Send me a Text MessageThe Adapted Life Podcast Season 3 Episode 28A 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 06470Daniel'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. Support the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageEpisode 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.   Support the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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.  XOXOXOhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDgSupport the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageHello 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.comOn 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-mcnavThank you.   I look forward to chatting again very soon.  XOXOXO Julie Hasselberger Support the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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 @jhasselbergeror on YouTube at https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDgWebsite is https://theadaptedlife.squarespace.comSupport the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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! Watch us on YouTube https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDgInstagram https://www.instagram.com/Website https://www.theadaptedlife.com/Support the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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 Support the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageEpisode 21Season 2In 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 Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageHello 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_fJvzDgDaniel's Special Art Shop https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDgSupport the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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_fJvzDghttps://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavSupport the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageSELF-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 TokHere are the links. YouTube Channel https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDgDaniel's Special Art  (our shop) https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavInstagramhttps://www.instagram.com/jhasselberger/Support the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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-mcnavSupport the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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_fJvzDgYou 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-mcnavSupport the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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. Support the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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, traveling and staying  is pretty much at a ridiculous level of being prepared. In this episode I share the challenge we face with traveling with our son who is severely disabled. We have never taken a vacation without Daniel, and work really hard to include him.  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_fJvzDgArt Shop https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavSupport the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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...1. Nursing agencies not being able to find nurses 2. 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. 3. 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. 4. 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. 5. 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. Support the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageApril 29, 2022CRISIS! 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_fJvzDgVISIT "DANIEL'S SPECIAL ART" ON ETSY.COM https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavSupport the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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-mcnavVisit my YouTube channel (video blog)   we welcome new subscribers! https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDgSupport the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text MessageIn 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_fJvzDgSupport the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Send me a Text Messageepisode 10. The Adapted Life PodcastLife 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-mcnavSupport the Show.https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnavhttps://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg