Wednesday, October 3, 2012

Jeff Johnson, "a totally 'normal' hemo" shares his heart on how our feelings can affect our children:

Jeff and his wife, Stephanie
"I'd like to approach a subject here that's been present in our community for quite some time and unfortunately isn't always dealt with as openly and honestly as it could be. I'll warn everyone now that this is challenging, both of and for, parents. Not in a negative way but in a healthy, self examining way. Still, one should probably not proceed unless one is prepared for reflection, self examination and even, perhaps, the rejection of deeply held beliefs and feelings.

"The subject I'd like to discuss is the attitude that having hemophilia makes one less than normal and warrants feelings of guilt or regret in a parent or should be viewed as "bad news" and cause for mourning or distress. Now, I'm pragmatic enough to admit that yes, hemophilia is a whole different level of lame and I'm not demeaning my own condition. Bleeds suck, especially when they prevent an activity or life choice from playing out as we would have preferred. And it is expensive, of course, and time consuming. Yes, it has numerous challenges. But at the same time it is important to maintain perspective. There are countless conditions worse than hemophilia and in the grand scheme of things being born a hemo is far better than being born with MS or cancer or sickle cell anemia or so on. While a challenge, hemophilia isn't any longer a death sentence or even condemnation to a life that is less than normal. Our factor today is amazing, as is our care. Compared to previous generations and the trials they experienced, today hemophilia is barely even a disorder, which is why I often joke that "hemophilia is the new asthma!" While it may seem, to a clotter, that we hemos are afflicted with this terrible curse and will never experience the life which others would have wished for us, the reality, despite even the fears of a mother, is that there is absolutely no reason to believe that a hemo's life, especially today, will be any less full or rich or adventurous or rewarding than the life of our fully clotting peers. This isn't romanticizing either. Hemophilia has in many ways become an affliction of the soul and mind just as much, if not more than, of the body, and it's important that we treat it in those regions as diligently and bravely as we do the body.

"Which brings me to the part where I am going to challenge parents. When a parent (or grandparent, uncle, aunt, guardian, etc.) makes a statement that they feel guilty or regret that their child has hemophilia, what they are really saying is that they feel bad because their hemo is less than they could have been. Argue the point if you like, but tracing back from these statements, which I see often, that is the only logical end point. If one feels guilty for the condition of their child, then one sees reason to feel guilty, which means one sees in their child a condition in which that child is diminished or held back from being the something more they would be were that condition not present, which means that they see their child as being less than they could be. As a hemo, I must admit, that when I see someone expressing feelings of guilt because they had a hemo, or a refusal to have children because they're a carrier, or sharing the "bad news" that someone had a hemo, I feel demeaned and somewhat offended, as the greater idea those statements convey is that we hemos are less than we could be, less than our parents hoped for, less than our siblings or peers, less desirable. Less. This is simply not the case. As I discussed earlier, we hemos are equally capable today as any clotter. With modern treatment there is simply no challenge, activity or experience partaken by clotters which it would be impossible for a hemo to participate in. We are active, we are strong and yes, we even play football and hockey now. Yes, that really happens. But to get back to my main point, it is more attitude that restrains us today than hemophilia. We face far more challenges in overcoming the perception that hemophiliacs are fragile creatures at risk of greater harm than our clotting peers than we do of actually being held back by our condition itself, and this perception finds its home in the fears and guilt of parents and guardians.

"I will break here and state that yes, being a parent is incredibly difficult and the fears that a parent faces are sometimes insurmountable. We all know this, whether we are parents ourselves or not. At no point do I intend to convey that parents don't have a tough, demanding job and in no way am I demeaning a parent's emotions, fears or feelings. They are all reasonable and understandable. What I am hoping for, however, is to challenge some parents to engage in genuine self examination and to really confront how their emotions, fears and feelings affect the hemos they are experiencing those feelings for. To delve into themselves and ask themselves questions which many parents eschew, such as "Are these feelings beneficial? Is the way I feel good for my child? Even though I feel this deeply, is it really best for my child or is it creating an attitude that is detrimental to my child?" These are difficult questions, yes, but they are good ones to challenge one's self with. Quite often in my experience in the hemophilia world I have been confronted with parents who don't take this step and instead express their fear/guilt/regret/what-have-you and then stop there and wrap themselves in the mantle of parenthood, stating that "As a parent I am allowed to feel however I want!" Well, yes, we all are. And that's the catch. As a parent one is absolutely entitled to feel however one does, but parents are not released from the consequences of their feelings and the affects which they have on others, just as a pebble cannot be expected to be dropped into a pond without causing ripples to emanate and flow away from it. One's feelings of guilt for having a hemo may feel entirely legitimate to them, but in their child they may cause feelings of inadequacy. While a parent is mourning that their child has hemophilia they may be subconsciously communicating to said child that they are not as special and capable as they could have been born. The ramifications of a parent's attitude, even if not explicitly stated or expressed, are profound. I've seen, too many times, proof of this at summer camp. I've attended hemophilia camps since the mid eighties as a kid myself, and have worked as staff since the nineties. Every year, without fail, I observe at least one hemo who comes into camp meek and apprehensive. They're unsure of their potential and afraid to fully engage. As the week progresses and we work with them to instill courage and empowerment, they come alive, and by the end of camp they are running, jumping, climbing rock walls and living with the gleeful abandon that they deserve. It's glorious. But then, on the last day, they retreat back into themselves, especially when their parents show up. Now that Mom is around again it's time to go back to being a hemo, a defective kid who isn't "normal." It breaks my heart every time because it doesn't have to be. Many parents don't even realize that they are doing this, which is sad as well. They think they've contained their guilt, their fears and their regret and that their child is completely unaware, but that's merely an illusion. Their child is very much aware of how Mom and Dad feel and so, out of his love for them, he plays along. "Mom feels guilty that I have hemophilia so I'll be good and not do anything 'dangerous.'" "I don't want to make them feel worse so I won't try out for soccer." And so on and so forth. They don't live up to their potential and their parents never see what their child is really capable of. Hemophilia hasn't held them back; the attitude and perception that it is less than normal and cause for guilt has. I see it all the time.

"So again, I challenge parents to really look deeply into themselves and examine their emotions and feelings. Ask yourselves if how you feel is really, legitimately warranted and if it is the best way to feel for your child. Examine why you feel a certain way and whether or not it is based on fear or reality. Reject the comforting but unhelpful sanctuary of "I'm a parent and can feel however I like" and instead proceed with the attitude of "Even how I feel inside affects him so what is the best way to look at life? And him?" Of course these kinds of exercises are difficult, but so is learning to self infuse, which your little hemo will have to do regardless. Consider this "prophy for the soul." I promise you, it's for the best, for everyone. Hemos who grow up in homes where the attitude is "You just have hemophilia, not 'made out of tissue paper syndrome' so get outside and play" flourish.

"In closing I'll pose the question, "What is normal anyway?" Not having hemophilia is normal? I call shenanigans. From my perspective, it's clotters who are abnormal. They freak out at the thought of getting stuck with a needle, a bruise gives them panic attacks, they think a limp is a sign that it's time to see a doctor, they usually can't wrap an ankle to save their lives. Poor clotters... So far from normal... See what I'm getting at? There is no normal, so there is no model of normalcy to hold a child up against. We all have conditions. We are all imperfect, and in this lies our perfection. So from a totally "normal" hemo who hopes to one day live free of the perception that I am less, please challenge yourselves to no longer see us as less. See us as more. See us as normal.

Or I'll stick you."


  1. LOVE THIS!!! Love Even more that it is going out in our hemo world!!

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  3. Chastity, I've shed my share of tears as well, not because I felt guilty to have a hemo, but guilty that they have to suffer because of it sometimes. Jeff's insight means so much to me as a mom. It makes me feel like I don't need to feel guilty. It's just part of their normal life. I can just be happy to have them, and roll with the punches just like my non-hemo children.

  4. Hi Sarah, I'm really giving Jeff's post a real "prophy for the soul"...I like that...thought and I somewhat agree, but mostly disagree.

    I think it is okay to acknowledge your feelings of "guilt" or "regret" for having a child with hemophilia. How could I not feel guilty about having a child with hemophilia when I see them in pain and there is nothing I can do but hold them down to get a needle which causes them more pain (prior to becoming a prophyholic). Yes, as they get older it is our job to treat them as "normal" as possible so they don't feel like a handicap. At the same time, I have to be son is not going to be the All Star Pro athlete going to college on a football scholarship. Yes, I could keep him factored up so he could go play, but why take that chance. Children with out a bleeding disorder are getting major head injuries from playing football. Not only that, what will his quality of life be if he starts getting target joint bleeds.

    So I agree with you, parents should get out of "mourning" the fact their child has hemophilia. You have to move into dealing with it. You deal with it by educating yourself and your child. Yes, there are worse conditions than hemophilia and at times I feel blessed to only have hemophilia to deal with. Just because the care for hemophilia has come along way, the ramifications of what it does to the body has not. You are lucky like me, we have access to factor and doctors so we can give our son a "normal" life. However, there are many children and families dealing with hemophilia that suffer because they can not afford to treat a bleed everytime or go to the doctors....mmm I can't imagine that kind of guilt.

    So yes, my feelings about hemophilia does affect my sons. Yes, I know my older son is more of a nut when I am not around. However, I know that all I can do is educate him, take precautions like wearing a helment and factor him up. At the end of the day, I hope I've done such a good job as a parent that he tells his future daughter holding his hemophiliac grandson, "My Mom was the best Hemo Mom and this is what you need to do....." (I pray it doesn't come to that and we have advanced with gene therapy to cure hemophilia!)

    1. I love your thoughts on this. Thank you so much for taking the time to share them here. What I take away from Jeff's post is that this is the perspective of a guy with hemophilia who has grown to adulthood with it, and has worked at camp with younger hemos. I realize that he's not speaking as a parent. He's speaking as a hemo to parents. It is just another perspective that helps me as a mom. Yes, of course, I agree with you on educating our children, and being realistic. I like being reminded to keep things positive. We make this a daily goal in our family. Prophy days are for 2 boys now. When I'm setting up, everyone (hemo or not) can get a prophy treat from the prophy treat jar. Then, during treatment, they can watch their show of choice. Since we've had Silas (child #5, but hemo #2), Eli (child #3, hemo #1) has been so much better about prophy. I am so proud. His prophy isn't just about him anymore. He sticks out his chest, and doesn't complain a bit because he's being a good example for Silas. Sounds like you are a great mom. I'm glad you posted. I saw that you have a blog too, and I am excited to follow and read your posts! Thanks again, Sarah

  5. Hello all. First, I want to thank Sarah for reposting my words here. I greatly appreciate that she felt that they were worth repeating, just as I appreciate the warm response they have received, all over the internet.

    I would like to address a couple of things in the previous post. Again, this is coming from a guy who has had this condition for a handful of decades and has worked in the community with hundreds of other hemos, both older and younger, so I base this on my experience with my own condition and theirs.

    "my son is not going to be the All Star Pro athlete going to college on a football scholarship."

    If he has the talent, then there really isn't any reason for him not to be. Yes, he is at risk of injury, but every athlete is and hemophilia doesn't increase those odds. It merely makes the process of dealing with an injury more involved. In 2012 there really isn't any longer any reason to say "So and so can't do such and such activity because they have hemophilia." In those cases, it is fear acting as the barrier to a life choice, not hemophilia. Yes, football will probably cause a bleed or two. Big deal. We bleed, allergy suffers sneeze. C'est la vie. Now, some parents don't want their kids in football at all, clotter or hemo, and I get that. I do. But prohibiting it just because of hemophilia just isn't rational today and the choice should be made together with the potential athlete after fully discussing the sport, possible injuries and how he'd have to handle his hemophilia. I still bristle when I think about how I was prevented from making my own life choice (and this way back before superfactor and cryo cuffs and all) and hate the idea that other hemos will be too.

    "Yes, I could keep him factored up so he could go play, but why take that chance."

    Why not? If he is passionate about it, then why hold him back from deciding the course of his own life? If he just sucks at football then that's another matter, of course. Every football player takes a chance, not just hemos. And yes, some of us have gotten onto the field and been just fine, believe it or not.

    "Children with out a bleeding disorder are getting major head injuries from playing football."

    Yes, and they aren't killing the sport, are they? Everyone risks injury, every day. You risk head injury, to yourself and him, every time you get in a car. It is folly to believe that one can avert risk in life, and tragedy when one limits life to try and do so. Perhaps he plays football and does get hurt. Perhaps he doesn't. Ultimately he's facing the same odds as every other person out there.

    "Not only that, what will his quality of life be if he starts getting target joint bleeds."

    First, he's going to have some bad joints eventually. One of the reasons I am so against the concept of prophy is the aura which HTCs create with it which leaves parents with this misinformed idea that prophy is so awesome that their kid won't bleed or ever have joint problems. We're hemos, we bleed, we get bad joints. It's just what we do, and prophy won't stop these things. Second, so what if he gets a "target joint?" Having a bad joint or two doesn't suddenly make us invalids. My knees are total crap and my back hurts every day, but truly, my quality of life is fine. This belief in our community, which has arisen in the last ten years or so, that prophy is a panacea which means no more "target joints" or "breakthrough bleeds" and that they are cause for alarm if they do happen (which they will) is doing no-one any good. I sincerely advise everyone to let go of hopes that prophy (and avoiding activities) is going to save anyone from hemophilia, or that we need saving anyhow. Until there's a cure, we still have a bleeding disorder, which is fine and normal and there's nothing wrong with that. We just need to be realistic about it, what it does to us and how it limits us (or doesn't).

    1. Jeff, thanks for taking the time to respond to the comments above. I have a question for you with a personal application. Eli wants to go into karate. He could start in a few months because he will be the minimum age of 5. We haven't been sure about letting him because of its being a contact sport. As a mom, I let my children take reasonable risks, but not anything that puts them in real danger. I know that all children take a risk when they go into karate, but they do not have the high risk that Eli would have. A head bleed for a non-hemo is much different than for a hemo even with prophy and extra treatments post-injury. I don't want to hold him back, but at the same time I feel a responsibility to protect him from things that could really hurt him. He's 4. He can't carry the responsibility of making these choices, and I don't want to get him started in something that he shouldn't continue when he gets more advanced. What do you think?

    2. Hi Jeff and Sarah, Thanks for responding. I guess everyone experience with Hemophilia is different. I didn't mention in the post that my son's first major bleed was a head bleed when he fell of the bed as an infant and then had a spontaneous one in the head after that. He hasn't had another in at least 8 I'm going to be a little more cautious regarding anything that will affect his head. Which sucks because he actually is good at football.

      Also, I have not been around another hemophilia family besides my sons, so I can only tell you from my experience prophy has been a blessing. My oldest son has not had a joint bleed or spontaneous bleed in 8 years and my 2 year old son has not had a bleed since his port was put in last spring. (pounding on wood right now) They are very rough and I don't keep them "bubble wrapped" so I can only think it is thier factor that helps. Both also are severe hemophilia A. Based on what I understand, the earlier prophy is started in life the better chances you have to reduce joint pain in the future.

      Also, as a daughter of hemo, I watched my father lie on the couch in pain for 15 years because his knees were so bad. I can still remember him making me feel how hot and swollen they were. So, I'm truly glad that your quality of life is fine, but unfortantely his was least until he had both knees replaced but he still had major elbow and shoulder bleeds.

      Jeff, I do have one question? You say let him play sports and if he gets a bleed then deal with it yet at the end you wrote that "prophy is not going to save anyone from hemophilia". Do you not believe that prophy is the reason hemophiliacs can be more active then ever before?

      Also, Sarah please talk to your Hemo Doctor about the karate because they may recommend you schedule his prophy treatment on karate days to also reduce injury since his levels will be up. This is what my hemo doctor advised if we start basketball.

      Good chatting...this is why I started my blog.

    3. I am loving hearing from the two of you, Jeff and Lovee. You've each had a lifetime with hemophilia, and I have only had 4 years. I really look up to you both.

      That must've been so scary, Lovee. We haven't had a head bleed yet, hopefully never will.

      Yes, I was wondering the same thing, Jeff. You say that factor today is what is so freeing for hemos, yet you don't believe in prophy??

      Lovee, I will definitely be talking to our hemo dr about all of this. We have clinic this month. :o)

  6. Actually, karate would be excellent for him. Hemo Docs were recommending martial arts even back when I was young as they are a great way of maintaining the body in a fit, flexible and healthy state. A lot of folks, hemo and parent alike, forget that physical conditioning can be as beneficial in preventing hemo problems as treating regularly, if not more so. The more muscle is built up to protect our joints, the better, and staying limber and flexible is fantastic at staving off muscle issues. Beyond that, martial arts instills self discipline probably better than any other activity, which is also a great weapon for hemos to arm ourselves with. I greatly regret not doing a martial art in my younger days as I know I'd be better off now if I had. At the Arizona camp this year I had the pleasure of meeting another hemo who is actually a master in Kung Fu, Karate and several other arts, runs his own dojo and was at camp to give Kung Fu lessons to the campers. He's older than I am and is in fantastic shape because of his craft. Inspired me to look into dragging my old bones to a class or two. So yes, definitely do it if he's into it. Sit down, explain the risks and make sure he's aware (as much as a five year old can be, of course) that as a hemo he may sometimes have a more difficult time or have to treat a little more diligently, but encourage him to try. It's a great choice for him.

    1. Aw, this is so encouraging. I will share this info with Matt. I'll let you know what we decide! If we go ahead with it, it will be a big deal, for sure. :o)

  7. Loved the conversation in the comments!
    I am so glad Jeff came and went in to more detail in the comments!!
    Landon is only a year old, so we are still relatively new to all of this, but I do remember how my grandfather was treated bu his mother, even when he was in his 50's...and I know I do not want Landon to grow up feeling like he is less of a person or he is not capable of all the things his brothers are capable of!

    Our HTC is all about presenting them with the sports he would like to play and then discussing a course of action, we still have a ways to before then, but it is encouraging to know that they want him to succeed and enjoy life as much as his brothers...

    I have been reading Ryan White's story and love the way his mother raised him, she did not raise him fearfully, she took each day in stride...and basically said live your life and we will take each bleed as it comes...
    I cannot live my life in fear or worrying about the "what if's", I have to trust God, He knew the ending to our story before I even knew the beginning
    Thank you for sharing your story Jeff and sorry for the thoughts get lost when I'm commenting on my phone!

  8. Reading the dialogue present, I can’t help but be impressed. Jeff you go right to the heart of what every person in the community has to face. How do you balance keeping your child safe while not causing harm yourself? There is truly no right answer, but I do agree that living in fear is no way to be. Bubble wrapping is physiologically harmful. I myself have hemophilia and have experienced both sides of the coin. I have done things because I was told that I couldn’t. Alternatively, I have also not done things because I was told that I couldn’t. Yes, every child, every person is different. Everyone bleeds differently. At the end of the day, you have to make choices for what feels right for yourself and what feels right for your family. It is my stance that going into important decisions such as those requires an open mind and a willingness to explore your options. Sarah, I think that you are on the right track by finding out what you can and by having these discussions.

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