Family & Patient Support

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].

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.

Welcome December! Welcome festive holiday cheer, brilliant lights, fanciful presents strung up with ribbons and bows. Welcome mittens, toboggans, and snow… please come snow. Welcome singing, joy, and toasty mugs held close to the lips with both hands. Welcome stockings, trees, and porcelain finery preserved for generations and proudly displayed for one month before being packed back up. Welcome friends, family, and warm feelings for all humankind. Welcome tears…

Wait, what? Tears?

Yes, Tears. All of the aforementioned pleasures that warm most of us can cause angst, dread, and tears for those who are hurting. Unfortunately, in our childhood cancer world, too many are forced to face this season without the children who make it so special. But we don’t have the market cornered on pain. Many are dealing with heartbreak and struggles. While December is a season of love and giving, it also seems to magnify pain and loss. Maybe that loss is a child, a spouse, a parent, or a relationship that they thought was forever. If we pull back the smiles like an old winter coat, we all have friends who are hurting.

So what can you do during December to comfort your hurting friend?

Of course, there is no pat answer for every situation. No two hurt alike and no two respond to the holidays in the same way. But as a father facing his second December without his daughter, I want to offer five tips that may help.

1 Invite but don’t expect – We hurting run a fine line. We don’t want to be left out of every social occasion, but the thought of being amongst revelers at a holiday party can feel completely overwhelming. So while you might get turned down, please send the invitation. If they accept, set the place but also know that the grief ride is full of sudden twists and turns that might make your friend back out at the last minute. If that happens, the last thing they need is a guilt trip – their ride is wild enough.

Another note is that my wife and I have turned down invitations simply because we don’t wish to bring a somber tone to a party. That may seem ridiculous, but we have seen the tenor of room change when we enter because friends are either concerned about our emotional state or worried that others will say or do something that will upset us.

2. Offer tangible help – Maybe you can’t buy an expensive gift, but can you hang outdoor lights? Can you afford a couple of hours to help decorate a tree that otherwise wouldn’t make it out of the box? Could you spend an afternoon wrapping presents? Could you offer shopping advice to a man who has lost his wife to help minimize a letdown for their children? This is the action side of love. Love does! Love molds unique talents into lavish gifts. Doing love doesn’t have to be grandiose or expensive and is often best when anonymous.

3. Speak their name – There is a common theme among my fellow grievers: we all live in constant fear that our loved ones will be forgotten. After the shock of the loss recedes, this is the next frightening and painful thought that keeps us up at night. The holidays magnify this fear. You can help by simply speaking their name. Do you remember a funny story about a holiday gone by or did you find a picture that made you smile? Share it. Send a note with a special memory. You could even look for an ornament that reminds you of your friend’s loved one. Did they love penguins, princesses, or tools? An ornament would be a special touch that tells your friend that you remember.

4. Respect a decision to minimize – The holidays tend to turn our hearts toward home. Regardless of how much a grieving person enjoyed holidays past, there will be moments that are deeply and profoundly painful because that home is no longer intact. Every decoration and light brings the loss to mind. So please understand that a person who is grieving may identify with Ebenezer Scrooge, The Grinch, and Burgermeister Meisterburger much more than Bob Cratchett, the Who’s in Whoville, or Kris Kringle. They may not decorate at all and shun celebration – and that’s okay!

5. Give of yourself – Everyone likes shiny presents. But we who are hurting need your time more than anything you could wrap. It might be rebuffed, but a genuine offer of presence is more valuable than gold. Knowing that someone is available should the need arise could very well be the thing that gets your friend through the season. If called upon, come loaded with tissues and a tender shoulder – say little and listen much and know that you’ve given the best gift.

I can’t know your friend’s situation, but the overarching theme here is love and communication. Your friend is wounded by loss and the holidays often feel like coarse salt rubbed into the wound by a big, fat mitten. Tread cautiously, lovingly, and be there to share the happiest holidays possible.

Mark R. Zuccolo, Ph.D., LMFT

When parents are involved in the care of a child with cancer, they experience both positive and negative changes in their relationships, communication, stress, and their roles.

Emotions such as anxiety, guilt, anger, and distress ebb and flow during the course of the child’s illness. These emotions are felt and expressed by all family members, often more overtly by mothers and children. The child’s cancer  affects the family’s need for care, self-esteem, social interaction, and functioning. Consequently, parents may find it necessary to change or modify their family roles to cope with the demands of their child’s illness.

There are variations in the impact of the child’s illness on fathers’ and mothers’ relationships. While some relationships are weakened by these extremely stressful circumstances, others are strengthened during the cancer experience.

According to an extensive 2010 integrative review of parents of children diagnosed with cancer by DaSilva, Jacob, and Nascimento, time since diagnosis appears to be an important factor in the couple’s relationship. Many of the changes occur shortly after diagnosis. However, when the child has been ill for 1 year many parents report fewer changes in their relationships. After 2 or 3 years, many couples report positive changes. After 4 years or more, most parents note little to no additional changes. In times of the child’s remission, family life is likely to return to normal, and couples note a sense of their strengthened relationship. If the child’s cancer relapses, however, the entire crisis process can be reestablished. Some couples report greater emotional closeness, while others realize that their adverse circumstances simply reveal the marriage’s strengths and weaknesses.

High stress factors can also produce negative changes in couples’ relationships. Some mothers may feel that, despite a strong relationship with their spouse, the adverse and stressful circumstances generated by the child’s illness are weakening the connection with their partner.  The parents’ intimate relationship and sexuality has been reported to worsen for almost half of the couples surveyed. Many couples invest, at least for a time, the majority of their physical and emotional energy in their child’s illness, often leaving little or no time and energy for intimacy and leisure activities.

Difficulties in communication appear frequently in parents of a child with cancer. Healthcare professionals may be able to identify parents at risk for developing conflicts, communication problems, and lack of alignment between parents that could interfere with providing optimal care for their child with cancer.  If these symptoms are observed, they should be addressed, preferably in counseling.

Each spouse deals with the child in his or her own way and may feel that they cannot meet the other parent’s needs. Some mothers expect fathers to help when they feel overwhelmed with caring for the sick child and managing the daily routine and often jobs, as well. Fathers, however, may feel especially burdened by their jobs and may want down time away from work. These conflicting needs must be reconciled through communication and negotiation between the spouses, as they are both equally valid and heartfelt.

Fathers may find it difficult to acknowledge their weaknesses and vulnerability in moments of grief and loss. They may choose to repress fear and inner conflict, perceiving that they are socially expected to show strength and courage. Accordingly, many fathers may not share their uncertainties and feelings of difficulties with their wives because they may be afraid of appearing weak, preferring to be seen as the rock the family rests on.

Mothers may find that during the illness, their role as wife may be totally replaced by the caregiver role. We may see the fathers, who were not formerly directly involved in household tasks, starting to assume these roles, even when they have a full-time job.  Generally speaking, in times of crisis, mothers focus on involvement in the child’s life, represented by being physically present, while fathers advocate for and support their children and their wife.

Both partners need to be comfortable and flexible in dealing with these role changes by emphasizing the importance of working together in a partnership, as a team, independently of how roles are shared.  It is important to be emotionally available for each other, whether separated or together. Bonds are strengthened when the couple is together, and they individually suffer in each other’s absence. Despite the inevitable tensions, couples can share strategies for handling situations as they emerge, and they mutually provide encouragement and support for each other.