The Importance of Caring for My Mental Health During the Holidays

In some alternate reality, receiving my diagnosis of late-onset Pompe disease would’ve made all my problems go away. But in this universe, my rare disease is only one piece in the puzzle of my life.

Six months before my diagnosis, our oldest son, Adam, passed away at age 22 from a brain tumor that no one knew he had. Not even his doctors and counselors realized it was the cause of the 180-degree shift in behavior he’d been experiencing for three months.

I was diagnosed with Pompe disease in November 2018, and a year later, my wife received her own rare diagnosis of cervical dystonia. A cousin of Parkinson’s disease, the painful neurological condition causes her neck muscles to contract involuntarily.

I’m now a Pompe patient and a caregiver to my wife, and wearing both hats can drain me physically and mentally. And while I’m fighting the physical battle of Pompe disease, my mind is fighting the demons of losing our son way too soon.

Sometimes it feels like life is throwing everything including the kitchen sink at me — especially during the holiday season.

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Coping with grief during the holidays

Even with holiday music in the air, there’s an emptiness in my soul and a hole in my heart. Nov. 25 was Adam’s birthday. Sometimes it fell on Thanksgiving, which was his favorite holiday. He loved pumpkin pie and cheesecake.

Last Friday, while many were doing their Black Friday shopping, my wife and I were grieving the loss of our son. We’ve now celebrated five of his birthdays without him.

I always thought the hardest thing in life would be raising a child into adulthood, but in reality, it’s having to say goodbye to them for the last time. It’s no longer being able to hear my son’s voice. No parent should have to bury their child.

While the holidays are meant to be a time for giving thanks, the season just hasn’t been the same without our son. Last week, my wife and I found ourselves trying to stay occupied to keep our mental health in a positive space.

We planned a busy holiday weekend here in California. On Thanksgiving, we went to Universal Studios Hollywood, and on Friday, we took a long walk in Newport Beach, then drove south down the Pacific Coast Highway. We sat on Aliso Beach and watched the waves and the sunset. The next night, we attended a Kevin Hart comedy show at the Honda Center in Anaheim; after all, it’s been said that laughter is the best medicine for a weary soul. Sunday ended with a football game and time spent with my 86-year-old mom at the San Clemente outlet mall.

But even when we’re busy, the pain, anger, frustration, and sadness never go away. I can’t help but think about what I’d give for another day with my son. I wish I could drive Adam to 7-Eleven, GameStop, or the YMCA. Play Mario Kart or Super Smash Bros. with him one more time on the Wii. Hear him cheer on Dad’s Miami Dolphins and say, “This is the year the Dolphins are going to the Super Bowl!”

Adam was so happy-go-lucky, and his smile was infectious. But in the blink of an eye, he was gone.

Finding a path forward

Like Pompe, Adam’s death is one piece in my life’s puzzle. While many of my “puzzle pieces” have been challenging and painful, together, they form a masterpiece. As a friend told me recently, it’s OK to have sadness in one part of your heart and gratitude in another.

Prioritizing my mental health is key to moving forward, and sharing my story helps me find my path.

It’s good to be surrounded by friends and family who encourage me during this hard time of the year. I’m learning that it’s all right to feel all my feelings and share what’s in my heart. I’ll keep moving forward “On the Road to Pompe” — just at my own pace.

Note: Pompe Disease News 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 other 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 Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.