Why I Choose to Look at the Positive Side of My Daughter’s Chronic Illnesses

They say bad things happen in threes. For our family, that was certainly the case. First, we sold our house, only to have the buyer not show up at settlement. Imagine moving all of your stuff out of your house then being forced to move everything back into a house you no longer wanted. I remember sitting on the floor of our empty house, thinking, “Can this really be happening?” The second blow to our family came in the way of work. Like a lot of manufacturing companies, we were struggling. So much so that the stress became unbearable, and I wondered daily if I would be able to put food on our table. But our “move” and my work troubles paled in comparison to another challenge: my daughter’s health.

Beginning at the age of about 8, my daughter, Lauren, complained about belly pains and headaches. These complaints were somewhat sporadic, and we attributed the pains to seasonal allergies. But the frequency and severity of her ailments seemed to increase until we began to seriously question if something else was wrong. Finally, in the fifth grade, she was tested for gluten sensitivity. The results came back positive.

Considering the blood test, doctors advised Lauren to stay away from gluten products and avoid any cross-contamination. After a few hiccups along the way, we had it under control. And the results were remarkable. Lauren glowed, looking healthy again. This was short-lived, however. To conclusively determine if Lauren had celiac disease, she was forced to undertake the gluten challenge. The name was very fitting, as she was required to eat gluten every day for about three weeks, after which an intestinal biopsy was performed, verifying that she did, in fact, have the disease. But the weeks leading up to the biopsy were brutal. Wrenching pains, vomiting, mood swings, etc. As a father, it was simply heartbreaking.

With celiac disease, if you avoid the intake of gluten, you generally control the symptoms. But Lauren was unique. Her symptoms didn’t improve. In fact, she took a turn for the worse. Her weight loss was alarming. Her muscles atrophied, and instead of the six-pack of abs that she had from years of soccer, she had a stomach that slanted inward at an angle approaching 45 degrees. Finally, she was admitted to the hospital in an effort to reverse the continued weight loss. I remember lying with her in bed, wondering if she would survive. Her heart rate plunged below 30 beats per minute when she slept and simply standing elevated her heart rate by more than sixty beats per minute.

Although she was released from the hospital after three weeks, she wasn’t feeling any better. Over the next several years, she was in and out of hospital about 15 times. She was on a feeding tube through her nose for more than a year, something that was incredibly difficult to witness when it was first inserted. We were scared, we cried a lot and we didn’t know what to do. We saw countless specialists, from the best hospitals in Philadelphia to the Mayo clinic in Minnesota. Finally, about three years later, she was diagnosed with gastroparesis, dysautonomia and postural orthostatic tachycardia syndrome (POTS).

We’re still struggling as a family and still dealing with my daughter’s health concerns. We don’t fully understand her conditions, but one thing we have learned is there is no cure. It’s really about managing the symptoms and coping with the pain. She’s still on a feeding tube to this day, although this one is through her stomach, not through a tube in her nose.

Through all of this, I’ve felt like a failure at times. I’ve used alcohol to cope with the stressors, turning away those I love. I’ve felt helpless, watching my daughter waste away. I’ve become depressed with a cloud of sadness surrounding my days. I’ve blamed myself for my daughter’s condition, and I’ve felt sorry for myself, and for Lauren.

When we first had children, like many fathers, I said that it didn’t matter if we had a boy or a girl. I just wanted them to be healthy. And they were. And then they weren’t. Seeing that changes you. Seeing the sadness in a child’s eyes is something you can’t forget. The images of a child who can’t go to school and can’t get out of bed are forever imbedded in your mind. There’s a crushing weight associated with preparing your child’s feeding solution every night.

Conversations with your spouse always surround the health of your child and, at times, parenting your other children is something that is severely lacking. Depending on the song, music can be supremely depressing. Many times, music makes me cry. Reflecting on the way things used to be is dangerous. Watching her play soccer now can send me spirally into a hole of darkness. It makes me think of the days before her sickness when was she was the best player on the team. Now, she routinely falls to the ground, too weak to handle the physical contact.

Like I said, we are still struggling. Check that. We’re not struggling, we’re surviving. Struggling is a bad word. It has a negative feel to it, and that negativity is just something we don’t need as a family.

Instead, I’ve chosen to look at the positive side of life. It’s taken me awhile to get there. It’s taken therapy, and truthfully, it’s taken the help of prescription medication, something I’m not even remotely ashamed to admit. But reflecting on the joys in life and everything I have to be thankful for has been a world of difference. No longer do I say how bad things are for me, like moving out and right back into our house, my tenuous job situation and my daughter’s health. Instead, I choose to say, “I’m thankful that I have a house, I have a job, and although my daughter certainly isn’t healthy, things could be far, far worse.”     

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