“The more corrupt the state, the more numerous the laws.” ~Publius Cornelius Tacitus

Video By Roseanna Borelli

Our government shutdown last week.  And while Barack would like for us to think this is an epic event that can be compared only to an apocalypse, the truth is, only 17% of the government has shutdown.  Barack has deemed many services still essential.  More than half of his wife’s staff (makeup, hair, etc.) are still employed,  Michelle’s website,  http://www.letsmove.gov/ is up and running and the White House chefs all still have jobs.  As of today, Medicare, the United States Postal Service, tax collection and our military all continue to operate – but Barack did have to cut all sports and entertainment TV to our troops overseas.  God forbid they enjoy themselves if and when they have even a minute of free time from risking their lives for us.   Good luck trying to visit the National Zoo or any National Park – and don’t even think about trying to view Mount Rushmore, Barack made sure we can’t even slow down on the roads that our tax money pays for to stop and look at that national monument.  

“We just can’t trust the American people to make those types of choices…. Government has to make those choices for people.” ~ Hilary Rodham Clinton

I remember enough from my high school government class that each year Congress has to agree on a budget to fund the government.   This year we seem to be at a standstill, with Congress unable and unwilling to agree on how best to use federal funds.  It is my understanding that they couldn’t even agree to a stopgap measure to temporarily provide funds for our government. 

The point of contention in all of this is funding the Affordable Care Act (Obamacare).  In case you’ve been living in a cave for the past few years, Obamacare is the president’s pride and joy that will increase the number of Americans who receive health insurance by forcing them to buy it or face severe fines.  At first, I thought this was a ridiculous tactic by the republicans, a type of temper tantrum, if you will.  But in the past few days I have read and heard countless stories from personal friends of the nightmare they are now faced with regarding their health insurance.  Sure, they can keep their current health insurance, but the rates have more than tripled and their deductibles are five times higher now.  How in the hell is this affordable to average, hard-working American citizens?  Barack is a wolf in sheep’s clothing, promising us one thing and delivering something that can only be described as its polar opposite – and the begin of our demise.

I hope like hell all or part of this tyranny of a healthcare plan is either doneRoseanna Borelli away with or forced to undergo a major overhaul – actually, I wish that for our current government.  Our rights are slowing being stripped from us – this is not the America I knew even fifteen years ago.  For those of you that have been drinking the Kool-Aid, you are about to have a very bitter taste in your mouth as the rest of Obamacare and his presidency unfolds.  

When I taste something bitter, I spit it right back out.  And then I make a little video…

“When enough people realize that they are slaves but don’t have to be, revolutions happen.”  ~ J.S.B. Morse

“I am for doing good to the poor, but…I think the best way of doing good to the poor, is not making them easy in poverty, but leading or driving them out of it. I observed…that the more public provisions were made for the poor, the less they provided for themselves, and of course became poorer. And, on the contrary, the less was done for them, the more they did for themselves, and became richer.”  ~ Benjamin Franklin

“You know something is wrong when the government declares opening someone else’s mail is a felony but your internet activity is fair game for data collecting.”  ~ E.A. Bucchianeri

“The only way to make a difference is to acquire power.”  ~ Hilary Rodham Clinton

“Politically, Republicans and Democrats are at opposite ends. One’s a burp and the other’s a fart.
”  ~ Jarod Kintz

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October 9, 2013 · 5:18 am

Laughter is the sound of the soul dancing. ~J. Kintz

When was the last time you had a begin at your toes, belly shaking, tears streaming down your cheeks, nose-sorting kind of laugh?  Yesterday?  Last month?  Last year?  I hope it was recently.  I hope it happens more often than not and I even hope that it’s sometimes at yourself.  Yes, yourself.  I’m not sure I would have written that last statement fifteen or even ten years ago. But as I’ve gotten, older, um- wiser, I’ve learned that not only is it ok to laugh at yourself, but it feels good.  It’s a sort of inner acceptance that occasionally you do embarrass yourself and sometimes it’s damn funny – and there is nothing wrong with that.  In fact, there was a study done in 2011Roseanna Borelli regarding this very topic (look, it’s not as ridiculous as the The Elephant Self-Recognition Study to see if elephants recognize themselves in a mirror).  The University of California, Berkeley, and the University of Zürich studied 70 psychology students to measure their ability to laugh at themselves.  When the study ended, it was discovered that being able to laugh at yourself is a distinct trait.  It also revealed that it coincides with having an upbeat personality, pleasant mood and a good sense of humor.  I think if you asked those that know me best, they would agree that I have those traits.  And I can tell you from personal experience, as recently as yesterday, that I can most definitely laugh at myself.  I often share my embarrassing moments on my Facebook page.  I do this for two reasons.  First, most of the predicaments I get myself into are rather comical and I like to think that by sharing them, I’m showing others that we need to stop taking life so seriously and lighten up some.  Second, it makes me happy to know that sharing my latest blunder made my friends laugh, yes, even if it’s at my expense.  When I write something and someone replies with, “that made my day”, or “I haven’t laughed that hard all week”, well, that makes my day.  Like “paying it forward”, but with humor.

My most recent embarrassing moment occurred this past weekend at the park. Autumn was in the air, so instead of going to the gym, I decided to power walk outside.    I have a rather diverse taste in music but when it comes to working out, it’s all about Motown and old-school R&B…with a little latin tossed in. With my iPod in hand and a fabulous playlist created by yours truly, I hit the pavement. Something about this time of year invigorates me and I had completed a mile in record time.  Ok, I wasn’t exactly training for a marathon, but it was impressive none the less.  With the endorphins now kicking in, I began my second mile almost jogging – emphasis on ‘almost’.  And then, it happened.  I heard those first few notes of the song that makes it impossible for me not to want to dance.  I’m talking get my stilettos, a red dress and find a dance floor kind of dancing.  My pace quickened as the song played, I had a rhythm now and I dance-1050x600was singing along to the song.  Half way through the song it happened, I’m not sure it was even a conscious decision, but all of a sudden I was doing a cha-cha/mambo step with a few salsa moves.  It was during this impromptu dance session that my ear phones fell out – and that’s when I realized I had a small, but quite attentive, audience. Two elderly couples were watching me and when our eyes met, they applauded.  I smiled, took a bow and started laughing. One lady said to me, “dear, I want to know what you’re listening to so I can move like that”.  I was still catching my breath (and laughing) when her husband asked me if I came to the park often.  I told him that I do three to four shows a week.  The five of us talked for a few moments and then I continued on my walk.   I’ll admit, I felt a bit foolish as I walked away but then I thought to myself, why?  I was having fun and in doing so,  I brought a smile to four other people.  Life is too short to be taken so seriously, that’s what I’m learning.   And I think I get it now…that famous quote by William Purkey,

“You’ve gotta dance like there’s nobody watching,
Love like you’ll never be hurt,
Sing like there’s nobody listening,
And live like it’s heaven on earth.”

I think this will be one of those stories that has a “Part 2”.  So I’m going to close for now, I really need to get ready – I have a show in 30 minutes. 

♫~~~♪~~~♫~~~♪~~~♫~~~♫~~~♪~~~♫~~~♪~~~♫~~~♫~~~♪~~~♫~~~♪

Wondering what song inspired my mid-morning mambo – well here it is:

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September 30, 2013 · 9:38 am

Parenting means giving them your presence, not presents.

I just heard on the news that yet another teenage act of violence is being blamed on Grand Theft Auto.   Really?  I did a little research today and it is mind-boggling how many teenagers are succumbing to criminal mischief only to have their parents shout, ‘it’s the video games that made him do it‘ and Roseanna Borellithen turn around and sue.  Because that’s what we do now, something goes wrong, it must be someone else’s fault.  Are you overweight – sue McDonald’s because they must have forced you to drive to their restaurant (and I use that term loosely), purchase an artery clogging meal and then super-size it while the manager force-fed you against your every wish.   Accountability certainly seems to be a thing of the past.  At what point are parents going to take responsibility for, oh I don’t know, RAISING THEIR KIDS AND MONITORING WHAT THEY DO!  I love Forza Motorsport but you don’t see me racing down I-65 trying to crash into rival cars.  I’m giving Forza a shout out because they encourage online reviews from kids and unlike Grand Theft Auto, the violence, sans car crashes, in the Forza series is non-existent.  http://www.commonsensemedia.org/game-reviews/forza-horizon/user-reviews/kids

My daughter is in college now but during her formative years, the only video game console that was in our home was Nintendo’s Wii Fit.  I know, hardly ‘cool’.   Somehow she survived her childhood and teenage years without an Xbox or Playstation and I’m fairly confident that the lack of those things will not land her in therapy.  Now, I’m not saying she won’t end up there one day due to her crazy Italian family, but you will never hear her say, “it all started one afternoon after school when I met Mario & Luigi…”

I have friends in their thirties and forties with children ranging in ages from 5 to 15.  All of them have some sort of gaming console in their home – some strictly monitor the hours their children can play on it, some do not, at all.   I have seen first hand these responsible, educated,  all around nice people buy video games for their pre-teen kids, even when the game rating is “17 and Roseanna Borelliover”.    Hmmm, let’s think about the ramifications of that decision sans any common sense for a moment.  You allow your child, who has barely entered the coveted double-digit age, to play games with excessive use of heavy artillery, while often promoting sex & drugs, massive killings and violence that would impress Tony Montana from Scarface.  Then, at age 16, they begin getting into trouble – drugs, gangs, maybe even shooting up a mall full of people on a Saturday afternoon.  And when the police question you, you really have no idea why he would do such a horrible thing because he was a very quiet boy, always kept to himself and spent a lot of time in his room.  Guess what, he wasn’t writing poetry.  Let me be clear, I am not blaming video games for trigger happy teenagers. I’m putting this back on the parents. Because I would imagine that a young, impressionable ten-year old that was allowed to spend entirely too much time playing violent games for seven years might not grow up to be the next Ambassador for Peace.

I think video games played in moderation are probably pretty harmless.  If they weren’t, millions of adults that play Farmville would have all turned into farmers with anxiety issues wondering if they had watered their crops and another million or so adults would be making those same farmers offers they couldn’t refuse to grow  crops of weed for them to sell on Mafia Wars.

All joking aside, being a responsible parent is damn hard work.  But guess what, they are our responsibility.  Not teachers, not coaches and certainly not the TV or video games.  It’s on us first and foremost.  It’s a thankless job, the pay sucks and that terrible two stage has been known to stick around for

Roseanna Borelli

Proof my daughter was told “no” and didn’t like it!

years.  Why some parents try to be their kids ‘friend’ I will never understand.  My daughter is nineteen, and I’ve told her over and over, somewhere in your thirties we might be friends – now, I’m still Mama. While she was growing up, if she misbehaved, she was spanked; when she talked back, she got a teaspoon of vinegar in her mouth.  When “time-outs” became the new parenting tool I couldn’t help but laugh – yes, put your child in the corner or better yet, in their room, where the video games are.  That’ll show them!   Bette Davis said it best, “If you have never been hated by your child, you have never been a parent.” 

I fear this upcoming generation will be filled with people who have a grandiose sense of entitlement and zero knowledge of personal responsibility – I’m already seeing it.    They learn from example people, so if you’re a parent, that example had damn well better be you – and you need to make it a consistently good one.  But let me tell you something, when your daughter is in college and you get a text one day that says,

“Mom, I’ve been meaning to tell you this, thank you for raising me the way you did.  Literally every person I met this weekend told me they’ve never met a girl who could stand up for herself like I do”.  

…makes every damn second of the past nineteen years worth it.

Every. Damn. One.

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Mitochondria, Miracles & Mindless Morons

Roseanna Borelli

Joey, December 2005

Some of you already know that my son, Joey, was born in April 2004 with Mitochondrial Encephalomyopathy. September 15-21, 2013, is Global Mitochondrial Disease Awareness Week. Across the globe, this week will be marked with various efforts all designed to raise awareness about mitochondrial diseases.  http://www.umdf.org/  In honor of Global Mitochondrial Awareness Week, I’m sharing a few videos of my little boy, Joey, and his battle with Mitochondrial Encephalomyopathy.  What you are about to see took place from October 2009 to February 2010.

Lack of understanding about this disease is one of my biggest frustrations. I made the videos below after Joey slipped into a coma in 2009 after his O2

Roseanna Borelli

Leaving Children’s Hospital, December 2012

levels dipped into the 50’s at school. A rude and ignorant mom at Joey’s school called DHR and told them I was neglecting Joey and knowingly brought him to school sick that morning. We had never spoke before, she never asked me any questions, she just assumed. So, instead of being with my son while he lay comatose in the ICU, my entire family was interrogated by DHR employees for hours. Of course, the case was closed as quickly as it was opened, but it prompted me to make the videos below to show how quickly things can change for children like my Joey.  The video is in three parts and it chronicles Joey’s coma and recovery from October 2009 to February 2010.

There is absolutely nothing more frightful than ignorance in action – nothing.

This next video was made during weeks 2, 3 & 4 into Joey’s coma.  This is where I learned how powerful touch, sound and familiarity can be to a child’s recovery.  While the doctors hadn’t given up on Joey, their outlook was dim.  Joey wasn’t waking up and machines were breathing for him.  I made the decision to have him moved to a room out of the ICU where friends and family could come and visit for a short time and possibly say their last good-bye to Joey.  Just like his mama, Joey is a very social little spirit.  He thrives when those he loves are near him.  So if this was going be the end of his life on Earth, he was going to be surrounded by loved ones, not machines that beep and doctors that only saw him as a patient with a terminal illness.  The doctors approved my decision (like they had a choice) and Joey was moved to a very large room.  I made it very clear that during this time there was not going to be a limit on the number of visitors he had or the length of their visit.  There is a time and place for rules and regulations, this was not it.

Just watch what happens when people start coming to see my little guy – it’s like witnessing a miracle.  The look on his face when he sees his sister for the first time in two weeks still gives me chill bumps.  Those two have always had a very special bond and it was never more evident than on this night.

Below is the third and final video highlighting his coma in 2009.

After 49 days in the hospital, and just one week before Christmas, Joey was finally able to return home. Sadly, Joey was rushed by ambulance early Christmas morning when he began having difficulty breathing. (pay close attention to the photo in this video that was taken on Christmas Eve, then look at the one taken just 18 hours later – that is Mitochondrial Disease at its worst – in just hours my Joey can go from healthy to fighting for his life). In the ER, his O2 was in the 60s and one lung had collapsed – Joey had pneumonia. After one week in the ICU, Joey was able to return home, although he was very weak and lethargic. Joey slept for almost a month, recovering at home. Then, one day, Joey just opened those beautiful brown eyes, smiled and was back to his mischievous little self. Like so many times before, Joey fought hard and the power of prayer prevailed. In February 2010, Joey returned to school after being away for four months. The welcome back celebration was one of the happiest and most emotional moments of my life. I’m so fortunate that my little guy is able to attend such an amazing school that is tailored for children like him.  Oh, and the Auburn shirt you see him wearing, that was for his teacher at the time who happens to be a huge Auburn fan.  Yes, it was painful to put the orange and blue on Joey – but every now and again you have to bite the bullet and step out of your comfort zone.  That was three years ago…so I think that’s enough discomfort for this decade.

Joey celebrated his 9th birthday this past April and continues to be the happiest kid I know – smiling each and every day, regardless of how he feels. We could all learn a thing or two from my little boy. I know I have.  Joey continues to attend school two to three days a week for a few hours each day. His loves continue to be sharks, Alabama Football, the 49ers and anything at all to do with the movie “Finding Nemo”.  He has his mama’s Sicilian stubborn streak, and that Italian temper when things don’t go the way he wants.  He is strong-willed, loves to giggle and has a thing for blondes.  Despite the many limitations life has dealt him, Joey just seems happy to be here and maybe that’s an outlook on life we should all have.  

Hopefully this small peek into our world will silence those who continue to judge me regarding Joey’s care, while at the same time raise awareness about this horrible disease that will one day take my little boy from me.  But there are always going to be haters and there are always going to be those who think they could do it better or different.  If you are completely honest with yourself,  do you really know what you would do in a particular circumstance until  you have experienced it yourself?  And not just experienced it, lived it each and everyday, year after year?  No, you don’t.  I certainly wouldn’t have known what to do in this situation ten years ago, but now it has become my life – and I’m doing a damn good job of giving my little boy the best life possible while he’s here.  How easy it is for us to judge someone else on how they do something, assuming we know better when in fact, we haven’t a clue as to what they are going through.  Be careful my friends, because if and when you do this,  you are judging a person’s actions on what you think you might do in that situation – you are assuming.  When you actually have no idea what you would do because unlike them,  you are not living their life, you are not

Roseanna Borelli, August 2013

That’s me – very proud mama of two amazing kids, Gionna & Joey.

having to make decisions based on their available choices.  And while some parts of my life resemble that of an open book and people like to assume they know everything about me, I can promise their sweet asses they don’t know my entire story.    

Ah, but one day they will and the bookstores won’t know whether to place my book in the section marked suspense, comedy, horror or ‘OH MY GOD, NO SHE DIDN’T!

“Sometimes your light shines so bright that it blinds people from seeing who you really are.”  ~S. Alder

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Maybe Christmas, he thought, doesn’t come from a store. Maybe Christmas, perhaps, means a little bit more! ~Dr. Seuss

Each year about this time my little home office morphs into Santa’s Village South.  This transformation is now in its eighth year and has become a rather significant source of happiness for me. What exactly takes place in this make-shift Santa satellite operation?  Well, quite a bit of imagination, a few late nights, lots of letter writing and a constant feeling of the Christmas spirit.  See, I write letters to children from Santa Claus.  I started doing this years ago for just a few friends and family members as Christmas gifts and over time, it turned into a seasonal home business, albeit, a very small one.  But these aren’t your ‘run of the mill’ letters from Santa.  No, these are extremely personalized and rather long letters that leave a child wondering how its possible for Santa to know so much about them.  Add to that, the various antics and chaos caused by the elves and reindeer in each of my letters and I’m proud to say that my Santa Letters now have a sort of cult following.  I’ve actually had the privilege of writing letters to some children their entire life, beginning when they were maybe just one or two years old and now they are almost ten. I’ve watched them grow up through the online forms their parents complete each year when they order their letter.

Here’s the catch – I only accept the first 200 orders.  This allows me to make sure my letters remain very personalized and never rushed.  Since I’ve been writing to some of these children their entire lives, I have to be very careful that a story about a mischievous elf or a reindeer that likes to wander off and play practical jokes with Jack Frost is never repeated.  So, aLetters From Santa (Roseanna Borelli) copy of every letter I’ve ever written is kept in a file.  No two letters are the same, that alone gives me an edge over the other companies offering this type of service.  There is a family in Georgia that has four children and even though two of them no longer believe in the jolly man with the white beard, they still order a letter for all four of them.  I’ve been writing their letters for five years now. That’s twenty different story lines!  What I really enjoy is trying to connect their letters in some small way each year.  I might write to the youngest and tell her how sorry I am for not writing her letter sooner but Santa had to have a meeting with the Elfin Behavioral Modification Committee to discuss her brother’s refusal to clean his room.  Details like that really bring the magic of Christmas to a child – and to me as well.  I’m about to celebrate yet another birthday but when I begin to write these letters each year, I’m a child again with all the awe and wonder that the Christmas season can bring.

Ok, now here comes the shameless plug.  If you want to visit my website, learn more about ‘Letters From Santa’ or place an order, just visit:

 http://santaletters-us.webs.com/

I hope you’ll also stop by our Facebook page: https://www.facebook.com/SicilianSanta

Letters From SantaI guess you could say that I really do love the Christmas season.  Not the shopping, not the way it has turned into a huge marketing opportunity and I will walk naked on hot coals while yodeling before I will step foot into a mall the day after Thanksgiving. What I love is the magic of the season.  I love how, even if it’s just for a few days, everyone seems a little kinder, a bit gentler.  I love the sounds and smells that fill my home.  I enjoy unwrapping the Christmas ornaments and recalling who gave them to me or how old my daughter was when she made the reindeer out of felt that now only has one eye and a nose that is about to fall off.  I love putting up my Angel tree that began when my little boy was in a coma during Christmas one year and people from all over the country, many I’ve never met, set him Angel ornaments.  

And I love writing letters to children from Santa, knowing that in some small way, I was able to be a part of their childhood Christmas memories.

Roseanna Borelli

“Christmas can be celebrated in the school room with pine trees, tinsel and reindeer, but there must be no mention of the man whose birthday is being celebrated. One wonders how a teacher would answer if a student asked why it was called Christmas.”   ~Ronald Reagan

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We Are All Masters of the Unsaid Words, But Slaves of Those We Let Slip Out ~W. Churchill

Roseanna BorelliIt doesn’t happen often, but every once in a while I come across a little piece of wisdom that strikes a chord so deep inside me that it actually moves me.  A few years ago, while dipping my toes in the teachings of Buddha, I learned about the Three Gatekeepers and how our words must pass through these three gates before crossing our lips or before pen meets paper.  Not long ago and very unintentionally, my written words brought tears to someone very close to me. Since that day, I have vowed to remember the three Gatekeepers and what we must do when choosing our words…

For the words that you are about to speak to pass through the first gate, they must all be true.  In order to pass through the second gate, your words must be kind.  And finally, to be allowed past the third gate, your words have to be necessary.

I think perhaps the reason this hit me so hard is because I have certainly been guilty, on more than one occasion, of not thinking before I speak.  My daughter calls this, ‘having no filter’.  I never speak with the intention of hurting someone, but I have been known to do more talking than listening and there have been many instances where my choice of words was less than impressive.  I now actually keep in mind the Gatekeepers ‘mantra’ before I speak (or write) to someone.  And it isn’t enough to have your words just pass through one or two gates.  They must be able to pass through all three.  I think perhaps this is where we get ourselves into trouble.  We may feel that our words are justified in being heard solely based on the fact that we believe them to be true.  While we may believe our words to be based in fact and accuracy, is it really necessary, for example, to tell your sister that she has put on a few pounds? That statement is neither kind or necessary.  I have been on the receiving end of some very harsh and ill-conceived truths that clearly did not make it past the last two gates.  People like to hide behind that one word, ‘truth’.  Often their perception of the truth is little more than an uninformed opinion.  How wonderful our society would be if those close-minded people also came with closed mouths.  

Roseanna Borelli

Now, perhaps not as hurtful, but still quite capable of damage, are words that are both true and kind, but maybe not necessary. This is where we have to remind ourselves that even though we may feel our words are true and kind, they may not be received that way.  The person who lets these types of words slip out often has an agenda or an ulterior motive for speaking words that really are not necessary.  I try to remember to ask myself before I speak, how will what I’m about to say benefit the person I’m saying them to in a positive way.  If the positive can’t be found, then the words do not need to be said.

Finally, what happens when your words are necessary and true, but lack kindness?  I have experienced both sides of this coin and one left me feeling like a fool for not showing more compassion when writing/speaking and the other left me hurt and even a little broken.  I don’t think we need to dip our every word in chocolate and sugar coat them, but a little kindness goes a long way.   No matter how filled with truth your words are or how necessary it is for someone to hear them, if they lack kindness, they will put the other person on the defensive.   Of course, there will be times when we will have to tell someone something that is sad and/or difficult – so how does kindness fit into that equation.  I think in that situation, kindness means that you have to choose the most compassionate words you are able to.  

Whether spoken or written, words are extremely powerful and the pen isRoseanna Borelli definitely mightier than the sword. Words have the power to bring happiness but also the strength to crush someone’s spirit. They can be used to comfort or to bring someone to tears.   And once said, they may be forgiven, but they will never be forgotten.  Words, even just a few, can bring a smile, cause hurt, destroy, create, criticize or inspire.  

What did yours do today?

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“We must accept finite disappointment, but never lose infinite hope.” ~Martin Luther King Jr.

“Breakthrough DNA Study Opens Door to New Treatments for Mitochondrial Diseases”

I just read those words and my heart leapt – it really did.  Some of you reading this know that my little boy was born with a Mitochondrial disease, Mitochondrial Encephalomyopathy.  There is no cure for this terminal and progressive disease that has left my son unable to walk, talk, sit, stand and swallow.  Almost daily seizures and intestinal issues are a way of life for him. Roseanna Borelli He’s had ten operations and countless hospital stays, some lasting for weeks.  And while a cure may not come in his lifetime, that science is working, and making wonderful progress, on researching a cure put a much-needed smile on my face.  But maybe a cure will come in his lifetime, I’ve witnessed too many miracles where my sweet boy is concerned not to believe in the sometimes unbelievable.  I’m neither an optimist or a pessimist, just a realist – who prays and talks to God –  quite a bit.  I also know that my son has survived comas and high CO2 levels that would have sent even the healthiest of beings on to meet their maker.  I’ve watched him suffer through seizures that seem to know no end, I’ve held his hand for hours on end in the ICU praying for him to wake up.  I’ve cried to God asking him ‘why’, so many times.  But children are closer to God, I really believe that.  And maybe Joey knows or understands more than I do – that wouldn’t surprise me at all.  Maybe my Joey has been fighting so hard for the past nine years because he knew this day would come.  The day when a group of talented medical doctors at the University of Miami Health System, acquired the funding to give mitochondrial diseases the much needed attention and research moms like me so desperately want and need for children like my Joey.

You can read the full article here:

http://med.miami.edu/news/breakthrough-dna-study-opens-door-to-potential-treatments-for-mitochondrial

I read the following words with tears in my eyes from Dr. Carlos T. Moraes, “Although further studies are needed, lowering the mutant mtDNA should be sufficient to produce lasting changes in the mitochondria.  In fact, it is reasonable to expect that a permanent correction of the mitochondrialDNA might be achieved after one or a small number of administrations of mitoTALEN, either as genetic or protein agents.”

This latest breakthrough probably won’t make the evening news and theRoseanna Borelli likelihood of seeing it all over the internet is slim to none.  But to me, this is the best headline I’ve seen in quite some time and it gives me hope.  Sometimes, that’s all we have to hold on to isn’t it, hope.   I hope and pray everyday for my Joey – that he will be full of smiles, the seizures will stay away and the two of us will be able to weather whatever storm is headed in our direction.  There is a Tibetan saying, ‘Tragedy should be utilized as a source of strength.’  I believe that no matter what we are going through, no matter how painful and difficult it is, if we lose hope, that’s our real disaster.

UMDFLogo

To learn more about Mitochondrial Diseases, please visit and support, www.umdf.org

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Friends, Fruit & Facebook

Growing up, we were taught, at the very least, the most basic social etiquette wait for everyone to be served dinner before you begin eating; when you receive a gift, write a thank-you note within 30 days; Arrive on time and don’t overstay your welcome; no picking your nose and hold the door open for others.  But we now live in the year 2013 and judging from many of my friend’s children, good manners, like the fine art of letter writing, are aQueen thing of the past.  Now we have to learn an entirely different type of etiquette – Social Media etiquette, and those waters are murky at best.  Do we have to accept the friend request from our grandmother’s best friend?  How do I tell someone to stop asking me to join them in Bubble Bunny & Bingo Rider (and is it just me, or do those sound like stripper names?) And what about the person who spends all day posting every detail of his/her life along with every argument they have ever had with their spouse?  And then there is ‘unfriending’.  Personally, I think it’s better to just ‘unfollow’ someone than to ‘unfriend’ them.  I have a handful of Facebook friends who spew nothing but their religious and political beliefs 24/7 and occasionally, I do like to read their point of view.  I believe that everyone is entitled to their opinion, as long as it is an informed opinion.  Sadly, that is rarely the case these days.  But to ‘unfriend’ them just because our views sometimes differ seems rather harsh, so I simply set up my Facebook page in a way that their rants, political or otherwise, do not show up on my timeline. I am now free from their ill-researched views and they are none the wiser.

I’m not sure the term ‘unfriend’ was around before February 4, 2004.  That was the day Facebook was launched and with it would follow social media mayhem.  Thanks to Mr. Zuckerberg, we now have friend requests, the ability to see 285 photos of our third cousins step daughter’s baby’s first tooth and we can play ridiculous games such as Diamond Dash & Farmville.  Oh, and let’s not forget the thousands of unattractive ‘fish face’ photos teenage girls post of themselves daily.  It does beg the question, somewhere in the deep blue sea, are there fish making ‘human faces’?

1331090272352_1950104But I digress.  Unfriending someone on Facebook can be a rather sensitive matter.  Not only can it lead to hurt feelings, it can spill over into your ‘real-world’ relationships should the “Unfriender”  live in close proximity to the ‘Unfriended’.  Let’s take this a step further – what if the “Unfriender” is related to the “Unfriended”.  And just for shits and giggles, let’s assume that those two are mother and daughter?  Ooooh, now we are entering the stuff that Lifetime movies are made of….

Suppose for a moment that this mother and daughter had an emotional discussion one morning. The daughter was feeling sad and alone and expressed to her mom how much she missed the way she used to be, before she began ignoring her family, now spending all her time with her iPad – addicted to the ridiculous games on Facebook and ‘liking’ just about everything that her Facebook friends posted.  She no longer participated in family discussions or even took time to call her daughter.  She had even been caught running to her iPad upon returning home one day to give her Facebook friends ‘lives’ so they could continue playing “Diamond Dash’ – that came first now.  Members of the family wondered if they would ever catch a  glimpse of the woman she used to be, before the trappings of all things Facebook now consumed her waking moments.  When the daughter returned home, she was so disgusted with Facebook and the effect it was having on her mom, that she deactivated her account, she wanted nothing to do with any social media site ever again.

The next day, the daughter went about her morning routine but her thoughts kept drifting to her mom.  She found a cute photo that she wanted to share with her mom and thought this might be the olive branch that they both needed.  Immediately, the daughter reactivated her Facebook account and logged in.   However, when she tried to go to her mom’s Facebook page, her heart sunk.  Her mom had ‘unfriended’ her.  “This had to be a mistake”, she thought to herself. How could she ‘unfriend’ the person that spent countless hours teaching her how to use her iPad, how to maneuver her way around Facebook and even took her 6:00 a.m. phone call when she had to know the correct procedure for ‘tagging’ someone in a photo. She must have accidentally hit the wrong key.  The daughter called her mom but there was no answer.  By the day’s end, she knew that the ‘unfriending’ was not an accident.

What the mom didn’t know, despite her granddaughter trying to explain it toOld People & Facebook her numerous times, is that when a person deactivates their account, its as if they never had a Facebook account.  None of their friends can ‘find’ them until the account is reactivated.  This does not mean that the person went and ‘unfriended’ each of their friends.  What I find extremely comical is that in response to her thinking that her daughter ‘unfriended’ her, the mom then went and ‘unfriended’ her.  This is impossible to do.  If I were to ‘unfriend’ my mom, then that’s it, we are no longer friends on Facebook.  She does not then have the option to ‘unfriend’ me as well, as I’ve already terminated the friendship.  It’s like having the last word in an argument, the person who ‘unfriends’ first is basically getting the last word.  However, this was not the case, as all that was done was a deactivating of the account.

All of this is bordering on ludicrous.  But it does show that our behavior, or lack there of, when dealing with social media, can affect our real life relationships – and not always in a positive light. Writing this tonight brought to memory something I said to my daughter when she was less than thrilled that I sent her a ‘friend request’ on Facebook a few years ago.  I told her, “look kid,  I carried you for nine very long months, the last three during the summer time.  You broke my tailbone trying to get into this world, I cooked for you, spent hundreds of dollars on Barbie dolls that ended up naked in less than a week and stopped my car in rush hour traffic to search for your stuffed rabbit after you tossed her out the window, onto the highway – that you ‘friend’ me on Facebook is a pretty small thing to ask in return.” 

She agreed.

Roseanna BorelliPersonally, I would like to go back to when blackberries and apples were just fruits and if we were lucky, homemade pies. We didn’t have Facebook, we had scrapbooks and we only shared them with family and close friends.  And a tweet was the sweet little sound a bird made.

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“When the people fear the government there is tyranny, when the government fears the people there is liberty.” ~Thomas Jefferson

Roseanna BorelliI woke up this morning to this headline from the New York Times:

“U.S. Postal Service Logging All Mail for Law Enforcement”

Was I shocked?  No, not really.  I was more surprised that this was being brought to our attention.  I mean, isn’t this something that the ‘secret court’ should have kept secret?  We didn’t even need Eddie Snowden to alert us to this latest breach of our privacy.  Oh, but let’s not get outraged and upset over this, because our government must protect us from ourselves and they only have our best interest at heart.  And to do that, they have a little thing called the “Mail Isolation Control and Tracking program”.  This formerly clandestine program allows the USPS to take a picture of the outside of  – are you ready for this – “every piece of paper mail that is processed in the United States — about 160 billion pieces last year.”  And there’s more – no one knows how long the government saves these images.  Well of course no one knows,  our government keeps us on a need to know basis and apparently there is quite a bit they wish we didn’t know.

Roseanna BorelliI’m going to go out on a limb with this next question, but doesn’t a little something called the 4th Amendment come into play here?   How is our government allowed to take a picture of  every piece of our mail and store it in a database so that they can search every record of mail we have sent and received – and do all of this WITHOUT A WARRANT!   Pretty sure that this is a clear violation of the 4th amendment and I don’t think this is even close to what Thomas Jefferson, James Madison, Thomas Paine and John Adams had in mind when they wrote our Constitution.

And while we’re on the topic of the 4th Amendment, did you know that according to legal precedent, the Fourth Amendment, you know, the one that tells of our right to be free from unreasonable searches and seizures, doesn’t apply along the border of the United States.  And  you should also be aware that the government has defined the borders of our great nation to be 100 miles inland from the nation’s actual border.  They even gave it a cute little moniker, “The Fourth-Amendment-Free Zone”.  So basically,Roseanna Borelli 2/3 of the population of the United States are living in an area where the Fourth Amendment does not apply.  Do I have anything to hide, no, not at all. But just because I have nothing to hide doesn’t mean I want people looking at it. Innocent facts can be twisted by crusading prosecutors – trust me on this.

I suppose if the government sees my subscription renewal letters from a few Italian magazines I receive, along with Cosmopolitan and a gardening magazine, they may come to the conclusion that I’m a secret agent for the Italian Republic, leaking classified information to Giorgio Napolitano on how to grow oregano while wearing stilettos.  Yes, I’m a lethal threat to society.  Hell, at this point, George Orwell is looking more and more like a modern-day Nostradamus.  I’ve been somewhat of a ‘closet conspiracy theorist’ for some time now and unfortunately, I now see that most of what I have long suspected is true.  People, you need to stop relying on Fox News, CNN, MSNBC, etc., and do your own research.  Of course, NSA will know that you are doing this, so proceed at your own risk.

It seems like the USPS slogan really is true – “We are mothers and fathers. And sons and daughters. Who every day go about our lives with duty, honor and pride. And neither snow, nor rain, nor heat, nor gloom of night, nor the winds of change, nor a nation challenged, will stay us from the swift completion of our appointed rounds. Ever” – but only after we photograph your mail and send it to the government. Democracy and privacy are dead my friends. Call this what you want…Totalitarianism, Fascism, Plutocracy…. but our Nation is not at all what its founding fathers Roseanna Borellihad hoped it would become. The government – state, federal and judiciary – are willfully disregarding the 4th Amendment.  I can understand the need to cooperate with law enforcement when and if it is deemed necessary, but what’s the point of having a Constitution if the government can pick and choose when to be subject to it?

I’m sure all those who sacrificed their lives or limbs fighting for America and our freedoms over the last 200+ years would be thrilled to know this is what they suffered and died for.  It’s going to be rather difficult for me to celebrate much of anything today – we as a nation are under total tyranny. Our Constitution and Declaration of Independence have been left to interpretation by complete morons (elected servants) who have ripped it to shreds.  Yes, I will still put a patriotic t-shirt on my little boy and later this evening we will watch fireworks from a distance while listening to the radio play a variety of uplifting songs about this great nation of ours, but it will all be done with a heavy heart.

Happy Independence Day.

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Don’t Mess With Nonna

NonnaTwo houses down from mine is an older couple – the wife is a New Yorker and the husband is the epitome of a southern gentleman. They are proof that opposites sometimes do attract.  The wife spends almost every morning on their back deck and she is a rather loud woman, let me also add, she’s full-blooded Italian. Her conversations are always a mix of Italian and English – and quite often, comical.  When I’m watering my plants in the morning, I can hear her on the phone with her daughter and it’s safe to say that she does not care for her son-in-law.  I know this because I’m well versed in Italian slang and various Italian defamatory remarks and this woman has used them all in describing her daughter’s husband.

Their grandchildren are visiting for a few weeks this summer and while I was outside earlier this morning, I could hear her going at it again, this time with her granddaughter, who might be all of eight years old.  The guilt this woman can serve is the kind only found from an Italian/Catholic upbringing (I’m speaking from experience) and this woman has mastered it.   I poured a cup of coffee, sat on my deck swing and this is what I heard….

Nonna:  Why is your finger in your nose?  God gave you ten fingers and he didn’t want any of them up your nose!  Good luck getting a date…

Granddaughter:  My fingers aren’t in my nose and I don’t want a date…

Nonna:  So now I don’t know what a nose with a finger in it looks like?   What? I’m stupid?!?  And good you don’t want a date, because boys don’t date girls with fingers in their noses.  

Granddaughter:  I wanna go home

Nonna:  You know what else, you gonna have the nose of an elephant now.  That’s what’s gonna happen – elephant nose and no date.

Granddaughter:  I wanna go home

Nonna: Sit down, you need your hair brushed.

Granddaughter:  You’re not fair

Nonna:  Life’s not fair, where’s the damn brush?

Granddaughter:  You’re not combing my hair, I brushed it yesterday and it hurts when you do it.  

Nonna:  You have to suffer to be beautiful, sit down…

Granddaughter:  Well why do I need to be beautiful since I have an elephant nose and never dating?

Score 1 for the granddaughter.

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Often the simplest of things bring the most happiness…

In Paulo Coelho’s book, The Alchemist, he writes, “The simple things are also the most extraordinary things, and only the wise can see them.”  I truly believe that, well, I have believed that for the past nine years.  My little boy, Joey, just celebrated his ninth birthday and he is among the wisest I know.  You see, Joey just discovered pinwheels.  Yes, pinwheels.  A rather simple toy by today’s standards. It’s certainly nothing fancy, as it is often made of just paper or plastic curls, attached at its axle to a stick by a pin.  It doesn’t require batteries and it can’t even be plugged in.  In fact, to get it to do anything requires a summer breeze or it must be blown upon by a person.  But to my little guy, it was pure magic.

This latest discovery of Joey’s happened by chance, as do most unexpectedJoey Discovers Pinwheels things.  There was a pinwheel in the doctor’s office and out of sheer boredom, I picked it up and began spinning it for Joey.  The look on his face when he saw all those bright colors spinning around was one of the most precious expressions I have ever seen.  Many of us have had the distinct pleasure of experiencing something through the eyes of a child, but when your child is disabled and all of the sudden he finds immense joy in a toy or a song or anything for that matter, well, it makes you stop whatever it is you’re doing and take notice.  I can tell immediately if something is going to really hold Joey’s attention or if it is just going to be a momentary infatuation.  After 45 minutes of spinning that pinwheel for Joey, I knew his love affair with pinwheels had begun.  As we sat in the doctor’s office waiting, I watched Joey look with wonder and then smile so brightly at this toy.  Who knew a toy, that  can be traced back to the late 1800’s, would bring such happiness to a little boy, 140 years later.  Joey cannot walk, talk, sit or stand, but he could reach for that pinwheel and smile and coo as it spun around and around.  So you see, it’s true, the simple things in life are very often the most extraordinary things, at least, in our family they are.  I’m in constant wonder and amazement at what my little boy teaches me every day.  All children, regardless of their abilities, have a sense of wonder and awe that we tend to lose as adults.  I’m so blessed that I get to relive my childhood through my son.

As I sat in the doctor’s office waiting – and spinning the pinwheel – I immediately began planning how to incorporate Joey’s new found love of pinwheels into his everyday life.  I tend to be like a bull in a china shop with my ideas and projects.  Once I get a notion or thought in my head, watch out – because I will do whatever it takes to make it happen, especially if it involves my little guy.  It’s my best and worst trait.  Ok, it’s one of my best and worst traits, but that’s another story for another day.  There are a handful of things I’m passionate about, first and foremost, my children.  After that, gardening.  PinwheelsSo it didn’t take long to come up with a plan that would combine pinwheels and petunias.  Right there in the doctor’s office on that tissue paper they use to cover the examining table, I actually sketched a garden that would be filled with pinwheels and flowers – complete with a path for Joey’s wheelchair.  I could feel the adrenaline – yes, I was that excited.  If you aren’t the parent of a child with special needs, you will not understand what it’s like to stumble across something that your child loves.  Joey cannot tell me, “mommy, I really love (fill in the blank) can we go do/buy/see that”.  I have to rely on trial and error.  I have to hope and pray for those moments, like the one last week, where we discover pinwheels completely by accident.  And when that discovery happens, you will do everything you can to encourage it, to repeat it, to make it a part of your child’s life.  At least, I do.

This new garden already has a name, “Il Giardino dei Girandoli di Giuseppe“.  My next step is to get pinwheels that are weather proof to be placed in the garden.  I’m going to ask friends and family to help make this happen as I feel it will add sentiment to the garden and make it special.  I truly feel like a child on Christmas morning right now, I cannot wait to begin this latest project and then watch Joey’s face when he sees it for the first time. So yes, while having a child with special needs can be exhausting, frustrating and heart breaking it can also be inspiring, magical and breath taking.

I’m learning that not much about life is perfect.  There is no such thing as perfect kids, we don’t come from or have perfect families or perfect partners, perfect jobs rarely exist, but every once in awhile, we do get a perfect moment.  I think maybe the trick is to recognize this and to not only hold on to the memory of that perfect moment, but perhaps we need to try and figure out how to make more of them.  God willing, that’s what I’m going to do.

________________________________

“And I learned what is obvious to a child. That life is simply a collection of little lives, each lived one day at a time. That each day should be spent finding beauty in flowers and poetry and talking to animals. That a day spent with dreaming and sunsets and refreshing breezes cannot be bettered.”

~Nicholas Sparks

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Sweet Tea, Storms & Savoir-Faire

Old Italian Woman GardeningAlmost two years ago I decided I wanted a vegetable garden.  I was tired of growing tomatoes in large pots on my deck.  I’m Italian/Sicilian and we’re supposed to grow our own veggies and make homemade pasta sauce – and I do, but now I wanted to do that on a larger scale.  And I wanted to one day be the proverbial little old Italian lady in the neighborhood that spent all day in her garden and was always up to something, albeit in stilettos and a sundress!

With my flower garden just about complete I began researching how to build a vegetable bed.  I didn’t like any of the ideas I saw and the ones I did like were far too expensive.  So, like many times before in my life, I set out to do it ‘my way’.   I went to the lumber store and let my imagination run wild.  I asked two employees for some help and explained to them what I wanted to do.  One gentleman was very eager to assist me and began giving me quite detailed instructions on how to build a vegetable bed that I’m certain would have resembled the Taj Mahal.  Another employee suggested I just visit the produce section at Wal-mart.   Somewhat discouraged, I thanked them for their time and decided I was going to have to do this completely on my own.  As I was leaving, I saw a large pile of wood outside that I thought would be perfect for my project.  They were landscape timbers and because they were ‘less than perfect’ they were marked down in price.  Now, I am a master in the fine art of negotiating, I actually enjoy it quite a bit. I’m also a single mom on a budget tighter than bark on a tree, so I was going to have to really work my magic to get the 15 landscape timbers I needed for my vegetable bed for less than $1 each.   I think it was Lord Chandos that once said, “Flattery is the infantry of negotiation.”  And I would have to agree.

Before I put my negotiation skills into high gear, I made a quick trip to McDonald’s.  I had a gift card that someone had given me and I used it to buy three large sweet teas.  If you aren’t from the south, Sweet Tea is considered the “house wine” of the south and many will argue it is the only way to drinkSouthern Sweet Tea tea.  I’m a California girl, but I have to agree, there is no other way to drink tea. None.   So, with my latest acquisition in hand, I returned to the lumber store and went up to the three gentleman working outside.  Before I continue, let me add that if you approach three men working outside in July, in Alabama where we have humidity higher than a 1950’s beehive hairdo and you are bringing them sweet tea with ice, you could ask them to do just about anything and they will say ‘yes’.    I gave them their drinks and explained that I needed 15 landscape timbers.  They showed me the ones that were in perfect condition but I explained that I wanted the ‘misfits’ – the ones no one else wanted.  One of the guys laughed and commented that he had seen me in here before, and how I always head to the back of the store where the almost dead plants are.  He wanted to know why I did that.  I explained to him that as long as there is still a sign of life, then they deserve a chance.  I suppose it’s a little silly, but it makes me sad to see all those plants sitting on racks about to be tossed away because they aren’t as pretty as some of the other ones.  And I enjoy bringing them back to life, often in as little as a week. I also see it as a challenge and I most certainly love a challenge.   If you have seen pictures of my garden in my previous blog posts, I want you to know that all those flowers, every single one, were almost on their last legs when I planted them – yes, even the roses.  I have bought plants that were originally priced at $15 to $20 for $.75 – and some I have been given for free.  They are now all blooming and beautiful.

The men told me they wouldn’t feel right selling the ‘misfit’ timbers to me because in some way they were damaged.  I told them not to worry about it, that I knew what I was doing (I didn’t) and then I asked them to make me an offer I wouldn’t be able to refuse.  They laughed and asked if I had ever seen “The Godfather”.  I showed them the Italian flag sticker on the back of my truck and jokingly told them I had cement blocks and rope in the back and asked them if we could hurry this along or they would be ‘sleeping with the fishes’.  When all was said and done, I left with twenty not so perfect landscape timbers – total cost: $5.  To this day, they refer to me as the ‘sweet tea lady’ – it’s funny how some friendships are formed in the most unique ways.

That was almost two years ago.  Those timbers sat in the side of my yard through countless rain storms and through many of my life’s storms, just waiting to be put to use.  And last week their time had arrived.  Armed with a hammer and some very large nails, I set out to build my vegetable bed.  I had planted some vegetables from seed earlier in the year and they were more than ready to be put into the ground.  I learned very quickly that hammering nails the size of cigars into wood takes a lot of muscle.  My project was going to be a little more labor intensive than I thought.  From start to finish, it took me three days to complete and as much as I hate to admit it, the last part of my Roseanna Borellivegetable bed was completed by a few neighborhood kids that I have known since they were five years old.  On their way home from school, they heard me ‘talking’ quite loudly to one of the nails that refused to go in straight and  they came over, while laughing, to see what was going on.  Before I knew it, the negotiation tables had been turned.  They said if I made them baked ziti for dinner, they would finish the vegetable bed and mow my lawn, front and back.  I’m no fool, I knew I was coming out on the sweet end of this deal, so I agreed, of course, letting them think they were the winners in this negotiation.

My vegetable bed is now complete and I can’t wait to construct a second one very soon.  I’ve planted three varieties of cherry tomatoes, some red bell peppers and of course, lots of herbs. There is even a climbing rose-bush as the back drop.  At the request of the boys that helped, I’ve also planted spinach and the second bed will have watermelons.  I think that’s what I’ve enjoyed most about this project, how it got the kids involved.  They feel a sense of accomplishment in having helped me that day and I’ve seen them walk past the vegetable bed on their way home from school to see how the plants are doing.  You just can’t get that kind of feeling from a video game.

I know not everyone enjoys gardening, but everyone needs to have that one thing that they can just lose themselves in.  For me, gardening is like playing – I’m a child again.  I am curious, creative, messy, I try new things knowing that if it doesn’t work out, it’s really no big deal.  Why do we lose that as adults?  We need to tap into our inner child every chance we get, I don’t care how old you are.  Two days ago it was pouring rain and I was sad because I wanted to be outside in my garden.  And then I realized, so what if it’s raining, I’m not sugar, I won’t melt.  So out I went in the rain and walked around my garden in bare feet getting soaking wet – and I loved it.   I picked some roses, checked on my newly planted vegetables and even purposely stepped in some puddles – itPlaying in the Rain was fun – the silly kind of fun that I don’t think adults participate in nearly enough.  But I do, every chance I get.  One of my favorite quotes by Maya Angelou, and one that holds quite a bit of truth, is this, “I’ve learned that you can tell a lot about a person by the way (s)he handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights.”  Now, all of you know how I handle a rainy day.  When I arrived in Italy years ago and a day before my luggage did, I used that as an opportunity to put my limited knowledge of the Italian language to use and set out on the streets of Rome to find all the things I would need for the next 24 hours.  I did this alone – my first time in another country and I didn’t know a soul.  It was the most empowering and liberating experience I’ve ever felt and I loved every second of it.  And tangled Christmas lights, let’s just say that I rival Clark Griswold in that department and that’s definitely another story for another day.  Maybe a rainy day after I’m done splashing in the puddles.

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