Each child is an individual and every family has its own particular patterns, needs, ways of coping and values. Care choices that feel right and work for one family may not feel right or work for another. Thus there is no one formula for caring for a child with a life-limiting or threatening illness. (Yes, the title is misleading!) There are no ‘right choices,’ which also means there are no wrong ones either. However, I am bold to strongly encourage parents to include three ingredients in the care formula they develop for their family, regardless of the specifics of their child’s illness and the treatment protocol. These ingredients are, in my lived experience and that of other parents with whom I have spoken, incredibly helpful in ensuring the greatest peace of mind and spirit and minimal regret when making choices for the child. The addition of these ingredients can have lasting impact on the family experience and how the family writes the narrative of their child’s illness journey, life, and, if it occurs, death.
Ingredient #1: Pediatric Palliative Care If you have poked around the Courageous Parents Network web site, you know that promoting pediatric palliative care is central to our work. Why? Because we have experienced first-hand the value it adds to the child’s care plan and the impact it has on the entire family. My daughter Cameron received palliative care from her primary care doctor and a team of nurses who cared for her at home. I could go on and on about what it is and why it matters, but you can read about it on the CPN site. However, if you go no further than this blog, here is what I would have you know most about palliative care— Palliative care is NOT END-OF-LIFE care—that is hospice care. It does NOT mean you’ve given up hope for survival or quality-of-life. Quite the opposite: it is an extra layer of care that ideally begins at diagnosis and that helps a family identify their care goals for their child and their family. It looks beyond the disease itself to support the psychological and emotional and spiritual needs of the entire family. It reduces patient and family stress. Its goal is QUALITY OF LIFE. Palliative care specialists share a family’s hope that the child will survive and they also work to hold and pursue the family’s care goals so as to keep the parents oriented when things start feeling crazy or confusing. Palliative care just makes everything better.
Ingredient #2: Grief Counseling You may say that therapy isn’t for you, or that you don’t have time to take for yourself, or that you’re in coping mode and aren’t officially grieving. I would encourage you to think otherwise, to open your mind to the value that grief counseling can offer you, your spouse/partner if appropriate, and thus, by extension your child and entire family.
When your child is diagnosed with a life-limiting illness, you immediately start grieving. Grief counseling is a place to park your sadness and anxieties and to work through your concerns and wishes to figure out what you really want for your child and family. It is a place to grieve, to release your emotions, and to express your wishes. It is an opportunity to get really really dark and to then find signs of light. It is a place for two parents to wrestle with their respective differences in a safe and facilitated environment and hopefully find common ground.
Grief counselors come in many forms: psychologists, social workers, hospital chaplains, ministers, rabbis, other spiritual leaders. You’ll need to find one that works for you. There are some (funny) bad stories out there from parents who had a few false starts in their quest for a grief counselor. My husband’s and my first attempt, for example, was a woman who met us in her home office and started dead-heading her potted plants while she pretended to listen to us. She also told us that she understood what we were going through because her granddaughter had had a scare with illness but luckily the test was a false positive and she was fine (hello?!). Another parent shared with me that in her very first attempt at counseling with her husband the counselor wanted to know what impact the son’s illness was having on their sex life! (Hellooooo???!!!!) Please, laugh at these stories but do not be daunted! We found a fabulous counselor on our second try and we credit her with keeping us sane, keeping us married, and giving us a road map for caring for our daughter all the way through to her end-of life and beyond. She also counseled our older daughter. We first saw her once a month (and turned it into a date), then every other week, and by the end, we were seeing her every week. (I like to joke that I would have moved her into the house if I could have!) There’s no requisite number of visits, of course: once a week, once a month, every-other-month, on-demand as needed. What matters is that you have someone you like who practices active listening and helps you hear yourself, hear your spouse/partner, and find your way. Remember, like the flight attendants say on the airplane, you can’t truly take care of your child if you’re not taking care of yourself. Counseling is a gift you give yourself, your partner, and your family.
To find a grief counselor, check with your primary care doctor, the palliative care team, the hospital where your child is being seen, your place of worship, your friends. It can take a few false starts but I promise you will thank yourself for the effort. Grief counseling helps you feel like you’re in control and truly parenting.
Ingredient #3: Other parents who are walking in your shoes Parents caring for children with life-limiting illness need the company and counsel of those who they know really really really understand, people who will answer questions head-on without reservation or platitudes, who will speak frankly about the hard stuff—like how they feel trapped or what end-of-life looks like—who will use inappropriate humor unapologetically to offset the pain. These people are not the professional clinicians who, with rare exception, have not actually walked in these parents’ shoes: rather, they are fellow parents whose children are also living with a life-limiting illness. And it doesn’t even need to be the same diagnosis. The symptoms are only a piece of the puzzle. The emotional roller-coaster, the fear, the sadness, the anger, the anxiety, the impatience, the daily grinding stresses are the other big(ger) piece that all of these parents have in common. In her memoir, The Still Point of the Turning World and a related New York Times op-ed, Emily Rapp refers to these parents as Dragon Parents: “To prepare throughout a child’s whole life for the loss of that boy or that girl, and then to live with it, takes a new ferocity, a new way of thinking, a new animal.” Ideally, Dragon Parents can find each other in actual support groups where they meet periodically to share and support each other as equals. One of CPN’s advisors refer to the active dynamic in peer support as ‘horizontal lines of communication.’ In my own personal experience, we found this peer support immediately in my brother- and sister-in-law whose son (my nephew) Hayden had the same degenerative disease and was a year further along. We also found it in the annual family conference for National Tay-Sachs and Allied Disease. But if physical groups aren’t a possibility, Facebook groups can fill the gap and bring you into community with like parents around the world. If you can find yourself such a group or even one or two parent allies, it will be a life-line that helps to normalize the abnormal.
If we could, Courageous Parents Network would personally find each family a palliative care team, a grief counselor and a parent peer-group. Unfortunately, this isn’t possible, and so Courageous Parents Network tries to bring these resources virtually to parents wherever they are: at home or in the hospital. The CPN site includes information about “anticipatory grief”, the value of palliative care, what “complicated living” looks like, and a framework for making difficult decisions. Our video library features a gifted and experienced grief counselor who frames and normalizes the broad range of issues that parents confront. And perhaps, most importantly, the library features parents talking about their experiences and feelings around these issues, providing a virtual and asynchronous support group. (We are also building a CPN group on Facebook. The goal of all of these resources is to shine a light on the dark places and help parents see that they are not alone and that they can do the hard and important work of caring for their child all the way through, with grace and open hearts and faith.
Author: Blyth LordSpecial thanks to Blyth Lord, Founder of the Courageous Parents Network, for allowing Four Square Clobbers Cancer to reprint “#8—Three ingredients for the best Care Formula ever.” From our point of view, we believe there actually are four ingredients and she may have over looked the forth. The forth ingredient is Courageous Parents Network.
Related article: Palliative Care – Misunderstood