Being Me

Another day in the life of an Angel mom.  No big deal right?  WRONG!  I am feeling overwhelmed with feelings of gratitude and humility that I am on this journey with such an amazing young boy, Scotty Sell.
I am not sure what I have ever done to deserve his love or the honor to be his mother.
The walk is not always easy with an Angel; but it is always rewarding.  The reward is unconditional love that nobody in this universe will ever know unless they are loved by an Angel.
My son has Angelman Syndrome.  He has a few words to speak, but his eyes and smile speak volumes: more than any words can ever say.

His eyes tell me that there is a God.  There is always HOPE.  His eyes reveal to me the pureness of true love and content.  His smile lets me know he is happy that I am his mom.  That smile tells me that everything will be OK!  His face reminds me that God is perfect in every way and He never makes mistakes!

Being loved by an Angel is an honor and privilege that only a select few are chosen to experience.  I, for one, am eternally grateful that God trusted me with one of His Angels here on Earth.

http://www.youtube.com/watch?v=S8mVZa02f8k

YOU CAN'T GRIEVE WITH ANGELS ♥

So tired, but much more love to give

So much more life to live..

Not ready to let go

As he lay on her breast...she knew

It was time for her to go......and him to stay

'Til we meet again, my Sweet

YOU CAN'T GRIEVE WITH ANGELS

One last breath...her body was gone..

Spirit lives on forever

YOU CAN'T GRIEVE WITH ANGELS

You can see it in his eyes

Hear it in his heart

Feel it in his laughter

She lives on in HIM

YOU CAN'T GRIEVE WITH ANGELS

Never before has the tears flowed so freely

Never before has she loved so deeply

Why now..why so late…why not before

YOU CAN'T GRIEVE WITH ANGELS

In those last breaths…

Her heart ached with the love she forgot to share

The love that she held onto so tightly…

 YOU CAN'T GRIEVE WITH ANGELS

He will always know love 

 Be Love

He is the light of the world

He is the joy you forgot

He is the pureness of one heart

One love

One light

YOU CAN'T GRIEVE WITH ANGELS

A teacher of how to live

How to love

How to be

No sorrow

No pain

YOU CAN'T GRIEVE WITH ANGELS

Students of his heart As it beats with no remorse

Beats only a force of clarity of what is real

What is true

What is

What was

And what is to be

Her last is His eternal

YOU CAN'T GRIEVE WITH ANGELS

Never left to chance

There is  purpose in every breath

Even death

YOU CAN'T GRIEVE WITH ANGELS ♥

(inspired by my angel)

WANTING

Can’t stop the tears

Too many fears

Fading into oblivion

Nothingness is her new beacon

Intolerant of her pain

Nothing left but disdain

What to do? Where to go?

Only she will know

Turning 45....

When and how did 45 years slip by already?! I am having an interesting reaction to my upcoming birthday. On July 11, 2012 I will be 45 years old. On a good day, I feel 25 and look 35. On my worst day, I feel 100 and look 99.

All kidding aside, I am NOT reacting well to this "over the hill" cliché. I feel I have so much more about myself that I still am learning, adjusting, changing, killing, and bringing back to life.

I have many memories of my childhood. I just wanted to "matter" to anyone/to everyone. I believed that children didn't matter as much as adults. Our opinions were ridiculed. Our desires were dismissed. Our fears were mocked. Our dreams were scoffed.

I couldn't wait to be a grown up "to do whatever I wanted/whenever I pleased. Well we all know that is NOT always how adulthood works. I have lived for someone else my entire life. In the beginning, it was for my parents love, approval, and praise. In the middle, it was for my boyfriend's (who became my first husband) approval, love, and desire. Now, it is for my husband's (second) comfort and love. I also have lived the past 20 years for my children. I remember I couldn't wait to be a Mommy, to be all the things I craved from my own mother all those years: unconditional love, encouragement, and support.

I find myself in a precarious situation as I turn 45. Actually, it has been transpiring for a few years now. I lost myself along the way. I gave up every dream, ambition, hope, and belief that my life will ever be what I desired it to be/or what it was intended to be.

I have taken on everyone's hopes and dreams for me. I have encouraged and supported all those around me, I forgot to matter: to others and to myself.

My desire is the same as it was so many years ago as a child; TO MATTER. I am not having pity party or seeking sympathy, I am sharing what happens to a girl who all of a sudden is turning 45 years old.

I have made a declaration this year to not be anyone's emotional doormat any longer. With this declaration and promise to myself, I have had to fight for me more than I have ever fought before.

I am still fighting those around me and myself. You ask: "what in the world would you be fighting for?" Since you asked, I will tell you. I am fighting for my right to be the real me. I mean the imperfect me. I have tried to be a version of what pleases others all my life, and obviously that is not working for me!  I am fighting to remember and to find the REAL Rita in here somewhere.

I tend to curse when I am excited or angry or just because a curse word feels good coming out. I tend to get angry when I see and believe there is an injustice against someone or a group of someones. I cry at some commercials. I cry as I type my blog. I cry as I watch my children sleep. I cry as I think that my children are not living out their dreams. I cry when my sons succeed, I cry when they fail. I cry out of pride. I cry out of frustration. OK, so I am a feeling, emotional, crying mess much of the time.

I love God and Jesus! I love Alternative Rock music. I love helping others. I love to encourage and support others on their journey through life. I hope young people can and will learn from my posts and blogs and to NOT make the same mistakes.

I desire to inspire others, but first I must remember how to inspire myself.

I love to watch anything to do with Colin Farrell. I have fallen in love with Jared leto and 30 Seconds to Mars. I have this illusion and delusion that I will meet Jared someday and he will actually accept my invitation to attend the Foundation for Angelman Syndrome GALA this Dec. 1 in Chicago. I am deluded enough that if he sees my YouTube videos I have made of my Angel rocking out to his music and of Angels gone too soon, that he will be compelled to support a fellow Angel parent, Jared's friend, Colin Farrell. I actually believe that I can convince Jared to give up his time and of himself to spend the night with Angel families (and me).

I dream of a day that I matter enough for someone like Colin Farrell and Jared Leto to take notice and say, "hey, that woman is crazy but I love her spirit and her heart".

I would love to move out of Buffalo, NY and go to LA, live by the water, start a new life.  Hey dreams/fantasies...the line is so thin ;)

I have more work to do on me.  Steps have been taken to believe that I matter.  I work out every day for an hour on the elliptical, I am eating healthier, I stand up for myself, I stand up for what I believe is right, I am back in school to get a Doctorate in Education (hopefully to open a school and program for children with disabilities birth and beyond 21), and I am actually going to take acting classes this fall to fulfill my childhood dream of performing.

http://www.youtube.com/watch?v=hlgzFH-MJsQ

Crazy?!  Maybe, but I have remembered to dream big again…as I find myself in this journey, I hope you are encouraged to believe that you MATTER!

From this

 To This...look what 45 years can do to a person

Behind the Smile: a thank you poem to 30STM

Behind her smile are many secrets

But she will never tell

Kept far away…from her mind’s eye

For if not, she will die

The pain she will not bare...she not dare…

Stand firm in the façade…to go on

Behind those eyes are the lies

Delusions to carry on

When will she ascend to the place she belongs?

What will it take to move on?

A voice….a word….a song

For all the lies are no more

Dreams are waiting to be claimed….

They will be heard….

Beams of light from her face….

Dreams will help her take her place…

The above poem was written in response to what a music group/rock band named 30 Seconds to Mars has done for me. Bizarre! Right? Wrong! Have you listened to their lyrics? I mean really listened? Have you listened to their message? I mean really listened? It is easy to hear their music, but have you looked and listened beyond the occassional "F" word?



Jared Leto, Shannon Leto, and Tomo Milicevic are the members of this band that I seem to be completely in love with. They call themselves 30 Seconds to Mars.



Some of you know me as a devout Christian (was raised Catholic than started to attend a more Pentecostal church these past few years). I believe in God the Father, the Son, and the Holy Ghost (the Trinity).



So if I am a Christian why in the world would I listen to secular music? Is this not to be considered a sin? I ask this: "who decides what is sin and not sin?" If you are a believer, your answer would be God decides what sin is. We are all sinners. Each and every one of us. The best we can do is to love and do our best to be kind to one another during our time on this earth.



I have been disappointed by priests, pastors, elders, Christians, so called believers in Christ my whole life. The hypocrisy, the judgment, the failure to show and live love and mercy. God is a god of mercy over judgment.



I was in a place of self discovery and awakening when I first heard a 30STM song. It was Closer to the Edge. I literally cried. My entire life, I was "not enough" for anyone. I wasn't thin enough. I wasn't rich enough. I wasn't a Christian enough. I can go on forever. I will spare you the tedious task of telling you how I have been trying to be someone I am not supposed to be. All this time, I have hidden the real me. I have been a people pleaser for 44 years.

If you are young at reading this, I implore you DO NOT MAKE the same mistake. Embrace who you are and make NO apologies for it.

I listened to every single Mars song ever recorded. I have spent a small fortune on ITunes. I have watched every YouTube video on this band and these men. I have watched every movie and TV episode Jared Leto has ever been in.

God has used a rock band to finally reach me at a level no one has been able to before. Bare with me here, in the bible there is a scripture in the book of Numbers that God actually uses a donkey to speak. Hey, if God can use a donkey, who says he can't use Jared, Shannon, and Tomo? Who says God can't use you or me to speak to people?

I love this band/these men, because they are real, sincere, and they love what they do and who they are. There is NOT one false pretense about them. You either love them or you just don't "get it". I love them! It may even  be a bit scandalous how much I love them and appreciate the message they are living. 

 I workout everyday for 60 min and only listen to Mars music.  Oddly, I have cried during my workout.  It has been such a healing and cleansing experience to take control of my life and health and to listen to these words that resonate so deeply within my soul. The conflict between good/evil, light/dark, the conflict within us all of finding ourselves and loving what we find. 

I have always told my sons to dream big, work hard, never give up, never back down, and always stand firm in who you are! Then here I am listening to a band giving the same message. I realized that how can I tell my sons this message but fail to live it myself. Talk about HYPOCRITE. I have forgotten my dreams. I have been living everyone else’s' dreams for me.

Because of Mars, I decided to take control of my life. I started working out. Eating healthier. Living in the moment and not  giving a shit what others think of me! I like the real me. ♥

My youngest son, Scotty is 10 years old and has Angelman Syndrome. He also has fallen in love with this band. He watches their videos (the appropriate ones ;) and listens to their music with me. He loves to rock out to Closer to the Edge and Search and Destroy the most. He absolutely loves to watch Shannon in action. Scotty is fascinated with the drums

.

Finally, I love the Echelon. Not sure if I can correctly call myself a member as of yet. But I have to tell you, I have already been welcomed by so many. The work that Mars and the Echelon are doing for the betterment of mankind and this earth is beyond commendable. This is what God has taught us to be. Living a life of love, generosity, compassion, mercy, and grace. Jared, Shannon, Tomo, and the Echelon are living proof there is a God and He will use any us to reach the desperate and the lost.

WHAT REALLY MATTERS

As I lay here  with my 10 yo son, Scotty (who has Angelman Syndrome)  as he sleeps with a leg on my stomach and his hands on my head...he just can't get close enough tonight.  I am unable to sleep.  Angel parents are used to sleepless nights for so many reasons:  our angels like to have "parties" through out the late hours/they tend to have an increase in seizure activity at night/or they just won't go to sleep 'cuz that is the fun of being an Angel.  Scotty used to sleep in his own bed for the past 9 1/2 years, however for several months he has had anxiety and needs to sleep next to me (on top of me is more like it).

Some nights I complain, some nights I wish he would go back to his own bed, but tonight, I am thankful he is next to me.  It is a reminder of what really matters in my life.

He matters, his happiness matters, his health matters, each breath he takes matters.  My heart is heavy once again because another Angel, Kelce, has been put into a medically induced coma to stop her seizures. due to complications and infections, her devoted family has made the heart wrenching decision to no longer have her on life support.  This is an incomprehensible task that many Angel families have faced through the years.  It is a moment that each of Angel parents dread, fear, and worry about.

I have never met Kelce, but I have grown to love her as my own because this Angel community of ours has the unique way of loving and giving of ourselves like no other.  We understand each other.  We don't need to meet in person to love one another.  We have facebook, email, text, notes, and phones to connect with one another.  Sometimes, words don't even need to be spoken.  We just know we are loved and our Angels are loved.

I have always been a person who prayed.  However, I have never prayed so much in my life as I have the past few years since I. became a member of this incredible family of Angels and their parents.  

When an Angel passes to earn their heavenly wings, a piece of every Angel parent's heart goes with them.  I lay here  with such a heavy heart that I cannot breathe.  I pray for a miracle tomorrow for Kelce.  I pray that no matter what happens, that Erin MacEachern Hazelton and Janet Santos MacEachern and their family know that they are not alone.  I pray that they receive supernatural strength and courage to get through this.  I pray that they feel all of our love surrounding them and Kelce.

So what really matters is not if my son sleeps in his own bed, is ever potty trained, or if he pulls my hair, what matters is that he is here next to me, sleeping, breathing, and healthy...for now.

Why I Love Colin Farrell

I know most men, including my husband just rolled their eyes.  Please bare with me and keep reading, the reasons might not be the obvious ones.

If I am to be honest here, I have never seen a movie that starred Mr. Farrell until January 2012.  I occasionally saw a picture of Colin here and there with the headlines:  "Bad boy of Hollywood" or something to that regard.  In passing I would glance at the picture, and think to myself, "hmmm, he is handsome", but would go on with my day.  When Colin's career really started to take off, I was in my own dramas.  The dramas of divorce, raising 2 small boys on my own, moving from Minnesota back to my home in Buffalo, NY.   Experiencing the drama of failure and starting over, I really didn't have much time to pine over some hot, sexy, brooding Irishman.

In 2001, I remarried, and in 2002 I had my third son.  Scotty was different from the onset of pregnancy.  A very high risk pregnancy, lots of bed rest, and many scares of losing him before he was born.  Let's fast forward, in 2003, at one year old, Scotty is diagnosed with Cerebral Palsy and Epilepsy.  Many doctors, specialists, and neurologists later, he was finally correctly diagnosed with Angelman Syndrome in 2009(at 7 1/2 years old).  Angelman Syndome!?  WTH...All I knew about this syndrome was that the children flap their hands all the time.  I was wrong, that is just one of the possible traits.  My son is a textbook case of AS.  He is Del + and has 97% of the symptoms and characteristics of AS.

I am a mom to 3 very beautiful and unique sons.  They all have their own special needs.  We all do.  However, Scotty's definition of special needs was a bit deeper than what yours and my needs might be.  I felt so very alone in the day to day caring of my son.  "Nobody understood or got what we were going through", or so I thought.  I was introduced to this incredible hip thing called 'facebook'.  My older children were mortified that I signed up and had my own account.  As a mom, I must admit, it was to stalk and snoop on my sons' pages to learn things I didn't want to know and things I should know.

FB turned out to be the catalyst to finding a community that I am forever grateful for.  The Angelman Family..we are a hodge podge of people: parents, grandparents, aunts, uncles, and siblings of individuals with AS.  We come from all over the world and all walks of life.  We are teachers, doctors, construction workers, business owners, philanthropists, full time parents, nurses, athletes, and even actors.

Yes, this is when I fell in love with Colin Farrell.  I was introduced to him through Foundation for Angelman Syndrome Therapeutics (FAST  www.cureangleman.org).  I watched him on Ellen, Letterman, Leno, and any other talk show I could find on Youtube.  I met him in person at the FAST Gala on Dec 3, 2011.  He shook my hand, I kissed his cheek.  We spoke briefly of our similar experiences of the wrong diagnoses for our sons.  His son, James is one year younger than Scotty and was also misdiagnosed with CP.  I learned in that brief encounter that this man is as humble, loving, caring, and genuine as they come.  I did my best to NOT be that stalker fan.  I contained my composure, I was as reserved as I could possibly be.  However, later on telling everyone else how I kissed his cheek..I sounded much like the 16 year old girl with a mad crazy crush with the screams/screeches and all.

Colin spoke at this GALA, and there was not a dry eye in the room. As he talks of his journey with his son, James, Colin's voice trembles.  He spoke from the heart and soul of what it is like to be a father of an Angel.  He spoke words and sentiments that all the Angel dads (and moms) feel and experience every day.  He spoke of how his son has brought him to be a better man.  That his own son is really raising him with his tremulous hand.  I could not contain my tears (and some embarrassing sobs).  My husband, who was an avid drinker also shared a similar story as Mr. Farrell.  Giving up drinking and working at becoming a better man.  A man and father their angels deserve.

I can tell you all the obvious reasons why I love Colin Farrell.  I have watched every single movie this man has been in.  I had quite the Colin movie marathon this month.  As I watched these movies, I got to know this man, actor, father, person on a whole new level.  He is an incredible actor with great range and depth.  He is believable in every role he has played.  His eyes can describe his emotion without speaking a sound.  He is fearless in every roll.  He bares his soul. ( May I mention, that he bares more than his soul in some roles :).  He is very handsome, sexy, and quite the impressive actor.  However, these are not the reasons why I love this man.

I love Colin Farrell for the same reason I love my husband and other Angel dads.  His commitment to his Angel and his family.  His love and pure admiration for his Angel.  His dedication to make a difference in this world to inform others of AS and to move forward in sharing some intimate moments in his life. 

Colin like so many fathers of Angels wear their hearts on their sleeves.
 They love with all of their might, they advocate, they protect, they love, they live to see a better life for their Angels.  Some of these dads are doing it alone, some have help, and some have lost their Angels too soon to seizures. 

I love Colin Farrell because he is a man and a father who loves deeply.  He (like other Angel dads) is imperfect, human, yet open, and transparent:  He is like so many other Angel dads, fearless.

This is for all the Angel dads out there.  Sending you love, honor, and respect.