So Much Heavy

2-26-2022

When you are already fragile, so many times things will make the exhaustion of grief that much heavier.  These times: Covid, so much division in our country, then the Ukraine’s crisis.  A mentor passes away and yet another special needs family’s child passes away. Today I light candles, meditate, listen to music, rest. So weary.

A reminder that self-care can look like many things. I do it small. Take breaths. Step outside on this bright blue with sparkly snow on the ground day. I watch the birds. Write what I can. When Sophie died I couldn’t write. It bothered me more than I’d like to admit. I’d written for years. Some people journal. I found that I couldn’t. In grief you find your way to grace. At least I did with small steps. Grief looks differently on everyone.

As I write this the song, Lean on Me, by Bill Withers starts playing.

Sometimes in our lives
We all have pain
We all have sorrow

But if we are wise
We know that there’s always tomorrow

Lean on me
When you’re not strong
And I’ll be your friend
I’ll help you carry on…

For it won’t be long
Till I’m gonna need somebody to lean on

Please swallow your pride
If I have things you need to borrow

For no one can fill
Those of your needs that you won’t let show

You just call on me brother when you need a hand
We all need somebody to lean on

I just might have a problem that you’ll understand
We all need somebody to lean on

Lean on me
When you’re not strong
And I’ll be your friend
I’ll help you carry on…

For it won’t be long
Till I’m gonna need somebody to lean on

We all need someone to Lean on. Let it be received with grace and no judgement.

If you are grieving, please go easy on you.

Jody

To Life…And Death

Ah Life.

Just when you feel like the heavy has moved to a lighter page, something hits you.  It could be a reminder of your loved one who is now gone, or it could be the tsunami of the death of a friend. Recently I celebrated the life of a special needs Mom who was so much more than that.  She brought my YaYas together- a small group of Moms who have kids with special needs. This connection has been my lifeline for almost 30 years. It was Sam who brought us into a small room while our kids were getting therapy so that we could share stories, bond, and give advice to each other. We held each other when things got bad, we screamed into the phone when we were on the way yet again to the hospital.

So much so, that we took very short trips for years to get a break (that was a feat in itself,) and to this day we try to get together once a month.

We YaYas have so much to be grateful for with the knowledge that Sam shared with us.  We pass it down as best we can to other caregivers. She will be missed on so many levels.

So we toasted our wine (her favorite beverage) and ate amazing recipes she collected on her social media. All in honor of her.  Salute!

My YaYas

Grief Teachers

I have been fortunate to connect with some amazing grief teachers.  They have given me insight into what would help me, what would help others. I am sharing links to these wisdom-sharers. 

But the best teachers are those I have lost. My grandparents, my parents, relatives, close friends and most especially my daughter, Sophie. Some had long lives, full lives, some had shortened lives.  I was lucky enough to know these souls. The compounding of these losses are a part of my soul. Some deaths were surprises or traumatic. Some were expected, but hard to accept. Each one leaves me with a lesson and a grief journey that is unique as the person that lived. I believe that the keeping of their memory alive is part of the job of this living.

I was introduced to Kelly Grosklags soon after Sophie died. My dear friend, Liz, sent me her book, A Comforted Heart, a book originally written to those dealing with cancer diagnosis, living and dying. But it is so much more. It’s a small book that you can read in bites. Something that is easier for caregivers and those who are dealing with diagnosis, end of life and beyond when there is so little time to read and process.

This led to a connection with Kelly and her FB page and podcast, Conversations with Kelly. Her writing is full of compassion and a wealth of information. She maintains a website, www.conversationswithkelly.com.  I was then introduced through her to Bryan Piatt, a former news anchor who along with Kelly talks about mental health and healing. He is the Co-Founder of the Refresh Network, Yoga teacher and Breathwork Facilitator who just began his own podcast, Take What Serves, Leave the Rest.  During covid times they held FB lives for their grief/mental health communities which was of huge comfort to me, and continues to give me snippets of wisdom in this grief journey.  I took their Returning to Ourselves Sessions, a global group on Zoom during the covid pause. Wonderful lessons on love, grief, bereavement, mental health and finding others who are walking this new path. They are my mentors.    

From there I became interested in bereavement and grief, not only for myself, but for helping others.  Since I was a full-time caregiver for 25 years, my focus is on caregivers, but just like Kelly’s book, it will hopefully connect with anyone who is moving in grief and beyond.

In another segment, I will talk about my training with David Kessler. In the meantime, I wish you soft landings while you follow me. This is not an easy life, but it is rich with wisdom and grace if you let it.

Caregiver Toolkit/Tips

In this section you’ll find words of wisdom from myself and other caregivers.  I’m hoping to give you tools to make you and your loved one’s life easier and to find links to others who walk in similar shoes.

I was a caregiver to my medically fragile daughter, Sophie, for 25 years. There were so many times I wished for wisdom when all that was there for me was the feeling of traveling alone.  Her rare disorder created some of this aloneness, but prior to the internet it was a lonely journey.

Let’s change that landscape together. If you are a caregiver seeking some wisdom, I hope you find it here. I welcome feedback and your own links to share.  My biggest goal is to find quick, easy tools for caregivers to take care of themselves. This is not intended for medical advice, to bitch about your horrible life, or that you found religion.  Fill your cup. Thanks for stopping by.

About Grief

We all are exposed to death at some point. It is a part of the living to experience this. I have numerous ties to the grief community.  I am blessed with friends who understand that it is a journey that is not linear. Grief has been analyzed and re-analyzed for many years.  There are many forms of grief, and in my opinion everyone experiences it differently, and on their own timeline.

On this link I hope to add information and share my favorite links, blogs, quotes, and people from the grief community.

Whether you come to seek information or comfort, know that you are not alone.

Jody

Moving Forward

Paying the Bills.

Prior to Covid, I was an aide/sub teacher at the local high school.  Our local school took me on when I was able to find the energy and time to work while Sophie was in the last years of her life.  I got divorced. I needed an income.  These wonderful people took me in.  I have a lot of experience in teaching and helping special needs students as I ran the educational program for Sophie for many years.  While this is not my passion, this skill has helped me pay my bills while I work on my passion.  These people have helped me through some of the toughest years of my life and provided for my family. 

Once again, I find myself as an aide/sub.  As I take classes in grief education, bereavement, and working on myself to help others, this gives me the grace to learn and prepare. These educators have given me a work family and income to continue to Walk On.  I am forever in their debt.

It’s been a tough few years, especially in the education and medical fields.  Hug a teacher when you can safely. Elbow or fist bump a nurse or doctor. Most importantly thank them for their persistence, strength and love of their career choices. A little grace to everyone you meet.

Those First Steps…

I’m retired… Not Really.

This is difficult to write.  How do you get friends, family, even strangers to understand that after 25 years of caregiving I am done with caregiving?  I need to make a living, like seriously, some thing that pays the bills and has benefits. I know this. But 25 years of caregiving without a paycheck is not what businesses want to see on a resume.

So I get creative on my resume.  I give deep thought as to what I really want to be. What I want to contribute to the world, what would feed me now. I have been fortunate to be an aide/sub at the local high school. These wonderful people have kept me afloat mentally, physically, and financially for a few years now. So grateful.

People freak a bit when I say I am interested in Hospice, in the journey of Death and Dying, in Grief and Bereavement. The connections I have made in the Grief Community leads me there- I want to help the caregivers as they journey through this part of living, dying, and afterwards with their loved ones. The western world for the most part does a bad job of helping in this portion of living.

Having been a part of the medically fragile world for so long, I see so many gaps in the care of the caregiver.  They are a stubborn group, facing unimaginable stress and trauma, but will do anything for their loved one’s peace.  They think of themselves last- even though they’ve been told a million times self-care is important, to put their mask on 1st, you can’t drink from an empty vessel, you can’t go on this way-what happens when you can’t do it anymore? But they do.  I did.  My body is completely falling apart.  I’m sure my mind is not far behind.

After the death of my sweet daughter, I spent time and energy trying to understand this journey.  I gave myself grace for a time, then out of necessity I worked.  Then Covid hit. Another pause. In this pause I spent a lot of inner work to figure out what I wanted to do. I volunteered at a Hospice, learning the ins and outs of the business as best I could from “teachers” who had walked my path before.

I am a Certified Grief Educator through the program by David Kessler. That name may sound familiar- he worked with Dr. Elizabeth Kubler-Ross. Dr. Kubler-Ross wrote a number of books, one of her most known is “On Death and Dying” and the 5 stages of death.  The stages have been changed and analyzed over the years; most importantly David Kessler has reiterated that the stages are not linear.  David has written books with Dr. Kubler-Ross, and since her death has gone on to be a prolific writer, speaker, and wisdom sharer regarding grief, trauma, and the dying.

I’m now an ordained Minister through the Universal Life Church Ministries. What does that mean? It means I can marry people, reside over ceremonies, and follow my desire to help people. While this is a future ability, it is not my current focus. I wish to help caregivers.  

I’ve worn many hats on this journey.  I’ve been a caregiver, yes, but so much more.  I’ve been a doctor/nurse, a teacher, an advocate, a mentor, a writer, a “McGyver”, a photographer, a holder of memories, an encourager and mostly a Mom. Time to take these skills to a new level.