Parents of children inevitably find themselves discussing the topic of Heaven with their little one at some point. Oftentimes these conversations are sweet, and spring from an innocent curiosity about death. Other times they can be difficult, following more tragic circumstances, such as the loss of a family member or a pet. But Michelle and Steve found themselves in the midst of this discussion with their young daughter, Julianna, for the most heartbreaking reason of all. The dying girl chooses Heaven over going back to the hospital when her condition took a turn for the worst.
Little Julianna suffered from Charcot-Marie-Tooth (CMT), a severe neuromuscular disease that would eventually kill her and for which there is no cure. Her muscles grew continually weaker. She could no longer walk or hold toys or even chew.
The disease causes respiratory failure, so that even the smallest cold turned into a full-blown case of pneumonia for Julianna. The disease caused her to spend most of her fourth year of life in the hospital, where she spent weeks at a time struggling to just breathe.
It was around this time that Michelle started sharing Julianna's journey by way of a blog. Along with updates on Julianna’s health battle, Michelle also shares some of the touching conversations they have had as a result. While the disease left Julianna's body fragile and weak, her mind and spirit remained stronger than ever. Her conversations revealed a beautiful soul trapped in a body that, sadly, just couldn't keep up.
Girl Chooses Heaven
After a year fraught with infections, medical procedures and numerous hospital stays, Julianna was sent home under hospice care. Her mom said the plan was to try it out, get more support at home and go to the hospital again if she got sick.
Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
Julianna: not the hospital
Michelle: Even if that means that you will go to heaven if you stay home?
Michelle: And you know that mommy and daddy won't come with you right away? You'll go by yourself first.
Julianna: Don't worry. God will take care of me.
Michelle: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.
Julianna: I understand.
Michelle: (crying) – I'm sorry, Julianna. I know you don't like it when I cry. It's just that I will miss you so much.
Julianna: That's OK. God will take care of me. He's in my heart.
It was that conversation, and the fact that Michelle and Steve planned to honor her wishes, that sparked a controversy. Some felt that at 5 years old, Julianna was too young to make such a big decision. But those close to this precious girl saw it differently.
Her doctor completely agreed with her parents, saying,
"I have the utmost faith in her mother and father. They’re phenomenal parents and have her best wishes at heart.”
Likewise, one of Julianna's nurses shared the same sentiment, saying,
"You have to know what it’s like to hold down a child and hear them scream so you can stick a tube down their nose. It’s one thing to do that when you know you’ll have a success at the end, but for Julianna, there is no success…I want her living and dying in her princess room, at home, surrounded by her family, not in the cold technology of a hospital. There is no cure for her. Every day is a blessing. Every day is a gift.”
As for Julianna’s parents, Michelle and Steve would love nothing more than to choose a long and happy life for Julianna — if they could. But the disease and Julianna's declining health forced them to acknowledge they were not in control. As Michelle writes so eloquently on her blog:
"I have come a long way in accepting what I cannot change. The same God who made Julianna bright and lovely also allowed her to have a cruel disease. I believe that children who are asked to endure serious illness are given strength that the rest of us cannot understand. They are special. I think it's God's way of saying ‘I've got this. Just follow her lead.' So I follow."
After Julianna made her wishes known, her parents completely surrendered control to God. They lived with the knowledge that their precious girl will leave them sooner than they'd like. But they also lived knowing that each day with Julianna is a blessing. That each beautiful conversation Michelle records with her sweet and wizened daughter is a gift from God.
"The headlines call her the ‘Dying Girl.' We think she is the ‘Truly Living Girl.' If you want to know what it means to truly live, look into her eyes and read my stories. You will find no better teacher than this girl."
By His grace, Julianna’s parents received many more days than they ever expected — 18 additional months. And many of those days were good, infection-free days. They spent the time loving on their precious girl, reveling in her unbelievable imagination, and making memories.
Time To Say Goodbye
Julianna ended her fight on June 14, 2016 — what Michelle calls her “Heaven Day.” Rather than say goodbye in a sterile hospital room, Julianna passed away in her mother’s arms in her princess room.
“She was a bright light. An old and delightful soul,” Michelle wrote when announcing Julianna’s death on her blog. “She fought hard to be here, harder than I've seen anyone fight, with a body that was too frail for this world. She was so brave - and I hated that she had to be so brave. This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable.”
Rather than having a somber funeral mourning her death, Julianna’s family held a tea party, celebrating their precious girl’s life.
Julianna was scheduled to attend a tea party with her Kindergarten class the day before she died, but her condition deteriorated so quickly she couldn’t attend.
"It was a blessing it was so fast because I did not want her uncomfortable," she added, "and I don t think she was, not for very long."
The party, like Julianna’s life, was filled with love. And as Julianna often pointed out during her brief time here, love is a superpower.
A Legacy Of Love
Julianna’s story touched so many people all over the world. In fact, she even inspired a new campaign to find a cure for the devastating disease.
Charcot-Marie-Tooth Association launched the Stand to End CMT, where people are able to make donations and get involved with the campaign as ambassadors.
"Julianna would have loved this," her mother, Michelle said. "She knew exactly what CMT was and she knew what it took from her. She never complained but she knew. She knew that CMT was a bad guy, and she would be happy and proud to lead the fight."
As a neurologist, Michelle is in a unique position to understand the disease as both a grieving mother and a medical professional.
"CMT is pretty common but it's unknown, underfunded, underestimated, under recognized," she says. "It killed our daughter so I will never stop fighting for it... If something can come out of our loss-one of the things I hope for is a breakthrough for CMT."
We know Julianna now enjoys a perfect healing in Heaven. And she leaves behind a beautiful legacy of love. Her story is helping to advance the cause, and because of her, another family may find healing from this disease here on Earth.
And this brings her family comfort as they grieve the loss of their precious angel. As Michelle puts it:
“It hurts so much because the love is so great.”
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