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Today I’m introducing you to Jenny Hull, a single mom to Josie who just turned 20 years old.  Jenny is also the CEO and founder of a nonprofit organization called Once Upon a Room.  They are changing the game for kids in hospitals, and we’ll get into all the amazing things they do toward the end of our conversation.  Jenny is one of the most comforting and compassionate people I’ve ever had the pleasure of talking with, and her family story is unlike any other – from head-conjoined twins given less than a 1% chance of survival, to adoption, to starting a nonprofit with the help of two incredible teenagers.  I can’t wait to share this story with you!

In this episode, we talk about…

[1:12] Meet Jenny Hull

Jenny is the proud adoptive mother of Josie, who was a head-conjoined twin that came to UCLA medical center from Guatemala around 19 years ago. At the time, Jenny had no medical knowledge but the organization she was with brought them over to the United States to take on a major surgery that had only been successful a few times before at that time.

Jenny describes her life as “incredible” and shares that she has one of the greatest families she could ever ask for. She is the oldest of four children, and has a big, supportive family of cousins, aunts, and uncles as well. Jenny grew up in California and attended college at Arizona State. 

[2:40] When Josie and Teresa came into Jenny’s life

After school, she worked for an organization called Healing the Children. They would bring kids to the U.S. from all over the world to provide access to major medical procedures.  

Josie and her twin sister, Teresa, were the biggest case that had ever come through. Jenny was very hands on with them, and she would spend two nights a week babysitting in the hospital so their mother could have a break. Jenny would often spend weekends in the hospital as well.

On August 5, 2002, Josie and Teresa underwent major surgery for 23 hours to separate them. The first journey was to get them to and through the separation, which they did successfully. The second journey was to support them in living and thriving. The girls did well, and they stayed in the hospital until January.  At that point, they went home to Guatemala for four months. Their health deteriorated, and it became clear that they needed to come back to the United States.

They were flown back to Los Angeles on an emergency flight. Teresa had contracted meningitis, and the day before getting on the flight Josie had a 105-degree fever and a 45-minute grand mal seizure, which she had never had before. After two weeks in the hospital, Josie was released. She had undergone a course of IV antibiotics to make sure she didn’t have meningitis as well.

At that point they asked Jenny if she would watch Josie for two weeks. She agreed, and the first thing she did was go to Pottery Barn to get kids’ sheets. Jenny and Josie had a ball together, and the family Jenny was working for at the time was super supportive and allowed Josie to come to work with her.

[5:42] Helping Josie to thrive

After about a month-and-a-half, they started to think that maybe Josie was well enough to return home to Guatemala. Unfortunately, however, Josie experienced hydrocephalus. Her brain was leaking fluid, and she had an emergency shunt surgery that led to paralysis. They didn’t know how or why that occurred, but it started a new journey and they knew at that point that Josie probably wouldn’t return to Guatemala for at least a few years.

Teresa was also still in the hospital, and Jenny continued to care for Josie. The twins’ parents would come back and forth, as they realized that the girls needed the medical treatment at UCLA. Medical care in Guatemala would not be sufficient for their needs.

Jenny and Josie have done Mommy and Me classes, Josie went to preschool, and Jenny was determined to give Josie the most normal life possible. She wanted Josie to have everything so she could thrive to the best of her ability. There are a lot of obstacles in the medical world and you have to be a fierce advocate for your child.  You have to keep going through it until you find what works best. There is no one size fits all, and they have gotten to meet some of the most amazing and positive people throughout their journey.

Not only did Josie receive excellent medical care, but she also had her biological mother and her adoptive mother in two countries that love her and want to be there for her.  Jenny thinks their adoption is so successful because it involves so much love and respect. Her biological parents  are the true heroes, as they were brave enough to allow their daughters to stay in a different country to receive medical care. Jenny has a great friendship with them, and they all consider one another to be extended family.

[8:45] Teresa’s story

When the girls were originally flown back to UCLA, Teresa was in and out of a coma due to her meningitis. She was the sickest child that UCLA had seen, and her prognosis was not good. The woman who was in charge of Healing the Children, “Grandma Chris” as she was called, would spend every single day at UCLA with her. When the doctor said they didn’t know what else to do for Teresa, Grandma Chris said that Teresa needed to go home because she was depressed.

The doctors were not immediately convinced of this plan. Teresa wasn’t getting worse, but she wasn’t getting better either. Chris urged them to let Teresa go home and live life. If that means her life is short, so be it, but she wasn’t going to get any better laying in a hospital bed. So, the doctors allowed Chris to take Teresa home. The first night she was home, Teresa yanked her feeding tube out of her stomach and they had to go right back to the hospital to deal with that. Once she was out of the hospital, however, Chris says she felt the weight of the world come off Teresa’s shoulders and she knew she had done the right thing.

Teresa is still alive today. She is nonverbal, she can’t walk, and she remains on a feeding tube, but Jenny describes her as an angel that “sits here on earth to teach us a lesson”.  Teresa is funny, and Jenny loves kidding around with her when they see each other. She and Josie have an incredible twin connection despite the fact that Teresa is nonverbal. When they were younger, Josie would tell people what Teresa needed and wanted. Jenny observed that it was almost like Teresa sacrificed herself for Josie’s well-being, especially in separation.

[11:41] Discussing the twins’ medical issues with Josie over the years

Jenny shares that there is something “divinely inspired” about Josie. The peace, calmness, and serenity she has, along with her optimism, is amazing. She has never fought life, and she is like the light of the world. There has never been a ‘woe is me’. There’s not even a ‘why can’t I’. Her outlook on life has always been, ‘How do we make it better for other people?’ She has never questioned why these things happened to her, and they always frame their circumstances by thinking about how lucky they are. They rolled two babies into an operating room, unsure if they would ever see them again, and when they came out of the surgery successfully then life really began.  

They have had that attitude since day one, and it’s led by Josie and her tenacity. When you have a body that doesn’t work, it can certainly lead to depression. Josie has had to undergo several surgeries, and all kinds of medical procedures and specialist visits. They have lived in therapy centers for her entire life. Josie is such a happy person, and the family is upbeat as well – both her adoptive family as well as her biological one. Josie’s biological parents are happy that her surroundings are happy. Josie’s positivity trickled into family life, the medical world, and to everyone she has encountered in her school life and beyond. She made a best friend when she met Sienna in elementary school, who has been with them every step of the way.

Jenny has always been very open with Josie about what happened, as well as about what could have happened. Josie knows that conjoined twins don’t always make it out of surgery, and Jenny believes there is something bigger than us that keeps Josie so positive. When Jenny first knew Josie was going to be with her, she decided to seek a therapist because of the potential impact of coming to America and going through medical trauma. After a consult, the therapist told Jenny that Josie was more well-adjusted than the children she sees with two parents and a typically developing body.  “Go home and love her,” was the therapist’s advice, and she was right.

At the beginning, Jenny was unsure of taking on single parenthood. She has seen her parents and grandparents have wonderful marriages, and her family is well connected and supportive. She wasn’t sure if she could handle being a single mom, but the gift of the journey has been the relationship between her and Josie.

[16:31] Staying on top of medical and therapy appointments as a single mother

Before Josie came into her life, Jenny was so scared of the medical world. She had a huge fear of needles herself, but she had to overcome her own feelings to be there for Josie. Jenny navigated the medical system as best she could, and she asked a lot of questions. She always wanted to know what was coming next. Jenny took really good notes, and kept everything in files. She tried not to overcomplicate things, and to just figure out what was needed and how it could be accomplished.

Her motto was, don’t tell me no, just figure out what needs to happen next. There is no manual for head-conjoined twins, so as a medical team they all had to figure it out together. Jenny’s mom was also a huge guiding force, as she went to many appointments with Jenny and Josie. Two sets of ears is better than one, especially with complicated medical issues. Jenny never left Josie in the hospital for a night by herself. Even if she had to go take a shower, another family member would show up to keep Josie company and make sure they didn’t miss anything. During this journey, Jenny has also relied heavily on the nurses and the child life specialists.  

[22:10] The evolution of Once Upon a Room

It seems appropriate that the first thing Jenny did when she found out she was taking in Josie was to buy those cute Pottery Barn sheets. We often do that when we find out we’re pregnant or adopting a new baby – we want to get the room ready. The environment of a room can also play a huge role in a child’s hospital experience. For years, every time they went into the hospital they would bring things for Josie’s room. They would bring her own bedding, stuff to hang on the walls, and whatever she wanted to make it more comfortable and cozy. When you have to be in the hospital for weeks on end, you want it to feel as much like home as possible.

When the medical staff would come into Josie’s room, they would always engage with her about what was in the room. They would talk to her about her stuffed animals, her favorite colors, and whatever else she had brought from home for that visit. One night, they were laying in bed, and Josie turned to Jenny and said, “We need to do something for someone else. I need to help other people.”  When Jenny asked what she wanted to do, Josie shared that she wanted to help decorate kids’ hospital rooms. It always made her happier during her hospital stays, and she wanted to do that for others.

Jenny agreed to call UCLA and see if they could arrange to decorate some rooms. The next day, however, Josie ended up in the emergency room. Jenny called some of her friends that work in foundations to share their idea, and they were able to come meet Jenny and Josie at the hospital. They diplomatically told her that they would get back to her about the idea, but Jenny pushed them to tell her who to talk to. She had to talk to someone in the infectious disease department, but she loved the idea and applied for a grant. They named it Once Upon a Room, and it took off. 

They thought they would do about 50 rooms a year and it would be really cute. They ended up doing 105 rooms the first year, and then it just exploded. They expanded to several different hospitals in southern California, and then people started calling from other states as well. At this point, they have done over 3000 rooms!

Teaming up with the hospitals is absolutely thrilling, and the child life specialists are the real unsung heroes. They reach out to the organization with patients, because they are on the frontline and they know who needs what.  It’s usually a secret from the patient, and they submit the applications. With the pandemic, they had to switch to dropping off materials to decorate the rooms rather than going in and doing the whole thing themselves.

Recognizing the child is the most important thing for them. The whole experience is about personalization. In every single room, a name sign goes over the child’s bed. We want everyone that walks into the room to know what that child likes. They want to recognize the child, not the condition. Josie is Josie first; not a head-conjoined twin and then Josie.  It is important to recognize the human being and the spirit, not the medical issue that afflicts them.

[31:30] The requirements for having your room decked out

When COVID hit, they were actually able to take a breath. Before the pandemic, they were doing 40-50 rooms a week just in southern California. By stepping off the hamster wheel for a bit, they have been able to organize new teams and really streamline some processes. There are, of course, millions of patients who deserve to feel better in their space.  

If you are in one of their 13 associated hospitals, a child life specialist will apply for the room decor. If you are not in one of those hospitals, they are currently working on a portal so that people can buy rooms for other people online and they will ship the materials to them. Once this shipping service is up and running, they will then be able to fund more organizations so they can expand to more hospitals and help more people. Once Upon a Room runs on volunteers, and all the money goes to their mission to decorate hospital rooms for others.

[36:56] Connect with Once Upon a Room and check out their work

If you would like to make a donation, your money will go directly back to the patients. Josie and Sienna also created a junior “room crew” of around 30 of their friends, to start. Now it’s about 350 strong and it’s inspiring to watch them. They run their own board meetings and put together their own decorating events. They connect really well with the patients, and the crew is really thriving.

You can learn more and check out their work at their website or on their social media accounts (mostly run by the junior crew, of course!) 

onceuponaroom.org

instagram.com/onceuponaroom

facebook.com/onceuponaroom

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