BFF

   I want to wish Olivia's friend, Haley, a very happy 11th birthday today...

        

We were invited to Haley's 'Harry Potter themed' birthday party not long ago.  It was one of those parties that kids don't forget.  It was almost as if we entered Hogwarts School of Witchcraft and Wizardry as we stepped through the house.   It was a magical sight complete with themed treats and magic wands.  

Now, fast forward to a lunch date with my friend, Kim and her kids.  Her daughter, Haley, handed me a card.  Slightly confused on why she was handing me a card, I smiled and opened it up.

I read her written words, "For my birthday, I asked all my friends to bring a donation for PCVI Research.  We raised 500 dollars!"

Not many times in my life have I been surprised and speechless, but this was definitely one of these times.  What an awesome selfless act of kindness from a child!  Her mom explained to me that it was completely Haley's idea to request from her friends attending the party that in lieu of gifts, they bring a donation for the PCVIS.  It was something she wanted to do.  

Like the card says--

"A friend like you...makes my world a whole lot brighter"  The card goes both ways, Haley. You make Olivia's world brighter just by being you and by being her friend. 

Friendship is one of those areas that I worry that Olivia may never truly experience.  I worry because of her inability to communicate like typical kids do. You have made me realize that true friendship speaks with the heart.  Friends stand together despite barriers and burdens. 

The same way your mom has always stood by me side since 3rd grade...all those years ago.

'Best friends forever' - it can be done.  

Thank you to all of Haley's special friends that gave to a cause near and dear to my heart.  

...our adventure continues
Olivia's Muggle mom

What a surprise!

I was surprised, honored, and humbled to receive this special recognition at the CVI Conference.  Although my name is engraved on the plaque and award, it is all of YOU that have supported our fundraising efforts this past year.  You are the ones that are behind my 'Pediatric CVI Hall of Fame' induction.  I am so proud that Olivia's fundraising was recognized among the experts in the field of CVI.  Now, it thrills me to report that through your generous donations, the PCVI Society is now becoming a reality.  Tears of joy flowed as I accepted this award.


Remarks from Dr. Richard Legge:

"Special Recognition of Anna Ault as the first member of the PCVIS Hall of Fame"

"When conceiving of an appropriate “Thank you” to Anna Ault, it occurred to us that she has done something truly extraordinary.  A simple “Thank you” would not be enough.  Without ever being to a meeting, she dedicated herself heart and soul to making the PCVIS a reality.  We decided that as the history of our society unfolds, there will be those who make special contributions that deserve special recognition.  It was time to create the PCVIS Hall of Fame.  At last night’s Board meeting, Anna Ault was unanimously elected to be the first member of the PCVIS Hall of Fame.  Congratulations Anna!"

PCVIS Fundraising speech

On Saturday at the Pediatric CVI Society meeting I was asked to say a few words about our fundraising. 

These were my remarks:

‘We fundraise for Olivia for a better future. I have a confession to make… The fundraising was completely self-serving. I want better access to pertinent information about CVI. I want access to the professionals in the field. I want to know what the newest developments and research shows regarding CVI. I want to know the best interventions that can be used for children with CVI. I want it for myself and others in my place. 

From the beginning of this journey I have been hungry. Hungry for knowledge, like most of you here. Parents, teachers of the visually impaired, speech therapists, occupational therapist, physicians, ophthalmologists… we are all want to be fed CVI knowledge. This society can feed us.

To start fundraising you first have to be willing to go out on a limb, get out of your comfort zone. Ask for donations. It can be scary, but jump in. We would jump into a pool to save our child if they are sinking to the bottom of the pool. We wouldn't think twice. Jump in, for our children. Save them.

Second; share your story, make a connection, and open up. Open up the dialogue with others about what CVI is. Keep your donors in the loop. Keep them informed of the ongoing fundraising, the intent and goals of the society, and the mission statement. 

This past year, our supporters donated to our cause in good faith. I asked for donations to a Society, that wasn’t even a society…yet! And they did. The American Cancer Society started somewhere. This is our starting place. 

Some of our examples of fundraising include a lemonade stand, an apple cider stand, thirty-one fundraiser, Jamberry fundraiser, Arbonne fundraiser. Other donations came from a fundraiser from Olivia’s elementary school, my co-workers that took up a collection for Christmas, other anonymous donations, and those that donated through the go fund me page. Don’t discount small fundraisers because they add up. If we all participate in fundraising, this society can grow even stronger and even bigger, helping more children with CVI.

Now, that we received the exciting news that this society has the funding to become a reality, we can capture the nonprofit status and start to think big.Capturing people that are passionate and committed to helping our society, and our children, will then help us to pick their pockets.” wink emoticon

Special Presentation of Fundraising Check

Special Presentation of Fund Raising Check by Anna Ault to the PCVIS Board:

"We, the Board of the PCVIS, do accept this tremendous contribution. In one dramatic stroke, the timeline for launching the society has been accelerated by at least a year. We know that represented by Anna’s check are many, many people who gave of their time and treasure to make the PCVIS a reality. On behalf of the children and parents who will benefit, the professionals who will learn, and the scientists who will move our knowledge forward, I give our deepest heartfelt thanks. Thank you." ---Dr. Legge 

Richard Legge MD: Neuro-opthamology; Pediatric Opthalomology; Assistant Professor, Ophthalmology UNMC College of Medicine; and President Pediatric CVI Society

PCVI Society fundraising presentation

I was honored to present the fundraising check to the Pediatric CVI Society!  It was an awesome experience. I was asked to say a few words during the luncheon to the entire group of conference attendees. 

                                         Pictured beside me is the Pediatric CVI Society Board. 

Here are my remarks:

"First, I want to thank Dr. Legge for inviting me to say a few words today, but I also want to thank you ALL for committing to learn more about CVI and ultimately improving the future of those children diagnosed with CVI.

I write a blog chronicling our journey with our 7 years old daughter Olivia and her CVI diagnosis. I asked my husband to be a guest writer this past Father's Day. He said it best when he described our approach we have used with Olivia as a 'all hands on deck' approach. Meaning, involvement of all members of a team is needed and required, especially to do a lot of work in a short amount of time. 

And that's what brings us to Omaha and what motivated us to begin fundraising for the PCVI Society. You are all here, 'on deck'.

When we first started this journey with CVI I considered myself a novice, but now I consider myself almost a parental expert in the field. A field where it's hard to find someone who truly understands CVI. I live with it everyday. 

I believe those of you here, including the parents, come together with a common purpose. I believe in the mission and goals of the PCVI society. I believe a better future awaits. 

Last year as I was browsing the internet, I saw from the meeting minutes was the intent to form a society. But first they needed a startup amount of $12,000 before that could turn into a reality. I knew we had to help. Our initial goal was $500. The amount grew and we continued to surpass each new goal. Now, I encourage any of you to take on the challenge of fundraising. So, 'All hands on deck' of this ship we call CVI. 

It is with pleasure that we present our fundraising in honor of our sweet Olivia for $7,700 to the Pediatric Cortical Visual Impairment Society."

Our adventure continues...
Olivia's #1 fundraiser

A (special-needs) Father's Day Reflection

Today being Father's Day, our house was probably like many others. I was awakened by two little girls with a gleam in their eyes as they wished me a Happy Father's Day. Soon to be followed by presents and many hugs and kisses. A special song was even sung to me by my youngest daughter, Amelia, as my oldest daughter, Olivia, strummed a play guitar. Morning turned to afternoon and I was off to work. Olivia kissed me goodbye and as she hugged me, there were tears streaming down her cheeks just because I was leaving.

As I drove to work I thought about my father who I recently lost in March. I thought about how he was always there for support or just to talk things over with. Then my thoughts switched to Olivia and her special-needs. I thought about how far she has come and how far she still has to go.  I thought about how much she needs her mother and I and what would happen to her if we weren't here.

It was almost eight years ago when I became a first time father. Although I was older than most first time fathers, I was still nervous and a little apprehensive. I also knew it would be a life changing event.  
        Little did I know how life changing it would be.

Less than twenty four hours after Olivia came into this world I was told that she had a stroke prior to birth. My knees went weak and my life was forever changed. After breaking this devastating news to my wife, who was in a hospital 40 miles away, we learned of the extent of the damage and the limits the the future might hold for her. We soon entered a world unknown to us. A world of doctors and therapists, educators and aides. From this specialist to that specialist to physical therapy to occupational therapy to speech therapy to Easter Seals and back, we soon had a team surrounding our little Olivia that had her best interest at hand. 

Behind every good father there is a great wife and mother. As a father I am thankful for my wife Anna. She has made it her mission to help Olivia be the best that she can be. And her mission has become our family's mission. One doctor told us not to expect a full recovery but to hope for one. He also told us that if we didn't hope for a full recovery that we wouldn't do the things necessary to facilitate it. I believe this became our family motto. 

Olivia met some of her milestones during her first couple years. And she surprised us with the way she was progressing. It probably wasn't until the birth of our second daughter that we fully realized Olivia's deficits. All that we knew was that we wouldn't have a second chance to go back and try a different path for Olivia's recovery. So when it came to doctors and therapists we chose the "all hands on deck" approach. 

After nearly eight years we still stick to that master plan. Therapy sessions come in many forms. From scheduled sessions to constant correcting and teaching at home, we continue to push Olivia forward. Even Olivia's little sister helps her along the way with everything from helping her dress to correcting her speech. 

But all along this 8 year process Olivia has also turned the tables and taught me many things as well:

Olivia has taught me how special it is to hear your child say "daddy".
Olivia has taught me how special it is to hear your child say the alphabet.
Olivia has taught me how special it is to get shoes on the right feet.
Olivia has taught me how special it is to run to first base.
Olivia has taught me how special it is to ride a bike.
Olivia has taught me how special it is to go to a dance recital or a school program
Olivia has taught me how special it is to welcome family and friends at the door.
Olivia has taught me how special it is just to be able to sing Happy Birthday or today say "Happy Fathers Day"
And most of all...
Olivia has taught me the true meaning of unconditional love.

As a father I want the best for my kids. And like most fathers I want my kids to be perfect. But I have learned that "perfect" is a comparative word. Olivia is perfect in my eyes and she gets more perfect every day. My wish for her is that she continues to improve and amaze us with her infectious personality. My promise to her is that we will do everything necessary and never quit striving for a life without limits.

Love you Livi ❤️❤️❤️❤️❤️

Mother's Wing

If I could talk I surely would say,

Thank You for helping me along life's way.

If words came easy I would eagerly share

secret adventures and dreams, if I dare.

You would be able to hear giggles and laughs,

with good friends I would make in my grade school class.

I would sing and dance to my favorite songs,

if my legs would let me do no wrong.

I would jump rope and run, then play hide n' seek,

where no one could find me, from the bushes I'd peek.

If I could play games like ball and red rover,

maybe I'd get invited to parties and sleepovers. 

If I could wake up and get dressed on my own,

you'd laugh at my style, snap a pic on your phone

If I could just eat without making a mess,

you'd use all those napkins so much less.

If I could one day learn to read and to write

I would script you a poem to hang in plain sight

I might author a book telling my story,

imagination would flow...to God be the glory!

If I could just see like all of the others,

I would notice small details and relish the colors.

We could sightsee and travel, show me the world

My eyes would be open...great wonders behold.

Even through challenges it is plain to see,

I know how proud you are of me.

But until I am able to do all these things,

I'm blessed with the safety of my dear mother's wing.

                 


Happy Mother's Day to the mothers of 
            special-needs children 
                    everywhere.  




Our adventure continues...
The luckiest mom in the world

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