Elizabeth Allen was stunned when her healthy 16-year-old son died suddenly one day from HCM. She shares wisdom learned along grief's road with God's help.

4 Lessons From Loss

Bio

Elizabeth Allen is the oldest of 10 children and grew up in California. She met her husband as a student at BYU and they have lived in Utah for almost 30 years now and have eight children. Through her husband, she was introduced to alternative medicine and she has studied the healing arts for over 30 years. Her daughter Glenna was the first to be diagnosed with the hereditary heart condition HCM, which stands for hypertrophic cardiomyopathy. This led to the diagnosis of her husband and two youngest children, Stephen and Jesse.

Baffling Symptoms

When her kids were young, Elizabeth remembers her kids having stomachaches on a regular basis, and they just seemed to be sick a lot. Some were diagnosed with H. pylori, the bacteria that causes stomach ulcers, but there was something more going on.

At one point, Glenna was living with Elizabeth's sister in Connecticut. One morning, they weren't able to wake her up. They called the paramedics and testing began. The doctors were baffled. Her EKG, a type of heart testing, was more indicative of a 90-year-old who had had multiple heart attacks. They even sent her tests to Columbia University to have them looked at. Even they were baffled.

Health professionals then performed a stress test where she ran on a treadmill with a heart monitor on. But throughout all the testing, they never performed any imaging tests. Elizabeth had Glenna brought back to Utah and they got an MRI done. Finally, she received a diagnosis of hypertrophic cardiomyopathy. The doctors told them that this condition was hereditary and that everyone in the family needed to be tested.

What is HCM?

Hypertrophic cardiomyopathy is a condition in which the muscles of the heart wall thicken. This makes the chambers that hold the blood smaller so that the heart can't pump as much blood. Additionally, the fibers in the muscles tend to be scrambled and stiff so the heart goes into atrial fibrillation, which causes sudden death. HCM is sometimes known as the life snatcher because it's young people like athletes who suddenly drop on the field or court. HCM often goes undiagnosed because here in the United States we don't offer any kind of screening. Because of this, Elizabeth recommends that all parents, and especially parents of athletes know what symptoms to watch out for.

Common symptoms of HCM are a kids who tires out quickly and just often doesn't feel well. They are generally low energy. Getting an echocardiogram for kids with those symptoms is not very expensive but is an important test to visualize the thickening in the heart.

The thickening that they saw in Glenna's heart sent the Allen family to Stanford University to do genetic testing and counseling with a specialist. Their family now knows the specific gene responsible for their HCM. After this testing, they were able to find out that Elizabeth's husband and two other children also have HCM. Some of their other children also carry the gene, though they don't actually have the disease.

Jesse

Elizabeth's son Jesse was one of her children with HCM. But he never complained. He had some trouble, but nothing that really stood out to Elizabeth. A few days before the 4th of July, when Jesse was 16, Elizabeth remembers noticing Jesse's hands shaking but not much else. Elizabeth remembers that he had an invincible spirit and really pushed himself. He signed up for things like weightlifting at school, even though he wasn't supposed to. Elizabeth didn't know that, and Jesse's health plan hadn't followed him from middle school over to the high school. Even though Elizabeth was frustrated with him pushing himself so hard, he was the picture of health.

One afternoon, Jesse was out in Roosevelt with some friends. He collapsed. His friends didn't know what to do. They did their best and called the paramedics, but by the time the paramedics arrived it was too late. Jesse was gone.

Elizabeth was thrown into a tailspin. In the back of her mind, she kept thinking that her husband and two other children still had this awful disease. She wondered if they would suddenly drop dead one day too. They went to the emergency room often after his death due to additional stress.

Losing Control

Elizabeth started doing a lot of writing. She found the writing very therapeutic and helped her to find her faith. She has always believed that this life isn't the end, but even believing that doesn't make you miss them less. The thing about losing someone is that the love doesn't ever go away. The missing them is the hard part. Elizabeth has found ways to focus on the fact that every day is a precious gift. Elizabeth's oldest daughter was diagnosed with cancer or Lynch disease almost exactly one year after Jesse's death.

Anger and the Blame Game

Elizabeth had this unconscious need to feel in control. She started looking for someone to blame. Elizabeth wanted to blame the paramedics or the doctors. She wanted to feel like she could have changed the outcome for herself or for other parents. But in reality, that isn't how it works.

At first Elizabeth was mad at God. But then she realized that being mad at God doesn't accomplish anything. She also believes it's wrong to be mad at God, so she started to stuff down that anger and her emotions. Writing helped her to get back in touch with those emotions. As she started to write, all of the anger came bubbling up.

Elizabeth recognizes now that God always knows what we're feeling. He's like a loving parent and we are throwing a temper tantrum. He isn't sitting there going "You dumb kid." Just like any of us with our own children, He's going to do what He can to help us through it.

Finding Jesse

Jesse was an artist. He had taken a lot of art classes over the years and had left behind a lot of drawings. Elizabeth had framed a painting Jesse had done of David because it looked a lot like Jesse and it reminded her that he was watching them from heaven. She was trying to take a picture of the painting one day and kept getting a glare off of the glass. After trying several different angles, she finally got a good picture. Elizabeth didn't think about it again until about a month later when she had the opportunity to talk to a woman with psychic gifts. She told Elizabeth that Jesse wanted her to know that she was missing things. This frustrated Elizabeth. She couldn't understand what she could be missing.

Light

But then she started to notice that whenever they would take pictures, a big, bright light would show up. The most memorable was when Elizabeth was taking a picture with one of her daughters. It was nighttime and they weren't by any windows. Her daughter decided to lay down and take a nap under her coat which for some reason and Elizabeth snapped a picture.

Usually Elizabeth's phone would take a long time to have enough power to take a picture but this time it clicked immediately. That same glare showed up. It was so bright that it covered most of her daughter's face. She thought it was a glare off of a clock and angled away from it but when she angled away it just got even more intense. That's when Elizabeth realized it was Jesse. They could feel a connection to him. She realized she was missing Jesse's light.

Lesson #1: Manage Your Expectations

Elizabeth felt that the lesson God wanted her to learn through that what you experience isn't going to be the same as everyone else. Elizabeth had heard lots of people saying that their loved ones who had passed away came to them in dreams, so that's what she expected. But she learned that wasn't how Jesse came to her. He comes to her in pictures. She needed to learn to manage her expectations.

This made Elizabeth wonder how many people have loved ones who come to us in different ways, just to say, "Hi, I'm here, I love you," but we don't recognize it. They have different ways of showing up, like through music. Maybe a favorite song will play on the radio often. Elizabeth says it's important to share these experiences with others so that they can find how their loved one communicates too.

Other family member have had experiences with Jesse since he passed as well. Jesse came to Elizabeth's nephew and helped him steer back off of the path of drugs. Her niece felt that Jesse protected them during a car crash. These memories are so precious to Elizabeth and have allowed her to learn even more about Jesse, even after his death.

Lesson #2: Surrender

Elizabeth also had to learn to surrender. Her daughter is going through cancer. Elizabeth has worked in the healing arts and has different beliefs about how to help her daughter, but her daughter and her family decided to try chemo. Elizabeth didn't want her to experience that, but she had to surrender and accept the fact that she can't run her daughter's life. She has had to learn to surrender control. The best we can do is to educate ourselves, like Elizabeth recommends for parents of young athletes with regards to HCM.

God's Plan

Surrendering doesn't just apply to decisions in life though. You have to surrender to God's plan too. Even if you feel well-educated and prepared, there are no guarantees in life. You could do everything right and still lose someone. Elizabeth already had some training in healing arts when Jesse passed away, so she blamed herself.

But finally, one morning Jesse communicated with Elizabeth. She describes communicating with Jesse as "downloads of understanding" where the information just comes flooding in. He told her that if she had been home the day that he went out, she wouldn't have let him go. It happened the way that it was supposed to.

Elizabeth believes that people don't go before their time, but it's hard to accept, especially with young people. Surrendering to God's plan can be extremely difficult in those instances. You have to hope for the best and plan for the worst and accept God's will, whatever it might be.

Lesson #3: Understanding Grief

While Elizabeth had worked in the healing arts for a long time but still didn't understand how hard grief could hit and what it can do to the brain. Elizabeth's short term memory was decimated. She couldn't remember simple, everyday things. She felt crazy. Then there was the physical toll as well. You expect the emotional change, but many people underestimate the physical and spiritual challenges.

Elizabeth met a woman who had lost her son and she told Elizabeth to plan on taking lots of naps and not being able to continue going at the rate she was used to. She found that to be true. She just didn't have the stamina she used to, and she stayed that way for a few years.

People Grieve Differently

But Elizabeth found that her husband grieved very differently than her. That was actually very difficult for her and she started to understand why so many people get divorced after the death of a child. She likens it to two people who are both drowning. Who is going to throw them a life raft? You're not in a position to help each other. You have to look for the earthly angels who can throw you a lifeline. God sends people to help you, make sure you are watching for them.

Finding Meaning

For Elizabeth, her life raft was writing her book. She started meeting other authors who fueled ideas for her writing. Her book helped her to find meaning in her loss. She felt her meaning was to find other parents and help them to deal with their grief, to help people understand HCM and what they can do to protect their kids, and to help bring awareness to shortcomings in the school systems with regards to medical plans for kids.

Knowing the best ways to protect your kids is important. Maybe you could create some kind of medical identification for them, like a necklace or lanyard. This experience has allowed Elizabeth to become a voice for kids with these medical needs.

Lesson #4: The Importance of Self Care & Others

Elizabeth wants to remind parents going through the grieving process that self care is so important. It might be taking a long bath, journaling, writing poetry, or any number of things.

You can also take up a new hobby. One of Elizabeth's new passions became learning more about near death experiences. She found a group called IANDS, or the International Association of Near Death Studies. She really enjoyed going to their meetings and hearing stories of people who have connected with the other side.

Make Time for the Things that Matter

Making more time for her family was also an important part of healing. Taking every opportunity to hug her kids or tell them she loved them became a normal part of her day, because we aren't guaranteed tomorrow. Take every chance to be appreciative and loving. Always keep what really matters in life at the forefront of your mind. Schedule in the things that really matter, and be 100% present wherever you are with whatever you're doing.

Favorite Bible Verse

Elizabeth loves the story of Job, which really hit home for her after so much loss and changing of expectations. She also loves James 1:5, which says, "If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him." Elizabeth says that all too often we just don't ask. If we just ask, God is a generous God. He always wants what's in our best interest because we are His children and we are all gods. We also have to know what to ask for. He will give us discernment to know what to ask for. It all ties back to surrender, and not our will but His be done.

Resources

Elizabeth found the group Compassionate Friends), which is a group specifically for parents who have lost a child. There are lots of groups on Facebook that you can search for.

Elizabeth also created her own group, called Their Light Shines On). Some parents don't recover but it doesn't have to be that way. Look for the resources out there to help. Elizabeth thinks that sinking too deep into your grief can actually make it harder to feel connected to your loved one. Pray that you will be able to see the pieces of connection.

Books

There are a number of different books that Elizabeth has found helpful. One is "The Surrender Experiment" by Michael A. Singer. It emphasizes accepting whatever enters your path in life and the whole concept of surrendering.

Elizabeth also recommends "Man's Search for Meaning" by Viktor Frankl).

Elizabeth also loves the book, "Tear Soup," by Pat Schwiebert) which is appropriate for both adults and children. It addresses the different ways that people grieve.

What Can You Do?

• Just be There: Elizabeth says the best thing to do for someone who is going through the grieving process is to just be there. You don't have to say anything. Even just sitting a watching a movie with them is showing support and love.
• Bring Food: Rather than just bringing random food, ask them what they like to eat, what sounds good. Sometimes it can be difficult to even eat, and food may not be helpful.
• Say "I'm Sorry": Don't worry if you don't know what to say. Simply saying your sorry for their loss is appropriate.
• Listen: Often, they want to talk about their child, so just listen. Asking them about their child is a huge gift.
• Share a Memory: Sharing memories of their child, or family member is a treasure. Elizabeth wrote down the memories and dreams people had of Jesse so that she could read them.
• Don't Say This: Elizabeth says it's important to never tell someone that their loved one is in a better place. It just isn't helpful. It diminishes whatever they are feeling. Even if that person believes their loved one is in heaven, it doesn't change the fact that they miss them. The depth of their grief never diminishes, especially as they think about memories and experiences.

"Heart So Big"

Elizabeth's book is called "Heart So Big," and it is about her journey. The first chapter starts when she went to the hospital and saw Jesse's body. She goes on to explain grief and what you can do. Elizabeth also discusses getting the right supplements and nutrition to help your brain recover. Elizabeth also share how important it is to get educated about HCM and how to get your child diagnosed. And she explores different ways we might see our loved one showing up after they pass.

Contact Elizabeth

You can email Elizabeth at [email protected]. Put "Heart So Big" in the subject line so she knows you're here from the podcast. Elizabeth's website is www.heartsobig.com).

Final Thoughts

Elizabeth wants to emphasize that we have to be gentle with ourselves. Your best is good enough. Most people are doing their best every day, so recognize that everyone is trying their hardest. Give people the benefit of the doubt and don't take it personally. Let it go.

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