Monday, July 22, 2013

If everyone had a person with Down Syndrome in their life...

  • They would understand that we are all more alike than different - two eyes, two ears, a nose, a mouth, a heart, and a brain.
  • they would smile more
  • they would be forever blessed to know someone that is going against many odds throughout their life. However, the community of  people who Down Syndrome will keep working, preserving, and promoting acceptance of All those who carry an extra chromosome to those who don't.;
  • they would know everyone can be as caring, loving, humorous, and sometimes moody. People with Down Syndrome are people...they have feelings, they laugh, sure they cry sometimes BUT they are not happy all the time. When I talk about my beautiful boy, Anthony, with people I meet throughout the day, some will say, "oh, they are always so happy!" -- c'mon people- we all have our days, and Anthony had a huge meltdown when I took him out of a swimming pool yesterday, and has had many other days where he is mad or sad or just plain exhausted - every one and any one can have a bad day.
  • they would probably want to know more about what Down Syndrome is, therefore, more of us would be further educated and it is always good to learn more.

Friday, July 5, 2013

Karaoke singers - find the right song and it's all good...(well, sort of)

Now, when I do my karaoke gigs, (ha ha and I'm real professional karaoke singer, didn't you know?), I have a set list. There are no songs by sopranos on my list.

Why bother attempting to sing Whitney Houston's rendition of "I was always love you" when you know you can't hit the high notes? So, I stick to the more gravelly sounding female singers like Stevie Nicks, Blondie, Joan Jett, and Janis Joplin. Even my turn at Lita Ford's "Kiss me Deadly" was well received.

I don't want to rain on any one's karaoke umbrella(Ella, Ella), as I know singing is fun if you really like to do it. Plus it makes you feel like a rock star for a small amount of time.  Or maybe you are so drunk that you have decided to join the crowd.
I think if some people made a choice better suited for their voice,  it would all be good...

"Hmmm, is this thing on? I think some Monkees' songs are in order tonight!"

Rock on...

Friday, June 21, 2013

"Love, Marilyn"

Yes, I do love Marilyn Monroe, but the title to this post is the name of a documentary that recently was brought to HBO.

And my dear hubby, told me it was on(As an obsessed fan I did know the existence of this film, just hadn't figured out how to go about viewing it), so I stayed up until the wee hours of the middle of the night to see my favorite movie star honored and quoted by a variety of actors and actresses

Based on collections of letters and other random writings of Norma Jean Baker's days, it's not like any other documentaries I've seen about her. There was no speculation about her death. It was more of a tribute and spotlight on her life.

A few of the people that were on it actually had been close to her so you get to some truly candid words.

I highly recommend it for fans of MM, and for anyone who likes documentaries - it's filmed in an unique way.

A wistful yet playful Marilyn

Tuesday, June 11, 2013

I never thought I....

  • would have a child with Down Syndrome. It's a true blessing to have him in my life, and a lot of other people feel the same way. Every day has an uniqueness of it's own.
  • would find someone who loved me for who I am in every way.
  • have the courage to stand on my own to feet and tell someone exactly what I think of them without any holding back. Albeit, bluntness is generally not my thing. It's a very rare thing, but if something is bothering me that someone said or did, I want to tell them. A true friend and open minded person can handle it. - It's all part of what true friends should be. If you can't be honest with your friends who can you be honest with?
  • open my mind, expand the way I think and feel.
  • would be a mother  and have three sons.
  • could get up and sing in front of a crowd(the crowd is sometimes not that big) and get applauded.
  • have my own business. For a short time in my life, I sold kids' books, I did the best I could, and it lasted almost two years.
  • would be a published writer. My first 'published' work was in The Sun Chronicle, and it was a short essay on what the holidays meant to me. When I got the call that they'd be using my story, I was literally jumping up and down. My co-workers probably thought I looked pretty silly.
  • would meet a celebrity. Okay, so, he's a D list celebrity. but my new found confidence (and the free beers I'd had) had me sashaying over to Michael T. Weiss at the cast party for "Dangerous Laisions" at Huntington Theater in Boston. I can thank my brother for that golden opportunity. Dr. Mike was the first character I saw from Michael T. Weiss, and the best character on Days of our lives at the time I watched it in the late 80s'. So, I got up to him and said Hi, and introduced myself. He shook my hand, and didn't let go. I was in Heaven for about five minutes. Yes, I had an actual conversation with him about his Days' days. He seemed like a very nice man who just happens to be very cute too.
  • would be an aunt - Both my sisters have sons as well, and we are all lucky to have such healthy and handsome boys.
  • would have a natural child birth  - My first childbirth experience resulted in a cesarean section. I didn't think I'd be able to have a natural childbirth - yes totally natural as there was no time for the drugs so I  thank T.J. and Anthony!  (I don't mean that in a sarcastic way either, I am very proud that I did it!

Friday, May 24, 2013

You are trapped in an elevator....

I am sure most people don't want to be trapped in an elevator, but if you were, and you could chose who'd be trapped with you, who would it be?

You can pick three people. One must be a friend, and someone from your past that you haven't seen in years, and someone famous.

My choices -
I am going to go out on a limb here and chose a 'friend' that is in my online list of friends. His name is Justin and just talking to him I can tell we'd somehow get along in a trapped elevator. Plus, we have never met in person. We've been chatting for numerous years through the magic of Internet, and it would be cool just to hang out and to actually see who I've been talking to.

Let's see there are a lot of people from my past, but who would be the one to be lucky enough to be stuck in the lift with me? I have one friend that I lost touch with from junior high/high school that I'd like to catch up with. Her name was Jen, and sitting on the floor of an elevator bringing each other up to date on our lives.

For a famous person, I'm going to have to pick Johnny Depp. While his characters can seem so odd and out there, and sometimes a bit goofy, I highly doubt he is. I'd like to see how he'd react to the scenario of being stuck in an elevator with three people.

Thursday, May 23, 2013

Anthony's Smile

Sometimes I wake up with a bit on the grumpy side. Then upon seeing Anthony's smiling face makes me smile and instantly I am transformed.

I'm not saying my other children don't provide the same response when they smile, but they don't have those cute chubby cheeks and an instantaneous laugh to go along with it.
I've seen my lil' Ant make the most unlikely people smile. How can you not when you see this face?
There is something so amazing about seeing an Oscar the Grouch change into an Elmo.

That upside down frown of my baby is a dose of medicine we can all use no matter what the day brings us.  Anthony's smile is infectious, beautiful, contagious... Now there's something that is good to catch...

Anthony's Smile...  : )

Friday, May 10, 2013

Running(a writing prompt) vs. a slight jog

I come from a family of walkers. Running only happens when trying to get out of the rain, or a giant wind or sand storm is heading our way.
Running is something my son, Anthony, with Down Syndrome doesn't do. He will someday, but for now a slight job will suffice. I m not even sure how to get him to move from slight jog to run. That may require some help from  a physical therapist. Or maybe if I put a giant vat of ice cream about ten feet away from him he may run to it?

He Will run. I will slightly jog....

Friday, May 3, 2013

An amateur artist, some tasty snacks, and a lil' sangria...

Once you are married and have a few sons, daughters, hellions, whatever you chose to call them, the idea of a night out seems pretty awesome. Sometimes an hour off from life is a great escape. So, when I got to spend an entire evening (last night) , with my mom friends, it was like I'd been deserted on an island with Buffalo chicken dip and sangria.

My friend also the hostess for the evening is an artist. She brought out her latest yard sale find, a exorbinent about of wine glasses, and a variety of paints and brushes.
So we all had one glass with sangria and the other glass was our soon to be a piece of art. Suffice to say that a few of my friends are very good artists, then there's me. However, it was more about having fun and catching up on what was going on in our worlds. I actually did have a lot of fun with the paint brush in hand.
To think I did three glasses(shh...the second one is a mother's day gift for the wine connissour of my family whose also my mom), is a feat itself. As the night wore on, with only minimal alcohol consumption, I decided just to have fun and that it wasn't my 7th grade art class.

Sometimes it's the most simple nights that make the best ones! Especially when you are with your friends. :)

This is me with my 'Monet' inspired work. It's supposed to be a tree, but I made the branches way too thick.

This is the first -- Originally I was trying to get it to match my kitchen(yellow, green, and a lil' read) but somehow ended up doing this swirly Charlie Brownish sort of line thing. - I am sure there is some sort of art term, but I'm just making this all up as I go along.
One of my friends thought it seemed sort of Mexican themed...It will be on display on Cinco De Mayo!
Cheers everyone!!!

Thursday, May 2, 2013

Part 2 - Anthony's homecoming... My Awesome Anthony!!

Needless to say, I could write about Anthony all day. From those chubby cheeks to the way he climbs my bed as if it's a tower of comfort to which he wants to park himself with a book or two. Hey, that isn't such a bad idea!
Like my other children, bringing him home, brought a certain craziness back to our world as lovely as it had gotten. My husband and myself  both started doing a lot of research and educating ourselves about what Down Syndrome is. It's different. It's a slower life.

Between the internet, books, and meeting other families who had a child with DS, we started learning a lot about it. Also, we were meeting new people who were in that same slower boat as we were.
I have learned so much about what DS since Anthony was born. I'm actually grateful for this amazing life -- the little life, Anthony.
He can make anyone smile, and hams it up a lot.
He's a Rock Star!

He's a budding artist!

He's awesome!! I love you Anthony!! Thank you for being YOU and what you bring into the world.

Coming home - A better Place

After almost two weeks in two different hospitals, Anthony was finally able to join his family at their modest yet humble abode.
Born with a low body temperature and slow heart rate, there was some concern and he was kept in his incubator more than he hung out with his mama. My heart sunk, things were not like this with my other “male” deliveries. The staff at the hospital did everything they could do to help him thrive.
I was discharged without him thinking what else could possibly happen? Seeing my other two little dudes with their signs and excited faces just about broke my heart.  After not being able to stabilize his temperature and heart rate, Anthony was being transferred to a pediatric hospital.

All I wanted was for my baby boy to be home and it was so hard to have to go to the NICU and see him hooked up to all these machines. Every day there were updates of his good health and great progress.
The day he was discharged, my husband and I met with Dr. Sig Pueschel, who was the doctor in charge of the Down Syndrome Program at Rhode Island Hospital. He gave the official diagnosis of Anthony having Down Syndrome and did it in such a quiet, upbeat way that I felt immediately relieved and happily relaxed about what the future would bring.

After three days at Sturdy Hospital and 5 at Women & Infants' Hospital,  he was finally able to come home. I was so happy to have him be with us and begin his life outside the walls of the hospital. His coming home brought us into a new world. It’s a beautiful, amazing, colorful, place where we have grown as a family and our world became a better place.


Monday, April 15, 2013

I gotta a fever ..I need a prescription...

and unlike Will Ferrell, it's not for more cowbell.

It's writing... The past few weeks I've been in this funk, feeling much like a dark cloud as followed me around relentlessly. It didn't do me any good, writing does me good - It's my prozac, my ying to the yang, my life's passion outside of my family, movies and music. So how did I get away from it? Well, I'm back...

So, I finally decided I had to sit down with my iced coffee, while the first day of April school vacation is underway, and get back on track. Plus, I felt something about to brim over, much like the boiling water in the pot, and so far this seems to be simmering things down.
It's not like I want to use this blog to vent about the things bothering me or write about my problems that I keep inside my cobwebbed filled head. Slowly the spiders will find another place to house themselves as everything evens out. It's amazing that with just letting the words spill out of my fingertips onto the keyboard and onto the world wide web, I feel a weight lift from me.
The sun is just starting to peek out behind the cloud and things are looking up.

Now I just need to remember to take to the writing daily (maybe even more than once a day if time allows) much like I take my one a day vitamin and allergy medication.

What is your prescription?

Friday, March 15, 2013

I don't miss...

taking the train into Boston every single day to go to work. I prefer to see Boston in the light I see it in now - as a day of fun, exploring, or a night time frolick through back bay after going to see the Boston Pops.

I don't miss being lonely, but sometimes I miss the alone time - It's ironic but back before I met my husband, I was alone almost all the time and I hated it. Yet, now, that type of time is a far and few between. When I go get it now, I love it! You can't get much more ironic than that, Alanis! (Don't you think?)

Getting married and having a family has completely changed my perception and my attitude grows in a positive way as i get older. So, I don't miss some of the time I wasted wishing things were different. Instead, I relish in the present and look forward to more good days!

Thursday, March 7, 2013

Where I Belong

Sometimes I wonder between my past and present lives, where exactly do I fall in the whole scheme of life.
Where am I supposed to be? The crossroad I stand in is made up of the smooth versus the gravelly. The smooth is where I was 20 some odd years ago, I just didn't see it. I tended to feel that I was on a dark road. Yes, it was straight, maybe a little too straight, and I wanted to really live alongside the members of the band, The Eagles.
The gravelly road full of tiny little pebbles and big boulders was (or should I say is) the more unknowing way. Life tends to be a lot of stubbing my toes on those big rocks. It smarts, sometimes really hurts when this happens, but later on I realize that things occur to show me how strong I am.

I truly believe that I belong on the harder road as it has helped shape who I am today. Challenges have visited me in many forms, and for many of those challenges I see something sweeter at the end once I've dived in head first and dug my way through to find the sweetness.

Sometimes this conversation goes on in my head, where am I going? where have I been? and am I where I should be?
This very tough yet tender gal is going towards that giant formation of strength. Moving forward, loving all those in my life - who also cheer me on, I realize I am where I belong - on a moving treadmill and taking in all that surrounds me - family, friends and my passions.

Friday, March 1, 2013

Online friends - are they the real deal?

So, in the past 12 years or so, a few branches on my friend tree are ones that are 1,000's of miles away. Thanks to the internet, and being in the right place at the right time, I've met three people online, between myspace, my writing life, and my online 'journal'. Now we are all on FB, or have exchanged addresses and become pen pals in one way or another.
It's ironic that even though we've never met in person and sealed the friendship deal(at least in some opinions), that I consider these people to be good friends.
They all live in the same area of the country, so someday I'd like to make it to the vicinity of New Orleans, the Mississippi, and the corner of Missouri.
The first I met was D(not using real names - to protect the innocent(or maybe not so innocent), who is a writer/editor and she helped me with my writing. She saw potential in me and I want to thank her in person for all she's done for me as an editor and friend. Then I want her to make me one of her home cooked meals that I read about on Facebook now.
Secondly was Nikki, who was also a writer - hmm, i since a trend here. The big reason I fell into like with this person(whether he was or male or female) was that we liked a lot of the same music and he had the job I've always wanted - writing for a paper, and writing more entertainment type stuff versus the boring ol' news.  I should retort with , he was a writer... we've had a long strange trip as friends and he's not writing anymore despite the urging nods I give him to do so. He's been a good friend and knows how to make me laugh -
And then thanks to my D list celebrity crush on Rex Smith, I met Jessie on myspace, and we've gotten to know each other well through phone calls, texting, messaging, letters,... She's funny, interesting, and understanding.
It's like meeting new people at a meeting or a concert or a writers group, and I've known them all long enough to KNOW that they are okay, I've known them a long time. And with the MTV show Catfish I feel like baiting my own hook to finally get into the big pond and forage my way to meet them all. They've been good friends to me(and I hope vice versa) over the years of going through so much. They know more about me than people that I actually get to hang out with, How Ironic! Don't you think?
Online friends can be whatever you want them to be - for me they are my real friends. :)

Knowing Anthony

To know Anthony is to know love.

Ant & I at his Christening if Fall 2009

Before I knew him, I didn't know a thing about Down Syndrome. I didn't know he was carrying an extra chromosome. I didn't know just how much I could love, grow, and learn about pretty much everything.
I didn't know that that 21st chromosome didn't mean the end of the world, if anything it is a whole new realm.

Also, this whole new group of people that have all been so wonderful. This includes their families as well. It's a true blessing to be in this community. 
It's ironic that I didn't know a thing about Anthony John's special gene, and now I feel so full of knowledge and power.
I didn't know how strong I could be until Anthony...

Thursday, February 21, 2013

Before I became a mom(writing prompt)

I could set this up with a bulleted list of what I knew then versus what I know now. However, I chose to use this writing prompt to get up on a soapbox (I promise not to be too preachy), and reminisce about my life before having my sons. So here it goes...

This picture was taken New Year's Eve, 1991 (I met my husband in May of 92)

Before I became a mom my days started later, (yes, even though my kids do sleep in,they don't sleep until noon time), my nights were longer(thanks to the those lazy days haha.) My life was lonely, though. I can remember waiting for my life to start. I'd spend a lot of time alone, working, reading, watching movies that weren't cartoons - basically a lot of ME time. So, before kids, it was all about me.

My me soiree went on for a long time, however, I don't think I appreciated it then as much as I appreciate my little snippets of time from the mom party. It's ironic - when I had all that time, I wasted much of it, and now, I long for that time - it makes me better as a mom. So, those karaoke nights are crucial to my well being!

Honestly, before I came a mom and wife, I didn't know where my future was going. I don't want to make this a depressing blog. I just didn't see myself going anywhere. Meeting my husband started the ball of life rolling, and rolling, and getting closer to me, much like that giant boulder that chased after Indiana Jones. Once you find happiness of any kind, you just want to keep it up and keep it fresh.

The world before kids was scary, but now I have these little extensions of myself and my hubby, and only clowns and spiders scare me. I worry about my boys instead of worrying what I am doing this weekend or if I'll ever find that perfect job. 
Now I have the perfect job, and I'm the happiest I've been in my life. I have time to fry other fish aside from my family and my home. Everything in the pan is everything I've loved since I was a kid. Before I had kids, everything I wrote was fictional therapy. Now I just relish in the time i have and write whatever is on my mind. Blogging certainly helps.
Before I became the mom I am now, I never knew what great friends I'd have. I was typically a lone or had one really good friend. Now, I have the most wonderful supportive friends who are also moms.

It's all good... Everyday is different but the same in a good way, and before I became a mom, I couldn't say that.

Me with my husband, pre marriage, pre kids, in a Boston nightclub's photo booth.

Tuesday, February 12, 2013

If Time Stopped(writing prompt)

*Either my writing skill is slipping or my weekly writing prompts are becoming more of a challenge,but I'm up for it. So here it goes...*

When I ponder over the idea of if time stopped and automatically think of Jim Croce's "Time in a Bottle". What is the numero uno thing i would do?
Well, if it time stopped, right now, at this moment, I'd be happy. Today started off a little later than most as my three sons all had a delay. My oldest, FT, was promised a ride to the bus stop, and he got it. Just in time for the bus, he safely made it to the end of our street and told me "It's been real, mom." That was a moment were if time had stopped I could just hang in the air with a big smile knowing that I had made my son's day by just giving him a 30 second ride.

If Time had stopped when I woke up, that would not have been so bad as I was the first to wake up at 8:30, yes, 8:30. My children have inherited the "i like to sleep in" gene from me :). From a complete different perspective, the quiet was a beautiful thing. It's almost as if I was a rechargeable battery that was being juiced up.

If time had stopped when my Middle son, TJ, woke up, and had his blanket pulled atop his head so he looked like a Shepard, I'd definitely had scooped it up and placed it my Captain America coffee cup. He was smiley and calm. And what a beautiful although toothless (he lost another tooth last night) smile it was!

If time had stopped when I scooped up my baby, my final child, AJ, that hug would've stuck to me all day like sweet sticky glue. To be stuck together like said glue, would have me wish for time never to start. I could just hold him, feeling those chubby cheeks against my own roundish face, and watch the world, or at least my world, around me.

If time had stopped - with my husband, that might quite possibly be that opportune moment to just be with him ....We tend to take each other for granted, everything but us seems to be on our minds. Embracing, and loving and watching what we've made, My husband and I would just sit back and relish in the the moment.

Friday, February 8, 2013

Being Real (latest writing prompt)

I'm cutting it down to the wire here getting my writing prompt blog in, but the reality is that all my balls are up in the juggling air and I can't be everywhere those darn balls are going to land.

Just sitting here, I sip my English breakfast tea and look out at the light snow falling that will eventually snowball(pun intended) into the Blizzard of 2013. In reality, we are supposed to get over two feet of snow.
Somewhere between the snow, my kids being home all day, and the baking I'll be doing this domestic goddess is keeping it all in perspective and in the moment.

The reality is while I go along with the present moment, my kids are thinking about lunch at breakfast time.
Honestly, I am not sure what to write,  i know my life is a bouquet of wonderful smelling flowers that wilt, and lose petals after awhile. I'm gonna enjoy the beauty of those buds while they are around, but their scent will forever remain with me.

To be real is is truthful, and I'm as real as I'm going to get. I don't always tell the truth, I don't always do the right thing, but part of being human is making mistakes in which I've learned a lot from over the years.

This is as real as it's going to get. Be you, and strive for your best.

Friday, January 25, 2013

Speaking up for Anthony

He's a rock star!
On My little guys' behalf, My Ant, who is a hard working little bug, I Speak Up.

Anthony may not be talking like other kids his age or running around in circles(he tends to walk in circles instead), but he is a person, just like the rest of us. We all run on different circuits, choosing when we want to eat, talk, and laugh. So, in his honor, I say, Anthony, like many other children with the extra chromosome, will be chattering away and dashing around like a Pixar character in his own time. So, please don't ask me when he will talk. Maybe if some people would be quiet for awhile they might hear him say, hi or baba. I understand it's just how many start a conversation, and I'm okay with that.

Having Anthony has opened me up a lot - I do speak up more - and I realize that like us people with any form of special needs/disabilities are people. People are people (and Depeche Mode, I need not quote), and we all want the same thing - to be accepted and to not be judged based on our looks, our lifestyle, and in my Ant's case(and many others), an extra chromosome. They didn't ask for that, yet they do the best with it and are amazing people!

I know this is just how the world is, there are lots of ignorant, mean, and downright nasty people.
So I speak up - to everyone -
Insensitivity and cruelty are more horrible than having an extra chromosome could ever be.
To those who abuse the word "retarded" I speak up - well, mostly those who use the word in a derogatory way, especially those that see nothing wrong with saying it when there is a whole community that is trying to help those with special needs be treated more like the rest of us.

I've spoken my piece and Peace out...

Friday, January 18, 2013

At the end of the day....

I rest, I let my mind and body go limp and hopefully if all went as planned, I have a bit of quiet time to relish in.
Don't get me wrong, I love my time with my children and family, but for me, to be better as a person, but mostly a mom, that last hour of my day is my time to decompress. My boys all understand that about me. Mommy needs a time out but it is a different kind of time out.

Although something else I like to end my day with is to do a scan of my day and wonder what I could have differently to help my children be better people.  The same goes for myself, I think back of the day and wonder why I said or did certain things.

At the end of the day, hockey has wrapped up, or we've just watched a movie, and it's time to rest our heads. We all go to sleep wishing for a better day ahead.

Thursday, January 10, 2013

Helping others, jello shots & Walmart

At the moment, I am volunteering at the library. For the most part, I just sit here and babysit used (and many look pretty darn good) books that the Seekonk Public Library sells. There are also movies, games, children's books, puzzles, and magazines up for grabs.
I could spend hours just sitting here and reading. Today, I brought my laptop and am doing some writing.  It's probably not the best thing to be doing, but I am usually texting a friend.

However, when there is someone perusing and asking me questions, I am there for them. For me volunteering/helping others is the equivalent of having a few shots of jello injected with vodka or even a good long walk on a beautiful sunny day. Basically, I feel more alive and good about life when I've made some one else's day. The best part about it is I've not just helped someone but I've given them something you can't put a price on - a smile. : )

Monday, January 7, 2013

Why I write

Why do I write? Over the years, the reasons I write have been different, but now, I feel like the true reason is more about how it makes me feel. While it would be nice to get paid for my writing, I am just loving what I do.

It makes me feel happy, busy, less stressed, and lately more writer like. Between The Institute of Writing for Children, Diana Ross(not the singer, but my first editor), Abigail Crocker, 9my second editor, for a short time, but the Patch article was a great experience) and Sarah Erlandson (not an editor but one of my school friends), I have discovered, learned, created, and been compensated for my writing. Diana, if you read this (and I hope you do), you have been a true friend as well as a huge help in my writing. Thank you!

I write because it balances me. So, if I am having an off day, tell me to go do some writing.