Pappy's Angel

PAPPY:

"God saw you getting tired 

and a cure was not to be.  

So he put his arms around you 

and whispered, "Come to me."  

A golden heart stopped beating hard

working hands at rest.  

God broke our hearts to prove to us,

He only takes the best." 

-Unknown

Harry "Pappy" Ault, my father-in-law, passed away after surrendering to a long battle with chronic illness.  He always referred to Olivia as,  "Pappy's angel".  He was so proud of her and all of her accomplishments.  There wasn't a time when he saw her or talked about her without a smile appearing on his face.   I take comfort in knowing that Harry is not gone from our lives and that we will carry him with us in our hearts.  And if I know Harry, he will have all the angels in heaven watching over our sweet Olivia in no time at all.   

We are never prepared for the inevitable.   I suppose it's because in those final days, the memories of our life together flood our mind.   We reminisce of days gone by and the laughs that we shared, all the while hoping that one day we will all meet again at heavens pearly gates.  During his last days in the hospital, we watched him practice his cast just like the days of summers past.  I suppose he was dreaming of the times he sat on his boat casting for hours.   I hope the practice has paid off and you are already reeling in big ones.   

Sometimes I'm not sure what Olivia perceives and how she interprets everything.   I do know that last night I watched her clasp her tiny hands together, bow her head, and I heard her say, "Dear God, I pray for Pappy.  I love God, I love Jesus, I love Pappy, Amen"   I'd say that's pretty awesome company to keep.  

I don't know how Olivia will handle the events of the next couple of days, but if I know her Pappy, he will be there beside her to guide her through.  Now I believe the tides have turned.  In my heart I know that Olivia is not only Pappy's Angel...but Pappy has now become Olivia's Angel.  

Until we meet again...
Love, your favorite Daughter-In-Law.

A special fairy tale

January gives us the chance to reflect upon the past year and make plans for the new year ahead.  I am thankful for the opportunities that have graciously been given to us. Through self-reflection in this blog, I have also been blessed to open up and share some thoughts and concerns.  I have enjoyed the cathartic nature behind sharing our experiences of CVI with others.  Better yet, sharing the journey of our daughter that just happens to have special needs and cortical visual impairment.

This adventure that we travel with our sweet Olivia takes us in so many directions.  In September, as most of you know, we traveled to Chicago to be included in the Changing the Face of Beauty campaign.  The "casting call" requested a written submission including 'what makes your daughter special?'.  If you know Olivia, you already know what makes her so special and a joy to be near.  If you don't know her, I hope by reading these posts you can feel how truly special she is.   I received confirmation that she was one of 17 girls with an assortment of abilities chosen to be showcased in this photo shoot.

**CASTING CALL! Mighty Acorn Foundation wants to spread the news that children of all abilities and backgrounds are beautiful! We are working together on a project that will "Change the Face of Beauty" and take place here in Palos Park, IL on Sept 15th and 16th 2014. This project will show the world that all children are beautiful no matter where they come from or what their ability is! We are looking for those 15 beautiful girls ages 3-9 years old to model gorgeous designs.**

The first day of shooting was an experience in itself.  We watched as photographers, designers, and volunteers were all busy completing their task of capturing beautiful children in a "Barn Fairy Party" themed shoot.

Kelle Hampton, author of 'Bloom' and 'Enjoying the small things' blogger, joined the event to help celebrate inclusion in advertising.  We met Mitzi and Brittany from Livie & Luca as well as other owners, designers and supporters of this great cause.

Taking in all the hustle-and-bustle it was amazing to witness how creative minds come together on such a project.  All of the preparation that goes on behind the scenes is never credited enough.  I met a couple moms and enjoyed briefly exchanging words of hope and excitement about this project we were traveling on together.

"What that means for my children is that the media-saturated world, by which they can’t help but be subconsciously influenced, broadens the definition of beautiful and perfect and acceptable so that they don’t judge themselves or anyone around them" - Kelle Hampton

"It’s not just about being seen. More important, it’s about changing the standard of beauty"                                                               - Kelle Hampton

The second day consisted of the children being photographed individually and with one other child by the photographer, Katie Driscoll (5 boys + 1 girl = 6 Photography by Katie Driscoll).  The barn was amazing and the set was designed by Modie Lavin.  You could literally feel Katie's passion for this project and her goal of having the media represent all the different kinds of beautiful children.  Her passion stems from her daughter Grace that has Down Syndrome.  I feel connected to Katie because like her, my special daughter is also my driving force for pushing the limits in all areas of her life.   Olivia inspires me to create a path of success for her future.

Olivia lit up in front of the camera, especially around the other 16 children.  She showed off her genuine side and flashed that perfect smile.  It was a delight to see her shine those two days in Chicago.  I am so proud of her.

This also gave us an opportunity to tour this great city as a family.  None of us had ever been to Chicago so we relished in the evening and toured attractions such as the "Bean" and the Magnificent Mile.  This big city, unlike our small farm town Ohio,  held the promise of wealth and success.  We even gave Chicago-style pizza a try, but it didn't compare to our hometown favorite, Giannamore's Pizza.

To our surprise, Olivia along with 3 other girls and photographer Katie Driscoll, graced the November 2014 cover of Chicago Parent Magazine.  The article spotlighted the movement and the efforts behind the push to change perceptions.

Driscoll states: “With them being the largest minority in the world, they’re the least represented.  ...Anything is possible if you work hard enough and creatively enough."
"We’ve gotta go to the next level and for me, our imagery, our media, is the biggest way. We see there what we believe is important and make conscious decisions about what we eat, wear and do from those images,” Driscoll says. “The more children with disabilities are included, the more our children are exposed.”

Link to full article: Chicago area mom changing the face of beauty

"Change" can occur very slowly at times and at other times it gains momentum and in the blink of an eye change happens.  This movement is currently gaining more steam and publicity.   In a future blog post, I will hightlight the next leg of this movement, #15in2015, #ImReady, #Changingthefaceofbeauty, #theEllenShow.  Using social media as the driving force to push this movement for 15 retailers in 2015 to get on board and commit to use children with disabilities in their advertising.  We are ready!

At the conclusion of the project, there was an online auction of all of the clothes, shoes, and accessories that were showcased from our photo shoot.  Proceeds from the auction went to support GiGi's Playhouse as well as help to build a kitchen for the Mighty Acorn Foundation's orphanage in Kenya.  I felt as though we were a part of something so much bigger.  Knowing that we were involved with something that had an impact to improve the lives of so many is a heartwarming experience.  I didn't want that to be the last of it.  I want the world to see Olivia.  I want everyone to realize that no matter what our individual abilities are, we can all strive for greatness.  Greatness in my book means that we use our talents to improve the lives of others.

Not long after the auction ended we received our look book in the mail featuring all the children including our sweet Olivia.  The companies who participated in this shoot will be provided these look books featuring inclusion in advertising to help spread the word to their consumers.

Then just today, this picture comes across my newsfeed.
"So remember back to this past September when ‪#‎changingthefaceofbeauty‬ partnered with Mighty Acorn Foundation and put on the most spectacular shoot in the history of shoots? Clink Link: Changing the face of beauty/Mighty Acorn Foundation  Well the items were auctioned and today Mighty Acorn awarded GiGi's Playhouse Tinley Park with a big ol giant check! WOW did that feel good to be a part of something that just keeps on giving! " --Katie Driscoll

It was truly a magical two days celebrating children and their uniqueness.

Thank you:
Livie & Luca

Mustard Pie Clothing
Matilda Jane Clothing
Birthday Express
KPea Original
Persnickety Clothing Company
Lemon Loves Lime
Jak & Peppar
North American Bear Co.
Oilily USA

"This project left 17 girls feeling strong, beautiful and important and 9 companies left questioning their future advertising campaigns.  That is pretty amazing." - Katie Driscoll

 Thank you to the 

Mighty Acorn Foundation 

and 

Changing the Face of Beauty 

for coming together to ignite dreams and empower the future of little girls.
Especially one sweet girl
that is very close to 
my heart. 

Link:  Project photos
Video: Changing the Face of Beauty Video

...our magical adventure continues
Olivia's mom

You will be OK!

"Kindness is the language which the deaf can hear and the blind can see."
--Mark Twain

A gentleman contacted Hills Elementary after he watched Olivia's story featured on the news. He wanted to donate towards the fundraising efforts. The kindness and generosity of others never ceases to amaze me. Along with the donation, he also sent this note.

 

"But you will be OK!" I already know that I will replay your quote in my head in the future. It will give me peace. Thank you Jeff!

Newspaper story on PCVI Society Fundraiser at Hills Elementary

Family brings attention to condition

November 8, 2014

Herald-Star

MINGO JUNCTION - When Olivia Ault was born, doctors grimly told her parents to take her home and "hope she smiles."

Olivia, the daughter of Anna and Tom Ault of East Springfield, suffered a brain injury that caused a stroke in utero and seizures after birth, leading to a diagnosis of cortical visual impairment. Now age 7, she appears to be a typical girl but still faces setbacks from her condition.

"Olivia had a stroke before she was born and it caused brain injury, developmental delays and visual impairment.  A lot of people do not know she's visually impaired until they get to know her," Anna said.

Her family is hoping to bring attention to children with her condition by supporting the start of a Pediatric Cortical Visual Impairment Society. Anna said the fundraiser began this past summer and plans are to contribute funds to the PCVIS and possibly present a check to the group during its annual convention in Omaha, Neb. She keeps in close contact with PCVIS President Richard Legge, who suggested the check presentation during the convention in June. The PCVIS is comprised of doctors and other medical professionals in the realm of cortical visual impairment, and Anna said surprisingly no such organization ever was in existence. With the formation of the new group, she hopes it will shed light on a condition that affects thousands of children.

"It is to help with research and support kids with CVI, among other things. They have to have $12,000 to start this organization and CVI doesn't have a society. Everyone on board has worked with kids in some way and CVI is the largest cause of visual impairment in children in western countries. It's a surprise that there's nothing out there like this," she said. "I thought, 'How could we help?' It's not only for Olivia, but it will help other kids with CVI as well."

Although Olivia lives in the Edison Local School District, she attends first grade at Hills Elementary School in Mingo Junction since it houses a visually impaired unit. School officials there have been assisting with her family's efforts and most recently collected $450 from a benefit dance and lemonade sale. Other Hills pupils donated $1 to attend, and organizers presented the family with a check at the conclusion.

Principal Cecilia Fritz said the school was happy to help Olivia and her family as they worked toward their goal.

"This is to help support Olivia. One year we voted for her to get a computer program and this is the first year for the dance," Fritz said "Last year, we held a dance for the United Way and it was a nice moneymaker. The kids dress up and it's like a social event for them."

Anna said teacher and family friend Melissa Brown contacted her with the idea.

"The whole community's response to Olivia and her needs is really amazing to me," Brown said, "This is what we want to do. We want to help out. It's amazing."

Total contributions so far have exceeded $1,300 and include profits from a GoFundMe webpage, a Thirty-One sales fundraiser and a lemonade and hot apple cider stand at the Unionport Apple Stirrin' Festival last month. Anna continued that online voting previously enabled Olivia and other kids like her to receive Lily LightAide device through Wonderbaby.org that utilizes LED lights, colors and movement for stimulation and learning. Wonderbaby.org is a project funded by Perkins School for the Blind in Watertown, Mass., the first school for the blind in the U.S. and where Helen Keller once was educated.

Because of her condition, Olivia also has issues with speech and cognition, making it difficult for her to communicate what she sees. She makes regular visits to doctors in West Penn Hospital in Pittsburgh and Children's Hospital in Cincinnati, plus she has therapy in North Lima. She can also count on her 5-year-old sister Amelia as a helper at home.

"She appears to be a happy, typical child and she continues to progress, but she is delayed. The stroke affected two-thirds of the right side of her brain," Anna explained. "The doctors told us to take her home and hope she smiles. What we have with Olivia is way past what we thought and our goal as parents is to push her way past where we think she can go."

Information can be found at the PCVI Society Fundraising link at GoFundMe.com and Olivia's CVI blog, "Hope She Smiles," at oliviacansmile.blogspot.com.

© Copyright 2014 Herald-Star. 

WTRF Channel 7 News report link:
WTRF 7 News report







...our adventure continues
Olivia's mom

ROAD TRIP!!!!

Our next adventure takes us to a suburb of Chicago, Palos Park, Illinois.    

Remembering back 7 years ago, I recall being asked many times during my first pregnancy; "Do you know what you are having, a boy or a girl?”  My response (as so many others have answered this question) was:  "It doesn’t matter as long as the baby is healthy."  As long as the baby is healthy... did not happen for my firstborn.  What we did receive was a devastating diagnosis and an unknown future.  

There are many questions that were swirling in my head during those days, almost like a tornado twister.  All I wanted to do was pick them from the air and find someone to give me answers, someone who could show me a glimpse of her future.  But no one could answer them, then or now.  I admit that some I am still afraid to ask out loud, ones I only ponder in the dark moments.  Maybe I really don’t want to know the answers.

One of these questions:   Will she ever be able to be independent and a productive member of society?  Will she be able to take care of herself financially when the day comes that her parents are no longer by her side?  

Following the birth of a child, parents are not usually preoccupied with what their child will be when they grow up.  But when a child that has a diagnosed problem, we are forced to think about their quality of life.  In fact, that's all we think about.  My question…What can she be?

"It is in our darkest moments that we must focus to see the light” - Aristotle Onassis

So I think...I brainstorm... I wonder -  What is the best way for my Olivia to build a nest egg to secure this future that has so many questions.  A financial future free of a burden that may end up falling on the shoulders of her younger sister. 

Olivia is beautiful, full of life and a soul exploding with happiness.  This is what we need to show the world.  Hmmm….Modeling?   Yes, let’s show the world that children of all abilities can be involved with advertising.  Let’s include all of God’s children. 

When I searched and came across a campaign already in existence, I knew that Olivia could be involved with this positive promotion of special-needs children.  Our current involvement is with Katie Driscoll’s campaign: Changing the Face of Beauty.  This is a creative movement of parents to integrate individuals with disabilities into mass media advertising.  It’s an inclusion of all kids with all abilities.

I then came across a post looking for 16 girls of all abilities and backgrounds, I applied.  This casting call was hosted by the Mighty Acorn Foundation.  Their mission is to restore hearts, ignite dreams, and empower the future of children across the world.  

I am honored that Olivia was chosen to participate in this movement.   This is what takes us on our road trip across three states.   Unlike the adventurous, free-spirit feeling of road trips back in my college days, our road-trips now usually consist of visits to doctors and specialists in the field of Cortical Visual Impairment.  This time, though, it is one filled with excitement and anticipation.  One that we are very proud to be associated with.  

Mighty Acorn Foundation and Changing the Face of Beauty are coming together to ignite dreams and empower futures of little girls by showing what is possible when children of all abilities and backgrounds are included in advertising imagery.  

Follow Olivia and other special children this week on 

     Changing the Face of Beauty: Facebook, Instagram & Twitter  and

     Mighty Acorn Foundation: Facebook

Our adventure continues in the Windy City,

Olivia's mom

When life gives you lemons...

When life gives you lemons... make lemonade, sell it and donate to the PCVI Society

7 years ago (tomorrow) we first met Dr. Christine Roman-Lantzy.  Who is Dr. Roman?  Well, if you live in the world of Cortical Visual Impairment, you know her to be a pioneer and an expert in her field.  She is world known from her research and work with children related to CVI.

Olivia was in the NICU at West Penn Hospital in Pittsburgh, PA after she was born when I first heard the name Dr. Roman.  Her husband, Dr. Alan Lantzy, was Olivia's neonatologist and mentioned that he wanted to have his wife see Olivia.  Due to the severity and the amount of brain damage that Olivia's MRI scans showed, it was likely that Olivia would have visual impairments, if not be completely (cortically) blind.  This means that her eyes are fine, but her brain is not.

A few days later, we were introduced to Dr. Roman.  At the time, I was unaware of this new world and didn't realize that we were in the presence of a celebrity.  Okay, okay... not a typical celebrity as we know it, but a celebrity of this new world that I found myself dropped in.

I remember the day like it was yesterday, August 27, 2007.   Dr. Roman assessed Olivia in the crib and her verbal reaction to each of her assessment areas were positive, not negatives like those I had heard the entire week prior.  This was my first moment of HOPE since Olivia was life-flighted to Pittsburgh.  Ironically this hope came today, my birthday, and it was the best gift anyone could have given me, a new mom.

We continued to visit Dr. Roman and Dr. Lantzy at the Pediatric View Program for follow up visits every few months for the first year.  As each visit passed, Olivia's CVI Range scores improved.  So, today August 26, 2014 we travel to Pittsburgh again to visit with Dr. Roman.  We always wait to hear those positive reactions like we heard when Olivia's future seemed so questionable.  We try to learn and understand more about CVI and the interventions used.  As parents, we are our child's #1 advocates.  We have the responsibility to be their voice, show our passion, and we support our children in all that they do.  We are now turning that passion in to power by supporting those that make CVI their profession.

When I heard about the newly forming PCVI Society, I knew there was something that I could do.  I understood the importance of forming a group where others shared a common goal, better yet shared our passion.  What better way to be an advocate than to support those professionals that spend hours researching, studying, writing, and assessing children with CVI.

My goal was to raise $500 by August 27th, the day we first met Dr. Roman.  This day 7 years ago HOPE entered our room and touched Olivia.  She touched our hearts and we knew that utilizing her knowledge, we could help Olivia reach her goals.  Christine Roman, PhD  and her husband, Alan Lantzy, MD are both sitting board members on the PCVI Society.

The Pediatric Cortical Visual Impairment Society will:
     -Promote optimal care for visual loss of affected patients
     -Promote research in PCVI
     -Develop best practice guidelines
     -Promote interdisciplinary learning
     -Disseminate information more readily and accurately
     -Advocate for patients with CVI, regarding resource allocation

PCVI Society meeting minutes
As you can see from the minutes, there needs to be a reserve of $12,000 before this can go operational.  So, this is our mission.  To raise funds to support this newly developed organization.

We took the 'sour' situation that we were handed and through Olivia's love and Dr Roman's knowledge, we made it so much sweeter.  That is what we did with the lemons that we were given.  We made sweet lemonade, sold it and we are well past our goal.

Our current grand total: $800!!!!! 

Please become a member and supporter of PCVI Society.  It could mean a better future for our children.  A very BIG thank you to those that have donated.  It means more than you know!

To buy a "virtual" lemonade or make a donation: Team Olivia PCVIS fundraiser

...our sweet adventure continues
Olivia's "thirsty" mom

Lucky number 7

7 years ago today my sweet Olivia came into this world. I could easily choose to sit and mourn this day, remembering the events that took place. Instead, I choose to rejoice in the miracle called Olivia. Everyday since has been a blessing and a gift. I am so proud of how far you have come and the strides that you continue to make. May this year be your best yet. I love you, the whole world full! 

...our 7 year adventure continues
Olivia's lucky mom