A Practical Guide for Helping Zebra Parents

In my world, time is the most valuable asset. It is truly the one thing that is a limited, nonrenewable resource. For parents of children like mine, ones with rare and chronic illnesses, time is a force to be reckoned with. We are always worried about it and live in a state of lack surrounding it. When will my child ______ (walk, talk, heal, etc.)? When will they feel ______ (energized, free of pain, hopeful, etc.)? When can I ______ (shower, cook, clean, sleep, etc.)? And the ultimate question; when will I no longer be able to ________ (hold them, feed them, care for them, etc.)?

I recently broke down. A 100% certified mental health episode. Crisis. Call it what you will...it was rough. During a follow up video visit with the crisis team (or whoever the heck they were) the nurse and social worker validated me up and down. "Wow, that's a lot." "That sounds very stressful." "Thank you for sharing" Rinse. Repeat, ad nauseum. When we finally got to the end of the visit, they asked the damning question- "How can we help?"

I replied with the nicest blank stare I could muster.

I am not the problem. Changing my medication will not help. Adding yet another weekly appointment to my already-jam-packed schedule that includes the additional difficult task of finding care for my son during a pandemic...will not help. Let us not forget the days of fallout while processing and trying to heal from the constant state of trauma and stress that we live in. It was then that I realized, truly, this is a systemic issue. Both on a macro and micro level.

According to the CDC, caregivers are at increased risk for having multiple chronic diseases as they may neglect their own health needs while caring for others. Caregivers also have poorer quality sleep and more than half of them report declines in their own health affect their ability to give care.

Consider this-

Approximately 25% of U.S. adults 18 years of age and older reported providing care or assistance to a person with a long-term illness or disability in the past 30 days, according to 2009 data from CDC’s state-based Behavioral Risk Factor Surveillance System. This is termed “informal or unpaid care” because it is provided by family or friends rather than by paid caregivers. The one year value of this unpaid caregiver activity was estimated as $450 million dollars in 2009.

Now, how can we help parents who are caring for a child with a rare or chronic illness?

Lean In

Volunteer to learn about the child. Ask questions. Say the words, "I want to help, but I don't know how." Your questions let us parents know that you're interested in our lives, our needs. Have honest conversations about being fearful of unfamiliar medical equipment and "odd" behaviors. It's with this conversations that we begin to bridge the gap of isolation and alienation.

Offer Your Talents

I get it. Not everyone is a nurse, teacher, therapist, etc. Use what talents YOU have! Maybe you have a green thumb- offer to mow the lawn 1-2x a month. Heck, I would love someone to come weed my front walkway! Maybe you are a wiz at meal planning. Check for allergies/dietary needs, then offer to plan a weeks worth of meals. Maybe you have your massage license- (y'all are gifts from God I swear!) - you can see where I'm going with this. Each one of us has some thing that we're naturally inclined to, use your strengths.

Take the Easy Road

Offer to pay for a service! Here are a list of common services that may be welcomed: house cleaning, seasonal yard work, repair/handy man, massage appointment, respite/babysitting care, meal service, dog walking, laundry service, vehicle repair, hang outdoor seasonal decorations (looking at you pesky Christmas lights), the list goes on.

"We all have 24 hours in our day" is literally true, however, each one of those hours carries a different weight. By taking away the light tasks (mindless, simple, available to others), the heavier tasks (medication management, therapies, navigating insurance, etc.) become lighter.

Who will you help out today?

Do good. Be well.


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