrist to help us. She flat out said she didn’t know any, effing liar. So I sought out my own psychiatrist/specialist who did not take insurance, and was located in Manhattan. My first experience driving in Manhattan; go me. This psychiatrist was and still is wonderful. He listened to me. I used to take notes on Thomas’ behavior, the hitting, the excessive tantrums and presented it all the the psychiatrist. Finally a professional someone that was taking me seriously. When I told the pediatrician I found a psychiatrist she suddenly came up with her own referral. Wow, how amazing. I told her I wasn’t interested in her doctor we already had one and I believed in and trusted him. Bitch actually became offended. I left the practice shortly after.

My point is that I hadn’t talked about that time in my life in quite some time. I had forgotten how terrible I was treated by this pediatrician and how awful it felt to have someone you trust flat out not believe you. I didn’t like that memory. And it made me think of events in your life that shape you. This is one such event. Once I grew a pair and realized how unprofessional and stupid this doctor was, I changed pediatricians to one of the best ever and didn’t look back. I also never let a doctor treat me that way again.