Raising a Successful Family Amid Hemophilia

Raising a Successful Family Amid Hemophilia

At 28 weeks pregnant, it seems I have entered my “nesting” phase.

Two days ago, my husband Jared and I chanced upon a good deal for a crib. We had no intentions of getting a crib then, but by a stroke of serendipity, we ended up with one anyway.

Our dream crib came in a damaged box — hence the 50 percent markdown. But the product inside was in pristine condition. It did have a few scratches here and there and a depleted battery, but they were things that could be dealt with easily. We didn’t have to think twice before closing on the deal because it was just too good to pass up.

Today, we drove more than four hours, patiently enduring the many traffic standstills that plague metropolitan Manila, to reach an abandoned apartment unit where a couple had left a decent stroller. After viewing the stroller and fitting it into the car, we decided to buy it.

As a young couple living on freelancers’ wages, discount items and secondhand belongings are our new best friends. As an only child, I was accustomed to only new things and the occasional brand-name item. The thought of wearing hand-me-downs or even sharing relatives’ clothes made me feel awkward and uncomfortable. Yet, my childhood days are far behind me, and I have since learned to accept my present circumstances in life.

Growing up, our generation was fed the message “dream big.” Yet, according to an article in Psychology Today, to live a truly successful life one must remain in touch with reality — and this reality often includes our limitations. In my husband’s case, he is limited in some ways by his hemophilia and epilepsy.

I’m not complaining — it’s a reality of life, as much as it is my reality not to have much money or material possessions, or not be suited to a 9-to-5 job. The last time I had a regular job, I suffered unimaginable burnout. I don’t blame my employers or anyone around me for my experience. I have accepted that my chronic depression may have been a huge factor, and I am slowly learning how to deal with it. While my coping methods can be painful, they are necessary.

Thankfully, both of us seem to have gone past the stage of moping about not being able to find a “secure” job. We have learned to take other perspectives, such as the entrepreneurial view which refutes the myth of traditional security in the form of a monthly paycheck. Ever since we started our business, we have learned to take risks while staying within safe boundaries. Doing business has its ups and downs — sometimes we win, sometimes we lose. And while losing money is painful, we are learning invaluable lessons.

Attending seminars on business and financial matters also has helped us significantly with our money management.

We still have a long way to go, but for now, our goal is to raise a healthy and balanced family amid the challenges posed by chronic illness. And while we dream of being successful in raising our child, we mustn’t lose sight of what truly matters. To quote Psychology Today: “A life with love and meaning is a successful life.”

I think we’ve got that part.

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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.

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Alliah Czarielle, or Cza for short, is a life partner to a person with hemophilia and epilepsy. Her life's dream is to enjoy a happy and contented life with her family, while pursuing her own passion for arts, crafts, entrepreneurship, and fine jewelry. She is a strong advocate for equal rights and support for people with disability, as well as people with mental illnesses, being a struggler herself.

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