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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.

 

 

And Poof! She’s 10.

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It’s summer so it’s time for yet another one of my kids’ birthdays. The birthdays start in April with Lelly and peak in July (Thomas, Tommy and Alyssa) and end in August with  Samantha. Samantha’s due date was July 31st with her arrival being August 1st.  When I was pregnant with Samantha and she didn’t arrive on the 31st, my sister said she wanted her own birthday month.

I won’t say I can’t believe Samantha is 10. I do believe it. Being the youngest of all my children she’s probably the one I feel most present in her life. My first 3 children were closer in age to each other and with the added stress of undiagnosed Thomas some things are a blur with the older kids. Thankfully they have great memories and love to share things that happened when they were younger. Things that I seriously don’t remember. Not bad memories, just the opposite; happy times or silly things they did and my reaction. I do wonder if it’s the meds or the stress of the past that screws with my memory.

So she’s 10. Twelve  years ago I was getting over 2 miscarriages and wondering if I’d ever have another baby. God was so good.  The biblical meaning of the name Samuel is “God has heard” so it was only fitting that I named her Samantha. God did hear me and answered yes. When I learned we were having another girl I immediately thought, “no big deal we already have experience with Alyssa and Lelly”. Ha! Samantha is not like her sisters at all. She definitely walks to the beat of her own drummer preferring video games to dolls and challenging her teachers and authority figures. Things her sisters would have no part in when they were her age. Samantha was in the principals office when she was in pre-k!  Oh my gosh I wanted to die. What the heck?? Yes Samantha is definitely her own person.

I remember after I gave birth, Thomas was 10 years old. My bff said, “OMG when Samantha is 10, Thomas will be 20!”  That seemed like eons ago. And here we are. Thomas is 20. It’s amazing how fast and excruciatingly slow time can pass all at the same time. I hope to be present for the next 10 years not just for Samantha but for all my kids. They are all amazing people.

It’s a done deal…so far

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My boy is coming back here to live in the group home we’ve looked at that is 15 minutes from our house! Last week the agency sent two workers to Thomas’ school to screen him to make sure he is a good match with the other residents of the group home. I spoke to Thomas’ social worker and she raved about him and his fantastic manners. I was so proud; I then spoke with the owner of the agency (who owns the group home) and his exact words were, “They met Thomas, they fell in love…he’s in” I would love to say I wasn’t surprised but I was. Not surprised that they would fall in love with my son, he has a great personality and is in fact quite likable, but surprised that all in all this process went very smooth.

In fact this whole scenario has God’s fingerprints all over it. If I hadn’t started the bible study group for Mom’s of special needs children and hadn’t asked Trish to be my co-leader; if I hadn’t mentioned to Trish the pressure I was under to submit to Thomas living in a group home in Brooklyn; if Trish never gave me the phone number of the owner of the agency; if I never called the owner and found out he indeed had an opening at a group home here in this borough…Thomas wouldn’t be going where he’s going.

It all starts with the bible study. A way for mom’s of special needs children to get together and glorify God while having camaraderie with other women going through similar life circumstances.  It all starts with God. The way it should be. He is first. It didn’t hurt at all that I had people from my church family praying for us, praying for Thomas to be placed in that group home. Prayer is so powerful. Praying to the God that loves us.

I have to say that I’ve seen God move so plainly and openly when it came to Thomas. I do believe that every prayer I’ve had for Thomas has been answered, not always in the way I wanted but in the way that was best for him and best for my family. His ways are higher than ours and God’s timing is always perfect. This group home placement is an answer to prayer. The timing is perfect and I know God will make way for a place for Thomas in whatever program that will be great for him after he leaves the residential school.

You have to have faith.

A Different Size

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I’ve written about my weight gain as a side effect of medication Ii take. I must take this medication if I want to stay not depressed. I enjoy being happy l; I do not enjoy being the weight that I am. I’ve always been on the slim side. Even after I had my kids I lost the weight I gained from being pregnant with them. Four times I gave birth and four times I lost the weight. I was also smoking cigarettes after I had the kids so I’m sure that helped with the weight loss.

Even so when I quit smoking I didn’t gain much weight maybe 5 pounds but that was ok and didn’t make much of a difference in my clothing size. This weight that I’ve gained had made a huge difference in what size clothing I have to buy. It took a lot for me to accept the size I am now. To stop buying clothing in a smaller size with the hope that I would lose the weight. I tried weight watchers but the desire to eat overcomes the desire to stick to a diet. So I’m not doing well on that front.

I do find that accepting my body for what it is right now and buying clothes that actually fit does wonders for the way I see myself. Trying to squeeze my self into a size or two too small  makes me feel uncomfortable physically and psychologically. In my mind I’m concentrating on how tight those pants are and how “fat” I am because the pants are tight. It creates a vicious cycle on some level.

On another level of my acceptance I’ve gotten rid of a lot of clothes that are now too small. It was not a painless process admitting I was too big for certain favorite pants or tops. Since I only buy designer at the thrift I have managed to sell some too small clothing on the bay for a nice profit so that has been nice.

The most difficult part of accepting this new size of mine had been this summer. You can suck in your stomach and instantly feel slimmer but you can’t suck in an upper arm and I refuse to give up tank style tips and dresses. I will still take photos but I *really* don’t like the way I look in them. But…I don’t want my kids to look back and wonder why I’m not in any pictures with them. The beach has been another frontier. I stick with a basic one piece or 2 piece tankini that covers all. I do go in the water with Samantha (she loves riding the waves). I refuse to let my insecurities keep me on the sand only; besides you see all different sizes and shapes at the beach.

My husband has been wonderful, never once has he made any kind of remark about my weight. He does tell me how happy and content I seem and that makes him happy to see me that way. He gets annoyed when I put myself down and tells me I look fine. He’s sweet and I love him.

 

Worship night

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Last night I had the privilege of seeing Worship Night in America presented by Chris Tomlin at Madison Square Garden in NYC. Oh. My. Gosh. It was amazing. Truly amazing. I get goose bumps talking about it and reliving it all over again. All the artist he had lined up were so, so talented and so very dedicated to serving our great God. The special guests were Louie Giglio who preached a very moving session on traveling “the 20 inches” between our knees and the floor to pray for our nation. This man had all of Madison Square Garden on our knees and praying, very moving and oh so powerful. Max Lucado was another speaker he was so wonderful reinforcing how much we are loved by our God that we should let Him love us; we can call our Heavenly Father just that “Father, Abba, Papa” because He loves us so.

The musical artists were, Matt Redman, Matt Maher, Phil Wickham, Kim Walker-Smith (whose voice was incredible with all the jumping and dancing she did and never once faltered), Bryan and Katie Torwalk, Stephen Curtis Chapman, Tasha Cobbs and the very talented DJ Promote. When Tasha Cobbs took the stage to sing “There is Power in the Name of Jesus” she had the whole Garden mesmerized and singing and worshiping with her, I wish I could describe the feelings she provoked in her performance. The only thing I can do is link her performance of the song https://www.youtube.com/watch?v=-pD2zIuiC2g  She sings from her soul.

Chris Tomlin performed his hit “Good Good Father” https://www.youtube.com/watch?v=CqybaIesbuA. He had everyone singing and worshiping. Honestly all the performers had us worshiping the one true God, our Lord and Savior Jesus Christ. I haven’t been this moved at a concert since I can’t tell you when. I felt filled with the love of Christ, something I feel is desperately needed in our country. To feel that love and to know it is finished, we’ve been ransomed and paid for by the blood of our beloved Savior.Another song was “How Great is Our God” also by Chris Tomlin https://www.youtube.com/watch?v=KBD18rsVJHk. Matt Redman did not dissapoint with “10,000 Reasons” https://www.youtube.com/watch?v=XtwIT8JjddM

I can’t recall every song that was sung last night but they all prompted you to jump up from your seat, raise your hands in worship and surrender your heart to our great God. f anyone reading this has the chance to see this awesome concert I urge you to go and be prepared to be moved by the power of God, our Lord and Savior Jesus Christ.

Doing more

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I’ve been thinking about my job lately.  I really like what I do but I’ve been wondering is there more I could be doing with myself? This job right now is part time. I wanted more hours and I was given a few more hours, but now I want even more. What do I want to do?  Stay in nursing for sure. This is coming from  someone who for years stayed as far away from that profession as I could.  It is what I was trained to do all those years ago and it is what I’m more than likely to get to get a job as. I have no desire to return to school and be trained for anything else.  I have changed. I’m no longer the anxiety riddled mess I was years ago. I have more self confidence. I don’t feel like I am hiding from being a nurse anymore.

I truly believe God has a plan for me. I’ll be praying for guidance and direction. And he won’t let me down. The most difficult is waiting on His timing. God’s timing is often different than ours but His timing is best.

I’ll soon be on the hunt. The upside is I’m enjoying what I’m doing while searching. Not a position I’ve seen myself in often.

Time flying

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I think about how fast time flew by while raising my children, well still raising 2 and will always be a guardian to one. My Lelly is 15 years old.  She was my “baby ” for the five years between her and Samantha. It’s funny because even after I had Lelly and things were so, so frantic with Thomas undiagnosed I didn’t feel “done”. If anyone asked I always answered that I’d have another. Then I would get the side eye glance but I didn’t care. Don’t ask if you don’t want an honest answer, not that it was anyone’s business anyway.

So anyway time flying by…I see and meet so many first time moms and young families at my work. Of course I remember myself in their shoes and I didn’t believe anyone who said “enjoy them… time goes by really fast”.  I distinctly remember when Thomas a baby and I wanted time to stop. I enjoyed him as a baby so much maybe because he was our first? Probably.  Before the crap hit the fan with neurologist visits, moulding helmet fittings, MRI’s, early intervention, physical therapy, etc… Our life with Thomas was incredibly sweet. He was a great baby, he smiled a lot, napped on schedule and was all around an easy, happy baby.  I knew I wanted more kids after him.

So here we are 20 years and 3 more kids later. The magic of being that young family long gone. And that’s ok. I do like our life now. My husband and I communicate better now than we did in our younger years, my kids are for the most part independent; Samantha being almost 10 is busting out to be as independent as we will let her. Now I feel totally “done” and I’m enjoying this stage of of life. I have no desire to go back to the days when my kids were young. Being on that roller coaster once was enough.  Being so “done” makes me enjoy my job all the more. I get to see these little babies, sometimes hold them, most times coo and talk to them and enjoy toothless smiles and then give them back to their parents or wave goodbye after we’re finished.

I like the young families I get to visit with. I do tell them to watch out because time does go so fast. They nod as I nodded way back then not fully understanding that time will fly and fly fast. That that baby they’re holding will grow up in what seems like it’s taking forever some days and other days your head is spinning with the quickness of it all. There have been a few times at work I’ll stumble upon a special needs mom and we immediately bond. That is by far the coolest I’ve ever experienced. I know for that moment I’m in the midst of the planning that God made possible.

 

 

 

 

 

My own little world

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We celebrated Alyssa’s birthday the other night by going out to dinner at a local family owned Italian restaurant. After dinner we walked the boardwalk of one of our local beaches. It was Tommy and I, the girls and Alyssa’s boyfriend, Sam. We had such a great time and it occurred to me that I always wanted our family to be almost it’s own entity. Our own little universe and world. The other night I realized I’ve got what I always wanted, or rather I’ve always had what I always wanted. My world begins and ends with my family. This is the way it should be.

I think back to when I was younger I didn’t recognize this wonderful group of people as being my whole world. I felt claustrophobic in dealing with Thomas’ issues and the way he was. I wished for a more “normal” family/world. I was envious of other families and wondered why was mine the way it was?  I never looked to change the girls, they were wonderfully typical (by girls I refer to Alyssa and Lelly, this was before Samantha was introduced to our world). I was fortunate that I found a wonderful online support system to help me with Thomas. And I’m even more fortunate that I’ve been able to meet just about every single person of that support system in person. Most recently, I had lunch in Manhattan with my dear friend Wendy who was in town from California.

I believe our “worlds” are fluid. People moving in and out. Even family members choose to drift out much to our disappointment. However, I don’t often believe the fluidity to be intentional. People move in to our lives/worlds for an amount of time and they move on. The only constant in our own universe consists of the core and we all know who our core are. The other night on the boardwalk I felt like we were our own bubble of family. Minus Thomas. The times I feel the most complete as a mini universe is when we’re all together. And I look forward to him moving to this group home so we can be complete more of the time.

 

Work and “the city”

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I was in the city yesterday for work. I had such a great day at work. I met really nice people and the babies who came in to get their ears pierced were adorable and each did really well with the procedure. One family even brought me the most delicious piece of crumb cake sealed in a plastic single serving container. I just looked at them wide eyed and said, “No way…Thank you!”. They were a great family besides the cake, very down to earth and they loved cracking jokes.

I love being in the city. I love the anonymity you have walking down the street. I’ve been thankful that I’ve had nothing but uneventful visits to Manhattan except this one time last week when I was walking from the R train to the Ferry Terminal. I had a sweater thrown over the opening of my bag. This guy on a bicycle came flying by; caught his handle bar on my sweater and then he flew over his bike and did an awesome tucked up somersault to the ground. It was as if he had lessons on falling off his bike. Someone screamed, I froze and watched the whole thing. I asked the guy if he was alright (he literally jumped back to his feet after the somersault) and told him he was caught on my sweater. He said, “Well…it’s very windy out” which it was but still… He said he was fine and we were both on our way. Definitely odd and eventful.

I really don’t mind the commute to the city for my job. I love meeting people from literally all over the world. NYC is definitely a melting pot. I’ve met so many parents from many different cultures and their children are simply beautiful coming from such an array of backgrounds. I’ve also learned and/or picked up on how different cultures act towards each other and their children and that’s interesting. Nothing bad or adverse, just different depending on the culture. When these parents meet me it’s for a specific purpose and I’m kind of chatty so I’ll get them talking too most of the time. There are quite a few first time parents who are so nervous my heart goes out to them. I remember being in their shoes.

I’ve applied to quite a few part time jobs. I don’t necessarily want to leave my job I do like it there and I really like my boss. I simply want more money. I would love even more hours at this current job even though have been given another day. I have a suspicion that I’m exactly where God wants me to be right now. I’ve heard nothing back from over 10 jobs I’ve applied for. Maybe my resume needs a tune up, yes I’m sure it does.

I go back to work in a couple of days. Hopefully this heat wave will break and my commute will be even better with great weather. The ferry is always breezy being on the water, the subway platforms on the other hand can be quite brutal. Even so I still don’t mind. I get to visit and walk the greatest city on Earth and be a part of the living breathing population of NYC.