Just call me Jiji

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

Archive for the category “Parenting”

SEEEEEE!!

We’ve just had an extremely busy weekend, so I haven’t had a chance to give an update until now. But I really didn’t want any more time to go by with out takeing moment to say a great big  Thank You to Gail Roca of  The Kids Kloset for allowing us to fund raise at their 2012 Nassau Spring Event.

Leon is thrilled to say he raised $502 this past Friday thru The Kids Kloset bringing his total so far to $1362. His response to the total funds raised thus far, was “SEEEEEE I DID make it to $1000, and more!” .That was in reference to my comment to him after he told us his goal was $5000, which was, “Leon that’s so high, you’ll be lucky to even reach $1000.

I am fairly positive that this won’t be the last time that this child proves me wrong!!

I am one proud Mama!

Thank you Gail and The Kids Kloset

Just Call Me Jiji

I’ve changed my look…

Well not my look, but the look of my blog. I wanted to go with something a bit more user friendly.

And with the changes comes a new name for my blog……   “Just Call Me Jiji”

~me, pretending to be me. ~now, where did I put my cape?

I discuss my life, my family; the issues we face, the things we enjoy doing as a family, and the things I enjoy pursueing by  myself

With this new look, you, the reader get to go straight to the content you are interested in.

This is what I write about and why I write about it.

My Home Page – All posts in chronological order starting with the most recent. My blog tells my story and the story of my family; warts and all!

Hello World – About me, this is who I am, or at least who I try to be.

Disabilities and Special Needs – I discuss those disabilities and differences that we, as a family face on a daily basis; and the treatments and accomidations that accompany them.

  • ADHD – My son Leon was diagnosed with Attention Deficit Hyper-Activity Disorder-combined type, at the age of 5. It has severely impacted not only his life but both his father’s and mine as well. I’ve learned a lot from my little boy, and I suspect I too was born with ADHD. At this time I still remain untreated, but I am working on that.
  • Aspergers/ Autism –  At the time of this writing, it has been 6  weeks since Leon was diagnosed on the Autism  Spectrum with Asperger’s Syndrome (AS). This is is my first mention of it on my blog. It    has taken me this long to let it sink in. I am sure there will be many posts on this topic to come, because as of right now I feel as if I am starting all over again. I am a newbie again and have a lot to learn.

  • Comordids –      
                         …Oppositional Defience Disorder (ODD) – Along with Leon’s ADHD      diagnosis he also recieved a diagnosis of O.D.D, and boy is he ever. His defiance aside, my strong willed kid with some pretty strong convictions.
                         …Sensory Processing Disorder (SPD) – Leon has always presented with sensory issues. I have long suspected that he has SPD, and have written about it in the past. Now, with his new diagnosis of Aspergers, it makes a whole heck of a lot more sense.
  • Fibromyalgia (FMS) – I was diagnosed with fibro when I was about 28, although symptoms were present much earlier than that. It’s been a rough road, but I keep on trekking. As much as I hate reporting that which is so negative, it helps to get it all out.
  • Treatments and Medication- When it comes to my own health I am not as diligent as I should be, and for that I do often pay the price. But when it comes to Leon’s health I am a stickler for staying on track. I am well familiar with the old adage that states; to care for others, first one must care for one’s self. That is much easier said than done, but ultimately I aim to get healthy not just for Ron’s and Leon’s sake but for my own as well.
  • Special Education – This has got to be my least favorite topic, but when raising a school-aged child with a disability, it becomes one that often comes up. I have had my fair share of Special Education meetings, both good and bad. If I can pass on some helpful information that may potentially help other parents I am happy to relive some of my experiences here.

DIY – I’ve always loved using my imagination and being creative. I love the feeling I get when I see something and think, ” I can do that” or even, ” I can make something out of that “. It’s taken me a long time to amass some measure of confidence, but I am ready to admit I do have some talents.

  • Crafts – Drawing, Woodwork, Glass painting, Digital Scrapbooking, Clip Art, Costume making, and more
  • Party Planning – I love, love, love planning parties and making the Holidays Special. Give me a theme and I will make it happen.
  • Photography- I have always loved the art of photography. What I lack in technical skills I make up for with my eye for photographs. The thing I love most about photography is the ability to recall so many memories from a single photo.
 

Home Life – For me, home life means family life, after all, home is where your heart is.

  • Family – the  main characters in this blog are myself, my husband, and our son. In our house, it is just the three of us; but in our family there are so many more.
                              ...Just Jiji – Jiji (Gee-gee) is the name my precious niece gave me when she was just learning to talk, I enjoyed hearing her say it so much, it stuck. More info about me can be found here
                               …My Superman – My husband of over 10 years now, is every wish, I ever made on a star, come true. He is every prayer  for a good and happy life, I have ever prayed, come true. My life; the one I truly love living, despite it’s upheavals sometimes; begins and ends with him.
                                  …My Alphabet Boy – My son with his AS/ADHD/ODD/SPD/L-M-N-O-P  is the greatest gift in my life. from him I learn how to be me. I thank god for him every day.
  • Parenting – Being a parent is the hardest most gratifying job in the world, and the most important.
  • Holidays- just as much as I enjoy planning parties; I love planning for the Holidays and celebrating with family.

Travels – I love to travel! And I especially love to plan our trips. I get a little high off of finding great deals and planning out little side trips. We love amusement parks; especially ones that we can get wet in.

  • Disney World – I love me some Disney!! If I could I’d go every year. I’ve had a few trips that I still have yet to turn into a trip report
 
  • Theme Parks – Leon’s love of water parks started with Sesame Place in PA, and now we make sure to hit a theme park or water park  at least once a year.
  • Other Destinations – As much as I’d like to make Disney our annual trip destination, our finances (or lack there of) always get in the way. But we always make it a point to go somewhere, even if it is just a weekend road trip to PA.

Just For Fun –  

  • My Favorite Things – ever come across something and just want to share it with everyone cause it’s “just so cool!” ? Well this is where I do that. Well here and on Pintrest
  • Slideshows – Just some pictures I’ve shared over the years

This child was a gift in my life, and all I want for him is the gift of a truly happy life. Is that too much to ask?

When I think of my one and only child; and I picture him in my mind’s eye, the first word that comes to me is BEAUTIFUL!

Yes, it is true, he is a looker, but that is not where his beauty lies. It comes from his heart and from his mind.

His beauty stems from his sensitive soul that can see another child in need of some thing; that drives him to attain that same something for another child. His wonderful heart that has devoted 4 years of his life to growing his hair out because he saw a little girl in a St. Jude Children’s Hospital video openly express her hope that someone would donate hair so she could have a wig.  In his brave heart that has courageously endured the taunts and the teasing by some of his peers, as well as being repeatedly and mistakenly referred to as a girl, by strangers. His caring heart and sensitive soul that loves all living things so much so, that spiders are not for squashing, they are for setting free outside in the yard.

His beauty lies also in his wondrous mind that is so much smarter than his dear old mother’s; his mind, that captures the ear of those around him with words that would otherwise belong to someone much older than him. It is in his beautiful mind that imagines the most wonderful possibilities; and gives birth to ideas that other 9 year olds would not of yet conceived of. His mind that is so analytic and technical  and literal that he surprises and intrigues most adults around him. His mind that I am told is gifted with an IQ in the very superior range, that should be enriched and encouraged to grow in knowledge and interest

Image

When I think of my little “Alphabet Boy” with his ADHD/ODD/SPD/LMNOP, the second word that comes to mind is SAD!

This child with all his exuberance; wicked intelligence; and killer smile should not be this unhappy with life or with himself. But he is. This beautiful boy with his gifted mind and his beautiful and sensitive heart is also a very sad and lonely little boy, and it breaks my heart into a billion little pieces.

He is not like most other 9 year olds. He’s different, and quirky, and weird. I have often said he marches to the beat of his own drum. He is as  unique, as an individual can be. And I love him in all his uniqueness. But I weep for him too. Because his differences make him feel so badly about himself.

 

Recently, we have had so new revelations about Leon and what makes him the way he is, Hopefully we can find some answers, and perhaps show Leon how to love himself as much as we love him.

What can you make with fishing line, crazy glue, and scissors?

Well, probably a lot of things. But what Leon made was a messy and chaotic morning!

English: A pair of kitchen scissors.

Ron has gotten plenty used to dealing with Leon in the mornings. While I sleep through it all.

But today woke up to Ron yelling and Leon screaming. From what I could make out, Leon was not staying on task and Ron was getting frustrated over …all of it(?).

So I stumbled out of the bedroom to see if I could give a hand. What I witnessed was Leon in all his …ADHDness! And Ron cleaning up after him with steam coming out of his ears!

I recognized this scenario right away, it is  the same one I deal with, when Leon gets home from school. But I also saw something else… a reminder. A reminder of what can happen when Leon is left up to his own devices. He really does need supervision when he isn’t at his best. Which translates to; when he is off meds.

My first question to no one in particular was, “has Leon had his meds yet?”

Ron answered “not yet!”, with a huff.

I sat down next to a very fidgety Leon and placed my hand on his shoulder, and reminded him to “Take a bite”, he did as I said as he yanked himself away from me. There was too much left on the table from the night before. I took a toy out of his hand, “BITE”, I reminded him again. He grabbed for the next closest thing as he took another bite. I held my hand out, and he knew to place it in my hand, which he did with a slap. It’s too early to correct his behavior right now, besides it would only escalate things. He started to reach for something else, but I got to it before he did; “take another bite”. “I AM!!!” he screamed.

I look at Ron and he answers my puzzled look with, “Did you leave out the fishing line last night?” as I watch him follow and collect the invisible string from all around the room, over chairs and in between chair legs and all around the table.

“I don’t think I did?” was my response. He tells me, “It is everywhere!”, he was NOT happy.

I grab Leon’s wrist as he tries to lunge for yet something else at the other end of the table, “EAT”, I say, and then, “Leon where did you get the fishing line?”

He  says “the drawer on your desk was open“.

I get up and check my desk drawer, which is indeed open and my eyes widen. I think, Oh Crap, and I say, “Leon what did you do with the glue?”, as I realize the lid had been removed from the container that I keep all my super strength glue hidden in.

“Nothing!” he says angrily, and then in response to my stern look, he said, “It doesn’t even work, it’s empty”. So I ask, “well what were you trying to glue?” and again in his angry voice he says, “Nothing, I was just trying to glue a bookmark into my book”, “but it didn’t even work the only thing that got glued was my fingers, but don’t worry I eventually got them unstuck.”;” Wow that must have been scary”, I said. His response was. “I was a little scared, ….at least now I know why they call it CRAZY glue”

I almost laughed, but I kept it in as I went into his room to survey it for any damage and I pick up the scissors on the floor. “so, what were you cutting?” I asked, as I looked for things with holes in it. When Leon gets a pair of scissors in his hands he loses all sence of reason. I worried that it was the bed sheets again or the clothes strewn across the floor. He casually said, “nothing, just my cards.”  I look on the floor, yep, there they were, all cut up into tiny little pieces.

I realize he is out of his seat and standing in his room with me, “Leon, did you finish your breakfast?” He runs back to the table, and starts to shovel the food in his mouth like a madman.

I should be correcting him, telling him to take smaller bites, and to sit in his seat instead of standing there leaning over the table. But I don’t, I just think to myself – eh, at least he’s staying in one place and eating. …and if he choke’s I am right here to do the Heimlich. Then I wonder to myself hmm, do I even now how to do the Heimlich?

Didn’t matter in the end. He was done in a flash and on his way.

I watched him, hop around on one foot and then another. He was worked up, but for no other reason than he just had to move. And move he did. And jump, and twist, and flail…

…and when I see him like this, I know, “he’s just getting his Flutterwackin on” ;

Yup it’s Leon in all his ADHDness, alright. And then some.

I try getting him back on track, and ready for school. He just lashes out! He’s angry, and frustrated, and the tears start to fall.

I get it. He feels like we are on top of him, smothering him, trying to control every action he makes… and the truth is, we are. We are because we have to. We are because if we don’t, it won’t get done. We are because at this very moment he just CAN’T. We are because it is a school day and we have to get him ready for his day, feed him, get him dressed, give him his meds and get him out the door and on the bus so he can have a good day at school. It sounds so simple but it’s not. It’s exhausting…. and a little sad.

The sadness comes after he’s gotten on the bus, it comes when all I can think is thank goodness that’s over (now I don’t have to deal with his ADHDness for at least another 7 hours).

The good thing is, neither does he or his teachers for that matter.

That’s when I realize it’s his teachers that always get to see him when he is at his very best.

After such an exhausting, stressful, anxiety provoking morning,that’s enough to make me jealous and then I think, Thank Goodness for weekends!

Ahhh, just another ADHD conversation.

Me: Leon!!!! Why is there a bath towel STUFFED into the toilet bowl!!!!!!!

Leon: What, it’s not my fault! I dropped my glasses in there!

Me: !@#%@#!!!

Ahhh, just another ADHD conversation.

He's just lucky he's so damn beautiful

Today’s To Do’s

Find Christmas Lights and put them up

Get started on making the house more festive

Make a visible dent in the computer room (desk top and file cabinets)

Blog a bit

Put paperwork in order for Special Ed Meetings

Write note to teacher re: Leon’s checklists

Make returns to stores

Be happy with what I have accomplished today, and start again tomorrow.

 

 

I have so much I need to do. So, so much. So much that I have just been tripping myself up just thinking about it all the time.

This year has not been kind to me (that post is coming soon). It’s as if my life was involved in a 10  car pileup. One thing went wrong, then another, and another, and another, and so on. And detangling it all is a mess in itself. I would get so over whelmed with the enormity of it, that I would feel road-blocked and paralyzed to do anything. I just never knew where to start. Anything that I did start would be dependant on something else getting done first, and getting that done would also depend on another thing happening and so on and so on. I just did not know where to start.  So in the end I mostly ended up doing nothing and the pile-up would just keep getting bigger and bigger and bigger and so on. And there I was trapped somewhere in the middle of it all just getting more and more depressed over what a failure I am as a wife and mother and even at taking care of myself.

I’ve always been a list maker, and that has usually worked for me. But this year somewhere along the line I lost my way. I would get stuck on making the list and never actually get to the work truth was the lists wouldn’t be made up of 4 or 5 things to get done it would be 4 or 5 pages of things I still haven’t done. Eventually I just stopped making the lists all together, again because of the enormity of it all. I felt like I was failing at life.

At some point you can either give in and become a hoarder or you have to get a plan to get things done.

I had a plan to get a plan. But I  wasn’t sure what that plan was yet or even where to look.

I finally found one I want to give a go at, in a hot tub, at the base of Hunter Mountain, just a few weeks ago.

I was enjoying a soak in the tub with a few friends and a few drinks during my brother-in-law’s wedding weekend in the Catskills. We got to catch up with friends we hadn’t spent time with in a long time. The wedding was a blast and I walked away from that weekend with a new plan.

Melissa is the one who told me about a book I should look into. I was drunk that night so by morning the details were a bit hazy. But what I pieced together from our conversation was that it had something something something to do with seven somethings or other, in which you decide who you are, and who you want to be, and what you want to accomplish and then you assign a priority or a percentage of your time to it or something like that, …I think?

It went something like, what percentage of who I am is a wife, a mother, a blogger, PTA volunteer, crafter, etc… and then assign a percentage of your time to that part of you and work on a little bit of each part of who I am each day. So like if I am 50% homemaker and 25% crafter and 10% blogger, the time I give to each of those things should be divided accordingly. This way I can start making a dent by freeing myself up a little bit more each day in all the parts of my world that are important to me, including the parts that wants to do more than just clean house and chase after what I haven’t gotten to yet.

I was drunk at the time, so I could have gotten it all wrong but I did get something out of it that makes sense to me. At the time I thought she was referring to this book which I had read about previously (but I never actually read the book itself), and I had already put it on my universal wishlist.  I later learned via a Facebook convo with her that she actually meant this book, which also looks like a good read. I haven’t read either book as of yet, but they are both on my wishlist now and I do plan to read them when the avid reader in me jumps up to a higher priority in my life.

So while I am not following any specific magic formula as of yet on how to get things done, I was inspired by what I had learned from my friend to come up with a plan I could actually follow. For this plan I need to set priorities and assign a specific amount of time in my day to each of these priorities. And just get done what I can in the amount of time I give myself. And I also need to allow myself to be happy with what I have accomplished for the day and not wallow in the muck of what I still have to do, there is always tomorrow.

So, Melissa, if you are reading this, thanks for the info, and the kick in the pants to getting things done.

Now excuse me while I go look for the Christmas lights.

 

 

 

 

 

 

 

Nine Years Old and Already Breaking Hearts

A couple of days ago Leon came home from school and I could tell he wasn’t himself. Well not his, get off the bus and get the homework done right away, to get it out-of-the-way, so he can watch TV and play, self.

His ODD was in full force and rearing its ugly head. Everything was an argument or a fight, he asked for things he knew I would disagree to and then would have a huge fit when he would hear the word no. He lashed out, got fresh, and as a result he had to suffer the consequences of his actions. The consequences in this case being no video games for the rest of the day, including his newest addition to his collection; Skylanders.  He had just gotten it for his birthday the week before and was becoming obsessive about it. I felt he needed a break from it. Which he did. But the storm that came after that, resulted in a huge temper tantrum. There was yelling and crying, and screaming and runny noses, and soberly “i hate you’s”, and “i hate myself”, and “i just want to be left alone”, and screaming into pillows, and pinching and scratching at himself, and me grabbing a hold of him in my arms to cradle him and love him and keep him from physically hurting himself.

Phew! I see more and more of myself in this child every day! Memories and things long forgotten and tucked away in the far back of my mind. And now as I watch him go through so many of the things I went through in my own childhood (things that had made me feel “wrong”); and now to see him go through it, and not know how to deal with the intense emotions that come with it,  just kills me. I only hope that I can parlay my understanding and feelings to him based on what I have already gone through and cushion the blow even just a little. Let him know, he is NOT alone, there are others who understand, who get it, who have the same difficulties and differences.

This poor child carries the strain of always having to restrain and keep in check his natural ADHD impulses to do his own thing, his own way, while he is in school all day and for just long enough after school to get his homework done. The meds that he is on helps him to do that, and for all intense purposes work great, but some days are a bit more challenging than others. Sometimes the smallest monkey wrench puts a crimp in his day and throws him completely off course. It could be anything, maybe his schedule was unexpectedly interrupted, maybe he isn’t feeling well or maybe someone said or did something that he just can’t get off of his mind. What ever it is, it can cause the storm described above…

and below….

Leon: MOM! I am having a REALLY bad day! All I want is to come home and relax by playing my new game and you won’t even let me, And I am just really really stressed (pleading now, with tears running down his cheeks) PLEEEASE let me play with my Skylanders I just need to forget today happened!! Pleease!!! I DON’T WANT to go to fencing, I just want to RELAX!!! and I can’t do that if I can’t play my game!!

ME: (cradling my poor sobbing little boy whose trying desperately to sway me into changing my mind about taking away his video game privileges as a result of consequential behavior) I know you are upset, Leon. I am sorry that this hurts your feelings, but you know the rules if you get nasty with mommy you lose certain privileges and telling me you feel too sick to go fencing but just fine to play video games is not going to cut it.

Leon: I’m sooorrrrrry! I won’t do it again. Pllllllleeeeeeaaaassssseeee can I play my game. I had a bad day and besides I got some bad news at school and I am stressed about it! I just neeeeeeeeeed to playayayayay my GAME!

ME: What bad news? Do you want to tell me about it.

Leon: I just don’t want to talk about it OKAY!!! (screaming) Just let me PLAY!!!!!!

ME: eh, there is that tone again. (remaining as calm as any parent who just wants to strangle their beautiful child can)  Lets just try to stay calm and talk things out and we can see were we go from there.

Leon: If you knew this bad news you’d know why I am so stressed!

ME: So tell me about it

Leon: I don’t want to

ME: Okay you don’t have to tell me. But I am a little worried, can you tell me if it’s bad news about you?

Leon: no

ME: is a teacher involved?

Leon: no

Me: a friend?

Leon: yeah…

Me: did someone get hurt or sick?

Leon: no it’s not like that, it’s, it’s it’s just to horrible to say, I’ll write it down.

Me: (a little concerned now…. takes the folded up paper from his hand – reads his scribble and…..) (SMILE) Leon, is this what is upsetting you so much?

Leon: yes!

The note says: ” _________ has a crush on me! (It’s shocking!)”

ME: (inner voice) AWWWWW how freaking cute!!!!!!!!! (outer voice) This is flattering news, it should make you feel good about yourself. _____ is a very nice girl and she obviously has good taste. Don’t look at this as a bad thing, think of it as a good thing. I thought you liked ______.

Leon: I do! but I don’t want a crush, I want a friend!!!!

ME: All you have to do is just tell her that.

We talked a bit more about how he came to this knowledge….

Leon: Her friend came and told me, and then _____ said she was too embarrassed to tell me herself.

ME: what did you say?

Leon: nothing, I just fainted!

Ah the complexities of a fourth grader.

Today he came home in all smiles, we talked a bit before my bronchitis sent me back to sleep and he had a very nice evening playing with his dad.

I had asked him if he had spoken to ______. 

Leon: yeah, I told her that I didn’t feel the same way about her, and I asked her if we could still be friends. and she said yes.

Alls well that ends well!

I just hope ______  is okay! I mean who can blame her? My kid has always been a looker…… 

and he is an AMAZING KID to boot.

“I LOVE my Feral little child.”

Early in the morning through bleary eyes, I peer out across the sun lit room at my child, and a grin slowly forms on my lips as I think to myself;

I LOVE my Feral little child.”

Sitting cross-legged on the floor wearing only his PJ bottoms, with his fuzzy blanket draped around him like an animal skin of sorts, with his long, wild and crazy hair all messed up and draped over his shoulders; he really does look like a feral child!!

He looked back at me, and I fully expected him to say “Me Leon, You Mommy, Me hunt and gather food, You wait here.” instead I got “Mooooom, I am huuuuungreeeeeey!” To which I replied, “Me Mommy, me tired, go now, ask your father to forage for food”; his reply … “you’re weird!”

Yes, yes I am!

I later opened up my laptop to look up the meaning behind “feral child” , I wanted to be sure I was thinking of the right word. Wikipedia not only spit out the meaning, but provided a picture in example as well:

Oh look!! It’s a picture of my very own sweet child!

It looks just like him!!!  At least I think it does.

It’s fitting though, and not just because he looks like a feral child with his hair all tangled, and mussed up, going in all different directions. But also, because he is a wild child at heart. And I mean that in the best possible way.

He certainly dances to the beat of his own drummer. As I’ve often maintained, he is a strong-willed child with a mind of his own, and once it is made up there is no changing it.

Such as it is with his long luscious locks, which I am happy to say, we have learned to tame (somewhat anyway).

He made up his mind to grow his hair long just short of 2 years ago in January of 2010, I remember the date because I blogged about it here.

It was late in January when he came home all excited about doing the Math-a-thon to raise money for St Jude Children’s’ Hospital and helping other kids his own age, who were sick with cancer. It was on that day that he asked if he could donate his hair to the kids at St. Judes. When we told him he would have to have a lot more hair than what had just recently grown out from his mohawk, he said he didn’t mind at all.

Leon in Disney sporting his blue mohawk

Leon's Hair as it was the day he came home and declared he was donating his hair to a kid like him with cancer

I also told him that it would probably take him a few years before he would have enough to donate. It didn’t phase him one bit. Both Ron and I  were pretty proud of him for wanting to do this, but we also thought it would not last. Boy were we wrong. It’s been two years and he still has an inch or two more to grow before he can donate it. Despite being picked on and teased in summer camp, and consistently being called a  girl by strangers, he is more determined than ever to reach his goal.

We’ve come a long way….

   He is such a beautiful child, it is no wonder strangers call him a girl

In the end it will be so worth it. And that long hair suits him, it suits his personality. And yes he does occasionally look like a feral child, possibly raised by monkeys. It was after all just yesterday that I caught my wild little child in the act of standing on his chair in the pizzeria attempting to swing on the lamp that hung above his table. But no matter how wild my little child gets or looks, he will always be MY little wild child!

“I LOVE my Feral little child.”

I Nominate; My Superman

I recently found this on  ellen ;

Nominate the Amazing Person in Your Life…

Do you know an amazing person who could use Ellen’s help? We want to hear about them! Tell us all about the most deserving person you know, and how Ellen can rock their world. Maybe it’s a family member or spouse who always puts your needs before their own, a neighbor who has changed your community for the better, or even a teacher who goes above and beyond with your kids. This season, Ellen’s gonna keep giving back!
Read more: http://ellen.warnerbros.com/show/respond/?PlugID=433#ixzz1RH3DUlaq

So I decided to nominate My Superman!

Dear Ellen,

I love you and I love your show. You and your show always make my day! You are just so genuine, with a hugely generous nature. You have a way of making people feel comfortable and at ease; like spending time with a really good friend.

Well good friend, I’d like to share something with you about my family, about my husband in particular.

His name is Ron, he is a handsome devil, a smooth talker with an odd sense of humor, a sci-fi geek, who rocks my world, and keeps things balanced in our lives. And he is the most giving and amazing man I know. He always puts the needs of our family before his own.  When I met Ron, he became the man who renewed my faith in hope. In short he is my Superhero.

My family consists of Ron (39), myself (42), and our son, Leon (8)

We have a good life, NOT an easy one, but a good one, because we have each other. Things have always been tough on us financially, and we always seem to muddle through whatever life throws at us, either on our own or with help from our extended family. And for this we have always been truly grateful.

We all do our best to make the most of our lives. But no one works harder than my husband to provide and take care of our little family. I try and do my best too, but I have so many limitations, that I fear he often gets the short end of the stick.

Both my son and I suffer from disabilities that require regular doctor visits and a lot of very expensive medication between the both of us. My son has severe ADHD/ODD and I suffer from Fibromyalgia. We have a HUGE deductible on our medical insurance and given our individual medical needs it is necessary for us to come up with a LARGE sum of money in a very small amount of time at the beginning of each year. He barely makes enough money that we can usually get by living paycheck to paycheck with just enough left over to cover and enjoy the little things like the movies or Cub Scout fees for our son.  But when the big bills come in, that’s when we really struggle.

This year, so far, has really tested Ron’s limits.  Ron’s car died, and while we managed to get by with only one car for a few months we did eventually have to buy a second used car, which is already in need of repair.

In addition to our financial stress, Ron has had to take on additional parenting duties, above and beyond all the amazing things he already does with and for our son, due to the decline in my health this year.

No matter what comes our way, Ron does everything he can to make things right again. He really is a good man, and he puts his all into everything he does. As a husband he is just amazing, not only does he work hard in the office every day, but he comes home to take care of a majority of the household duties, when I can’t, due to my disability; and he still makes time to be a Den Leader in Leon’s Cub Scout troop and spend quality time with him.

Lately though, it seems as if life has really been testing Ron’s limits. My husband’s normally optimistic outlook on life seems to be dimming. Right now, Ron feels as if we just can’t get a break and that everything is getting thrown at him all at once and he just can’t get ahead. Some days I look at him and he just looks so terribly defeated, like someone had just drained him of all his energy. It kills me to see him this way.

This is a man who truly deserves a break. Not only is he an amazing husband and father but he is also a genuinely GOOD MAN!

Ellen, PLEASE help me make my husband’s life just a little bit easier.

Here we are at his sister’s wedding, which also happens to be our wedding anniversary. (I am the one with the pink hair 🙂 )

Me and my Superman!

EDITTED ON Jan 19th 2012 to add:

Hey Ellen,

Being that this IS your birthday-month; I wanted to share with you that May is my husband’s birthday month. In fact, this year he turns 40 on May 13, 2012.

You know incase the SWAGGIN WAGON is in NY around that time???

That’s a hint…. you know incase you didn’t catch it.

Love ya Ellen!!

And my Superman!!!

It’s my party and I can run myself into the ground if I want too!!!!

With this year being as difficult as it has been, doing something I truly enjoy hasn’t been much of an option.

One of the things I really enjoy doing is planning something special and hosting parties for special occasions and holidays. Traditionally, we host big Christmas and Easter celebrations for our family of 17 every year with special extras like traditional Weinachts Teller and Easter Egg Scavenger Hunts, birthdays of course are also real big here, and I plan big too complete with banners, balloons, and birthday fairies. Then there are the smaller  holidays and events that I try to make fun and memorable, like New Years Eve where Leon gets to stay up late and bang pots and pans at midnight; Valentine’s Day where we decorate the windows and make heart cakes; St. Patty’s Day where Leon leaves out a decorated treasure box at night for the Leprechauns to fill with gold and greenery; the last day of school where we have a big get-together in our yard complete with wet and wild summer activities to welcome summer vacation; 4th of July BBQ, which Ron has been hosting for 20 + years; Halloween… etc… etc… etc..  .

But due to all my health issues this year, I just haven’t had it in me to make these special events happen, I even had to cancel Easter at the last minute this year because I was too, too sick to make it happen, and that is saying a lot. I was so incredibly disappointed in myself. And for as much as everyone reassured me that it wasn’t a big deal. It WAS a big deal to ME! I loooove hosting the holidays, it was a big letdown for me and I lost out on doing something that makes me happy doing it. Even the Leprechauns made a poor appearance this year because I just could not do it.

Leon always looks forward to the backyard party we have on the last day of school and I was not about to disappoint him or myself. I knew full well that I would pay for it in the end, and that it probably would end up being a bit too much for me, but there was no way I was not going to have our year end “Welcome Summer Party” for Leon and his friends (and for me and my friends too).

The invites went out, and the responses came in. As the date came closer I started to have some doubts. Every day has been a painful one for me at some point during the course of it. There was no reason to believe that this day was going to be any different. I wondered if I would make it through my own party without excusing myself to take a nap. I started begging Ron to take the day off so he could help me get through it (that was unfair of me I know).While he could not take the day off, he did go above and beyond in helping me turn this hoarders paradise back into a home.

Leon’s last day of school was a half day on June 25th. I spent the morning rushing around and breaking a sweat as I was working hard to get the yard ready for 20 + kids and 10 + moms; that I had absolutely no time to wallow in the pain.

It was a really great day, despite the threat of rain. The kids arrived with their moms and headed straight for the water slide, while us mom’s headed straight for the Coconut Pineapple Mohitos.

I didn’t get to sit in a chair for any good length of time with all the running around I had to choose to do. I had a bunch of fun summer activities planned.

While we waited for the rest of the guests to arrive, the kids jumped from pool to pool and discovered the big box of prefilled water squirters.

Once all the guests arrived we picked teams for the water balloon fight. The kids had a BLAST!

There where plenty of other activities for the kids as well.

Like jumping on the trampoline;

playing with Lego;

drawing with chalk;

 building a castle;

 huddling together in pop up tents;

and just all around having fun with good friends.

It was tons of work to put it all together and keep things rolling! By the time I finally able to really take a seat and relax; I was exhausted and in pain. The pricklies on my arms were feeling hot and hurtin, and my legs were heavy and aching pretty bad. As the party was winding down I was dreading the worst part of the party, and that is the clean up. All the work to get it together and only a few hours later it needs to all be broken down again. I was NOT up for it any more.

As luck would have it I have some really amazingly terrific friends!! Everyone just chipped in and helped put everything away in no time, despite my arguments to “just leave it”.  In a blink of an eye the pools were drained, the castle was boxed up, as was the Lego, the chairs were stacked by the garage and the dishes were done. I don’t know what I would have done without my good friends to help me.

And now here I am just days later and I am still paying for it. I may have spent the the last 2 days in bed, but it was definitely worth it to see this smiling face;

And hear him say “mom, thanks for inviting all my friends over and having a party; I had so much fun!”

Yup, it’s my party and I can run myself into the ground if I want to!

… Cause it’s worth it!

Just another day in Boringville

What the voices in my head are screaming….

I think everyone has a little voice in their head, that whispers quiet thoughts that are just for them and dare not be spoken out loud.

At least I hope that’s true, otherwise it’s just me with a voice in my head.

…and in my case, I think there may be more than one voice.

I definitely think I have a voice that whispers quiet thoughts to me; telling me right from wrong, thinking one thing but advising me to say another to spare someones feelings or keep certain things protected and private.

But there is another voice in my head, a voice that has been sounding off since as far back as 12 or maybe even earlier.

When I was very young my lips would betray me and repeat out loud what that voice would say in my head. But in my defense, I didn’t know better, my selfcontrol of such things had not yet matured, and besides that voice was always the loudest. In fact it was a screamer.

I think I developed that voice from my mom. In more ways than just one.

My mom’s inner voice seemed to always be spoken outloud and unfiltered for everyone to hear. It became the example for me early on. So nI got that voice from my mom and because of my mom.

And to this day, that voice, “The Screamer”, the one that only responds to my mother still screams out in my head from time to time.

This morning was one of those times. This is what the voices in my head where SCREAMING, this morning during a conversation over the phone with my mom this morning about how forgetful I have been getting and therefore I must be addicted to pain medication:

“Ugh, I am NOT addicted to pain meds; I am too forgetful to be addicted to pain meds, I can’t even remember to take them”

“…I don’t care what Dr, Oz says… Dr. Oz does not even know me. And neither do Dr. Phil or Oprah for that matter!”

“…STOP SHOULDING ON ME!”

“…I’ve been like this my entire life!!”

“…Hellooooooo… I have Fibromyalgia  and ADHD”

“…There are TONS of things I should do”

“…would you look in the damn mirror, and stop projecting yourself on me”

“…one newspaper article and an episode of Dr. Phil, does NOT an expert make”

“…just because you gave birth to me does not mean you know me”

“…maybe I am just forgetful because I am too damn busy and stressed from helping everyone else that I don’t have time for my own life, let alone remember what is going on in it!”

“ARRRRRGGGGHHHHHH!

And then comes the quiet whisper;

Can you believe this woman is going to be 70!?!?

“…Aww,  just give her a break, this princess is going to be 70 in just a few months”

And more importantly;

“… I LOVE you, Mom!”

 

Edited to Add; My mom does not read my blog (hmm… she might know me better if she did) But, to those of you who do AND speak to my mom – Let’s just keep this between us more computer savvy people, okay?

LENNIE – this means you too 🙂

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