MEET THE HARDSHIP HEROES TEAM
The Faces of Hardship Heroes
Director of Communications
Committee Volunteer Leader
About Hardship Heroes Founder
Since childhood I have been no stranger to heartache. At a young age I found myself lost and confused as I was informed I was once a twin in utero. This set me on a path of questioning, heartache and grief. Teenage years were tough on me as I suffered severe social anxiety and depression. The last two years of high school were spent on medical homebound as I endured incredibly challenging mental health issues. Unfortunately these issues did not subside and I graduated high school through homebound instruction. During this time of mental distress, I found myself trying to find some normalcy in everyday life. I found a job and tried my best to continue everyday life, no matter how hard it was to wake up and get out of bed. It was during that time that my life took an even more challenging turn. I became pregnant with my first child as a senior in high school. With my parents support, I was able to have my son Kyler and continue to work on my mental health journey as a single parent. My mental state continued to be a daily challenge and changed the trajectory of my life many times. While carrying the load of being the sole parent for Kyler, as well as the struggle of my own mental state, I had more work ahead of me as Kyler would be diagnosed on the autism spectrum. Back 16 years ago autism awareness wasn't what it is today and finding support and services was a challenge even for the average person, let alone someone suffering severe mental health issues. Determination and perseverance, along with parental support I got Kyler everything he needed, therapies, IEP's and much more.
Fast forward, through struggles and challenges I meet my husband Josh. I become a stepmother to Josh's son Connor and everything feels right with the world, even if just for a brief moment. Josh and I decide to have a child of our own, a baby girl named Lennon. Lennon was a perfect beautiful baby girl! However it didn't take long for the medical issues to start rolling in. Day 1 in the hospital Lennon was taken for an ultrasound of her abdomen. We were told because of her ear tag they wanted to check on her organs as kidneys develop the same time in utero as the ears. Results came in showing septated uterus and an extra renal artery. Nothing super major. After 5 days of having a newborn and 3 days being home from the hospital, I received a phone call at 8pm on a Friday from the Pennsylvania Department of Health telling us that we need to go to the emergency room immediately. Her newborn screen came back abnormal and her TSH was in the 400s! A normal TSH should be as low as 2! We rushed to the emergency room incredibly confused and leaving with an insane amount of information. We started medication immediately. We were reassured that this is incredibly controlled through medication. We were told she has an underdeveloped thyroid and that one pill a day and lots of lab work will be in her future. We do our best to process and get through the weekend. On Monday I receive a call from Lennon's pediatrician asking me if I can come in for a weight check. At the time I thought nothing of it. Looking back I actually did think it was strange, we already had a scheduled appointment later on but I thought maybe this new illness the routine schedule may have changed. Had I known the information given to me would have been hard to hear I would have had my husband with me. But it was that day that I found out Lennon not only was diagnosed with Congenital Hypothyroidism through the newborn screen but also Cystic Fibrosis. Since that day our life has been a whirlwind of doctors appointments and stress, when there is one there is the other. Stress is no longer an option at this point, it's a part of this new game that we didn't sign up for. Lennon's newborn days were spent under high amounts of stress as she was diagnosed failure to thrive. Feedings were done by set alarms every two hours. It was at this time we were butting heads with her CF team. The dietician was forever changing her formula and I wasn't so sure that was the problem. Turns out I followed my instincts. We changed CF teams and I went on my way trying to find a doctor who would listen to me about a possible tongue tie. I was sure this was the reason for her failure to thrive. Sure enough 3 doctors later and lots of begging I found a doctor willing to clip her tongue tie. I was shot down on multiple occasions because Lennon was bottle fed. Many doctors believe bottle fed babies do not struggle with feeding when they have a tongue tie. I was persistent. I begged and pleaded. One week after her tongue tie clip she gained 2 lbs! As one hurdle was jumped and just as we feel we are getting into a rhythm on this new lifestyle, another curve ball is thrown our way! In 2019, at age 3 Lennon is then diagnosed with Congenital Scoliosis through a routine lung x ray. We add MORE doctors and appointments to our never ending list.
While going through the grieving process of multiple diagnoses, the pandemic starts, which was an entirely new form of stress and anxiety for a family of a chronically ill loved one. The pandemic journey has not been an easy one. Early 2022 we decided to open up our bubble as a family, we attend all of our annual doctors appointments and make sure we keep up with our health screenings as a family. During a routine visit to the dentist I asked the same questions I had asked them years prior at all of Lennon's dental appointments. I asked about the shape of her teeth as they are incredibly pointed, I asked about the spaces in her teeth as they are clear as day there, I repeated myself multiple times and the dentist finally decided to do more x rays than she originally had planned. Little did I know that day we would be walking away with yet another diagnosis. We found out that Lennon is missing all of her bottom adult teeth, as well as 2 adult teeth on top. This is associated with a genetic disorder called Ectodermal Dysplasia. Something that I asked the dentist about when she was 2 years old! Lennon will now endure extensive dental work throughout her life. I know, it's a lot. If it reads like a lot, believe me it feels like it too! But here we are. Still standing. Still fighting and still loving!
As I have stated earlier I am no stranger to heartache. I share my story to encourage others who may be suffering, to share their story as well. We as humans are more alike than we are different. We all suffer. My goal is to share the strength and courage of the remarkable people who suffer hardships every single day, some privately, some openly. Either way I hope to give those people a small piece of happiness, because I know how hard it can be to fight through challenges and adversity. Feeling sad and alone is a common feeling for those suffering hardships, we want to make Hardship Heroes a catalyst for positivity and give people a reason to smile even through the smallest of gestures. The idea for Hardship Heroes came to me from someone I have known as an acquaintance for 10 years. As I said we opened our bubble up early 2022, one of the first places I took Lennon to was an antique store I used to sell at. The owner Deb was so thrilled to see Lennon out and about living life, that she gifted her two fabric items to tie dye as she saw how much Lennon loved crafting. It was a small gesture but at that moment Lennon was seen. She felt special and couldn't wait to get home to show her dad. I hope to give that same feeling to our Hardship Heroes clients. Thank you Deb for always following our story, putting a smile on a little girl's face and for helping me see a true purpose in my life, Hardship Heroes!
Photo credit Jill Katherine Photography