My husband Jared and I are in the process of finding a nursery for our daughter Cittie. She’s almost 4, but sometimes she acts and talks like she’s much older. Cittie often tells us that she want to go to school. While we refuse to rush them academically, we also respect their desires and interests. Also, preschool would allow her to socialize, play and explore with other children.
In this present chapter of our lives, I can’t help but think about what our future as a family might be. We will likely have typical parenting responsibilities, such as attending school orientations, parent-teacher conferences, sporting events, and concerts. Jared has always been a hands-on dad and I can imagine he doesn’t want to miss a single event!
Still, the real possibility remains that he will have to retire from some activities due to his health condition. Because Jared suffers from severe hemophilia B and seizure disorders, there’s always a chance he could experience a debilitating bleed or an accidental seizure. As with any chronic condition, timing is everything.
Occasionally I can’t help but worry that an ill-timed bleed will leave my child feeling alone during a big event. I would be there for her, of course – but being so close to her father, she might mistake his absence for abandonment, especially if that happened while she is young.
Like many parents, I am sensitive to being seen as an uninvolved or absent parent. Realistically, some parents just can’t attend their kids’ events even if they want to because they are ill. This can happen regularly when the parent is chronically ill.
There are chronically ill parents!
I’ve met many other parents who, like myself, have struggled with mental health issues and physical health issues like Jared. Despite this, not much is said about us and our experiences. Worse, there is also a degree of stigma towards chronically ill parents, as some people are socially conditioned to think that many things, including parenthood, are incapable of disabled people.
The lack of information about chronically ill parents can also contribute to stigma. Internet searches do not bring much information on this topic. And the few studies I’ve read that look at the effects of a parent’s illness on their children aren’t all that reassuring. A research article published in the journal last year Frontiers in Psychiatry, found that a chronic illness in the parents can increase the risk of social-emotional and behavioral problems in children and adolescents. Definitely not the kind of result I want to see in my family!
Interestingly, however, I have experienced the opposite in my personal circles. Most chronically ill parents I know raise emotionally healthy and happy children. And while it’s still a mystery to me, I’m beginning to understand how.
A friend of mine recently shared a touching conversation she had with her child. Her child said they were grateful for her illness “because it meant she worked twice as hard to be a good mom.”
I sense the same phenomenon with Jared. He often says that Cittie is the best thing that has happened to him and it shows in the way he treats her. Even when weakened, he does what he can to accompany, welcome and comfort her.
Now that she’s starting to have her own thoughts, he encourages her to be open about her feelings. He tries not to put himself above her; As a result, he is not dominant or commanding. He often emphasizes that he is only a teacher or guide. He also keeps himself open to criticism. At her current age, Cittie doesn’t criticize much – so he usually starts the conversation by asking if she thinks he did anything wrong.
Jared tells me that growing up with a chronic illness sometimes destroyed his ego because people often thought he was less capable than everyone else. As a result, he often doubts his ability to be a good parent. But I actually think it’s the exact opposite: he’s learned to be a gentle and empathetic parent. And in this day and age, a kid needs that.
Note: Hemophilia News Today is solely a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or other qualified healthcare provider with questions about any medical condition. Never disregard or delay in seeking professional medical advice because you have read something on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and is intended to stimulate discussion on topics related to hemophilia.