I recently asked my husband, Jared, who has hemophilia, a this-or-that question: “Would you rather have many insignificant bleeds several times a month, or big bleeds several times a year that keep you bedridden for an entire month?”
Jared chose the former, and I agreed. As a busy mom and entrepreneur, I’m always grateful to have reliable help. Even with his hemophilia and seizure disorder, Jared is reliable, both in business and at home.
When it comes to work, he and I balance each other out. I enjoy coming up with new ideas; he brings these ideas to fruition. I’m flighty and enjoy doing legwork, while he does the administrative work I (sadly) don’t have much patience for. A creative at heart, I’m sometimes careless and messy, whereas Jared is great at cooking and home organization.
One of the mentors in our discipleship group recently remarked that Jared and I rely on each other a lot. Beyond home and business, he relies on me for help in managing day-to-day responsibilities when he’s bogged down by his conditions. On the other hand, he helps me manage my mental health conditions. Because of his disability and his own experience with the depression and trauma that can go hand in hand with having a chronic illness, we are able to see things eye to eye.
Since the beginning of our partnership, I’ve accepted the reality that Jared will sometimes be unable to perform his duties. Hemophilia can be a traitor and strike at the most unexpected moments. Just recently, Jared’s left hand was injured, with no discernible cause.
Hand bleeds are not the most debilitating bleeds. Compared to leg bleeds, ankle bleeds, and back bleeds, they’re mild. Still, they do interfere with Jared’s ability to perform manual tasks – but not so much that he can’t wander beyond his bed for days.
In my mind, I already have a hierarchy of bleed severity. Iliopsoas and hip bleeds occupy the top ranks, while bruises, hand bleeds, and arm bleeds rank somewhere at the bottom. I admit that I often pray for mild bleeds, should Jared bleed at all, as these are easier to treat and don’t interfere too much with our daily routines.
Now that I’ve become a parent, I understand the importance of routines and how they help make life more manageable. Just like toddlers need routine and stability in their lives to feel secure, parents can also benefit from a regular daily routine. More than ever, I appreciate being able to expect the next events in my day, because it helps me prepare myself physically, mentally, and emotionally as I attempt to juggle various household and work tasks.
This also applies to the state of Jared’s health. As unpredictable as hemophilia may be, I appreciate being able to expect how much assistance he can realistically give me — not because I can’t do things alone, but because we mothers really do have a lot on our plates and appreciate whatever help we can get. And what a blessing it is to have help from a partner who fully understands our needs!
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.