Practitioner's Perspective: We Can't Make It All Better

Parenting an HLHS child is, well, different. HLHS brings an entirely different set of parenting challenges and struggles. Sisters by Heart is grateful to Dr. Darci Walker who helps explain the struggles we may face, from a psychologist's perspective. Thank you, Dr. Walker, for lending your most insightful thoughts to our HLHS families.

Darci Walker, PsyD, Founder of Core Parenting

by Dr. Darci Walker

This child. This parent. This moment.

I remember the moment I stepped outside of the hospital for the first time with my firstborn son. I remember a feeling of sheer terror. I looked at my husband, and he looked at me, and we looked at this little thing in between us, and one of us actually said, “Really? They are just going to let us walk out of here with him? What the hell do we do now?”

The enormity of the future weighed so heavily in that moment. My job seemed impossible. I was unprepared and unqualified and unsuspecting. I needed to protect him. Keep him safe. Keep him healthy. Make sure that the world is safe and secure and he has all the goodness he deserves.

I knew, in that moment, that I was completely incapable of actually ensuring that his road would be completely smooth and that nothing bad would ever happen to him. And that realization hit me like a ton of bricks.

But, I was lucky. He was healthy and I was able to seek comfort in the fact that I could worry about impending doom another day. Right then, he was okay. I could breathe and let myself believe that I had more control than I really did. I would have some time to figure out what parenting is really all about. I could wrap myself in a delusion of control. Like the myth that my very kiss could make an owie disappear. And, somehow, that myth helped me through the early stages of parenthood.

Of course eventually, for me as for all parents, the myth would shatter, and the true depth and challenge of what parenting really is would become clear. For many parents it’s the first time your child gets hurt. Or bleeds. Or has an incredibly high fever. Or gets lost. Or gets bullied by someone. This is when some parents really figure it out, when the real truth of parenting sinks in. The powerlessness of it all. The truth that this little human, that came out of our bodies, is really on their own path. We are not in control of their lives and we can’t protect them from all things. No, our job is not to kiss away the owie. Our job is to be with them, no matter how painful the owie. Parenting is about walking impossible paths and tolerating impossible pain and supporting our kids through impossible limits. It’s not about making it go away. Because we can’t. It’s not about making bad things not happen. Because we can’t always do that either. It’s about being by their side. This child. This parent. This moment.

It’s in these moments of utter pain that we realize that all we can do is do the best we can to stay beside them and love them and give them every ounce we have, but in the end, every ounce won’t really be enough to eliminate all pain and suffering.  And while this is really true for all children from day one, many of us don’t have to learn the agony of that realization for some time.

But, other parents have to hit the ground running. Parents who have babies born prematurely or who have babies with medical issues, like children born with hypoplastic left heart syndrome, never have a chance to feel this calm before the storm. Parents who have babies that move from the delivery room to the NICU faster than a blink of an eye never have a chance to wrap themselves in a false sense of control and comfort that they can make everything all right.

Right from the start, these families are forced to watch from the backseat as their little person travels on their own path, surrounded by doctors and machines and tubes and acute needs. Right from the start these parents have to live with the truth that they can’t make it all better. That their kiss doesn’t really make the owie go away. And that realization is heart wrenching. There is so much anxiety, fear, depression.

These little people have a tremendously difficult road ahead of them. Their families have enormous pain to endure. And yet, there remains: This child. This parent. This moment.

If we can let go of our myths about what parenting means. If we can let go of our fears about the future. Just for a moment. Then we can realize that what this child, what any child, needs in this moment is a parent who can tolerate the pain and be there with them. By their side. Walking this path, this painfully difficult path. Holding them, rocking them, touching them, fighting for them, singing to them, smiling at them, crying with them, reading to them. That is parenting. This is parenting. This moment of connection and support and touch is parenting.

I worked with a family whose infant son died hours after birth. While they knew that their son would die soon, they knew they had a very important role in his life. They held him, they rocked him, they sang to him. They talked to him and whispered in his ear and cried with him as he died. This is parenting. This child. This parent. This moment. 

I can’t claim to understand the enormity of having a sick child. But I do know the difficulty of letting go of my expectations, my feelings that I have somehow failed my child, my feelings of frustration with a world that is unfair and harsh and cruel. I do know the pain of watching a child struggle with something that I can’t un-do. And I do know that sometimes, when all I want to do is crawl into my bed and hide from it all, what I need to do instead is just go be there with my child.

And I also know how amazing it feels when I can truly be there in the moment for my child. This child. This parent. This moment.

My child and me. Now. Touch, hold, connect, support.

That is parenting. I do know that the feeling of connection and strength and beauty that comes out of it is the most important thing in both our lives. Because while the kiss can’t make the owie go away, the connection in that kiss can give the child the support he needs to know that he can take the next step. What a gift. Parenting in its most pure and true sense.

Dr. Darci Walker, is a mom to two boys and Clinical Psychologist with experience working with families, individuals and children in a variety of settings. In 2010 she co-founded Core Parenting in Portland, Oregon and specializes in working with parents and the variety of transitions that occur during this amazing stage of life. From postpartum depression to relationship difficulties, career changes to identity reformation,  Dr. Walker is interested in the multiple layers of challenges and joys that parenting brings and loves working with both men and women as they negotiate through these processes, highlighting her belief that thriving parents lead to thriving children! Read more at Dr. Walker's Blog and on Facebook.