A father’s words of wisdom for parents of a child with hemophilia
Growing up with hemophilia has shaped this dad's approach to parenting
Becoming a parent changes everything in life. This was certainly true for my husband, Jared, who’d always dreamed of being a father, despite having severe hemophilia B and frequent seizures. When our daughter, Cittie, was born, that dream came to life, giving him more purpose and even improving his health.
Reflecting on his journey, Jared often wonders what it would be like to raise a child with hemophilia. He certainly understands the challenges it entails.
In this column, Jared shares below some of his thoughts for parents of children with hemophilia. His advice is rooted in practical wisdom, aimed at helping them prepare for the realities ahead while keeping their expectations grounded.
Accept the journey, but plan ahead with flexibility
Parenthood is full of surprises. When you plan to have a child, you must accept the possibility of any situation, including that your child might have a health condition. This doesn’t mean you need to have everything figured out ahead of time, but you should at least have a plan in place that you can adapt when necessary.
You also don’t have to be perfect or have all the answers right away. Parenthood isn’t about getting everything right the first time; it’s about doing your best and being flexible when life throws you curveballs. When raising a child with hemophilia, sometimes things won’t go as expected, and that’s OK. What’s important is to be prepared to adjust and adapt.
Let your child be more than hemophilia
One of the biggest lessons I’ve learned is that a person is so much more than their health condition. It’s easy to let hemophilia take center stage in the parenting journey because it requires so much attention. But remember, your child is a person first — with their own unique interests, passions, and dreams. Don’t let hemophilia define their life or overshadow the individual they are becoming.
Teach them to live, not just survive. Help them learn the life skills they’ll need to adapt and thrive, even with hemophilia. It’s not about shielding them from every possible risk, but teaching them how to manage their condition independently.
Focus on quality of life and emotional health
Raising a child with hemophilia isn’t just about managing their physical health; it’s also about nurturing their emotional well-being. The toll that a chronic health condition can take on a child’s mental health shouldn’t be underestimated. Physical limitations and medical treatments can sometimes make life feel overwhelming for them. As parents, it’s crucial to ensure your child doesn’t believe that life isn’t worth living because of their condition.
Your role isn’t just to help them manage hemophilia but also to support them in building a life full of joy, hope, and purpose. By addressing their emotional needs and ensuring that they know they are loved and supported, you’ll help them develop resilience in the face of their challenges.
Prepare them for the future
One of the hardest but most important lessons as a parent is that you won’t always be there for your child. This is true for all parents, but especially so for parents of children with hemophilia. Teach your child how to manage their condition so that they can live independently. They need to know how to handle life without you because one day, they’ll have to.
At the end of the day, parenthood is messy. None of us have it all figured out. But you only get one shot at raising your child, so make the most of it. Learn from your mistakes, grow with your child, and give them the tools they need to lead a full and vibrant life.
Jared’s message is simple: While the parenting journey may be difficult, it’s also filled with opportunity. As parents, you have the unique chance to guide your child toward a future where they live not just in spite of hemophilia, but alongside it. Parenthood isn’t perfect, but the lessons you learn — and teach your child — are priceless.
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.
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