FA and COVID19
I’ve had a lot of friends reaching out to me about the Coronavirus and how I’m surviving our #Coronacation.
As you likely know, I have Friedreichs Ataxia (FA). FA is a neuromuscular movement disease that progressively takes away my motor functions. My main symptoms are fatigue, loss of balance and coordination, poor dexterity and slow slurred speech.
I was diagnosed with FA 7 years ago. I am learning more about FA every single day, be it through the Friedreichs Ataxia Research Alliance, fellow FA patients, my doctors or just dealing with new symptoms that I wake up with some mornings.
One unfortunate part of FA that I have first-hand experience with is a compromised immune system. Now don’t midread that – I am NOT immunosuppressed – I do have an immune system. It is just not as strong as a non-FA patient. Example: if one of my kids gets a cold or pink eye from school, I will get it 8 out of 10 times. And when I get sick, I get sick HARD. My fatigue gets out of control and it takes me a long time to fight back.
Coronavirus terrifies me. I know I have posted memes and jokes about it, but that is a coping mechanism. Laughing about dark things brings light to my life – it makes it seem more manageable. But the reality is, I am so scared about how my body would react if I did get COVID-19.
You likely also know that I have two kiddos: 5 year old son, Brooks, and nearly 3 year old daughter, Collins. They are both preschool age. They were in class Mon/Wed/Fri. I used those days to do my physical therapy sessions, run errands, and catch up on things around the house. I know that I am so NOT the only parent who feels this way, but I really depended on that time.
Just like my toddlers – I thrive on routine. And just like all of you, we are trying to find a new routine… a new “normal” in the midst of this everchanging chaos.
I am so thankful for many things. I am thankful that we have plenty of food, supplies and entertainment to sustain “sheltering in place” for a while. I am thankful that Kyle has worked from home for the last 3 years, so we haven’t had to handle that adjustment. I am thankful that my clinical trial (#KendallRTA408) let me skip flying across the country to sit in a hospital this month and just mailed my next supply of drugs. I am thankful for friends and family who are sharing amazing “homeschool” ideas and resources. I am thankful for my parents who live in our neighborhood that are so helpful with my kids (and for the ADORABLE puppies they are fostering right now).
I am trying to see this season of life as a priority adjustment. Brooks is starting kindergarten next year, so I am trying to find joy in this and soak in the last of his preschool days.
Yes, we have missed a lot. Kyle qualified for Presidents Club through work, and we were supposed to go to Fiji earlier this month. rideATAXIA was postponed. The whole family is supposed to go to Mexico in May – who knows if that will happen. No church, no play dates, no fun dinners out, no date nights… We are suffering just like everyone else. It’s hard. It’s sad. It’s not ideal for anyone.
I know the financial burden this is placing on many. I know the industries that are being devastated by this shut down. I know the panic of trying to do the right things to keep your kids calm and thriving, while also trying to work and maintain the daily tasks. This isn’t easy for anyone. I fully sympathize.
I also know that while things feel sooo out of control, God is still in control. And He is still good. And He is still with us and He is still for us. I urge you to use this time to draw closer to Him. Ask Him your tough questions and seek His answers. Cast your burdens at His feet and give Him the chance to show up for you.
Draw closer to your family. How often do we complain about being “busy?” Use this time as a gift! Take naps on the couch with your kids. Take your dog on a long walk. Read your bible. Try a new at-home yoga routine. Try making that recipe you keep drooling over on Pinterest. Be ok with quiet. Find rest in the in-between moments. Call that friend you always think “Ah, I want to catch up with her but I have to ___ right now!”
And I would like to offer some advice: Stop hoarding hand sanitizer and antibacterial wipes. If you have 3 jumbo containers at home, don’t clear out the shelves at Target just because they happened to restock just before you got there. Leave some for people who might not have any. That way we ALL have a fighting chance to stay healthy and “flatten the curve.” This isn’t “The Walking Dead.”
Love God. Love people. Choose kindness. Choose to live in the light. Thanks for putting up with my rant. #CureFA