I lost my daughter to a terminal illness 7 years ago. I started a nonprofit, Love Not Lost, to help others terminally diagnosed & support people in grief. Last year, my AMA was on the front page of Reddit. Since then, LNL has grown and I’m bac...

This is absolutely fabulous!
Usually grief support groups tend to be a majority of older folks, which I found extremely uncomfortable as a widow at 23.

-Do you try to have varying backgrounds, ages and circumstances so that those who grieve can have support that makes them feel comfortable? -How do you go about recruiting so that you have a diverse population of volunteers?

-What is the single most frustrating key piece to making an operation like this successful?

I’d love to see a grief support group that keeps younger folks in mind nation wide. That is something I’d very much like to be a part of! Is there a place I can watch to see when you expand to other states?

Thank you!

Thank you for your great questions and I am so sorry for your loss (especially at a young age). We are working to build a community that is completely inclusive for people who have lost loved ones.

We don’t have an online support group because there are so many that already exist. Our focus is bringing people together in the community, starting with the photographers who volunteer with us and the people we photograph (and their families) facing the terminal diagnosis.

We have been so grateful for everyone who wants to help further our mission. Because death doesn’t discriminate, we have found that our mission attracts a diverse group because there isn’t anyone who has not been affected (or will be at some point).

The most frustrating piece to find success for this cause has been securing funding for salaries. We have reached a growing pain this year where I really need another full-time staff member to help me scale.

I am really excited for next year though because we have a new program launching to partner with companies to provide grief and empathy training in the workplace. This will hopefully provide a much more sustainable financial model going forward, while also furthering our mission to support people in grief through all walks of life.

Please go to our website and sign up for our newsletter to stay in the know! Thank you!

Thank you for trying to help others deal with their losses! You mentioned that many online groups exist. Is there a list compiling many of them? I gave up trying to find a place where I was comfortable long ago. I lost my 14 year old son in an accident 10 years ago. I tried a Compassionate Friends gathering at the time, but I was not comfortable. Any online groups I've discovered are either very distressing because all the posts seem to be very recent and heart wrenching cries for solace or I don't fit their demographic because it's a group for mothers who lost babies, loss to long term illness, loss of spouse, etc.

I am so sorry for your loss. And I completely relate with your feelings about online groups. I am trying to figure out a way to make an online group a health/safe grieving place.

I attended a grieving mothers retreat that was pretty awesome, with a group from the Ethan Lindberg Foundation.

Did you find any resources that helped you? I would love to compile a list for people in the future.

What has been the most healing part of your experience so far?

This is such a good question and I really had to think about this...

The most healing part for me has been teaching others how to navigate grief. I believe it was Einstein that said you don’t really understand something until you teach it, and I would agree.

I had done a lot of inner work to grieve and heal from Skylar’s death, but only to a point. When I started helping other people walk through it, old wounds surfaced I didn’t even realize were there.

I learned so much and started exploring meditation, yoga, sound healing, reiki healing, float tanks, oxygen chambers, light therapy, EMDR therapy, massage, and more. It’s truly been incredible.

I am eternally grateful for every person who has enabled me to discover additional ways to heal and become my best self.

The realization that we are all hurting in some way or another and just want to be seen, known/understood, and loved is a new perspective that has brought a lot of healing too.

What has been the biggest change your organization has seen from the last AMA?

Last year, we were still figuring out what it looked like to take the organization beyond just me doing everything. This past year, we have gained so much more clarity and direction with how we can make the most impact.

It’s really exciting! Since last year, we added 8 photographer volunteers, we have partnered with Northside Hospital to serve their stage 4 oncology patients across the state of GA, we have doubled the board of directors, and we have a clear direction for city expansion as well as a new corporate grief training program we will launch next year.

Thank you for your question!

What's the best and the worst part of LNL?

Such a good question. I will start with the worst:

The worst is that the turnaround time on getting the books into the hands of the people we are serving is taking much longer than we want. We are understaffed and it’s just where we are right now with our workload. It’s always a race against the clock. Sometimes I feel like death is my boss and I am always busting my butt to meet the deadlines. Sometimes I make it and sometimes I don’t. It is always hard when we send the book to the family and find out the person died before it got there.

The best thing is that we have an amazing group of supporters who are willing to use their network connections, money, talent, wisdom, time, and energy to help us grow. Just this past year, we have gained critical corporate partners like Northside Hospital and Dragon Army, as well as individuals that are executive coaches, certified therapists, lawyers, writers, and more, who all want to help and are willing to donate resources to make it happen.

I have no doubt we can raise enough money next year to get the staff we need to manage our growth and serve our recipients with much more efficiency. I am really looking forward to that.

That's amazing, thanks for the answer. I wish I could help, the things you're doing are incredible!

Thanks! Join us on social media @lovenotlostorg to follow along. We will put needs out there from time to time and maybe there will be a person you can connect us to or just cheer us on... happy holidays!

Did your support system put an expiration date on their willingness to comfort and care for you?

No - in fact, they still care for me.

There were some people who fell away because they were exhausted by it all, but the true friends and family stuck with us and still do today. They are the reason the driving question of Love Not Lost is “How can we love people better?” Because I believe that when people are loved well, they can heal from anything.

Who your top 3 favorite rappers?

Missy Elliott, Nelly, 50 Cent

Who are yours?

Dealing with death on a regular basis can be draining. Have you ever had to deal with compassion fatigue? Also, do you have any key tips for helping those who are grieving?

As a proponent for more healthy death, grief, and end of life attitudes I know that having candid conversations on the end of life can be comforting. Even so, it's a topic a lot of people won't touch with a ten foot pole. Do you have any methods to sort of break down that wall and get the conversation rolling?

Also I just have to say I love the mission with LNL. I'm sure your daughter is absolutely honored to be the catalyst of such a noble cause.

Thank you so much. It can be draining and cause burnout if you don’t practice self-care.

To prevent compassion fatigue, we have a weekend retreat for ever photographer who joins us as a volunteer to teach them how to practice self-care, meditation, and how to hold space for other people’s grief without making it their own. A key necessity in helping other people is making sure you are healthy first. Counseling, yoga, meditation, reading and learning, etc.

The book I am writing will be an active guide to helping people navigate grief where I will share a lot of practical hands-on things people can do to help themselves and others. A big part of going through grief is knowing yourself and being able to listen to what you need at all levels - body, mind, and spirit.

Each person grieves differently. And even one person grieves various losses differently. That’s why you must learn to listen to what your body needs. I also teach that grief isn’t a bad thing. Our society pushes people to “get over it” or “carry on” as if nothing happened, but that only prevents healing from taking place. To heal, you must grieve. To grieve, you must feel. To feel, you must be present. And that is where the challenge truly lies. To be present in the pain.

As far as the end-if-life conversations, I encourage everyone to always act in love. Loving can sometimes require boldness and sometimes silence. Ask yourself, “how can I love this person better in having this conversation?”

You might find yourself thinking about their fear of death or how hard it must be for them... as you come from a place of empathy, and let go of your own agenda, you can help them feel safe and understood. Ask loving questions. Don’t make assumptions. Pay attention to the timing. Details and words are important. Choose them wisely.

If someone refuses the conversation, I would suggest explaining why you want to have it... that you love them, you care about what happens to them after they are gone, and you want to make sure all of their wishes are fulfilled. You might even ask them if they are afraid.

If you have to have the conversation, I know it can be so uncomfortable, but try to keep love in the forefront of everything you do. Let it guide your words and your actions - or silence and stillness. Best wishes to you and anyone else facing that situation. I hope this comment helps.

What is your advice for helping people who are grieving (like, what are the best things I could do to support a friend who has lost a family member)?

What is the accomplishment of your organization that you are most proud of?

My number one recommendation is always to lead with love and show up. Be honest. If you don’t know what to say, tell them that instead of anxiously sharing a cliche phrase that isn’t helpful. But don’t let fear keep you from doing anything. People need to feel like they are loved when they’re hurting.

Beyond that, you know your friend/loved one better than me, so ask yourself “how can I love them better right now?” Maybe it’s giving them a gas card, a restaurant or coffee gift certificate, or taking care of yard work... if they have kids or pets, it might be offering to take their little ones for the day. Meals are helpful, so is help cleaning and doing other tasks that require time and energy, but a great deal depends on the person and their needs/preferences.

If you don’t live close, we have an empathy card on our website you can request and send to them to let you know you are here for them, even from a distance. We will be launching more tools in 2019 to equip people to better show up for their friends and family who are hurting. Thank you for the question!

As far as the accomplishment I am most proud of, it is growing and helping people beyond what I can do myself. We have hired a part-time Director and have 8 photographer volunteers serving with us, and next year our plan is to double that.

I really want to help as many people as possible and I can’t do it by myself. It’s been so fun to watch other people join my mission and make it possible to impact much more than I could ever do alone. We were able to connect with so many amazing people and companies who are committed to help us in big ways next year as we work towards getting to a national level.

So how can I as a person going through grief receive help?

Right now, we offer grief support to the families we photograph who are facing a terminal diagnosis. We are actively working on resources that will be available next to anyone and everyone next year.

Our hope is to equip and empower the greater community around you to show up for you when you need help too.

Counselors already exist and grief support groups already exist, so we are not focusing our efforts there. You can go to any number of those right now if you wanted (including Option B support group online).

Our hope is to fill in the gaps where there aren’t resources. The book I am writing will be an active guide to grieving for those who can’t afford counseling or don’t want to talk to anyone. It’s going to be a really powerful tool to help people directly in grief. We have another tool launching in the Spring of 2019 and you can sign up for our newsletter to be the first to know about it.

If you are going through grief right now, I hope you feel loved and supported through the holidays. Peace to you and thank you for your question.

You're with people as they're dying.. tell me.. do you think they're going to an afterlife.. or do you think they're just.. fading away into nothing

Which do you... feel?

I’m not always with people as they die, but I have been with several people of various ages as they passed, including my own daughter.

I do believe there is something more. I was worried my daughter’s death was going to be traumatic, and even though it was heartbreaking, it was peaceful. I felt a spiritual presence in the room when she died that was almost tangible.

I also have a friend who hears from spirits. I knew her as a friend first before I learned of her gift. Once she told me about her ability this past year, we sat together and she gave me a message from Skylar (my daughter) and there was no possible ways she could’ve made it up. It was mind-blowing.

I have sent other friends to her who have experienced loss and everyone has received messages from loved ones - some very unexpected. It has caused me to dive into studying more about God, the after-life, and personal accounts of death and the spirit world. I grew up hearing about Heaven and Hell, but the after-life didn’t go beyond that. I didn’t understand that the people we love continue being themselves. They can still love us from the other side and can send us messages and guide us at times.

It’s all still pretty new to me. Sometimes I feel like a woo-woo crazy person, but I really think there is more to life than just our body’s timeline. I believe our spirit is meant to be eternal and serving a greater purpose than just ourselves.

nods I am a spiritualist and the afterlife is one of my favorite fields of study. It's comforting to know what awaits us, it can make humans divine.

However there is a limit to what I can see in the field so to speak without being dead or around someone who is about to be.. since suicide and murder are frowned upon I am pleased you shared this information.

Thank you. I was worried I would dig up troubling memories as even the most devout believers can be downright traumatized by post partum depression. It can be worse when you can sense these things, let your mind's eye search and it will not only look for them here first but when it does you can feel their absence from this world, and its not like feeling nothing, its more like tasting a negative number.. spiritual matters don't translate to human words well sometimes so I am sorrt if that makes no sense. It made the passing of my great grandmother far worse. It adds "without me.." to the sentence "they're in a better place" It sounds like you're closer to the peaceful and euphoric sides of the hereafter than most. Perhaps this death non profit is precisely what you're on this earth to do.

I apologize for any painful memories I may have surfaced. If it helps being there as they're dying is often far less scaring than finding them afterward... that "negative number taste" is all over the latter. Though it seems you discovered that first hand by avoiding it said taste.

But I've rambled enough. Again thank you

Thank you for sharing. I am currently reading “Our Life After Death” by Emanuel Swedenborg which is a very interesting read. I would not recommend it to most, because it can be pretty “out-there” to people who haven’t given much thought to the after-life, but you might enjoy it.

I met a lady on FB who died as a child and was dead for over 30 minutes. She shared her after-life experience with me and it was one of the most beautiful things I have heard. She described God as a beautiful bright light, full of love and energy, so much so that the sun looked dim. She also shared that putting words to it was difficult, but we stay in our “being” and can still use our senses, but without limitations caused by the physical body. God sent her back into her body and now she’s an incredibly spiritually enlightened artist and older woman who is also writing a book about her experience.

It’s truly fascinating the more I talk to people and study different theologies and beliefs.

Edit: autocorrect changed spiritually to spitballs, lol.

Are you comfortable going into more details on the message from your daughter? That sounds incredible.

Sure. It was truly mind-blowing. I don’t know another word to better describe it...

My friend Natalie (natalieclairehealing.com) invited me over for a reiki session and I told her if she happened to hear from anyone (I have lost a lot of relatives) then I would be open to any message that comes through.

She started the reiki session with me laying on my back on the table... she was moving her hands over my body (my actually touching it, but around 6-inches above it) and then she stopped. She placed one of her hands on my heart, which I thought was weird, but thought it was a part of the reiki or something.

Then she grabs my hand with her other hand as if we were holding hands (and that’s when I was really like wtf). And still with one hand over my heart, she moves from holding my hand to grabbing my first finger. My eyes popped wide and I looked at her wondering if that meant what I thought it did... and she replied, “that’s from Skylar.”

If you could spontaneously combust into tears, that’s what I did. Natalie never met Skylar, and never heard me talk about our interactions together. There is no way for her to have known, but that was how Skylar would give me hugs. We called them “hand hugs” because she couldn’t lift her arms to actually hug me, but she could squeeze my finger.

Through the tears, I managed to choke out, “Can you hear her?!” And she said, “Yes, and she is saying ‘mommy, mommy, mommy!’ over and over again.” And then when I didn’t think it was possible, I cried even harder because my daughter never got to say a word. Her lungs were not strong enough to produce sound outside of her giggles until she was 6-7 months old and then those disappeared too.

Needless to say, I was a mess, but also completely broken open in the best way possible. That night brought so much healing and love into my life. I am truly grateful for Natalie and her gifts.

Thank you for sharing. As a father of two I can appreciate your experience, and your courage to deal with it so courageously.

You’re welcome. Happy holidays to you!

Where all the money gone?

Can you be more specific?

Have you ever used the money for personal use? Gas, rent, food, hotels?

No. I have never used any donations for personal use. All of the money is used for Love Not Lost. I have a $35,000 salary that covers my personal expenses. I also cover our office space out of pocket as well as some other expenses.

Ok I'll just have to take your word on that.

I am not sure how else to prove it to you... Our 990 and Guidestar I have linked to above. I know there are charities out there that are complete scams, use money irresponsibly, and lie, so it’s hard to trust a new organization. I’m sorry the nonprofit world has a crappy reputation for that. I am hoping Scott Harrison of Charity Water and other honest, do-good organizations like ours can change that.

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What do you mean? I am working for Love Not Lost only.

Also - I am not sure if this makes a difference to you, but we have an accountable expense reimbursement policy that follows ITS guidelines and that the board treasurer reviews all expenditures.

Uh huh

I know... I almost didn’t write it because you have to trust that our treasurer is a good person and we are all doing what we say. But it’s important to me that people know we are following guidelines and that we do have practices in place to make sure things are being checked.

It all comes down to leadership. I have a strong ethical character and always seek to help others (thanks to the fear of my mom’s backhand as a child.) You can’t know that from being on the other side of a screen, but I hope over time you will see that we are an organization of our word who loves and serves people well.

What would you want to see? How can we be better at earning trust?

I'm wondering why you're so defensive.

I’m not defensive. I am genuinely curious how we as an organization can be more transparent and earn trust. I know a lot of people are skeptical, and I want to learn what people want to see so we can show it.