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Stories of HOPES: “Like Father Like Son?”

“Like Father Like Son?”

Ben and Trisha’s family have dinner together and discover that support and camaraderie goes deeper than their mutual concerns about HD. Although the gathering ends happily, Ben is agitated by the thought that his son, who is like him in almost every way, will eventually develop HD symptoms. Ben’s all-consuming worry causes him to shower too much attention on Bryan, who begins to guess that something is wrong. Lila encourages Ben to tell her what’s on his mind, and Ben explains his concerns for Bryan’s future and how he feels that he is to blame for Bryan’s assumed condition. Although Ben wants Bryan to get tested with him, Lila consoles her husband and explains that he was given the time to think about getting tested and that they should give their son the same freedom. Despite their mutual worry, Bryan’s parents decide to preserve their son’s childhood and to not treat their son any differently.

The two families had dinner together. Although the reason for their joining was HD, and the topic made itself known with the after-dinner wine, the dinner felt like a celebration. It was difficult to say why – each person around the dinner table had their own laundry list of concerns, their own desires – but as plates of steaming food traveled around it was clear that they all shared something even more visceral than food. It was unity in every sense of the term.

After the world’s finest banana blueberry pancakes, topped with the farmer’s market strawberries, made an appearance and then a quick disappearance as dessert, Todd and Bryan sped off to play. “Adult time” was just as relaxed as dinner, but as “adult things” go, the tone was more serious. Trisha’s husband, Robert, spoke with Lila about her internet researching. In many ways, Robert had filled the same shoes as Lila when it came to planning for their spouse’s doctor visits. They talked about recent news on the HD boards, something about CoQ10, and finally to the genetic testing process. Trisha and Ben spoke like the best of friends. Trisha thought that the air conditioning unit in her house was broken, but didn’t know if it just needed “more of that Freon junk.” In other words, they stayed away from talking about HD – Ben realized that Trisha was more than a source of knowledge, but a source of true camaraderie and support. Ben did say one thing:

“Yeah, I think I’ll be making an appointment soon, Trish. Do you have the doctor’s number?”

“Sure darlin’ – but let’s get some of that wine first!”

The night didn’t feel like a round-table support group. Not that Ben or Trisha would be opposed to a HD group like that, but it felt personal without being disquieting or overtly emotional. They laughed and everyone helped to clear off the table and do the dishes. As dusk drew closer, Trisha asked Todd to get ready to leave, since tomorrow was a “school night.” This was met with playful wailings from Todd and Bryan both; “Just 10 more minutes – pleeeeease!?”

After Trisha’s family went out the side door to their car, Ben and Lila got Bryan ready for bed. Lila made sure that Bryan took his shower and brushed his teeth. Ben made sure that Bryan finished his homework and when it was finally dark outside, went to tuck his son into bed. He hadn’t done this for a couple of years now. At first, Bryan was a bit confused,

“Hey Dad! I’m a big boy now, I can get into bed by myself.”

“I know, son, I know…”

Truth be told, nothing worried him more about the talk at the park with Trisha than the idea that Bryan, his son, may have HD. The dinner went smoothly, the chatting that followed was warm and comfortable, but the elephant in the room for Ben was how to cope with his son’s risk. But like many topics, there are simply some conversations that are near-to-impossible to have after a wonderful dinner, and whether Todd and Bryan would have HD was one of them. Ben wanted to know more about how Trisha and Robert felt about Todd’s risk. He wanted desperately to speak plainly with Lila about his fears…he just couldn’t.

He understood Trisha’s feelings on the matter – to worry about her son’s risk of HD was incredibly real, but too real for childhood. She wouldn’t want to rob her son of his childhood in any way. Ben also thought that Trisha could bear the weight of her own life with HD, but couldn’t deal with the weight of her child’s too. Ben had to agree…sort of. He knew the strength and maturity that Trisha had on the subject was admirable, but Ben’s fear ran so deep, he couldn’t help but draw conclusions – and diagnoses – for himself.

As Ben tucked Bryan into bed, he stroked his son’s light brown hair until Bryan made him stop, “Daaaaaaaad!” He looked into his son’s eyes, the same color blue as his. When he promised to leave Bryan’s room, he stood up and took a long look at the walls. They were covered with posters of baseball stars and Ben remembered his own room as a child, plastered with colorful images of his own sports heroes. As Bryan grew up, Ben was exceedingly proud how much Bryan was “the spitting image” of himself. No one could say that they didn’t look alike – they liked the same sports and were athletic and boys of the outdoors. Ben even had an Australian Shepard as he grew up. This wasn’t the end of it; even nuances of personality were identical between them. During dinner, Ben watched as Bryan pushed all the peas, mashed potatoes, and pot roast away from one another, like he was herding his food into separate corals. Bryan couldn’t stand when food touched each other. As Ben stared down onto his own segregated plate, he smiled. When Bryan ate his food clockwise, always finishing the vegetables first and leaving the meat (his favorite, and Ben’s too) for last, he almost burst out laughing. Not from the strange similarity of father and son, but because of the intense pride he felt Bryan’s instinctual connection to him.

But things were different now – Ben wasn’t entirely healthy. He wasn’t athletic anymore and sometimes forgot to go to Bryan’s baseball games. Deep down, Ben knew that he had HD – and every day that he woke up and looked himself in the mirror, he grew closer to coming to terms with the idea and making the decision to get tested. But when he looked in the young mirror of his son, the pride he had felt about their nearly identical appearances and personality transformed into a sharp fear and sadness. How could Bryan nothave HD? As far as he was concerned, he had already decided that Bryan had the HD allele, and Ben couldn’t help but feel responsible for it. He couldn’t think about anything else.

A week had past since Bryan and Todd played when his family came for dinner. Bryan might be young, but he was a perceptive kid. Adults often make the mistake that their children don’t know what’s going on, or don’t wonder why their parents start acting differently – well, it’s simply not true. But kids don’t often know whether or not they should let on that they “feel something’s up”. Every night that whole week, Ben came in at night to tuck him into bed. At first, it felt like a novelty, so Bryan responded with a joking indigence. After three days, he waited expectantly for his Dad to come in to see if he would. Ben did. After a whole week, Bryan finally spoke up.

“Hey Dad, what’s up? You know I don’t need to be tucked into bed anymore.”

Ben was quiet for a while. He never assumed that Bryan caught on to the increased attention and thought anything of it, but he struggled to find the right response.

“Dad, I think it’s cool that you came to my last game and come to all my practices, I really do. I also like that you help me with homework and take me out for pizza and ice cream whenever I want it, but I don’t really need you to all the time. It’s okay if all that stuff is just a special thing…you know?”

Bryan loved his dad – he was a great role model. They shared much in common and Ben had given him great support in everything; encouraged him at school, taught him the basics of baseball, and on weekends, would do something special. Sometimes they went to the water park or the baseball stadium to watch his favorite team, he even bought him a new bike one day last year, and it wasn’t even his birthday! But this past week, Ben’s attention and affection became smothering…and a bit unusual too.

Two nights ago, Bryan’s dad helped him with his math homework. Well, he didn’t really help, he pretty much did the whole assignment for him.

“Daaaaaad! Why won’t you let me do this problem?”

“Well, son – you’ve been having some trouble with this subject lately, and I just figured you needed a little help.”

“Dad, I know I make mistakes, but if I don’t make them and learn from them, then I’ll do really bad on the test!”

“Well, let me just finish this one, and I’ll check your answer after you’re done.”

Helping with homework was one thing, but doing the assignment for him was another. Bryan’s dad kept telling him that he wanted Bryan to get into the advanced math class – that taking advanced classes would “give him more opportunities later in life.” Bryan was confused by this; he wasn’t even in junior high yet! School was supposed to be fun, and the stressful “homework helping sessions” were not fun at all. The “help” was stressful too because Ben was quick to temper sometimes – insisting that “Bryan, just try again,try again!” Other times, Ben would seem distant, as if helping with homework wasn’t really such a big deal at all.

This strange reversal of attitude was something Bryan had noticed some time ago – and it scared him a little to see his dad acting so differently. It was as if he had two dads now, one that was overbearing and constantly concerned and other times, tired and ambivalent. Bryan wouldn’t say anything when his dad’s moods changed, and tried his best to adapt to each ‘personality,’ but sometimes he wanted to ask him if everything was okay.

Bryan’s dad had come to all his practices and a couple of baseball games. Sometimes, he would encourage him to “give it his all, and maybe,” he said with a wink, “you’ll get a college scholarship.” Other times, when Bryan was almost hit by a ball, or slid hard onto first base, his dad would jump up and scream if he was alright. The love of the game seemed to be gone for Bryan’s dad; he either worried about Bryan’s distant future or nearly had a heart attack every time Bryan was at risk of hurting himself. Regardless, Bryan felt overwhelmed with his dad’s attention, and decided it was time to find out why.

“Dad?”

Bryan’s dad still hunched over him as he rested his head on the pillow. His dad seemed hurt, but mostly conflicted as to what to say to his son.

“Dad, you don’t need to worry about me so much, or get sad about me. Everything’s going to be fine. Can we just try to have fun now?”

“Yes son, but I just worry about you sometimes, I just want to make sure you grow up big and strong with opportunities I didn’t have, like any parent would want for his child.”

Bryan didn’t really know what to say. He let out a sigh, “Okay dad, okay. I love you, good night.”

Ben closed the door quietly to his son’s bedroom door, and stood on the outside holding the doorknob for a few seconds. He wasn’t sure how he was feeling. As he walked to his bedroom, he saw Lila reading a book in her armchair by a lamp. As he walked past, Lila looked up.

“Honey, is everything alright? You seem troubled. Are you worried about your appointment next week?”

“No,” Ben replied quietly, “it’s nothing.”

Lila was quiet for a moment, “You know you can talk to me about anything, I’m in this with you.”

Ben turned to his loving wife, hands in his pockets, and eyes searching the floor.

“Darling, do you worry about…Bryan at all?”

“Well honey, I do want the best for him, but I don’t think that’s what you mean.”

“Well, I want the best for him too, it’s just…”

Lila looked deeply into her husbands face, and waited for him to continue. Ben changed his tone quickly:

“Bryan thinks I’m giving him too much attention, and I just want him to be healthy and have all the opportunities in the world.”

Lila put down her book, ear-marking her spot and motioned for Ben to sit next to her.

“Honey, Bryan’s fine. He’s healthy, doing well in school, and is a fantastic athlete already.”

“I know, but I’m not sure it will last?”

Lila’s eyes showed a spark of understanding, and lowered her tone as if the walls might repeat what she said later if they heard.

“Are you worried if – if Bryan will get HD?”

Ben was dead silent, as if what Lila said was too loud and frightening to respond to. Lila waited for Ben to say anything, but his silence gave her the answer.

“If it makes you feel any better, I worry about that too. But it’s just too much for us to deal with right now, you getting tested next week and everything. I think we should just take this all in one step at a time. And besides, Bryan may not have HD at all.”

Ben’s face looked up quickly, “But darling! Bryan looks exactly like me, he likes all the same things…we even eat food the same way!”

“Shh shh shh,” Lila tried to calm her husband down, “Yes darling, but HD doesn’t work that way. Children do look like their parents, and sons typically look up to their fathers and do the things they see them do. It’s natural.”

“I know that, but I feel like if Bryan got HD, it would be all my fault…I just can’t bear the thought of him dealing with everything I’m going through. I want him to live life to the fullest, to make sure that he succeeds, in spite of HD. But I worry that he won’t have a full life to live to the fullest – does that mean he should go to college? Get married? Even try to advance a career – if it all will start crumbling down?”

Lila saw how much these thoughts tormented her husband. She also saw how contradictory his feelings were. How could Ben shower Bryan with attention and even do his homework for him if he thought that college and a career might not be necessary for Bryan’s future?

Ben sounded like he was on a roll, all his fears and fatalist musings kept pouring out, and Lila listened patiently to him.

“Lila – I know Bryan will have HD – he has to. I think he should get tested with me…so we know how to deal with the future.”

Lila almost felt like crying, seeing how much her husband blamed himself for his HD – she couldn’t bear it. No, her husband wasn’t crumbling…and even if he was, she wouldn’t let him feel that way. She couldn’t. Lila pulled herself together and knew how important it was to support her husband right now, and forever.

“Honey, we can never know what the future holds. We need to allow Bryan his childhood – he’s a good kid. He’s smart and will go far in this world if we guide him. He will have his desires and goals, and I know we wouldn’t want to deny him the experience of living for the future. Yes. Bryan may have a 50% chance of eventually getting HD, but you can’t blame yourself for that, and you can’t know that our son will ever get HD. You can’t blame your mother and I know you don’t. But honey,” Lila’s eyes started glistening over and she grabbed her husband’s hand tightly, “You grew up to be an amazing man, husband, and father. If Bryan grew up to be the same man you are we would have done a great job raising him.”

Ben bit his lip and small tears began to leak from his eyes, “But…I just feel that we need to know…so we can do our jobs as parents better.”

“Honey, I think we’re doing our jobs just fine already. I know it’ll be hard for both of us – just wondering if Bryan will have to go through the same things. But when he gets old enough, he’ll decide for himself when he’s ready to get tested. You had the freedom to find out when you were ready, and Bryan should have the same. Now we just have to do our part. We can’t treat him differently – we can’t make decisions for him based on something we can’t know for sure – we need to give him space, room to breath, to get in trouble, get a scraped knee now and then, and make mistakes!”

Ben knew Lila was right and knew that he’d have to treat his son with the same openness and possibility before he started getting symptoms – before he had ever even heard of HD. Ben still felt the bruising ache of worry, and didn’t know if he’d ever be able to forget about Bryan’s risk – but Lila’s shared worry and commitment to allow Bryan his choice and childhood ignorance was strengthening for him.

As Ben and Lila tucked themselves into bed that night, Ben made a promise to himself that he wouldn’t tuck his son into bed anymore…well maybe every now and again…just as something special.

For further reading on the topics discussed:

  1. Behavioral Symptoms of HD: This link to the HOPES website includes information on the behavioral changes associated with HD. This includes the causes of behavior change, what behavioral changes commonly occur, and potential treatment to manage symptoms.
  2. HD and Family: For greater understanding of family interpersonal dynamics and HD, click here.
  3. Physical Symptoms of HD: This links to the “HD Basic” page on the website. It provides useful knowledge on the physical symptoms associated with HD, primarily chorea.
  4. Cognitive Symptoms of HD: This links to the “Cognitive Symptoms” page of the website, which provides information on what cognitive abilities could be compromised by HD, what causes these symptoms, individual variability with respect to symptoms, and treatment options available.
  5. Family History: This links to information on the inheritance of HD on the HOPES site. This provides the genetic background of inheritance and approaches practical family questions concerning the potential inheritance of HD. It may be insightful to visit the “Genetic Testing” part of the site as well.
  6. Genetic Testing: This link explores a variety of topics on genetic testing, such as: testing guidelines, what takes place during genetic testing, what the test actually does/means, accuracy of the test, confidentiality, and the benefits/consequences of a genetic test for HD.
  7. Enzyme CoQ10: This link will take you to a report on the site on the exciting research and discovery of this potential HD treatment option.

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