Finding Support - as you care for your child with a serious medical condition

Finding Support as you care for your child with a serious medical condition

About This Magazine

It’s easy to feel isolated and alone as you navigate your child’s diagnosis.

Even your best-intentioned family members and friends may not know what you need – in words and deeds. And you may feel it’s easier to stay hunkered down to yourself and in your home.

But isolation is not typically helpful. The need to be connected is a part of human nature. Finding the support that works best for you as you care for your child and family is important.

Within these pages, you will find information on where to find support* to help you maintain and even build new connections and support systems.

*Support from people in your family, network and community. This guide does not address finding financial, practical or medical support.

FINDING SUPPORT

Table of Contents

The Ring Theory of Support..........................................................1 Finding Support Within Your Partnership....................................3 Finding Support from Extended Family and Grandparents........5 Finding Support from Friends......................................................7 Finding Support in Your Faith and Spirituality............................9 Finding Support Within Your Local Community..........................11 Pros and Cons of Social Media......................................................13

TABLE OF CONTENTS FINDING SUPPORT

The Ring The Ring Theory of Support is a helpful framework for understanding where to seek support and whether to consider yourself—as the primary caregiver of your child—as a source of support for others.

The Ring Theory was developed by clinical psychologist Susan Silk. As illustrated on the next page, you and your child (and your parenting partner if there is one) are at the center of the circle. Your closest trusted family and friends are in the next circle out. More removed friends and family are in the next circle out from there.

You in the center ring, and inner rings, can confide in and ask for support of those in outer rings, and those in outer rings should offer only comfort and support to those in the inner rings. In other words, it is not your job to console your mother or friend if they are distressed about your child’s illness.

In short, it is COMFORT IN, DUMP OUT.

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Theory of Support

Source: Illustration by Wes Bausmith

Resources Ring Theory Helps Us Bring Comfort In

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Finding Support Within A child’s serious illness impacts a parenting partnership in many ways, prompting the parents to discover new means of coping and communicating.

Parenting a child with a serious medical condition can be all-consuming. It can also be an opportunity to grow together. It is important to recognize— even anticipate—how this responsibility will challenge you and your relationship. Staying committed to and nurturing the partnership, as much as you are able, may help you find even greater strength and courage to go forward.

You and your partner can better support each other when you openly acknowledge what you each are contributing, and when you acknowledge that you are in this together. Also, by creating written care instruction sheets and checklists that you both can refer to will provide a greater sense that you are working together towards clear and common goals for your family.

“To suck it up and say, yeah. I need help; somebody needs to lift me up. We’ve had to do that. We go see someone who has been tremendous and has been a great help. We talk about so many issues and believe it or not it even helps in the care of your special needs child.”

– LJ, dad of Rachel

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Your Partnership

“We’re approaching our relationship as friends that are best friends that support each other. He is my best friend. He is the person that I trust on everything…it is a lot and it is a lot of stress.

Marriage with a child that’s complex, special needs, and now on top of it terminal is a whole bag of crazy. And we are still together because I think we learned to be friends and respect each other and recognize that this is what we are doing it for. We are in it together.”

– Jeanette, mom of Frankie Jr.

CPN Resources Unit: Marriage/Parenting Partnership Guide: Strengthening Your Parenting Partnership Watch: The Marriage/Partnership In the Room: Dyadic Coping

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Finding Support from Extended family members, including grandparents, often find that the serious illness of a beloved child brings out their most well-intentioned impulses: to love, to support, to find ways to express solidarity with the family.

If you are lucky enough to have grandparents and extended family who live nearby and who want to help out, lean on that support as much or as little as your family needs.

When you set expectations on what is and is not helpful, you are helping guide your extended family and grandparents in what they can do to help you.

“Havi’s posse originated completely spontaneously. After Havi’s diagnosis everyone was just here…we never had to ask for anything. They just showed up.”

– Matthew Goldstein, dad of Havi

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Extended Family and Grandparents

“I had a mental calendar in my mind, so I wasn’t there physically but I was aware. In doing that I would check in….”

– Robin, grandmother of Talia “We spoke daily. The biggest support that she was to me was tracking me from afar. Always being available. She (Robin) was responsive to me.”

– Carla, mom of Talia

CPN Resources Unit: Grandparents/Extended Family/Friends Guide: For Grandparents and Extended Family of Children with Serious Illness Watch: Grandparents and Extended Family Listen: Becca and Christine - a grandmother and mother reflect on little Emma 6 FINDING SUPPORT

Finding Support Having support from friends can help to lessen the isolation you can feel while caring for your child. If you already have a circle of friends, they most likely do want to help, but may not know what to do. And for you, it can sometimes feel like one extra burden on your shoulders when you have to make the call, send the text or even think of the thing that would help you.

So, you may find yourself working to get it all done instead – “I’ll just do it myself” – and feeling overwhelmed and unsupported.

Fortunately, there are things you can do to help friends who want to help be helpful in ways that can have a real impact on your day-to-day.

Friends can choose what they can handle and what tasks they might be able to do to help: some might run errands, some might make food, some might help with babysitting or with your other children, some might just listen to you over the phone or on a video call.

“Have one person you can call and complain to. Or somebody who you know will boost you up when you are down. Who can remind you of all the good things you have done even if you feel like today you have done something wrong. Have at least that one person you can reach out to.”

– Paula, mom of Lydia

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from Friends

“I was fortunate enough to have a few really, really good friends, just like two in my life that had walked this path and survived it. And that was the key for me, they survived it. Because I knew I needed to survive it too.”

– Brenda, mom of Sam

CPN Resources Read: A Rare Friendship Watch: Your Circle Will Change Top List: 8 Tips on How and How Not to Show Up In the Room: What It Means to Just Show Up 8 FINDING SUPPORT

Finding Support in Some parents coping with their child’s illness find themselves in a crisis of faith. They strive to understand why the illness has occurred and what can be done to change the circumstances–to make things “right.” Others find that their faith is strengthened as they invest trust in something outside their control. They may even feel that they are being tested and must respond in faith.

If you are part of a faith community, you may find that fellow members are a source of strength and help for you. As with family, however, members of the community may not really know how to help or support you. They may say the wrong things and you may feel judged and turn away. That is okay. What matters is that you take care of yourself and find support where you feel most nourished.

If you have them, you may seek solace in your faith traditions, including the rituals that are part of these traditions. Just as family history and culture influence decisions and coping, so might your religious upbringing or spiritual connections influence your values and beliefs. This may help you find support within a different community.

“Everybody has their own flavor of God. So that's how I see God. I feel you don't put him in a box and say, he's this way.

He's so grand. I feel it's an insult to put him in a box and say he doesn't like this.

For me, it's more about the relationship and not the religion.”

– Crystal, mom of Sydney

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Your Faith and Spirituality

“Our faith community really held us up.

When it was hard to pray they would pray for us.”

– Katherine and Nate, parents of Joey

CPN Resources Unit: Spirituality Guide: Spirituality and Caregiving in Pediatric Illness Top List: 8 Things to Understand When it Comes to Spirituality and Caregiving in Pediatric Illness Watch: Why Spirituality and Religion In the Room: Does spirituality and/or religion help?

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Finding Support Within Parenting a child with a serious medical condition can be all-consuming and can feel isolating. You may turn to your disease community or local support groups where you may find have others caring for a child with a serious medical issue and who are going through something similar to you. This can help you realize that you are not alone and there are people walking the same path.

However, you may also find that the support groups that seem like they would be a good match are not in fact making you feel better. If this is true for you, understand that this is okay. You will find support in other ways.

“I think it is human nature to have a diagnosis and want to find people with that same diagnosis. I think that makes total. If you are not finding what you need in those communities, I think it is important to keep looking and find it somewhere else. It could very well be right there in your house. It could very well be another family.”

– Sarita, mom of Elijah

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Your Local Community

“Finding different pockets of people, and really working to not isolate. As I show up for myself, I invite other families and other people to show up with me.”

– Naomi, mom of Noah

CPN Resources Watch: Sarita and Kareem talk about finding outside support Watch: Naomi talk about grief and finding support

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Pros and Cons Social media warrants its own page given the huge role it plays in society today. It should be noted that there are both pros and cons to social media and it is an individual decision on whether you feel social media is something that feels helpful to you in your caregiving journey. Social media provides access to information, which can be overwhelming to some and comforting to others.

Some feel that participating in social media is a burden in that it is something else to keep up with. It can be added pressure and one more thing on your already full plate. But for others, the connections and friendships they build through social media are worth it.

Here other parents reflect on how they used social media in their care journey.

“It did become a source of building real friendships with people and having real connections with people. It also made it very easy to allow our extended friends and family to connect with what was going on with us.”

– Kerri, mom of Kai

“The voices on social media can be incredibly helpful when it comes to finding resources, being a sounding board, just highlighting what’s available for this particular condition. But they can also be hurtful in generating guilt, because you are not going to use some of those resources that people shared…”

– Dr. Natasha Henner 13 FINDING SUPPORT

of Social Media “I did find some online Facebook groups. They were not for me…the conversations that were being had – it wasn’t what I was looking for at the time…I found that even trying to respond to questions…it felt like a sense of competition…”

– Sarita, mom of Elijah

“Support is key. Reaching out and finding groups, that for me in particular was a lifeline. Being able to communicate to other families and get their perspective on different treatments or medications.”

– Kate, mom of Brook

CPN Resources Watch: Pros and Cons of Social Media Watch: Dr. Natasha Henner, perinatal and palliative care doctor at Lurie Children’s Hospital talk about social media 14 FINDING SUPPORT

About CPN Purpose To orient and empower parents and others caring for children with a serious medical condition, by providing resources and tools that reflect the experience and perspective of families and clinicians.

Vision Parents and others caring for children with a serious medical condition have confidence that they are doing the very best they can for the child and family.

What We Offer CPN is a nonprofit organization that provides curated digital resources and programming to help caregivers advocate for children living with serious illness and navigate the illness journey. At the center of CPN are parent and clinician voices that illuminate the lived family experience and focus on psycho-social and emotional needs, regardless of diagnosis and without bias.

CPN resources include videos, podcasts, newsletters, a blog, social media posts, educational guides and learning pathways written for families, and a clinician portal offering materials for use in self- and colleague education. Programs include virtual events, and virtual and in-person presentations to clinician audiences, industry and patient organizations. CPN also partners with others to bring the family perspective to clinical research and a wide range of communication (or media) outlets.

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