It is February and National Heart Month, tomorrow is Valentine’s Day and for next 48 hours the world will be full of hearts, candy, paper and real ones. This is the time of year when we think about love and what our hearts do and it is also a time to take a pause and think about what happens when our hearts are broken?
One out of 110 children will be born this year with congenital heart disease, over 40,000 children. What does that look like for those families? Over the years I have met a number of these resilient, brave and courageous parents and each one inspires me with their passion and commitment to their child. Their journeys are extraordinary and as a result so are these miraculous children who come through this, like dear Max Page we discussed last week.
On Thursday, we will meet Lisa Knight, a pediatric nurse who has been working with thousands of these amazing children. Her story and nonprofit will melt your heart. Until then, feel that beating heart of yours, be grateful for your health, all of the love in your life and be sure to share the love wherever you can. The world will be better today because of you.
Sharing is caring, if you are so moved or inspired, we would love you to share this to inspire another.
All of you who have been reading Charity Matters for the past few years know that Max Page and his family have become dear friends to Charity Matters. You may remember Max as Little Darth Vadar of the infamous Super Bowl commercial a few years back or from a number of posts we have done featuring his incredible philanthropic work over the years.
I met Max and the Page family through our mutual work at Childrens Hospital Los Angeles, where Max has spent a lot of time over the years. Max was born with a congenital heart defect and over the course of the last 13 years has had 12 surgeries. This past week Max went through yet another surgery on his heart,his 13th, to replace a valve that his body has outgrown. Each year over 40,000 are born with congenital heart disease.
His mother Jennifer said, “When Max was an infant, he had an incredible will to live. At age 4, he asked how much surgery would hurt? At 7, he wanted to know why he needed to go through with this and now at 10 he is keenly aware of time and how precious it is.”
Max and his family have used his celebrity and innate goodness as a platform for so many wonderful causes. He is wise beyond his years and he and his brother are two of the most philanthropic young people I have ever had the privilege of knowing, thanks to their inspiring parents.
Max as always uses his experience to make others lives better, even at the tender age of 13. His hope is that if someone is inspired to do something because of his journey, that they would consider supporting a place that has given him so much and become a second home, Children’s Hospital Los Angeles and the Heart Ambassadors program. Max recently said in an interview with Today, “I’m going to do whatever I can to help and do the best to bring awareness to kids like me.” Max you already have and we are cheering you on during your recovery.
Sharing is caring, if you are so moved or inspired, we would love you to share this to inspire another.
Many of you may have seen this piece when it was published earlier this year by Thrive Global, who I wrote it for. However, this week as we celebrate Christmas it seemed the right time to revisit or reshare with all of you. This is probably one of the most personal stories I have done in the past five years but it also highlights the journey that has lead me to this place….and a reminder of why we celebrate Christmas.
I was recently asked about when my faith or spirituality began. I knew the answer but growing up being told to never discuss religion or politics, I was initially unsure how to respond. I have never publicly shared this story but once asked I felt compelled to share, because I am proud of this journey.
I grew up in a big Catholic family, maybe an oxymoron, but a fact nonetheless. That meant mass on Sundays, prayers at dinner and a Catholic education, Kindergarten through high school. All of these rituals became the building blocks for my faith. Like most religions in the world, the blocks that were presented to me were love one another, trust God, people are good, help one another, and believe in something bigger than yourself.
I thought I had a relationship with God, but honestly I didn’t truly know what that was until the fateful call in the middle of the night that truly changed the course of my life, fifteen years ago. My parents and their friends had been in a horrible car accident. My mom was dead, two of my parents friend were also dead and my dad and his best friend were barely hanging on.
That was when my relationship with God truly began. I prayed, begged, and pleaded with God to not make me an orphan and to save my Dad’s life. A man who has incredible faith. God listened and while my Dad had a long road, he survived and eventually thrived.
Unbeknownst to me, my mom had bought raffle tickets before her untimely death, and a few months after she was gone we received a call that we had won a first class cruise anywhere in the world. I was sure it was a sign but wasn’t sure what it meant? My husband and I picked a Mediterranean cruise, that had a list of places I had visited with my parents over the years. My hope was that somehow, on one of these stops, God, my mom or something would come to me and make sense of the insanity of my loss and overwhelming grief.
City after city on our stop, nothing. No signs from above in Paris, Florence, Venice or Rome. Finally one stop from our final destination, I had given up. We arrived in a place called Ephesus, Turkey. Because we had no idea what to expect in Ephesus we went with a guide through the ancient city.
You might have thought going to church every weekend of my life I would have recalled the Bible readings of St. John to the Ephesians or have known that when Jesus was dying on the cross he is believed to have asked John the Baptist to get his mother to Ephesus to keep her safe. Nope, I was clueless. We listened as our guide wove the history of Christianity, Judaism and the Muslim faiths into a beautiful tapestry that if all could hear, there would not be any religious wars. He was mesmerizing.
Then he took us up a hill to Mary’s house. Yes, THE Virgin Mary’s house. Really? How did I not know about this? The Pope had recently made it an officially site of pilgrimage. I stood in front of Mary’s little brick house, smiled for a picture not knowing what was about to happen. I walked into the darkened tiny room with a stone floor and was struck by the most overwhelming feeling. Tears streamed down my face, I could not speak (which lasted over 2 hours) and the emotions where so overwhelming, unexpected and powerful. Love is the only word that would explain how I felt, overwhelmingly loved.
Was it my mom? God? Mary? I didn’t and still do not know. My husband asked me if I wanted holy water, I nodded yes. He asked if I wanted to write on the wishing wall, I nodded yes. He asked me if this is why we won the tickets for the cruise? Tears streamed down my face like a faucet, as I nodded yes. I knew for some unexplainable reason that I was supposed to be there in that moment. A girl from LA with three small sons halfway across the globe and I was meant to be in Ephesus, my mom had brought me here for a reason.
That moment changed my life and I now know there is a power in the universe greater than us all. Whether you call it God, Mary, love, light, spirit…. it doesn’t matter but I know and believe it is real. Since that day almost fifteen years ago, I have used my life to serve others. I believe in the plan that has been set for me. A year after that trip, a group of us started a nonprofit to provide chaplains of all faiths at Childrens Hospital Los Angeles. Since that time, in all my work with nonprofits, I am privileged to see and feel that same goodness over and over. As they say, “Faith is seeing light with your heart, when all your eyes see are darkness.”
Sharing is caring, if you are so moved or inspired, we would love you to pass the torch/post and inspire another.
Like all good fairy tales, it begins with once upon a time…there was a beautiful woman named Jennifer Hull and her heart was so huge that she not only adopted one child but created a non-profit to help hundreds more sick children at children’s hospitals around Los Angeles. Jennifer and I have known each other for a number of years, and last week we not only sat down together to catch up, but my son and I were invited to help Jennifer, her daughter Josie, and best friend Sienna, with their incredible cause called Once Upon a Room. A non-profit organization that decorates rooms for children who have long stays in the hospital.
Rather than me continuing this fairy tale, I think the conversation tells this story the best.
Charity Matters: Give us a little back round on you and Josie?
A little history about Josie and I…I am the very proud, adoptive mother of Josie. Josie and her sister, Teresa, were born in Guatemala and were conjoined at the head. They came to the US at 9 months old. At 1 years old they underwent surgery done by a 50 person medical team to separate them. After 23 hours in the operating room our two beautiful girls were rolled out in 2 separate beds.
We were granted a miracle that day and have spent everyday since trying to do everything in our power to better the girls’ lives and those around us. As one can imagine our medical journey did not end at separation surgery. There have been countless hospital stays with over 30 surgeries combined and hours upon hours of physical therapy.
We know from first hand experience when you are in an environment that makes you happy and calm healing is easier to achieve. It was important to Josie and I to help others in medical situations feel better. The main portion of our program is to decorate hospital rooms for pediatric patients going through active medical treatment.
Charity Matters: What was the moment you knew you needed to act and start your non-profit?
Jennifer Hull: Once Upon a Room has a tag line…Every child has a story. My sweet daughter, Josie spends so much time in the hospital. Every time we are inpatient, I noticed her spirits were lifted when we would bring in items that were ours and set up a mini “house” like atmosphere. We have had the pleasure of meeting other patients and families over the years and when we would visit them we would bring something to brighten their room we could see the joyous effect it had.
We wanted to expand our reach and really transform the hospital setting into a personalized, happy environment. Josie and I got excited about the possibility of spreading joy to others in the hospital. We knew we needed to do this. We wanted to serve others and this was such a perfect fit for us.
Charity Matters: Who along the way has helped you make this journey happen?
Jennifer Hull: Siena Dancsecs is a huge contributor to our success and is one of Josie’s best friends and has been through so many ups and downs with Josie medically. Siena’s passion to help others started to light on fire. At 11 years old she called to tell me that we the organization should be named Once Upon a Room. She said that our mission should be to serve pediatric patients in and out of the hospital that were in active medical treatment.
Siena says, “Through my friendship with Josie I wanted to do more. We do what we do because we can see the long-term impact it makes. I remember getting asked to go to the hospital for the first time. I honestly had no idea what to expect, what I would see or what I would hear. Normally when I think about a hospital I think about all of the needles, medicine and doctors. We get to see a different side of it. When we walk into those rooms we get to brighten this patient’s room with what they like. It becomes all about them in a different way. It’s not all about their disease or injury; it’s about them as a person. That’s what makes it so special. Getting to make these patient’s days just a little bit brighter. And truly it affects not only their environment but also everyone around them. It brings this glow to their surroundings, helping them start fighting a little harder.”
Charity Matters: What fuels you to keep doing this work?
Jennifer Hull: This is an easy question…making other people happy!! As Josie says, “We do this to make other kids happy. I know how hard it is to be in the hospital so I want to help them too.”
We can’t change the medical outcome but we can change how they feel when they are going through this journey. You can’t believe how rewarding it feels to know that you put your heart and soul into doing something for someone else that hopefully makes a difference in his or her life. Every room we do we put ourselves into their shoes for a moment. We do our best to anticipate what they would want or what would bring joy to them.
When we get the theme of the room we try to do the best we can to make it perfect for them. You would think after doing over 500 plus rooms it would be redundant but instead we try to make each room better and more personalized. Making someone else happy fuels us. Hopefully that person is the patient, but also the family. Being in the hospital is so stressful for the whole family.
We are one of the few people who walk into the room and can concentrate on the person not the medical diagnosis. We get to recognize them and their interests. The family gets to be reminded of theperson not the condition.
The other part that fuels us is the excitement that it brings to the medical staff. You almost see them invigorated. It is so much fun to watch them and their reactions when they are watching a room reveal for one of their patients that they clearly have compassion for. It is a gift to us to make to make others feel special.
Charity Matters: When do you know you have made a difference?
Jennifer Hull: There is an interesting thing that happens in our group. It isn’t only the patients and families that we affect. Many times it is the volunteers or vendors that we see affected by our work. It is so much fun to go into Target and the cashiers are all excited to see what rooms we are shopping for. It is so rewarding to see the change in our volunteers when they come to help.
Witnessing the love and compassion that kids and teens give to patients is one of the best gifts in my life. We don’t give them enough freedom or opportunities to give to others in a meaningful way. Giving them a positive experience serving others at young age while hopefully help them remember that feeling when they are adults and they will find a cause that they can make an impact giving to as adults.
Charity Matters: Last question before we end this fairy tale, tell us what success you have had?
Jennifer Hull: Our success isn’t measurable. Success for us is determined by the about of love and compassion we are able to spread to our patients, families, staff, volunteers and vendors. It is the ability to spread hope and happiness. Our success is based on helping and serving others.
Now that is happily ever after….if ever I have heard one.
“Striving to be of service is not only a noble thing to do, it’s the best way to lead a truly fulfilling and significant life.”
The other day, a friend of mine who started a non-profit called Once Upon A Room.Org and I met for a quick catch up. I told her that I really wanted to interview her for Charity Matters and she said, “Don’t interview me, come and join me….and bring your son.”
I came home, thrilled about the invitation, my 16-year-old son….well, not so much. I heard a variety of excuses, his summer job, things he needed to do, etc….however, I persisted. Without having a full spoiler alert (the story is coming next week) he relented, as you can see from the photo above.
He was late for his job, his first job ever, and very stressed when he left our work at Children’s Hospital Los Angeles. Our service had made him much later than I had told him. I love serving others and this experience was magical and yet, I felt guilty that he was late for work and thought that perhaps….maybe…just maybe, service isn’t for everyone and had I pushed too hard?
It was about an hour into his job, that I received a text. It said, “Thank you Mom. Today was so much more than I expected. Even though I was late for work, it was worth it. I had fun and thank you for bringing me with you.”
His text said it all. Leading a significant life is not about looking at the mirror, it is about turning the gaze in another direction. Service heals us all, only if we let it.
As February comes to a close I wanted to make sure that the last post of the month was about the heart. As many of you know I became friends with a wonderful family, the Pages thorough my work at Childrens Hospital Los Angeles. They are an inspirational family and despite the adversity they have faced in light of their son’s congenital heart disease, they always find a way to turn a negative into something positive for someone else.
Some of you may remember Max, as young Darth Vadar in the infamous Volkswagen commercial a few years back. I received an email from Jennifer the other day about a new campaign Max is helping shine some light on, called Mended Little Hearts.
This inspiring organization began in 2004, when four heart patients came together in Boston to discuss their heart surgery experiences. Out of that meeting came the recognition to support these families of children born with heart defects and heart disease.
Today, Mended Little Hearts has over 10,000 members and over 80 Chapters in the U.S. and Mexico. Proof that one heart can heal so many others.
The second Sunday in December is an international day of remembrance for children that have died. Every year, in the middle of this crazy hectic season, I curse trying to get to this candle lighting event, I am running on empty and overload, a million lists rushing through my head…..and then I walk into the auditorium…..where I am greeted by hundreds of faces, many who are wearing their deceased child’s image on their t-shirt or clinging to a framed photo, as if it is a life raft…and I pause.
It is then, in this moment, that I know what is truly important. It is here, as I begin to hear one parent share the story of their child’s short journey on this earth and the big impact this small life had on so many, that I know what matters. In this room is full of sniffles, tears and broken hearts the traffic is forgotten, the holiday list vanish and all that remains is love and compassion.
The emotion is palpable and the love and connection these people feel for one another, although strangers, is real. For each of them has walked this path, a hellish journey where they never feel whole again because they have lost a child….their child.
Over 40 years ago, in 1969, a chaplain at the Warwickshire Hospital in England brought together two sets of grieving parents, realizing that the understanding and support they could give one another was greater than he could provide. At that kitchen table the Lawley family, Henderson family and chaplain, Simon Stephens created The Society of Compassionate Friends.
Today, The Compassionate Friends has over 700 chapters nationwide to offer friendship, understanding and hope to bereaved parents, siblings, grandparents and family members when a child has died. There are TCF chapters in more than 30 countries around the world, lead by volunteers who are bereaved parents, siblings and grandparents.
This Sunday, December 11th at 7pm, in time zones across the globe, the world’s largest mass candle lighting event will create a 24 hour wave of light in remembrance of a child gone too soon. I will be lighting a candle for so many, gone too soon and once again be grounded in what it is that truly matters…..love.
I think by now most of you know that I am a huge fan of Childrens Hospital Los Angeles. Over the years my involvement has expanded to a number of different projects, but one that I am so proud of is the Junior Ambassador Program.
A few years back, when touring the new hospital space, a handful of us began a conversation about the need to get our children involved with supporting the hospital. That conversation was the beginning of Junior Ambassadors Program, a place where children use their talents to help others. Some children sell their artwork or photography. Some students throw parties, our son threw touchdowns for sponsorship and raised thousands of dollars for the hospital, simply using his skills to help another.
A recent catch up with a friend from CHLA, proudly shared how the program has grown from a handful of ambassadors to hundreds and while these ambassadors may come in small packages, their work is mighty.
This year the Junior Ambassador will raise hundreds of thousands of dollars for Childrens Hospital Los Angels. Children helping children, there is simply nothing better.
We all dream. Sometimes we don’t remember them, sometimes we wake up feeling like we are falling and sometimes we just dream big. But it is those moments when we are awake and realize that our dream is real and really happening…well there just are not words to describe.
That is exactly what happened last friday at Childrens Hospital Los Angeles. The dream became real, not only for me, but for thousands of patients and families that will now have a place to go, to think, to pray, to meditate or just to be. Over twelve years ago we set out to build a non-profit to provide chaplains of ALL faiths 24 hours a day 7 days a week at CHLA, and we did it!
Then once the hospital had chaplains, we realized they didn’t have a chapel that could accommodate more than one person at a time. So a journey began to create a beautiful space where people of all faiths or none at all, could come and be. Patients, families, doctors, nurses, a place for all.
Last Friday morning, as I watched civic and religious leaders from all over Los Angeles, open and bless the new InterFaith Center at Childrens Hospital, I knew the dream was real. It took a village and years to make it happen, but it did. Standing there in that moment, my heart filled with pride in being a tiny part of this incredible legacy of compassion.
I was reminded that dreams do come true, especially when you dream big.
I was raised by parents who told me I could do or be anything and somewhere along the line I began to believe them. “No” has never been a word in my vocabulary, for better or for worse. Did I mention that being stubborn is also part of the equation? The result of this is being a bit of big dreamer.
Over a decade ago, a friend reached out and asked a group of us girls for help. He was the one of two chaplains at Childrens Hospital Los Angeles. He shared his vision for help, support, families having chaplains of all faiths before surgeries, end of life, celebrations and simply someone trained to listen and provide faith and hope. It was a tall order for a group of women who had never started a non-profit before but a perfect big dream.
Within a year of the launch of The Spiritual Care Guildwe had chaplains 24 hours a day 7 days a week. But big dreamers don’t stop at that, they keep going because once one dream is achieved, its time to make the dream bigger. Each year the Spiritual Care Department grew as did its integral role in the hospital, with staff and patient families.
Like all good dreams, they can’t come to an end. Then five years ago, the dream expanded to having a chapel that would accommodate people of all faiths, families, patients, staff and give them a place to pray, to think, to hope and to dream. This was the biggest dream of all, especially in a hospital where real estate is reserved for medicine and all that goes with providing excellent health care to tiny patients.
However, last week that dream became a reality. I stood in the physical space, now a construction site, that will become the new Interfaith Center at CHLA. It was such an amazing moment to see what happens when people come together with a common goal, a big dream and a huge team effort. Dreams do come true and the bigger the dream the better!
The other day I went to the dentist for my annual appointment. My dental hygienist, who has become my friend over the past decade of having my mouth held captive, did not look like her usual perky self. I only see her twice a year but she somehow feels like a dear friend every time we visit. I asked her about her children who are the same age as mine and as the tears began to flow, she shared that her college age son was just diagnosed with cancer.
I came home devastated and in shock at how quickly lives are altered by the words, “You have cancer.” As I scrolled through Facebook as a distraction, I came across this and felt compelled to share.
Having spent over a decade at Childrens Hospital Los Angeles, supporting families in crisis, this spoke to me on so many levels. Coincidentally, September is Childhood Cancer Awareness Month. Life can change on a dime, one never knows and it is the power of love, compassion and a fight song that makes it all worth the fight.
People ask me all the time about suggestions for raising philanthropic children. While my sons are far from the poster children for philanthropy, they certainly do a lot to help others. My oldest has spent more than 600 hours in Watts, serving inner city children. His younger brother throws touchdowns for Childrens Hospital Los Angeles and reads to low-income children struggling in school. The youngest, at 12, is still finding his way but a few adventures to the LA Regional Food Bank, Childrens Hospital and Watts are giving him food for thought.
The reality is that there is no simple answer to this question and that raising charitable children is an ongoing process. I read an article recently that said role modeling philanthropy is simply not enough. The article referenced a new study from the Women’s Philanthropy Institute at Indiana University. The director, Debra Mesch, said “the research showed that talking to children about giving increased by 20 percent the likelihood that children would give.”
Here are a few tips to remember as we approach the season of giving:
Six Tips for Raising charitable children:
Start early, as early as 4 or 5 years old. Giving becomes a habit.
Talk to your children about what causes interest them and bring causes to their attention.
Be intentional by involving your children in your own charity endeavors.
Use online tools to research organizations to involve your children
Be consistent. Make charity a part of your traditions, the holidays and birthdays.
Emphasize the joy because giving feels great.
Benefits of raising charitable children:
Opens children’s eyes to the fact that others are not as fortunate as they are
Develops empathetic thinking
Fosters an appreciation for what they have
Correlates to improved performance in school
While this topic is relevant for the holidays, it is important to remember that giving does not just happen once a year. Teaching the gifts you receive from giving should be a part of the year, not simply the season. Once your children feel how great it is to give, their lives will forever be altered in wonderful ways.
As you already know, I spend a lot of time talking about ways to use your gifts to make others’ lives better. What is a little less comfortable is talking about my own time and what gifts I use to share with others. So today, I thought I would let you know that I do practice what I preach, or at least try my best….
For the past few months I have been working on a new video for the non-profit, Spiritual Care Guild, which ten of us founded a decade ago, to provide chaplains at Childrens Hospital Los Angeles. As a story-teller (I am Irish after all) telling the story of our non-profit was challenging, fun and at the end rewarding. So please, take a look….
When we began our group, the first benefit was Field of Dreams, an outdoor movie night set on a baseball field. Our hope was to “build it and they would come.” A decade later, I am so proud to say they did. Ten years ago, we could never have imagined all this group has accomplished. Today, our dream continues as we continue to support and provide chaplains to thousands of families and children at CHLA.
Did that catch your attention? Well so did the inspiring man who brought his story to the children at Childrens Hospital Los Angeles last week, Paul de Gelder. Paul is an Australian Navy Seal (down under they are called Navy Clearance Divers) who was diving and lost his right arm and leg from a shark attack.
Paul’s life prior to his attack was one of extreme adventure, fun and about Paul. But as he spoke to some teen patients at CHLA. He shared what he has learned from his challenge. He recalled his naval training and the words the words he was taught, “Improvise, adapt and overcome.” How those words and the attack altered him forever.
He learned gratitude for everything, he learned to smile at everyone, he became gracious and giving. So many people had reached out to Paul and helped that he was now compelled to do the same. Paul committed to inspiring others and now his work is primarily motivating and uplifting others.
The moment that made Wednesday so powerful was when a young patient came up to Paul and shared that he had just found out he was going to lose his kidney. He told Paul, ” I am going on a donor transplant list and dialysis and before you spoke, I was having a very bad day. But if you can improvise, adapt and overcome, than so can I. I am going to be fine.”
It was a beautiful moment and a perfect reminder of the power we all have to shift and impact someone’s life when we open ourselves up to give.