All alone… and finally included!

Friends have checked in on how we’re doing during this time of Coronavirus self-isolation, assuming that with a medically fragile child we must be experiencing it worse than most. And each time I struggle to come up with an appropriate answer. Because now that we are all at home, the answer is that we are… Hmm… We are healthy. We are cozy at home. We are safe. A little stressed, but that’s a constant here… But there was something else that I couldn’t put my finger on until recently: 

We are included! For the first time ever, we are doing exactly what is right for our family in a crisis, but we didn’t have to ask for special permission because everyone is doing the same thing! 

Being a “rare” family, we are often left out. Sienna doesn’t participate in sports or dance classes for several reasons: she can’t lift her arms above shoulder level, and injuries or illnesses can cause F.O.P. flare-ups (painful swellings that can result in additional permanent loss of joint mobility). She does adaptive PE separately from her class. She has made some nice friends at school, but typically doesn’t see them outside of school.

And when I see other parents at school events, I smile and wave hello. But they are usually busy with each other – they’ve bonded over their shared experiences with their children’s activities. And our everyday concerns are usually so different from those of “regular” families. We get nervous about flu season every year. We stock up on Clorox wipes every year. We avoid crowds and travel as little as possible, all year. We wash our hands raw, all year long. Sienna’s school nurse has us on speed dial, and we keep Sienna home when flu levels get high. Last year’s measles outbreak a few towns away? Terrifying. We didn’t visit a crowded location or grocery store for months, and had to postpone our travel. We are used to hunkering down. We have our online F.O.P. support group of families who are in it with us, of course, but in our local community we were always quite alone.

But then on March 13, Sienna’s school and my office went remote. All of a sudden, everyone was taking public health seriously. And for good reason, Covid-19 is unifyingly terrifying, especially as we see under-resourced hospitals and more people without pre-existing conditions getting hit hard. 

As “regular” families are processing this difficult time and coming together – for the first time, we can fully participate. Sharing tips to avoid germs? I’m in! Avoiding crowds? That’s my life’s mission! Looking for tips on how to open a door without touching the handle? Sit down, I can teach a PhD-level course on that. Need groceries delivered? Get out your pens, I’ve got a list! Sharing grocery decontamination tips? I’ve learned a few new ones this year! Friends are having video chats. All office jobs are working from home (My work team is killing it, I must say! We’re busier than ever, but getting it all done, and even had a video happy hour last week. My boss has been an inspiring leader, while maintaining warmth, compassion and humor. And my teammates are sharing ideas for how to survive working with children in the house). Friends everywhere are sharing how they are hunkering down on social media, and drawing pictures to hang in their windows. We’re not skipping any plans because there are no plans! 
Of course, we are still scared about many things: We read the news and panic at the numbers of confirmed cases and deaths. We are saddened by the understaffed and under-resourced hospitals. We are proud of, but terrified for, several of our dear friends who are putting themselves at risk on the front lines in the ERs. And we have additional F.O.P. specific concerns: Our community is at high risk of complications from the coronavirus, and also at high risk of having their care deprioritized in an under-resourced situation. And we fear that the pediatric clinical trials that we have been desperately hoping and praying for may be delayed because they need hospital sites to run them. Beyond that, many of the IFOPA’s main fundraisers are in-person events that have been canceled or delayed, and a global pandemic is not the right time to heavily fundraise for non-pandemic causes, so this year’s budget will likely take a hit.

This is a time of fear and uncertainty for everyone. And on behalf of the rare disease community, I say “Welcome. We live here all the time.” We’ve lived in a world for 8 years where someone else’s cough could result in Sienna never being able to raise her arm again. Now, someone else’s cough could wipe out a whole family. The stakes are higher, but some of the principles are the same. And now we’re all here, together. Here are a few tips, from someone who lives here full time:

Remember that you don’t live here, in this land of fear of uncertainty, you are just passing through. Your stay will last a few weeks or months, and then you can get back to your regular lives. Use this time wisely. (Unless you have toddler and you’ve lost childcare as part of this new normal. In that case, just hang on for dear life. Throw in a frozen pizza and a movie and call it a parenting win so that you can crank out some work from home.) 

Take some time to grieve. Your life has been turned on its head. Sports, activities, and concerts are cancelled. Plans for spring parties, weddings, prom, graduation ceremonies and reunions, all canceled. When Sienna was diagnosed with F.O.P., our lives were turned upside down. We had to change everything we knew about how we were raising her, and grieved the future we had been planning for her. Her new future is turning out pretty great, it is just very different from what we had expected. Your spring will turn out ok too. Figure out how to make some of those missed events happen virtually, and reschedule for next year. This year I’m a little disappointed that my 20th college reunion and 15th business school reunions are both canceled, but I’m sure we will gather and celebrate another year.

Focus on what you can control If you are healthy at home, you are winning! Maybe you didn’t achieve your work/ parenting/ household goals for the day because of things beyond your control. But you stayed at home? Guess what, you’re winning! Celebrate the small wins.Plan a kitchen dance party. Schedule in time to bake a cake. For the first time since Sienna’s diagnosis, there are no risk factors beyond our control because we are all at home, and it’s been an amazing reduction in stress.

Look for the silver linings For us, Sienna is happier than ever right now. Her dreaded state tests have been canceled. Her feared March bloodwork has been indefinitely postponed. She can go to “school” in her pajamas and snack anytime she wants. Today she had tacos at 9am!  And as a result she has finally gained back 3 of the 5 pounds she lost in the fall when she started her new medication. She has video chatted with her teacher, her school nurse, and we are scheduling one with her aide. These woman are amazing and we are so thankful that they care so much about Sienna – we miss them and love seeing them live! I love that I can hear Sienna and her brother playing (and fighting sometimes…) while I am working. I love that I can come upstairs for lunch and kiss Alex goodnight before his nap.

Plan some joyful activities. Don’t expect to become teacher of the year and Martha Stewart all at once, but do a few things that bring your family joy each day. We had Halloween (with real candy) at 10am on a Tuesday. We’ve colored rainbows and Easter eggs to hang in our windows. We’ve baked brownies (from a mix…but we baked!). Sienna has done science experiments and built lego mansions. Alex has gone rainy day puddle jumping. And we’ve all run around in the yard and invented a game called “tennis” (spoiler alert: it’s not tennis as you know it.) 

Forgive imperfections It’s ok if the rest of the day is screen time. Try to direct them to educational sites, but it’s not the end of the world if not. This weekend Sienna and I binge-watched Disney’s “Liv and Maddie” during Alex’s naps and it was surprisingly good! If you yelled at your homeschool students (as I did today, for loud chewing and throwing a balloon around while I was trying to think through a work email), apologize and move on. 

Your life will get back to normal in a few weeks – but take a souvenir with you when you leave. Remember how scared and uncertain you feel today? Don’t forget that some of us live in this world all the time. So wash your hands this thoroughly, all the time. Stay home when you’re sick, forever. And don’t send kids to school when they’re sick. Staying home for a day or two might be inconvenient for your family, but consider the consequences of the spread of illness for other families. (I know that this coronavirus spreads before people are symptomatic so it doesn’t work for this one, but families like mine are also worried about the traditional flu). And I hope employers realize how many jobs can be done effectively through remote work, opening up new careers for people with disabilities.

I’d also advocate for eliminating handshakes forever. ‘Nice to meet you! Let’s exchange germs!’ So gross. Let’s end that.

And remember that while you plan your joyful return into the world, that moment represents the greatest fear for families like mine. The virus will definitely still be circulating when everything opens up again. How will we safely re-enter the world? If Sienna gets the virus she is already at a higher risk for pneumonia, and she is currently taking medication with immunosuppresant qualities. When you plan your social non-distancing parties, maybe video conference us in? 🙂 I am excited to get back to my office when it re-opens, and to see the faces for all of the voices I’ve been working with these past few weeks. But you can bet my germaphobia will be at an all-time high. Please don’t judge me.

In the meantime, we will treasure this time of being safe in our nest, alone and fully included. For once, we are actually better off than most other families. We have office jobs that can go remote. We also have the support of an amazing au pair, who is quarantined in with us (for as long as she’s willing to put up with our crazy family!). She is the glue holding our family together – keeping Alex entertained and learning, and helping tire him out everyday so that we can still work and help keep Sienna’s schoolwork on track. We know how lucky we are since most families don’t have any childcare help at home, let alone someone as amazing as Samy! It’s also really nice to have another adult friend in the house to talk to, and to learn about what is going on with her family and friends at home in Germany. We know it must be hard to be away from family and friends during this strange time in the world, so we hope that we are filling in as a second family. We can’t thank you enough, Samy, for sticking with us!

I think Sienna sums it all up best: her 10th birthday is coming up and she has declared that “This is going to be the best birthday ever!” When I asked why, she said “Because we’re quarantined at home!”

Our Samy! ❤
And some recent highlights!

3 thoughts on “All alone… and finally included!

  1. Thinking of you and your family and keeping you in my prayers! I’m a friend of your sister and have met you all a couple of times!

    Sienna is a beautiful girl and she has great parents (and sibling!) . I can feel the love you all share!

    Stay safe!

  2. Pingback: Learn from the Experts – Our SEPN1 Life

  3. Amazing journey you all have gone through. We too received a FOP diagnosis in the family not too long ago and I did not deal with is with as much dignity as you have. I’ve followed your story since our own diagnosis a few years ago. I’m ashamed to say that I did not handle things as well as you have. I hope your journey continues on smoothly and fingers crossed for further therapeutic options for Sienna and my daughter too.

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