Hopes for Our Own Home

Alliah Czarielle avatar

by Alliah Czarielle |

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seizure, boundaries, shared struggles, birthday, school years, future-proofing, mistake, bleeds, exercise, motherhood, small business owner, Christmas, change, living, crab mentality, home, golden retriever, business, routine, childhood illness, unfair

I have been struggling at home lately.

I always pictured a peaceful and fulfilling married life. As a wife, I thought I would be queen of my home. Each corner of our house would be filled with my favorite decorations, and our fridge, pantry, and bar would be stocked with my favorite foods and drinks. I’d have coffee in the mornings and cocktails in the evenings to unwind after a long day of work. On weekends, I’d lounge around in my underthings without a care in the world. I’d raise a carefree and comfortable family.

While I am happy in my marriage and in the bond I share with my husband, I pray some aspects of our situation soon change, primarily our living situation. Because we are still saving up for new investments, Jared and I must stay with relatives. It is often very difficult (and sometimes counterintuitive to our goals) to share a life with very different people. The people we live with are truly good at heart. However, it is challenging to feel empowered as an adult when you are uncomfortable being yourself.

Jared and I believe in openness in both deeds and communication. Between his hemophilia and seizures and my psychological issues, our lives have been far from normal. We welcome the “odd” and “different,” but we question what is generally considered normal. We believe people tend to suppress their authentic selves in an environment where there is only one type of lifestyle and people feel obligated to follow a certain norm.

We wish to get our own home to create our own family culture: A culture that is accepting of other individuals, but also honors personal boundaries; that isn’t disrespectful and doesn’t cross comfort zones, but stays true to personal values. We swear we will not judge each other, nor our daughter, if we do something different than what is socially expected. We want to be curious about what she is going through and seek to understand.

In our ideal family culture, all members would feel comfortable to express their thoughts and be their true selves. In effect, our minds and hearts would be at ease, allowing us to cope better with disability. People with chronic illnesses often spend a great deal of mental energy adjusting to the unique demands of their health condition. Carers like myself may also feel exhausted from having to balance many responsibilities at once. When we have peace of mind, we have so much more mental space to deal with the challenges of everyday life.

We also hope that if we are true to ourselves, we will be able to connect with our daughter in a deep and personal way. The parent-child bond is important, but it is also extremely volatile. Time and attention are essential elements in raising a child. Yet bleeding episodes may sometimes rob us of time and energy we could have spent with our daughter. If our bond with one another is both deep and strong, we hope we can still influence and guide her despite our limitations.

Family can tend to be overprotective of their loved ones with chronic illness, which is perfectly understandable because they care. However, this care can become smothering when it extends into the teenage and adult years, when a person needs to be free to make their own choices and learn from their mistakes. This is an essential part of growing up, and missing out on this phase can have a deep psychological impact on the chronically ill person.

Jared and I hope that one day, we will have our own home. Investing in real estate is expensive here in the Philippines, but we are determined to make it work. Nothing beats having peace in a place one can truly call their own home.


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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