The Adapted Life - SoundSage

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Hello,

In this episode I speak tenderly about how meditation has transformed my journey with grief and pain. This is my first ever guided meditation, so I am sure it won't be perfect.

I have layered grief, and deep trauma. It has significantly caused me so much difficulty in finding my way again. This is why I added on "finding next", because this journey is just that, a journey.

I hope this meditation brings you some calm. I love visualizing the forest full of giant pines that we saw in the San Jacinto mountains in California where my daughter recently got married.

I'm trying to live each day, with the goal of existing and creating from my heart. It is about all my broken heart can spare. But I am here, dear ones. I am here because I know I am not alone in my pain.

Maybe we can step side by side and heal trauma together. Maybe even one little moment is enough.

Please feel free to leave me some feedback, you can find me also on you tube, instagram, Facebook, and here.

I have been hoping to learn how to be a meditation guide, which is what I am working on now. I thought... why not just try.

All my love,

Julie

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The Adapted Life Podcast, by Julie Hasselberger

Season 4 Episode 35 "Love in transition."

Adapting in our brokenness.

Love is not static, it bends, breaks and mends across time. The loss of child shatters a family, but love finds ways to carry them forward. Growth in empathy, and emotional intelligence can reconnect partners even decades later.

Love is like "Kintsugi" The Japanese art of repairing broken pottery with gold, the cracks remain, but they shine.

Thought provoking questions are shared regarding our experience with adversity, loss, trauma, grief and how love in so many of our relationships is sometimes damaged and rebuilt.

We lost our beloved Daniel on January 12, 2024. Stay with me as I work through grief and finding purpose. It is early days. And very hard.

Music licensed by Epidemic sound and Premium Beat

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In this episode I want to take a gentle walk through discussing what happens when your caregiving world ends.

I offer a moment of calm meditation, as well as a journal prompt to think on at the end.

which is, " What truths have you faced when your role as a caregiver for your loved ended?"

The double loss refers to the loss of a loved one, coupled with the loss of dedicating your life to creating the world of caregiving. Everything you had been doing ends. It is a very confusing time, and it has left me completely lost and not sure of who I am now.

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Hi. My name is Julie Hasselberger. I am going through some incredible grief and trauma healing. My son passed away at 26 years old, and losing him left a hole in my heart. Shortly after that, I experience some terrible relational trauma and felt myself in a spiral. As I continue to seek what comes next for me at 59 years old, having everything change, I want to share the light and hope that is guiding me. It is my goal to be of service in some way to others. That being said, I hope you will listen to my stories and thoughts. We are all on some level of self actualization, I think. This is done, this podcast, out of my love for my son, for others, and for myself.

This episode will cover why being able to stay in the present moment is helpful to our connection and healing. I'll share some tools that I am using, to manage stress, adhd, cPtsd, complicated grief, dissociation and depression. Yes, I have all of those.

What is our real "authentic" self. How do we figure that out?

What is the benefit to our lives, from practicing mindfulness and being still?

We hear alot about "be in the present moment" but what exactly does that mean?

In all healing modalities that I have found myself in, there is an element of finding peace and growth, in the present moment. Meditation has literally transformed my ability to know who I am on the inside.

What are a few tools that can help dysregulation, and other trauma related symptoms? I share a few of mine...

Meditation .

Gratitude work.

Journaling.

Exercise.

Yoga.

Prayer.

Being in nature.

Art work.

Music.

Caring for plants.

Being with animals.

Setting intentions.

Affirmations.

Vision boards

Goal Setting

Manifestation practices: abundance, financial wealth, health, family goals

I am a student of manifestation, and believe in it so strongly.

I wrap up the discussion of healing, with a chat about energy. During my entire life I have always felt a deep desire to care and help other people. I also seem to be able to sense and feel and see energy. I have recently affirmed that I am an empath, and none of this really surprises me. I have just been entangled with being a special needs caregiver for my son, 24/7 for 26 years. Now that he has passed away, I am left just witnessing what has been around me this entire time. Some of it, really not so great. Some of it, maybe, lying dormant in a sense. But understanding energy is new to me, and it is helping me heal myself.

Stress, fight or flight, ages us and makes us sick. So why not, I say, try living a life from the heart space. Affirm what you believe you are worth, and do not settle for the breadcrumbs. I am definitely in the middle of personal crisis myself right now, and spend time lost in the pain. Which I am learning is also perfectly ok. It is perfectly ok to feel and be whatever and who ever you are. When I do re emerge from periods of low times, I am right back into the practices of spirituality, stillness, creativity, focus, love, gratitude, developing healthy boundaries, and accepting what my intuition is guiding me towards.

This is what being human is. Learning and being curious and accepting. I am trying. I am determined to lean into intuition and let it guide me, from the space of the very moment I am in.

Also, I feel my son’s

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The Adapted Life, Finding Next

Podcast

Season 4

Episode 32

I have been wandering around in a place called grief and trauma. As I write this, I can share that I most definitely am not the same person I was before my son passed away on January 12, 2024.

For 26 years I loved and sacrificed for my son. But there is so much more to my story that was going on at the same time. Trauma, dissociation, depression, betrayal, confusion, and fear.

What do I do now? Which way do I go? Certainly not to my early career dreams, because that is not my timeline anymore. Come along while I explore and learn how to take brave steps into the new version of me. What do we do next, after loss, after the remaking has happened.

When Daniel passed away, I sat with my reality at age 58, that I had no idea who I was. Or what to do next.

This episode is my evidence that I have a lot of purpose still to discover. And that I am a woman independent of my story, but also empowered by my story.

For the time being I will call my podcast, The Adapted Life, Finding Next. It will forever be a place of love and compassion for my Daniel. For what he taught me about life. And for other women who may just possibly be like I was. Surviving and caring for someone else, shrinking themselves because who has time, swallowing trauma and living on bread crumbs, metaphorically. I am so grateful, and inspired. I am still hurt and grieving.

Could it be, that by dealing with some trauma, some other energy is now leaking out. I just feel so many things, for myself, for others, and I love that my weird ness is not something to calm down, or quiet down, or shhh…. It is simply me.

So, I’m adapting and learning. Seeking and still also hurting and full of pain. But the direction has changed. I took back my power by affirming that, no, that thing was not ok.

I am proud that I was a Mom and caregiver. I am also seeking avenues for healing with my other children for what it has cost them.

Thank you for taking the time to listen and connect.

Keep working on getting closer to your inner light.

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254 days ago, from the day I recorded this talk, my beautiful son Daniel passed away at the age of 26.

The journey I am on now, is really bizarre. There is no linear progression as far as I am concerned. Having been my son's full time care giver for his entire 26 years of life, made an indelible mark on my soul. In the loss of my boy, and the beautiful life we had caring for him, I am mostly alone and sad. Talk about your loss of purpose. The struggle is real.

Sometimes I have hit days where I experience what I named "the stuck". Where I completely lose all focus and nothing I try to do feels possible. Like a numb dissociation. So strange to be "just me" and not "me and Daniel".

The adapted life, is still the adapted life. Adapting to loss of the son who fostered the reengineering of our entire life style and value system because he needed care 24/7. And then, blip... I stand in my home, listening to the sounds of the house. So quiet. Stuck in the unknowing.

Walk with me as I work through these days of grief. I have found such comfort in connecting to people who also know the pain of tragic loss. It remakes us into a new person. A stranger when we look in a mirror. That is very strange.

And the pain doesn't end. You grieve your person, and you also grieve the loss of yourself.

That is where I am now. Intuitively trying to navigate through a strange reality where I barely know myself now.

Please visit my art shop on ETSY.com called "Daniel's Special Art". It is the shop we created with our collaborative art pieces. And also is going to showcase the watercolors and other pieces that have been my way to channel my pain. A story. A journey. A life well lived. A life lost. The work of getting unstuck.

All of my heart to you,

Julie Hasselberger

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Even though I Grieve

Even though I grieve

I can smile at your photo

Even though I cry

I can feel grateful

Even though I am broken

I can limp along today

Even though I miss you

I can create new memories now

Even though you were always here

I know that you are gone

Even though my house is quiet

I can still feel, and hear you

Even though I grieve you son

My love spans all time and space.

I will always be your Mom.

You will always be my Daniel.

Even though I grieve and hurt

I am healed by memories of you.

Dear listeners and friends,

This is the idea behind this episode .... I AM 213 DAYS INTO THIS GRIEF....

So, I say to myself, each day. “Wake up. Breathe. Be grateful. Check in with yourself. What should I do next?” Here I am. Back in the comfort of my own words and hoping that somehow, I can find others who are learning to live with loss, and grief. Are you there? How can I help? How can we help each other? And I stop, make myself a coffee from my Nespresso machine, take the dog out, and hug my husband. Then I wonder if I am having attention deficit because I forgot what I originally intended to do before I started making my coffee. Ever have that happen to you?

OK. Keep going Julie. BREATHE!! Grief is like a getting a new skin. A transformation into a new human being whose heart has been broken beyond repair. The pain just becomes part of everything. By osmosis grief enters every cell of your physical human existence and forms a new person. It is this new you, that supports how you cope. It is the new way you interpret the world. It is you transformed in how you exist in relationships.

As I have taken minute by minute, stepping along with this new " me " in my life after Daniel, figuring out what to do now has been really hard. I feel like a tree with no trunk and just a lot of branches floating in the wind. Nothing is grounded. Nothing is landing.

But here I am, and this is now episode 30 of a podcast project that I had hoped would help people who are caregivers, that has turned into "People who are caregivers whose person died".

Please let me know if there is anything I say that connects with you, or make suggestions to help me. I am so grateful to be here now. And I hope you are too!!!

Much Love,
Julie A. Hasselberger

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The Adapted Life Podcast

Season 3

Episode 29

4 months of grieving. This is a checking in, of sorts. Before I begin, I would like to reach out and let you know that if you are also grieving, and that this resonates with you, please let me know. Especially if you once had an overly full life of caregiving for someone who is now gone and you feel lost. Or just that you feel lost.

On the other side, having lost my son and experiencing this thing called grief, I’ve found myself in a crazy storm of adapting. Of surviving. Of figuring out just what the heck to do.

I am surrounded by blessings, but also by endless triggers that remind me of what life was like caring for Daniel. Most days I truly feel like I am losing touch with sanity. I still dissociate often. And this is where I am going through the motions, but do not feel like I am actually in my body, more like I am floating outside of it not connected to anything.

I share a list of some of the things I've been doing. I GOT THE NUMBERS WRONG IN THE RECORDING. PLEASE FORGIVE ME, FOCUS DOES NOT COME EASY THESE DAYS!

Trying. Trying to find light when it feels so dark. I talk often around here, about a vision that I had of Daniel…. In my vision, or dream, not sure, I saw his face and he was asking me if I could feel the light. “Can you feel the light Mom?” It was so real …. I woke up startled. So I focus on light. Light in the day. Light in the dark. Light.

Here is a poem I wrote about light. The kind of light I imagine that shines from Heaven.

Light

The simple act of visualizing

Brought me to a brighter light

Glimmering. Radiant, white almost

Streaking in from the Spring morning

When I woke I knew the sun was out

Walking the dogs I was warm

Yet after my space of meditation

During which my pain released its tears

My eyes opened to a different light

So shiny and strong it was so

That I took a picture of the window

Through which is was coming

The morning was no different

Than other mornings I saw

How could it be so much brighter now

Pulsating and casting white radiance

Then a message came to my tired heart

And I lay my hands on its beating

The light was not from the outside

It was coming straight from me.

May 7, 2024

Missing my Daniel every second.

My YouTube channel https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

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The Adapted Life Podcast

Season 3

Episode 28

A new season. A dark tunnel. A lonely place. A monsoon of tears. A red bird. A sun rise. A blanket. A box of tissue. A pile of cards. An empty room. The loss of a son. The weight of grief. One purple crocus. Sickness. A broken heart. A hole in my soul.

This, my friends is a very difficult conversation I am going to be having with you, with my self. Once again, everything has been traumatically changed, because we lost our precious son on January 12, 2024 to an unexpected sudden illness.

Think of this reality. I spent 26 years, accepting and adapting to life as a special needs mom and caregiver. I let go of my education and career, to be Daniel's champion.

We did everything possible to adapt and keep Daniel’s world in the best quality of life possible. Relationships with nurses, doctors, therapists, etc. to provide medical care interwoven with his daily life. I worked with DDS to set up a self managed vocational day program, where by not only could we bring resources to the house for Daniel, but I was also paid to be the vocational person getting paid to manage it all. It was a wonderful arrangement and it took years to get it established. We had just bought a new wheelchair van, it's sitting out in my driveway with only 2000 miles on it. We had summer of adventures planned for Daniel in his new van.

And now. Quiet.

Its all very painful.

And snap shot to today, which is Friday, April 5. It has been 84 days since that horrible January day.

Grief is my new tethered spirit. Grief, Love, Loss….

Everything, in my life, was interwoven with Daniel’s life.

So, this is the first episode, of Season 3. I’m a member of the “I lost a child” club. The grief club. The “I sacrificed my life to take care of my disabled son for 26 years and now he and that life have just abruptly stopped and disappeared forever” club.

Thanks for listening. I hope you will let me continue to share this journey I started into podcasting, and telling my story. Our story. I am sure there are many who are also grieving out there. To you, I say, I can only empathize and place my foot next to yours so we can walk the new path together.

Keep looking for those miracles and signs. They have been showing up for me. I know Daniel is telling me to “see the light”. So I shall.

You can connect with me via Facebook, Instagram, Youtube. My business address is:
PO BOX 3611 Newtown, CT 06470

Daniel's Special Art is still on ETSY and I will keep it alive in his memory.
I'm not sure what kind of things I will be putting out there, but I think it's so important to talk about what happens to caregivers in this kind of situation.

Much Love to you all.

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Episode 27

As caregiver for my son, who is 26 years old, I have had quite a journey. There have been times, when I felt completely lost and down, out of sync with who I am. Not even knowing what my core values are anymore, aside from the tough task of survival mode.

Part of self actualization, and striving towards a joyful life and soul purpose, is really taking stock of what your CORE VALUES are, and how your life is in alignment. It's the "taking a look" inward, that happens, and realizing that if you focus on becoming more aware what feels right, and what doesn't .

I talk about how I have not always been aware that things I was doing were not in alignment with who I was. As I have made changes, expansion in so many positive ways has happened or still is just beginning to happen.

I remain dedicated to caring for my son, of course. I talk about how he and I may be two separate lives, but I am LIVING FOR THE BOTH OF US. And, it makes so much sense for me to be living to my deepest souls purpose and core values, because I am a better Mom and caregiver to Daniel when I am deeply happy and fulfilled.

It may not be possible to do all of the things you desire, but you can take inventory and try to do less of what doesn't suit you, and more of what does.

I hope you enjoy the recording. It is my raw and heartfelt feelings after almost 26 years of being a caregiver for my beautiful son, and Mom to all of my beautiful kids.

I am very grateful for any ears that are listening.

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In this episode, I had been pondering the work I've been doing on self-love and releasing attachments. I asked myself, what does this mean to caregivers who carry with them a lifetime of changes that traumatically altered the course of their lives.

While I do believe that letting go of attachments that result in negative results, is important, we also can't always do it so easily. In accepting and sending love to these "attachments", we allow ourselves to heal, to learn from them, and to be aware and grateful for the positive ways our life has been enhanced by them. Even though, yes, great pain. Great grief.

So often as I work on myself, I find concepts that become a bit convoluted and challenging. This is is one of them. As special needs parents, caregivers, we are literally attached to our loved one, because we are responsible for keeping them alive.

The RSV Super Bowl Sunday Story. I told the story of the very beginning of my trauma with my son Daniel, when he was 8 weeks old. It is so fresh in my mind, and very hard to let go of. In telling the story, I found myself feeling such appreciation and love and empathy for younger Julie. and John. And what they went through. I sent that story some love. But I believe it will be forever a part of me and who I have become as a human.

I hope you enjoy the episode. If you have a story that you would like to tell, or would like me to read for you, feel free to email me at juliehasselberger@gmail.com

You can follow my you tube channel or instagram. Sending love from my adapted life here in Sandy Hook, CT. Keep moving forward with love and gratitude. XOXOXO

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Hello my adapting friends. Welcome to Episode 25 of The Adapted Life Podcast.

In this episode I wanted to talk about that word, health. And its sister "self-care". Taking care of our own health care needs is extremely complicated in so many ways. We literally have our lives intertwined with the health care and well being of our loved one. (s). So there in lies the puzzle, you really always have to put your self second in a sense. Getting to the point of taking your life back, in terms of making sure you are doing what you need to do, for you, is a huge step. Especially when you are 25 years into this journey like I am.

I wanted to encourage you, walk the walk with you, and let you know that I get how darn hard it is to just get your teeth cleaned or getting to your annual mammogram etc. I find that more of my appointments are missed, than actually attended. but I never give up. Most of power self empowerment has gained momentum as I have focused on loving myself, and realizing how much I am worth, and how much I matter.

So I hope you enjoy this little chat. Please feel free to find me on Facebook,
https://www.facebook.com/julie.hasselberger/

On Instagram
https://www.instagram.com

On YouTube
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDgAnd I would love it if you found time to share this podcast with someone who may need it.

Daniel and I have an art shop on Esty.com. It is called "Daniel's Special Art" and there we sell merchandise that displays our collaborative and adapted art experiments and projects. Would love to share that with you all. Its a fun way to create and build something with your loved one, if you enjoy art. Here is the link for the shop
https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

Thank you. I look forward to chatting again very soon. XOXOXO
Julie Hasselberger

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In this episode, I wanted to talk about finding space outside of caregiving to do something that your intuition is calling you to do.

As we know, carrying the weight of someone else's life and well being on our shoulders is a very heavy lift. But this doesn't negate your passion and desire to do something that brings you joy, outside of the realm of caregiving.

I have been working on pushing into my purpose, but sometimes I realize that I get slowed down, interrupted by life, and thrown off track. So I started asking myself why, kind of like the 5 why analysis I used to use back in the old days of being an HR manager in a manufacturing company.

I want you to know, from my heart, that you are not alone. I am not alone. We are on a special life journey, that sometimes feels like we are on a different planet.

I hope you are enjoying the "adapted life podcast" and I would love so much to hear from you.

You can find me on instagram @jhasselberger

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In this episode, I wanted to talk about finding space outside of caregiving to do something that your intuition is calling you to do.

I want you to know, from my heart, that you are not alone. I am not alone. We are on a special life journey, that sometimes feels like we are on a different planet.

I hope you are enjoying the "adapted life podcast" and I would love so much to hear from you.

You can find me on instagram @jhasselberger

or on YouTube at

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Website is

https://theadaptedlife.squarespace.com

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In this episode, I wanted to talk about my son's recent MRI, and what it really means to the entire big picture. And I guess, what it doesn't.

Thank you for being here, at the adapted life podcast. As with with my life, I am letting my intuitive thoughts and heart centered focus guide me as I unroll what "adapting" means to me. My hope is that someone out there will resonate with what it is like to be spending your life, keeping another precious human alive and cared for. In my case, it is my 25 year old son, who has a rare brain deformity.

"It was a virus, that started this whole ordeal. What the new neurology guy calls “the original injury”. A virus called Cytomegalovirus. Or CMV. If you have not heard of CMV, you should have. Especially if you have been pregnant at any point, or know someone who is. The CMV virus is a common virus, spread by direct contact with infectious body fluids, such as saliva, urine, tears, etc. CMV is typically unnoticed in healthy people, but it can life-threatening for the immunocompromised, and also newborn infants. If a pregnant mother, like I was, has no immunities to CMV and is infected, the unborn child also becomes infected. This is the tragedy. For me, it was somewhere around the end of my first trimester, like week 11-13. Daniels brain formation was attacked by the virus. Or, the “Original injury”.

"Every single day, its gratitude. I’m so thankful for the mri. For the medical teams. For the Medtronic rep who helped me. For coffee. For giggles. For a wheelchair repair. For a Sunshine filled morning. For friends. For family. For my own health. For music. For my treasures. For the ability to just let the problems not contain me. To know that I need to stop thinking so much, so that I can hear things. "

With all my love and gratitude, I wish you light and blessings on your own difficult journey.

Remember to have fun. See you next episode!

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In this episode I discuss how I experience this "tilt" reaction to having been overwhelmed with a sudden and traumatic need to care for aging family members, on top of my responsibility as a caregiver Mom to my medically complex and disabled adult son. The words "I'm tilted" kept popping into my mind, so I let it be there.

As a 50 something year old, it goes without saying that our elders are aging, and may need our help. In "non" caregiving mode, this is likely to be a bit easier to handle. I guess. But when I am already just too emotionally overwhelmed, and trauma hits, I can get to a point where I just need to shut off for awhile.

So I wanted to share a little bit of my recent experience as becoming a caregiver for more than just my son. While at the onset, it feels like it is just simply too much for me to manage, I am surprised at how much I am learning, and how focusing on letting go of fear has helped.

I don't function at my highest levels when other people vent their stress on me by harsh criticism, venting anger, and pushing me away. So I am always working on boundaries to not let it get to me. Remaining calm. Working on my highest self and what kind of positivity I am bringing into each moment.

We go through different phases and stages in journey as caregivers, and just as we think we are pretty good at everything having to do with our person, we can find ourselves needing to help people outside of that bubble too. There is an "AHHH I CAN'T DO THIS" period where fear sets in and we are too exhausted. So for me, I tend to need to shut down and accept that I can't push myself.

Having had my own long long term trauma from childhood, I've had to really come to terms with the coping strategies that work for me.

I end this talk with a brief little poem from Alex Elle that I saw on the internet.
I'm currently visiting my daughter in California, as I reference in the podcast.

I am blessed and grateful for all that I am, and all that I have coming. Thank you for sharing this journey. This podcast, my YouTube channel and our Etsy art shop (Daniel's Special Art) are my love projects.

Enjoy the episode friends.
Julie

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Episode 21
Season 2

In this episode, I am excited to be able to continue this journey with my listeners. Sharing an overview of what happened in 2022, and looking into the new year, with curiosity and intention to continue following my heart on this purposeful mission.

There are significant challenges facing caregivers that resonate with me, and I talk briefly about my own continuing challenge to find care for my son so that I can engage in my own work. This is a big crisis for caregivers, and I will dig deeper into this I'm sure as the year goes on.

At the end of this episode, I wrap with reading a short poem, from my collection that has been growing. I'm writing again. And that in itself is a testament to my own self actualization and discovery. I really enjoy being creative.

This is a community. I'm here to find a network, role models, suggestions, podcast guests, and anything that will help to bring some light on this adapted world we live in. Sometimes, I feel like I live on a different planet, so please help me to not feel so alone. I'm sure we have so much to share and do. Lets laugh, share, and expand.

Thank you for listening.

You can watch us on Youtube @jhasselberger
I'm on instagram, and Facebook too.

Daniel and I have our collaborative artwork featured in our little shop on Esty.com as well. It's a special treasure we are sharing.

Support the showhttps://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

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Hello everyone,

This is my 20 th episode. Recorded just around the time of my son's 25th birthday (November 22nd) I was so grateful and musing the concept of my past 25 years as a musical montage. I talk about a wonderful experience that I had, connecting with another mother of a 20 something year old disabled son. For caregivers who can rarely get a break, this was a big step. It is so easy to let community and connection slip away when you are a caregiver. Part of my transformation over the past few months has been to step out of my comfort zone, make new friends, re connect with old ones.

I also explained, in honor of my son Daniel, what our art shop is all about, and how it started. It is such a sweet endeavor, a collaboration that captures our moments of creativity, and blends them together. As a vocation for Daniel, we sell prints and merchandise on the shop, and proceeds go right back into Daniel's art supplies and other activities that enhance his life. The name of the shop is "Daniel's Special Art" on Etsy.

I know Christmas and the Holidays are fast approaching.

I am a Mom, building a social presence that is designed to be a way to help and encourage other people who have been dealt with extreme adversity, and now find themselves a caregiver for a loved one. And having to adapt and adjust every single aspect of their life. That's me.

Thanks for coming along on this journey. I hope you enjoy the episodes, and for anyone seeking to find guidance and encouragement for resilience, this also a great spot.

I look forward to so much more to come! Never stop trying! Sending my love and gratitude for this ability to share with you all this way.

YouTube Channel
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Daniel's Special Art Shop
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Support the showhttps://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

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In this episode, I wanted to share with my listeners, what I have gone through over the past 15 plus years trying to take care of my severely disabled son, using his state benefits and programs.

The puzzle I face, like so many other special needs parents and care givers, is having help in the home caring for the medically fragile person, so that they can in turn work, take care of themselves, provide for their families, and pursue their dreams.

I sacrificed my career many years ago, out of necessity, but that doesn't mean I should have been expected to do that forever. The state is supposed to provide my son with 14 hour nursing shifts 7 days a week. 100 hours. I'm lucky if even 40 hours in a week are covered.

It leaves me wondering if this broken system is even being looked at. Nursing shortages... etc. But the limits in who can provide the care, really stifle the ability to even try to find help for people, like me, who want to care for my loved one in my home, but also be able to live a life of purpose and make money for the future. I have no retirement. No savings. And I can't work due to the lack of consistency in my son's care.

I am working on creating wealth via my purpose and expertise in helping others.

But the whole... oh your Medicaid insurance will provide care for 100 weeks... is a pipe dream.

I am working very hard to create a life a purpose and passion for other people also struggling to manage this very complicated puzzle.

So I share, in a vulnerable way, how I often feel like in the big sense of community that no cares what happens to me, or my son Daniel. I need more help.

Adapting to the challenges of a loved one with severe special needs or medical complexities is not only a way to earn your angel wings, but it is also incredibly hard when you have a family to support and dreams and goals of your own. Dreams and goals outside of your role as care giver.

I am adapting, to being able to see a light towards a brighter world for caregivers, parents, friends, spouses, etc. who may not even know that they can still have joy in their realm, even when it feels like there is just no way.

But the state programs for the disabled are really not helping people. They have limited resources, promise everything, but never provide it. And it portrays to the most vulnerable people, that our government puts them at the bottom of the list.

Thank you for listening, and for coming on my adapted life journey.

please tune in continually. check out my you tube channel, which is a video journal of life as a caregiver (me) . And our really precious collaborative art shop, called "Daniel's Special Art"

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

Support the showhttps://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

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SELF-CARE.

ONE OF THE DREADED PLATITUDES PEOPLE THROW AT CAREGIVERS LIKE MYSELF, IS "YOU KNOW, YOU HAVE TO TAKE CARE OF YOURSELF TO BE A BETTER CAREGIVER FOR ....."

I don't share that opinion, because I see self-care as an extension of self-love for myself. Because I have to take care of my special needs needs son, is not the reason for self care, its a part of it, but it is so much more about me as an individual human being.

In this episode, my dear friends, I chat a bit about the latest things happening in my world with my 24 year old disabled son. I also recap and revisit the past few episodes where I shared my "tools for adapting" in the areas of meditation, gratitude, communication, and then I move into self care.

To be the best version of myself, has meant really taking steps to look inward. To stop the negative thoughts, and begin to nourish my soul with the love that it deserves. As my life continues to expand and be more abundant, as opposed to be stuck in scarcity, everything has shifted. Including the normal "self-care" people think of.

When you tell an exhausted special needs caregiver that if they don't take care of themselves, they won't be a good caregiver, it is a very insensitive thing to say. Life is exhausting. Painful. and at times there is no space for going to the gym and fixing super nutritious meals. Also, most of us caregivers ALREADY KNOW THAT WE SHOULD TAKE BETTER CARE OF OURSELVES. There is just so much more to it.

So I explain to my friends and listeners how I have brought myself to a place of true compassion and self-love. That taking care of me, is not about making a healthy robot to perform tasks, but more about enhancing life as whole. So much expands when abundance becomes our mindset. Self-care. Is about self. The most important part of your self, is your highest self, your soul, that inner energy that is truly the essence of you. I came to a realization, that it was incredibly powerful to be in stillness and listen gently to the silence. Without judgement, with love, and light. And this... has made me a better caregiver for myself first. Everyone else, including my son, receives the bonus prize of my positivity and strength.

I hope you will join us here often, or visit the YouTube channel "Julie Hasselberger" which is video journal of content, created to show the inside of life as a caregiver. Please find me on instagram, Facebook, and even at times, tik Tok

Here are the links.

YouTube Channel
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Daniel's Special Art (our shop)

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

Instagram
https://www.instagram.com/jhasselberger/

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In this episode I'm discussing the importance of the tool of communicating to others what your needs are, and asking for help. This is easy to say, but for so many of us, very hard to do. Even with the difficult challenge of taking care of a loved one, it can be hard to realize that you are not a superhero. Communicating takes on a very different meaning sometimes, for caregivers like me and others, because we become so accustomed to just trying to handle all of the burdens and stress.

I want to stress, that keeping everything inside, and living in fear of what others will think, is damaging. When we can seek help from beyond our fear, and develop an abundance mindset, things shift and stress is sometimes lifted. I have realized over the past few years that even though I have had a very difficult situation to manage, life is still abundant and wonderful.

Communicating and Asking for help is a way of opening up your heart to receiving and you just never know what could happen.

Thank you for joining me on this very vulnerable journey. I wasn't feeling well when I recorded this, but I pushed into it regardless. Because life is raw and real. I'm here for it.

Much love and gratitude to you all.

And please remember to check out "Daniel's Special Art Shop" on Etsy.

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

Support the show

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In this episode, I discuss my second "tool" in my tool kit for those dealing with extreme adversity and caregiving responsibilities. It is gratitude.

I explain that being grateful is an empowering way to stay centered and mindful. Practicing gratitude can be as creative as you are, but I enjoy writing daily into my gratitude journal.

Caregiving for a severely disabled loved one is a huge challenge. There are most definitely days when I don't feel like it. I don't feel grateful, I feel hurt, alone, anxious, frustrated... this is not a perfect science right?

But for me, nurturing a gratitude practice came hand in hand with seeking love and grace and acceptance for my situation in life.

Take a listen to the podcast, I hope something resonates with you.

I truly understand what caring for another human being's entire existence requires. Its massive. And I was faced with completely imploding and losing myself, or fighting back to find my way to joyful and purposeful living.

I am here to provide friendship, support, laughter, guidance, and connection.

So welcome again! I hope you are enjoying this podcast and will share it with someone who may also enjoy it.

If you would like to watch my son and I on you tube, here is the link,

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

You can find me on Facebook, on Instagram and our collaborative art shop.

Daniel's Special Art Shop (on Etsy.com)

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

Support the show

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In this episode I discuss how my journey to finding meditation has been pivotal in helping me to manage the storms and difficulties that being a caregiver has presented.

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In this episode, I share with listeners an inside look at just how complicated it is for me to bring my disabled son on vacation, or traveling anywhere for that matter.

May I first add, that as Daniel has aged and become a young adult, he is heavier and requires more assistance with mobility and transferring and caregiving in general.

If we are blessed to be able to take Daniel on a vacation, the planning is pretty much at a ridiculous level. I’ve listed out some of the biggies.

Making sure we have enough of his medication with us. Both his daily meds, his “PRN” meds, and his rescue seizure meds. Some of Daniel’s medications are considered controlled substances, so we can only fill them in person for 30 day amounts. This sometimes requires a special override from the physician, in order to have enough to travel with. So I have to make a list of the medications, the amount of days, and make sure we are not going to run out.
Supplies. Gathering together Daniel’s supplies, and I have a check list for this. Diapers, adult wipes, soft cloth bed pads, disposable bed pads, special skin creams and topical medications. Feeding pump bags, extensions, syringes, and a back up Mickey button g tube kit. Etc.
Clothing. Shoes, socks, AFOs. Shoes for the AFOs. Pool shoes.
Equipment: Wheelchair, Wheelchair tray, tool kit for wheelchair, special needs stroller, bath chair, nebulizer, respiratory vest, eye gaze computer, iPad, chargers for things that have chargers, and now we have to make sure we have a portable hoyer lift and threshold ramps.
If we are going to be able to swim in a pool, Daniel has special swim diapers and sun protection shirts that he needs, as well as a life jacket flotation device, and several other swim adaptable things he can use or play with.

We recently went to Cape Cod, where we are able to stay in a family members home. Knowing the layout, the entry way concerns (ie. Stairs ), and the height of the bed he will be in, is important. I bring bed risers and extra support pillows, because the bed doesn’t have articulation like his bed at home.

And that is just packing to go. I highly advise getting a clip board with a list that contains literally everything crucial to your special needs person on it. Then you can check it and review it for anything you miss.

The Travel part.

There is no easy way to travel with a severely disabled person.

Please consider visiting our you tube channel and art shop.

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

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In this episode, I discuss the challenges caregivers like myself face, with trying to get the care needed for their loved one. In my case, my son is medically fragile and requires nursing care every day.

He has state insurance that is approved for 112 hours a week, but he has never fully had those hours staff. Or the therapies staff that he also needs.

I discuss the topic of how we had to wait and finally be approved for CT Medicaid. And how once nursing care was approved, we were faced with...

Nursing agencies not being able to find nurses
State reimbursement wages are very low for nurses who do in home medical care, and this leaves people like my son, and myself vulnerable to not being able to have help.
The inherent struggle for a parent like myself, who needs to work and provide for the rest of her family, while also managing the care of her disabled loved one. It is an ENORMOUS challenge.
How I feel invisible to the rest of the world when I am told at the spur of the moment, sorry, no help for you today, and have to cancel everything that I had needed to do. This happens more often than not.
and how it is vital to maintaining a caregivers mental health, to try to stay positive, and not fall into self destructive patterns and depression. It can feel extremely frustrating to realize that you can't go to work, or on a date, or even take a shower some days because the help you rely on, just doesn't exist that day.

I want you to know, that I see you. I understand. I think this situation needs to be addressed and that people like myself should be able to engage in careers and building businesses, instead of having to give it all up because there is no help available. And this is help, that is promised to my son through his approved benefits and the hours the doctors have certified that he should have in the home care.

Adapting is building resilience, if we adapt positively with the right mindset for finding solutions and being receptive to abundance so that we can receive the help we are so loudly asking for.

I hope to connect with you. You can find me on instagram, Facebook, you tube, ETSY (Daniel's Special Art) Tik Tok .

LET'S CONNECT.

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April 29, 2022

CRISIS! NO FORMULA FOR MY GTUBE FED SON!

In this episode, I wanted to share with you my experience with the recent recall of specialized formula that we needed to feed our 24 year old disabled son. The recall, of Elecare Jr. and the subsequent supply chain crisis of baby formula and enteral g tube formula for adults and children, was extremely stressful.

We went through having to watch Daniel experience a dangerous allergic reaction to a substitute food that the doctor thought would be safe. I spent days calling, everywhere, to find any supply of any amino acid based formulas even similar to what Daniel had been using for many years.

Eventually we had to switch to a different type of formulation all together, a vegan whole food made nutrition with peptides, created for g tube feeding. That is called Kate Farms, and for now he appears to be tolerating it fairly well. We are watching every symptom so carefully.

When the solution to feeding a fragile person suddenly disappeared over night, I was left scrambling to find a solution. And there was nothing similar to the original formula available anywhere.

He isn't a person who you can just, try this, try that... because of extreme sensitivity.

Adapting. When the solution to the solution is not longer a solution, because both solutions are rendered not available.

it is my world, caring for my son. I am his LIFE giver, not just his CARE giver. I take this responsibility very seriously, with deep awe and gratitude because of the love I have for my beautiful son.

I am one of a beautiful collective of people like me, who for many reasons, are faced with adversity and challenge in caring for another person. In LIFE giving, and all that comes with it.

This is my adapted life story. It changes every second. I have learned to surf the waves of hypervigilence. And with deepest empathy and compassion, I want to reach out across the universe to all who need someone who gets it. I get it. I am here, in Connecticut, caring for my son facing joy and challenge each day, writing and podcasting about it, creating video content for others to watch and share about this adapted life, and finding ways to grow in purpose and passion.

DEVELOPING PURPOSE FROM RESILIENCE IN ADAPTING.

Thank you for listening.

WATCH US ON OUR YOUTUBE CHANNEL: PLEASE SUBSCRIBE TOO!
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

VISIT "DANIEL'S SPECIAL ART" ON ETSY.COM https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

Support the show (https://www.patreon.com/juliehasselberger)

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In this episode, I share with listeners some of the responses I have heard from other caregivers/special needs parents that are the biggest challenges they face caring for their loved one or child.

As much as this life feels isolating and lonely, there is some comfort in knowing that there is a connective to the issues that trouble our hearts.

In my quest for answering the question, "How can I (as just me) help and encourage others who are struggling through this difficult daily adapting to ever constant difficulties.?"

I think simply by stating what I have done, throughout 24 years of caring for my severely disabled son, is in itself helpful.

I am still working on developing my purpose and vision for expanding this community, but I want to encourage you to find even one little spark, one thing that brings you joy, and find a small piece of time to do it. In a previous episode I wrote about the cracks that I slip into, and I believe we all may these moments if we are open to them.

I am grateful to be here. Please visit Daniel's Special Art Shop on Etsy.com to help support our channel and store.

The Adapted life is a place where anyone who has experienced extreme adversity, can find community and encouragement to hang onto you. Hope. Laughter. Sharing. and Love.

Caregivers, or simply anyone. A Birdseye view into the home of a caregiver Mom (me) who has been adapting and surviving, and caring for a very special young man named Daniel.

Visit the shop at:

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

Visit my YouTube channel (video blog) we welcome new subscribers!
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Support the show (https://www.patreon.com/juliehasselberger)

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In this episode, I talk about something that I've written about considerably. As a caregiver, I have so much of me devoted to this role. But the true essence of who I am, what my souls true purpose is, is far greater than just my role as a caregiver, or even a mother.

I've been cultivating time, however briefly, where I can slip away into the cracks and work on self care, or my own creative endeavors. I find time to engage in transformational meditation courses or to upload a new episode here.

Sometimes I just slip away and try to find ways to not only bring purpose and joy to others, but also to provide a source of income for my family. (since I am unable to hold a full time job outside of the house given the intense and stressful situation with taking care of my disabled 24 year old son)

Please come along, as this veteran special needs Mom (I am 56 years old) talks about the look back at how I got to where I am today.

This journey to create the Adapted Life, has been so incredibly amazing. And also, very very difficult. I gave up my career, my aspirations, and for a long time, I buried my identity. As I say, I put it in a bin, in the basement, behind the Christmas decorations.

I created the Adapted Life Podcast, as a Community for everyone, but especially for those of us who are devoting our lives to being caregivers. For those of us who have faced unforeseen extreme adversity that has changed the life we once envisioned for ourselves.

Welcome to my adapted life. I'm so glad you are here.

For more from Julie Hasselberger, tune into her YouTube channel at Julie Hasselberger
, or instagram @jhasselberger
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Support the show (https://www.patreon.com/juliehasselberger)

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episode 10.

The Adapted Life Podcast

Life in my shoes. Recovering from grief. Why my podcast matters.

My world was crushed on January 23, 2022 when my mother passed away suddenly. It has taken me a month, but I am finally able to talk about it. I share with listeners why creating and building this podcast is so important.

Being a caregiver is hard. But it is also full of wonderful blessings and joy. I am here to help and encourage others.

I want to express to anyone who is listening, that in this creation of Julie the caregiver, I have learned so many things about myself. I heard a quote today that said, “it is truly in helping others that we discover who we really are as people” .

That is the essence of why I am podcasting. I am truly still discovering all of the ways that this will bloom. As I open up my heart to abundance and receiving, things are just flowing to me. When I get side tracked, as I have since something tragic happened in January, its as if a force inside my heart pulls me back here to this space where the ideas begin to flow again.

The adapted life is a place of growth. A place for kindness. A place for comfort. A place to feel supported. A shoulder to cry on. An encouragement during a rotten time. A place to help eachother. A place to grow. A place to create. A place for anyone who wants to understand the REAL meaning of “caregiver”. The adapted life podcast, is, in itself, a caregiver. This is why I am here. As I continue to manage the complex life of my medically fragile son, I am deepening my soul and finding new things about myself every day. Like how to come back from being so profoundly sad, and find purpose in that sadness.

HERE IS THE LINK FOR DANIEL'S SPECIAL ART SHOP ON ETSY...
https://www.etsy.com/shop/DanielsSpecialArt/edit?ref=seller-platform-mcnav

Support the show (https://www.patreon.com/juliehasselberger)

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In this episode, I discuss what my life entails as a 55 year old caregiver/Mom for my severely disabled son. It has evolved into caregiving with resilience, but the journey has not been easy. Please join me, in my adapted life, as I share how I've made it this far, and expand into ways that we can connect in the future. For this episode, I hope to begin to illustrate in your mind, what happens when your child is too disabled to ever live independently. How to cope and deal with the challenges, and how to develop yourself in the process.

I am thrilled to be podcasting, because I have visualized this for years.

You can learn more about us on my YouTube channel, https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

I am hoping to find sponsorship opportunities

Support the show (https://www.patreon.com/juliehasselberger)

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The Adapted Life Podcast

Season 1

Episode 7

I did some reflection in this episode, of 4 stories over 24 years, where the kindness and generosity of others, helped us with our needs for our disabled son.

I would like to share some memories with you all, because as you can imagine, after 24 years of being Daniel’s Mom, I have an incredible library in my brain of the best and worst, experiences.

As I have been learning so much in my meditation practice about abundance and the law of attraction, I realize how vital it has been for me to hang onto my positive and open attitude. Gratitude has always been a priority for me. I do not feel guilty about gifts that come from the goodness of others, because I am grateful, and joyful.

Today is December 3, 2021. Daniel is downstairs with his nurse, my husband is working from home, I am sitting here in my home office created by me, out of a vision of me podcasting, about adapted life. And I am literally stepping into what I manifested.

Daniel still has major medical issues that I am managing. We are still juggling financially. Our needs for our son, are even greater than when he was a child, the lack of freedom and being 100% on call and a caregiver for my son can feel very heavy, but my mindset is shifting.

When I look back, over the last 24 years, I see a bumpy twisty turning road of hardship, fear, pain, sadness, lack, depression, exhaustion, isolation, confusion, inconsistency… which also was laden with laughter, kindness, appreciation, amazement, love, hugs, patience, and generosity. How does someone survive such a turbulent world of uncertainty? Somehow, I am here to tell you, that you can. It is possible. I am figuring it out. I am trying to share my research, so to speak, because in the vast imperfection of my life as a special needs Mom, I have found the light that I need to adapt and change course when I need to.

That is how I found myself on YouTube. That is how I discovered that I wanted a podcast about how “effing” hard it is for all of you special needs parents out there. I get it. I am it. I changed the diapers of 24 year old this morning and checked his vital signs before taking a sip of coffee. I sleep with my ring camera alerts on full volume. Just in case. And I have found myself discovering that through all of these years, I am yet to fully discover my true purpose. I think I am very close. And it feels amazing.

I want to connect with you. I want you to know, that you are not alone. All of you Moms, and Dads and caregivers, feeling like you are stuck in your house, not knowing how the heck you are going to get all the things done for your loved one, not sleeping, having medical issues yourself because of depression and anxiety, and the really hard mental acceptance that your in this for the long haul. I am here too. We are adapting together.

my YouTube Channel
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Daniel's Special Art Shop
https://www.etsy.com/your/shops/DanielsSpecialArt/tools/listings

Support the show (https://www.patreon.com/juliehasselberger)

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Episode 6 Becoming A warrior

In this episode I share my experience as a special needs Mom who pushed herself into become a warrior for the things that her severely disabled son needed.

From education to health care benefits and nursing, nothing has come without a significant amount advocacy and fighting.

There is very little help out there for new parents trying to figure out which direction to turn when accessing special help, special services, special education etc for their disabled and medically fragile child.

For me, I learned the hard way that centralized and organized care, research and managing was not done for you. I had to step out of my career aspirations, and into my sons care and management of his care, because it is more than a full time job. And it is not easy to navigate the complicated world of special needs care and all that comes with it.

I was a Mom of three children, struggling to figure out how to give my family all of me, when basically 90% of me was invested into my son Daniel.

My early years with my kids, were a whirlwind of trying to leave my career dreams behind, while also trying to make sure they all were safe and happy.

Today, my son Daniel is 23 years old, turning 24 on November 22, 2021. And my daughter just found out she passed the California Bar exam, My youngest Son is extremely gifted and studying music and performance at Berklee College of Music, I have been married to my husband and best friend for 29 years, and Daniel is here with me. I am still his advocate, managing his complexities and things are still very difficult.

I have adapted, and recreated myself over and over. And through podcasting, video editing, and writing, I am stepping into a new adventure of a different kind of vulnerability.

Please enjoy the episode. And come back for episode 7, where I will start a series of short stories based on some of the most incredibly wonderful moments, and the most traumatic moments of my adapted life.

Watch us on YouTube, at

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Visit Daniel's Special Art Shop at

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

Support the show (https://www.patreon.com/juliehasselberger)

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In this episode I share how finding support groups in my community and on line was so vital during the early years of our family growth. I researched and found many organizations that provided support in the form of fellowship, and getting together, as well as support financially.

It was such an incredible help when my kids were small, because they learned that they were not alone in this world of being siblings of a severely disabled brother. The lessons in inclusivity were many.

Special needs parents have so many questions. There is power in large numbers in terms of sharing resources and ideas. There is no "manual" or "website" you can go to find all of the ways you can find support, financially or otherwise. So the value of support groups is without a doubt how I learned much of what I learned in order to get things for my son.

I hope everyone will continue to tune in, and as I grow in this podcast, I will continue to share encouragement and stories. I am here, because I believe that my soul's purpose is linked to my skills as a special needs Mom and more so my skills at adapting and helping others in the process.

Some of the organizations by name, that have been incredibly helpful for us are by name:

The Win Win foundation (no longer exists)
The Scotty Fund (Bethel CT)
The Molly Ann Tango Foundation
The F.U.N. Group (families united in Newtown)
Make a wish
Dream Come True Western Connecticut
Walnut Hill Community Church
The CT Department of Disability Services

just to name a few.

I am the Mom of a severely disabled and medically fragile son, I am his caregiver, and his Window to the world. He lights up my heart with his gentle smile and I am on a new adventure now, sharing our journey with others. So many things are possible.

Severe adversity may crumble your world, but in rebuilding, everything is full of new possibility.

Julie's You Tube Channel
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

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Music by Epidemic Sound

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The Adapted Life

Season 1, Episode 4

Discussed what happens when a career working Mom (me) suddenly has to leave her career to care for a severely disabled medically fragile child.

From Career to “Caregiver /Stay at home Mom”

Welcome back friends. I think many women go through identity crisis when they have children. The life of “its all about me” becomes the life of “its all about my child”. This is pretty normal, and a big challenge for Moms to overcome.

For me, I had always planned on being a working Mom, I completed my MBA in 1995 and walked commencement 3 months pregnant. I loved the field of human resources, and pursued vigorously everything I could learn about the field. I found myself on a career track for a future in Human Resources, hoping to specialize in training and development.

But, I walked away from working full time when my son needed me. I resisted for a few years, but as Daniel’s needs increased, and the full extent of his disability became apparent, I knew that I could not walk in both worlds. I left my career behind. And our family could not afford that.

So how does a young Mom go from working Mom, active, and involved in work and community, to Mom of severely disabled child with multiple medical issues. It was like I walked through a door to a completely unknown alternate universe. How? Well…. I am sorry to say, there is literally no instructions for this task. Because it all depends on how you build resilience.

My short answer to how? Is, you adapt. Everyday, every minute as life hurls unknown questions at you.

So I tried and tried, to adapt. To figure out ways to maybe work part time, and still manage everything at home.

Summary… So. I left my full time career in human resources, jumped head first into a world of parenting a severely disabled son, and my other two children. Struggled with financial problems. Tried to make money while also being caregiver Mom. Most failed.

And somehow, I just continually adapted. Learning, researching, asking for help, re inventing myself, starting over, enjoying watching my babies grow up.

But in my soul I still long for something more. Some way of creating a purpose and a passion, and giving it back to the universe. And You. And here I am. I feel like I am standing on side of a cliff about to take a dive into deep beautiful blue water. Exhilarated and terrified.

Stay home caregiver Julie was always so much more deep inside. She is now ready to come out, and help others on their journey after they too walk through the door into the parallel universe of adapting to extreme adversity.

How does a young Mom adapt to being a Mom of a disabled child and making it work with everything else? You adapt. In the process of adapting, you discover who you really are.

YouTube Channel

https://www.youtube.com/user/jhasselberger/featured

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In this episode, I discuss how early in our journey as special needs parents, we realized we needed help from a mental health perspective. Once I began healing from my own trauma, I started seeking out others who were like us. We searched for and found support groups locally, and I created my own group on Facebook, which at this time was a brand new thing. The group is called "Polymicrogyria Support". Today, in 2021 there are over 2500 families sharing and supporting eachother on this group.

Adapting is hard, and as a young Mom with a baby/child who has been diagnosed with life threatening disabilities, it was very hard to navigate the world of my typical children at the same time. I wanted to be the best in both worlds, but most of the time I felt isolated and odd.

Maybe you know someone who is a caregiver for a disabled or medically fragile child/sibling/friend etc. You may be here, because you have connected with me already on this topic. I am so excited to have you here.

I am going to continue sharing my stories of adapting, offering support and encouragement, and sharing my own struggles and fears, some of which are literally happening as I type this.

This is the adapted life podcast. Building resiliency as I adapt my life around the needs of my amazing but very medically fragile 23 year old son Daniel.

You can find me on YouTube, where I have a Vlog, or video journal of our life.

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

I welcome input and feedback, and sponsorship opportunities. Learning and building here, with the goal of greater encouragement and support for those who need to learn how to adapt, and that a beautiful amazing life is possible, despite the hardships and trauma you have been dealt.

May you have a Blessed day, lots of smiles, and happy adapting.

for business inquiries,

jhasselberger@snet.net

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Welcome to the "Adapted Life Podcast"

A place for everyone. Designed to be a community of people who have been faced with such extreme adversity that it caused them to change everything in their life, unexpectedly, and the fascinating process of we adapted and build resilience, even when at first everything seems so hopeless. I am SO excited to finally launch myself into vulnerability. Im adapting as a person just by stepping out on faith, with you.

The place in between normal and not normal.
In Episode two, I discuss the early years with my special needs son and how I literally tossed the "baby book" into the trash can. I found that I was going through parenting in a strange lonely place in between parenting a normal healthy 2 year old daughter and then the unchartered territories of a son with a rare brain deformation.

Adapting and learning. I have been doing this for 23 years now, as we have re engineered our life around taking care of this special young man, Daniel, while also embracing all of the care and love for our family as a whole.

I felt very early on, that something was growing and developing within me. And I truly expect that great things are going to happen.

You can watch all of us Hasselbergers on:

YouTube Channel, "Julie Hasselberger" and here is the link :
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Instagram
https://www.instagram.com/jhasselberger/

Daniel's Special Art shop on Etsy
https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

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This is an exciting work in progress! I have a Youtube Vlog channel, called "Julie Hasselberger" and have been planning the start of a podcast for years. So here I am. And welcome friends. This may be messy, but I am ready to go.

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Welcome Everyone! My name is Julie Hasselberger, and this is the “adapted life Podcast!”

In this episode I lay some foundation, and tell the story about the early years with my medically fragile disabled son.

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I introduce myself, Julie Hasselberger, with a brief explanation of what the podcast is.

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Welcome Everyone! My name is Julie Hasselberger, and this is the “adapted life Podcast!”

I have created this podcast, because there are many of you out there, who have faced life altering challenges and adversity. Adversity which can permantly alter the life you once envisioned.

For me? It was when my son, in 1998, was diagnosed with devastating disabilities. Everything changed.

I am here now, to bring encouragement, compassion, support, community and connection.

I have often referred to my life as being in a constant state of adapting, as unforseen challenge and crisis seem to hit me and push me off course. Being a special needs parent, is truly like that.

My life as a Mother to my 3 kids, a wife to my husband of 28 years, and a Professional with an MBA were altered drastically over the years because of my son’s medical fragility and severe disabilities.

This podcast is a journey into how I actually have learned to adapt, develop resiliency, and created a wonderful life far better than I could have ever imagined when all I could see is crisis.

I am starting here, with you. This is a place of compassion, laughter, and learning.

So thank you for cheering me on, as I am stepping out with complete vulnerability into this new adventure.

This is My Adapted Life. And I hope it will be yours too.

Support the show (https://www.patreon.com/juliehasselberger)

The Adapted Life: Recent Episodes

Julie Hasselberger