Advice for moms who share the challenge and joy of parenting a chronically ill child
The first night I rushed my daughter to the emergency room (ER), I was sure she had meningitis. She hadn’t been able to walk up the stairs, and she was complaining about her neck, screaming through her tears that she couldn’t move it.
My four-year-old was in real pain, and I was terrified.
It wasn’t meningitis, but clearly something was wrong. By the next morning, her right leg was dragging, and her complaints of pain hadn’t subsided.
What followed was four months of emergency room (ER) visits, MRIs, and appointments with specialists. I was told she could have anything from leukemia to a brain tumor, multiple sclerosis to Lyme disease.
The entire ordeal was traumatic, and I was mostly alone through all of it.
I adopted my daughter on my own just a few months shy of my 30th birthday. I like to joke that saying yes to taking an infant (when I’d been planning on fostering teenagers) was the best stupid decision I’ve ever made. But the truth is, she really is the best thing to ever happen to me, and she is absolutely the love of my life.
So seeing her in pain, knowing something was wrong and not knowing what it was or how to fix it, was excruciating.
When we finally got a diagnosis, it turned out to be the least scary of all the possibilities: juvenile idiopathic arthritis (JIA). I was relieved—at first.
But then I learned more about what JIA would mean for my daughter’s future. This wasn’t just a lifetime of pain she’d be dealing with; it was also the risk of permanent joint damage, potential blindness, and a long list of scary medications that could impact her fertility and life expectancy.
Today, my daughter is on a weekly chemotherapy regimen to suppress her immune system, which means she’s also at a greater risk of illness than most kids her age.
But . . . she’s running and playing again. Two years after her diagnosis, she can swing on the monkey bars, whereas just before diagnosis, her little wrist had completely frozen up. The medication she’s on does its job and suppresses the disease, so I try to do mine by not worrying about all the rest.
I have an amazing support system: friends who have taken the time to understand my daughter’s condition and help however they can; a school that loves my little girl and accepts the ways in which this disease sometimes limits her; and an online community of mamas raising kids with the same condition my daughter has—women I often turn to for information when I can’t find what I need anywhere else.
I’m lucky, and yet there are still those nights I lie awake, wondering if her current complaints warrant an ER visit or if her fever is going to spike while I’m sleeping. I desperately want to turn to someone who is equally invested in her care and say, “What do you think of this?” or “Do you see how she’s walking? Should we be concerned?”
But I can’t because that person doesn’t exist.
A year after my daughter’s diagnosis, we attended a national JIA conference together. There, we met other kids with her condition, and I was able to network with other families who understand our struggles.
I went to a panel of single moms, expecting to hear complaints similar to my own, women talking about the pressures that come with being the sole person making all the medical decisions. Instead, I heard tales of horrible bosses threatening to fire women for taking too much time off to care for their kids, or doctor’s offices chasing mothers down for tens of thousands of dollars these women had no idea how to pay.
I sat there, humbled. My daughter is Alaska Native, which entitles her to free health care. I’ve never once had to worry about how I was going to pay her medical bills. And as a writer, I work from home—which means I’ve always had the flexibility to take my daughter to her many doctors’ appointments and to keep her home with me whenever she’s in the middle of a flare-up.
I’m lucky. In a million different ways, I’m lucky.
Karen Kelly gets it. Her daughter was diagnosed with cystic fibrosis at age two, but she recently told me she feels lucky because she works in the medical field, so “there is a degree of understanding of medical issues” when it comes to her missing work. Kelly’s parents are also available to help whenever her daughter is hospitalized so that her daughter always has someone with her. “But the guilt of not being there can still take me back sometimes,” she explained.
Tiffany Taylor works as a nurse and has also been able to secure decent leave to care for her son who was diagnosed last year with PANDAS, or pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. But she said that child care and finances are her biggest struggle. “Finding someone to help nanny my son during the long hours I work is a constant battle,” she said. “I often feel ashamed that I’m in debt, but I work as much as I can and do the best I can with what we’ve got.”
Having a sick kid is hard no matter what, but when you’re the only one responsible for deciding if a hospital visit may be called for or if it’s time to move on to the next (awful) drug or how to pay for the mounting medical costs . . . it’s completely overwhelming sometimes.
If you’re in this boat and currently struggling with all the stress, fear, and responsibility resting squarely on your shoulders, here is some advice from other Solo Moms who are in similar circumstances:
1. Find your tribe. Whether it be friends and family who are willing to step up and support you or an online community of other moms with chronically ill kids, find the people you can turn to and ask for help. You may be a Solo Mom in this, but that doesn’t mean you have to be alone in it.
2. Know your rights. The Family and Medical Leave Act (FMLA) protects parents who need to take time off from work to care for their kids. If your boss is threatening to let you go, visit your human resources department and brush up on employment rights.
3. Negotiate payment plans. When the bills start rolling in, call the doctors’ offices that are sending them and see what the office staff can do to help you. Some are willing to offer reduced fees on a sliding scale, and most will offer payment plans to help make life a little more manageable.
4. Practice self-care. However you define self-care—whether that means taking a bath and reading a good book or letting your parents watch your kiddo for the night so that you can get a solid eight hours of sleep—do whatever you need to do to take care of you.
Parenting a chronically ill child is scary and stressful, but you are strong and capable, and your love for your little one will help get you through.
Are you parenting a child who requires more than usual care? We’d love to hear how you are coping and, of course, any tips you might have for other moms.
Leah Campbell is a single mother by choice after a serendipitous series of events led to the adoption of her daughter in 2013. Author of the book Single Infertile Female: Adventures in Love, Life, and Infertility,Leah has perfected the art of oversharing, scaring men away, and tripping at inopportune moments. You can visit her website, Leah Campbell Writes, and also find her on Facebook, Twitter, and Instagram.