silhouette of family of four walking outside

My Whole Family Has the Same Illness, and My Husband Cares for Us All


I’d heard through the years that when you met the right person to marry, you’d just know. That finally proved true for me in 1999, when I met the man who would become my husband, Chad. Engaged within four months, it had not taken me long to realize that not only would he be an incredible spouse to me, but he’d also make an extraordinary father to the children we had already started to name on days spent at the park dreaming about our future.

The road to parenthood wasn’t easy for us. Unbeknownst to us, we both had an underlying mitochondrial disease. Yes, you read that right.

Both of us.

It seemed as soon as I would solve one medical issue, my body found another. After we finally got pregnant with our first son, I heard people talk about how husbands slept all night, leaving the wives sleep-deprived. That didn’t prove true for me. Chad would change diapers before handing our children to me to nurse. We also bottle-fed so he could give me more rest time.

 

During the first six years of their lives Chad was the primary source of income. By 2010, we had all received the diagnosis of mitochondrial disease. In 2012, I began writing to try to supplement our income. It also provided an escape from the harsh reality that had become our life. Unfortunately, my body couldn’t keep up with the energy demand. I was constantly sick trying to be a full-time mother and writer. That’s when Chad stepped in and did what many men wouldn’t: he became Mr. Mom.

Chad let me sleep in every morning, always the one to get up with the kids and administer the many medications they take on a daily basis. He had a very strict routine he spent months developing, one he knew would work best for our children to allow them to thrive. While I know our children’s medical histories like the back of my hand, he brought a different perspective and angle to how best to care for them.

Medications are administered over six times throughout the day. Feeding bags are refilled, discontinued and started again, as both boys now have tubes. CPAP tanks are emptied and then filled again. Syringes must be washed so they are ready for preparation of the next day’s medications. Bath time and bed time routine consists of bed pads and pull-ups, making sure the oxygen concentrator tubing has been laid carefully through the hall so no one trips and connected to Noah’s machine. And last, but not least, he is a barber and the nail clipper. He is the disciplinarian when needed, and the fun father that plays games with his kids as his hobby.

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Over the last couple of years, we realized I would always get sick if I spent the night when the kids are in the hospital, so our procedure changed. I would go with the sick child to get them started, telling the nurses the medical history, and then Chad would come to relieve me, handling the rest.

The main symptoms of his mitochondrial disease are severe fatigue and myalgia. So, while doing all of these things selflessly to make sure his family does not fall apart, he often wears an ice pack on his upper or lower back. Cutting the grass requires liters of Gatorade and many rest breaks. If there is too long between meals, he has been known to black out. Fasting is a definite no no, but he’ll feed us before he eats every single time.

He rarely complains, and when asked if he’d rather work, go out with friends or take care of his family, I am 100 percent sure he’d say be with his family. There is nothing Chad wouldn’t do for his children or his family, despite his own limitations. He is the epitome of the word father.  I’ve heard people say that if something seems too good to be true, then it probably is. My husband, the father of my children, proves otherwise.

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Thinkstock photo via syntika.

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