Echo

There are certain times that words echo in our minds.  The words of the doctors saying “take her home and hope she smiles”  or the time another said, “with work, her vision can improve” or even the words of one particular therapist at Easter Seals.  Her words will echo in my head and in my heart forever.  I will explain this moment when time stood still.  

When I was pregnant with my second child, Olivia was only about 18 months old.  Remembering the nightmare of events that occurred with Olivia, we were very nervous about the pregnancy and delivery.  All went smoothly and on September 29th 2009 Amelia, Olivia’s sister, was born without complications.  After Amelia was born, I heard numerous times that “Amelia will be good for Olivia.”  I agreed that this child would be able to help Olivia during development or struggles that may arise in the future.  Maybe even helping her in ways that I didn’t realize at the time.  

But what I didn’t realize was that there was another perspective, another way to look at this scenario.  Bridgette, Olivia’s occupational therapist, would say something to me that literally stopped my world.  In conversation with Bridgette, I repeated what was said to me so many times…”She [Amelia] will be good for Olivia”.  And Bridgette looked at me without hesitation and said with passion, “and Olivia will be good for her”.  **Insert: frozen moment in time**  Wow!  I repeated that phase in my head…Olivia will be good for Amelia….Why have I never looked at it that way?  YES!  Olivia WILL be good for Amelia!!!  

Bridgette’s follow-up statements explained that her brother has Down Syndrome and he was partially responsible for shaping her into the person she is today.  In a way, he had even influenced the profession she decided to pursue.  She said that she didn’t know it at the time, but that every game they played as kids were actually a form of therapy for her brother.  She elaborated on her story and I began to understand.

This is so evident to me now.  Everyday we watch interactions between these two loving sisters.  We see Amelia being an untrained physical, occupational, speech, and vision therapist.  We witness caring and compassion that can not be taught.  I not only see the love they share for each other, but I feel it as well.  Now don’t get me wrong…they can fight, scream, yell, and cry just like other siblings, and that is okay too because that is normal, and we rejoice in anything that is ‘normal’.

And last week, when we were at Wheeling Hospital where Olivia had and EKG and ECHO.  Amelia (or Mimi as Olivia calls her) sat and held her hand when Olivia’s anxiety increased and she became upset about the technician attaching the monitor leads.  Amelia grabbed her hand and said, “It’s okay Olivia, it won’t hurt.”  And during the Echocardiogram when Olivia was finally calm enough to let them place the ultrasound transducer on her chest.  Amelia whispers in my ear…”Mommy, Olivia is doing so good, isn’t she?”  

I will never forget hearing that statement from Bridgette that day 4 years ago.  Those words had emotionally impacted me in such a way that I now appreciate what each of my girls bring to each other.  Every time I repeat this story to someone, I just can’t get through it without my eyes welling up with tears.  Those words truly echo within me.  

Pictured: Echocardiogram picture of our sweet Olivia’s heart.  

This story and names are used with permission:

“I can't even begin to tell you how honored I am to be a part of a memory as strong and positive as this one. You have really touched my heart and I cried tears of joy and celebration that my brother's life and legacy were able to shine through me and be passed on to such a wonderful family. Yes, please share this story. Maybe it will be an "aha" moment for another family.”  -Bridgette

Small town...big hearts

I wanted to take a minute (and a blog post) to reflect on our adventure with the Backpacking LightAide Program that was sponsored by Phillips, Wonder baby and Perkins.  Looking back on this I couldn’t have been more surprised by the entire experience.  

I originally entered Olivia because I thought that it would be wonderful to be a part of something from the beginning.  I felt the LightAide was a sort-of pioneering in technology for children with Cortical Visual Impairment.  My next thought was that this could give Olivia the opportunity to trial a new product to see if it was a good fit.  If it was…great, and if it wasn’t…then it’s better to know now than to invest in a piece of equipment that she might never use. 

Reading and researching about the LightAide, my intuition led me to think that this might just be what Olivia needed to motivate and engage her in her learning.  Could the LightAide be something that is more than just colorful lights?  Would this device encourage participation when the pre-programmed activities were utilized?  I had a good feeling about it.

Once we received word that Olivia was chosen, I was excited to not only introduce the LightAide to Olivia but also to her team.  I hope that my passion for finding the best way for Olivia to learn is transferred to the professionals that work with her daily.   What happened next was a complete surprise to us all.  Not only did we introduce Lily LightAide to Olivia and her team, but in reality we introduced it to the world.  

Literally, the news of the LightAide and the stories of the 6 children with Cortical Visual Impairment spread like wild-fire… 46 countries participated in the voting process!  I posted and shared our story and it was shared with others, hundreds of times over and to thousands of people.  More and more people grew to know Olivia and learn about her diagnosis.  

Through all of your efforts, the awareness for Cortical Visual Impairment grew.  Many people that have known me for years, stated that they never knew that I had to deal with all of these things.  I don’t look at it as “dealing” with Olivia and her disability; I look at it as having the opportunity to find new ways, break new ground, and push the limits to what the doctors once said that she might never be able to do.  

How people responded to our story is something I will never forget.  There are so many people, most I don’t know and will never know, that pushed for our sweet Olivia.  I will attempt to acknowledge some of these individuals below, but I hate that I can’t list everyone by name.  With 14 thousand votes, that would be impossible.  So for those of you that are reading this and voted for any of the children, I want to thank you from the bottom of my heart.

I was truly enLIGHTened and humbled by the support from our small town with very big hearts.

THANK YOU:

I would like to thank Bill Beattie, Superintendent Edison Local School District and Jamie Evans, teacher and coach at Edison High School.  It only took one email to let them know that Olivia was chosen for the Backpacking Program and Edison was on board with promoting her story.  Thank you #EdisonNation for using social media to make a positive difference in the life of my daughter…and others!  Not only did Edison vote, they didn’t stop there.  The students believed that ALL of the children deserved this new technology so they brought life to the idea of “Help Everyone SEE Our Spirit Week”, coordinated by Mr. Evans .  Through this student driven fundraising campaign, they raised a total of $ 3,209.47.  Donations poured in, not only from students, but individuals and businesses from the local community.  

In turn, every family will be able to receive a LightAide, all of the switches used to operate the LightAide, and the carrying case.  Another donation was made to purchase a LightAide and all the amenities to Easter Seals in Wheeling, WV for use with any child with Visual impairment.  And lastly, there was enough money left over to make a sizable donation to Abigail’s Angels.  Abigail, another Edison Local student, suffers from a genetic visual impairment called LCA.  She happens to be Olivia’s cousin.  Please visit her site: http://www.abigails-angels.com.  All funds raised are donated to the RDH12 fund for sight [a registered 501 (c) (3) charitable foundation founded by families of children with LCA caused by the RDH12 gene].

Not only did Olivia win a LightAide, but there was a very special person who contacted Olivia’s Aunt and wanted to donate a LightAide to Olivia.  Her request was that even though Olivia had won, she wanted her to have one that she would keep at school and didn’t have to transport back and forth.  By keeping it at school, it would also be beneficial for the other children in the Visually Impaired Program.  We want to thank Penny Mills for this extremely generous donation.  For someone that we have never met, your kind heart led you to want to reach out and make a difference and help our sweet girl.   You are very special!

The last person I would like to mention is one of America’s heroes.  Olivia received a very special gift from a thoughtful soldier.  Olivia received a necklace with a unique blue heart-shaped stone attached.  The note that came along with it said, “To: Olivia Ault, A gift to remind you to never stop smiling.  A small piece of Lapis to carry to your dreams.”  From: SGT James Goad  (Lapis: a deep blue semi-precious stone mined in northeast Afghanistan).  He mentioned that he hoped that Lily visits Miss Olivia again.  I am sure she will treasure this gift!

The good in people never ceases to amaze me.

Team Olivia:

Sister: Amelia (Mimi) Ault

Grandparents: Ge & Papa Lipinski, Grammy & Pappy Ault

Family:  Aunt Lori & Uncle Keith Kinney, Aunt Jodi & Uncle Jon Eick, Uncle Rich Ault

Cousins: Jon, David, Makara, Andrew & Abigail

Friends & Family: ALL of them!

Jefferson County Educational Service Center: Visually Impaired Program
Jeff Oblak:  JCESC Director of Special Education

Nikki Richardson: Teacher of the Visually Impaired

Miss Debbie Cosgrove and Miss Michelle Trikones:  Paraprofessionals VI unit

Edison Local School District Superintendent: Bill Beattie

Edison #TeamOlivia special supporter: Jamie Evans

Edison Local: teachers, staff, students, friends and community

Edison FFA

Indian Creek Local School District Superintendent: John Rocchi

Hills Elementary Principal: Mrs. Fritz

Hills Elementary School: teachers, staff, students, friends and community

Miss Mary: Occupational Therapist (Easter Seals)

Miss Kelly: Speech Therapist (Easter Seals)

Trinity Health System employees/co-workers and CEO Fred Brower

Wheeling-Nisshin Inc. employees/co-workers

Church families: Starkdale Presbyterian Church & Unionport Christian Church
All of our wonderful Facebook friends

All #TeamOlivia Tweeters:  esp. Hilary Kinney & Marshall County FRN & Wendy 

Social media force & networkers: Brett Youmans, Ryan Dunfee

Chris and Melissa Higbee: Support from the Higbillies 

Ault family Photos: Amanda Petrucci Photography

Other Donations from:

Matt and Dana Gallagher & family- Wallables letters

Everything Happy CMO Jon Repella- Happie Blankies

SGT James goad:  Lapis necklace

Penny Mills: LightAide donation, 3 switches and carrying case

Links below:

Amber Bobnar: Wonder baby & Perkins

Dr. Catherine Rose: Philips

Herald-Star & Wheeling Intelligencer:  Janice Kiaski

WTRF 7 news:  Sara Yingling

WTOV 9 news:  John Rudder & Celina Pompeani

Amber Bobnar & Wonder baby

* Backpacking LightAide Program:  Link

* Voting results page:  Link

* Voting map:  Link

* LightAide:  Link

Philips, Perkins & Dr. Catherine Rose

LightAide.com

Dr. Catherine Rose blog

Herald-Star/Wheeling Intelligencer & Janice R. Kiaski

* Reunite Lily & Olivia

* Girl wins contest for device

* Edison's effort helps Olivia & others

WTRF-7 & Sara Yingling

* Help Change One Ohio Valley Child’s Life:  WTRF7 link #1

* Local Girl With Visual Impairment Wins National Contest:  WTRF7 link #2

* Local Girl Who Won National Contest Now Raising Money for Those Who Didn't Win:  WTRF7 link #3

WTOV-9 Jon Rudder & Celina Pompeani 

*Help make a child's wish come true - WTOV9 link #1

LightAides for everyone -  fundraising link

-- Blog: Hope she smiles

-- Twitter: Olivia's mom

-- You tube: Olivia & Lily LightAide videos

Thank you again from Olivia’s mommy and daddy.  We are truly blessed by all of your support.  

…our adventure continues