Clips and Snippets from Parenting Children with Health Issues
“Packed With Essential Learning, Real People and Real Help”
Ordinary parents with their “run-of-the-mill” kids can occasionally be taken aback by spur of the moment questions that are difficult to answer. Such questions might be, "How often do you and dad have sex?" Or "Did you do drugs when you were a kid?" Those with chronically ill children have even more difficult questions. Their kids might ask, "When am I going to die?" Or, "Am I really going to go to Heaven?" Or, “Will my disease kill me?”
“Isn't that something! Here is a little girl, on death's doorstep because of refusing to take her medication and a week later she is proudly taking responsibility for herself and making a conscious decision to live.”
“Is it difficult to put on a wet shirt on a cold morning? Well, try doing it with one arm!”
Self-concept is raised every time parents look at their children and say, “Gee thanks” for something the kid has done.
A search for life’s answers can be seen as a search for control and predictability.
“Perhaps luckily for you, Trevor, you have illnesses which only require self control and awareness on your part. You don’t have cancer, a wasting neurological disease in which you end up paralyzed and unable to breathe, or a brain hemorrhage. Your illnesses are perfectly designed for building character, should you choose to go that route.”
And the wise mom said, “I’m kind of put out right now. I’ll get back to you later. Try not to worry about it. We’ll be in touch.”
Anger is almost always laced with frustration around the question: "How can I make this kid take good care of him/her self?”
To say that Ricky was upset that night is like saying that Mt. Vesuvius burped the day it buried Pompeii.
Love and Logic says, “Be sad for; not mad at.”
Children love to hear a frustrated parent say, “Am I going to have to supervise every one of your treatments?!!”
When an accepting person shows love to an individual, when that individual knows that the other does not approve of the behavior, it brings the two closer together. It is a bonding experience. This is the power of Grace!
“Advice” is something that should be followed. “Thoughts” are offered for another’s consideration. Wording and attitude make a world of difference.
Angry and resentful feelings drive most of the world’s self-destructive behavior. That’s a universal truth that applies to both terrorists and our children.
We have never run into even one teenager who complained during therapy, "My parents just don't control me tightly enough. I really wish they’d say ‘no’ to me more often."
“Are you guys going to stop bickering or would you rather pay me to listen to it?”
If we knew we would always get one warning each year for speeding before we could receive a ticket, wouldn’t we drive like lightning until that warning was received?
The child whined, "Why? What did I do?" And her mom replied, "I'm not really sure, honey, but I notice that I'm feeling an energy drain."
His mom helped him figure out which Christmas toys he could forego to help pay for the ambulance. It turned out that those expensive few miles provided an excellent learning experience!
“It is hard to express how freeing it was to feel blameless in the face of his turmoil.”
When mothers or fathers show anger towards a two, three or four-year-old children, they don’t think, “There s/he goes again!” They simply feel bad, cry, run off to their room or are scared.
A father and son laugh together over a poster picture of lungs, as the six year old draws bugs (red dots) down in the bottom of the lung. Those bugs experience a sudden and agonizing death when medication (blue crayon puffs) snuffs them out.
In pre-teen years, “merge with the herd” is primary. In the high school years, kids strive to stand out in the group.
“After the soccer game, I had this little scratch and about four drops of blood. Four drops! The way mom was screaming around, you would have thought I needed clotting factor!"
Do we as parents wish with all our hearts that our children were responsible and self sufficient and do we do all we can to encourage that……or are we bound up in needing to be needed?
Vibrating acceptance is more than simply saying, “Honey, you can talk to me about anything.” It is putting that statement into action by not over-reacting; asking thoughtful questions about the child’s perception; giving acceptance but not necessarily approval, and providing eye contact and body posture that says, one way or another, “That’s an interesting subject. First, give me your thoughts and I’ll give you mine.”
“Fortune cookies can be pretty boring so to liven things up, I "read” mine as follows: "You are a mean and nasty man. You have no friends and you will die lonely." Six-year-old Jake said nothing, but popped up from the table, threw my paper cookie statement in the kitchen trash, and silently returned. Later, when I was alone, Jacob confided, “Sometimes those fortune cookies can be quite hurtful. It's best not to think about them and just throw them away.” Then, after a thoughtful moment, he added, “I never got one quite that bad.”
"As I look back on it, I realize I could have been so much more help to Bobby. However, at the time, my own son, Jess, was seven, and also a brunette, brown-eyed boy. I think that may have played a role in my denial. Bobby's death devastated me but I learned from it. Now, when a child asks if they are going to die, instead of saying, ‘Of course not’ and closing down the conversation, I give hope but I explore their fears.”
“The fact was, it didn't have to be changed exactly on schedule.” Janet later admitted, "I feel so bad as I look back on it…. Finally, one day, in exasperation, I asked Ginny why it was so important to wait half an hour. She said, ‘Seventh Heaven, my favorite TV show, starts a half an hour after my dressing is changed. If you could wait till then so I could watch it while you change my dressing, I think it would take my mind off being hurt so much.’”
The parent lights a candle and shows it to the child, saying, "Josh, this candle is like your body and made of carbon atoms, but instead of flesh and blood, the candle’s carbon atoms are wax. And, like your own physical body, the candle itself is not all that important, but the flame is. Holding that flame is what the candle is all about. For you, the flame is like the spark in your eyes, the sparkle in your smile, your thoughts and your personality.
It’s paradoxical that our rational side can come up with guilt producing irrational responses in it’s search for reasons because if bad things have reasons, life becomes more predictable and controllable, so we tend to look for reasons like something we could have done differently. It might be a little crazy, but it gives us a feeling of power and control.
“Well he’s not facing facts.”
“So how do we give him a wake up call about his condition?”
“Why should we say anything?”
“Well deep down inside he may be hurting.”
”Maybe you are the one who is hurting. We gave him openings to express inner doubts, and he didn’t take us up on it. He is taking good care of himself. So be careful you are not advocating something to meet your needs, not his.”
Jacob, a very responsible 7-year-old with CF, has recurrent nasal infections. He faithfully washes his nasal passages daily and uses the prescribed nasal spray, but upon developing nasal polyps (again!), breaks his mom’s heart by inquiring with quivering voice, “Mom, is this happening because I haven’t taken good enough care of my nose?”
Somehow, Bonnie’s parents have never been able to disentangle themselves from making Bonnie the center of their energy and attention. Now they are between a rock and a hard spot, having created a demanding hostile-dependent child who they fear could become a street person if they do not accede to her continuing demands on their resources and energy. Bonnie accepts their gifts, which have considerably drained the family estate, resentfully (“it’s not enough”) and with nary a “thank you.”
Chronically ill children can easily drift into feelings of being “unfair-ed upon” by life, resulting in an entitled and demanding personality if their demands are met by parents who, because of guilt, denial, or “feeling sorry for” placate the demands. When infants, because of pain or illness or the discomfort of treatment cry, they need an over-abundance of comfort and holding. Although this may result in a demanding toddler, that is an easier problem to rectify than a child who is difficult to handle because of lack of response to chronic pain in infancy.
Some parents don’t parent “just” children. Instead, they live with personal growth systems that are presented to them in different versions and models. Some of the growth systems are called Down Kids; some are called Kids with Klienfelter’s Syndrome; some are known as Kids with Asperger Syndrome; some are autistic.
For Rob, that meant time to take his meds was not 12:02 and not 10 minutes early. It had to be 12 o'clock or nothing. That’s when the hands of his watch were together, and that’s that!
Dealing with a child’s life-threatening denial takes finesse. Reacting with anger, frustration, blame (whether on the child or society) or hand-wringing is never as effective as responding with sorrow, curiosity and interest in a child’s poor choices and difficult situations.
Optimistic and positive parents, at the very least, are comforted in knowing that worry, sorrow and fear showing in their children’s eyes, originate from within the children themselves and are not simply a reflection of parental responses.
“Honey, I am so glad you agreed to have this conversation with me. I've been troubled by something about myself for a long time. I just never felt I could do anything about it. I find that many people, when they see me in the store, look away. Sometimes people ignore me. I know that's because I am just plain fat. I never said that about myself, but it’s true! I've never done anything about it because I thought it would be too hard. But now, I think I can do something about it.”
Triangulation is a purposeful transfer of misinformation or unnecessary information in order to promote discord. It might be seen as a form of manipulative gossip.
“I carry us along in a wave of adventure, ideas, and new experiences while he provides the stability and practicality that makes sure we don’t get swept away by a tidal wave! Together, we make a great team. One without the other would either be too impulsive or too staid. And yet, in the blurred vision of these many differences, we have at times lost sight of each other. The differences through the years have become less a cause for celebration and cooperation more of a reason for dissent and dissatisfaction.