Wednesday, February 12, 2014

Help us spread the word: INTERNATIONAL ANGELMAN DAY IS FEB. 15 #cureangelman

Hello Everyone!  Feb. 15 is International Angelman Day.  I am sure most of you know that my son, Scotty has Angelman Syndrome.  Part of chromosome 15 he received from me is deleted.  My son cannot speak.  Scotty has seizures.  He has severe reflux, chronic constipation, asthma, scoliosis, suffers from headaches, back pain, hip pain, he has chronic upper respiratory infections, his airway often closes when he gets a cold, his walking is off balance and  he often falls, he has jerky movements, has difficulty feeding himself, and yet he smiles.
Angelman Syndrome is a devastating disorder.  Look past the beautiful face and the obvious love in his eyes and you just might see the struggle.    
There is nobody in this world that can take the hope away from me.  The hope for a cure.  The hope that my son will talk and be seizure free one day.  Please share this blog post and spread awareness for Angelman Syndrome.  Help us find and fund a cure.  Go to cureangelman.org and donate 15.00.  Do it for Scotty and all other people struggling with AS.
Learn more about this disorder go to cureangelman.org.
 I will be celebrating each day my son’s life, his determination, his great beautiful spirit of joy and love, and I will celebrate the hope and faith that there will be a cure in his lifetime.

Click the link below and see a beautiful message from fellow Angel Parent Colin Farrell.




here is a link to a video about my scotty...enjoy

Thursday, December 12, 2013

You Never Know Whose Hand Will Pull You Into Heaven

Sitting in the lobby at the Chicago Hyatt Regency trying to get some work done before we hit the road back to Buffalo, Scotty is sitting next to me saying hello to each person he can.  There is an older gentleman inches from Scotty’s chair.  Scotty is trying to get his attention and says “HI” and grabs for his arm.  I say:”Remember no touching just waving”.  

This man took Scotty’s hand and held it so gently and says. 
“It is OK, he is fine”.  We continue an incredible conversation about so many things that have been weighing on my heart and mind for so many years.

 This man was with his wife and another couple.  The one woman was a teacher for 35 years, now retired.  This gentleman and his wife spoke of their 3 sons, one happens to be named Scotty.  But their Scotty is 48 years old.  Their youngest son is 38 and has learning disabilities.  Their youngest son lives with their Scotty and works for him in their restaurant.  The fear of who is taking care of my Scotty when I am gone flooded me and a new hope had arisen because of this brief encounter with these people.

We spoke of a mother’s and daddy’s heart and how it is broken often and easily by a cruel educational system and world.  Smiles were shared through our tears.

Throughout this entire time, Scotty and this gentleman were having their own nonverbal conversation.  Holding hands, Scotty was caressing this man’s bald head..and pulled this man closer to his face..forehead to forehead..as Scotty has done to me so many times.  There was a moment of complete silence.  All of us just watching.

This man not once pulled away from scotty’s hand.  These were his words to me:  YOU NEVER KNOW WHOSE HAND IS GOING TO PULL YOU INTO HEAVEN”.  Your son’s hand is reminding me of that.  Too many people walk right on by this beautiful blessing.  This Scotty is going to pull many people into Heaven.”


I could not hold back the tears.  Our time together ended, and this man stood up and gave me the most loving hug a father would give a daughter.  I am forever
 changed because of this brief moment.

Tuesday, November 26, 2013

Here's to a Better Tomorrow!

Some people recently have told me that they admire me or I inspire them.  I am not quite sure why.

Some people ask me how I do what I do each day. 

I am not sure how to respond sometimes.  I am a mom, no different than any other mom.  I live for my sons.  I try to give them unconditional love each day.  I do my best to encourage and lift them up when they are down and I cheer them on when they are up.

No secret that my youngest son has Angelman Syndrome and Epilepsy and his needs are a bit more unique then my other sons’.  However, I am not special in any way.  I am an ordinary woman who faces each day with hope that the next day will be better.

I am not sure what I am made of…some say I am made of steel..for what I have endured and continue to endure.  I am not made of steel..for when I do fall…I break…steel does not break.
I break a little each time I see Scotty have a seizure and when he struggles to say a word.   I break a little when Ryan is discouraged in life. I broke when Christopher broke his back and can’t move because his body aches all over.

I break each day I am ignored or rejected by those I love.  I am a broken woman. 


What holds me together is hope and faith that I am working towards a better life for my sons and me.  I am held together with pure relentlessness.  I will NEVER GIVE UP.  Most of all I am held together with love.  The love  I have for my sons: Ryan, Christopher, and Scotty and the love they have for me in return. 

Saturday, November 23, 2013

Shop my AVON store!

Shop my AVON store!: Here's a sneak peak at some of the latest products available at Avon. Be sure to click

Tuesday, October 8, 2013

Our Children are ABLE!

I am compelled to write and say this after an interesting string of comments in one of the Angelman groups on facebook:

  It is important to not shut down any possibility for our children.  We must not say they can’t or will never.  We must think and say, let’s try this, let’s see what he CAN do.  Honestly, I have many days and nights of silent tears and disgusting loud sobs being Scotty’s mom and wishing a better life for him and the worries of when I am not here.  However, I have never fully accepted what ‘experts’ have said regarding angelman syndrome and my son’s possible and actual abilities.  Why do we automatically label a nonverbal child as MR?  Or unable to communicate?  I have fought many years for a speech therapist to hear me and believe me that Scotty is capable of learning a universal mode of communication. Finally, a speech therapist saw what I already knew about my son.  Her words to me were:  “There is such a light in Scotty, and I am going to do everything in my power to make sure it shines”.    
 My son has communicated since birth. Unfortunately I was the only one who understood each sound, whimper, grimace, and cry.  Each sound and intonation meant and means something to Scotty.  But I knew there will be a time that Scotty is out in the world and will need to communicate his wants and needs without momma interpreting.
Each and every child is capable of learning; this includes COMMUNICATION.  There are many forms of universal modes of communication.  We have tried many of them.  It takes trial and error to see what will click with your child.  But you must know this:  your child is watching, listening, and taking it all in and one day he/she will do the sign for “more” after 15 months of modeling, hand over hand..or he will imitate the sounds he hears every day.  I am tired of hearing or Del + he can’t do this. Or other mutation forms of angelman syndrome are higher functioning.  REALLY?  My son walks independently, feeds himself (messy but he does it), he understands basic sign language and can do the signs as well..(he may choose not to show you that he can..he is what we call self directed)..he says Momma, C’mon Mom, Ellie, I love you,  My momma, I love my momma, Bubba,..i have heard him say Dada , nonna, papa, and even Oh Shit.  I am not making this up, I am not exaggerating. He is MORE ABLE THAN NOT ABLE.
He does these things  Not because I willed them to happen but because EACH CHILD IS CAPABLE OF LEARNING AND COMMUNICATING.  Expectations grounded in reality have been our secret.  I am a mom based in reality with much faith and belief in my son.  I don’t look at IQ ..I look at all the other forms of INTELLIGENCE THAT he shows me and the world every day:  He has an incredible sense of humor, CREATIVITY, HIS ABILITY TO PROBLEM SOLVE, his ability to “read” another person’s emotion. He is quite intuitive, his artistic ability, his musicality, his insightfulness of a person’s spirit..He knows when a person looks at him and thinks of him as “less than”.
As each person is different so are individuals with AS.  You will find a broad level of capabilities amongst our children.  I am just saying to please do not give up before you even tried with your child.
My son has Angelman Syndrome Del +.  He was diagnosed in 2009 at 7 years old.  He was originally diagnosed with Cerebral Palsy.  In retrospect, I am happy we got a late diagnosis.  I did know of the “never will do” or “he cannot and will not do that”   My mind set was one day he will walk, one day he will feed himself, one day he will “talk: (not in the sense of you and I talk..but in the sense of a form of universal communication).
 I find it sad any parent would not be open to hear what their child is capable of so much more than what the ‘experts’ say.  It breaks my heart for any child that the bar has been set so low.  It's disappointing that any parent would not listen to what other parents that have walked this journey before will tell you with NO doubts that there child has surpassed any low expectation put upon them. 
“The traditional definition of intelligence is too narrow, and thus a broader definition more accurately reflects the differing ways in which humans think and learn.  Traditional interpretation of intelligence collapses under the weight of its own logic and definition, noting that intelligence is usually defined as the cognitive or mental capacity of an individual, which by logical necessity would include all forms of mental qualities, not just the ones most transparent to I.Q. tests”

List of types/forms of INTELLIGENCE:
·         Musical - rhythmic & harmonic
·         Visual - spatial
·         Verbal - linguistic
·         Logical - mathematical
·         Bodily - kinesthetic
·         Interpersonal
·         Intrapersonal
·         Naturalistic
·         Existential
·         Critical reception
·         Creative/Artistic
IQ tests only measure linguistic and logical-mathematical abilities.

My advice to all newly diagnosed parents of a child with AS or any developmental disability:  DO NOT SELL YOUR CHILD SHORT; LOOK BEYOND THE CANNOTS OR WILL NEVERS…SEE THE MAYBES.WHAT IFS..LET’S TRY THIS, and WHY NOTS.

I will never sell my son short and I sure as hell will not let anyone else take the  “possible” away from him.

Tuesday, September 24, 2013

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Monday, August 19, 2013

WHAT'S LOVE GOT TO DO WITH IT?



EVERYTHING!  Love is not a word to say it is an action to live and a state of being.  So many people have said to me: “Don’t you know I love you?”  Just the need to ask that must indicate that person was not living or showing it.

I am certain that in your lifetime you have different people teach you about love.  Some people may have taught you that you have to earn their love.  Others may have shown their love more freely.  Family is the first environment that we learn what love is and isn’t. 

At an early age I was aware of this state of ease around some people.  I was relaxed, free to make mistakes, free to laugh out loud, free to not have to be perfect.  I never had to earn my love from my grandmother by being a perfect student or being the prettiest granddaughter.  Mima was the first person to show me what love is supposed to look like. Perhaps, that is why I spent almost every waking moment with her. 

Decades of allowing people to show me what love isn’t; I have come to a place in life where I realize that I am the problem.  At what point did I believe the lies that I am less then?  When did I become less than deserving of kindness, respect, compassion, understanding, mercy, and grace? How come I have settled for disrespect, abuse, mistreatment, and neglect? 

Words that have been spoken over us aren’t what binds or frees us; it is our belief in those words. 










WARNING:  Be prepared to walk alone for a while when you finally make a stand for and take notice of yourself and the people that surround you.  It is a long process of letting go of those who drain every ounce of joy in your soul and one day finding and letting those people in who deserve your heart, your kindness, and your love.

Besides, my Mima, I have had only a handful of individuals  who have displayed the true action of LOVE:  my sons, Ryan, Christopher, and Scotty; my future daughter-in-law Brittany, and of course my dog Ellie :)  They taught me that they will always love me even when I fall, fail, and make mistakes.  I am loved despite my shortcomings.  I feel safe in their presence to be myself, to laugh out loud, and to be silly.  Perfection NOT required.