Hi there, everyone! I’m Amber Pierson, wife, mother and entrepreneur. I used to teach Art and English Second Language (ESL), until I had my son, Kai. Having him changed everything for me. I’ll get into that in a minute. After having him, I decided not to return to teaching and started my own business so I could stay home with him.
My first encounter with Kent Smith Photography was not that long ago, when I had a session as part of their new Noir Collection. After that experience, I knew I wanted to be more involved with KSP and recently became an Influencer for them!
So, a little more about Kai and our most recent involvement with KSP. Kai was born with several brain anomalies and a condition called Hydrocephalus. My husband and I knew nothing of his condition until I was 36 weeks pregnant. After his birth, we knew that there would be a long road ahead of unknowns. You see, hydrocephalus means water on the brain, and the only current “fix” for it is a device called a shunt that is placed in the patients’ brain. These devices work decently well, but they are not a cure. Just as any foreign device within the body, they can malfunction and to fix it requires invasive brain surgery. Kai has had two brain surgeries in his short 19-month life so far. In addition to these challenges, his brain anomalies caused his optic nerves not to form properly so he is also legally blind. Because of his conditions, Kai is developmentally delayed and has several weekly therapies and many, many doctors. I love using this poem by Emily Perl Kingsley as a frame of reference to tell others what it feels like to raise a child with special needs.
“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned. And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss. But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.” – Emily Perl Kingston
My first shoot as a KSP Influencer was with our sweet Kai. Capturing images of our little man to help share our story was so important to us. Amanda and Chloe were AMAZING! They were incredibly patient with Kai and Amanda even managed to capture photos of Kai “looking” at the camera, which he NEVER does! They captured moments we never thought we would be able to. My husband and I have made it our mission to spread awareness and advocate for kids with challenges, like our Kai. We’ve become very active in the Hydrocephalus Association, an organization fundraising and working to find a cure. On October 6, the first ever Hydrocephalus Walk in Columbus, Ohio is taking place! As part of the Walk, we have a team called Kai’s Krusaders that we are working to raise money for and donate in his name.
On August 10, 2019 we are hosting a “Ladies Night Shop & Sip”, where we will have several vendors there selling their products, donating a percentage of their sales to Kai’s Krusaders AND donating items for a drawing that all proceeds raised from will go to the Hydrocephalus Association. The event will take place at “Cheer Force One & Better Together Playnasium” at 5089 York Rd. SW Pataskala, OH 43062 from 6-9 pm. It is free to attend the event and you can find Kent Smith Photography there offering a wine pull, including certificates for a discount on some AMAZING photos of your own! If you feel compelled to walk with us on October 6 or want to donate to our team, you can do so at the link below. We are so thankful for the support of KSP and their involvement with our Kai.
http://support.hydroassoc.org/site/TR/WALK/General?team_id=3914&pg=team&fr_id=1445
