BY BLYTH LORD

If you had asked me how I felt when my 6-month old daughter was diagnosed with a fatal disease and we learned that she would die in early childhood, I would have told you: I feel like I’m about to fall through the floor and I can’t believe I’m actually still breathing.

If you had asked me what I was worried about, I would have told you: I’m worried she is going to suffer, I’m worried about my older daughter, I’m worried my marriage can’t sustain this, I’m worried I’m going to fail everyone.

But if you had asked me what I needed, I wouldn’t have had an answer. I might have screamed at you, “How the hell do I know what I need?! I need this to be a bad dream from which I will wake up.” Or, “I need a cure. NOW.” If pressed, I would likely have said, “I need help addressing my feelings and my worries.” In short, I had no idea what specific help I needed or might need when the shock wore off (if it ever would). That’s because I had fallen into a scary foreign place with no preparation and no guide book. I was disoriented and felt powerless. I also didn’t know what to say or where to turn: not only didn’t I speak the language of this land, I didn’t know if there even was a language.

And herein lies the kernel of the challenge: In these early days after diagnosis, it is essentially impossible for parents to articulate what it is they need, beyond a treatment or cure for their child, because they don’t understand anything about where they are or what they need to do. They know only that they feel sad and afraid and worried and alone and lost. And as they arrive at new places along this path they’ve never travelled, such as a decision they have to make or a new plateau for their child, they are disoriented and word-less all over again.

I have learned from one of my smart and dear friends that in the business world this is called an unarticulated need.

It helps to understand what an unarticulated need is by looking at its opposites: for example, Thirst. When we are born, we learn early what thirst feels like. We understand it as a natural urge and our parents give us the language to say how we feel: “I’m thirsty.” We also learn that there is an immediate solution to this feeling, “I need a drink.” And then, as we get older, we even learn to be particular about the drinks we seek, as in, “I would like a Coca-Cola.”

We’re even taught how to respond to typical potential emergencies. We learn the Heimlich maneuver in the event someone is choking. We learn CPR. We learn how to respond to a fire: Call 911, walk to the nearest exit, or drop and roll.

By contrast, having your child diagnosed with a life-threatening illness is unnatural and extreme. Therefore, no one has taught us how to describe the alien feelings that arise. And no one has prepared us for how to respond to the emergency.

Courageous Parents Network is all about responding to that unarticulated need, about offering the support and help families need, even as they don’t know exactly what that is. We are founded, directed and staffed by parents who have cared for children with life-limiting illnesses. We have a sense of what parents need because we have been there. And now we’re learning how to actually frame what we offer so that parents who have been blindsided recognize the offering as help they seek, even as they don’t have the language to name it.

Part of this learning has involved talking with two different groups of people: 1) medical providers who work with families but have never had to ‘market’ their help (when a child is sick, parents know to seek out help from medical experts); and 2) marketing experts who know a lot about human behavior but have never worked with parents of sick children. (Side note: I am not talking about people who work in marketing departments at hospitals, promoting treatments and cures. Courageous Parents Network is interested in what happens beyond and on the edges of treatments and cures.)

We recently learned of 5 types of support that matter to people, which we thought would be interesting to share with our followers. Why? Because the more knowledgeable and articulate you can be about your experience as a parent caring for your child, the more situated you will feel and the better able you will be to advocate for your child. In short, we want to give you the language for the new land in which you are operating. These 5 types are:

1. Emotional support: feeling understood and accepted no matter what you are feeling
2. Informational support: being directed to learning or finding information
3. Tangible support, practical support: accomplishing tasks (for instance, getting a ride somewhere or receiving a home-cooked meal)
4. Self-esteem, affirmational support: feeling valued (for instance, at work, in family, in community)
5. Belonging support: feeling part of something, a connection to a community

• from the Benson-Henry Resiliency curriculum for Stress Management and Resiliency Training (SMART). Benson-Henry Institute for Mind and Body Medicine at Massachusetts General Hospital.

Being an online community, we can’t offer help with meals or shopping or rides. However, Courageous Parents Network is committed to the other four of these five:.

1. Emotional support – in videos, blog posts and podcasts, which feature the voices and perspectives of fellow parents, parents can see that their emotional challenges are shared by others and can benefit from the insights of parents who have gone before.
2. Informational support – guides and videos provide practical coping tips and strategies from experts and fellow parents
3. Self-esteem, affirmational support – through seeing the example of other parents who have done the hard work in this strange land, parents can imagine and believe that they can do it too; better yet, they can see the strength in what they are already doing. Courageous Parents Network celebrates all that parents do for their children. We are all about the validation.
4. Belonging support: CPN is about helping parents see that they are not alone; rather, they are part of a large virtual group of amazing people who share similar struggles and triumphs. And at the concrete level, CPN unites parents in different states who share a commitment to advocating for palliative care and the needs of families and children.

So, what sort of support do you need? We hope we can help. Please be in touch. connect@courageousparentsnetwork.org