The Joys of an Occasional Reprieve

The Joys of an Occasional Reprieve

I’d been sick with acute respiratory troubles for almost a week. Not a minute had gone by without a sniffle or a sneeze. My sinuses had been painful and horribly congested, my throat inflamed, and my stomach upset due to the collection of phlegm in my digestive tract. (Don’t get me started on the horrendous coughing fits!)

Being sick poses several challenges for me as a new parent. I am exhausted, and nighttime feedings are incredibly challenging when I barely have the energy to get out of bed. When our baby has a bad dream and wakes up crying, parental instincts kick in, rousing me from my light sleep and prompting me to get up to soothe her. Yet my shivering body is reluctant to move from under its pile of blankets.

Since the birth of my daughter, Cittie, I’ve spent each day dreading getting sick. In my mind, Mommy needs to stay healthy so that she can continue to provide baby with adequate care and my presence. I’m determined to be physically present and emotionally available to my child, even while growing a business and helping my husband, Jared, to manage his hemophilia.

I previously came across a book titled, “Being There: Why Prioritizing Motherhood in the First Three Years Matters.

One passage struck me:

“The truth is, we can do everything in life, but not at the same time. We cannot raise healthy children if we are not there for them emotionally and physically.”

And yet being fully present as a parent can be exhausting at times. Some days, we take Cittie with us when completing work requirements so that we can be fully present for her. (It’s a privilege we enjoy as remote-working businesspeople.) We head out with several bags in tow — one each with our personal belongings, a pack with stock items for the business, and a bulky diaper bag containing at least three milk bottles, a bib, a change of outfit, a pack of wipes, and enough powdered milk for four servings. Then we scoop up our 15-pound baby girl in our arms and carry her while walking over 10,000 steps — with no baby carrier involved.

I’m happy that we get to spend quality time with our child, even while we work. Yet the physical exhaustion gets to me at times. A part of me also worries about my husband, Jared, as we go about our daily lives.

I worry that the level of physical exertion involved in caring for a baby makes him prone to injuries and bleeds. He is aware that bleeds are inevitable, but he keeps pushing himself anyway. He’s always willing to give his best — plus a little more — in any endeavor, especially fatherhood.

Columnist photo;
Daddy carries Cittie in his arms, which are getting stronger with regular workouts. (Courtesy of Alliah Czarielle)

One day recently, Jared had a spontaneous hand bleed — not the worst sort, thankfully, so we could still fulfill our duties for the day.

We took Cittie out to eat to celebrate her 11th month. At the restaurant, we laughed at her signature eating style of picking food out of her scoop bib. Afterward, we strolled into my favorite stationery store to get a fountain pen repaired, and I walked out with some goodies. We enjoyed every moment of the day, and even a stop at the public diaper changing station elicited a few laughs.

Columnist photo;
Cittie on an outing with her mommy. (Courtesy of Alliah Czarielle)

As the wife of a person with hemophilia and a tired new mom, I live for days like this. Any moment I get to spend resting, relaxing, and enjoying life with my family is precious. It makes up for the times I feel worried or concerned when either Jared or I happen to be struck down.

What can I say? Sometimes, all I need is a reprieve.

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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.

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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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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