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The PHight begins for Haylee

There are things in this life we will never understand. No matter how much soul searching, praying, meditating, chanting, or screaming we do. The way the universe works will always leave us asking, why? We can sit alone in our thoughts for hours, post on social media, or see a therapist, but we will never find the answers we are looking for.

Imagine being three years old and having trouble breathing. Your mom takes you to the doctor many times, but nothing works. Think about what you could have felt? Would you be scared, nervous, brave, excited, hopeful?

Then one day the doctor comes in and tells your family you have Pulmonary Hypertension. PH for short. As these big words fall from the doctor’s mouth, you must have a look of confusion on your face. Not only do you have no clue what he just said, but you also do not know what this means.

The doctor, sensing your fear and confusion, bends down and touches your heart and lungs. He tells you that your heart is having trouble pushing the blood in your body through your lungs. He says they will try to make it better, but they cannot make it go away.

The doctor has you go out and play with your older sister, while he talks to your mommy. You see your sissy and you can tell something is wrong. You go to her and tell her “Don’t worry sissy.” When your mom comes out of the room, she has tears in her eyes.

Now you know something is wrong!

Remember, you are only 3 years old. You have a child’s imagination. You see, the world through other’s eyes. Your environment controls what you do. When those around you show fear, you are afraid. When they are happy, you are happy. Think about all the negative things that could go through your little mind.

Every emotion you are feeling right now are the same ones Haylee should have been feeling.

No, not Hay. She knew right away she had to be strong. She knew she had to fight, just like her favorite player on the St. Louis Blues, Ryan Reaves.

Just one look at this little ball of energy and excitement you knew she was different.

Haylee loved the beach and arts and crafts. Like many little girls, she loved dolls and fairies. She had a dog and a couple of cats that she named and would hold. She was your typical toddler and child.

Ooh, if only that were so. She was so much more than that. Haylee was anything but your typical child. There is a lesson that she learned that most adults today have not. This five-year-old figured out the secret to life.

Hay was a fighter! She had to fight for every breath she took. For four years she fought. She took in each breath and cherished it. She let the life-giving oxygen flow through her. Hay felt every tiny blood cell flow throughout her tiny frame. She was a PHighter and nothing was going to change that.

The Disease

Pulmonary Hypertension normally shows up in adults between the ages of 20-60. In the U.S. there are approximately 1000 new cases each year according to a wiki on PH. Singer-songwriter Natalie Cole passed from this disease in December 2015, just a little over a month after they diagnosed Hay. Pediatric PH is extremely rare. It is incurable and always fatal. Most pediatric PH patients succumb before the age of 20. There are treatments available and they gave the best care to Haylee at Children’s Hospital in St. Louis MO.

While PH is being studied and there is a search for a cure, it is lacking behind the other high-profile diseases like cancer, AIDS, and heart disease. There is much more to be done. The PHight is not over, as Hay would say.

Just who was Haylee?

Who was this child that had the wisdom of brilliant thinkers like Socrates, Einstein, the Buddha, and your grandmother? I bet you just read that last sentence two or three times. Yes, she understood life unlike 99.9% of the population of this planet. She figured out something at the ripe old age of three that I have yet to explore, and I am 52.

Haylee loved so many things. But one of her favorites was St. Louis Blues Hockey. She could not wait to go to a game with her family. The Blues gave her the opportunity to meet her favorite player Ryan Reaves and have lunch with him.

She was a Guarding of the Rink and won an autographed Schenn Jersey. This girl bled as much blue as Bob Plager. She was one of the lucky ones she only had to wait six years to see her beloved Blues raise Lord Stanley’s Prize. She also was able to see some of the greatest players in the league compete in the All-Star Game in St. Louis.

Hay Bled blue, just like her mom and dad. Jess and Joe York, of St. Peters Mo, taught her how to love the Blues, and she taught them how to love life.

Haylee has an older sister, Jordayn, who just graduated from high school. Jordayn is a frequent guest and commenter on the BlueNote Fan Report. She has talked about her ADHD and her anxieties. Most teenagers go through some of what Jordayn deals with. But none of them had a sister with the wisdom of Haylee.

“Sissy,” she would say “You can be a hobo as long as you’re a happy one.”

Hay

Sissy you can be a Hobo as long as you are a happy one

I started high school in 1983, three decades before Hay came into being. One of my Naval Science instructors said the same thing to me all four years I was there. Where did a five-year-old get such wisdom?

“It’s inconceivable” as one villain in “The Princess Bride” would exclaim.

Haylee had it all figured out.

I first met Hay through her father. Joe had one of his tattoos featured on the BlueNote Fan Report. Joe told me about his daughter and her plight. The family kept in contact with me and quickly became fans of mine. Haylee thought the show was funny and, like her sister, she hated my singing.

I followed the Facebook page, “Legacy of Hay“, learning all about this fantastic little girl. The Family told me all about her “Birthday Pranks” and how she loved to smell carpet. This mermaid loved the ocean and being on the breach. She would let nothing stop her.

This little girl knew love. She even had a “boyfriend.” She loved zebras and her tablet. All of her caregivers and anyone who was around her loved her. When I said she had it figured out, I mean it.

By now you are probably wondering what this bundle of joy, love, and energy had figured out? Keep wondering a bit longer. The secret that she discovered is so pure and simple, but so hard to recreate. Just think, she figured it out before the age of four.

The surgeries.

Pulmonary Hypertension or in layperson’s terms, high blood pressure in the lungs, requires a few surgeries to help administer the life-giving medicine needed. Our heroine was old hat at this. She was tough, and she was brave. This girl was on fire. She was stronger than any old disease in her body.

She was as tough as Ryan Reaves, and she would tell him that. This kid was ready for just about anything. She had been under the knife five times. She had a Broviac placement and a repair. A Broviac is a type “of catheter or soft flexible tube, that is placed into a large blood vessel near the center of the body. Central lines are used to give fluids, medications, blood products, nutrition and to draw blood for labs.” according to an Information form from CCOC Children’s Hospital.

Hay’s Broviac was used to give her medicine 24 hours a day straight to her heart. She would receive a new one each year in January or February. The catheter would measure pulmonary pressures to see if they had improved, stayed the same, or gotten worse. These measurements would help determine her treatment plan for each year. Haylee was a champ each time. She was ready for each one. With the courage and strength of a lion’s roar, she faced each trip to the operating room. This amazing little girl was not to be stopped.

The Family had a routine after each surgery. They would let Hay get a doll. At first, it was at Toys-R-Us but after they folded, it was from the Disney Store. Her family would then take her to her favorite place to eat. McDonald’s. The family looked forward to these trips. This was a way to decompress and to let the built-up anxiety and stress melt away. This was their way of saying everything ok. We got this.

February 11th, 2020

Just like most fateful days, this one started out normal. Hay was going to have a heart catheter inserted so the doctors could get measurements to her disease progression. Haylee is 7 years old, and she has CHD (a complete arterial ventricle heart defect) that caused the PH.

There are 14 FDA-approved treatments for adult PH patients but only 1 for pediatric patients. Hay was on the approved one and two unapproved ones. The Doctors felt this was the best course of action to prolong her life. The night before she wanted her Father Joe York to read her a story, so she stayed awake until he came home. Hay fell asleep to the sound of her father’s voice comforting her. Just like billions of little girls around the world.

Haylee and Joe February 11 2020

Anyone who has ever had surgery knows how terrifying and nerve-wracking this can be. Not for this 7-year-old. She greeted all her caretakers and one of them, who was off, came in to give a gift to her. She loved her Doctor, and she always talked to him about what was happening. This kid had it down pat. Nothing was going to stop her. She even had her dad walk her to the staging area. Hay would not be defeated.

Her surgery was supposed to take place around 8 AM. We all know how that goes. I once went in at 8 pm for a knee surgery that happened three weeks later. Remember, she was an old hat at this. It was just something she had to do. Like getting up in the morning or tying your shoes. This was just part of her life, and she accepted it.

Hay and Her Doctor.

Remember, I said she was different. That she understood life on a level most Rhodes Scholars don’t. The more I talked to the family, the more I believed she knew. She had told her sister she did not want to die, but she knew. Haylee was connected to the universe in a way that would baffle most of us. Hey knew what this day was going to bring. She knew that her family would never forget it. Hay made sure their memories were good ones and that they could still smile. She knew.

After the procedure, she was groggy but in good spirits. It was close to 4:30 when she was given the all-clear. To the Disney store she went. This time they were much later than the other time and the family felt we should just go home. Not Hay. This was important. She insisted on going and getting a Moana doll. Every time they asked her she replied “I am OK.”

Next, it was off to Micky D’s and some nuggets. You got to hand it to the French Chef that first tried to make onion nuggets. The Chicken Nugget is one of those little things that have changed our lives. Just like the Cell Phone and the internet, where would we be without them. Nuggets in hand, it was time to go see Grandma and Grandpa. Again Hay insisted this happen.

Jess’s dad is paralyzed, and he had a special relationship with Hay. you can see it in his eyes and hers in every picture they took together. For a seven-year-old nuggets with Grandpa is one of the sweetest things in life. Hay cherished these moments, and so did Jess’s dad. Hay Knew. She knew this moment had to happen.

Hay and Grandpa,

After Leaving Jess’s parents’ house is when the nightmare started.

When I spoke to both Jess and Jordayn about that day, the emotion seeped through the phone from 4400 miles away. While in the car, her lips turned purple and her eyes fluttered. Emergency services were called, and they performed CRP. The first responders would not give up and they did not. Hay’s last words to her mother were “I am OK.”

When Jess told me this, the profoundness of these little girls’ words!!

Jess responded in the interview, “She was not.” Jess, let me tell you, her words were much more than you, me, or anyone else could have realized. She was telling you so much more.

In Buddhism, there is a belief in the four sufferings. “Birth, Aging, Sickness, and Death.” The average life span of a human being is around 72 years. The sufferings that we endure can either strengthen our life force or weaken it. I have known so many people who have succumbed to a disease that complained and said woe-est me every day. Not Haylee.

Hay knew. She knew her family would worry about her. Hay knew that her family would be sad. She knew it was her time to move on.

“I am Ok,”

MOM don’t worry about me. I am going to the right place. DAD, I will be just as strong for you as you have been for me. Sissy, you taught me what it meant to be connected so tight. I will teach that to others. Yes, it is time for my life force to connect with the universe in a way that I will always be here.

Yes, Mom “I am Ok”

The Smartest seven-year-old

Just what was it that this amazing little soul figured out. What is the secret to life that Haylee discovered so young and which so many adults have yet to realize? Better yet, how could a seven-year-old figure this out?

First off, Hay was no ordinary girl. This was a fact her family knew right away. She allowed her life force to penetrate every living being that she had contact with. Hey did not just live one lifetime, she lived countless upon countless lifetimes. You soon come to understand, Hay’s soul was much older than the earth’s crust. It existed when time began and continues to exist.

This bubbly little girl figured it out. She loved unconditionally; she lived every moment as if it were her last. Hay knew fear and embraced it. She understood the pain and excepted it. Hay saw each moment as an opportunity not to be wasted. She allowed her inherent nature to escape and touch all those around her.

She felt with every sense she had. She used her eyes to penetrate deep into your inner being. Hay used her touch to remove your pain. She used the smell of a carpet to let you know to accept the smallest of treasures in life. This little girl tasted life in the very air that is invisible to us, but not to her. She listened to every sound as if she had been a deaf person hearing for the first time. Even before they told her; she knew her time was finite, however; she knew her legacy was not.

 

Hay’s Legacy

So what did this bright spot leave behind for us? She showed us what we can be, and she showed us it only takes one pebble to move a mountain. Haylee wanted us to know that while she might not be here; she is never far away. If you never met her, it is ok. She left us with some pieces and clues for us to gather and cherish.

  1. Join the Facebook Group, Legacy of Hay. This is a group by her family and PH Awareness. The majority of the pictures in this piece are from there. I also used them with permission. The stories you will find, not just in the post but in the pictures, will touch every part of your being. That Is Hay’s, Life Force.
  2. Join the upcoming Virtual meeting about school and PH.  the following is from the Facebook post. “Each year we are so thankful to have the opportunity to host a pediatric-focused Pulmonary Hypertension Support Group meeting. This year will be our 3rd annual and we are so honored to have Rachelle, an important part of Haylee’s school journey, join us to discuss PH and Navigating School. This meeting is virtual and is open to all who would like to join us. As many know, PH can affect all people of all ages and over the years our adult patients who attend our pediatric-focused topics always take away new knowledge. We are all in this together. Please share and contact me directly with any questions. Pulmonary Hypertension Association Legacy of Hay #TheRightHeart #PHunWalk4Hay #PHindingYourHope #PHAssociation #Heart2CurePH” Here is the Link to Join On July 17th at Noon CST.

    https://meetings.ringcentral.com/j/1474231126

  3. Help Make Haylee a YouTuber. Haylee wanted to be a YouTuber, and she even used her dolls to practice. They sent me a video that because of a few rules and regulations I can not show, Hay was a talk-show YouTuber. On August 28, 2021, at Don Brown Chevrolet in St. Louis Mo from 11 AM – 3 PM the BlueNote Fan Report will host a “PH Awareness Day.” We will have a cutout of Haylee along with her family and other surprises being broadcast on our YouTube channel, Facebook Page/Groups, and on Twitter. if you are not in St. Louis join us and help us Make Hay a viral YouTuber for one day.
  4. Join us for PH Awareness Day at Don Brown Chevrolet. If you are in St. Louis, Mo. on August 28th come to 2244 S. KINGSHIGHWAY ST. LOUIS, MO 63110 Phone: (314) 450-7161. The Fan Report Media Group and the St Louis Fan Report in association with Don Brown Chevrolet are hosting a PHight 4 Hay Awareness Day. We plan on having events for the kids, Blues Alumni (If Possible), a Live BlueNote Fan Report, “PHun Walk sign-ups”, and so much more. This is your chance to meet the York Family, and others who are PHighting for Hay. There will be donation buckets available and ways to log in and sign-up or donate to the cause. The Family was looking to raise 15,000 for the PHun run/walk. I want to raise it and more on the 28th of October. we will also be needing Volunteers. Check this link for more information as it becomes available. 
  5. Join the PHun Walk/Run on September 26th 2021 in St. Charles. this is an annual event and it is the first live one held since Haylee’s passing. Get a team, bring the kids, bring the dogs, bring the neighborhood. Let Hay’s understanding of the world and her life force touch us all. Here is your chance to make a difference in someone’s life. If you can’t run or walk be a Volunteer.

Haylee was and is a very special human. She passed on the same day the Blues’ Defenseman Jay Bouwmeester had a cardiac event just two hours after she did. Bouwmeester’s played out on television with his dad in the stands. Haylee’s played out at a stop sign in St. Louis.

Jordayn Told me she felt as if Hay knew Bouwmeester needed to live that day. That she understood what his death would mean. That maybe, just maybe, this 7-year-old girl traded her life for his. Whether or not you believe in that is not the point.

The Simple point is this. Live your life every day as if you will take your last breath because you don’t want to be left to wonder if you did enough in this life. Be like Hay and KNOW YOU DID.

Guy “Hawaii Blues Fan” Bensing

Guy@stlfanreport.com 

@histlbluesfan

@Bluenotereport 

BlueNote Fan Report 

 

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