Hospital Land: Valerie's Jacket

I must admit when I am working on paintings for The Walking Gallery I am usually listening the NPR at the same time.  Yesterday, I laughed aloud during “Wait, Wait Don’t Tell Me.”  The entire radio team was disparaging the game Candy Land and warning listeners about its seemingly endless path.

I laughed aloud because I worked at the toy store Barstons Child’s Play for 12 years.  Every year new parents would search upon our shelves.  Daily we would show them the classics they requested, like Monopoly, Trouble and Candy Land.  After showing them these choices, we would guide them to other games.  We would show them quirky card games, Euro games and family social games.   As the customer would hesitate between the classics and the elaborate choices in the modern games of today, we would ask, “Have you played any of those games recently?  It seems like a lot of those games have no end in sight.”

At this point in the conversation another seasoned parent would often add his or her own comment.  “ Oh, you don’t want to get that game Candy Land it goes on and on.  But if you buy it anyway make sure you stack the deck with doubles so you can quickly get to the candy castle.”

But sometimes in life and play the deck is stacked against you.  And you might not know this about Candy Land, but it was designed by someone recovering from polio.  She wanted a game appropriate for sick children.

This is Valerie’s jacket:  Hospital Land.  This is about a Valarie’s life as parent and chronic caregiver.  This about a child named Justin who cannot speak and has suffered through thousands of seizures in his short life.  This is about the endless game they have played for years.

Valarie Barnes works as a concierge at the 24-hour front desk in my Apartment Building.  My building is an Archstone Smith property. The front desk staff dresses in nice black blazer or jackets.  They are very kind and considerate.  They place a coffee service in our lobby every day of the workweek and often make fresh baked cookies.  They patiently answer the same repetitive questions. Each day they log our UPS packages and send us emails to remind us to pick up those packages.

They work very hard and in the spring of 2009, our family tragedy made their job harder.  When Fred was hospitalized, large numbers of the Chevy Chase community offered to help by providing cooked meals and groceries.  Two of the customers from the toy store who had become my friends offered to organize the outpouring of assistance.  Those wonderful ladies were Janet Zwick and Chris Berg, they created a page on Lotsa Helping Hands.  That site helps coordinate the help of large groups during tragedies like ours.  Everyday some one would drop a home cooked meal to our front desk.  Once a week someone would drop a week worth of groceries at our front desk.  The staff would rearrange the contents of their fridge to accommodate the many bags.  They did this politely without complaint and would wait for my return from the hospital.  I after I would get home late at night.  I would re-heat the meals and make a plate for my mother-in-law Joan, my two sons.  And as a thank you I would fill another dish for who ever was working the front desk. 

I would thank the staff again for their kind assistance and they would ask after Mr. Holliday.  And I would tell them of the frustrations we were dealing with.  Through all of these conversations, I met Valerie.  As I shared my dismay at the poor care my husband was receiving.  She told me about their medical journey and about her son Justin.

Valarie said “Justin has a illness called Tuberous Sclerosis, he has tumors all over his body, from his brain to his feet and everywhere in between, he is a non verbal child, who can do nothing for himself and requires 24hr. supervision, so on that day, Nov. 15 1986, when he was 3-months old, our world can crashing down, but through the grace of god we were able to dig ourselves out and make an attempt at living what is now our normal live. (A normal live that has included 3 brain surgeries, sometimes 100's of seizures a day, and lets not forget between all that, the constant fighting with doctors, insurance company’s and the school system)  Which for me means being everything Justin needs, from his eyes, to see for him, his ears to hear for him and his mouth to speak for him.  That is why I so strongly believe in family centered cared, for if I am not there to speak for him who will, I want to always make sure each and every parent is involved as much as they would like to be in the care and treatment of their child.  I don't won't anyone making decisions for Justin, without someone who knows Justin, there to have his best interest in front. When doctors and nurses and families work together to come up with medical treatments for the patient, the whole team does better. When a patient knows their family members are allowed to stay and care for them and be by their sides through all phases of their illness, and have input in their medical treatment, the patient does better.  When family members are allowed to be with their loved ones and know that they are being taken care of, and feel they are respected and valued as a equal part of the team, and their opinions will be heard and will be taken into consideration in planning the medical treatment, and they all have one goal in mind taking care of the patient, families members do better.”

And in the spring of 2009, our medical story affected Justin’s path in Hospital Land. 

Each day I would tell Valarie about our spiraling downward care in the hospital.  Frequently I would tell her not seek care at the hospital Fred was admitted to. If somehow they ended up there make sure an advocate was present.   Within days Valarie received a phone call from the care facility that was watching him.  He had been left alone in a room and when the caregiver returned he was unresponsive and not breathing well.  They called 911 and sent Justin to the nearest hospital.  It was Fred’s hospital.  Valerie immediately called her husband at work and told him to drop everything and drive to the hospital.  When he arrived, Justin was still unable to breath well and his pulsox was very low.  A nurse was standing in the hall way and two Doctors were conferring about the case.  Justin’s father asked them, “What was wrong?”  The doctors told him that they were thinking of sending him down to x-ray to check for an obstruction.  The Father asked, “ Have you looked in his throat?  Then Justin’s Dad strode over to the gurney and forced open Justin’s mouth.  He reached into Justin’s throat and pulled out a therapy glove. 

The doctors chuckled and one said, “I guess you did our job for us.”  Soon Justin’s Father arranged transfer to another hospital for Justin’s recovery from oxygen deprivation and an infection stemming from the lodged glove.

I often speak at medical conferences and attendees ask me, “Do you think sharing Fred’s story can save lives?”  I say, “Yes, I do.   I already know of one life saved.”  But I was only there for Valerie one time.  Valerie has saved Justin’s life time and time again.  She is a chronic caregiver to a very compromised patient.  She is playing a game of Hospital Land that has lasted 25 years.  Often she does her work with the name tag "Guest," emblazoned on her chest.  Her title should be caregiver- not guest, she should be considered a valuable part of the medical team.

I am glad I was able to paint this jacket for Valerie. I am glad for all the jackets that have been arriving from all around the country. I am glad to daily talk to the folks at the front desk as I pick up all my packages.  It reminds me of another time,  when I would come home tired and pick up the meals provided by kind neighbors and talk to the caring folks at the front desk.

Thank you to all the front desk staff for helping make the Walking Gallery possible.

Thank you Valerie for joining your walk with mine.