{"id":11719,"date":"2015-10-13T04:37:02","date_gmt":"2015-10-13T11:37:02","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11719"},"modified":"2025-12-30T04:38:29","modified_gmt":"2025-12-30T12:38:29","slug":"eaping-rewards-unexpected-role","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/fr\/family-stories\/eaping-rewards-unexpected-role\/","title":{"rendered":"Reaping the Rewards of an Unexpected Role"},"content":{"rendered":"
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When Kevin and Loraine Dressler of Huntington Beach, Calif., entered their 60s a few years ago, they started looking at retirement communities. Kevin, an inventory analyst for Suzuki Motor of America, had two adult sons from a previous marriage who were living in Arizona, so relocating there was a possibility. Loraine, a former intensive care nurse and nurse case manager, had two adult daughters who were both living on their own. The couple was looking at places with lots of leisure activities and thought about buying a motor home and visiting U.S. national parks.<\/div>\n<\/div>\n
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But that\u2019s not what happened.<\/p>\n

A Surprise Diagnosis<\/h2>\n

Loraine\u2019s daughter Kristl had experienced a rough adolescence, had dropped out of high school before graduation, and had difficulty holding a job for long. Eventually, after arguments with her parents, she left home. \u201cShe didn\u2019t want to go by house rules,\u201d Kevin says, \u201cand then we sort of lost track of her for about 10 years.\u201d<\/p>\n

Then, in 2012, Kristl was suddenly back in Huntington Beach, with a boyfriend, a baby on the way, and a wedding to plan. Retirement, the Dresslers decided, would have to wait.<\/p>\n

Things did not go smoothly. As she entered her sixth month of pregnancy, Kristl was larger than expected, prompting an ultrasound that revealed an excessive amount of amniotic fluid and a baby that wasn\u2019t moving. After a two-hour ultrasound exam, an astute radiologist told Kristl and Loraine that he thought the baby might have the congenital form of myotonic dystrophy, a genetic disorder that affects the muscles and many other systems in the body.<\/p>\n

A consultation with a medical geneticist and DNA testing soon confirmed the diagnosis. The baby had the severe, congenital form of type 1 myotonic dystrophy (DM1), while Kristl had the juvenile-onset form of the disease, and Loraine had a moderate type of adult-onset DM1.<\/p>\n

(DM1 is caused by an expanded section of DNA on chromosome 19, which tends to get larger with each generation in a family. In general, larger expansions are correlated with earlier disease onset and more severe symptoms. For details, see\u00a0How DM Affects Your Body<\/a>\u00a0and the\u00a0MDF\u00a0Toolkit.<\/a>)<\/p>\n

Scared and Shocked<\/h2>\n

A lot of things now started to make more sense. Loraine\u2019s brother had died at age 47 of respiratory difficulties, almost certainly attributable to adult-onset DM1. Loraine had experienced hip joint abnormalities and had undergone replacement of both joints, prompting an early retirement from her nursing career. That too, it now appeared, was likely caused by her DM. And Kristl, whose cognitive and physical limitations had interfered with her education and employment, could now put a name to her disorder. Unfortunately, the baby, with congenital DM, was in an urgent situation, likely to be born unable to breathe or eat without immediate, high-tech medical intervention.<\/p>\n

\u201cI was scared and shocked,\u201d Kevin remembers. \u201cThrough all my life up to that point, things were real easy. There was nothing dramatic \u2013 no crises, no health issues. This was one of the biggest things to hit my life.\u201d<\/p>\n

The baby, who would be named Zen, was born on May 14, 2012, two months ahead of schedule and weighing just a little more than 4 pounds. Pale and limp, he was placed on a ventilator within minutes and would spend the next eight weeks in a neonatal intensive care unit. For sustenance, he would depend on formula via a feeding tube for the first year of his life. Predictions were dire. \u201cThey thought Zen might never be able to eat regular food,\u201d Kevin says. \u201cThey thought he might be blind.\u201d<\/p>\n

Kristl and Loraine visited Zen in the neonatal intensive care unit (NICU) every day, and Kevin was there as much as possible. \u201cI was sad for Zen when he was in the NICU,\u201d Kevin says. \u201cMy role then, though, was more as a caregiver to Loraine, supporting her during that time, doing whatever she needed me to do.\u201d He remembers wondering how he would ultimately fit in and how he would deal with the sudden changes in his family, including navigating new relationships with Kristl and her partner, coping with a DM diagnosis affecting three family members, and caring for a new baby who at best would require a great deal of complex care and at worst might not survive.<\/p>\n

Kevin knew, however, that he and Loraine would have to support this young couple with a sick baby. At that point, he says, \u201cYou don\u2019t run away; you jump in and take over.\u201d<\/p>\n

An Expanded Role for Kevin and Loraine<\/h2>\n

After a rocky couple of months, Zen was finally able to go home to his parents\u2019 apartment in July. The marriage, however, did not last, and Kristl and baby Zen soon moved in with Loraine and Kevin.<\/p>\n

Kevin\u2019s role quickly expanded to include baby care during the hours he was not at work. (Kristl, now 31, is involved with Zen\u2019s care but is hampered by her own DM symptoms.)<\/p>\n

The Dresslers have become full-time caregivers, even though Loraine, now 62, is beginning to experience fatigue and other DM manifestations herself. \u201cLoraine and I are both Zen\u2019s caregivers,\u201d Kevin says. \u201cShe\u2019s there during the day, and I do the evenings. On weekends, I take care of Zen so she can do housework, but I also help her to do those things. If she wants to be in bed or at the computer, that\u2019s fine. I can play with Zen, take him for walks, feed him.\u201d<\/p>\n

Kevin says he\u2019s always considered himself \u201con the shy side,\u201d someone who doesn\u2019t have many friends. The caregiving role, he says, has given him \u201can opportunity to get out of my comfort zone\u201d and has given him a sense of his own worth. \u201cWe have three people with DM in our household,\u201d Kevin says. \u201cAnd I\u2019m OK with that. I totally am. I always thought of myself as willing to help others, to be there for them.\u201d<\/p>\n

Zen Is Doing Well<\/h2>\n

Zen is now 3 years old and \u201cblossoming,\u201d Kevin says. \u201cHe\u2019s coming more alive and is on the road to being an active, typical kid\u201d who has exceeded early expectations. He can see and hear, walk, eat regular food without a feeding tube, and breathe on his own, although he requires daily respiratory treatments.<\/p>\n

Zen has signs of autism (not uncommon in congenital DM) and receives 19 hours a week of special therapy for that condition. He loves the therapy sessions, where he\u2019s learning to use a cup and spoon and match objects to their correspondingly shaped holes.<\/p>\n

He now says a couple of words and reacts to people with emotion. He also loves going for walks, riding his toy car, and eating. He\u2019s been to Disneyland and Disney World, where he\u2019s finally big enough to go on the rides.<\/p>\n

\u201cThe thing we want to do is make sure that Zen has the best day he can every day,\u201d Kevin says, \u201cand keep him happy, healthy, safe and loved.\u201d<\/p>\n

Support Groups and Conferences<\/h2>\n

Although plans to visit the national parks are on hold, Kevin and Loraine have learned the ins and outs of traveling with a baby with special needs, and they\u2019ve attended several conferences and support groups. In September, Kevin was on a panel with two other unaffected male caregivers at the 2015 MDF Annual Conference, held in Washington, D.C. Some 30 men attended, prompting the launch of a closed, private Facebook group for male caregivers in DM families. (See\u00a0Unaffected Male Caregiver: Caring for Spouses & Children<\/a>\u00a0and\u00a0Unaffected Male Caregivers Facebook Group\u00a0<\/a>on the MDF website.) \u201cThere\u2019s a lot to learn,\u201d he says, and sharing is helpful.<\/p>\n

The support group that Loraine and Kristl attended (while Kevin took care of Zen) recently moved to another state, so Kevin and Loraine have become facilitators of the MDF Support Group \u2013 Orange County.<\/p>\n

Doing More Than Just What\u2019s Needed<\/h2>\n

Asked what advice he had for male caregivers, Kevin offered these thoughts:<\/p>\n