Sunday, May 23, 2021


 GO BIG or Stay Home!

After years of going big for Kellisa's birthday, we stayed home for the second year in a row due to the global pandemic. We had HUGE plans last year for Kellisa's 21st birthday, but didn't even think about doing much this year. We're still playing it safe since Kellisa is considered high risk. 

Kellisa woke up a 22-year-old young lady and enjoyed a low key day at home with family. She enjoyed a push through the neighborhood before opening presents from family and friends. Kellisa watched and listened to plenty of The Wiggles and Hannah Montana. She selected a Poke bowl with brown rice, raw salmon, avocado, and house sauce for dinner. We ended the festivities with a best of both world cake, half vanilla and half chocolate. All in all another great birthday.

We are so ready and hopeful.....2022 will be a very big year as we make up for lost time! 

Enjoy a few pictures from today:

Saturday, May 22, 2021

Kellisa Loves it Loud...Now

   Kellisa turns 22 on May 23rd and due to the ongoing pandemic, we do not have anything big planned for the second year in a row. I came up with the idea to share a few Kellisa stories in the week leading up to her big day. I'd like to post one a day, but only have two planned so far. These might be stories shared for the first time or stories that can be found elsewhere, but I'll add new details and/or more background. 

It's easy to find Kellisa if there's loud music blasting from speakers because she will always wheel as close as she can and park herself for maximum exposure. This is true of every dance she attends and PE class at school when they play music in the gym. And she's not shy, if its not loud enough, she will ask for more volume. 

Kellisa spent 113 days in the NICU with alarms and bells going off around the clock, so you might assume she was accustomed to loud noises from her early days. You'd be wrong. Kellisa was petrified of noise, any noise, not just loud noise. Sudden noise was the worst. Kellisa would cry uncontrollably for hours when startled. She was inconsolable and would approach hyperventilating. It was horrible.

Lisa and I lived on eggshells. We couldn't even turn on the water at the kitchen sink if Kellisa was within hearing range and her hearing was heightened. One of us would have to take Kellisa to the farthest bedroom, close the door, and hug her with one of her ears pressed against our chest while using a free hand to cover her other ear. This would give the other person a few minutes to make minimal noise in the kitchen. Don't even think about opening a can of pop. 

It was always bad when we accidently made a sound or just let our guard down for a second because it would be at least 45 minutes of Kellisa screaming and shaking. While we could mostly control what happened inside our house, controlling what went on outside was a different challenge. Normal noises would send Kellisa crashing, a dog's bark, a motorcycle, kids laughing, literally any sound. Living life on eggshells was not pleasant. 

Slowly, extremely slowly Kellisa would get a little better at handling noise. She was always OK with riding in a car and even at her many doctor and therapist visits. We figured it was familiar sounds and she just struggled with unknown and sudden sounds. It didn't matter how loud or soft, any sound was scary.

Eventually, we tried to take Kellisa to a restaurant right before her first birthday. We chose The Lighthouse Café in New Smyrna Beach, FL for this experiment in sound. We made it to the front door and as soon as I opened it and we were hit with noise, Kellisa started her meltdown. We left defeated, but wouldn't give up. A few months later, we returned to The Lighthouse Café. We made it to the Hostess Counter before having to leave.  

This was repeated every couple of months and eventually we were seated, but left before ordering. Then, we ordered, but would have to leave before the food arrived. You guessed it, we ordered, the food arrived, and then a plate broke on the floor and we left without eating. We probably went to the restaurant 12-15 times and never ate a meal inside. We relocated to Jacksonville and continued our quest to eat out with Kellisa. At some point, I believe it was at an Olive Garden, we finally made it through a meal without having to carry Kellisa away. We always said we would go back and eat at The Lighthouse Café, but sadly it closed before we got the chance.

Kellisa still jumps at every little unexpected sound, but she is likely to giggle and brush it off as funny. She hasn't cried in probably close to 20 years from a loud noise. Kellisa has loved music since Lisa found The Wiggles on the television in the hospital when she was 4 (story can be found here). Since Kellisa discovered her love of music, she loves it loud! 

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Friday, May 21, 2021


  Kellisa turns 22 on May 23rd and due to the ongoing pandemic, we do not have anything big planned for the second year in a row. I came up with the idea to share a few Kellisa stories in the week leading up to her big day. I'd like to post one a day, but only have two planned so far. These might be stories shared for the first time or stories that can be found elsewhere, but I'll add new details and/or more background. 

Kellisa in her room (5/21/2021)

Anyone who knows Kellisa, knows she loves spiders!

What you might not know is where her love began.

We can trace this obsession back to when we visited Grand Canyon National Park back in March 2006. We were at the gift store and wanted Kellisa to pick out a souvenir T-shirt. The wall was covered with display shirts and Kellisa was immediately drawn to an orange shirt with a black, hairy spider with 8 legs sticking out the front. We were surprised by her choice and guided her to other shirts, but she kept coming back to the creepiest shirt on the wall to the point she was adamant on her choice. Lisa made the purchase and Kellisa was happy.

Kellisa wore the shirt with pride and loved all the attention. She loved that most people acted scared and shocked because the spider was so large and realistic looking. She wore that shirt every chance she got and we finally had to retire it many months after she outgrew it. We still have the shirt safely packed away somewhere in our garage. When we returned to the Grand Canyon in June 2010, we hoped to buy the same shirt in a larger size, but were disappointed to find the shirt no longer sold at the gift shop.  

Over the years, Kellisa has added to her shirt collection with all kinds of creepy shirts. Her vast collection includes spiders, snakes, lizards, alligators, sharks, bees...really anything that would scare the average person. Kellisa's collection has grown to include realistic decorations all over her bedroom. At any given time, you can find a rattlesnake lurking from under her bed to a flying bat circling her ceiling to a giant tarantula staring at you from some dark corner. We never know what we might see in her room and joke that if a real creature somehow got loose in her room, we'd never know it was alive. Kellisa also has an impressive scientific book collection featuring all the creatures she loves. Kellisa can spend hours flipping through her books looking at the realistic photographs.  

Kellisa's room is just how she loves it and we need to warn people before they enter her room. They usually look at us like we're crazy and probably think, "How scary can it be?" which is usually followed with a gasp or two, then thanking us for the warning.

Kellisa also loves visiting zoos with the snake house her favorite exhibit. We've even visited a bug museum once. Her younger sister, Egypt has always been around Kellisa and her unusual interests and also loves creepy creatures. I need to pry them away from the snake exhibit if we happen to stumble upon an active snake...they could watch for hours. 

Despite wearing that original spider shirt dozens, if not hundreds of times over the few years it fit, we cannot find a single picture of Kellisa wearing it. I also spent too much time unsuccessfully trying to find an image of the T-shirt online. I'll update this post (and probably write another) when we come across her shirt someday when going through the kid's clothes in the garage.

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Wednesday, May 19, 2021

True Friends

Jenny Sloan had no idea she would be the 2nd guest blogger in the almost 10 year history of Kellisa's Path when she posted the following heartfelt words on her Facebook status tonight. The timing couldn't be better as we approach Kellisa's birthday. There was a time when I wondered "Why?" Kellisa survived when two of her siblings didn't. I eventually came to the conclusion Kellisa survived to make a difference! To make an impact! To inspire! To change the world! 

We couldn't be prouder of Jenny who is also making the world a better place and we consider her an honorary daughter. 

  Appreciation post today for Kellisa. I got to talk to my best friend in the world today on facetime after an emergency plumbing accident and after calling everyone in my contacts, her dad, Chris Kain, was the only one to respond. 😂

When I tell you my heart could not possibly be fuller during that call, I mean it! I love this girl with all my f*cking heart. She is the one who motivates me to keep pushing on. She is the one that keeps me kind, keeps me inspired, keeps me loving and myself. I wouldn't be alive without her. Middle school is around the time you develop yourself. I met Kellisa in the 7th grade. We are 22 now. I would not be who I am without her massive impact on my person. I will be FOREVER grateful for that. I am the person I am today because of her. I missed her laugh so dearly, I was so ecstatic to hear it after so long. I missed her blowing kisses, and I heard her speak my name for the first time in a year. Tears. Kellisa, you mean the entire world to me. I can't imagine life without you and you just reminded me tonight how beautiful, special, and lovely you and your family are to me and everyone else in this world. I love you.  ♥️

Tuesday, May 18, 2021

Best of Both Worlds Tour

 Kellisa turns 22 on May 23rd and due to the ongoing pandemic, we do not have anything big planned for the second year in a row. I came up with the idea to share a few Kellisa stories in the week leading up to her big day. I'd like to post one a day, but only have two planned so far. These might be stories shared for the first time or stories that can be found elsewhere, but I'll add new details and/or more background. 

Like most 8-year-old girls in autumn 2007, Kellisa was obsessed with Hannah Montana. When it was announced that Hannah's Best of Both World Tour would stop in Jacksonville in January 2008, I knew we needed to be there. 

We decided early on to let Kellisa live as normal of a life as possible, even if we didn't have to and/or it would be easier not to live life to the fullest. Kellisa would have never known Hannah was playing a concert so close, so it would have been easy to not go. But I knew and I also knew if Kellisa was a typical kid, she would know and would be begging and pleading for tickets. 

I was at my computer several minutes before the tickets went on sale with my credit card propped up so I didn't have to go looking for my wallet once I selected the tickets. At 10am exactly, I started furiously clicking away and each time I was turned away. I knew the show would sell out in minutes. I started to get nervous after 3 or 4 minutes and still no tickets. Any hope of being on the floor and close to the stage faded and within about 10 minutes, the show was sold out. I failed to get tickets for Kellisa. I was devastated, but at least she would never know, right? 

I sent an email to the arena explaining how my daughter uses a wheelchair and asked if there was any chance of getting special seating. Not surprisingly, when they wrote back, I was advised that all the wheelchair seating had sold out as well. 

At least Kellisa would never know what she missed. That was the story I tried telling myself, but I couldn't help feeling like I let her down. I didn't realize it at the time, but the mental torture in my head was being suffered by parents across the country as a ticket controversy was growing. Due to unprecedented demand for Hannah Montana tickets, brokers where buying many of the tickets before the general pubic had a chance and turning around to sell them online for hundreds and even thousands of dollars. I never had a fair chance and that did not help my mental state.

Jacksonville was no different than any other city, Hannah tickets on the secondary market ranged from $300+ up in the nose bleed sections to several thousand a ticket to be on the arena floor. I wanted Kellisa to be in the building, but I also wanted her to have a chance to see the stage. 

I became obsessed- watching eBay several times a day, every day, hoping to find a deal or maybe the prices would drop as the concert date approached. Neither of which ever happened.

The Jacksonville date was a Wednesday. A school night. I had taken the day off of work, just in case I figured out a way to attend. For months, I was searching for 3 tickets so Lisa and I could go with Kellisa, but since we were now out of time, I searched for 2 tickets together. I figured one parent and Kellisa was better than not going at all, but 2 tickets were just as much or more compared to 3. I started getting crazy thoughts of paying the exorbitant prices. I knew Lisa would be mad, but I was thinking about the old, "Easier to ask for forgiveness than permission" tactic.

A light bulb went off before I could do anything to get myself in trouble, I decided to look for any single tickets. I found one in the upper sections for face value and bought it. I looked for more and found another in the middle sections for 2 or 3 times face value. I bought that one too. I kept searching and a 3rd single seat became available, this time on the floor for 5 times face value. I now had 3 tickets. But first, I had to get some cash from the bank and drive around the greater Jacksonville area like a madman to actually get our tickets in my hands. 

It didn't matter that we had 3 single tickets scattered throughout the arena, I knew we would at least get in and I believed we would figure something out once inside. 

As I handed our tickets at the door, they were scanned and the man said, "You know these aren't together, right?"

Of course I knew, but I didn't care as we entered the arena which was already electric with thousands of little girls about to have the best night of their young lives. 

My first idea was to try and get on the floor, might as well try for the best. We were stopped and asked to present our tickets before we could enter the floor. I handed the lady our tickets with the floor ticket on top. Sadly, she looked at all 3 and said, "These aren't together. Only one of you can enter."

I was expecting that response and then started to plead our case. She couldn't help us, but pointed us in the direction of Guest Services. Once there, an extremely nice and compassionate lady helped us. I didn't even need to beg and plead. She told us to follow her and a few minutes later, we were at a wheelchair section with a perfect view of the stage. But, there was a problem. It was filled with mothers and daughters. None of them in wheelchairs or walkers or giving any indication why they needed wheelchair seating. 

The lady from the arena talked to some of the moms and they agreed to make room for us and to their credit, they gave Kellisa the best place to sit. Lisa stood behind Kellisa and I behind Lisa so we didn't block anyone's view. 

I am very critical of able bodied people for stealing the extremely few benefits afforded to people with disabilities. From where I was standing, I could see three additional wheelchair sections and not one wheelchair. My emotions were mixed. I was furious, but also thankful to have gotten Kellisa to where she needed to be.

Some of you might be thinking, maybe those other kids had invisible disabilities. Maybe the moms were disabled. All valid points, but before the concert started, a couple of the moms came over and basically told us how they scam to get the tickets by going for the wheelchair tickets first due to lower demand while everyone else fights for the regular seating. They were trying to be nice and share their secret to getting seats, but I also saw it as an admission of stealing something from someone with disabilities. 

Rant over. Kellisa was inside the arena! My mission was accomplished and like thousands of other girls for that night, she had the time of her life! This concert was two months before we purchased our first digital camera, so we didn't take any pictures. The above picture is Kellisa enjoying herself at the beach in her Hannah Montana concert t-shirt.

Lastly, it's been over 13 years and my ears are still ringing from all the little girls screaming their heads off for hours inside a building designed to maximize the sound. I heard the tour manager for Hannah describe the crowd as, "Worse than standing behind a jet engine."  

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Sunday, May 16, 2021

The Lost D Sound

 Kellisa turns 22 on May 23rd and due to the ongoing pandemic, we do not have anything big planned for the second year in a row. I came up with the idea to share a few Kellisa stories in the week leading up to her big day. I'd like to post one a day, but only have two planned so far. These might be stories shared for the first time or stories that can be found elsewhere, but I'll add new details and/or more background. 

Kellisa calls me "Ah" instead of dad or daddy. For those who haven't heard her call me Ah, I describe it as, "it's dad without the Ds."

20 years ago this month, Kellisa went in to the emergency room at Arnold Palmer Children's Hospital in Orlando, FL where it was determined she needed emergency brain surgery. Kellisa has gone through 23 surgeries in her almost 22 years of life, but in May 2001 it was her 7th total, and at the time, 5th brain surgery. 

Before they wheeled her away for surgery, we found out that the insurance we had through my employer at the time denied the surgery. In their opinion, it was not necessary even though one of the world's leading pediatric neurosurgeons deemed it not only necessary, but an emergency which should be performed as soon as possible to prevent further damage. 

As I was getting my HR Representative involved, Lisa was working with the hospital and neurosurgeon to explore our options. We could see Kellisa was suffering and sided with the belief she needed emergency brain surgery to relieve the pressure caused by a failing shunt. We were unable to convince the insurance company to cover the surgery, so we committed to paying the hospital and neurosurgeon out of pocket- not a percentage, but 100%. We hoped that we could appeal, beg, and plead our case after the surgery.

We gave the neurosurgeon everything we had and charged every credit card we had to the max after having limits raised. When we left the hospital a few days later after a successful surgery, we literally had 84 cents to our names and just enough gas in our car to get us the 69 miles to our house. We had limited food in our house that would have to last a week. Thankfully, Kellisa was still breastfed and we had a weeks worth of diapers. 

Lisa and I survived on water, some old crackers, rice, and other scattered undesirable food until I got paid again and we could buy a few groceries. I rode my bike to and from work because we couldn't afford to use the remaining gas in case we needed to drive Kellisa somewhere. For months, we could spend about $20 a week on food. I would buy 2 packages of frozen burritos and a 10 pack of 3 Musketeer bars for myself. That is all I ate after deciding it was the cheapest purchases I could survive on for a week. The remaining $16 dollars a week went towards Lisa's food and household necessities. Lisa survived on a jar of peanut butter, some bread, and a few apples.

A week after Kellisa's surgery, she turned 2-years-old (pictured above). A huge milestone!

We went back and forth with insurance and ultimately lost our appeal. We were on the hook for brain surgery even though it was obvious Kellisa needed it now that she was back to her normal self. It was like we mortgaged our future to pay for this surgery and it ended up being a 20 year mortgage as Lisa just paid the last of the obligations earlier this year.

I will finish this story by answering why Kellisa calls me "Ah".

I was changing Kellisa's diaper on our bed one day when she looked up at me and said, "DAD" with a big, beautiful smile. I tried to call out for Lisa, but I was now the one speechless as Kellisa was far behind on speech milestones and this blurting out a word was unprecedented. Eventually, I was able to get Lisa's attention and we both heard her say a loud and clear "DAD" a few more times. From her smile and facial expressions, we could tell she was very proud of herself. 

Less than 24 hours latter, we would find Kellisa limp and lethargic before rushing her to the hospital at the beginning of this story. She would wake up after the surgery with the life saving hydrocephalus pressure relieved, but she has never said, "DAD" again. In fact, she does not have the ability to make the D sound for any word. We now joke that the neurosurgeon drilled through the part of her brain that controlled the D sound and it's probably accurate.

While I can still picture her on that bed with a smile and I can still hear her perfect "DAD" in my memories, I'd give anything to hear it again or be able to watch it on video. We had no way of knowing those would be the first and only few times Kellisa would be able to say, "DAD."

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Thursday, May 13, 2021

Spring Break 2010 (UT, AZ, & NM)

Long overdue pictures from an amazing trip 11 years ago:

 While flying to Las Vegas, our path included this view of the White Sands Missile Range (lower right) and White Sands National Monument (upper left). The entire route of the Bataan Memorial Death March can be seen in this photo:

Zion National Park was the first stop of our 2nd annual father/daughter spring break vacation to the Southwest:

Wednesday, May 12, 2021

Growth on the Trails

 Before we were going where wheels weren't meant to go, we were carrying Kellisa in our arms, over my shoulder, and in chest and back carriers. When Kellisa got too big to carry, we got her first chair. Since she uses her wheelchair everyday, it takes a beating and gets replaced every five years. In the early days, I pushed Kellisa on ADA trails and a few we had no business being on with a wheelchair. When Kellisa was maybe 5, we purchased the largest jog stroller we could find on a store shelf and we started pushing our abilities on real trails. As Kellisa was outgrowing her jog stroller, I spent many hours researching jog strollers for disabled children and young adults. We've purchased and outgrown many jog strollers and even broken a few on some pretty intense trails. As the market caught up to our activities, we purchased our first true off-road chair for real trails. Kellisa has even gone through several travel wheelchairs (easy to fold and only a few hundred dollars) over the years and each one has found its way out on a trail. 

Below is a visual history of some of her wheelchairs and all of her jog strollers (as of May 12, 2021):

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