Published: LifeLines for Health, vol. 5 (Summer 2015)

Written by: Russel Friedman

Moms: “Do you remember how you felt in the moment you first became aware that you were pregnant with your child?”

Dads: “Do you remember how you felt in the moment your wife first let you know that she was pregnant with your child?”

We know that every parent, from that moment of awareness of a coming child, begins to create hopes, dreams, and expectations about the future. Every one of the images they conjure up is glorious, uplifting, and happy. “My child will be brilliant, a great artist, a gifted athlete, socially gracious, and will of course be of service to humanity and do greatworks of charity.” It may sound a little overblown, but you know what we mean. Many expectant parents vow that they will do “right” the things their own parents did “wrong.”They will love and cherish their children in better ways, so that their lives will be better.T he pledge we each make is that our children will have a better life than we had, no matter how good [or bad] our life and circumstances have been.

Some people, who had ideal childhoods [we’ve actually met a few], make a commitment to recreate and even improve the kind of loving atmosphere and treatment they recall from their youth.

THE THIRD QUESTION

The two questions that opened this article were asked in a speech we made to a group of parents who were at the first annual convention of an organization that had nothing to do with hemophilia. It was a group whose common linkage was that each member had a child, or children, who were bound up in the tentacles of drug or alcohol addiction.

None of them had imagined they would wind up in that hotel conference room15 or 20 years after their child’s birth. Nor that they would be with nearly one thousand other parents that weekend whose hopes, dreams, and expectations had also been dashed on the rocks of a condition that wreaks havoc on all who are caught in its wake.

Like them, we imagine that you never thought in the moment you learned you were going to have your child, that one day you would be reading an article like this. There was also a third question we needed to ask. It was an awkward one: “How many of you are still married to the co-parent of the child whose condition caused you to be here?” The limited showing of hands indicated a divorce rate much higher than the national average. Dealing with situations that are outside the range of normal puts inordinate pressure on marriages.

Hemophilia, and later, the complication of inhibitors, undoubtedly affect everyone concerned to their emotional cores. Along with that, each family member brings their own beliefs and feelings to the painful task of dealing with the massive loss of shattered hopes and dreams.

Many people carry forward the emotional reactions they had to other grief-related events that affected their lives. Like most of us, rather than beingtaught how to effectively grieve and complete their relationship to what had happened, they learned to bypass those feelings, to bury them out of sight and out of mind.

But the reality is that if you don’t deal with those feelings, eventually they will deal with you, and potentially, with some very negative consequences. Until you deal effectively with the emotions that you may have stored, it can be exponentially difficult to deal with the ongoing emotions that are constantly provoked by living with a condition that requires 24/7 hyper- vigilance. In guiding people who must deal with the daily confrontation of an ongoing condition, we have helped a great number of them not become divorce statistics. We will pass some of that help on to you in this article.

MY GET UP AND GO, GOT UP AND WENT

Our experience with grieving people suggests that there are two things that almost universally impact everyone whose lives have been affected by losses of all kinds. First, is they have a very hard time concentrating, and second, is the ongoing grief drains energy. While this is typical in the early days following a death or divorce, it can be constant when dealing with a continuing situation, as is the case with parenting a child with hemophilia and an inhibitor.

The inability to focus or concentrate looks like this: You walk into a room to do something and then have no idea what you wanted to do when you get there. That’s just one example. We’re sure that you can think of other ways in which you have found it difficult to keep your mind, body, heart, and soul all in the same place at the same time. Having to be on high alert at all times is physically draining and emotionally exhausting. Dealing with an ongoing condition that requires both physical and emotional attention tends to deplete our capacity to bemost effective. We can feel as if we’ve been ground down to nothing.

Because of the potential for emotional exhaustion, we believe it essential that you learn how to deal with any emotions you’ve stored up over time, and how to deal with the ones that crop up daily. One benefit of dealing directly and effectively with your emotions is that you will be able to focus better on all aspects of your daily life and participate fully in all of the relationships that are important to you. And you will be able to stay emotionally present for your child and others who are important in your life.

DON’T FEEL BAD— HERE HAVE A COOKIE, YOU’LL FEEL BETTER

Advising someone who obviously feels bad not to feel that way makes no sense at all. To illustrate, we use the classic story of a child who comes home from pre- school with tears in her eyes. Her mom or dad asks, “What happened?”, and the child responds, “The other little girls were mean to me.” To which the parent says, “Don’t Feel Bad, here have a cookie, you’ll feel better.”

In reality, the cookie doesn’t make the child feel better, it makes her feel different. She has merely been distracted from her hurt feelings. And, she has been told by her parents whom she trusts, not to feel bad—even though that makes no sense at all. She has also been taught that when she feels bad she should medicate herself with a substance, in this case, sugar.

Ten years later, we act surprised when after her first romantic break-up, she starts drinking beer
or smoking marijuana to push away her hurt feelings. Yet, she’s doing exactly what her parents taught her—treating her feelings with substances. Those actions are the result of the well-intended, but misguided, idea of trying to tell someone not to feel bad when they already do.

Another parallel is any attempt to help our mates by trying to shift them from their normal feelings of fear about what might be happening with their child to the intellectual or spiritual ideas that would remove those feelings. Sad, painful, or negative feelings are natural and even serve a purpose. Anything that indicates that we shouldn’t have them is counter-productive and removes some of the safety and trust that partners need to have with each other and with their children.

A better response to the little girl, instead of the offer of cookies, would be, “Ouch, how sad for you to have
your feelings hurt. I can remember that happening when I was young, I didn’t feel good either.” Usually, a parent doesn’t need to say much more than that and the child feels heard and is ready to go out and play. Sometimes the child will want to talk more about what happened and that’s okay, too. But first you must really hear the hurt feelings, and not try to fix them, just acknowledge them.

BE STRONG OR BE HUMAN – PICK ONE

It’s not uncommon, in the face of a medical diagnosis, for each parent to react differently. Each of us has our own style of communicating [or not] the feelings we are feeling. It is at this point, that a gender-based socialization may play a role. There’s a lot of talk about gender and feelings, but we have never been able to correlate happy or sad feelings exclusively to either males or females. One of the major myths we all learn in childhood, is the incorrect idea that when faced with losses, we must BE STRONG and/or, BE STRONG FOR OTHERS.

Men, seeing the emotional impact the diagnosis of their child’s condition has on their spouses, will often try to “Be Strong” for their wives. Even though those men are also emotionally affected, they sometimes perceive it as their job to take care of their wives. In so doing, they often push theirown emotions about their child’s condition aside, in an attempt to come to the aid of their wives. When the man hides his emotions in an attempt to be strong for his wife, his non- display of emotions will appear to his wife as if he doesn’t care and doesn’t love their child. Nothing could be further from the truth. He cares and loves, but he’s trapped inside the idea that in order to “Be Strong” for his wife, he must not show his feelings.

Compounding the issue is that it’s not uncommon for both parents to try to Be Strong for their child, who then receives very mixed messages, as his parents’ verbal and non-verbal communications don’t match. This is very confusing for the child who’s having his own struggle adapting to the reality of his condition.

We think to be open, honest, and emotional is what strong really looks like. We’d like to give you a choice: You can Be Strong or you can Be Human, pick one!

FEELINGS AREN’T BROKEN – THEY DON’T NEED TO BE FIXED

Your spouse is no different than your child when feelings are the presenting issue. He or she needs to be heard and not fixed, and definitely doesn’t need to be given substances to cover up feelings. So if your mate has a long face and you ask what happened, and they say, “I’m really scared, I think Joey’s having a hard time,” you must NOT respond with “Don’t Feel Bad.”

Your response would be better if it sounded something like, “Yes, I can hear that you’re scared, and I’m worried also.” Think about the impact of that give and take: No judgment of the other person’s feelings, no attempt to switch the first partner from heart to head, and the creation of a stronger connection by telling your own emotional truth. All of that reinforces trust and safety between the couple at a point when they are really needed.

LISTEN WITH YOUR HEART, NOT YOUR HEAD

No matter when the diagnosis hits your family, it’s not too late to start using this new and better idea for debriefing each other on a regular basis. After all, hemophilia is going to remaina central part of your life. The constant stimuli that create emotions in each member of your family are not going to stop. You must become better equipped to deal with the frustration of living with and managing the situation, which includes the never-ending reminder of the original hopes, dreams, and expectations you had for you and your child.

The little girl in the pre-school/ cookie scenario could just as well have been a little boy.
Both genders are subject to the “cookies for feelings” trade off negotiated by adult guardians. And though we did mention that gender sometimes plays a part in how we behave in a crisis, there are no hard and fast rules as to which partner might be “strong” and which one might be “emotional.”

Within many couples, both partners try to give unsolicited opinions and advice—even though none were asked for. When your mate or child tells you how he or she feels, what they most need and want is to be heard, not fixed.

Our final word on this is, “Listen with your heart not your head.” Be a heart with ears. Do that for each other and your relationship to each other will expand as will your ability to really hear your affected child, as well as any other children you may have.

LISTENING VS. HEARING: A DISTINCTION WITH A DIFFERENCE

There’s a world of difference between listening and hearing. Unfortunately, because we’ve learned to incorrectly separate happy and sad feelings, and to discourage the expression of the latter, we’ve madea significant portion of our feelings out of bounds. One result of that emotional inequity is that we’ve also learned the bad habit of responding to sad feelings from an intellectual perspective.

On the other hand, we never try to convert other people’s happy feelings into their intellects, only the sad or scary ones. That makes no sense when someone is trying to tell us about a feeling. You must apply some diligence to develop this new habit of really hearing what is being said. The comment, “I’m really scared that Joey’s having a hard time,” is a very clear and honest statement of feeling. It is not a call for an opinion or advice.

At the very least, you must acknowledge hearing your mate. If you have a “me too” to add, by all means do so. But never contest or argue with a feeling.

CREATING A “NO- ADVICE” ZONE

In today’s world it’s often true that both parents work in jobs outside the home. As the divorce rate indicates, this can add emotional pressure to marital relationships. In families with one or more children with hemophilia, it is not uncommon for one of the parents to be the full-time, hands-on care provider for the children, while the other is out there in the work-day jungle. The at-home job, while different from the one outside the home, is equally pressure packed and exhausting

As the returning worker needs to debrief his or her day, so does the stay- at-home worker, who may have been dealing with emotional forces that expand the boundaries of reason and patience. Different jobs can never be compared, so it can never be presumed that one set of pressures is worse than another.

Both sides of the communication spectrum must be present for each partner to benefit. Telling the truth about the events and feelings that affected your day is not possible if your partner doesn’t listen or hear effectively.

The obvious solution is that both partners need the opportunity to safely spill out the good, the bad, and the sometimes ugly, that affected their day. Telling the truth and being heard is the only way to avoid loading up a time bomb that will explode on you when you least expect it.

PRACTICE, PRACTICE, PRACTICE.

Make a pact with yourself not to offer unsolicited opinions or advice. They almost always rob the other person of dignity. Here’s a little trick to help you develop the new habit. If your mate [or child] has told you something, especially about their feelings, and hasn’t asked a question, don’t offer an opinion or give advice.

Practice listening to feelings without offering solutions that weren’t requested.

However, as you listen, you might be bursting to tell them what you think about what they said or how they feel. If so, you can ask this, “I have an opinion about that, would you like to hear it?” If they say “yes,” by gosh, you can tell them what you think. If not, you no longer have an opinion. It’s that simple.

People often tell stories that are wrapped around the feelings they are trying to communicate. The most important parts of those stories are the feelings they contain.

Practice listening to the “heart line” not the storyline.

We know it’s one thing to tell you to do something and another to tell you how to do it. Here are some tips that will help you hear your mate and your children better.

• Listen with your heart, not your head. Allow all emotions to be expressed, without judgment, criticism, or analysis.

• Recognize that feelings are emotional, not intellectual. Feelings do not need to be understood, just expressed and heard.

• Avoid the trap of asking, “What’s wrong?” The automatic response is “Nothing.”

• Go first. Instead of asking someone how they feel, tell the truth about your own feelings. That will create safety for the other person to open up.

• Be patient. Don’t force others to talk about feelings.

• Never say “Don’t feel sad” or “Don’t feel scared.” Sadness

  and fear, the two most common feelings attached to loss of any kind, are essential to being human.

Who knows? Maybe they’ll hear your heart too.

Russell Friedman is Executive Director of The Grief Recovery Institute Educational Foundation, and co-author of The Grief Recovery Handbook, When Children Grieve, Moving On, Moving Beyond Loss, and The Grief Recovery Handbook for Pet Loss . Please visit the website at: www.griefrecoverymethod. com, which features many articles on Grief Recovery.