Friday, April 16, 2021

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!

Back to Kellisa's Path Blog


Wednesday, April 7, 2021

"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". 


Monday, January 4, 2021

A New Christmas Tradition?

We don't have many traditions in our family, but most of the few we do have happen at Christmas time. We often travel on other holidays and are rarely home for Easter and Thanksgiving, but we are always at home for Christmas. Lisa makes a traditional meal, the girls wear new dresses, and we visit the tree on display in the downtown area wherever we live. As far as trees, Lisa and I didn't put one up before kids. We lost Everett on December 7th and Christmas was a rough time for us. When Kellisa was born, my dad wanted to make sure she had a tree at home and bought us a small fiber optic tree which we used every year until it died. We did replace it to keep the tradition going...guess we have another one.

When Kellisa was 4 years old, we purchased an artificial tree that we used every year, but we threw it out when we moved to California. Instead of buying another artificial tree and storing it all year in our limited space, we decided to purchase real trees. For some reason, we always wait until the weekend before Christmas to pick a tree from a mostly empty lot near our house. We are always shocked at the high prices and Lisa is usually able to negotiate $20 - $40 off a $200 tree since it's so close to Christmas.

Egypt was asking to get a tree earlier this year and I somehow read an article about the national forests in Northern California offering permits for only $10 to cut your own tree. I did a little research and found the closest to our house, Tahoe National Forest was included. The idea is to thin the forest to help lower wildfire dangers while also allowing more mature trees thrive. I got a permit and a map of areas where harvesting live Christmas trees was allowed. I picked an area I was familiar with about an hour from our driveway.

I was hoping it would be a family outing, but Lisa stayed home with Kellisa as she was still recovering from her surgery. After purchasing a small chainsaw, Egypt and I headed out to the forest. As we gained elevation, the temperature dropped and patches of snow decorated the forest floor. We enjoyed some spectacular views before Egypt saw the perfect tree a short distance off the dirt road we were driving down. 



We got out and walked over to the tree and Egypt had already made up her mind. I could see at least 6 other trees that were just as perfect. Our permit limited us to trees less than 20ft. tall and trunk diameters of no more than 6 inches. I asked Egypt to at least look and consider the other trees. To her credit, she humored me and checked each tree out. Egypt was adamant about her first choice still being the best. I couldn't help but agree.

I went back and got the chainsaw as Egypt walked Evie. We posed for a few pictures before Egypt helped me cut down our first ever Christmas tree from the wild. I dragged it back and tied it down before driving back home. 

I had visions of clipping the tree once it was home to make it the perfect Christmas tree shape, but we decided to leave it natural even though it was a little uneven and stuck out in our main walkway from the front door to the kitchen, living room, and Kellisa's bedroom. 

Our tree was perfect and we started talking about "next year" and doing it again before we even decorated this tree. 






Saturday, December 19, 2020

Surgery #23

Sutter Health Roseville
December 2020

Lisa noticed Kellisa's left breast was swollen to 3-4 times its normal size one night while changing her shirt at bedtime. Since we help Kellisa get dressed and shower, this increase in size happened literally overnight. It was too late to do anything and ERs are too scary in the middle of a COVID-19 surge. Of course we were worried about breast cancer and I couldn't help but do some Internet searches. I found several logical explanations, I also found a rare type of beast cancer that seems to aggressively grow out of nowhere. Lisa called Kellisa's doctor first thing in the morning and Kellisa's awesome doctor saw her right away.

The doctor thought it was just fluid built up in the areas where breast milk would be stored. She was confident that a duct got pinched and closed the area. This made sense because Kellisa has a natural lean to her left side and never seems to get tired or uncomfortable in that position. In her wheelchair, her left chest area leans up against the metal arm and in bed when she props up on her left arm, her breast could become pinched between her bed and elbow.

I can't describe how relieved I was at the diagnosis and the cure was 10 days of antibiotics and warm compresses.

Several days went by and we didn't see any improvement. We talked to her doctor who became very concerned and ordered an ultrasound. I had to bring Egypt with to the ultrasound because Lisa was at work. I prepared Egypt to be left alone in the lobby area, but to my surprise, the ultrasound lady invited her back and Egypt gladly accepted.

My nerves and anxiety took a blow when the technician started asking about breast cancer in Kellisa's family. She didn't ask about pinched duct history, so while she left and we were waiting for the radiologist, I was preparing for the worst and wishing Egypt wasn't in the room with us. I wanted to control how she heard devastating news about her sister and wanted Lisa there, but there was nothing I could do but wait and deal with it.

Notice Egypt's hand getting ready to get too close to the ultrasound machine.

It seemed like hours before the radiologist entered. I was hoping for a smile or something to relieve my worry as she entered, but her face was like stone. Before she explained anything, she pulled up images on the screen. I forced myself not to look during the ultrasound. I learned many years ago to resist those temptations because I don't know what I'm looking at and it will always look bad when you are fearing the worst.

As the image came up, I could see several large black spots. I feared cancer and was waiting for the diagnosis. I was also trying to keep my composure for the benefit of both Kellisa and Egypt.

"See these black areas?" the radiologist asked.

"Yes," was my trembling response.

"It's fluid built up from a pinched duct." The diagnosis we wanted to hear!

I'm pretty sure she gave me the medical term, but I was too busy having 13 tons of bricks removed from my shoulders. I started to cry because the dreaded C word wasn't part of that sentence. My relief didn't last long.

"It's a significant amount and she needs emergency surgery."

What? 

We were sent home and told to wait for a call with instructions. The radiologist said it might be several days because the hospital is overloaded as they struggle with the COVID-19 surge.

Shortly after arriving home, Kellisa's doctor called and told us to go to the hospital and check-in through the main entrance. It was determined surgery was necessary as soon as possible. Besides the risk of many sick and potentially COVID positive patients in the ER, the wait just to be seen was hours long. Kellisa's awesome doctor pulled strings so Kellisa could avoid the ER and we were thankful.

Lisa rushed home from work to be with Kellisa. I had a small bag packed and 30 minutes later we were settling in a private room on the peds floor, far from the COVID-19 units. Kellisa and I had to wear masks when anyone else was in the room. It was a constant and steady flurry of activity, so the masks remained mostly on our faces. 

Kellisa loved all the attention, even if it was blood draws, blood pressure tests, IV starts, etc. This was around the 10th time Kellisa left the house since mid-March and was by far the closest she was to people not named, mom, dad, and Egypt. 

It wasn't until after a consultation by the surgeon that I realized how serious Kellisa's situation was inside her left breast area. Besides being filled with fluid, they were worried about truly nasty infections that were spreading to other parts of her body. The nurse checking her in noticed her left leg was red and warmer then her right. The surgeon told us they would take her to surgery as soon as she was fully admitted. I heard the surgeon call several times for updates after he left.

Everything was happening fast and Kellisa was a champ like always. Things settled down for a minute and I removed our masks. I left Kellisa's in her bed. As she heard a knock on the door, she immediately picked it up and started pointing to her face and yelling "Me". She gets it!



It was the surgeon and he was ready. To my surprise, he started wheeling Kellisa out of the room towards surgery. Along the way, he picked up two nurses to help transport Kellisa's bed and her IV machine. I would later learn that the transport team at the hospital was overworked due to the surge and it could take hours for them to arrive to move a patient and the surgery couldn't wait.

We were in a holding area as another nurse went through more pre-surgery checks. I talked to the anesthesiologist who was interested in Kellisa's previous surgeries and want a strict accounting of everything she ate and exactly when in the last 24 hours. I also talked to the nurse who would be there during the surgery. She did her best to explain how things happen and I tried to listen attentively, but this was Kellisa's 23rd surgery and if you could Everett and Egypt, this was the 26th time I was hearing how the process goes down.


This was the first time I watched alone as my child was wheeled off to surgery. Lisa had been there with me the previous 25 times. It was difficult to suck it up to kiss Kellisa, tell her I loved her, and confidently tell her, "I'll see you soon!" 

After Kellisa disappeared around a corner, I was led to a large waiting area that was empty because it was around 8pm. I asked if I could get something from a vending machine because I hadn't eaten or really even drink anything on this whirlwind day. I was devastated to hear I couldn't leave the area due to new COVID-19 restrictions.

The difficult time of waiting was made far more difficult because I was not only alone, but I was worried about how Lisa and Egypt were doing at home so far away from Kellisa even though our house is probably less than a mile away as the crow flies. I know from past surgery to not ask how long it will take and I do not watch the clock. I resist those urges at all costs for my mental well being.

I can only guess, but it was probably between 60 and 90 minutes before the surgeon found me. He didn't waste time and started by saying, "She did great and the surgery went well."

He went on to explain that he removed approximately 12 ounces of fluid and samples were taken to determine the exact type of infection so they could use the best antibiotics to attack it. He also explained we would be there for 2-3 nights and that he left the incision open to continue draining. We would go home with it open and it would close by itself.

What?

It wasn't long before I was escorted to recovery to be reunited with Kellisa. While I waited, I sent Lisa text messages with the update. Kellisa was waking up when I entered her area and she was not happy. Her looks could have killed a dozen grown men. Once the nurse was confident her vitals were stable, Kellisa was free to return to her room. Once again, they didn't want to wait for hours for transport, so two nurses wheeled Kellisa back to her room.


By the time we arrived back in her room, Kellisa was starting to laugh a little and almost giggle as the nurses struggled with her bed. They even bumped it a few times which was alright with Kellisa. I was waiting on the other side of her room as the nurses were doing their thing. I noticed a meal tray in the room and hoped I could eat it for dinner. I knew I was stuck in the room until at least the morning and I was struggling at this point and needed fluids more than food. 



After a few minutes, the nurse told me the meal tray was for me. She explained that they wanted to take it away, but she asked them to leave it because she knew I was in a bad situation between when we arrived and how I'd been on the go the entire time while planning to spend the night. It was the best hospital food I've ever had and shortly after finishing, Kellisa and I settled in for a long night as nurses would be coming and going as they kept close watch during the first hours after surgery.

Kellisa would spend two nights in the hospital and we went home last on a Saturday night. I stayed the entire time with Kellisa and the hours passed slowly, but we enjoyed watching many movies. Kellisa liked watching Happy Feet and my favorite was Daddy's Home 2. It was just easier for Lisa to stay home with Egypt since they couldn't visit due to new hospital policies. Since Kellisa is 21, strings had to be pulled to allow me to stay. Kellisa was excited to go home and see mom and her sister. She was also excited to get a new reclining leather chair for in her room. We are hoping it will be a comfortable way for Kellisa to spend time in her room and lower the risk of pinching off her ducts.

Ice cream is the best medicine!


Watching Happy Feet.



Home!





Wednesday, October 28, 2020

www.ChristopherKain.com

My first book, Rugged Access for All is being released today, October 28, 2020. To go along with this huge event, I'm also going live with my author's website. I've written my first blog post capturing some of the moments that led to writing a book. 

Kellisa's Path Blog will still be our main platform for sharing our stories, but I needed a page for people to hopefully find the book and me as an "author". 

Please check out the new page and sign up for updates. Thank you!

Here's the link to the first post: http://www.christopherkain.com/2020/10/a-long-path.html