Blog PostsMay 13, 2020

Op-Ed: Who Will Care for my Child if I Can’t?

As each week of this Coronavirus pandemic unfolds, we come to new realizations about all the ways it impacts us. In the Spina Bifida parenting community, our first big question was whether our kids were in a higher risk category if they caught this virus. Then how our kids would get the healthcare they need as resources shifted. But recently as we have seen some fellow SB parents diagnosed with COVID-19 have to self-quarantine, our deepest fear has surfaced as a credible threat.


Who will care for my child if I can’t?


Most of us have low-key worried about this since around diagnosis day. But it’s easy to push it to back of mind because there are usually more pressing issues, there are no easy solutions, and frankly it is scary to think about.


Our kids require more care than the average child, and much of that care is complicated and private. We have primal instincts as parents to protect our children, and we should. Their safety and dignity are essential. We have to be careful who we allow to provide their care.


Also, let’s be honest, it’s not like there’s a line of people offering to help out. Their care can be quite intimidating.


But at some point we have to accept we are not superhuman. To others it might seem so, when they see what we accomplish some days, or the tough times we have come through. But we know we are not invincible.


At any time you could injure your back and not be able to lift your child, cut your predominant cathing hand while making dinner, become disabled yourself in a car accident, or get a positive Coronavirus test and have to quarantine away from your child for an extended time. We know these risks, but we don’t necessarily know what to do about it.


A global pandemic is as good a time as any to think about contingency plans. There are no easy answers, and it looks different for every family. Here are some questions to consider.


  1. Who are all the potential caregivers? If your knee-jerk answer is “no one,” I know that feels terrifying. Try making a list of every possibility. Are the grandparents able to do even part of the care when you’re in a pinch? Do you have older children capable of stepping in occasionally without it creating relationship issues? Can you hire an occasional babysitter to train, or a caregiver through a Medicaid waiver? Is there another local SB mom, a school aid, or a nurse neighbor you trust? Starting these conversations may be awkward, but think of it as building a support network not only for yourself but for your child for years to come.


  1. What can you put in writing? One mom might keep a detailed health binder of notes from every appointment of her child’s life, while another mom has an MRI report stuffed in the bottom of her second-favorite diaper bag. If you’re the first type, you might be excited to make a guidebook called “The Care and Keeping of Baby Sophie,” but that sounds overwhelming to the diaper bag stuffer. Just think about what is essential in case you’re out of commission for any reason, such as specialist names and phone numbers, medications, allergies, med and cath schedules, and instructions for the potty program.


(It recently occurred to me I am the only person who knows how to fill my son’s weekly pill organizer. If I were abducted by the recently confirmed aliens tomorrow, my husband could figure out the important ones by looking at medication labels in the cabinet, but Nate might never take a probiotic again. I can easily scribble out which meds I put in the AM and PM slots in his pill organizer and tape it in the medicine cabinet to give me peace of mind.)


  1. And most importantly, what can our kids learn to do for themselves? We have to have short-term contingency plans in case something happens tomorrow. But every single skill they learn to do themselves decreases their dependence on other people (including us). If she can cath herself, you don’t have to worry about what happens if the school nurse is sick. If your son can do his own MACE, you and your spouse might have more babysitter options for a weekend anniversary trip.


What this looks like for you depends on your child’s age and abilities. If you have an infant, all you can do now is set your intentions on promoting independence as baby gets older. But the rest of us don’t have to think long to come up with that next skill our kids need to get more independent. Being stuck in the house during a pandemic may be the perfect time to practice new skills.


I know, it can be scary to think about these scenarios. It’s much more pleasant to go on telling ourselves it just won’t happen to us. But it’s a lot scarier to picture myself on my death bed (many decades from now, I hope) wondering who will take over my son’s care when I’m gone. Building a support network, having plans in writing, and promoting independence are the safety nets that give us actual peace of mind.

Author: Colleen Payne

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