Caring for Yourself When Your Heart is Breaking

Tips and Stories Along the Grief and Caregiving Journey

Thank you for joining me in The Pause Place. Holding space for you in grief, feelings of loss, and your journey toward hope.

For more on my story, read The Pause Place.

It feels important to say that this is my story as I understand it. I’m cognizant and respectful of my family’s journey. These are my feelings on my grief and caregiving.

When your child has been suddenly hurt, has a chronic disease, or life-threatening diagnosis, your body and mind go into crisis mode. Cortisol levels rise, you’re in fight or flight mode. That fear is like a new parent listening to make sure their child still breathes as they sleep. It's no wonder. That child is inextricably tied to you. Whether by DNA or soul threads. That child chose you to bring them through life. Perhaps you chose each other but you both agreed to the contract.

My son, Nick, and I first day of school 2007 (photo by author)

My son, Nick, chose me to carry him through this journey. We have been here before in different roles and choices. But always one of us leaves too soon. It’s been a lesson we’ve been learning for a long time. 

When Nick was diagnosed with leukemia at age 12, I was shocked. But I wasn't. I always had this fear that he'd get cancer. At age 57, my dad died after two bouts of throat cancer and then lung cancer.  Nick was a replica of my dad in his physical appearance, personality, and energy.

Did my fear fuel this reality?

I fed my kids homemade meals, organic meats. They did not eat at Mcdonald's, they did not have Twinkies and Susie Q's and sugared cereals like I did as a child. I used organic cleaners and gave them all my love.

Nick and I are at the Bronx Zoo for a school field trip (Photo by author)

Did I fail as a mother?

How could I not protect my son?

In addition to medicine, I thought my love would be the antidote to the poison in his body. Nothing else existed except healing Nick. His CaringBridge website to update people was called Nick Healed. I quit my job as a magazine editor. I went to every treatment, stayed with him in the hospital. Sometimes my husband, Luke, would stay but I'd pepper him with questions.

Watching my son struggle with so much pain cracked my heart.

Nick had every possible allergic reaction and side effect to the chemotherapy. Some that they had never even seen before. He was rushed to the hospital multiple times with an anaphylactic reaction.

Care for me was off the table.

September is an emotional month for me as we were in the hospital for a large part of it. I remember one time we had a 2-bed room to ourselves. I slept in the other bed. My allergies were horrendous as they always are in the fall. I took Sudafed so that I would be clear for my son when he woke up. This is the first time I had an allergic reaction to it. Chest pain. Shortness of breath. Stomach cramps. No one had yet come in to check on Nick. If they had, they would have rushed me to the emergency room. I didn't want to pull attention away from my son. Plus, I needed to be here, not somewhere else getting medical treatment.

I suffered through it.

During these long bouts of hospital stays, I cried. I was with my child but I was lonely. I missed our family together. I simply wanted someone to wax my eyebrows. I wanted to shower in my own bathroom.

My heart broke watching my healthy, muscular, brilliant son waste away losing almost 100 pounds. Covered in rashes, he had patchy hair and haunted eyes. I would have suffered 1000 times over to relieve him of his pain and give him back his life.

I felt I'd failed as a parent. 

My need for control was a way to somehow change the outcome of his situation. My lack or denial of care seemed like self-punishment for me because my son should have been well. It's not logical. It’s emotional. 

Looking back, I see that there is a serious need for mental health care for families dealing with cancer and life-threatening illnesses.

This revelation came years later–16 years to be exact. It had been a wisp of a thought that I would tamp down, not willing to forgive myself.

If I had taken some time for myself, would that have made a difference? 

I’ll never know and it’s no longer a question I flog myself over.

It was a four-month shit show. A whirlwind of crap being thrown at us as we slipped and fell in it. We didn't have time to breathe. Some families have children in treatment and remission and relapse for years. They're underwater for what feels like a lifetime. 

A marathon of epic proportions.

Maybe I would have figured it out or had been forced to then.

What I do know is that care in the midst of chaos would have given me something to stand on when I lost Nick.

Instead, I spiraled into despair, self blame, emotional and numbing eating, overworking myself to NOT FEEL PAIN.

A year ago Nick’s 15th anniversary of his passing was coming in October. I had forgiven myself through a lot of self reflection journaling and other techniques that I'll write about at a different time. I had created a life of love and light with my husband and sons (one in a physical way and the other in a spiritual way).

I still was on this journey of healing because it never ends. 

Then my 84-year-old mom fell.

She broke her femur and knee replacement. Had a concussion. Bruising. Trauma. Once again I was thrust into chaotic crisis mode.

I have been taking my mom to her doctor appointments for years, balancing a writing and teaching career, my family, and healing myself.

The injuries were life-threatening, so I stopped writing, canceled classes, trips. My siblings and I took turns staying overnight with her at the hospital-watchful that they didn't make a mistake. And there were mistakes. I was in hypervigilant mode through her surgery and rehab, visiting every day.

Who had time for exercise? 

I had to be there. I knew all her information. I handled a lot on my own, often because it was easier. 

Then my mom was discharged. Her apartment wasn't ready for her to move back in for various reasons. She came to my house. It was like a tornado and hurricane but no one had cleaned up the shit from the show 15 years ago. My younger sister and I were in the trenches, drowning in the care of our mother.

No self-care. No family time.

Then in October 2023, I got COVID for the first time and it bowled me over. My mom was whisked to her apartment with 24 hour care from my three siblings. Eventually I got back to caring for her but something had shifted in me. 

I couldn't care for her to the detriment of myself anymore. I wasn't able to give her all of me because there wasn't going to be any of me left. But I didn't know how to create that balance or boundaries that could support that. 

Memories of Nick’s sad journey overwhelmed me. So much flooded back cracking my heart again. 

I didn't feel I was allowed or deserved to create the boundaries that would give me some breathing space and time to care for me. I wondered if I would once again have to let go of what I loved to do–writing and teaching. 

There was no balance but I longed for it. 

I have an amazing husband who has had so much patience while I care for my mom. For months, I barely saw him. Again it felt like when we were separated by caring for our two boys. I needed our relationship to stay intact.  

In March of 2024, my retinas in my right and left eye detached. I was forced to sit, not do a thing. I couldn't turn my head, lift, sneeze, garden or clean. It took three months for my eyes to heal. I cared for my mom in a different way as I was forced to care for me. 

She was OK.

June came and I had trouble breathing, low pulse, and dizziness. I was diagnosed with Premature Ventricular Contractions (PVCs) caused by stress. I stopped caffeine, drinking any alcohol, and was prescribed magnesium oxide. It was suggested that I exercise, eat better, and reduce stress. 

My eyes and heart were warning me to clean up my shit. 

I have begun exercising again and eating better. I’m fully back to the work and writing that fuels me. Journaling had always been the through line through all of my journeys so it was helpful to look back and see the chaos and how I reacted. I reeled from the raw emotions and shit I had been stuck in.

These are tips that work for me. As I said, this is my journey and we all have our specific circumstances and lived experiences. I hope something resonates with you and creates a shift that you need for your highest good.

• Each morning I sit and set my intentions and how I desire to be for the day. I clear my space and start anew. What I wish to call in. I take this quiet time to be with myself. It grounds and balances me.

• I schedule exercise/movement every day. Even if it’s a short walk. 10 minutes using my Fitness+ app on Apple. A light yoga flow or stretch. I have added weight training so that I can lift my mom and her wheelchair but especially for me to maintain my health. 

• Set boundaries around my work, time for myself, and family. Being self-employed is fabulous because of my flexible schedule. But it also makes it easy to think that I can fit it all. Now I schedule time for writing, creativity/curiosity, journaling, teaching, Reiki sessions, social events, and watching my family’s favorite football (soccer) team Manchester United. I create boundaries around caring for me. It has taken time to appreciate and respect them. 

• I receive regular energy work through Reiki. As a Reiki practitioner, I have seen and felt the benefits of Reiki. It’s different for everyone but energy work has cleared many layers of pain, fear, doubt, guilt and grief from my loss and stress of caregiving.

My mom does not live with me. I do not care for her 24/7 anymore. So I have these pockets of space to care for me. 

It has taken months to break the guilt I feel not always being in that fight or flight mode. 

Again, thankfully my mom is OK. When I'm with her I can be present.

I feel better, more energetic, and hopeful. 

I am very cognizant of the fact that many of you reading this do not currently have that space.

For those of you who are on your own caregiver journey, I understand and hold you in my heart. I hold space for you to be as you are at this moment.

An Offering For You-

I wonder if within the chaos of caring for another, could you place your hands on your heart, close your eyes, and take a deep breath.

• Recognize that YOU are still here.

• YOU are important.

• YOU are a light that shines as a beacon of hope for others.

• The light within YOU is your soul blazing with love for YOU.

• Feel the light, the energy of YOU.

• Feel the light move through your body heating your chest and rising to your throat. It eases your jaw, soothes your eyes, and massages your temples. This energetic light expands through the top of your head out of your crown chakra. It shines bright showing you love as it sends light out. This light warms your core, your solar plexus, flowing through your sacral and root chakras. It courses through your thighs, down your legs and into your feet, as it seeps into the earth. 

• May this light ground you in this primal energy that is yours whenever you need it.

Hands to Heart could be the start of caring for YOU.

It lays the foundation to remembering that YOU are a beautiful soul on this wild ride as a human.

Stay connected to your soul. May it be your beacon of self-care and love. 

Let’s Connect: Always happy to hear from you. Feel free to share stories or how this resonates. All thoughts are welcome.