Kaylee’s mom wrote this letter that turned me into a teary wreck:
“Kaylee came to us on a random Thursday afternoon. I received a phone call as I was making dinner for my recently adopted son, Aiden. I stopped everything because I knew whom the call was from. It was the Department of Social Services calling. They had a situation and needed a home for a two week old little girl. Kaylee was at our doorstep two hours later.
Kaylee was the littlest baby we had ever cared for. She had dark black hair and bright icy blue eyes. The second I held her in my arms I knew she would change my life as much, if not more, than I would hers. The process of adopting Kaylee took a little over a year and was the hardest situation I’ve ever watched a child go through. She amazed me with the intuitive nature she had and how strong of a fighter she was even at a few weeks old. She had such a voice, that if she wanted you to know something you would know … even though she had no words. She was a little over age one when she became our daughter. It was very apparent that she had bonded to us fully and we, fully, to her. She was the daughter I had waited ten years for and my little angel.
Through her first two years she struggled with meeting her milestones. We longed for the day she would call us mom and dad, but that day would come late for us. Kaylee was non-verbal non-mobile until after two. After years of intervention with occupational, verbal and speech therapists, not only did she speak, but also she sang. Not only did she walk, she bounced … and you should see this girl run!!! Her most apparent strength is her determination. It doesn’t matter what it is, whether she wants to stay up five minutes past her bedtime or she’s rock-climbing, she will fully commit to accomplishing what she wants to do. By age 4.5 Kaylee had tested at age appropriate: occupationally, physically, and in her speech. She also had overcome much of a sensory disorder.
There are few people Kaylee truly lets in, but those she does, are unconditional relationships. I attribute this to her ability to see through what people say with how they act. She prefers the truth rather than to be sugarcoated. She can see through ulterior motives as if they were glass. Honesty and bluntness make it farther with her than anything.
Mother’s day of 2015, a few months after we had moved to Canada, we went on a road trip to see Calgary and visit the hyped up Zoo. We spent the entire day, sun up to sun down, walking and exploring. The hype was right, it blew our minds and it was such a wonderful place unlike any zoo we had been to before. That day we walked over 15K steps. That night in the hotel room Kaylee’s body explained that something was wrong in the only way it could. She had her first of many seizures she can’t wake up from.
Lying in the hotel room next to me, her little body thrashed violently about. Her eyes rolled back in her head, she was drooling. I had no idea what was going on. I thought maybe she was exposed to something at the zoo or possibly when she fell earlier at the zoo she had hit her head harder than I thought. My mind raced as I tried to come up with a reason as to why this was happening. I had experienced a seizure before but only with animals. This was nothing like that. It was violent. And it was my little angel.
After a few minutes she finally stopped seizing. She was blue around the mouth and still unconscious. I thought she was in a coma. The ambulance arrived a few minutes later. They tried pain stimuli and she still didn’t wake up. It was the most terrifying moment of our lives … to that point, anyway. On the way to the hospital she awoke to the blaring sounds of the ambulance and tubes all over her little body. One would think how terrifying that could be, but not for Kaylee. She woke up, still blue around the mouth, and smiled. She said hello to the EMT and myself. She asked where we were going and told us how much she had always wanted to ride in an ambulance. At the hospital they performed no tests. They explained it as a random incident that would likely not happen again.
Kaylee had been experiencing odd behaviors and new symptoms after she started kindergarten. She was having a tonic clonic seizure about once every two weeks, drop seizure, and partials on occasion. She was also staring off into space while her body went stiff for long periods of time (up to 15 min.). She had many embarrassing moments from her bus driver finding her under the seat and panicking because he thought she had passed away, all of her classmates experience a tonic clonic full seizure, to a teacher finding her with her head in a sink unconscious. Through all of this, she has been so very strong and positive but she does still have nightmares and I’ve seen her loose a bit of her sparkle.
On her day off from Kindergarten, she woke up bright and shiny as always and said she was really hungry. I made her breakfast and by the time I sat it down in front of her she had big black bags under her eyes and she said she didn’t feel very good. She said she felt as is she was on a boat going up and down and she saw black. Her head and stomach hurt really badly and she asked for some love. She came and snuggled up in my lap. That was the last time I would see my little angels eyes for 11 hours.
She went into a state called non-convulsive status ellipticus. There was no shaking, no gurgling or signs that there was anything wrong. It looked as if she were in a peaceful sleep. I only knew something was wrong when I couldn’t wake her up after two hours of what I thought was a nap.
I took her to the ER where they rushed around poking her with needles trying to wake her up. Nothing worked. I again was faced with the scariest time in my life. Her heartbeat was erratic, her oxygen saturation was low, her blood pressure was that of an old bacon loving 80 year old and she couldn’t wake up. Through the next hours the physicians tried to stabilize her until she finally opened up her eyes and told us she was hungry and laughed. After drinking and eating she went back into status only to be pulled out a few hours later by another dose. She was transported to the Children’s hospital via ambulance. She laughed and told all the EMT’s how she was going to become a nurse some day. I think all of the ambulance rides were starting to affect her future career goals.
A few days later I was thinking this has got to be rock bottom. This has to be the hardest point and soon things would change for the better. After all, she had such a hard beginning. After only a few years, she couldn’t be facing more tough times. All I wanted was for her to be at peace. Enjoying the typical struggles of a five year old. Thank goodness, to date, it was the hardest time for her. But she has again taught me how strong she is and how her normal is the only normal that matters.
Because we could’ve lost Kaylee that day, they finally took her case seriously and referred her to an epilepsy specialist in Calgary. Shocking!!! We were moving to Calgary in a few months. It came full circle. Where her seizures began, also where they would be diagnosed.
After navigating the new to us medical system in Canada and nearly a year of testing, Kaylee was diagnosed with Panayiotopoulos Syndrome. It’s a nasty little syndrome that includes digestive problems and seizures. Additionally, she has been diagnosed with a combined type of ADHD. She is currently at high risk of SUDEP (Sudden Unexplained Death in Epilepsy) because of her variance of seizure types and her days when she goes into status (any seizure over 5 minutes damages the brain. Hers can last up to a full day.).
She is still frequently teased at school. I’ve watched the effects on her self-confidence. It’s heartbreaking! She is in occupational and physical therapy at school and has learning delays.
I believe she would be a great candidate, not only because she is strikingly beautiful, but also because she needs something in her life to make her FEEL beautiful; Something to make her see herself as her father and I see her. I want her to know that life isn’t always hard. Thanks for taking the time to read her story and to provide this opportunity to a special little one. Whomever you choose will be a lucky little one and I can’t wait to see pictures!”
Heather says: I read that letter and CRIED. Even re-reading it now makes me a little sniffly. As a person with Epilepsy myself, I know what it feels like to have that uncertainty and fear of making a public scene with something you can’t control or fear of hurting someone else. I asked Kaylee if she had any requests for me for her photos. She asked for ‘rainbow and unicorns’. I replied back that I didn’t own a rainbow dress and that unicorn sessions were on a different weekend, but that I’d do my best to make things fun for her regardless. About a week before our shoot, Skye the Magical unicorn turned out to be available, so I scrambled to borrow a rainbow dress for her to wear. It all came together right before Kaylee and her mommy flew in to Georgia, and Skye came with presents for Kaylee too! A purple shirt and beanie baby unicorn! Purple happens to be the color for epilepsy, Skye didn’t know it at the time!
Kaylee arrived and true to her wonderful personality, she gave Skye a hug and a kiss and a few treats and then turned to me and asked “Where will they go while we’re taking pictures? Will she still be here when we’re done?” She hadn’t thought Skye was there for her photos, and didn’t complain at all that 5 minutes was all she’d gotten. No temper, no whining, just acceptance of what she thought she’d already gotten. When she found out she was taking pictures with Skye AND that she got to wear a rainbow dress to do it in, she was over the moon.
Kaylee is utterly MAGICAL in spirt. She has a sparkling, glittery giggle and incredibly mischievous personality. For the first half of the shoot, she was a perfect model and did every little head tilt and foot turn I asked her to, loving every minute of it. About halfway through, she decided that she was going to give as good as she got. She was sitting on a fountain and looked at me and just started… laughing. It was hilarious. and almost like she couldn’t control it.. except it was all a ruse. I asked her what on each she was laughing at and she says (in between gasping giggling breaths) “It’s just.. your face! … There’s a… frog.. on your head!” Except of course there was no frog on my head. And she just kept going.. and going. Laughing until we were all laughing with her, and it was all made up! By the end of the session she was running around like mad, dancing and twirling in her rainbow dress and stopping to feed treats to Skye like any other kid. It was so nice to get to see her be a normal child without fear for a little while.