Natalia ~ Embracing Life ~ One Moment at a Time

Rick Santorum's Daughter Bella Has Trisomy 18 Genetic Disorder

2012-01-30T16:09:00.000-08:00

Trisomy Advocacy Group - Trisomy HELP and HOPE click here

Trisomy 18 Foundation click here

SOFT USA Support Organization for Trisomy 18, 13 and Related Disorders click here

Signing Drink -- Right on Q

2010-01-06T23:37:00.000-08:00

Today while feeding Natalia, I asked her how to say drink.. you know we are working on this talking thing with her this year... so What does she do... ?? She points to her mouth... Correct! Drink!... Where did she learn that? We haven't been doing sign language for awhile... (?maybe school?)

Praying for a MIracle... this is the year... Praise God!

2010-01-06T11:58:00.000-08:00

I believe in the Healing Power of Prayer, I believe Miracles happen everyday...we only need to be aware and Praise God for his many blessings....

OK... I'm stepping out here... I want a miracle...I don't know what else to call it. My child is now 9 1/2, she is delightful, she is happy, she is walking with help... do I need more? Why not... Now I'm praying for her to talk... I know, a tall order... Even a better understanding of YES and NO would be great...Or at least articulating it...vocally. Yesterday I told her, "Natalia this is the year, we are going to help you talk. We are going to work really hard and if you can 'slurp up your saliva with your tongue' lick icecream, and stick your tongue out to brush... you can certainly go La, La, La, La,....." and you know what she did back....???? She shook her head "NO, NO NO NO...". oh my gosh, my little sassy one.... :) So you see, she totally understands... so now the work... with some hard work, prayer and more prayer and work, I believe this is the year of another miracle... Please join us in prayer for her BRAIN, Tongue, her mouth, her vision.... I'm even going to invest in that new program, my baby can read... I'm going to pull out everything and see what this year brings... if I could also get your daily prayer for a miracle I know God will hear and answer. Thank you so very much for joining us in prayer. Hugs, ThereseAnn

*Picture - Natalia enjoying her time next to Grandma

Natalia Skiing with www.usarc.org at OneTrueMedia.com

2010-01-03T11:19:00.001-08:00

There are so many wonderful programs for those with special needs, and the most amazing folks who offer their time to help our children experience life.
Natalia had a blast, she was all smiles....

Make video montages at www.OneTrueMedia.com

Natalia's Grandfather is now an Author - Life's Vignettes

2009-11-29T08:12:00.000-08:00

Life's Vignettes: A collection of Short Stories Covering One Man's Life by Roger Miller
(Paperback - Nov 13, 2009) Purchase off AMAZON
*****This book is highlighly recommended!

Natalia's Grandfather is now an Author
Stories from Childhood through his Seventies. Married 55 years, 6 Children, 21 Grandchildren & 7 Great Grandchildren.

Stories from his childhood in the 30's, adolescence in the 40's, young adulthood in the 50's including Military Service in Korea. Raising children in the 60's & 70's along with many of LIFE's unexpected surprises.

1 of 1 people found the following review helpful:

A heartwarming walk through one man's life., November 29, 2009

By	Margaret Royston "Marque" (Chino Hills, CA) - See all my reviews

This is a heartwarming book full of short stories that will make you laugh and cry. From his earliest childhood memories, time served in the Korean War, and being the father of six children, Roger Miller retells the funny parenting moments that come with raising a large family. An easy read.

Clifford comes to School

2009-10-16T08:06:00.000-07:00

I am slowly beginning this blog to let you see what life is like living with Natalia, as you can see from this pic, here is her heart
warming smile.

She is doing great. Walking more... will try to post a video soon.

Introducing Natalia

2009-06-20T10:52:00.000-07:00

Where do I begin?...My life was forever changed when we received this wonderful gift of love...

OUR NATALIA... while all my children are amazing, this little one has helped me to live what I do believe is my life mission. Helping others to Embrace these lives...for as little or as long as we are blessed to have them on this earth.

I share this photo of Natalia with her cleft lip as I loved how she arrived. So pure, so unexpected, so broken, so unique, so worthy of loving and living. She is a gift to my life, our marriage, our family.

I hope you'll enjoy hearing from time to time about our Trisomy 13 - Patau syndrome journey.

4 months - Dec. 2000

Natalia 5years old - Full Trisomy 13 - Patau Syndrome - Kindergarden at Blind Children's Learning Center, Tustin, California http://blindkids.org (*I highly recommend this Early Intervention Program for the Visually Impaired)

*At birth we were told of the Causes of Trisomy 13. We were told the risk factors, prognosis, and life expectancy. We chose treatment, looking at each individual medical symptom. Choosing to treat the symptoms not the syndrome.

One day at a time, we have Triumphed over Trisomy 13!

To view more than 300 families who share their pictures go to http://www.trisomy13archive.com

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org