The following speech was given by Cheryl Wegener at the PH (Pulmonary Hypertension) International Conference in Orlando, Florida in June 2018. The last time I was at a PH Conference, it was in Orlando at the same hotel, six years ago. It is when I met Cheryl. And I was on a panel of speakers that year as well. She refers to our meeting at the very end. But that's not why I'm posting it. I love her analogy to the Velveteen Rabbit. If you have time, read it. For those of you who also have a sick child, whether PH, cancer, or some other problem, read it.
Love you all!....
"My objective in speaking today was to address not only the needs of the PH child, but also the needs of the entire family, as caring for a child with a life-threatening illness is, at times, both draining and difficult for all parties involved: the parents, the child, and any siblings.
When I was first approached about speaking at conference, my initial reaction was, “Are you kidding me? I’m the poster child for how not to handle this disease.” My friends responded with, “That’s exactly why you do need to speak. You keep things real.”
I keep things real. What does that mean? And in contemplating that question, I was reminded of the children’s book The Velveteen Rabbit, and, more specifically, a conversation that takes place between the stuffed toy rabbit and the wise, old skin-horse. You see, the book follows the life of a stuffed rabbit that is made of inexpensive material and filled with sawdust. He is given as a Christmas gift to a young boy, and as the rabbit sits among the more expensive and flashy toys, the rabbit feels shy and insecure. He wants to fit in with his peers, and he hopes to become special to the boy. The rabbit befriends the skin-horse, who has been in the nursery longer than any of the other toys, and one day the rabbit asks the horse what it means to be “real.”
I’m going to read to you a short excerpt from this scene:
“Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.”
“Does it hurt?” asked the Rabbit.
“Sometimes,” said the Skin Horse, for he was always truthful. “When you are Real you don’t mind being hurt.”
“Does it happen all at once, like being wound up,” he asked, “or bit by bit?”
“It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”
It’s a story about growing up. The rabbit is trying to find himself and his worth. Growing up is hard—you’re trying to figure out yourself and how and where you fit in; you’re trying to figure out what’s real.
So how does this connect to the PH world?
Similar to growing up, processing the multitude of thoughts and feelings that accompany a PH diagnosis does not happen all at once, either. Instead, this is a process that can be very taxing, leaving us physically and emotionally changed and worn. And when I use the word “us,” I am not only referring to caregivers, and I think this is very important to recognize: This disease will affect everyone in your family unit. Recognizing this fact and knowing that people often react in different ways and at different times is one key to tackling the tough emotions.
Emotions of the PHer
My daughter Madison was diagnosed after she inexplicably passed out in her first-grade gym class. We were lucky enough to have the right people at the right time in the initial steps of our journey, but emotionally, as a parent or, I’m sure, as the patient, this didn’t make it any easier.
Very early on, my husband Rob and I made the decision to be open and honest with Madison. We kept it as age-appropriate as possible, but we never told her that something wouldn’t hurt if it would. We were honest, for example, about the blood draws stinging for a bit, but we also made sure that she knew it was temporary, and that at least one of us would be there for her.
As our journey progressed, so did the questions. Explaining that she would need to be on IV therapy, for example, and that she would have a tube permanently extending from her chest.
The “Why me?” question. It’s okay to honestly say, “I don’t know.” Go ahead and acknowledge that it’s not fair, if this is a statement made by your child. It isn’t. It isn’t fair for any of us.
As Madison got older, the questions got harder: “What happens when people get buried? What do you think Heaven is like? What does ‘terminal’ mean?”
Many of these questions don’t have easy answers. As a parent, we inherently want to protect our children but, in this case, you can’t swoop in to save them. You can’t promise them that everything is going to be fine. What you can do is to listen, to ask them what they think, to validate their feelings—even the ugly ones—and reassure him or her that you will be there every step of the way.
The Seven Stages of Grief
In speaking with my own therapist early on in this journey, she told me that we would likely experience the seven stages of grief and at first, I was confused. Isn’t that for after someone has died? And I learned that it isn’t, necessarily. You see, as parents, we are grieving. We are grieving what once was—our vision of a happy, healthy, “normal” family. We are grieving the loss of some of the dreams we had. We are grieving the fact that it is very possible that we will outlive our child.
Many of you have likely experienced some of these stages. Shock and Denial generally come first. For Rob and I, the seriousness of what we were dealing with slowly unfolded over the course of several days. Reality began to set in.
Next is often anger. The reality of the situation becomes apparent, and this hurts. If we’re not ready for this hurt, we may lash out.
Bargaining? “The normal reaction to feelings of helplessness and vulnerability is often a need to regain control” (Axelrod). We might attempt to strike a deal with God or a higher power. Others go through a series of “If only” statements: If only we had seen a doctor sooner. If only we had gotten a second opinion. If only I had been a better person...
“Guilt often accompanies bargaining. We want to believe that there was something we could have done differently to have helped save our loved one” (Axelrod).
Then there is Depression, which can come in many forms—feeling sad, crying often, experiencing changes in your appetite or sleep patterns, or even having unexplained aches and pains.
The Testing Stage is where you try to find realistic solutions for coping with the loss and the rebuilding of your life.
The final stage is Acceptance—you understand what you lost and recognize how important it was to you. You no longer feel angry about it, and you’re finished with bargaining to get it back. However, not everyone is able to fully grasp this stage.
Just as PH is very individualized in its attack, so is grief. Everyone grieves differently. Many people do not experience each stage of grief, and oftentimes the stages that are experienced come in a different order. These stages are not a checklist, per se, but a guide to the grieving process.
The Seven Stages of Grief in Children
Be aware that children, too, will be going through these stages. As they adjust to their own diagnosis or that of a sibling, they, too, will at some point feel sad, depressed, angry, or afraid. Open communication is key, and professional counseling can also be quite beneficial.
Our son was age three-and-a-half when Madison was diagnosed. We had left Michigan and everyone and everything that he’d ever known eleven months prior, and suddenly things were rapidly changing again. Neighbors helped to care for him those first fifteen days that Madison was in the hospital. When she did come home, she was on 24/7 oxygen. Later, there were late-night ER trips and canceled plans and clinic appointments and more hospital stays. He developed anxiety and depression. He became angry. At a young age he did not have the words to process his emotions, so he did so via his actions. This led to him being “asked to leave” several daycare facilities and, later, a Montessori school. He, too, sees a therapist, and she is convinced that for a time, soon after Madison’s diagnosis and the chaos that followed it, Matthew stopped growing emotionally. He experienced a PTSD-like reaction and to this day, at nearly ten years-old, he continues to work on managing his emotions. While we had recognized that Matthew worried about his sister, it wasn’t until this year—when the sister of one of his classmates died—that he was able to verbalize that he worries about Madison dying nearly every day.
Logistically, you can help to combat behavioral issues by treating a sick child as normally as possible, sticking to normal routines, avoiding overindulgence, and setting limits and/or consequences for unacceptable behavior.
Strive to be flexible. You will likely create a “new normal” for yourself and your family. This is okay.
Communicate, both with the members of your family unit and relevant people outside of it. For example, when something unusual is going on with Madison, I make sure that both her teachers and Matthew’s teachers know about it.
If possible, consider reserving some one-on-one time with each child. It is common for siblings of an ill child to feel pushed aside by the medical demands of their brother or sister.
On top of everything else, don’t forget to nourish both your relationship and yourself.
Sound like a lot? It is—some days. Other days, not-so-much. You simply need to “keep it real.”
Another book, The Velveteen Principals (Toni Raiten-D’Antonia), addresses the very concept of “being real.”
Being Real is possible. While a PH diagnosis may change you—it certainly changed each member of my immediate family—it also provides a platform for you to clarify your own identify and self-worth. You really are stronger than you think. Remember that rabbit? In the book, as soon as the rabbit learns what real is and he believes that it is possible, he starts to show signs of being real.
Being Real is a process, and being Real is emotional.
Being real is empathetic, and being Real is courageous. It can also be painful, and it requires one to be flexible. Ultimately, real love endures. The Velveteen Rabbit becomes real due to the boy’s love and affection. You’ve already demonstrated your capability for being real simply by being here today.
At my first conference, ironically enough, at this very same hotel, a veteran PH mom took my hands in hers, looked me in the eyes, and said, “You can do this.” In a way, she was my Skin Horse. Today, I hope that the three of us have offered you information that has you walking out that door knowing that you, too, can do this. You, too, can become real."
