Choosing happiness in life with Prader-Willi syndrome

We all have struggles in our lives, some more than others. As an older mother, wife, and grandma (known as “G-Honey”), I can’t believe the beautiful life I’ve been given.

My younger years were filled with chaos. Both of my parents were alcoholics and many surrounding relatives used one substance or another. My younger sisters and I were adrift in our teens, with no functioning adults in our lives. At 20, I was well on my way to developing the family disease.

It was a wild time full of drugs, alcohol, and parties. Thankfully, I started working at a restaurant that trained me in what became my life’s work: cooking.

I got married at 28, and we were (California) sober. We still smoked a lot of pot! Life changed quickly at 30 when I was diagnosed with breast cancer. Of course, it was devastating for all involved, but two years later, I gave birth to a baby girl. She was everything to us. I found sobriety and never relapsed. My husband would also gain sobriety.

Six years later, I gave birth to a baby boy. His low muscle tone and inability to suck launched him into the neonatal intensive care unit, where he remained for two weeks. Doctors couldn’t find a reason for his condition at that time. It wasn’t until Robert, our son, started gaining weight at an alarming rate that he was diagnosed with Prader-Willi syndrome.

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Life takes a turn

Life changed dramatically. Our daughter felt abandoned by us as parents, as we could focus only on the problems we were facing. It would take work and determination to keep our family whole. My mother, who had been living in California, returned to Minnesota, sober, to help us. I don’t know how we would have managed without her.

Worry takes a terrible toll. Preoccupation and fear stole my life. As I learned more about Robert’s syndrome, I worried about his future. Reading inspirational books changed my life and helped me focus on the now. It didn’t happen overnight, and I struggled every day to choose to be happy.

We enrolled our son in programs where he could ride horses, something I love. Just being around horses calms me. He also skied, rode his trike, and we swam together many times as a family. We had fun.

I received support from friends, my church, and various organizations by being humble enough to ask for help. My friends and family all had a sense of humor, and being able to laugh about the things that overwhelmed me made a huge difference.

I helped support our family by starting a home-based catering company. For those of you familiar with Prader-Willi syndrome, you might be thinking “insanity!” At the time, Robert was 4, and we didn’t know that being around so much food would cause him anxiety. It wasn’t until his teen years that anxiety was mentioned.

His high school years were challenging. Robert was engaging and manipulative, and was able to gain access to food at school and social events. Soon, his weight gain became alarming. We were proud of his many achievements, including a varsity letter in speech, but mentally, he was decompensating.

In December, after his senior year, he was hospitalized for a month due to mental illness. We were lucky to find a group home that specialized in Prader-Willi. We let go of our beloved son, knowing it was the right thing to do.

Slowly, things changed. His mental state improved, but Robert still lived in a parallel universe. He had 2,000 imaginary brothers and sisters who needed him more. On a more positive note, Robert shed 100 pounds within a year.

Five years after joining the group home, a psychiatric nurse practitioner prescribed him Haldol (haloperidol), an older psychiatric drug, to take along with his other medications. Robert recovered and has continued to stay mentally well. He’s now 36 years old.

Reading this, you might be thinking, “What a terrible life!” But the opposite is true. During our worst times, many people supported us and helped us through. Even my catering clients exposed me to unimagined opportunities. I gained writing experience by attending classes and wrote a book, “Raising Robert,” which one of my clients paid to have published.

Today I am an empty nester, and I’ve enjoyed traveling and swimming in large bodies of water on other continents.

Having a platform like Bionews, the publisher of this site, will help me to spread encouragement to others affected by Prader-Willi syndrome. I look forward to sharing some thoughts on how to navigate a tough world.

Note: Prader-Willi Syndrome 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 Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.