The Physical Manifestations of Grief in Caregivers

The Physical Manifestations of Grief in Caregivers

The Physical Manifestations of Grief in Caregivers

The physical manifestations of grief in caregivers are unexpected and pervasive. That, in a nutshell, is what God has been teaching me since the death of my mother on JuneĀ 23,Ā 2023.

Mom’s suffering was great during her final 2 years on this earth. My siblings and I had no desire to prolong her life through medical intervention. We rejoiced when her suffering ended. Her funeral was a celebration, a sharing of memories, a gathering of extended family who loved her and supported us. We wept, we hugged, we said our goodbyes, and my siblings moved on with their lives.

I tried to do the same. A few weeks after Mom’s death, my husband and I packed our new camper and headed west for a much-needed vacation. On the second day, we turned around due to truck trouble and prayed as it limped all 500 miles to our home.

Soon after our return I started limping due to foot pain. The foot pain moved into my leg and then into my hip. During this time my uncle, who was like a second father to me, died. In mid-October, physical pain landed me in bed. From there I limped to the doctor’s office, was diagnosed with a pinched nerve, given a cortisone shot, and started physical therapy.

In an attempt to spare you the details, here’s a pared down timeline of life from then until now:

November and December 2023: Physical therapy, physical therapy, and more physical therapy.

December 2023: Pinched nerve better, bursitis causes by pinched nerve exercises worse.

January 2024: Physical therapy relieves bursitis, but pain from iliotibial band (IT band) increases.

To read the rest of The Physical Manifestations of Grief in Caregivers, visit the Key Ministry website.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country.Ā Sharing Love Abundantly with Special Needs Families: The 5 Love LanguagesĀ® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon.Ā See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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Experiencing Post-Traumatic Growth while Raising a Child with Disabilities

Experiencing Post-Traumatic Growth while Raising a Child with Disabilities

Experiencing Post-Traumatic Growth while Raising a Child with Disabilities

Experiencing post-traumatic growth (PTG) while raising a child with disabilities may not be on your radar screen when you’re drowning in the stress associated with caregiving. The only growth that concerned me during our son’s medically fragile years was increasing his strength as he fought for his life. Paying attention to the stress I was experiencing while he struggled, and possible growth coming from it, never crossed my mind.

Now, as I reflect on the hot mess I was in 1982 after our son’s birth, I barely recognize the young and very stressed person I was then. The credit for my present lack of hot messiness goes to post-traumatic growth.

By now you may be asking yourself, ā€œWhat is post traumatic growth, how do I sign up for the class, and how do I know it’s happening in me?ā€

Let’s start with the first question.

In a research study conducted by Taylor Elam and Kanako Taku, they define PTG as ā€œthe positive psychological changes as a result of a struggle with a major life crisis or traumatic event.ā€ The crisis or event is the kind that rocks a person to the core and forces a re-evaluation of beliefs about the world. That sounds a lot like what many parents experience after a child’s diagnosis, doesn’t it?

Now, on to the second question.

The bad news is that I don’t know of classes about PTG. But according to Richard Tedeschi, who has worked extensively with traumatized veterans, you can facilitate and encourage your own growth in 5 powerful ways.

To learn more about experiencing post-traumatic growth while raising a child with disabilities, go to this link at the Key Ministry blog for special needs parents.

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Photo byĀ Elijah HiettĀ onĀ Unsplash

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly with Special Needs Families: The 5 Love LanguagesĀ® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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Trauma vs. Trust

Trauma vs. Trust

Trauma vs. Trust

Parenting isn’t easy. And it’s even harder when it’s combined with special needs and the trauma that brings. Guest blogger Valeria Conshafter explains how she walks the path of learning to trust in God in the midst of parental PTSD.

Recalling my daughter’s health challenges with Esophageal Atresia/Tracheoesophageal Fistula (EA/TEF) has been a struggle for me. The multiple life-threatening incidents, endless nights pacing around hospital hallways, the sounds of beeping monitors, and the smells the mind will never forget will be forever ingrained in my core.

For years, I kept trying to figure out a way to live with the struggle of PTSD. For many years, I felt lost in my own disoriented thoughts, lacking belief there was an exit, let alone a possible way to live without trauma. My therapist once said that living with trauma is to be constantly in a watchful mode, being trapped and looking at survival through a peephole.

I felt trapped inside a box closed tight above my head. The peephole allowed a glimpse of light that was too intense to look at. I wanted to see what was out there. There were days when I attempted to get out of the box and peeked around until I felt an unexpected desire to step out for a bit. I would step out of the box, pretending I could handle it. I’d stay out for a while. Some days were better than others. But soon enough back I was inside that trap.

Thankfully, after countless sessions of therapy and deep spiritual and emotional work, I found freedom from this trap that is living with trauma and found trust instead. Practically speaking, this is what I have learned when life reminds me of my trauma.

First, I trust God. I keep reminding myself and saying it out loud when I am triggered by random events that I have no control over life’s circumstances. I have no control over my daughter’s health or future. God does. Even when I think that I am in control over all the vitamins I give her, the food choices I give her, choosing all her doctors, and deciding all medical interventions, ultimately what I am doing is just a ā€œprotectiveā€ measure, perhaps for my own sake. But God, above all things, is the one in charge of every sickness, every doctor’s visit, every possible outcome. So, I say this out loud or write it down in my journal—God is in control, not me.

The next thing is that I must trust the process. After I put my trust in God, trusting the process should be easier. Yet life itself can challenge your trust, making you question yourself and your faith! You may ask yourself—Is there something else I should do? Should I really let go and let God? These and other questions will most likely make you doubt the process, and soon enough you are trapped again. Doubts and fear settle in quickly and put you in an anxious and desperate mindset. So I again will say these words out loud or write them down—God is in control, not me. I trust the process.

Finally, I trust her—my daughter! She is 15 now. I must trust her! When she is sick—for example, with a simple cold—and has that horrible, loud, barking cough typical of tracheomalacia babies, I stop, breathe, say my trust phrases, and I look at her. She is fine. There is a lot of self-talk in this part of the process which is helpful to distract my mind. She may be sick and have a bad cough (a trigger for me), but she is breathing. So I look at the facts. She is handling it. She is more mature now and understands the cough, the asthma, the breathing… She is learning to deal with it alone. Because for her this is her future. Her life. The life I entrusted to God’s hand. I then repeat these words or write them down—God is in control, not me. I trust the process. I trust her.

The work is hard. The road to healing is long. But as I watch my daughter grow and go onto her own path of independence, I believe more and more that life after trauma can be fulfilling and happy too.

I want to rejoice from all the blessings I have today. I want to be happy about tomorrow and not so worried. I want to expect the best and not the worst. I want to move on and away from that box that trapped me and prevented me from enjoying life for so long. Trauma is my past and not my future. This is what I have learned and hope it helps you too.

Do you like what you see atĀ DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email.

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Valeria Conshafter is a native of Brazil. She has a background in Counseling Psychology and currently works for a women’s organization providing emotional and spiritual support to women all over the country. She loves writing, cooking, and praying for her family and friends. Valeria lives in Houston, Texas, with her husband Todd, their 15-year-old daughter, Sofia, and their two Standard Poodles, Chocolate and Oreo. You can find Valeria on Instagram, Twitter, and Facebook.

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How Can I Make You Feel Safe?

How Can I Make You Feel Safe?

How Can I Make You Feel Safe?

How can I make you feel safe?

This question runs through my mind every time I enter the room in the long-term care facility where my mother lives. When I walk through her door today she is asleep in her recliner, her body listing to the left as usual.

I put my things at the foot of her bed before greeting her. “Hi Mom!”

No response.

I speak louder. “Hi Mom!”

She wakes with a start and turns toward me. She blinks. “Hi Jo!”

“How are you today?”

“Tired, Jo. I’m so very tired. I just want to sleep.”

“I brought you an ice cream bar. Are you too tired to eat it?”

“No.” She presses the button of the recliner’s remote control until she’s sitting upright. “I can eat it.”

While she devours her ice cream, I wet a paper towel. When all that remains of her treat is the wooden stick I throw it away and wipe her sticky fingers and lips.

“Why am I so tired?” she asks as I sit down to visit. “All I do is nap all day.”

She asks this question every day.
Every day I walk her through the chores she did on her parents’ farm during the Great Depression.
Her career as a serious elementary and secondary student.
Her college days.
Her early years as a teacher.
Her days as the wife of a farmer who became an extension agent.
Her return to teaching after her husband became ill.

 

To read the rest of How Can I Make You Feel Safe?, visit Key Ministry’s blog for parents.

Do you like what you see atĀ DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter andĀ signing up for the daily RSS feed delivered to your email.

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Jolene Philo is the author of theĀ Different DreamĀ series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of theĀ Different Dream website.Ā Sharing Love Abundantly with Special Needs Families: The 5 Love LanguagesĀ® for Parents RaisingĀ Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, andĀ at Amazon. The first book in her cozy mystery series, See Jane Run!, features people with disabilities.

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The Coronavirus, Trauma, and PTSD

The Coronavirus, Trauma, and PTSD

The Coronavirus, Trauma, and PTSD

The coronavirus, trauma, and PTSD have become an unholy trio in recent months. June is PTSD Awareness Month, and to mark the occasion this post highlights preventative tools parents can use with children. This excerpt from my book, Does My Child Have PTSD? What To Do When Your Child Is Hurting from the Inside Out), explains how parents can help kids process trauma so it doesn’t become PTSD.

Parents can practice proactive measures to help their children process traumatic events and thus prevent PTSD. In Trauma-Proofing Your Kids: A Parent’s Guide for Instilling Confidence and Resilience, Dr. Peter Levine and Maggie Kline promote a step-by-step process they call ā€œfirst aid for trauma prevention.ā€ They suggest following these steps after a child has experienced a traumatic event.

  1. Check your own body sensations first. Children are very sensitive to the emotional states of adults. Parents or other caring adults must compose and calm themselves before attempting to calm a child.
  2. Assess the situation. Look for signs of shock in the child, and if you see them, have the child sit with you until the shock wears off.Ā 
  3. As the shock wears off, guide the child’s attention to his body sensations. Ask increasingly specific questions about how the child feels in his body to guide him back to the present.
  4. Slow down and follow your child’s pace by careful observation of changes. Leave time between questions for the child to resolve each cycle of emotions, and be alert to cues that indicate a cycle is complete.
  5. Keep validating your child’s physical responses. If your child is trembling or crying, put a hand on his shoulder and tell him it’s okay to let the scary stuff out.
  6. Trust in your child’s innate ability to heal. This gets easier as you practice the steps of trauma first aid. Remember not to rush the process, and give your child the necessary time to process excess energy and expel it.
  7. Encourage your child to rest, even if he doesn’t want to. Dr. Levine and Kline believe that sleep helps a child process the event and discharge energy. By providing a calm, quiet environment, you help your child complete the healing.
  8. Attend to your child’s emotional responses and help make sense of what happened. This step comes later, after the child is once again calm and rested. Set aside time to ask the child what happened. Give reassurance that it’s okay to feel scared, sad, guilty, or embarrassed. Share a story about a time when you felt like your child feels. Assure your child of your unconditional love. Give your child time to retell the story using drawing, clay, or play.

When our son was four, he needed one final corrective surgery on his esophagus and stomach. Many, many years later he told me, ā€œWhen they took me into the operating room, it was so scary. They wheeled me in on a hard bed. The operating room was icy cold. The walls were glaring white, and the lights were so bright they hurt my eyes. Then these people without any faces leaned over and told me everything was okay. But it wasn’t okay. It was terrible. And I went crazy, trying to get off the table and flailing my arms until those people without faces pinned me to the table.ā€

His words perfectly described what masked OR nurses must have looked like to him—people without faces. His recounting also reminded me of what a nurse said after our little boy arrived in the pediatric intensive care unit. ā€œHe went crazy.ā€ She sounded none too pleased. ā€œHe pulled all the monitor wires and his IV.ā€

ā€œLet me go in to him,ā€ I said. ā€œI’ll calm him down.ā€

ā€œNo,ā€ she said firmly, ā€œnot until he’s settled down.ā€

I waited a long time, helpless and hurting, before they let me see him. If I had known then what I know now, I would have insisted on seeing him immediately. And if trauma first aid had been around back then, I would have used it to help him process what had happened to him.

Before entering his room, I would have taken some deep breaths to calm myself. Then I would have prayed for calm beyond what I could muster on my own. Once in the room, I would have taken time to study his face. Was it tear-streaked, pale, his expression pained? And then I’d have checked his body for signs of shock. Was his body rigid? Trembling? Was his breathing too fast, too, slow, or labored?

Having just endured several hours of major surgery, our little boy would be in shock. I would have offered the best first aid possible at that point—sitting beside his bed, holding his hand, stroking his forehead, rubbing his cheek, and giving constant reassurances of ā€œMommy’s with you, Allen,ā€ interspersed with verses of his favorite lullabies.

Eventually, as the shock of the situation and the surgical pain eased, perhaps once he had moved to a regular room, I would have asked, ā€œAllen, how does your tummy feel?ā€

ā€œHurts.ā€

ā€œDoes anything else hurt?ā€

ā€œMy foot.ā€

ā€œYes, the needle in your foot must hurt. Does your hand hurt, too?ā€Ā 

He would hold up his hand and look at it. ā€œNo. No owie on my hand.ā€

ā€œThen can I hold your hand?ā€

Allen would nod, and I’d hold his hand. ā€œLet’s pretend we’re holding a bunch of balloons together. Are you holding them tight?ā€

He would nod.

ā€œNow, let’s pretend to put all the owies from your tummy and your foot inside the balloons.ā€ I would wait a few seconds. ā€œDid you do it?ā€

He’d nod again and smile a little.

ā€œOkay, on the count of three, we’ll let go of the balloons and watch them carry your owies out the window and into the sky.ā€

He would smile again, and we’d look out the window, imagining the balloons disappearing in the bright blue Iowa sky. I would notice that his body would be more relaxed and his breathing would have calmed.

Over the next few days in the hospital, several times a day, I would have looked for signs of shock or pain returning. When it did, I would’ve repeated the questions about where he hurt and how, along with questions about what parts of his body didn’t hurt. Then I would have helped him focus his attention on where his body didn’t hurt, perhaps by playing clapping games or singing silly songs, along with hand motions.

And we could’ve made up stories—a favorite pastime for him—about one of his stuffed animals having a sore tummy after surgery. The story would have included the main character being frightened in the pediatric ICU and pulling at wires and needles. When Allen appeared scared by the story or trembled, I would have paused until his reaction, caused by the pent-up energy inside him, subsided. I would’ve reassured him, ā€œMommy’s here. I’ll stay right here until the scary feeling goes away.ā€

Had I known then what I know now, we would have repeated the stuffed-animal-has-surgery story for several days or weeks or however long it took until he could process all the trauma and dispel the energy trapped inside. Perhaps he would eventually have been able to further process the event by telling the story back to me in his own words.

Excerpted from Chapter 11 of Does My Child Have PTSD? Does My Child Have PTSD? What To Do When Your Child Is Hurting from the Inside Out (Familius, 2015)

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is both parent and daughter of loved ones with special needs and disabilities, as well as a former educator who worked with children for 25 years. She’s written several books about caregiving, special needs parenting, and childhood PTSD, including the recently released Sharing Love Abundantly in Special Needs Families: The 5 Love LanguagesĀ® for Parents Raising Children with Disabilties, which she co-authored with Dr. Gary Chapman. She speaks internationally about caregiving and parenting children with special needs and blogs at www.DifferentDream.com.Ā Jolene and her husband live in central Iowa.

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I Am Here. You Are Safe.

I Am Here. You Are Safe.

I Am Here. You Are Safe.

I am here. You are safe. These are words children who have experienced trauma need to hear from their caregivers. First time Different Dream guest blogger Heesun Hall explains how she and her husband discovered the importance of saying, ā€œI am here. You are safe.ā€ to their son and how it calms him.

My son had a major orthopedic surgery back in 2013 when he was 9 1/2.Ā The surgery was necessary to address imbalances in muscle tightness and bone development in his legs and feet caused by cerebral palsy.Ā Thile he had endured medical treatments and surgeries while in the NICU during the first 5 months of his life, this was different experience. Ā 

The moment the nurses wheeled him, drowsy but still aware, away from us, fear filled his eyes.Ā We let him know that we would be there for him when he woke up.Ā He continued to stare at us.Ā Once through the double doors leading to the operating room, my husband and I cried as we held each other, praying that we would meet our boy on the other side.

Many hours and many updates later, we were with our son as he started to wake from the anesthesia.Ā When he opened his eyes, we could see fear and pain.Ā He was lying in bed with casts that covered him from his feet to mid-thigh.Ā While he may have understood the need for it, he was not prepared for the reality of what his post-surgery life would be like.Ā Neither were we. Ā 

The more long-lasting and significant legacy of that surgery was the emotional trauma he manifested through sleep disruptions.Ā Not only was Max unable and unwilling to fall asleep; but also, once asleep, he would wake several times screaming in terror. Initially, we would try to ā€œtalk him outā€ of his screaming and thrashing. But the more we tried to speak to him, the more his behavior escalated. He was operating from a place of fight/flight, reliving the trauma of his surgery, so trying to reason with him was not connecting with what he needed. His thinking brain had been hijacked, and he was acting out from his survival brain.

I had read about childhood trauma and the importance of helping a child to feel safe.Ā Based on this, my husband and I developed strategies to deal with his sleep issues.Ā Before bed, while he was calm and receptive, we would let him know that we would be there for him by saying, ā€œI am here. You are safe.ā€Ā Because Max needed some type of physical contact as reassurance, one of us would stay with him.Ā Sometimes, it was holding his hands.Ā  Other times, once the casts were removed and he was able to sleep on his side, it was draping an arm across him until he fell asleep.

What used to be a nightly occurrence, almost 7 years later, are not as frequent or intense. What remains is his need for one of us to be near when he goes to sleep each night.Ā Now we have a family sleeping room where we drift off each night. When he wakes in the middle of the night he calls for me, I respond with “I am here. You are safe.”Ā I place my hand on his back to reassure him of my physical presence, and he drifts peacefully back into slumber, resting in the knowledge that he is indeed safe.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Heesun lives in Colorado with her husband and two children, Max and Jozey.Ā  Her son, Max, is a surviving twin who was born 14 weeks premature.Ā  Max has cerebral palsy as a result of a brain bleed during his first few days of life and developmental delays due to his prematurity.Ā  As a homeschoolingĀ mom, she enjoys living life with her children, learning alongside them as they grow and develop.Ā  She recently started blogging atĀ www.mozeyingalong.comĀ to share her journey with others.Ā  It is her beliefĀ that the children we have are the children we need to grow into the best version of ourselves.Ā 

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