Daddy's Eyes

Here is a poem I wrote as if Scotty would be saying/feeling these things.  He is my inspiration to see through this entire world through God's Eyes.

Here is a poem I wrote.  Well, my mommy wrote it as if I did.  She knows me pretty well.  She prays a lot to God and sometimes she calls him “Daddy”.  She says He is our Heavenly Father and the love He has for us is so huge He likes to be called Daddy sometimes.

Through My Daddy’s Eyes

If you saw me through my Daddy’s eyes:

                You wouldn’t stare or look past me as if I wasn’t there

                You would look at me and say “hello”

If you saw me through my Daddy’s eyes:

                You wouldn’t ignore my smile.

                You would allow yourself to be blessed by it.

If you saw me through my Daddy’s eyes:

                You wouldn’t see a retarded person.

                You’d see a person who knows the secrets of the heavenlies beyond your imaginations.

If you saw me through my Daddy’s eyes:

                You would know what I found so funny

                You’d laugh with me rather than shushing me

If you saw me through my Daddy’s eyes:

                You wouldn’t fear or hate me or others like me.

                You’d experience all the love I have to give.

If you saw me through my Daddy’s eyes:

                You’d share in the Joy of the Lord with me rather than suffer in  depression.

If you saw me through my Daddy’s eyes:

                You would get to know my name rather than walk past me.

If you saw me through my Daddy’s eyes:

                You wouldn’t feel sorry for me.

                You’d rejoice in the Lord with me.

If you saw me through my Daddy’s eyes:

                You would know that I do not care if you hate or fear me… I love you anyway.

If you saw me through my Daddy’s eyes:

                You’d want to know my secret to happiness.

You see:  I see you through my Daddy’s eyes.

No words left

Writing has always been a way for me to process emotions regarding events that take place in the world and in my life.  Words have been my way to share what is in my heart.

This week I have very little words only tears.

Tears of disappointment.

Tears of deep sorrow.

Tears of anger.

Tears of grief.

Tears for a beloved fellow Angelmom who is waiting to take her last breath.

Tears for a beautiful young man named Evan who has lost his life to all that Angelman Syndrome can do to a body.

Tears for lost love.

This life is not easy.  We all have a story to tell.  Stories of heaven and hell.

This week I have had to say good bye to the dreams of a miracle for Patty Oneppo to be cancer free and good bye to another child with Angelman Syndrome.

Tears of joy are much sweeter than tears of grief.  

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.

http://www.youtube.com/watch?v=HOpT9-c9BI4

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

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