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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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:

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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Beautiful Memories

Kellisa having an "Austin Powers" moment at the Soo Locks.
Sault Ste. Marie, Ontario Canada

Kellisa out grew or stopped using these chairs years ago and they've been taking up space we don't have to spare. I should have donated the chairs years ago, but I've struggled to find a place that would take them. We even moved a couple of these chairs across the country when we relocated to California from Florida in early 2016.

I even tried to give them away online, just asking for shipping in return for a free chair without any success. The chairs are well used and need a little love, but I figured they could be a real blessing for several families not in a position to get new chairs.

It was time and I was determined to give them away, somewhere, and I didn't care what I needed to do or how far I needed to drive. I wanted them gone and in families who needed them. We would never use them again!

I found a place about 100 miles south of us and the lady seemed genuinely excited when I explained what I had to donate and why. Egypt decided to go along for the ride. As the miles passed and Egypt was lost playing games and listening to her music, I found myself feeling melancholy. I knew I was doing the right thing, but couldn't help going through the memories in my mind of Kellisa in her chairs.

These chairs represent comfort, freedom, and independence for Kellisa. Her everyday school chair with bus tie-downs represents 5 amazing years of school in Florida. 

The blue jog stroller covered many miles of trails. 

The tan jogger was the "vehicle" I used to push Kellisa down to the shore of Crater Lake back in 2009 while risking arrest. It is also the chair we overloaded at the Grand Canyon back in June 2010.

But, it was Kellisa's yellow travel chair that created the most sorrow while reflecting. This chair became part of Kellisa as she made great steps in becoming the young lady she is today. We purchased this chair to save her expensive, every day wheelchair while traveling. This chair traveled on hundreds of flights and was used for Jaguars games when we had season tickets. We even traveled to an away game in Detroit. This chair was an extension of adventurous Kellisa and never let her down. I can only hope this chair and the others create similar memories for new families.

We arrived at the Society for disABILITIES in Modesto and were greeted by the lady from the phone. She helped us bring the chairs inside where we met the man who would clean up the chairs and make sure they were safe and ready for their next occupants. This made me feel good knowing they'd be updated by an expert. Their sincere appreciation replaced my melancholy with gratitude. I was thankful to be helping others.

4 Chairs

Countless Adventures

Thousands of Miles

So Many Beautiful Memories...

Many airline tags remain from trips long ago.

Goodbye

Thank you!

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"The End"

 April 7, 2021

Oakmont High School

Roseville, CA

Kellisa's first day of school.
Mandarin Oaks Elementary - Jacksonville, FL
August 7, 2002

Today is a sad day. 

Lisa and I will be attending Kellisa's last IEP meeting by Zoom. We've been doing these for 19 years and it's hard to believe our work with the local school district is coming to an end with Kellisa.

Kellisa loved going to school, from riding the bus to her classroom to wheeling around Oakmont High School delivering the mail. She loved everyone she came in contact with and they loved her back. Kellisa couldn't wheel anywhere without students and staff yelling, "KK" which was always greeted with smiles and kisses. School was Kellisa's world.

Like millions of other kids, her world changed when she was lowered from her bus on Friday, March 13, 2020. We knew her school was shutting down, but we were hopeful it would only last 3-4 weeks. Little did we know at the time that Kellisa would never return to the place she ruled. Besides missing out on daily activities and missing her friends, Kellisa missed her last dances, prom, and graduation.

She's been going to school since she was 3-years-old and earned the right to have an amazing last year. I know it's more important that we've kept her safe during a global pandemic, but Kellisa has always missed out on so much and as her parents, we've missed out on most of the milestones and joys of being a parent. We have to wonder, "WHY?"

We will be discussing Kellisa's options in the community once she ages out of public school next month on her 22nd birthday. We should have been attending and observing the different programs and jobs available to her to help us make our decisions, but that hasn't been possible. We know there were some amazing programs pre-COVID, but have no idea what they look like now, if anything is even operating.

Kellisa has been doing better than expected locked up at home for more then a year, but we can tell she's going a little stir crazy after spending her first 21 years going at breakneck speeds. We do have some hopes and plans for Kellisa once it's safe for her to venture out, but for now, we endure.

We've been holding out hope for a miracle so Kellisa could return to school at some point. Even though we've known for awhile it wasn't to be, reality is hitting hard as we prepare for one last sit down with Kellisa's school to discuss, "The End". 

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