Becoming a PH Family

September 10,2019

November 11, 2015 would be the first time we would hear the two words that would forever change our lives. Everything we knew about our lives wasn’t as we thought. We would soon be forced to travel a path that we never thought we would have to, nor would we ever want to. Our emotions would go from fear, anger, confusion, shock, heartbreak, pain, love, hope, faith, and even laughter. Tears would often not only be from saddenss, but from pure joy. The path that was paved the day we heard those two words… pulmonary hypertension.

Haylee is warrior

Living with PH is hellish. The symptoms of the disease, the side effects from medications, physical limitations, social awkwardness, daily medical regimen, and emotional battles.

Haylee’s PH is advanced and serve, and she has symptoms daily. Shortness of breath happens everyday, all day. Walking up two stairs, walking from the car to the house, talking, playing, and even just sitting. Her heart races at times so fast it scares her and she tells us she is frightened. Fatigue is a constant battle as sometimes she just falls asleep, and no matter what can’t be woken up. She’s just that exhausted usually for no reason other than PH.

Then there’s the side effects from the medication you must take to keep you alive. Stomach cramps and diarrhea, especially during increases in medication dosage. Leg cramps, headaches, flushing, dizziness, and double vision are all too common.

Physically her body just won’t let her do many things she would love to do. Sports are not an option, and even physical education at school isn’t possible with her PH. Walking isn’t even easy, so a wheelchair is her aid most days. Riding her bike, playing tag, climbing, and swimming; all things most probably take for granted are extreme struggles and impossible most days for Haylee.

Imagine being a child. Trying to fit in is hard enough right? Imagine trying to fit in when you are not like other healthy children your age. You can’t keep up or play the things they want to, and you are often left behind. Having to use a wheelchair with a tube coming out of your chest makes it hard to hide your differences, as well as sitting out of certain classes and having shortened days. Being left on the sidelines at all those birthday parties. Having your parents stay at any events you attend will be noticed, just like your friend throughout the school day.

Every day you have things you must do to stay alive when you live with PH. For Haylee, she has many must-dos, some of which she wishes she never had to do. Multiple oral medications daily are probably the easiest of the routine. The hardest is the weekly bandage changes, monthly blood draws, and yearly trips to the operating room. The shower guards for baths are not her favorite either. Having a tube coming out your chest and wearing a backpack 24/7 seems like it would be aggravating beyond words. As of right now, not to Haylee, but with age I’m sure that may change.

Emotionally the fear is constant and loud almost always. Haylee is young, but old enough to understand PH can and does take lives. She fears the blood draws and IV pokes. She fears the pain of shower guards and bandage changes. She fears the taste of medications and side effects of them. She fears going to the hospital because she knows she’ll have to stay. She fears not being with her regular caretakers because of her disease. She fears line breaks because they bring IVs. She fears heights, sleeping alone, and all things that cause panic because that can lead to PH episodes. She fears not being able to breath and using oxygen as a result. She fears dying and losing her family. She fears always…

Our Light

At the center of this PH storm stands a beautiful, full of life, little girl. Teaching the world many things through her fight for every breath every day. She is loving, strong, funny, caring, funny, brave. She is fighting, living, and not just living life, but loving it. It is her who shows the world no matter what you are facing, you can adapt and do it in a way to enjoy every day.

Beautiful moments have filled our hearts throughout this journey. One moment was the day she faced her fear of putting on a drysuit to once again swim. The proudness in her voice yelling, “I did it! I did it!” followed by smiles as she swam in the pool brought tears streaming down our faces. All of this after a year of never once complaining about being restrained to the top step of the pool while other kids swam. She still found a way to have fun.

This is why she is our inspiration for each day, and our hero.

So many have reached out saying how Haylee has helped push them through a bad day with her smile. Reading this is what made us realize the purpose I couldn’t place when she was just two weeks old.

PHunWalk4Hay

We couldn’t and still will not expect a prognosis of a decade for our little girl. Haylee is a daughter, sister, granddaughter, cousin, niece, and friend to many, and moments are to come that need her presence. Like every child she deserves her dream of, “When I grow up…”

After three years on an aggressive three therapy regimen, our fear has come true. Ger pressures have not improved. These are her only treatment options. She and every fighter needs a cure.

Our fight has become the PHunWalk4Hay, which by the help of many good-hearted people, has been growing and making an impact by spreading awareness and raising funds for research to cure PH. We will not stop our fight until a cure is found. For all those who have lost their fight, those still fighting, and those who will fight, our army must continue to grow in order to take this PH monster down. Please join our fight.

This year’s PHunWalk4Hay is on Saturday, September 21 at 9 a.m.
featuring a one mile fun walk. Activities include face paint, airbrush tattoos, balloon art, lip art, coloring, and photo props. Registration is $25 a person, kids younger than 12 years old are free, as well as PH patients. Start a team, join a team, or sign up individually.

We hope you’ll join our fight to cure PH and give Haylee her dream of, “When I grow up…” While watching a commercial with children ringing a bell Haylee asked me, “Why are they doing that?” I explained that they had defeated cancer so they ring the bell to celebrate. She then asked, “Why haven’t I seen any PH patient doing that?” I told her because PH doesn’t have a cure. She then reminded me that we are working hard for that cure, and one day she would like to ring a bell too. One day I hope we all can watch as Haylee rings that bell.

Story Photos

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