Just call me Jiji

…me, just pretending to be me ….now, where did I put that cape??

Archive for the category “Home Life”


Like my Life this Blog is UNDER CONSTRUCTION



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100 DAYS

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It’s the End of the World or is it?

It's the End of the World or is it?

Doctor, My Doctor

For Dreamers and Wanderers

This Awesome Book was the inspiration for my poem:


For Dreamers and Wanderers

I dream of carefree days, and fields full of flowers

I dream of love and Happiness; my Family and warm showers.

I dream of quiet days that are just for him and me,

Maybe we can set sail on the turquoise sea;

I dream of water slides and roller coasters

he just can’t decide which one he likes most-er

I dream of grins, giggles, erupting  laughter and red cheeks that glow

More giggles, more laughter and milk coming out you nose

Unfinished Business

I find that I have little free time of late. And when I do I am constantly trying to finish up things I’ve previously begun. If I knew how to knit I could probably make a scarf long enough to wrap around the globe twice with all the loose ends I leave dangling.  Things like house cleaning, art projects, research, photo projects, paying traffic tickets,  articles for this blog, etc.. etc.. etc..


Read more…

Hunker Down

We were told to “hunker down”, Sandy was on her way. It was going to land in Jersey, and New York was going to feel its impact.

On Saturday night to avoid Sandy’s wrath, we celebrated Halloween early at the Shyne’s. They are known in the neighborhood for their amazing decorations and interactive costumed players, including a chainsaw wielding Michael Meyers and a chef that serves brains, heart, and worms to willing foodies.

To avoid Sandy’s wrath, we celebrated Halloween early at the Shyne’s


Chef Nancy and her Roach Farm

Mmm Dessert

I am glad they decided to do it. I just love dressing up. It is what I look forward to every Halloween, and I was especially eager to try out a new make up technique I had learned. What do you think?  I am pretty impressed with myself. 🙂

On the following morning, Sunday Oct. 28, 2012,  it was time to get serious and hunker down. Sandy was definitely on her way!!

I imagine that most people  stayed glued to the local TV station all day long. I know I did. Ron helped our neighbors across the street breakdown and secure the holiday decorations that we had just enjoyed the night before.

We ran out at the last minute to pick up some water, fruit, dry goods, batteries, etc. We filled the gas tank and headed back home to watch Sandy’s approach on TV.  It dawned on me that we were taking this (warning) a bit more seriously than we had in the past.

We live in Nassau County on Long Island. We were warned that the south shore in particular was going to get the brunt of it on Long Island. The warnings made comparisons to Hurricane Irene and how this hurricane was going to be worse than that. We were to expect high winds, flooding, and power outages through out NYC and Long Island.

We’ve heard these warnings before, and not that we doubted that Long Island was going to get hit, but for the most part, because we (Ron, Leon & I) live in Central Nassau, we don’t expect to get hit as hard as the north and south shores. Most flooding happens at the shore, and winds have felled a couple of trees and knocked out some lights for a day or two here where we live, but in comparison to the damage the shore gets we barely feel it.

Last year Hurricane Irene got New York’s attention big time, and while it did hit hard, there were some areas of New York that did not get as much of a beating as was expected.

But, that morning, the day Hurricane Sandy was due to hit, the air felt different. The news reports  were much more urgent than I remember storm watches and warnings ever being in the past; evacuations were being ordered and shelters were popping up all over the place, and talk of widespread power outages were practically guaranteeing we would all be in the dark for a few days.  Recorded messages from the town came in on our phones listing items that we should keep at the ready. Yes, this time I was taking the warnings a bit more seriously.

It was a windy day from the get-go, and as the day wore on and it got later the winds got stronger. At the supermarket I watched 3 shopping carts speed past me with out a driver, so to speak. I felt the push of the wind on my back. The clouds darkened the sky, they seemed somehow heavier, like they were being weighed down. I could feel it in my body.  Then came the heavy rain (and a heavy flare-up). Lots and lots of rain.

By this time we were all safe and comfy in our home. There was nothing else to do but wait till it was over, just like we did during past  storms and even hurricane Irene. We could hear the rain beating against the house, and we heard the winds howling past us.  But I felt secure enough, after all as long as we stayed inside, the storm wasn’t going to touch us.

Then I hear Leon yell for us to “come quick; my bed and all my books are wet”. We discovered that the ceiling in his room just above his bed had a crack in it and was leaking.  Ron grabbed a bucket and set it down under the leak; what more could he do?

Leon, was distraught because now all his books were ruined. A meltdown ensued. It was clear to me that the anxiety of the storm was getting to him. Throughout the day, as we watched the news reports or listened to the radio, I discussed some of the things we might face during the storm with Leon. Leon does not like surprises or sudden unexpected changes, so preparing him ahead of time  was necessarily. But the leak was not expected at all.

 As I held him while he cried over the loss of his precious books, I reminded him that we had talked about the storm and how it could cause damages. He interrupted me with “yea, but you didn’t tell me it would rain in my room!”.

It was true, I did not tell him it would rain in his room. I did however prepare him for the power to go out, and soon after we discovered the leak, the power did go out at 6:31pm. Ron gave Leon his own wind up flashlight while, Ron and I got out the candles.

Some how with the lights out, the howling of the wind seemed louder, and the moaning and groaning and creaking of this old house straining against the 80 mph gusts of wind became more obvious. Poor Leon jumped at each new sound. Once we had sufficient light in the kitchen, we huddled around the kitchen table together. We read,and played games to pass the time and keep Leon’s mind off of the sudden noises. And we listened to the local radio station report on what was happening outside our cozy candle lit kitchen at the same time.

Every so often I could feel the house shift, it was bracing itself against the strong gusts of wind that the radio and TV news had promised. There were loud noises that came from outside. There was crashing and banging and booming sounds, and bursts of light in the sky that I mistook for lightning. I eventually learned (over the radio) that the burst of light was not in fact lightning, but transformers blowing out all around us, hence the widespread power outages.

It was getting really scary, and not just for Leon, I was getting scared too. I had never experienced something like this before. Now I was jumping at every sound this house was making too. Did I mention it is old? Yes, very old; 120 years old, old. Which means tons of creaking and moaning and groaning. And then there were the external sounds of things falling or flying or god knows what. Now I was getting anxious myself. There was a loud sound that came from the front of the house. We peered out the window into the normally well-lit street, now buried in darkness to see what had made the sound. It was like a cracking sound followed by a crashing sound. Ron went out to get a closer look. A large limb from a tree directly in front of our house had fallen down onto our gate and taken two wires that were connected to the house down with it.

Peering out the window to see what hit the house

The radio was reporting live, about all the dreadful things that was happening all around the Island and in NYC.

Hurricane Sandy Building Collapse 2012 NYC 3841

Front facade building collapse

Fire Island during Hurricane Sandy

The whole front facade of a building in Manhattan just crumbling to the ground, exposing the apartments inside, trees and electrical lines falling on homes, people who refused to obey the order to evacuate, now needing rescuing . Yeah I was getting a bit anxious myself. But I surely did not want Leon to see me shaken.

To keep from totally falling apart I felt I had to keep busy doing something. I made Ron run all over the house, collecting items to pack as a go bag, find the fire extinguishers, put the shoes by the door;  while I collected my portable hard drives and my engagement ring and wrote out ID cards for each of us detailing who we were and who to contact in case of emergency. I then made sure Leon and Ron put them in their pockets, as did I.

My thinking was if something falls on the house or the wires spark a fire, and we get separated  they (rescue workers)would know who to find for us.

….Okay so I get overly cautious when I am frightened. While this was going on in the house a few fire trucks pulled up outside the house. As I watched out the front window a fireman motioned for me to meet him at the door. When we opened the door he informed us that the wire that was pulled down from our house by the tree limb was laying across our metal fence and a fire hydrant.

We were instructed to stay in the house till it was determined whether or not the wire was live. Ron was convinced that it was the cable or phone line. The fireman said it may be, but to be sure, stay inside. If we must leave the house, make sure we had on rubber sole shoes and stayed off the grass, only walk on the walkway.

I tried getting in touch with my mom and my sister by cell phone. When the power went out, so did our home phone and internet. Our only choice for communication was the cell phone. But it really was no choice at all. There was no getting through to anyone. And if I did get through, the call would drop immediately. Eventually I got my sister via text message. She couldn’t get in touch with my mom either. I was getting worried because she was home alone. I was also kicking myself for not being more forceful about her coming to stay with us. My sister was doing the same.  Mom was very adamant about staying home. She’s quite stubborn when she wants to be.

That night I had such a hard time getting to sleep, all I could do was watch the two trees in our front yard sway back and forth in the wind and the utility pole across the street pull the wires attached to our house taut  and then slack  again.  Eventually my eyelids were too heavy and I no longer could stay awake.

The next morning, Oct. 29th  in Sandy Aftermath, our power was still out, no electricity, no heat, no hot water, no phones, and no internet. Cell phones were not getting good reception either.

We surveyed the damage outside and are thankful that it wasn’t worse. Aside from the branch taking down a wire, Sandy took a few shingles off the roof, some siding and part of the gutter.

Shingles, shingles everywhere

Down with the gutter

Branches downed

Anyone lose an antenna?

The side of our house

That’s where the siding went

The planter is made of cement & oh so heavy

One of the fences that collapsed

We checked on our friends as we drove around our neighborhood assessing the damage. It was unbelievable to see so many trees down. It looked as if they were just plucked out of the ground roots and all and left there for us to clean up. Some of them ripped up the side-walk and even the road in some cases.

These are pictures of the damage found in my neighborhood




Ron managed to get in touch with his parents on his cell. Thankfully they were safe, and they hadn’t lost electricity. While Ron stayed at home to wait for his parents to bring us their generator (insert happy dance here), I took Leon with me to see how my sister and her family were doing before heading on to check on my mom. Both my sister and my mom had also lost power like most of the rest of Long Island.  Of the three of us my sister’s home got hit the hardest, with tree branches all over the yard.

This is my sister’s home;


Even little Kiera helped with the clean up

Mom admitted that she was very afraid during the storm, but she still insisted on staying at home on her own. Before leaving her, I wanted to make sure she had a few things. I ventured out looking for a battery operated radio and batteries. Five stores and 2 hours later I still had no luck finding what I was looking for. By the time I got back to my mom’s house to deliver the bad news, her power was back on. Go figure.

  I was hot to get home before dark. It was scary enough driving from town to town with no working traffic lights during the day, I certainly did not want to drive home in the dark with out traffic lights to regulate traffic.

As anticipated our power was still out. Being without electricity, heat, and hot water is no picnic. But it is doable. It’s the lack of phone, TV or internet that had me itching to find a hotspot. We did have the radio to report on what was going on out there. But I wanted to be able to see what was going on and I hated not being able to communicate with my mom or sister. I, of course, wasn’t the only one missing technology. But, for as much as Leon complained about being bored because there was no TV or internet, we did have a lot of fun as a family doing crafts and playing games.  And the added bonus for Leon was that school was closed.

There was some worry among the kids that Halloween would be cancelled this year. The concern being that there were too many trees down and sidewalks ripped up. A group of us parents decided to get the kids all together for trick or treating keeping safety first in mind at all times. We were not going to let Sandy ruin our children’s day! The kids were happy and so were we.

As luck would have it, by the time we got back from trick or treating on Wednesday the house was all lit up. Hooray we had electricity and heat and hot water!! We still did not have phone or internet but we only need wait one more day before we were connected again. Boy were we happy to have power again.

We were one of the lucky ones. Sure we lost power for 4 days, didn’t have heat or hot water, and could not communicate with our family. But there are so many who are far worse off than we were. Far, far worse than even some of my neighbors or my sister’s family; who are still in the dark even now. We’ve been able to help out our next door neighbor by sharing our electricity via an extension cord. At least they can plug in their fridge. And my sister, brother-in-law, and cousin  are staying with my mom, to avoid the cold. Let’s just hope they don’t drive each other insane. They are lucky too.

Being without electricity, TV, internet, etc. can really isolate you from what is going on in the rest of the world. When we were without power I had no idea how bad things were. Granted we had the radio, but it didn’t sink in till I  was able to  really look at what Sandy had done.   So many people left homeless, with all their mementos and memories washed away. People have lost home, cars, furniture, clothing, everything. After seeing all of this, I know I have no cause to complain about the things that were going wrong in my life.

It is heartbreaking to see how badly other parts of New York have been hit. I feel so terrible for those people who have lost everything. I just could not imagine the heartbreak they are going through right now. My prayers go out to them.

There isn’t much I can do financially to help. But I will donate clothing and whatever else I can to help.  Another thing I can do is at least help spread the word. Please do what you can to help these people who have had there lives turned upside down. Make a donation if you can to the Red Cross and pass the word on. There are people out there who are just like you and me, who really need your help.

  Stay safe, and stay positive.

Extra! Extra! Read All About It!

Here is a (very belated) update on “Leon’s Locks for St. Judes Kids Fundraiser”.

As you may or may not know my son, Leon, had been growing his hair since 1st grade to help a child at the St. Jude Children’s Research Hospital. Four year’s later my little guy isn’t so little anymore and is going into 5th grade (I KNOW! Right?) and met his goal to donate his hair. He also has met part of his goal to help the children of St. Judes. While he did not meet his personal goal of raising $5,000 he sure as heck did an amazing job in raising over $1500. His story ran in a local newspaper a few weeks ago. You can find the story here, but please note that the link provided in the story has been unfortunately closed, we are looking to reopen the event.

We are just so proud of him. He is just such an amazing kid.

Duck Tape!!! Bigger on the Inside!

It’s Me, Jiji

It’s me Jiji;

I must apologize for my lack of involvement here this summer. Aside from our Annual July Potluck BBQ and Leons Locks for St. Jude Kids event the rest of the summer has been a bit slow going, so far. With Leon going to camp all day long and me burying my nose into every article and book, that I can find about Aspergers and High Functioning Autism; as well as looking for ways to get organized and reclaim my home, my family, and my life; it leaves very little time to do many other extra curricular activities. And for right now blogging falls into the category of extra curricular activities.

It’s not that I don’t want to write or that I don’t have much to write about, I do! It’s just that, aside from my hands burning with pain when I do write, I have had to devote my time to rearranging  some of my priorities first and to take care of me and my family.

I’ve always been a very wordy writer; with a tendency to go on and on about whatever subject it is I am writing about.  I do really enjoy writing, but because of the pain in my hands and my lack of available time; it is my intention to try to limit the length of my posts from now on.













I am looking forward to putting my thoughts and ideas done on paper… err I mean on the screen…


From One Differently- Abled Child to Another

My Wild Child

Leon is 9 years old and he has Asperger Syndrome /High Functioning Autism. He is an extremely  bright boy with big ideas and an even  bigger heart.

One of  the many wonderful characteristic of Asperger’s is Determination, and he’s got  plenty of that.  When Leon has is heart set on something, he cannot be derailed. When Leon was in 1st grade, he watched a video presentation in school about St. Judes Children’s Hospital, on that day he decided he wanted to help the kids of St. Judes, because, in his words, “I can help kids who are really, really sick” .  He then told me he wanted to cut his hair

In 2008, sporting his blue mohawk

(which was  Mohawk  at the time). When I asked him why, he said “because, I want to donate it to the ones that are bald”.

  Leon has not cut his hair since and that was back in 2008. In that time he has been teased, mocked, and bullied by other kids. He is often mistaken for a girl. But Leon takes it all in stride. He simply explains to those patient enough to listen, “ I am not a girl, I am a boy. I am  just growing my hair to donate to St. Judes Kids”.

In 2011, we found out that there was no guarantee that his donated hair would go to a  St. Judes Child. In fact it was unlikely. This did not sit well with Leon at all. He was very upset in fact. Although he knew that his hair would still go to a good cause, it was the children of St. Judes and their story that had touched his heart.

This is why he began hosting the “Leon’s Locks for St. Judes Kids Fundraiser”. It was important to him that he still do something for St. Judes Kids. Leon set his goal quite high, at $5000. We know it is a long shot but we have always taught him to reach for the stars and to believe in himself.

We worked together as a family to get donations where ever we could. His father and I reached out to our contacts via email, Facebook, and this website.  We also had cards made up for Leon to give out when the opportunity presented itself.

Leon’s Story Card

He gave them out to friends and their parents, at birthday parties, and communions. We carried them with us where ever we went. We even had a pin and a T-shirt made that said “ask me about my hair”.

Then when asked he could tell his story and give out a card. This worked out very well, because Leon did not always feel comfortable approaching people he did not know. But when asked he was always more than happy to tell his story about why his hair was so long. He spoke to people on the train, in restaurants, and we even hung out in Times Square for a while, giving out information cards.

Times Square NYC


.Both his dad and I are very proud of how much bravery and confidence he has shown when approaching and being approached by others. We love how much partaking in this, has helped him improve on his social skills, something that is greatly hindered by his Asperger Syndrome.

Being a part of this fundraiser has helped us grow in so many ways, both individually, and together as a family.

Tomorrow, July 7 2012, we will celebrate with our friends and family at our Annual BBQ that we have every year in July. At some point in the evening Leon will cut his hair for donation to “Locks of Love”. And while we  are happy to report that since Leon began this fundraiser in March 2012 , he has raised $1385.00;  we hope to continue in spreading the word and getting more people to donate to his fundraiser for St Judes Children’s Research Hospital.

Folks can donate with a credit card via this link https://waystohelp.stjude.org/sjVPortal/public/event/page/displayEventPage.do?sectionStyle=subMenuFour&eventId=310924&programId=2002

Please forward and share this story as much as possible!!

Leon’s self portrait

This is worth repeating!!

Just call me Jiji

While surfing the web I caught sight of this really wonderful letter that expresses much of what I feel  and go through. So I wanted to pass this on.

My comments are inpurple, clarifying how I feel personally about what is being said in this letter and how it pertains to me.

An Open Letter To Those Without Invisible Disability Or Chronic Illness

 … by Ricky Buchanan

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that…

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