Category

Family & Patient Support

How to Keep a Routine with a Child in Treatment

By Mariah Dantzler, MS

It is important to understand that it may be inconvenient or nearly impossible to keep a routine while a family member is undergoing cancer treatment. But we know that rhythm and routine create feelings of safety and security. The following tips may help your efforts to create a routine within your family during this time.

When a child is first diagnosed with cancer, the parents’ focus is inevitably on getting their child the care and treatment they need. This focus continues through treatment and can last months or even years. Parents also do everything they can to ensure the rest of the family is cared for. However, due to doctor’s visits, hospital stays, and inevitable emergencies, things that had been normal in family life may fall to the wayside as the child in treatment needs to take priority. In order to acknowledge the shift in priorities while protecting the rhythm of the family, consider the following:

 

    • Identify 3-5 lifelines. Lifelines can be close friends, family, or members within your community who will rally around you and take on any task thrown their way. These are people who will help with transportation needs, laundry, lawn care, or whatever needs to be done.

 

    • Create a family mission statement, crest, or logo. You can often refer to this with your family in times of stress or hurt to bond together.

 

    • Try to keep siblings on their schedules as much as possible. For instance, keep them on their sports teams, in their favorite activities, and allow them to continue to have play dates. Rely on your lifelines to work out logistics.

 

    • Dedicate a time each month to have uninterrupted family fun time.

 

    • Keep bedtimes the same.

 

    • Make a chart of things that may change during this time, also noting what will still stay the same. This allows children to anticipate and prepare for inevitable change – but still feel confident they can rely on some things to remain the same.

 

    • Try to honor choices and individual preferences for children in the family in the areas they can control. Allowing them to choose such things as the clothes they wear, the snack they eat, or the television show they watch increases their feelings of having some healthy control of their lives.

 

    • Play with your children whenever you can. Younger children rarely discuss their problems openly, but they tend to show you how they are feeling through play and activity.

 

    • Encourage your kids to still have fun when they can. They need to know it is still okay to experience joy even during this challenging situation.

 

Coping with cancer is never an easy task, especially when a child is the one who is suffering. Just remember, your whole family is in this together, and all of your children need your attention more than anything else. Cleaning and laundry can wait! Love on them, spend time with them, and give all of them hugs just because.

 

Mariah Dantzler, MS is an Associate Professional Counselor who works with children and their families at the Summit Counseling Center, located in Johns Creek, Georgia.

A Witness to Joy

For many people, “December” is synonymous with joy. But for those fighting cancer during the holiday season, joy can be hard to come by. Thanks to our incredible community, CURE was able to add a measure of joy in many unique and heartwarming ways.

It started with holiday parties in early December. In Atlanta, more than 100 volunteers gathered at The Atlanta Event Center and welcomed 113 families to the festivities. There were games, gingerbread houses, crafts, holiday treats, and, of course, Santa stopped by to say hello. Between the patients, survivors, siblings, and parents, nearly 500 people were treated to a very special day.

“Thank you for putting a smile on my son’s face at the Holiday Party. He’s had a rough few months, but he really enjoyed today.”

Santa hopped on his trusty sleigh and hustled to Victory North in Savannah where he spent time with 37 South Georgia families. 176 guests enjoyed crafts, face-painting, treats, video games, and more. It was a joyful afternoon, as one volunteer remarked:

“I don’t think I have ever had as much fun and witnessed such joy as I did that afternoon. I loved that so many people were there, and it seemed that everyone could forget their worries for a few hours and just enjoy.”

Your generosity also allowed us to serve more than 1000 meals to patients and their families during December, including a very special traditional Christmas meal at both campuses of Children’s Healthcare of Atlanta. Just consider the boost that a plate full of turkey, mashed potatoes, and cranberry sauce gave families forced to be in the hospital instead of home for the holidays.

Donors supplied us with stockings, ornaments, pajamas, and blankets which we delivered, giving an extra nudge of encouragement.

Imagine being a parent dealing with the high cost of treatment during the holidays. With the unplanned expenses, there may not be enough to provide Christmas or Hanukkah gifts for your family. That’s where our donors really stepped up and became Holiday Angels. You took their wish lists and filled them all. In fact, there were so many gifts that we had trouble fitting the bounty in our office. Altogether, donors provided gifts for 104 families. Between our little cancer fighters and their siblings, 300 children experienced holiday joy when they opened their gifts.

The words of two families sum up the gratitude of all.

“Thank you to CURE Childhood Cancer! Today we went to their office after my child’s radiation appointment and I picked up gifts for my kids that had been gifted to us for Christmas. I am so excited to see their faces once they open up their Christmas gifts!”

“Thank you so much for your generosity.  You have helped make a difficult situation a little brighter for not only my child battling cancer, but our entire family. Our hearts are overwhelmed with gratitude! May your Christmas be filled with many blessings.” 

None of this would have been possible without you. Thank you for allowing us to spread holiday joy to children and families who desperately needed it.

Timothy’s Road to Health

Timothy is the kind of boy who would never let a little stomachache slow him down. A sports enthusiast, you could often find him with a ball in his hand – usually a baseball or football. But toward the end of 2017, a persistent stomach pain started to take its toll. As the pain’s severity increased, his mother, Sloan, began looking for answers.

“We began at our pediatrician and then progressed to a pediatric gastroenterologist,” Sloan recalled. “After about three months of trying things that didn’t help, the doctor ordered a sonogram.”

The sonogram revealed a tumor near his stomach and liver. Timothy was immediately prepped for a biopsy where the tumor was identified as neuroblastoma – a childhood cancer that develops from immature nerve cells found in several areas of the body. The diagnosis was a surprise because Timothy was eleven years old, and neuroblastoma most commonly affects children five or younger.

After the biopsy confirmed the results, Timothy had another surgery to add his port and started his first round of rigorous chemotherapy that was to last five months. While the treatment did wonders to shrink the tumor, it also ravaged his body at the same time.

“Timothy went from a healthy boy to a state of malnourishment,” Sloan said. “He was so sick that he got down to 48 pounds, and we had to have a g-tube placed to give him nutrition.”

The next phase of treatment was removal surgery. The chemo had worked to shrink the tumor, and during a seven-hour operation, doctors took out all they could. Because the tumor was wrapped around two major arteries, the surgeon was unable to remove it completely. Once he recovered, Timothy had a stem cell transplant followed by radiation, and then immunotherapy, which is a type of cancer treatment that boosts the body’s natural defenses to fight cancer.

The immunotherapy was particularly harsh on Timothy, and he spent weeks at a time in the pediatric intensive care unit. Through all of the difficult treatments, separation from friends and family, and time away from home, he never complained. Despite missing many days of school, he worked hard and was able to finish the sixth grade with all A’s!

Timothy has been declared No Evidence of Disease (or NED) for ten months. He isn’t quite finished with his treatment. In order to prevent a relapse, he is enrolled in a clinical trial and takes three pills twice daily. He will continue that regimen for another year and a half.

“All-in-all, Timothy is doing great,” said Sloan. “His weight is up to 80 pounds, and he’s looking forward to playing baseball again in the spring. We aren’t sure about football, but we’ll decide on that later. For now, we are just thrilled that he’s healthy again.”

Timothy’s family has expressed gratitude to CURE for helping them deal with the challenges of treatment. The hospital where he received the majority of his treatment was 80 miles from his home, and his stem cell transplant was 300 miles away. CURE was able to help ease the financial burdens of the travel through our family emergency fund – part of which helps with gas and other travel-related expenses.

“We want to make sure the high cost of transporting a child to treatment doesn’t take a toll on a family’s finances,” said Lisa Branch, CURE’s Director of Patient and Family Services.  “CURE is happy to be able to help families like Timothy’s in this way, because a long stretch of highway should never be a barrier to a child’s health.”

Helping Siblings Cope

Erin Nicolas, MS, LPC, CPCS, RPT-S

When a child is first diagnosed with cancer, the parents’ focus is inevitably on getting their child the care and treatment needed. This focus continues through treatment and can last months or even years. It is the natural and logical focus for parents, and even siblings would agree that parents must attend to the sick child. Parents also do everything they can to ensure the siblings are taken care of. However, with doctor’s visits, hospital stays, and inevitable emergencies, siblings are bound to get less attention, and their own struggles to cope with their brother or sister’s illness may go unnoticed. To help siblings cope, it is helpful for parents to know how children process major life events in the first place.

Children cope with major life events in bits and pieces. Within a 20-minute period, they may go from crying with sadness to laughing hysterically at something they saw on TV. Children rarely sit around and ruminate on difficult topics. This behavior can seem erratic and even inappropriate at times, but it is what children do. Children also process through play, not words. It can be difficult to sit down and have a long conversation with your five-year-old about her sister’s battle with cancer, but playing with her will may allow you to convey information better and result in some level of understanding. Play is a child’s most natural and comfortable language, so we need to let them use it to process major changes. Lastly, children tend to focus more on how they are going to be affected by their sibling’s diagnosis rather than how others are affected. This isn’t selfishness. It is developmentally appropriate.

So how can you tell if your child is struggling with her sibling’s illness? Remember that children don’t often tell us their problems. They show us. The first sign that your child is struggling is behavior change. Some children act out to get attention while others may withdraw. Those who withdraw often do so because they don’t want to be more of a burden to their parents. Losing focus and dropping grades at school are also a sign of struggle as well as changes in sleeping and eating habits.

Children are easily affected by their environment so when life gets disrupted by something as big as cancer, children are disrupted as well. They mimic what is going on around them. Another sign of struggle is when your attempts to comfort them never seem to be enough. Lastly, children will often isolate themselves from friends or lose interest in things they used to enjoy.

Helping your children becomes the next challenge. It can be exhausting trying to find time for everyone when you are juggling medical care, work, and the needs of the family. Here are a few tips to help siblings get through this difficult time:

  • Keep the rules the same. There will always be exceptions and special circumstances, but consistency should be a priority.
  • Keep to your routine as consistent as possible. Bed times, homework routines, etc. need to stay the same whenever possible. Consistency makes life feel more stable and secure.
  • Be honest and age appropriate with the information that you share. Younger children obviously need less detailed information, but they do need to know how side effects may affect their sibling. For example, they need to know that treatments will make their sibling more tired and less likely to feel like playing. Allow them to ask questions and don’t be afraid to say “I don’t know.” Remind them regularly that cancer is no one’s fault.
  • Set up regular family meetings to check in. Keep the conversation open.
  • Play with them when you can.
  • Utilize choices whenever possible. Children feel more in control of their world when they are able to make choices, even choices as simple as what snack to pack for school.
  • Keep your kids in as many of their regular activities as possible. They need to know that it’s okay to still have fun.

Coping with cancer is never an easy task, especially when a child is the one who is suffering. Just remember, your whole family is in this together and all of your children need your attention more than anything else. So you may need to put off cleaning and laundry – or ask others to help so you can spend time with siblings.  They will be grateful for your love and hugs.

Hope after Loss

The loss of a child is so unnatural in our society that many parents feel utterly alone in their grief. Since it is such a rare occurrence, most people have no idea how to help or even engage with a bereaved parent. As part of our commitment to support families devastated by childhood cancer, CURE brings these parents together every year at our Weekend of Hope and Healing. During this weekend, families celebrate the lives of their children while attending presentations and workshops designed to assist them in their grief process.

But it is so much more than that. Each year, we hear of new ways lives have been touched as parents of different races, religion, income levels, and ages come together and realize they are not alone. Last month, parents of 51 precious children gathered together to move forward in their grief. Here is just a taste of what they discovered.

Jonathan Day lost his son, Owen, in September of 2017 and found peace during the weekend.

“Whenever I am in a normal group of people, I can stop a conversation or destroy the mood by just talking honestly about my children,” he explained. “But here, I sat in a room with people who know exactly what I went through. I got to talk about Owen without making anyone feel uncomfortable. I found that soul-settling.”

Jonathan also took comfort in hearing that other men share many of the same feelings with which he has struggled.

“The rational side of me understands that cancer was out of my control,” he said. “But the emotional part of me still holds onto the feeling that I failed as a father. My principle job was to protect Owen and I didn’t. It was very powerful to hear that there are other men dealing with that same feeling. I didn’t feel isolated when I was in that room.”

Also in attendance was Trish McKay, who lost her nine year old daughter, Kate in April of last year. She found meeting the parents and learning about their children particularly meaningful.

“I got to make some new friends, share our stories, and learn all about their children,” she said. “And that was the best part, getting to know some of Kate’s new neighbors! I am always wondering about the new things she is doing now in heaven, and for once, I know a little bit of who she is probably hanging out with! They are really cool kids. Morgan, the sassy three-year-old who loves glitter and purple. Alyssa, the sweet fourteen-year-old who danced at her school. Anna-Charles, the six-year-old fashionista who sang Meghan Trainor songs for the nurses. Kian, the two-year-old who charmed the nurses and had an afro bigger than his head.”

We recognize that everyone grieves differently and there is nothing we could ever do to completely alleviate a parent’s grief. Grief is a process and we hope the weekend helps to move people forward wherever they are in that process. When we hear comments like those of Benji Hollis, we are assured that the weekend was meaningful.

“Our daughter, Anna Charles, passed away 4 months ago after a bout with Acute Myeloid Leukemia,” Benji relayed. “Our emotions were, and still are, too raw and we weren’t quite sure if we were ready to attend Hope and Healing. But attending was the best decision we’ve made. It was helpful to meet other parents who could relate to the pain and suffering that we are enduring. It didn’t make our pain go away, but it was comforting to know that we aren’t alone. We got the chance to really get to know some of the other parents, and we look forward to staying in touch with them, as well as seeing them next year. There was definitely a healing factor to the event that we didn’t have before we arrived. We showed up with hope and left with even more.”

 

If you’ve experienced loss, please note the common theme running through all three parents: community. There is something significant about sharing your pain with other people who understand. Whether online or in person, we urge you to seek out others whose similar experiences can help you move forward in your grief. There is hope after loss.

Coping Ahead for the Holiday Season

When you have a child diagnosed with cancer the upcoming holiday season will not be typical of the holidays you have experienced in the past. It is important and extremely helpful to acknowledge that simple fact ahead of time, so you can cope ahead. Coping ahead helps prevent us from being blindsided by our grief.

You can cope ahead by anticipating which situations may be difficult and preparing what you will say or how you will act in these moments.  This may reduce your vulnerability to intense emotions and help you manage your emotions most effectively. The following tips will help you cope ahead this holiday season.

Anticipate Heightened Emotions

For many of us, this time of year presents as a dialectic. A dialectic teaches us that two things that seem like opposites can both be true and exist at the same time. While the holiday season may be a time of joy, celebration, and getting together with loved ones, it can also bring about intense emotions such as anger, sadness, and irritation. Allow yourself the full range of these emotions without avoiding your feelings. Tell yourself that it is understandable that you will feel many emotions and give yourself the permission to respond to those emotions as you see fit. Appropriate responses may include declining an invitation to an annual function or pushing through when there may be positive outcomes to being with people you love. Plan how you want to spend your time and with whom. Coping ahead may be reviewing your holiday schedule and determining which traditions and gatherings are important to you and your family and which ones you plan to decline or eliminate this year. Coping ahead would also include preparing and practicing your response to invitations. For example, you may simply decline an invitation. No further explanation is required.

Set Realistic Expectations

Give yourself a break this year. Cope ahead by asking for help. If you usually host during the holidays, ask someone else to take over this year. Let friends and family know that you and your family may not attend everything this year and/or may leave early if things feel too stressful. Discuss with your family ways that the holidays may be different for everyone this year.

Take Care of Yourself

Cope ahead by making sure to plan time for self-care. Taking care of our physical, emotional, and spiritual self will help us be more resilient during the holiday season. Good self-care also protects us from increasing symptoms of depression and anxiety. Practice healthy eating, regular exercise, good sleep, hygiene, prayer and/or mindfulness practices, and appropriate medical check-ups.

Self-Soothe and Distract

Plan times when you can take a break from the stress of the holidays. Cope ahead by making a list of activities that will distract you, even momentarily, from the realities of treatments and the expectations of the holidays. This list may include distractions such as a movie, coffee with a good friend, or listening to your favorite music. A self-soothing list may include a run, massage, or a hot bath. Cope ahead by pre-planning and scheduling these activities; otherwise they will not happen regularly.

Seek Help

Cope ahead by researching and understanding the signs of depression. Promise yourself that you will reach out for help if you see these signs during the holidays. An excellent way to cope ahead is to research and know where you will go or who you will call if you recognize depression symptoms. Discuss this with your spouse or a close family member or friend and hold each other accountable. If you would like to discuss counseling, please visit CURE’s Counseling Program page for information.

Recognize the Good

Coping ahead to help increase your resilience may include naming three things that went well at the end of each day. Another option may be to list three things that you are grateful for each morning. Including the whole family in this practice may help with surviving the holiday season and who knows, it may become a new family tradition.

By Carleen Newsome, LPC, CPCS, ACS

Clinical Director at The Summit Counseling Center

Transition: How to Successfully Journey Forward

by Elizabeth Record DNP, Mary Batcha RN, and Lillian Meacham MD

Childhood cancer survivors are challenged with many transitions of care in their journey after a cancer diagnosis. First, they transition from a healthy child to a child with a cancer diagnosis. Then they move from a child with cancer on treatment to a childhood cancer survivor who has completed treatment. And finally, they transition from a childhood cancer survivor to an adult survivor of childhood cancer. One of the most challenging transitions for many childhood cancer survivors and their families is the transition from pediatrics to adult based health care. For some survivors, this transition is due to an upper age limit at a pediatric healthcare system, and for others it is due to a geographic relocation for college studies or a first job. It is essential for survivors to prepare to journey forward as young adults who can navigate the adult health care arena.

Below are some suggested strategies to ensure successful transition:

  1. Start early to prepare for this very important transition. Survivors should talk to their pediatrician and their pediatric survivor team. Planning ahead of time, communicating with the current and future healthcare teams, and advocating for their healthcare needs are all very important initial steps.
  2. All survivors should have a summary of the treatment they received. This is typically called a Survivor Healthcare Plan (SHP). This is an important tool as it will outline the potential late effects associated with the individual treatment. It will also have a summary of past testing that has been done and suggest recommended future testing to assess any late effects that may occur as an adult.
  3. It is important for each survivor to have an understanding of the contents of their SHP as each survivor will be the person who advocates for their health and schedules the suggested testing.
  4. Survivors should identify and establish care with an adult healthcare provider for general healthcare needs or concerns. Additionally, survivors should share their SHP with the identified adult healthcare provider.
  5. If available, survivors should identify an adult survivor clinic that is familiar with the Children’s Oncology Group Long-Term Follow-Up Guidelines, which can be found on the COG website. This will assure they are updated periodically on any changes that may alter their SHP. Many adult healthcare providers are reluctant to provide care for cancer survivors as they are not familiar with the recommended guidelines. The Young Adult Survivor Clinic at the Emory Winship Cancer Center is a local survivor clinic focused on long term survivorship care.
  6. Maintain insurance benefits. Most survivors can stay on their parents’ insurance until age 26. However, if that is not possible, it would be important for each survivor to reach out to their social worker or a financial counselor who may be able to assist them as they strive to obtain insurance benefits.
  7. Register for Cancer Survivor Link. This is a password protected, secure, patient-controlled website designed for survivors and providers that will allow each survivor to learn about survivorship, share their personal health information with each of their healthcare providers, and store their Survivor Healthcare Plan. Registration is available on our website.

In Atlanta, patients under 21 years of age can be seen in the Aflac Cancer Survivor Clinic (404-785-1717). At age 21, patients are transitioned to the Young Adult Survivor Program at the Winship Cancer Institute at Emory. The contact for this program at Winship is Mary Batch RN (404-778-3473) or [email protected]

 

 

An Invitation in the Mailbox

By LaTressa McVey

I remember the first day I held Janae in my arms. Within her first minutes, I could envision my grandkids, sending her off at college, first day of kindergarten, and her taking her first step. I never imagined that I would not only hold her while she took her first breath, but I would also hold her as she took her last.

I lost my Janae at eighteen years-old, only four years after she was diagnosed with cancer. Months into my grieving, I knew the feeling I was feeling was more than just heartbreak. A part of me died when my daughter took her last breath. I felt like a stranger left in the world with part of my heart missing. Friends and family tried their best to be there for me, saying some things that were both helpful and hurtful, such as:

“She’s in a better place” (There is no better place for her then being in my arms.)

“How are you feeling” (I thought that was obvious – my child has passed away.)

“It will get easier” (It became easier for me to hide my pain from others.)

“Is there anything I can do for you” (I don’t even know what to do for me.)

I felt as though maybe I was grieving wrong. The world is telling me I would get better… but when?

Then an invitation arrived in my mailbox from CURE inviting me to “CURE Childhood Cancer’s Annual Weekend of Hope and Healing.” Out of pure frustration with myself and my grief, I decided to go. I needed to see others like me. I needed to see them healing because the world told me it would get better and I did not see better in my future.

I didn’t know what to expect, but I knew what I wanted to see. I was looking for someone like me: someone in pain, hurting, and feeling helpless. I needed to know these things I felt were not abnormal.

My first year at Hope and Healing was somewhat of a haze. I mostly remember that I found myself in the company of others who were dealing with loss. It gave me hope to know that I was normal in my grieving process. I stayed quiet and cried a good bit, but I didn’t feel alone. On the last day we were asked to fill out a survey that asked if we would attend the following year. I wrote, “maybe not” because I felt like I had gotten what I needed.

I thought I was becoming an expert at grieving and braced myself for Christmas because I knew it would be a hard time of year. But December was unbearable without my sweet Janae. I felt all alone again. When I found the invitation to Hope and Healing in my mailbox the following year, I knew I needed to go back.

This second year was much different because I was in a different place. I was more at ease. Unlike the previous year where it took everything I had to keep from crying, I spoke and told stories about my daughter. I actually listened to the speakers and heard what they were saying this year. I was so glad that I could open my mouth and share this time around. After one of the sessions I even met a young woman newer to grief than me. We talked and I felt like maybe I was able to help her.

CURE Childhood Cancer’s Weekend of Hope and Healing has done so much for me that a simple thank you is not enough. To know that I am not alone in this journey has been more healing to my heart than I could have ever imagined. CURE has been a light in my darkest of days. To those who have hosted and attended the event, you have helped me at a time when I felt helpless.

Legacy of Love

As we sat down with Arlena Pou, our intention was to learn about last year’s Legacy of Love Day, which was the first she had attended. In the end, we learned much more about her son, Herbert, than we ever did about her experience. And that’s okay – because even nine years out, some things just need to be said.

Herbert Shaw, Jr was nineteen years old when medulloblastoma took his life on February 10, 2008. He was a drum major in his high school marching band – a popular boy who loved church and shared his gift of music wherever he could. He was a thoughtful and kind young man who left his mother a mission to grant scholarships to brain tumor survivors.

His loss also left a void in Arlena’s life that she knew she couldn’t fill.

“You don’t get over this,” she said firmly. “I don’t expect to ever get over it and I don’t expect anyone to understand that I won’t ever get over it. In a way, I don’t even want to get over it because I refuse to forget my child.”

Arlena attended CURE’s Annual Weekend of Hope and Healing several times and there she found a community of support. But as years went by, her stage of grief was different than many of the parents who had so recently lost their children. When she first heard about the Legacy of Love Day, she was slightly apprehensive but decided to give it a try.

“I needed to reconnect with my co-grievers who share in this community,” Arlena said. “It ended up being a day that revived me and kept me going. It is a safe place to share your heart or say nothing and take it all in.”

The goal of CURE’s Legacy of Love day is to continue to allow bereaved families to gather together in fellowship while celebrating and honoring the lives of their children in a more relaxed, recreational atmosphere. Families hear from a speaker whose topic is relevant to the grieving process of parents who are further along in their grief journey and the day culminates with a memorable candle lighting ceremony.

“The day was very fulfilling for me. I loved reconnecting with friends, sharing Herbert with them, and meeting others who have had this same experience. I also appreciated leaving with something tangible so I could always remember the weekend.”

Like Arlena, we understand that you will never get over the loss of your child. There will always be things to say. If you are further along in your grief journey, we would love for you to join us at CURE’s Legacy of Love in the future.

For more information, please email Lisa Branch at [email protected].

 

 

 

 

A Mother’s Hope and Healing

My family’s grief journey started only a year and a half ago. What I found at CURE’s Weekend of Hope and Healing was a safe place for my family to grieve, cry, laugh, learn, share, and make new friendships. In short, I am grateful for the care, connection, and clarity I get from the weekend each time I go.

 

CARE

I can only speak for myself, but once I become a bereaved parent my perspective on life and relationships changed drastically. I lost some friends, gained new ones, but quickly realized that a lot of time I was grieving alone. And when I was feeling desperate and wanted to call someone, the list was pretty short or non-existent because I just wanted someone to listen without feeling sorry for me, or giving advice, or getting upset themselves. I wanted someone that truly cares about my story and is able to just be there without judging my grief. And then I went to the Weekend of Hope and Healing and felt so grateful to be in a place where I could be me and would be heard, not judged, and just listened to. I realized I was lucky to have a place and people who cared and who provided not just a safe place for me to grieve, but who genuinely cared about my well being and my story, my life, and my family.

 

CONNECTION

You probably heard it by now if you know a bereaved parent: it is a club no one wants to be part of but once you are in it, you are so glad that there are others who understand your pain. For me, personally, this connection I get at the Weekend of Hope and Healing with other families is one of the best things I find each time I attend. Hearing that a mom is going back to school to be a nurse and seeing her excitement of following her newfound dream, or seeing a mom who found a new love and is expecting her rainbow baby, getting to know newly-bereaved moms, and hearing from moms who have been there for ten-plus years and receiving their words of hope and healing is something you do not get in your everyday life. And it is so much more real and meaningful to connect with these parents who know the pain and struggle of your days as this is your new world. These are your people – your new tribe.

 

CLARITY

The last, but not least, is that I always learn better ways to cope with my grief at the Weekend of Hope and Healing. Counsel, experienced speakers, workshops, conversation with others, and time provided to focus on my grief and struggles usually provides newfound clarity in how to tackle my issues in the future. I know grief is not curable and I do not expect to ever be cured from it. I know I will be grieving my whole life, but just seeing how my experience changed from last year to this year and how much “easier” this year’s experience at the weekend was gives me hope that even though my heart might never completely heal and be whole again, my grief can be lighter and different and that it is okay to begin healing and feeling better.

So I would like to thank CURE for all they do but especially for all they do for us bereaved parents as what you give us is truly priceless. We love you so much.

Ana Kucelin is a wife and mother of two children: Kalie, who is five, and Bianka, who was diagnosed with brain cancer at the age of four and passed away after an eighteen-month battle on July 29th, 2015. She is the Menu and Wellness Specialist for Decatur City Schools.

 

 

 

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