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Joe Caronna
President and Founder, Inalex Communications
Joe Caronna’s premise for Inalex Communications began with some probing questions to himself: Where are we, as fathers, in this modern world? And, how do I manage this new role as the father of a child with hemophilia?
Today, he’s still answering questions, but now most are from other dads and family members he meets through his non-profit company, Inalex Communications: “Why do I have to infuse my child? Isn’t that a mother’s job?” “Should I watch football with my son, knowing the sport is risky for him?” “Why does my husband act so resentful towards me all the time?” “Why does Dad seem so angry?”
We’re pleased to have Joe available here to answer your questions about how dads cope with living with hemophilia. He has first-hand perspective on what it’s like to have feelings of sadness, hurt and anger related to a child’s hemophilia.
Inalex Communications is a national organization that develops and provides education and support programs to all family members coping with a bleeding disorder. As its president and founder, Joe is also the past president of the Hemophilia Association of New Jersey and has served on numerous hemophilia-related state and national consumer committees. He has been an advocate in the hemophilia community since his son was diagnosed in 1994. Joe is also an experienced organizational leader with over 25 years experience in information technology and team building. His one passion is to empower all people living with bleeding disorders, through a series of unique and innovative programs, including workshops, teleconferences, and a new video series - all designed to provide Hope, Information, and Inspiration.
Question from Scott's Dad:
Hi Joe, I attended a few of your sessions. They were very helpful. I have a 6 year old son with severe Factor 8. My wife is so nervous about his hemophilia that she doesn’t allow him to do any sports related activities. I think she baby’s him, and she thinks I’m too rough. It’s causing quite a bit of stress on my relationship with my wife. How can we resolve this?
Joe's Response:
John Gottman, the famous marriage researcher, writes that 63% of all disputes between couples can never be completely resolved. This is one of them. Many couples have one parent, most often the Dad, who speaks for the need to prepare the child for the real world, while the other parent, usually Mom, tries to protect the child from harm. It's important to recognize that both these jobs are necessary to be a good parent. A child does need both protection and encouragement to explore. What you might try is to discuss each situation as it comes up rather than trying to figure out one formula to deal with the tension between these two goals. As you talk, try to focus on facts. For instance, swimming is considered a pretty safe sport for children with bleeding disorders to participate in. Tackle football is not. I'd definitely recommend getting as much information as possible from other members of the bleeding disorders community since this is an issue all parents face. Your treatment center is a great place to start. Also, the protective parent must guard against being over-protective and then discovering that the child is doing physical things without talking with you because, "All you ever say is no." Meanwhile, the other parent must think seriously about the risk of being under-protective. The bottom line here is that you need to listen to each other's wisdom and try to reach reasonable decisions in each situation as it arises.
Question from Frank:
We have 2 children. Very often the treatment of our older child takes a great deal of my wife and my attention and focus. We wonder if our second child knows that we love both of them equally but sometimes one requires more attention than the other. Do you have any suggestions?
Joe's Response:
I've talked with many adults in my workshops and teleconferences who, when they were children, had a sibling who required a lot of extra care because of a physical or emotional problem. They all recognize that the parents had to take that extra time with the sibling. Still, many of them do feel they were neglected at least a little. I don't think you can avoid this scenario completely. But what you can do is to set aside some one-to-one time with the non-affected child on a regular basis. It may not be a lot of time, but I think it should be regularly scheduled (with the understanding that emergencies might happen). If that time gets missed because of the need to care for the more needy child, that loss should be acknowledged and a specific new time set to make up for it. That sends the message that you're thinking of both children all the time. Another thing to remember is that all children want to be seen and recognized. So tell the non-affected siblings the good things you see in them while noting their achievements and successes. And, thirdly, it might help from time to time to ask those children what they do want and need from you to help them feel special.
Question from Jim:
When the person that you love is diagnosed with Hemophilia, but is not a direct family member, how do you properly approach the family with your concerns for their child without feeling like you’re intruding?
Joe's Response:
If this is a situation in which you are not well versed in hemophilia, you could ask the parents to help you understand what hemophilia is. Local and national hemophilia chapters and associations, and hemophilia treatment centers, are wonderful resources for this information. Learning about hemophilia would be a way to show interest but also keep your involvement initially at an intellectual level until they show you if they want to get more involved. On the other hand, if you are familiar with hemophilia already, you could ask if they would like your help gathering information or gaining access to resources. In either case the idea is to begin with a non-intrusive approach and then let the conversation evolve naturally toward greater depth. One thing to avoid, of course, is becoming extremely emotional yourself. You don't want parents dealing with a new diagnosis to have to take care of you. And, since hemophilia is a life-long disorder, you will always have opportunities to let them know that you will be glad to talk with them any time they want or need to speak with someone about what's going on with their child and in their life.
Question from Sandy:
How can I get my husband more involved in the treatment of my son's hemophilia? He says that he cannot bear to infuse our son, but my son wants his dad involved. What can do?
Joe's Response:
Getting one's spouse involved is a broad concept, so I suggest that you first focus on exactly what “getting more involved” means to you and your family. Renowned psychotherapist, author, and Inalex facility member, Dr. Ronald Potter-Efron, has a wonderful technique to crystallize your thoughts on this, he suggests that you draw a circle at the center of a sheet of paper and put the word "involved" in the circle. Then think of all the possible things that involvement could entail and put each of them in smaller circles outside the main one. For example, that word could include infusion, or meeting with your hemophilia treatment center, attending education seminars, or watching the Inalex education DVD’s to learn more about the disorder, or just talking with your son about his disorder. Involvement could also apply to doing things with your child such as playing sports, if your husband has been avoiding them in fear of hurting your son. Perhaps he's been avoiding him a lot because of a fear of serious injury-- then any shared activities would be part of involvement. The idea of this exercise is to first identify what involvement means to you and your family and then, once identified, pull your spouse in gradually so that he wants to be involved with your son. Eventually he may want to help with infusions, but even if not, he will now be aware of the other opportunities available for him to become involved in his son’s treatment.
Question from Tony:
joe i just wanted to say that u should not have to cope w/ anything a kid w/ hemophilia is not a burden it is simple to live w/ and can be dealt w/ simply i feel that we as a community need to stress that more to the parents ur kids are normal and can do anything any other child can do they just have to take smaller steps and protect themselves more for ex. sports- play them just use extra padding I’m sick of seeing kids w/ hemophilia stuck in a bubble this needs to stop. it will be scary to see ur child on the field of whatever stadium he decides to play in but here’s a new saying for you and bayer embrace the fear
Joe's Response:
I certainly agree that "You are normal" is the best approach to take with a child living with hemophilia these days, since proper medications make living a normal life a reasonable expectation for most children with bleeding disorders, although there are some exceptions. For parents, I think we could offer a more subtle message: "Treat your child as normally as possible while taking into account his or her unique needs." We still have to make room for the inevitable emotional pain; worry, sadness and guilt can occur when one's child has a serious medical problem, and bleeding disorders remain in that category despite medical advances. Your suggested phrase: "Embrace the fear" could be quite valuable for parents who have become somewhat paralyzed with fear for their child. It would help them accept fear as part of parenting a child with a bleeding disorder. Of course that message is really part of a larger one: "Embrace your child!!"
Question from Jim:
Hi Joe, My son is 14 years old and he is angry about everything - school, his sister, me and my husband, his hemophilia... Sometimes his anger scares me. My husband says that this is just a phase that boys go through and I shouldn't worry. Should I worry? If so, is there anything I should be doing? If not, when will it end?
Joe's Response:
It's true that many, but not all, boys go through periods of anger, grouchiness, and irritability as they reach adolescence. It usually comes out in comments such as the "Don't tell me what to do and you can't make me" form but can spread into a "Just leave me totally alone so I can do whatever I want" format. This attitude and behavior is part of the boy's need to separate from his family, and, yes, it is usually temporary, although temporary can mean it lasts several months or even a couple years. Eventually these children usually recognize that their families and their families' way of life isn’t all that bad. That doesn't mean that parents should just completely accept this anger, though. The goal is to allow the teen space to be annoyed and annoying but not to let his anger take over the home. For instance, you might have to tell your son that he can mutter all he wants but he still has to; for example, get his factor because of a recent injury. You might also have to set limits as to what he can say to you and his siblings (e.g. "You can argue with us but you may not use a curse word or the conversation is over"). Physical aggression must be prohibited as well. The other thing you can do is to listen very carefully to what he is upset about and actually offer to problem solve the situations with him. That sometimes ends verbal attacks because he feels listened to and therefore respected, and that may be more the real issue than the content of the dispute.
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