Small Ears

Having kids at home means that there are small ears everywhere. They are hearing your discussions and absorbing both things you say and your general mood. If you haven't, check in with your kids. They might be worrying more than you think. At least, that's what happening in our household:

Night before last, as Toe was getting ready for bed, I noticed his hands were red and raw. This is a boy who takes hand washing VERY seriously. He nags me when I don't wash my hands long enough (and I usually remind him that I washed my hands five minutes ago and will do so again in the next five minutes) and is completely outraged by the non-hand washing that regularly happens among his middle school peers. I had him slather up with lotion and go to bed.

And then I woke up in the night with the realization: those red, raw hands mean he is washing even more than normal (which, in our case, is a lot). I then thought about Toe reading over my shoulder that night as I scrolled through Facebook. He has been within earshot as I have discussed the news with J or people on the phone. Like many of you, I've been leaning on the news cycle pretty heavily. I have been reading the news, sharing articles with J, discussing the latest statistics or new information multiple times a day. I have been a little overwhelmed by the numbers, by the changing landscape, but I have been afraid to take a break from the news in fear of missing some crucial piece of information.

Meanwhile, as a family, our self talk has been positive. We remind ourselves that as a family with CF, this is what we do. Toe says, "Social distancing is nothing, I have been isolated in a hospital room for two weeks with a PICC line and a blood clot!" He is chirpy and mostly joyful.

But the more I thought about it in the night, I realized that I am seeing little signs of his anxiety: extra hand washing, surprising grumpy moments, grabbing and hugging me much more than normal... Toe is twelve. I need to remember that although he is very mature, with a wide range of experience, he is still a kid.

So yesterday morning we had a little talk. I asked him how he was REALLY feeling. He said he's scared and missing his friends. I told him that it is ok to be scared, and important to share those feelings (as long as he's not taking it out on others). I told him that keeping these feelings in means that they grow and fester, kind of like leftovers in his lunch box. When he brings home his lunch box after school, and we empty out the food, we see the leftover food and get rid of it. If we don't empty out the lunch box, though, the remaining food inside rots. You still have to deal with it eventually and by then, everything is moldy and rotten and gross. It's important to allow and acknowledge the big emotions we are feeling to let them pass through, rather than build and fester.

I realized this might be good advice for me as well...

I am working to check the news and Facebook less frequently and J and I are sharing information in private moments. I don't want to shelter Toe completely, but he does not need to live the news cycle with me. Toe is home for the foreseeable future and I need to monitor my conversations in his presence, and also find private time to talk freely and experience my own emotions.

CF, COVID 19

With Toe's cystic fibrosis, many of the practices we are being asked to do as a nation for COVID 19 are second nature to our family (and most families with CF). Any illness has the potential to turn into a respiratory exacerbation and potentially pneumonia in my son's lungs. I have seen kids with CF go from being perfectly healthy to life threateningly sick in a matter of days or weeks. This is something CF families live with daily. COVID 19 does the same thing but for different reasons (CF - thick, sticky mucus; COVID 19- damage to the lung lining).

We have lived with uncertainty for 12 years. Plans we make for tomorrow, a week, or a month from now are understood to be tentative. CF reminds me on a regular basis to appreciate the healthy days, to take one day at a time, one decision at a time. We make a good faith effort, wash hands, do treatments, avoid germs, and work to let the rest go. This is an ongoing practice.  If there is one thing I can share with the general population during this time, it is that it's ok to live with uncertainty. Narrow your focus. Appreciate each moment.

The game has not changed for us. However, the stakes are higher. We are taking social distancing very seriously and the likelihood is that once other people return to normal lives, we will remain sequestered. We are following the CF Foundation recommendations and recommendations from our local CF clinic. I'm not really trying to plan more than a few days ahead.

For everyone, please remember the basics:
Regular and thorough hand washing and/or sanitizing - check
Avoiding germs - check
Avoiding people with coughs or other symptoms - check
Coughing into your arm - check
Keep a 6 foot distance from anyone who doesn't live with you-check
Shelter in place if you or portions of the population are sick - check

Some next-level habits we have created that might help:
*Take these with a grain of salt and if authorities recommend otherwise, follow their recommendations.

1.  Wash or hand sanitize during transitions: Getting into your car after the grocery store? Hand sanitize. Walking into the house? Wash your hands. Shifting from computer work to making dinner or a snack? Wash your hands! If you associate hand washing with a trigger (transition) it will be easier to remember to do it. (As a side note, my hands suffer from the tremendous amount of hand washing I do each day. I combat this with a really good hand lotion and sometimes gloves before bedtime. Every night.)
2. Consider changing your clothes after being in public: Even during normal times, Toe changes clothes and/or showers after school EVERY DAY. We have been changing clothes and showering after outings to the grocery store or any place where we encounter people.
3. Sanitize high traffic areas daily: I'm thinking especially of door handles, light switches, computer keyboards, phones and tablets.
4. Change hand towels daily 
5. Try a nasal rinse: We use NeilMed sinus rinse because of our allergies, but I have found that when we started using it, we became sick less often. I think flushing the nasal passages with salt water can't be a bad thing...
6. Quarantine packages and mail - J waits until the next day to empty the mail box and when a package arrives, we put it on the front porch and wash our hands. The package sits for 24 hours before we open it. I know other moms of kids with CF who are wiping down their mail and packages with bleach. We're not there yet, but I understand it. 

These measures may seem extreme, but they have worked for us. We still get sick, but  not as regularly as we did before we instigated these practices.

We are in for a roller coaster ride. All we can do is make a good faith effort and hang on. It took me years to put together these practices. I hope you see something that helps. If you're doing all of this, great job. KEEP IT UP!

Tech Rocks

Toe plays a new game online with friends

As a child of the 80's I can never quite get over my awe of technology today. I am the person who oohs and aahhs every time I see X-Ray results in seconds instead of hours (for those of you young chickens, they used to take X-Rays on FILM and it had to be developed before you could get results).

I feel the same about FaceTime and Skype. I remember seeing an ad (15 years ago?) of a guy taking a meeting from his lounge chair on the beach. I thought this was hilarious. And impossible. And yet here we are. It certainly is making staying at home easier.

Toe has actually used this technology for virtual play dates for years. His cousin in Illinois keeps him company when he is sick or in the hospital. He plays Minecraft with friends during breathing treatments. Because of Toe's CF, we become sequestered a lot. Toe spends hours on FaceTime with his friends on a regular basis. We also have a few play dates, but especially in the winter, FaceTime is  life saver. I am in awe of the technology and SO grateful that we don't have to pay long distance rates to do so (For those of you of a certain age, remember when we made our phone calls on evenings and Sundays and kept things short? So 20th century).

The DM discusses Features and Traits with our team's Monk

Recently we have dabbled in combining more traditional games with our technology. Toe has an ongoing D&D game that he DMs (serves as Dungeon Master) online with my sister and her daughter in Illinois.

Toe has spent his spring break virtually connecting with friends. Besides Minecraft and D&D, some other friends asked Toe to play the board game Cartographers with them. He has spent a couple of hours this afternoon with the friends and their family playing this board game. They have had to be creative about how to see the board or cards or to "switch maps," but overall, the thing has been an amazing success.

I know it's a shock, but he's a storyteller...

I am INCREDIBLY grateful for this technology and for people reaching out to us during these times. The likelihood is that Toe will be home through the end of the school year and these connections mean the world to us.

Recording Attack Initiatives

8 Reasons People Might Be Bulk Shopping for TP / Walking in Someone Else's Shoes

Photo from 2017... Masks are just a part of our life.

Yesterday I had to go to the doctor for a potential sinus/ear infection (it turned out to be a double ear infection). I called ahead and they told me to come in and that when I got to the front door, I should get a mask at the desk and wear a mask in to my appointment. I would be sent directly into a room instead of the general waiting room. My doctor is in the local hospital. I have heard that they are using enormous numbers of masks, so I decided to wear one from home.

Full disclosure: my kid has cystic fibrosis. We keep masks on hand, both kid and adult sizes, at all times. We wear the masks when we fly, when we take Toe to clinic appointments, if he has to go on field trips, and whenever we feel they are necessary. I buy them when we run out, but always keep them on hand. I don't have a huge stockpile.

I put on a mask before I left the house (I might have been contagious. I certainly am coughing) and wore it in to the hospital/doctor's office. I have read on FB comments, especially from nurses, about seeing people around in the grocery store wearing face masks and how they shouldn't be buying masks up when hospitals need them so desperately right now. I kind of felt guilty bringing my own, but I would have felt even more guilty if I had used one of theirs, knowing I had a small stash at home. People certainly gave me strange looks as I drove to the hospital and walked in...

This got me thinking about judgement and compassion. This is a time when it is easy to judge ourselves or others for their actions. Does that person at the grocery store need a mask? (She might be from a single-parent household and have a cold but need groceries). Should that person who is coughing be out on the streets? (The person might be recovering from a cold and taking a walk, working hard to avoid any contact with other people). What about the office worker who might have infected her whole office? (She had no idea and the moment she knew she had been exposed, she self quarantined. She feels terrible but had no idea she could be a carrier). 

And I began thinking about those people buying toilet paper. Maybe they had a reason? I began to think about reasons someone might need to stock up... Ok, the obvious one, fear of the unknown is probably most likely. But here are some other reasons people might have gone crazy for the TP.

1. They are shopping for multiple families
2.  They are shopping for themselves and their neighbors
3. They run a pre-school or are taking care of their friends' kids
4. They were buying for work and for home (there are still workplaces that are open)
5. They have IBS
6. They have 8 (or 10) kids 
7. They have a puppy?
8.  They are concerned there will be a run on Kleenex and are stocking up as a twofer.

Ok, the last two are weak, but you get the idea. There are always going to be some people who act in ignorance, who take this situation too seriously or not seriously enough... I am going to try to cut people (and myself) some slack. I don't know what other people I see on the street are going through. I would like to believe that we are all doing the best we can in these crazy times. I certainly believe in educating yourself and taking this situation seriously, but I am trying to open myself to these times with compassion and understanding. We are a world community and we are all trying to do our part.

That's it for today. Be well. Use common sense. Stay home if you can. THANK YOU  to all of the people still working to help all of the rest of us be able to social distance. EVERYONE, wash your hands.

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