Special Needs. Two words that can encompass so much. I used to think I was “ok” with having a special needs child. That’s when Thomas was all of 3 years old. I thought I had accepted Thomas for who he was. In reality I had not, not at that time in my life. I was young, Thomas was young and we had not been through enough for me to reach such a high level of acceptance.

There was however, one experience that was almost prophetic. Our pediatrician had sent me to a physical therapy specialist when Thomas was about a year old. She wanted his opinion if Thomas still needed physical therapy even though the city of New York deemed it necessary. At the end of the consult the specialist disappeared and I was left with his assosciate who told me to continue Thomas receiving physical therapy and to continue him receiving services through the city program of Early Intervention “in case he needs special ed services when he’s older”.  I remember I felt ill. Why would this perfect boy of mine ever be in special ed? It was then that I felt as though I would always have to protect him, be his voice, speak up for him and fight for what I thought was right for Thomas. At that time I also knew deep down that he would need special ed services and that he would never learn to read. I have no idea why I thought those things that day. Today Thomas can read and write his name and a few sight words but he cannot read a book.

There it was. Finally.  The time in our lives  that I accepted the fact that Thomas was indeed  “special needs.” It wasn’t during or after the first time he needed to attend a residential school. It wasn’t during the many medication trials or many visits to specialists and “experts”. It was after a neurologist appointment with the renowned Dr. Arnold Gold at Columbia Presbyterian Hospital. Way uptown in Manhattan when Thomas was 12 years old. It was Dr. Gold who observed Thomas with an eagle eye. Examined him more thoroughly than he’d ever been examined by any neurologist. And picked apart and analyzed MRI results and psychiatric reports. It was Dr. Gold who revealed that our Thomas had “Static encephalopathy.” Which in layman’s terms means brain damage that will not get any better nor will it get worse. The damage either happened in utero or during delivery; we’ll never know, and that’s ok.

12 years it took to get a definitive answer. We had partial explanations for Thomas’ behavior but never before had anyone put all the pieces together and placed the answer before us wrapped up with a bow like a gift…but not a gift.

Yesterdmy 22 year old adult son came over for dinner. He was pleasant, easy going and very talkative. I enjoyed dinner with him. Things are what they are. And God gave us this child to raise up and we did the very best we knew how. We were fortunate that God placed people in our lives at strategic places in time. There are no coincidences and it didn’t just so happen that helpful people showed up when they did. God has His fingerprints all over him.

The school I work at is a 12 month program so they run year round. We’re given a choice of whether or not to work. I chose to work. At first after being off for a few days I was like, “Oh jeez what have I done?” But now that I’m in the groove of things I’m glad I made the choice to work. Everyone that works here regularly are here because they want to be. And the teachers are really into making it a low stress environment/ summer camp like feeling. There are still lessons being taught and therapies in session, but most of us are in a light hearted mood…I can’t say all of us are lighthearted, there are always some people who aren’t happy no matter what the situation.

My work load is a little lighter than during the regular school year. Don’t get me wrong there are always busy times of the day but some students come and go on vacation. Some parents chose not to send their children for the summer. I think my favorite part of being here is the atmosphere. Even though we’re all working it’s still the summertime and those of us with children at home are less stressed because we don’t have to get anybody anywhere for after school activities or wake up sleepy children to get ready for the day.

The summer session ends on August 14, that gives me just over 2 weeks before school starts up again. I’m ok with that. I really do like coming to work. I never thought I would ever, ever say that about a job, especially a job in nursing. I didn’t feel this way about the job I had before I was hired by the Board of Ed, doing chart abstraction. When I was laid off I was really upset even though I knew it was a temporary gig. I had gotten so used to working and of course loved the paycheck. Turns out that was such a blessing in disguise.

God really does know what He is doing even though it doesn’t always seem like it. I never would have applied for this job if I was never laid off. I would have kept on working that temporary gig without searching for new employment because I didn’t have to. When that door was closed God opened this wonderful window and I now have not only a job but a career. One that I’m even looking to advance my education for.

I love what I’m doing and I get paid for it. How many people can say that? God is so good.

 

I’m listening to one of my favorite pastors via Sirius XM radio, Dr. Michael Yousef. I really enjoy his manner of preaching and the way he conveys the Lord’s message. This week he spoke of spiritual gifts. This morning he spoke of the gift of faith. That we live by faith by walking by faith. I began thinking of my life and am I walking by faith? What is my spiritual gift?p

I know I have talents such as writing and being a good listener, but I cannot say with certainty that I know what my spiritual gift is. I have friends who’s spiritual gifts are so apparent such as the gift of evangelism, the gift of prayer and the gift of mercy. They use those gifts so effortlessly it’s beautiful to watch God in action.

I know I have faith, my strongest test was the two recent deaths in my immediate family of my father in law and my father. When my father in law passed on I remember feeling surrounded and protected by love. It was odd yet so comforting. I believe that that experience could have only come from God.

When my father died a mere 5 months ago. I had absolute faith that when he took his last breath on earth his next breath was taken in heaven. I still have that absolute faith and I know that as a believer he is also in heaven with Jesus. The deaths of my father and father in law showed me that God is so very real and His love is true.

The friend who’s gift is evangelism; I envy. I wish I had the boldness to proclaim the Gospel to people I don’t know. I don’t deny my belief to others but when I’m placed in a real life situation where I have the chance to be spreading the Gospel, the good news of Christ, I freeze and usually let someone else take the lead in that area. I have no problem evangelizing here in my blog though. Go figure.

 

I love handbags. I have a great collection that my husband has graciously given up his bedroom armoire for. Some have been bought by my husband, some bought by me, others scored at the thrift. It doesn’t matter where I get them, I adore bags. I used to be a hobo bag gal but found I love the ease of a tote. So I have a few totes in various colors and designers. My favorite is a Louis Vuitton that Tommy purchased for me I think 10 nyears ago? She still looks as fabulous as the day I brought her home with little signs of wear and tear.

My other favorite type of bag is a handheld handbag, or one that sits in the crook of your arm. There’s something so wonderfully feminine about that type of bag and the way you carry it. The bag becomes more of an accessory for fashion and less emphasis on function.

My close friends know what a bag whore I am and they take it all in stride. I started out as a shoe whore from my teen years and while in my twenties. I discovered my love of bags probably in my twenties. I wanted a Louis Vuitton “speedy” or doctor’s bag so, so bad. But…the kids were young, I wasn’t working, Tommy worked a ton of overtime and money was better spent elsewhere. And I was ok with that. One day my best friend, Jackie knowing how much I wanted that bag gifted me hers!  I almost fell over when I opened the packaged she mailed to me. My hands shook. And I love her for not only that but also because she is probably the kindest most thoughtful friend ever.

A couple of months ago I scored a vintage Chanel bag at the thrift. I sent her out to a specialty handbag spa to be cleaned and freshened up. They did a great job and I enjoy that bag as much as any other. You can’t tell it’s a Chanel unless you look closely at the bags zipper pulls and quilting. It’s not your typical, well known  Chanel; black with a gold chain strap. I like that it’s an under the radar bag.

Everyone has their “thing” that they are over the top about. It doesn’t even have to be an object it could be movies, concerts, car shows, magazines etc…That someone likes to invest their time and money into. Mine just happens to take up a lot of room. Don’t get me started on shoes…

 

So this guy in my life turns 22 years old today. The one who made me a mom first. The one who made me grow up. The one who tested me in ways I never thought I’d be tested. The one who led me back to The Lord. My Thomas. Like most moms I can remember the day of his birth like it was yesterday. It’s amazing isn’t it.

22 years ago on July 5th this now young man came into my life. He not only made me a mother; he made me an advocate, he gave me a loud voice and he made me realize not everything is as it seems so I should stop being so judgemental.

People always say they wouldn’t change a thing about their special needs child. I waver back and forth on that issue. I worry about Thomas’ future of course even though Tommy and I have taken measures to ensure he’ll be cared for if something were to happen to both of us. I don’t know if I could change him; would I? Would he still be the sweet young man he’s grown into being? Would he still have the same sense of humor? Would he still be so likeable and loveable? I guess I’d like to pick and choose his attributes which would be impossible.

I sometimes wonder if God made Thomas the way he is to spare us as parents from something worse than him being special needs. We serve a mighty God and His ways are higher than ours. One day all our questions will be answered, that is if we even care enough to ask at that point.

So I guess my answer would be no, I wouldn’t change him. How could I after seeing what a great young man he grew into? Thomas today is kind, funny, loving, caring and an all around nice person. Why would I want to change that?

 

 

 

 

I’ve been active on social media for the past 9 years or so. I’ve written a blog for the past 5-6 years.  I’m a mature adult so I realize not everyone has the same view points about God, politics, sexual orientation and life in general than me. I am a Christian and I have no problem professing my faith especially when it comes to this blog. I’ve written many posts about my Lord and Savior Jesus Christ and how He can and will change lives. My testimony and how I met the Lord personally tells how  Jesus can and will meet you where you are.

For those of you not familiar with my testimony here’s the not so short version: My son Thomas had to stop taking one of the medications that was essentially the glue that was holding him together. When that drug was out of his system thomas became very aggressive particularly to me. As a result he was in and out of a psychiatric hospital in upstate NY. I became angry at God, what was the point of all this?  Why was God allowing this and why was I not privy to His great plan? My husband had never seen me like this; angry. One of my dear friends, Toni suggested I listen to a song, “Praise You In This Storm” by Casting Crowns https://youtu.be/L5bLvVjJ4MA.

It was one of my favorite songs, one I had sang along to many times. At Toni’s suggestion I put the CD in while driving and really listened to the lyrics. I was stopped at a red light with tears streaming down my face. I had a distinct vision on Jesus standing by my side catching every tear that fell. It was then that I knew it was ok that I didn’t know God’s plan. That His ways are higher than ours. I felt at peace for the first time in weeks. I didn’t feel as though everything would’ve alright I just felt as though God had this and I no longer felt the need to be angry. I knew I had a personal encounter with The Lord and He had indeed met me where I was.

Due to that encounter with The Lord I know He is real, He is the living God and I have no fear of my future, it is in His hands. Only recently have I completely surrendered my life to The Lord. It felt so freeing and so, so right. I know He will never lead me astray. If it is good and right it is from The Lord. He will never leave me or forsake me. His promises are real.

I enjoy writing this blog and sharing it on social media. I know there are plenty of people who have little to no interest in reading the gospel. That Jesus lived a sinless life, died like a criminal on a cross and rose again. The gospel is so powerful it drastically changes people’s lives. It is simply amazing.

Because of my relationship with Christ and the life I now lead due to my belief in the gospel,  I have less tolerance for jokes that are an offense to God. I won’t go into examples because someone else might  think what I find offensive to be no big deal. I’ve unfriended people in social media due to my relationship with my Lord and Savior Jesus Christ. My true friends know me and respect my faith and encourage prayer whether it be in person or via social media.

My hope is that someone who is not a believer or one who is not saved will have their life changed radically by the gospel of Jesus Christ. I adore my family of believers and I hope for that family to grow larger.

Yesterday Samantha and I met my mom and my nephew at a really nice, sweet beach town in south Jersey. It took Samantha and I about an hour to get there from where we live. But that’s ok we got there, found parking, met up with my Mom and Jacob and all was well.

Samantha is a fish in the water man! She only came out of the ocean to eat and to tell me she wanted me to go in the water with her. I had to go get her out of the water when the lifeguards were ready to pack it in for the day. Even then she didn’t want to get out. Samantha definitely gets that attribute from Tommy. I’m more of a spectator of the water preferring to only go waist deep. The water was beautiful though. I love the ocean and the beach in general. It’s like a mini vacation/escape for me when I’m at the beach. To sit there and people watch and listen to the waves hit the shore is pure bliss.

In between going in the water with Samantha, I did manage to sit in the sun for quite a while and chat with my mom. I also managed to get a sunburn even though I used sunscreen, you can definitely tell the places that I missed or didn’t reapply.

Chatting with my mom was the best though. I really enjoy her company. My mom and I are pretty close and I love that we have a great relationship. She’s always been one I can talk to, even growing up. She was never unapproachable and always honest with me. Since my dad died almost 5 months ago I treasure our relationship even more. I even get nervous some days that “ something” will happen to her. So I don’t take our relationship for granted.

I find it hard to believe it’s only been 5 months since daddy was called home. In some ways it feels like it’s been longer. But then again some days it’s like he was just here yesterday.

Sitting under our rented green Ocean Grove umbrella we were reminded of last summer when we managed to get my dad to come to the beach; he was not a “beach person”.  When we met up together on the boardwalk we were wondering how we were going to get him and his walker down to a spot on the sand. Seemingly out of nowhere this young guy asked us if we needed a wheelchair and he motioned towards this beach wheelchair with huge wheels that could conquer riding on the sand. Of course we said yes and my dad was pushed in the wheelchair down the beach to our spot and we set him up under the umbrella. It was nice to spend that time with him. I’m glad to have that memory.

Here’s to more beach days and less sunburn!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

On April 5th of this year I joined a fitness program called The Max Challenge (www.themaxchallenge.com). The exercise component is 5 days a week for 45 minutes. There is also a nutrition program to follow, I won’t say it’s a “diet” but more of a lifestyle change to one’s eating habits. I’ve been dairy and sugar free; except for fruit and the occasional dark chocolate; for about 12 weeks now.

It wasn’t an easy change at all. In the beginning of my first 10 week challenge I hated the way I looked and would practically force myself to go to the gym and exercise. I hadn’t exercised at all in a million years. After a while it became routine and I began to look forward to going to the gym. The change in my eating habits became easier to adjust to as well.

I have great support people all around me, my husband and kids at home, one of the teachers I work with who had already completed 2 challenges (and looks amazing~ Vanessa), my mom who decided to do her own challenge, and there’s also the people I met at the Max gym. Everyone is very encouraging. When you start going to the gym for an organized exercise class you worry that you’re being looked at or watched. Not so at the Max. Everyone is so busy trying to do their personal best they could care less about what you’re doing. It is great and very freeing.

So far I’ve lost 20 pounds and I want to lose more.. I shock myself to say that I’ve lost 20 pounds. It’s also quite sobering that I’ve been that heavy. I’m short at 5’2”, there isn’t anywhere to hide a substantial weight gain.

I became very comfortable in wearing big flowy tops and shirts. I watched my jeans size go up and up. I loathed it, every part of being heavy. My husband was wonderful and always told me I looked beautiful, I didn’t believe him. I did not like my picture taken.

The Max Challenge changed everything. I’m so glad I made that phone call and talked to Vanessa at work. I forced myself to confront my weight and the fact that I wasn’t eating the right foods. The picture I’ve included shows my “before” taken  the first week of the challenge. I was not a happy camper and did NOT want my picture taken.  My “after” photo was taken during week 10, the end of the challenge.

I look forward to my next “after “ picture in 10 weeks.

 

 

The school I work at is a 12 month program, meaning they have school year round. I remember when Thomas attended this school they took a lot of day trips during the summer and it was more like educational day camp rather than traditional school. I don’t know if it’s still like that or if it depends on the teacher. I’ll find out.

We are given a choice of whether or not we want to work over the summer. My older girls will be busy working or hanging out with their friends and Samantha was chosen by lottery to participate in a “STEM” (science, technology, engineering and math) program run by and free of charge by the board of education. So it’s a win win situation.

I’m looking forward to working the summer. I already know the students and the staff. My decision was an easy one to make.  Plus the summer session ends August 14th I believe, so that still leaves me just over 2 weeks off from work in the summer. I’m cool with that. I’m glad my co worker nurse Tom is working too. We get along quite well and share a lot of laughs, it’s a pleasant environment in our office. In addition to the students who stop by for a bandaid, temperature check or simply for attention we get staff who stop by to just say hello and it’s really nice.

I’m still in awe of God’s plan to have me work at this school, here in my borough; 15 minutes from my house. I love the way God works. It’s all so perfect in all so perfect timing. There are days I wonder what it would have been like to work in Manhattan. Until I was offered the position here, I was ok with commuting and being in the city everyday. To be honest when I was first told the principal wanted me to work here I did hesitate for a minute. Wondering if I would want to work here and not in Manhattan. I quickly realized what was falling right in my lap and of course accepted the offer.

So this summer should be nice. I already enjoy coming to work for the past 7 months, I’m sure the 6 weeks of summer program will be just as rewarding.

 

 

 

I just read on my sister’s Facebook wall, in regard to parenting, “The days are long and the years are short”. It got me thinking my gosh that’s so true! I remember when Thomas was young, like 3-4 yrs old, he was off the wall behavior wise and whenever he was home from school the days just dragged and dragged. Tommy was working overtime; a lot and it seemed I never knew what to do with him or how to keep him busy or how to avoid a 30 minute tantrum.

I enjoy him so much more today as a young adult. But getting here was anything but easy. Twice we had no choice but to go the residential school route. If there’s anything I could change about Thomas’ childhood it would be that we wouldn’t have had to place him in a school so far from home. Both residential schools were in Yonkers NY. In fact Thomas’ last school was a 10 minute drive from the first residential  school he attended. Small world I tell you. Both schools were excellent, both had wonderful, caring staff. I don’t think we could have hand picked staff as awesome. God is so good. He gave us and Thomas exactly what we needed exactly at the time we needed. His grace was amazing. I can say that now in retrospect. At the time it was painful to be in that season of our lives. But we got through it, twice.

I honestly don’t miss the days when my kids were young, like under the age of 10. Even regarding my girls I don’t miss it and for the most part they were just typical kids with the most typical childhood we could give them. Samantha is bringing up the rear in terms of growing up. She’ll be 12 years old this August and I’m amazed at how fast the past 12 years have gone for all of us. Daniella was 5, Alyssa was 8 and Thomas 10 when Samantha was born. I remember my friend Jenn saying that Thomas would be 20 when Samantha turned 10.  Now she’s 11 and he’s 21. Amazing I tell you.

I know I’ve written about this before but it bears repeating; I really do enjoy the company of my kids at the ages they are now, all of them. Samantha is much more independent than her sisters were at her age. She’ll think nothing of getting on her bicycle and riding around the corner to the playground by herself. She still likes it when I come to the park with her but it’s nice that she will entertain herself. I’ve become spoiled I guess.

It’s nice to have the conversations that we do. Alyssa and Lelly are not ones to hide their feelings and are very honest and forthcoming with me. I love that about them. I also love that they are young adults. They listen to me (at least I think they do) and we can laugh about life together.

Even the time I spend with Thomas these days is pleasant. He’s a really nice person and I’d say that even if he weren’t my son. I don’t think about the past when we’re together. Sometimes he’ll bring up the staff and students from his last school and how much he misses them. That’s so “normal” I embrace those times with him. There’s are times like this morning when I went to drop off money for him to go out with the guys that I just hug him. He’s very warm my Thomas and always hugs back. He’s very warm my Thomas.

“The days are long but the years are short.” So so true.