Time flies so surprisingly fast. It just dawned on me that I’ll be a father in three months; my wife, Cza, is already 26 weeks into her pregnancy. There’s a lot of pressure, but I hope that my kid can be proud to have me as a father. It’s of prime importance that my child knows my limitations as a person with disabilities (PwD) as early as possible. So, I’m dedicating this column to what I want to share with my future child.
I would like my child to understand the difficulties that people with mental and physical disabilities face. I pray that this understanding will lead my child to become an empathetic, compassionate person. I also hope that seeing me in tough situations can help build character. I want my kid to develop resilience by seeing me face my difficulties as a PwD.
I feel anxious that I may not always be around in times of need, but I’ll try my best to make up for it. As much as I want to be a protector and provider, my illnesses make me feel trapped. I worry that may create a rift between us because daddy won’t always be there.
A special kind of family
I’ve already planned some ways to make up for what I can’t do. I can be a good listener, play simple games, and do the occasional daring thing to make my child feel loved. I’ll also share my experiences of growing up with chronic illnesses. I don’t want my child to pity me. It’s important that they understand that life isn’t always pretty. They shouldn’t have to get bogged down when things don’t go their way.
I may sometimes get incapacitated by bleeds or seizures, but I want my child to understand that it’s OK when things can get messy. I constantly think of more creative ways that my child and I can connect despite my limitations. My kid may occasionally feel bad for me because I have chronic illnesses, but I would never want to make them feel guilty for my hard life. I want to assure them that they’re a blessing by simply being a part of my life to love and care for. That alone makes me feel proud as a father.
As much as I want to be a superhero for my kid, I don’t know if a parent with hemophilia and epilepsy can make the cut, but I promise I’ll still be the best father I can be.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.