Key Takeaways

    • Early on, you may put your own needs on the back burner and focus solely on the survival and well-being of your child. 
    • Caregiving can be rewarding, scary, exhausting, and stressful. Don’t be afraid to ask family and friends for help with everyday tasks. You are not alone.
    • As your child becomes more independent (whatever that means for them), you also adjust and may adopt a more ordinary parent-child relationship. Importantly, you may be able to focus more on your self-care.
How do I find a new normal for my child?

When my precious child suffered cardiac arrest, our lives were turned upside down. It was a sudden, life-threatening event that changed everything. Literally, everything. Initially, I felt scared and helpless, and my focus turned to ensuring my child received the best medical care possible. But there is more to it. In this article by co-survivors for co-survivors, you’ll learn how others like you processed their feelings to find the new normal in their kid’s life.

Understanding what just happened

When your child suffers cardiac arrest, you experience a sudden, life-threatening, and life-changing event. It doesn’t matter if you see it happen, if you participate in helping, or if you are miles away when it occurs – it’s traumatic. Your life changes in a heartbeat.

Everyone’s experience is unique. And there’s no right or wrong way to feel. Initially, you may feel scared, helpless, or even shocked. Putting your own needs on the back burner, your focus turns to the survival and well-being of your child. You sink all of your energy into making sure they are getting the best medical care possible. Being their advocate is how you endure the unknown.

Once your child is out of grave danger, you experience a sense of immense relief that their life has been spared. You celebrate this milestone but know this journey is far from over. You seek information and knowledge to help process what’s happened and to reduce the uncertainty of what’s next. That’s when the enormity of what’s happened starts to set in. Sometimes you may feel upset and worried, as your child may seem disconnected, agitated, confused, and not the person they once were. This can be especially challenging in the early weeks of their recovery. And you wonder if they will always be this way. The honest answer is: you can’t yet know. Try to remain patient and hopeful. The capacity for the body and brain to heal is amazing.

The perspective of a parent co-survivor

Throughout my journey, I experienced a range of emotions – relief, worry, frustration, and more. I learned that recovery after cardiac arrest is measured in months and sometimes years. It’s a long road, and it’s important to give yourself and your child time to heal.

When my child was able to come home, my role shifted to medical caregiver, not just parent. Suddenly, I was responsible for my child’s medical care, nutrition, and physical safety. It was rewarding to be able to help my child, but it was also exhausting and stressful. It’s important to ask for help when you need it, whether it’s from family, friends, or healthcare professionals.

One of the most challenging parts of the journey was learning to let go as my child regained independence. As a parent involved in caregiving, I had been so focused on my child’s needs that it was difficult to give up control. It took time, but I learned to trust my child and let them take more responsibility for their own care. Communication was key during this transition. My child and I had to work together to navigate this new phase of the journey.

Throughout it all, it’s important to remember that recovery is not a straight line. There will be ups and downs, and unexpected challenges may arise. It’s okay to feel a range of emotions, from gratitude to grief to guilt. It’s important to give yourself permission to feel your true emotions and to seek support when you need it.

Things to do when leaving the hospital

You may feel unprepared in your new situation and completely responsible for your child’s medical care, in addition to other responsibilities you previously fulfilled. Try to make to-do lists and set schedules. Being organized can lessen stress and help you feel more confident. Don’t forget to schedule some time for yourself. Here are five points to consider when preparing to come home with your child:

    • Follow discharge instructions: Make sure you understand your child’s discharge instructions and follow them closely. This includes things like medication schedules, wound care, and follow-up appointments.
    • Monitor your child’s condition: Your child’s recovery will be an ongoing process, and it’s important to keep a close eye on their condition. Watch for any signs of complications, such as difficulty breathing, chest pain, or changes in consciousness. If you notice anything concerning, don’t hesitate to contact your child’s healthcare team.
    • Create a safe home environment: Your child may have physical limitations or require special accommodations as they recover, so it’s important to create a safe home environment. This may include things like rearranging furniture, installing handrails, or removing trip hazards.
    • Manage your child’s medications: Your child may require multiple medications as part of their recovery, so it’s important to stay organized and keep track of their medication schedule. Make sure you understand the purpose of each medication and any potential side effects.
    • Communicate with your child’s care team: Your child’s healthcare team will be a valuable resource throughout their recovery. Don’t hesitate to ask questions or seek advice as needed. It’s important to keep them updated on your child’s progress and any concerns you may have.

Always remember you are not alone. Don’t be afraid to ask family and friends to provide some relief by helping with everyday tasks, from delivering meals to mowing the grass to sitting with your loved one so you can have some time to yourself. Practicing self-care is truly important as you work through your own healing while taking care of others.

Co-survivor insight: “Our turning point for our family was after the first year and a half. The first year and a half consisted of several hospitalizations and surgeries that continued to increase our fear and anxieties and rock our foundation. After the surgeries and many ongoing cardiac rehabilitation sessions were completed, that’s when we started looking forward instead of backward.”

Managing the unexpected

Healing is never a straight line. There may be zigs and zags along the way. Medications may need to be adjusted, or there could be repeat trips to the hospital. Or perhaps further testing or treatment is required. These moments can be taxing, scary, and intrusive. You may begin to worry about your other children as well. This can create stress and distress in your family relationships, especially if you have a co-parent who is coping differently than you. Minor medical scares may cause you to relive the initial trauma of the cardiac arrest. But if you feel something isn’t right in the early phase of your child’s recovery, new symptoms often require immediate care out of an abundance of caution. Just try to remain calm. Trust your instincts.

Throughout your journey, you may feel a combination of unsettling and unexpected emotions: 

    • Gratitude that your child survived when many do not 
    • Grief for what you fear they (and you) may have lost and an uncertain future
    • Guilt for feeling grief when you think you should only be grateful

It’s okay to let yourself feel your true emotions. Try not to be too hard on yourself as a parent, co-parent, and co-survivor, as well as a caregiver to a child with potentially complex medical needs. You are entitled to feel a range of emotions. Only you are walking this unfamiliar and winding path. And you don’t yet know where it will lead. 

When you feel at your wit’s end, try to find comfort and strength in how far you and your child have already come. As the saying goes, “Recovery is not a sprint. It’s a marathon” with hurdles along the way.

New developmental stages and letting go

While cardiac arrest recovery outcomes vary, the hope for every survivor is to recover to their fullest potential and live the most fulfilling and independent life as possible. Gradually your caregiving may begin to shift. Your child may start to regain aspects of independence. Perhaps they can (eventually) help manage some of their daily tasks and parts of their healthcare (e.g., medication management, exercise, etc.)

As your child becomes more independent, you can watch them fulfill some developmental milestones. They may never be like other kids, but they will heal and progress in their own way. As a caregiver, this can be a wonderful yet anxious time. For a long time, you may have been their protector, attending to their every need. As you transition from mostly  caregiver to also being a co-survivor, you may be fearful that something will happen to them again, which can drive your need to control. Depending on their age when the cardiac arrest occurred, your child may be working hard to regain their own confidence and freedom to get back to life after cardiac arrest. Letting go can be difficult. You may be hypervigilant, checking on them all the time and not letting them out of your supervision. You may be in a state of constant anxiety and high alertness. Try to work through it with your child and family. This time of transition is when many co-survivors focus more on their own healing.

The same but different

Throughout your co-survivor journey, the intensity of your own emotions evolves over time, as does your psychological well-being. 

Some co-survivors indicate they grow into their new normal with their child. They return to experience a more ordinary parenthood and childhood.

A special note from the authors to their fellow co-survivors:

You can do this! When you think back to the early days after your child’s cardiac arrest, perhaps you thought you were on the sidelines while your child was jumping through all those hurdles. Far from it. 

We hope you’ll come to realize you’ve been jumping your own hurdles quietly and out of the view of the roaring crowd. 

We see you. You are not alone. 

Throughout the ups and downs of your recovery journey with your child, never lose sight of just how amazing you are!

Looking back on the journey, I realize that I am stronger and more resilient than I ever imagined. I hope that sharing my experiences can be a tool or resource for other parents of cardiac arrest survivors. Remember that you are not alone, and with time and support, you and your child can find your new normal in your relationship.

Thank You to Our Contributors

Matthew Douma & Debbie Medina

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