Parent Mentoring: You Are Not Alone

Parent Mentoring: You Are Not Alone

Authors note: The term child will be used regardless of the patient’s age. The term parent will be used regardless of the type of family relationship.

There are moments in my life that I will never forget. Most of them represent important milestones like getting married, the birth of our sons, the sudden death of a good friend, and the passing of my dear parents. I can recall them all. However, there is another moment I will never forget: the day of my son’s cancer diagnosis. Since the age of 15, Steven has been diagnosed with four different cancers at four different times in his life. I am happy to say that he is 33 years old and doing well.

During critical times in his cancer experience, I recall feeling deep stress resulting from my loving compassion for my child. It was like some sort of symbiotic relationship where his treatments were happening within me as well. His radiation fried me. His surgeries increased my maternal pain. The chemo, well, immobilized me as I witnessed that toxic liquid slowly flow from the pump to the tubes that connected to his port and bloodstream. I would sit, pray, or read scripture while remaining in a state of stillness, unwilling to leave him alone

During my son’s treatments, I found myself spending hours, days, and weeks in the hospital being a caregiver and gofer. You know that person, who provides support, has great listening skills, and possesses creativity in hospital room decorating. Yes, I understood the importance of remaining patient and calm. And I avoided interacting with people because I really had nothing to say (small talk is not my thing) and wanted to avoid people who asked inappropriate questions

 As a person who has been trained in the social service, counseling, and early intervention professions, I have researched and reflected on the role of parent as caregiver with the hope of helping others in similar situations.

Parents as caregivers require many talents.

A parent as caregiver is someone who sits and prays and smiles and listens while your child is in treatment and requires a special type of energy. It’s that inner energy where attention to detail is needed, but not necessarily on your own terms. You, the caregiver, are now someone who is needed more than ever. Your child’s agenda is your agenda. Discussions on treatment protocols are needed. You learn new words like doxorubicin, cisplatin, methotrexate, ifosfamide, and etoposide. You even learn that your child’s blood type can be changed in preparation for his bone marrow transplant. Amazing medical advances are simultaneously intellectually intriguing and mind-blowing. And while all of this is happening, you are buried in this emotional overload where important questions come to mind. Are you able to let go of the world around you and focus on your child? What about your partner or spouse? What about the other children or relatives who may regularly rely on your help? What about work? During this time of initial diagnosis, the mind spins faster than the speed of light. In other words, everything that you planned up until that moment is about the change. And that moment requires much emotional, spiritual, and intellectual strength.

During this time, you, the parent, may need someone to talk to who has already been there. Someone to ask questions about what it’s like to parent a child with cancer. To ask questions, that perhaps you might be afraid to ask. (Is he going to live?)  There are people who have had these experiences and thoughts.  There are people who function in that space of experience. There are people who want to help you during this time because they’ve been there.

People who have “been there” are often called mentors. They are the sherpas, or guides to assist you, the parent, on that journey. They can tell you it’s okay to be afraid or impatient or troubled. Someone who can help you sift through thoughts, answer questions, or recommend that you talk with your medical team. Mentors are not doctors or nurses. They are people just like you who understand.

Parent: “Why did this happen?”

Every parent has a unique story. The mentor knows this and can empathize with you. They will share in your sadness and fears. They may also help you navigate something as simple as getting a parking pass. Whatever the issue, it’s the goal of a parent mentor to act with composure and objectivity while providing the parent support and empathy. The phrase “take it one day at a time” may be said, and it might seem like a cop-out, but in the world of cancer, it’s part of that new reality. You see, we truly need to live in the moment, appreciate what is, and try not to worry about tomorrow. But we know that it’s always easier said than done.

Connections through the heart.

Parent mentors are not advice givers. They will, however, respond to questions with comments like, “Check with your oncology team” or “Talk to the doctor, nurse, PT, and/or social worker.” Medical advice is not provided, nor comparing one’s cancer with another’s. Upon request, stories are shared but with the understanding that “my story is not your story.” The parent-to-parent relationship will hopefully go beyond the basic storytelling and move into a mutual understanding. An understanding that it is okay to fear the unknown and to remember there is always hope. There is this connection of understanding that can only happen with a person who has been through something similar. The parent-to-parent relationship is one of heart-felt familiarity and empathy. It is that mutual ache.

Parent: “He just won’t listen to me.”

Beyond the pain and fears of the unknown, parents may complain or ask about better ways of communicating with their child. Obviously, each parent–child relationship is unique. So, a parent mentor may suggest to “meet the child where they are at emotionally, developmentally, and or psychologically.”  In the world of child development, parents are often informed that this approach is a healthy way of engaging with the child (from infant to adulthood). As parents, we learn that if we want to interact, we need to make sure the child is listening, or is motivated to communicate. Again, without acknowledging and appreciating the child’s current health and emotional state, communication may be challenging.

Patient: “I must move in with my parents, drop out of school, quit my job.”

It is not uncommon to experience a sudden change in the parent-child relationship. There may be old or new triggers that could generate rapid-fire arguments and/or deep sadness. Tough interactions between parent and child can be due to school, work, or living situations being altered. Socializing with friends has become something of the past. Independence has been taken away. The lifelong career goal is no longer an option. That long-planned special trip is postponed. We know life can be filled with disappointments, but at that moment in time, parents ache for their child and want that sadness or regret to go away.

Keep in mind what is happening in your child’s life at this moment in time.

“Follow their lead” is a direction told to parents of children when they’re attempting to discern how to intervene during play. Follow their lead and they will demonstrate to you what they know, how they feel, etc. When you follow your child’s lead (regardless of age), you are providing them support. You are demonstrating respect and giving them a sense of freedom yet being on-hand to assist when necessary.

Get to know the medical team.

As I mentioned earlier, parent mentors understand that the concern for the child’s health and well-being is a top priority. Therefore, mentors will often recommend a parent speak to a trusted member of their medical team for questions or advice. Parent mentors do not and should not provide medical information. Regardless of the question, it is most important for a parent to express their concerns to their medical team members. There is no dumb question.

Who’s making the decision here?

Once a child is 18 years old, their decisions about treatment, visitors, and the dispensing of medical information are their own. Parents are encouraged to ensure good communication with their child. It’s about mutual respect and support that enhances communication. If you have a healthy relationship with your child, you are in luck. Talk, and let them know you love them and want to support them.

So, why am I writing this?

We are all in this together. We parents have a shared experience that none of us ever wanted. We also need support and understanding. I became a parent mentor because I experienced what it meant to feel alone and not understood. With my son’s initial diagnosis, I needed support from someone who had already made the journey to the other side. I am so appreciative that organizations have been created to provide such a free service to families who are in need and want help.

The names of programs offering parent mentors are listed below. Note that your hospital may also provide their own parent mentors, so ask your social worker for more information.

Please remember we parents are not all the same. Our needs and experiences differ, therefore, what works for me may not work for you. So, be kind to yourself and ask for guidance if you need support. After all, we parents are in this together!

Here are links to organizations of which I am familiar.

Imerman Angels: https://imermanangels.org

4thAngel: https://4thangel.ccf.org

Make It Better for Kids with Osteosarcoma: https://www.mibagents.org