Our youngest son Ezra will turn 7 next month. He has survived juvenile myelomonocytic leukemia (JMML), chemo, a feeding tube, numerous surgeries, hundreds of blood tests and labs, food allergies, countless illnesses, hospitalizations, a rare disease called Noonan syndrome, and approximately 1.5 years of quarantine. Shelter-in-place, social distancing, and going to great lengths to keep him healthy are not new concepts for our family. We spent nearly a year housebound with Ezra after he was diagnosed with juvenile myelomonocytic leukemia (JMML) at 4 months old, and weeks and months at a time ever since he was diagnosed with Noonan syndrome (NS). NS is a multi-system disorder, and it’s made Ezra’s tiny body unpredictable when it comes to how he handles different illnesses. Most often, illness hits him much more severely than it would a typically healthy child.
As many rare disease parents can attest, the pressure and weight of being solely responsible for keeping our children alive and well is very heavy. Add the threat of a widespread pandemic, and the magnitude is so much greater, even though many of us are well prepared for this way of life. Over the past couple weeks since COVID-19 became a real threat in our area, I have ping-ponged between an “I was made for this! Every experience in Ezra’s life has prepared me for this,” mentality, and a “How have I worked so tirelessly to keep Ezra alive for 7 years, only to be threatened now by a novel virus that so many around me don’t seem to be taking very seriously? We’re doomed,” mentality. It’s overwhelming!
So now, more than ever, I think it’s important that we share the things that are helping us manage these new challenges with as much positivity and hope as we can. Over the past nearly 7 years as Ezra’s mom, and gathering from my own experiences becoming a yoga teacher, these are some of the tools that help me deal with the pressure of keeping Ezra healthy:
- Pray or meditate. We are constantly being inundated with information from the media and everyone’s opinion about all of this right now. Prayer or meditation is a good time to put your phone on “do not disturb,” be still, and quiet the noise for a moment. (Insight Timer is an excellent free meditation resource)
- Body scan everyday: head to toes. Ask, how am I feeling? What is my body telling me? Is my heart racing? Is there tension in my shoulders? What emotions are manifesting physically in my body right now? What am I eating and drinking and how is it making me feel? Take note and look for patterns—becoming aware of how your body actually feels can help you distinguish or understand better the physical sensations in your body versus any negative/anxious thoughts you might be having.
- Practice yoga or your preferred form of exercise. The amazing thing about this unique moment in history is that there are so many online resources available to us as studios and gyms have shifted to livestream classes. Movement releases endorphins and can help shift our entire outlook. Willamette Valley Power Yoga, the studio where I teach, is currently offering online classes and I’d love for you to join me!
- Breathe in fresh air. Depending on the restrictions in your area, practice social distancing and go for a walk outside to breathe. If you have a partner or helper, take turns on some solo walks, even if it’s just once around the block. If the weather is bad, etc, no matter what, step out (or open a window, even) every single day and breathe some fresh air into your lungs—it’s life-giving and a natural mood booster.
- Distract yourself with laughter. Find one thing everyday that’s funny or an emotional release. An outrageous meme, a dance party/concert in the kitchen, a ridiculous Netflix show. Allow yourself to laugh or escape in a healthy way, even for a moment, even when things are uncertain or scary (especially when they’re uncertain or scary)!
- Most importantly, reach out and talk to someone. Your friends, your rare disease peers, this Global Genes community—reach out to someone who “gets it” and express your feelings. Even as well versed as we are in caring for our kids, this is a new challenge for everyone. We need to help lean on and lift up each other, now, more than ever.
This piece is a guest post contributed by Elisabeth Parker. Elisabeth is the mother of Ezra Parker, who has a RASopathy called Noonan syndrome. She is a volunteer board member for RASopathies Network, Baptiste yoga teacher, and spends her free time advocating and encouraging other rare disease families on Instagram.