A look back at the everyday miracles of our journey
Changing our perspective helped us recognize the special moments in life
The spiritual study program “A Course in Miracles” has interested me for years. Among other things, it encourages people to recognize the miracles in everyday situations. I’ve had some experience with such miracles.
Thanks to new genetic testing methods, Prader-Willi syndrome can now be diagnosed right after birth. That wasn’t possible for our family over three decades ago, when our son Robert was born with severely compromised health. We all loved this baby, but wondered what the future would bring.
A nurse who worked in the neonatal intensive care unit at the time belonged to our church. She cared for our boy during the two weeks he was in the hospital. As we were packing up to finally go home, she told us, “He’s going to be fine.” The comfort we felt from that declaration was our first miracle.
The developmental delays experienced by a child with Prader-Willi syndrome can be wide-ranging. Robert, now 36, wasn’t able to walk until the age of 4. Because we used swimming as physical therapy, he took his first steps in a pool. My sister and I were overjoyed when we witnessed that miraculous event.
Equine therapy was another strategy we used. We’d watch as the children in my son’s class struggled to walk into the arena. Minutes later, their faces would light up with joy when the horses paraded around in a circle. Parents were delighted to see their children move through space without effort. We relished this everyday miracle.
People were drawn to our son, who remembered everyone’s names. He was also included in several programs at our church and at school.
In fourth grade, at his principal’s retirement party, Robert took the microphone and spoke for several minutes about the gratitude he felt for his principal, teachers, educational assistants, and maintenance workers, mentioning them all by name. Parents were astonished by his vocabulary. It was a minor miracle.
Middle school children were encouraged to participate in our church services. They’d join a procession down a long aisle while carrying a heavy cross on a 4-foot staff. Robert insisted on doing it, too. I held my breath as he reached the steps to the altar. The congregation breathed a sigh of relief when a classmate of Robert’s assisted him up the stairs. Smiling faces surrounded me, enjoying a modest miracle.
Overcoming even bigger obstacles
When Robert was in high school, a friend encouraged him to join the speech team, which he did without special consideration. He received a letter for it his senior year, a miraculous achievement for someone with this syndrome.
Overall, though, high school was problematic for our son. More access to food led to weight gain, and his stubborn behaviors increased.
We believe Robert has the maternal uniparental disomy type of Prader-Willi syndrome. People with this type of the syndrome have a higher risk of developing psychiatric disorders, an issue Robert faced in his later teen years.
The summer after his senior year in high school, he became increasingly dissociated. He’d remove movies from a bookcase and scatter them about. It took hours to get him ready for a school program. He’d wake me up at 3 a.m. saying he was “going out for the bus.”
In December of that year, he talked about “going through a portal.” He was immediately admitted to a mental health facility. We visited him there, where we watched him continue to decompensate. Medications didn’t seem to have any effect.
New living arrangements had to be made. Our daughter and staff at another hospital recommended Stepping Out!, a program designed specifically for people with Prader-Willi syndrome. Bonny Bates, the program’s founder, was our next miracle. She educated us about the link between Prader-Willi and psychosis.
Robert moved into the program’s group home, where Bonny, a compassionate caregiver, helped immensely with his acclimatization. Weight seemed to melt off our son’s body during his first year there, thanks to exercise and diet. He lost 100 pounds!
The mental illness, however, was harder to shake. Several psychiatrists we visited just piled on more medications. Finally, a psychiatric nurse practitioner prescribed Haldol (haloperidol). With only a small dose, all of Robert’s delusions disappeared. Miraculously, we had our son back! (Note: Not everyone’s response to treatment will be the same. Always consult your medical team before starting or stopping a treatment.)
Years have passed since those unhappy days. Robert is now a beloved member of his community. On his birthday, a friend gave him a huge Pokémon card. The friend hugged him and said, “You are like a brother.”
Robert is actively looking for work and received a grant to help pay transportation costs. He’s proud he’s able to decide for himself when to leave family gatherings, and miraculously, our family driving time has decreased!
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.
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