What it's like to be the parent of a child with a chronic illness: 'Every day feels like a struggle'
Judawn Merritt didn’t think anything was seriously wrong when her 11-year-old son, Luke, mentioned offhand that his lip had been numb all day.
“I had given him an allergy medication that morning that he hadn’t taken before and I gave him another one right before he said that,” Judawn tells Yahoo Lifestyle. “I laughed and said, ‘I wish you would have told me that before.’” Concerned he might be having a reaction to the medication, she called his doctor, who just told her to keep an eye on things.
But by the next morning, Luke’s left fingertips were numb. Judawn brought him to the doctor, who wasn’t sure what was going on. “By the next day, his arm on the left side was numb,” she recalls. Luke ended up having an MRI to check for a pinched nerve, but none was found. Still, his symptoms got worse. “Within a couple of days, his whole left side was numb,” she says.
Luke wanted to go to school during this time, but he called twice to come home because he couldn’t make it through PE class. He even sprained his ankle at one point. “He was limping and was doing what we later realized was a drop-foot, a classic sign of MS,” Judawn says. “I knew something was really wrong.”
Luke’s symptoms kept progressing, and Judawn eventually took him to the emergency room. There, another MRI was done to look at his brain, and lesions were found. (MS is typically diagnosed this way, according to the National Multiple Sclerosis Society.)
The family was referred to a children’s hospital hours away from home, where Luke was given further testing and treated with steroids. “It was just a whirlwind, and he was very scared,” Judawn says. Luke had always been scared of needles and, unfortunately, he was “poked about 1,000 times” during testing, she says. “That was superhard for him, but his body was falling apart,” she says.
‘He’s had a long haul’
Luke was eventually sent home and did physical therapy to try to gain back the use of his left side. He also tried to go back to school. “That was difficult because he had fatigue,” Judawn says. “He can sleep 20 hours when he’s not doing well.” He also started weekly injections of a disease-modifying drug.
Still, he’s had relapses. When he was 13, he started to have an MS flare that lasted for several years. With it, he had numbness, pain in his cheek and headaches. This summer, Judawn and her husband were in Texas with one of their daughters when Luke called to say that he couldn’t feel his glasses on his face. Judawn initially thought it was because the air conditioning had gone out in their home (heat can exacerbate MS symptoms), but “he went downhill quickly,” she says. Judawn’s adult daughter took Luke to the hospital, and he quickly became paralyzed on his left side again.
He was again sent to a hospital hours away from home, where Judawn pushed for him to undergo plasmapheresis, a treatment that filters the blood and removes harmful antibodies. “That worked, and he was actually able to walk out with a cane,” she says. This past December, Luke, now 16, finally had an MRI that showed no new lesions.
‘Every day feels like a struggle’
Dealing with Luke’s symptoms and diagnosis is “definitely the new normal, but every day feels like a struggle,” Judawn says. “It’s been difficult because this all happened during puberty and Luke growing up.” She says it’s also been hard at times to try to figure out whether certain behaviors are due to MS or Luke simply being a teenager.
“I felt guilty in the year after he was diagnosed because I pushed him to go to school when he would say he wasn’t feeling well,” she says. “That’s been my biggest fear parenting — I don’t want to push him in the wrong way.”
But Judawn says she doesn’t want to parent Luke only thinking of MS. “Sometimes you have to parent to the sickness, but you also can’t say, ‘Oh, it’s OK that you didn’t do this or that you were rude because you have MS,’” she says. “You still have to say, ‘Yeah, that doesn’t cut it.’”
Fatigue is a huge issue for Luke, and Judawn says she’s still trying to figure out how much to push him. “If you’re really sick, you can only push yourself so far,” she says. “But I’m also trying to teach him that this is his life, and he can’t not push or give up. It’s been hard.”
Before his diagnosis, Luke was really active in sports and he’s had to give them up while his friends have kept up with them. “That’s been difficult to see,” Judawn says. “The same kids that he grew up with, their lives have continued the same, while his has changed so much.”
Luke, who is African-American, is adopted, and Judawn, who is Caucasian, also worries that his illness will make him feel even more different than he already does. Still, she says, she constantly reminds her son that he has a lot to offer, even if it’s different from what his peers may have. Luke has also been “forgotten by many, many kids,” Judawn says. “It’s not their fault, because they are kids and teenagers, but it’s very painful for Luke.” And it’s also painful for her, as a mom, to witness.
Judawn eventually discovered the Pediatric Multiple Sclerosis Alliance, an advocacy organization and support group for children and families affected by MS. “I would not have survived without them,” she says. “They have truly saved my sanity. Plus, several strong moms gave me the courage I needed to fight for Luke.”
The mom wants other parents to know that it’s OK to feel overwhelmed, angry and sad when parenting a child with MS. “You will grieve. You should and it’s normal,” Judawn says. “You grieve the loss of the future you thought would be there. Life changes. The dreams change. Honestly, everything changes.”
While Judawn acknowledges that the future can be “scary,” she says she’s so proud of how her son has handled his diagnosis: “One look at his smile, his courage and his determination, and you will see a young man that won’t let MS win.”
Read more from Yahoo Lifestyle:
What you need to know about MS, a disease that probably affects someone you know
From suicidal to ‘thriving’: Montel Williams details his emotional journey with MS
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