Erin Schoen Marsh
Love Our Kids; Don’t Fix Them (Toledo Parent)
Updated: Apr 16, 2021
Joy Hajjar reveals the journey that put their 10-year-old on the heart transplant list.
Joy Hajjar is a bit of a modern-day Mary Poppins. Children are inexplicably drawn to her beauty, kindness, and cheery disposition. She can transform the most mundane task into a game--often with an accompanying song.
Joy explains that she maintains her joyful exterior for her children. Her oldest daughter, Rose, who is 10, was recently added to the heart transplant list after numerous heart surgeries and years of complications. She explains, “I don’t always stay joyous! I get very very scared. But just like every mom, I can’t just completely break down; our kids are watching and taking their cues from us.”
“I also feel like life hasn’t given me any other option,” Joy continues. “We play the cards we are dealt, and every family has their own struggles...and I try my very hardest to count my blessings. That’s the real secret to joy.”
She jokingly adds, “I’ve heard that car rides without kids and Coldplay playing is a great place to cry your heart out...but I wouldn’t know!”
A Shocking Discovery
Joy’s pregnancy with Rose was easy and uncomplicated. Joy was only given one ultrasound, as she was young and healthy, and she vividly remembers the tech saying, “That little stinker has her hand over her heart!”
If the tech had been able to view Rose’s heart, she would have seen that only 3 of the 4 chambers had developed, a congenital heart defect known as hypoplastic right ventricle. Joy says, “I believe Rose was giving me peace in my pregnancy.”
Since the defect was a surprise upon Rose’s arrival, she was immediately rushed to the PICU and then Ann Arbor for emergency heart surgery. Rose endured three open heart surgeries by two years old.
Joy summarizes, “We believed that once her heart was ‘fixed’ by these surgeries, we could put it all behind us and live a relatively normal and healthy life, which we did for a while. Our other daughters were born--Jasmine and Dahlia--Rose’s interventions were less and less, and she started catching up to the other 4 and 5 year olds and seemed to be doing okay.”
A Heartbreaking Diagnosis
The period of respite was short-lived, unfortunately. At age 5, the results of some routine lab work revealed that Rose’s blood protein levels were very low; her diagnosis was protein-losing enteropathy (PLE).
Joy expounds, “[PLE] is basically a complication of the surgeries she had, and it means that her body doesn't absorb protein, or many other nutrients….They said there were medications and treatments that could possibly help, but everything was just temporary. There is no cure for PLE, and the only way to possibly get rid of it would be a heart transplant.” Almost six years later, Rose’s condition is much worse. “We’ve been through the ringer with this illness,” Joy reveals. “Rose takes 12 pills every morning, 5 every afternoon, and another 10 at bedtime. She has a continuous infusion of meds in her PICC line (a peripherally inserted central catheter in her upper arm that allows for intravenous access), she has had hundreds and hundreds of infusions at the hospital, has spent months admitted to the hospital for illness, and even had a fourth open heart surgery last August, hoping to cure the PLE, [but] that wasn’t the case.”
“The PLE has stunted her growth, has caused masses in her liver, is affecting major organs, and she lives with daily joint and muscle pain. It has taken a major toll on her body and will continue to harm her organs as time goes on. Our doctors feel we have exhausted every option possible, and that the only way of helping Rose is with a heart transplant. On February 6, Rose was listed on the National Donor list. We are still waiting.”
Despite her numerous surgeries and illnesses, Rose maintains her cheery, and humorously sassy, disposition. Joy describes Rose as “very bright--a math and puzzles girl. She loves to be around people, is great at public speaking and can be very tempermental!”
When Joy asked Rose if she could use “tempermental” to describe her, Rose responded, “Yeah, it’s okay. People can know I freak out sometimes.”
Joy and her husband, Elias Hajjar, credit their families as their largest support systems during the many tough times. Joy exclaims, “Our parents and siblings save us on a daily basis. Literally.”
She adds, “We feel lifted up in prayer, always. Sometimes I meet someone for the first time and they tell me, ‘I’ve been praying for your daughter.’ People are so good.”
Elias owns and runs Poco Piatti, recently opening a second location in Sylvania, and he works long hours. Joy says, “I don’t take for granted the luxury I have of being a full-time, stay-at-home mom...fully available to take care of our home life and [have] the flexibility I need for Rose’s care while my husband runs the restaurants.”
Joy reminisces, “When I started dating Elie, my dad said to me, ‘Joy, the restaurant business is a very different way of life.’ I was like, ‘Whatever dad.’ He was so right though! Weekends and holidays have been an adjustment, but I’ve come to learn that when you embrace it, Tuesday nights out aren’t so bad, and the small sacrifices we make are well worth the perks.”
She adds, “The girls are all really interested in the restaurants, and they got to be a big part of opening the new location on Central. Sometimes they go in on a Saturday afternoon to help bake the bread. Elie does a great job of making family time a priority and Sundays become a sacred day for spending time together.”
When life becomes overwhelming, Joy reminds herself that “Our job as parents is to love our kids, not fix them. That gives me some control when I feel like I have none. If loving is the job, I can do that!”
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