I’m Aware That I’m Rare: Jessica York (402)

The phaware® interview

In this episode, pediatric PH care partner, Jessica York, discusses the legacy of her daughter Haylee on the 3rd anniversary of her passing.

You can participate in Hay’s 3rd Heaven Day Saturday Feb 11, 2021. Details here. You can also follow the Legacy of Hay page on facebook.

My name is Jessica York. I have a daughter, Haylee, who was diagnosed with PH at three-and-a-half years old on, that and a heart defect. She passed away at seven and a half from PH. We are continuing to work with Team Phenomenal Hope and PH to bring awareness and keep Haylee’s memory alive through that. Today, I just want to talk about what has happened with me and my family since the loss of Haylee three years ago in February.

Everything is just clouded by sadness now because there should always be Haylee there. I think a lot of people don’t talk about the ripple effects of loss. Everybody’s ripple effects are different depending on who you lost or what age they were. But for us, Haylee was only seven. Her sister, Jordayn’s nine years older than her, but her and Jordayn were super close. We missed all those little kid things. Jordayn graduated I guess the year after Haylee passed, so it’s like we miss out on the field trips, the parties at school, the trick-or-treats, Santa Claus, Easter Bunny, Tooth Fairy, all those things. I wasn’t really prepared for that I guess, because we only have two kids and Haylee was the youngest. I definitely feel robbed of that part of life.

The thing that has really kept us going is keeping Haylee present in our todays. We’ve really made it a priority. We say that Haylee wrote a legacy of love, so we’ve made it a priority to continue her legacy by honoring her, just making sure to keep her present in our days because we couldn’t go on if Haylee wasn’t in our life. It’s not an option just to put her to the side, stop thinking about her and just move on with life. We’re just going to continue to carry her through with us. That’s what’s really helped in making new traditions and just make sure every day she’s included.

We go to visit her quite often, once a month we’ll go visit her. We call her resting plays her fairyland. We really try to make it a fun place to go, rather than a place to mourn her, a place to love her. We’ve had Santa Claus come there to visit. We do Easter egg hunts with her cousins there. For her birthday, we had a snowball fight last year. Her birthday’s in July, but we got snowballs from the snow shop and we did a snowball fight. That’s really helped. The place where she passed away, on the street, I make a cross every month with a different theme and we put that out there every month.

Last year we did, and we’re going to do it again this year, Seven Runs for Hay. We chose to do seven different charities that touched our lives personally and we do those runs to bring awareness to those charities as well as bring awareness and raise funds for Team Phenomenal Hope. We’ve been doing that.

We have a cutout of Haylee, a life size cutout, and we’ve taken that everywhere with us, even to the beach, and we get pictures with her with that. We’ve really enjoyed doing that. We’ve had people write her name in the sand across the world. Every time someone sends a picture that just brightens our day because we know that Haylee’s being remembered and not forgotten, and that’s huge for us.

February 11th, we’re coming up on her third angel anniversary. On that day, we’ve done it the past couple years, but we’ll do a balloon release at her fairyland, as we call it. Then everybody goes to one of her favorite places, which is Chuck E. Cheese. We eat pizza and play games. Then at the time that she passed away, the initial time that my husband Joe made the 911 call, which was 7:00, we walk to her cross, which is right up the street from our parents’ house. We do a glow walk, where we have glow sticks and different flashing lights and stuff like that. We just like to put a little bit of Haylee’s spunk to everything.

For me, every day is horrible, but I have noticed that these last couple weeks and the weeks leading up to the day she passed away, I feel more anxious. I can feel it because I will start falling asleep, I can’t stay awake. I can feel the anxiety building to that day. Of course, we think about that day all the time and we talk about it all the time, even when it’s not nearing, but in the weeks coming, it definitely is a buildup of reliving the anxiety that I felt those weeks too. Back when this was happening, when she was going to have her heart catheterization, I just didn’t feel right that time. I felt so much more scared and anxious. I just felt like something bad was going to happen. You have those thoughts even though logically you know there’s nothing you could have done, but you still feel like you let them down and maybe I should have done something different and maybe she would still be here. Those thoughts come up too, I think, more than throughout the year, but it’s definitely always there.

I know for Joe, he actually was set to start a new job the week after she passed, so they pushed back his start date for him. His job was a fresh start in a way because he hadn’t worked there previously from Haylee passing. For him now, he pretty much just works himself to death. He works there, he works on the weekends, he’s just constantly working because it helps him keep his mind off of it.

For me, going back to work, I worked at a pediatrician office, it was very hard for me because I was seeing kids all day. I was seeing her date of birth all day at work. I initially went back, and she passed away February of 2020, so right after pretty much the pandemic hit, which really intensified a lot of things for us. I actually ended up taking a couple more weeks off and just my mom came over and we did some painting and stuff in the house. But for us, I think COVID happening right after was fairly difficult because you couldn’t have the same outlets you normally have. Hockey, watching Blues games and going to Blues games was a huge outlet for us, but that got taken away for a period of time because of COVID. That what made it very difficult as well.

I think for us it’s just been making those traditions, but keeping her in those traditions. If we go to the beach, that was Haylee’s favorite place. Ironically, that’s where we feel most at peace, I know I say that for myself, Joe and Jordayn. It’s just something about being there puts us at such peace and makes us feel more connected with her. We can write her name in the sand and we can take the cutout and we can get family pictures so she can still be a part of it.

But for me too, and I think Jordayn as well, it’s having my niece and nephew. They’re nine and 12 and they were really close to Haylee and we did a lot of things, having them for me has been a huge help. I don’t know how I would have honestly been able to do it without still having them to do things with, because we did craft days with Haylee. Once a month they would stay the night and we would do our craft days. The first few times we did that, it was really hard on especially Jordan and Leo, who was her youngest cousin. They would have outbursts and cry, but each time we’ve done it’s gotten better and better. We usually make something for Haylee while we’re doing the crafts and just still try to incorporate her. She always comes up, of course, the whole time we’re doing it.

For myself, and I think for our family, we were stuck with hearing the prognosis that the doctor gave us when she was first diagnosed. I kept having it stuck in my head, a decade, a decade, a decade, she’s going to live a decade. She would’ve been 10 this past birthday, so I really thought we wouldn’t lose her until at least 10. I could feel more anxious and more anxiety coming up the closer she got to 10. But also, with the encouragement of our doctor, we really tried to make the most of her life because we always knew and felt like she was not going to have a full life. He was pretty honest with telling us that. We tried to make the best of every day and just do as much with her as possible.

She was so joyful. Haylee was just the sweetest, kindest person. She always wanted everybody to be happy. Haylee was always trying to make sure you weren’t sad, so it was hard to be sad around her because she was just so joyful. But I definitely always had fear, fear of losing her, when it was going to happen, how it was going to happen, but I definitely wasn’t expecting it to happen as soon as it did because I was stuck on just feeling like those 10 years, well, we have to figure out something that’s going to help her before that 10 years gets up. That was constantly the timeline, I guess, was the most fearful for me, the closer we got to that point.

For me, it was like when she first was diagnosed the losses happened from afar. It was like somebody that you were friends with on Facebook, but they were friends with them so you didn’t even know them. Then it just kept moving closer and closer in. Then we lost Candy when she was here for the PH walk, that we were really close to. Then when Madison passed away it was devastating to me. That’s when my fear really grew, because Haylee’s heart death was just a few weeks after hers. I just had a horrible feeling. Then after Haylee passed, Hazel passed and she was only two-and-a-half years old, I think. It’s just continuing to watch all these people that you’ve come to build a friendship with, even if it’s been over Facebook. It’s just like you have to watch them one by one just pass away from this horrible disease. You can keep trying to find a cure, but you just know that that’s going to be the end result.

My advice is just keep them present. That’s the biggest advice I can give. Make traditions, those help so much for us. Any way you can include them in current traditions or make new traditions. You don’t want them to be forgotten. There’s ways to carry them forward each and every day and years to come. You just have to find what will work best for your family. We’ve done a lot of them, we have a lot of them, we’re continuing to grow new ones, but I just think that that’s personally what’s helped us best, is making sure she’s not forgotten and left in our past so we can keep continuing forward with her.

My name is Jessica York and I’m aware that my daughter, Haylee, was rare.

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