By: Thomas E. Edmund, Jr., Gateway Regional High School
NATIONAL PARK, N.J. — The global health crisis has created health challenges for all of us, but it is an especially difficult time for those with underlying conditions. Their response to adversity demonstrates their positivity and resilience to work through life’s most daunting obstacles.
Lizann Ward, a proud recipient of two donor kidneys, admits the difficulty of dealing with accepting an organ donation after having suffered kidney failure at age nineteen. “The most difficult part about dealing with accepting an organ donation differed each time,” she says. “The first time I could not admit I was truly sick. I was away at college and I wanted to continue to live the lifestyle as a careless college student. I had no idea about chronic illness and the continued issues; I actually didn’t want to know about it. Eventually I had to come to terms or I would have died, so I finally faced that I was mortal, something most young people don’t do. It left me more aware of dangers and it caused me to become more cautious/afraid of taking chances,” Ward says.
Having gone through the trauma of an organ transplant as a young college student, Ward says that she was worried when it came time for her second kidney transplant. Reflecting on the time, Ward remembers the guilt of her husband being her donor; if something was to go wrong, her children might not have parents.
She expresses that she has learned that some people can be very supportive while others will never understand that some days it is really tough to get out of bed. Ward states how her friends and family have been a great system of continued support, but how they also know when it is time to back off.
“My family too is there but they know when to step in and when to give me space. I have recognized that I could deal with this on my own, but people will be there when I need them,” she says. “I realized during this pandemic that people are seeing what the past 30+ years has been like for me. Always wondering what new strain of some wacky virus I will catch. I am like ‘the boy in the plastic bubble.’ I have not let that stop me. After the first transplant, I went back to college, lived in the dorms, went to grad school, got married, had kids and now expose myself to students and their germs every day as a school psychologist. I also coach swimming and I’m involved in my kids’ activities, when I think about this, the song ‘I’m Still Standing’ comes to mind.”
Ward’s advice to anyone faced with adversity is to embrace the challenges. “Don’t stop even on the days when it is hardest to move, force yourself to go.”
Right now she is facing challenges because of her second transplant, but she is still working and still lives life to its fullest. She can still recall the first time around in the transplant clinic when those around her were talking about being miserable and not being able to go to work, etc. Despite having to have two transplants, Ward mentions she was still able to go to work, go out on dates, plan to return back to college and continue to live her life. Ward knows that life is truly a gift and she will never stop ignoring that life is too precious to take for granted.
Caitlin Sweeney and husband Shane found out at twenty weeks pregnant that their baby girl was going to be born with a unilateral cleft lip and possibly a cleft palate as well. At that time, Sweeney notes that doctors could not be 100% certain of the baby’s condition because the mouth is a very small area of indication on an ultrasound scan. Sweeney acknowledges that emotions such as fear, confusion and sadness were felt in concern for their child’s overall well-being.
“Fortunately, these feelings didn’t stick around too long,” says Sweeney. “We were able to meet our baby’s plastic surgeon within a week of receiving the cleft diagnosis. It was quickly evident that he was truly an expert in working with children with clefts. His before and after photos for lip repair surgery spoke for themselves. We had full confidence in his ability to care for our child and we knew the best thing we could do was to become as knowledgeable as possible about clefts so we could best advocate for our child once she was here. Meeting him and receiving good results from all of the additional testing allowed us to get back to the normal feelings for new parents to be: excitement and love.”
Upon the birth of their daughter, Ivy, the Sweeneys discovered that she was born with a unilateral cleft lip along with a cleft palate, which would call for multiple surgeries in the future, but as Sweeney mentions, “She was beautiful and perfect and we loved her more than anything.” At eight months old, Ivy had her very first surgery which involved a cleft lip repair and the insertion of tubes into her ears, because children born with cleft palates commonly require ear tubes, as they are more susceptible to repeat ear infections. Sweeney still remembers the anxiety of waiting for the results of her daughter’s first surgery.
“We were definitely anxious because we had no knowledge or expectations of how she would handle anesthesia or recovery,” expresses Sweeney. “We were also anxious because, despite knowing that it was medically necessary for her lip repair, the sentimental side of us had fallen in love with our girl’s extra wide smile. We knew the little face that we had loved so hard for eight months would now look different. “When we were finally able to see Ivy after surgery, it was as if she had looked that way all along.” Sweeney cannot speak highly enough of Ivy’s surgeon and the incredible job he did. “Ivy recovered well, and though it was definitely not easy guiding her through her recovery, I am always so proud of her bravery and strength at such a young age,” Sweeney gloats.
Ivy will have to have her cleft palate repair completed next. When she gets older, she will also need a bone graft as her gum line is affected by her cleft. Likewise, she will need dental and orthodontic work in the future as well as continued monitoring of her ear tubes and other potential surgeries. It is still unknown as to whether she will require support from speech or other related services too.
Typically, Ivy’s surgeon aims to do cleft lip repair surgeries from around 4-6 months old. Due to some unforeseen circumstances, Ivy’s lip repair was not completed until around 8 months old. It actually may have been beneficial to have this surgery when she was a little older than normal. Looking back, Sweeney is incredibly thankful that Ivy received her surgery in February when she did. “We were lucky she received this surgery prior to the onset of the effects of COVID 19. We worked hard during what we thought was just the regular flu season to keep her healthy and able to have the surgery completed,” Sweeney asserts.
However, the cleft palate surgery is a little more time sensitive. Typically, this surgery is completed between 11-13 months of age because it assists the child in maintaining normal speech development. Ivy’s cleft palate repair was supposed to be scheduled around mid-summer but due COVID-19, cleft surgeries had to be rescheduled and Sweeney states that she remains unaware of how this cancellation will affect Ivy’s surgery, but maintains that she would not be surprised if the surgery became delayed.
“Life’s most important moments happen when we respond to big challenges,” states Sweeney. “Someday, I hope that Ivy will feel like I responded to this challenge with love, faith and confidence in hopes of creating a bright and beautiful future for her.”
“I think that these experiences with Ivy have led me to realize that, as much as we don’t always like to admit it, some things are beyond our control. I cannot control the possibility of her palate repair being delayed due to COVID-19, just as I couldn’t control it when her lip repair took place a little later than expected. What I can control is my faith in her doctors to continue to provide her with a high quality level of care as well as my faith in them to make informed decisions regarding COVID 19 and when it is safe and appropriate to perform her surgery. Patience is going to be crucial moving forward as medical staff have to navigate a brand new and very complex situation. Personally, the pandemic has reinforced the importance of maintaining strong hygiene habits to keep Ivy healthy and prepared for surgery when it does get scheduled. Additionally, it has reminded me that some of the best things I can do for her are simply advocate for her and to let her know how much she is loved.”
Doug Craft had been experiencing a lot of difficulties with mobility, and when he consulted a doctor in 2011, he was diagnosed with a tumor growing inside of his spinal cord. Surgeons at Thomas Jefferson University Hospital in Philadelphia, PA were able to reduce the size of the tumor and successfully extract 78% of it. Amid many challenges during surgery, both Craft and his doctors had agreed to not finish the surgery.
Craft was discharged to Magee Rehabilitation. After falling and ending up with a broken spinous process in his neck, and a neck brace for quite a while he walked into surgery, but was unable to walk out. “My life was now in a wheelchair – but I wasn’t about to let that define me,” laments Craft.
Upon discharge from Magee Rehabilitation Hospital, Craft states that he was accepted into a comprehensive outpatient physical therapy program. He decided at this point that he would need to be able to live independently and not be dependent on a caretaker. Even though Craft has faced many challenges, he has not let his physical limitations get in the way of his favorite hobbies.
“It took approximately a year, but I was able to get my driver’s license again. I drive with hand controls, and have a special device on the wheel to help me turn. Eventually when I got a truck, I built a crane so that I could lift my chair into the back of the truck. With my license restored to me, I was back to my independence,” says Craft.
With this independence, and the better handle on his living skills, Craft was able to get outside in his backyard and get back to a hobby that he thought he wouldn’t be able to when this first happened. With the help of some of his friends, Craft was able to get the workshop into working order and got back into woodworking — a hobby that he has enjoyed his whole life, and skills acquired from working with his grandfather when he was young.
“There were tools and areas in my shop that I had to modify to suit my new abilities, and that went for the whole yard. I was an avid gardener, as I had worked as a landscaper in my past and I haven’t had to make modifications on how to do this. I now work with pots and raised flower beds, instead of planting into the ground,” comments Craft.
From a very young age, Craft says that his spiritual faith has been a large part of his life. “Faith has been a large part of my life, my whole life. I had gone to church growing up, and continued into adulthood. This helped me with the negative thoughts that plagued me throughout this process. I knew that deep down, I wasn’t alone through all this. I clung to that faith when I could only think about never walking again. I was encouraged by my faith to keep making goals for myself, and I have been able to attain several of these goals in nearly the past eight years. I grieved for what I had lost, when it was time, I knew that I needed to start living my new life, not mourning my past life,” he adds.
While still in rehab, Craft responds that he had a few moments of depression and anger, asking, “Why me?” although when his former pastor visited him that same day, the question was no longer “Why me?’’ but now “Why not you? Do you think you’re special?’’ Looking back, Craft is reminded that something bad may have happened, but he does not need special treatment in order to be successful.
Craft hopes that his story can inspire anyone who reads it. In regards to the COVID-19 pandemic, Craft says that there have not been too many changes to his daily routine: he cannot go to church or volunteer at a local food bank. He realizes that his grandmother, whom he cares for is sensitive during this time and cannot allow visitors to their house, but continues his favorite past-time of wood-working while unable to attend craft shows.
Thomas E. Edmund, Jr., “TJ”, is a senior at Gateway Regional High School in Woodbury Heights, NJ and an intern at SNJToday.com. After graduation, he will be attending Rowan College of Southern New Jersey to begin his quest to become a journalist.