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.

oh so humbled

In the darkness, there was hope.  In the despair, I found love.  In the lies of my mind, I found the truth.
I am not proud of myself for breaking, however, I am boastful of a loving God who has shown me grace and mercy.  I knew my husband loved me, but through these past few weeks, I have found that my hubby loves me UNCONDITIONALLY!


God has restored my faith in hope and love.  I am a girl who has grown into a woman who happens to be a wife and a mother.   A wife and momma who found herself in a place of destruction.  I am thankful for all of you who reached out to me (us) in our time of need.  On the surface, it may have appeared to be a material need.  In all honesty, it was a need of human kindness and love.  My husband, children,  Angelman family, and my new church family really showed me what love is.  Love is given freely.  Love is not a thing or object.  Love is an action.  You all acted in and out of love and I am forever humbled by your hearts.

Thank you.

Where is God Amongst the Crazy?

1/31/2012

I met Him in the psychiatric triage unit at Buffalo General Hospital on 1/30/2012.  He was in the eyes of a 53 year old dad/ grandpa who hears voices that tell him to hurt himself.  He was in the heart of a 43 year old woman who cuts herself when she is anxious.  He was there with a teen addict who recently was hit by a car and now suffers from daily seizures.  I saw a glimpse of Him in a married woman’s voice as she told of a night of too much drinking and taking 2 pills she knew she should have not taken.  Even a homeless woman who claims to see demons and wasn’t sure if we were in hell or limbo or waiting to be reborn.

I am nothing more than a married woman with 3 sons.  One happens to be an Angel on Earth who has changed my life forever.  On this day, I broke.  The world succeeded and I fell.  The white flag was flailing.  With all the responsibilities of a mom to two strong willed sons and a mom to an angel, wife, business owner, and student, I finally waved my arms in defeat.  The weight of finances and their lacking, the nut cracked.  That nut was me. 

I normally show a strong front and a smiling face.  Unfortunately, I forgot to do one simple thing.  I forgot to let go and let God lead me.  I forgot that I was loved.  I forgot that I wasn’t alone.  I believed the lies in my head and heart that nobody cared.  I believed the lies that I had to handle everything on my own.  I believed in the fatal thought that there was no hope.

God can and does work through every situation.  I regained my faith and hope amongst many other psychiatric patients waiting to be evaluated to determine if we stay or go.   As I sat there waiting many hours to be interviewed and evaluated, I tried to avoid eye contact and sat in a corner.  I looked my part of a mental health patient.  

There was Wendell pacing back and forth waiting for me to look up to notice him.  I wouldn’t.  He sat next to me.  I cried just wanting to go home to my husband and children and sobbed in question how on earth did I end up here? 

Meal time has arrived.  I meekly took my white paper bag of milk, cookie, turkey sandwich, and pear.  I ate the pear in silence.  Wendell eagerly ate his dinner, still trying to make eye contact.  I caved and turned and he asked “you gonna eat your sandwich?”  I handed my bag to him with a smile.  He whispered to me: “you will be all right.”  Tears fell down my face.  It must have been obvious that I was a first timer.  We chatted a long time and others joined us.  I asked him why he was there and he told me that he hears voices and they tell him to kill himself.  He has swallowed bleach, overdosed on prescription drugs, has tried to hang himself, and recently the voices told him to jump off of the skyway.  I proceeded to inquire about his family and life.  He has 4 children and 3 grandchildren and a wife who all love him.  However, he still feels alone and the voices won’t quiet down.  Wendell was my protector for the rest of the evening.  He made sure that another patient stayed away from as he tried to approach me and tell me I was “hot” and if I wanted a new boyfriend.  Wendell told him to not talk or look at me again.  

Other patients began to tell their stories and why they were there.  Drug withdrawal, fight with boyfriend, cutting, alcohol and drug reaction, attempted suicides, seeing demons, and one gentleman relapsed after 6 years of being clean and sober.  They all wanted to know my story.  I was ashamed to be there.  Not because I didn’t belong.  I was one of them.  I was just like every other person there:  at some point I let  go of the truth, my faith, and hope.   I spoke of my children and Angelman Syndrome.  I spoke of seizures and meds.  I spoke of me being brought here against my will.  We had our own group therapy session going on.  We laughed, we cried, we even prayed for one another. 

As some of them shared where they go for counseling as an outpatient.  I admitted that I had worked at two of the establishments they spoke of when I was younger.  I was a mental health therapist for several years as a young graduate.  They all looked at me with eyes widened and jaws dropped.  I said, “yup we are just as crazy as the rest of the world”.  The laughter that came from the room caused the nurse to come in and check on us.  She said she wished there was so much fun on this ward every night and told me I can come back anytime.  I smiled and politely declined with a giggle.

Why am I sharing this story with you?  Because God used these people to remind me that amongst all the crazy He is there.  Amidst the sorrow, He is there.  We are never alone.  I have people who love me and would risk our friendship and force me to go to the hospital for psychiatric evaluation.  I have an AS family that love me more than I can imagine.  Some of you have never met me and yet have reached out to help us in our desperate time of need.   I have children who love me and need me.  I have many many angels on earth.  I just have to open my heart and eyes to see and feel them.

I am home now and plan to never ever let go of God’s promises and hope again.

My confession and declaration for a new year

Welcome to 2012!  It has been an interesting start in our household.  I have decided to stand up for myself.  Looking back on my 44 years, I have noticed a pattern of allowing people, including family and people I love, to hurt, disrespect, mistreat, and ignore me.  I often avoid conflict.  Which I have noticed is a mistake in itself.  I can no longer allow people to say whatever they want to- to us or about us (my family that is).

Don't get me wrong, I believe that love can conquer all.  I still believe in God's words spoken over us of His promises.  I believe in Jesus Christ.  However, I do not believe God, our heavenly father and creator intended for us to allow ourselves to  be stepped on, abused, mistreated, etc.  We are allowed righteous anger.  We are allowed to stand up for ourselves.  From now on, the first sign of abuse (emotional, physical, or spiritual)  I will confront the source.  I will NO longer stand by and allow this mistreatment to continue.

I am so thankful for God and His wisdom and His patience with me.  I know 44 years is a very long time for a somewhat intelligent woman to finally get it.  Just because I call myself a Christian..doesn't mean I  should allow people to treat me or mine like crap!

I have this nasty habit of allowing people to talk to me and my children any which way they choose.  I tend to bite my tongue and avoid conflict any chance I can.  I put my smile on my face and take the hit.  But than the hit becomes a beating.  How long can one person take this abuse?  I ask you to consider this:  Why when we see an injustice to others, as Believers, we will stand up and speak up...but when we are witness to injustice and abuse to ourselves, we say NOTHING! 
I am one of God's creations, am I not?  Don't I deserve to be loved as I have loved? 

It takes a lot for me to reach out and ask for help.  So when I do, it is a HUGE thing.  However, each time I have asked for help from a source that you would think would come to your side, answers NO..time and time again, wouldn't it make sense for me to learn to carry on without their help?  I have learned to do the best I can with what I have without expecting anything from my parents or sisters.  I love them with all of my heart.  However, having a child with special needs really puts people in two categories:  (1) those who "get it" and (2) those who DON"T!

I can continue and break it down even further to groups of people who do not get it, but admit that they don't and love you and your child anyways..and want to learn how to "get it"..they ask questions, they offer to lend a helping hand..they offer to listen when you need to vent...and then there are those who don't get it..and refuse to get it..and choose to stay in their selfish worlds and choose to stay ignorant and remain in their fear...and pass judgement...and tell you how to love, care for, or raise your child with special needs.

I have NO use for the group of people who choose to stay ignorant and to stay selfish.  I do not ask for much.  Just for some compassion and empathy.  I DO NOT want any one's pity, it does me and my children NO good!  I will take your prayers and kind and sincere words.  I have no time for fakeness or hypocrisy.

My son, Scotty was misdiagnosed with Cerebral Palsy for the first 7 years of his life.  He also has Lennox Gestaut Syndrome (a form of epilepsy that is very difficult to control).  I felt so alone for many years of caring for him.  Until 2009, he was correctly diagnosed with Angelman Syndrome.  It was difficult at first for me to reach out to the AS community.  I tend to do things on my own, or put up the front that I have everything under control.  I am here to confess, I am a MESS most of the time.  Much pain and worry and sorrow are behind this smile of mine.

I have learned to love the life I have (for the most part)..but I have also learned that I do not have to tolerate anyone who does not genuinely and sincerely love me/us.  I will continue to surround myself with those who actually give a crap about me and mine.  I love with all of me...I no longer will accept anything less from anyone else in my life.

This extended AS family has shown me that I am NOT alone.  Families do not always come from a blood line.  Families are brought together with a commonality.  Our AS family does not always agree on everything, however, we do agree on how much we love our Angels...and how much we need one another to get through the endless sleepless nights, the fears of waking up to find your Angel not breathing...I have found some lifelong brothers and sisters through AS.  I am not a big fan of AS and what it does to my Scotty, but I am a fan of who AS has brought into my life.  As I type this I cry for so many reasons.  I cry for all the Angels lost too soon.  I cry for my parents and sisters who choose not to get to know me and my Angel on a more personal level.  I will have to be content with the superficiality of our relationships and just keep smiling through the hurt, disappointment and pain.

I know now who I can trust and rely on.  That is my AS family.  I turn to many of you for encouragement and support.  You may not know it, but I look for your posts and stories to lift me up when I am not my strongest.  I watch your videos to help put that smile back on my face.

I know who loves us.  I know who cares enough to reach out.  I love Scotty's caregivers, Brittany, Angelica, and Hayley who help my load  become little lighter.

I can no longer not speak up or against anyone who is against us.  God is for us, and I will continue to listen to His guidance.  I will follow Him and not any person/man.

I have learned so much since I have allowed Jesus in my heart.  I have learned that just because someone calls themselves a Christian...does not mean they are...just because someone is a pastor, priest, or leader in a church, makes them "right" with God.

When you hear a pastor or priest say at the pulpit:  "God has given me the right to judge"  or "My church, my altar, my decision"  or "that's cute and all, but your son is nothing but a distraction"  or  "as I stand up here and speak to you, it is as if Christ himself is speaking to you"   RUN...Run as fast as you can!!  Do not allow yourself to follow any man...follow only God...He will NEVER let you down or disappoint you.

I have learned to speak up when you learn of gossip about yourself, your  children, and other church members from the pastor.  Do not just sit back and take it....speak up and move on!!!

I want to thank you for reading  my 2012 declaration!  This declaration is part confession and part resolution.

Peace and Blessings be on us all as we embark on a new year!