Month: August 2016

By the Grace of God

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John 9: 2-7

And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him. We must work the works of him who sent me while it is day; night is coming, when no one can work. As long as I am in the world, I am the light of the world.” Having said these things, he spat on the ground and made mud with the saliva. Then he anointed the man’s eyes with the mud …

When my son was younger I often thought I was being punished by God because of the way Thomas was. The horrible tantrums, aggression towards me, the multiple doctors, MRI’s, not being believed by specialists, having a pediatrician who was less than helpful…it was not a good scene. However, I was blessed with a supportive husband, parents and friends. And I can’t forget my wonderfully typical Alyssa who was so young at the time. Nonetheless I though I did something  to anger God and that’s why Thomas was the way he was.

Since then I’ve definitely changed my mind, I was not punished by God. Thomas, we later learned was brain damaged and it wasn’t my fault. I’ve also seen God work to His glory through my son. I’ve seen a change in me, Thomas absolutely changed me and the way I see others parent their children. He’s made me less judgemental.

I’ve seen God’s glory and mercy when Thomas was placed in the top residential school why he was just 8 years old. He was under the care of wonderful professionals who were more than happy to communicate with us. That placement in that school was definitely orchestrated by The Lord.

Thomas’ placement in his current school has God’s fingerprints all over it. The school, the staff and their timing are a true example of professionalism and caring all rolled in one. I never had to worry about Thomas’ safety or whether they were following his IEP.

Now as we wait for Thomas to finalize being transferred to the group home I have no one by The Lord to thank. Again and again He’s showed how His timing is perfect. His way is right and just. His glory has shown so brightly through my son. There is no other way to describe the works I’ve seen. There are no coincidences that work out so perfectly and wonderfully. His will be done.

 

 

She’s an Adult.

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I’m so proud of my daughter Alyssa. She started college today. Her first day. Tommy drove her in to Manhattan with him this morning. She said it went really well except for being unable to find her first class and arriving there late. She even made a friend. Everything you want for your child. I’m proud of her for going to college by herself in Manhattan. She’s very familiar with the city having gone many times with friends either shopping or going out to eat. But this is different, even though she’s still living at home she’s grown wings and is flying solo. She’s an adult.

Alyssa even went on an interview today to pass out a magazine during the upcoming fashion week. It’s a paid position and she has the opportunity to meet many different people including celebrities. I’m excited for her.

My heart swells for her. I love all my girls but Alyssa is my first girl. My first child after Thomas who was able to show me what a typical kid could do. And do it fabulously. I think of the days we lived in Jersey. Thomas would be going off on a tantrum and put in his room to calm down. I used to sit with Alyssa in front of Thomas’ door (guarding the door until he calmed down). Alyssa and I would sing the alphabet or her favorite Sesame Street song. She was 2 and fabulous even then.

I can’t wait to see what this semester brings for my YaYa. My girl. To watch her grow and blossom even more as an adult. I’m so proud of her.

College Orientation

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Here we are on the ferry going towards Manhattan. Destination: The Beacon Theater for Alyssa’s college orientation. It totally seems like yesterday that this stubborn, adorable 4 year old was crying for me to not leave her at pre k. She’s just as stubborn today complaining that she didn’t want to go to this orientation. I just listen there’s nothing I can say. She’s so beautiful, my daughter. And her future is so bright. Today’s orientation is just the beginning of an awesome, adventurous college education. She’s commuting from home this semester with plans to transfer to a different fashion college after this first semester. Alyssa has plans to dorm at the next college. I hope she does get to dorm. I don’t want her to leave home but I do want what she wants to make her happy.

So we begin another journey together but I’m not dropping her off I get to walk along side her for a day. And Alyssa lets me visit the world of a typical family seeing their child off to college.

Vacation is over

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Back to reality,  back home from vacation. We had a great week away. We went to the Outer Banks in North Carolina. It was my family and 2 other families renting a huge beach house. We all got along the adults, the kids…we all did whatever we wanted to do. Feel like going to the beach you ask?  I’ll meet you there. Staying at the house and hanging out by the pool?  Cool me too! Tommy arranged a fishing trip that I didn’t want to go on. Tommy, our girls and another family went on the trip. Turns out they got caught in a terrible storm. Tommy said something appeared on the horizon that looked like a tornado. They weren’t told until they were back on land how dangerous that “tornado” was. I’m just glad everyone returned safe and sound. Even though the trip was cut short they still caught fish.

I loved being at the beach. The beach we were at was gorgeous. Clean sand, sparkling clear green water. You could see your feet and the shells and the schools of minnows that would quickly swim away the closer you got to them. At first the water was so, so cold. But the weather was so hot out the water became refreshing. I was in the water with Alyssa and I couldn’t help but notice there was a very warm breeze blowing by while we were in the cool water. It was heaven. There was one part of the water that had a sand bar. You had to walk out quite a bit and even go past a fairly deep portion of the ocean to get there. But once you were there it was so cool. The waves were amazing. So calm and every now and then a high one. Im missing the beach as I describe it.

Samantha was in her glory as there was a boy her age staying with us who was also into the video games she likes. He was an all around really nice kid and they got along so well.

The drive home was pretty uneventful. 8 hours. Tommy asked me to drive for a hour or so. He wanted to rest his eyes since we were up and left so early in the morning. I didn’t mind driving it was just difficult staying within the varying speed limits. I was so worried of getting a speeding ticket.   Funny I don’t worry so much when I’m driving here at home. So now it’s back to work which I don’t mind. I missed New York a little. Not much…a little.

 

My Best Friend

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I have a couple of best friends. One named Jenn. We met when we were 17 years old when we worked for a children’s clothing retail store. We had a lot of fun together, Jennifer was always more outspoken than me and much more outgoing. I was the quiet and reserved one when we went out. We still had a lot of fun. We lost touch for a few years reuniting when I was pregnant with Alyssa and Jenn was pregnant with her first daughter.  We were also pregnant together again when I was pregnant with Lelly and Jenn with her second daughter. It was nice to have our kids so close together and Jenn was super supportive when things were really tough with Thomas.

We would go out together with all the kids. The best had to be when we moved back to New York from New Jersey. Tommy and I needed a new stove. The electric one that was there when we bought the house quickly broke down soon after our closing. Jennifer met me at Sears in the mall. Me with my three kids aged 5, 3 and newborn. Jenn with her 2, aged 3 and newborn. Of course Thomas and the 3 year olds needed to use the bathroom in the middle of Thomas having a meltdown. I was ready to just give up when Jenn put her foot down and said, “Oh no!  You’re getting a stove, I don’t care what it takes.”  We managed to calm Thomas down and she then took all the kids who needed it to the bathroom.  Just an example of how great Jenn was and still is. These days our lives are so busy we aren’t able to talk on the phone or meet up line we used to. But when we do speak it’s like time hasn’t passed at all and we just pick up and like no time has passed at all.

My other best friend is named Jackie and she lives in Wisconsin. We don’t see each other often obviously but we can spend hours on the phone. We met in an online community for kids with bipolar disorder. We hit if off pretty slowly first chatting quite a bit online then we exchanged phone numbers and quickly discovered we had more in common than just our sons. I firmly believe we were meant to be friends, our sons were merely the catalyst to our friendship. Her support to me when things were really bad with Thomas and my subsequent depression are priceless and something I’ll never forget her for. When my depression was really bad Jackie would call me seemingly out of the blue and always at the time I needed her the most.

My ultimate best friend is my husband, Tommy. We met when we were 15 years old  and quickly became  close friends. We began dating when we were around 17. We had the usual teen angst break ups and get back together times. We were engaged when we were 23 years old and married at 25. Our friendship has only grown stronger over the years. My husband had taught me so much about compassion and putting others before myself. Tommy is one of the nicest guys out there and I’m not just saying that because he’s my husband. Just about everyone he meets will tell you he’s a great guy. I love that we can talk about anything. It was like that over 25 years when we were “just friends” and it’s like that now. I look forward to many more years ahead with my best friends.

 

Vacation

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We rented a house with 2 other families this summer at the Outer Banks, North Carolina.  It’s going so well!  I spent most of today in my bathing suit either at the beach or in the pool. Yes a real vacation! When the kids were younger it was so hard to go away and have an actual good time  and be able to relax.

Just now Alyssa and I took off in search of a local bookstore. It was closed so we set off to this little village of shops. Of course I found a shoe store and just had to buy a pair. In my defense they are total beach shoes and will pay for themselves this week I’m sure. It was nice to be able to take off to the store just Alyssa  and I. Samantha has been like a fish in the pool. I don’t think you could pay her to get out.

Tomorrow will be another beach day and just as glorious as today. Tommy said he’ll join me and I can’t wait. It has been very hot here but at the beach the water was cold or should I say refreshing. It was wild to be in the cold ocean with a hot breeze blowing by. I didn’t want to get out of the water.

It’s amazing to be away with great people knowing this has all been planned ahead by The Father. There are no coincidences and He is aware of all our plans since they are after all His plans. It’s also amazing to be witness to the marvel of nature while at the beach. To know He is responsible for every single grain of sand, every wave that comes crashing and those waves that simply waft in gently. The sand crabs were created by Him down to the tiny ones who run across the beach at night. What a good Father.

Im looking forward to savoring every single day of this week basking in the creations of our God. Being away with my family and the families of others. I love the beach.

Looking back

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I’ve been reminded by Facebook of blog posts I’ve written on “that day”. It’s amazing to look back and see what I’ve written. I’ve always tried to be transparent and as honest as I could be; I’ve surprised myself in reading past posts at how blatantly true to myself I’ve been especially when writing about Thomas’ younger years and his first time at residential school. How God showed himself faithful and true. Even when I wasn’t looking for Him, The Lord showed up and made His presence known.

Reflecting back on those blog posts makes me realize God is present in all situations. And gives me encouragement in my struggle to surrender to Him. In looking back I know God has been my provider and my strength. Why do I doubt He won’t be here in the now and in the future? I think doubt is a too strong a word it’s more like I waver in my conviction. When I realize I am wavering I pray for forgiveness for my disbelief.

 

Surrendering

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I’ve been thinking a lot about surrendering to God. Giving over to him my worries and anxieties. It’s wonderful in theory but difficult in real life. I correct myself, it’s sometimes difficult in real life. I had no problem handing over Thomas’ situation with the group home. Handing that over to The Lord was a relief. I no longer fretted over whether or not he would get in to that particular group home; my view was that if he did not get in then it wasn’t in God’s plan for Thomas and there would be another group home on the horizon.

I’ve recently handed over my new job search to The Lord. I know I’m exactly where I’m supposed to be right now. If another job does not present itself well then I guess I’m supposed to stay where I am for a little longer. And that’s okay. I do like where I am and enjoy what I’m doing for the most part. More hours would be nice… So we shall see.

I do have one area of my life that I have a difficult time surrendering to God. It’s part of my duties/job description as a nurse at my job. I keep praying about it and I do surrender but then I take it back. Pretty typical. My friend Louise would say, “We put it on the table and then we take it back…” I want to be able to lay my anxieties on the table to The Lord and leave them there and not look back. I know it’s possible I’ve done it before. Surrendering and submission are the hardest things to do. But they are the best actions to take before God. To acknowledge that He is in charge, He holds all the cards and He is above all. I remind myself over and over that His ways are higher than ours and He does indeed have a plan.

I’ll keep praying and surrendering and worshiping the one true God. There is none higher and I’m honored to serve him.

 

Thomas and the Beach

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I’ve been wanting to go to the beach but my child who’s with me most often, Samantha is saying no. I really do like the beach, watching the waves and even better riding the waves as they come in. The last time Samantha and I were at the beach and in the water I was literally tossed head over heels by a giant wave. After I was done regaining my balance I realized I was having fun. But Samantha feels because we’ll soon be on vacation at the beach in a different state we shouldn’t go now. Fine…

So instead of going to the beach I got to reminiscing about previous day trips we used to take. I remember the last time I took Thomas to the beach. It was my bff Jenn and her 2 girls and me and Thomas and my girls. We were having a good time the girls were in the water, Samantha was very young and content to play in the sand. Thomas wanted to look for sea shells but absolutely refused to go in the water. Not even a bribe would change his mind. He was adamant about not going in. Fine so him and I would comb the beach for sea shells while Jenn stayed with Samantha and the girls.

All was fine sitting at our blankets until I looked up and Thomas wasn’t there anymore. I looked left, looked right; up and down the beach. No Thomas. OMG. My only saving grace of not panicking too much was knowing he wouldn’t drown since he hated the water. Jenn stayed with Samantha and Jenn’s older daughter came with me to look. After what seemed like an eternity we still couldn’t find him. Then I started thinking of every horror story of developmentally disabled people being lured away and bad things happening to them. How would I explain this to Tommy? How do I even go home?  I pictured myself camping out at the beach until he was found.

At this point Jenn and I decided to alert the lifeguards maybe they could help find Thomas. I approached one life guard and described Thomas that he was delayed and speech impaired, what he was wearing and that he really didn’t like the water. He was on his radio immediately. Turns out a life guard from all the way down the other side of the beach found him. As I walked the long distance to get him I was so relieved and happy I wanted to skip. I couldn’t believe how far I walked or rather how far Thomas had walked by himself.

Finally we met up. Thomas and the prettiest female lifeguard. I was so happy to see him. Thomas of course blamed me for him getting lost, “Mom…you left me…”  I was like, “Ha!  I didn’t leave you…you were the one who walked away!” It didn’t matter though I was so happy to see him. I teased him that he wanted to hang out with the pretty lifeguard. We walked back to Jenn and the girls.

I can’t describe the terror I felt when Thomas was missing. It was awful. I also can’t describe the joy I felt when we found him. The other times we took him to the beach was during a medication change and he refused to even look for shells and stayed glued to his beach chair with umbrella he wouldn’t have any part of being at the beach. Then he went to live at the residential school. I miss looking for shells with him.

 

The ferry

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I’m waiting at the ferry terminal for the next boat. You can’t help but notice all the different people. Who’s going to work, tourists, “regular” looking people probably going to an appointment or visit…and then there’s the homeless and/or mentally ill.

Having a developmentally disabled son who also has a mental illness makes me scared. Not scared of the people but scared for them. How did they end up here sitting with a cup of coffee talking and yelling to someone who isn’t there?

Did they lose contact with their family, take off and decide they didn’t need their medication or worse yet unable to afford their meds and no one to oversee them taking their meds? There’s one man I’ve seen and spoken to on more than one occasion. At first glance, taking in his clothing and overall appearance one would assume he’s homeless.  I don’t know this as fact as I’ve never asked him. In speaking to him you can tell that he has some sort of developmental disability. I immediately think of my son and get sick to my stomach envisioning him on the streets. And it’s all I can do but not panic for his future. The future where Tommy and I are no longer alive to protect him.  Logically I know Tommy and I have taken every step possible that Thomas be cared for and eventually I’ll have to school his sisters on his care so they’ll be able to advocate for him if need be. They won’t have to halt their lives to care for him, Thomas’ group home placement is permanent. He’ll be there for “life”.

So what happened with the obviously ill and disabled people I see on an almost daily basis? Did their families get exasperated in taking care of them ? Did the person run off away from family at some point? Have they fallen through the cracks of city agencies, foster system, parole system, etc…

Im sure everyone has an interesting story.