Tuesday, November 23, 2021

Out of the Woods

Tim tested positive a week after I did. This virus works very strangely. The girls headed back to school. Tim just got out of his quarantine this past Saturday. I don’t think he was as bad as I was. 

Both our coughs are gone, but lasted until about Day 14 after first symptoms. I can taste, but I can tell it’s not 100%. Same with my sense of smell. It’s there, but not as strong as it was. I hope it all bounces back eventually 😕

The girls are getting their 1st vaccine dose today. Multiple doctors have said to proceed. Tim and I will be getting boosted with Moderna here shortly too. We’re going to stagger our boosters in case we’re down for a day. 

Cases are rising everywhere, in case anyone hadn’t noticed. (This is just our county)



Tuesday, November 9, 2021

COVID Rd.2 Update

 So we decided to test the girls on Saturday after we got free tests dropped off by our local library (a very nice perk). I think Hannah was acting a bit off Saturday which prompted us. 

Both girls’ tests were positive. Which I think we were glad - ? It immediately nixed my isolation. If the girls are I were positive, Tim had been around us for DAYS by then and had already been exposed plenty. So at least we could congregate together. 



Hannah had a fever for maybe a day if not less. It peaked at 100.2˚. Nora’s only symptoms looking back at the week was a sore throat and aches back on Monday the 1st. 

I’m on Day 10 of having symptoms/side effects. My cough has not subsided and I know some people have it for a while after the virus leaves. I still cannot taste or smell. I’m trying to read up and some folks use mouthwash daily, others just eat intense-flavored foods every day to train their tastebuds. Today I had brown rice, a fried egg, and threw pico de gallo on top with lots of raw onion and some chili lime salt. It hit hard; my sinuses were burning. Then I ate a small amount of mac-n-cheese and I swear I could taste it a bit better. 

I can taste salty, sweet, and bitter profiles, but not the detailed flavor. It’s hard to explain. 


My quarantine ends Thursday. But the girls will end Friday, so Thursday we have to both work from home and manage their schoolwork. 

Tim had to move two days of PTO and take 3 days unpaid leave to manage the girls while I still worked from home. It’s a lot to move around for a working family who gets hit. 

As disruptive as this has all been and as hard as it hit me, I’m glad we’re all okay and now we’ll have a great gift for the holiday season: immunity 🥴

Friday, November 5, 2021

I Have COVID. Again.

 I'm kind of out of words anymore about this virus. 

Yes, I’m vaccinated (J&J), and yes, supposedly I had COVID already in July. Tim supposedly did too. Are two false positives common? Did we falsely cancel half our July for nothing? Sigh. 

I started feeling crummy on Halloween; just fatigue, achey. I took some DayQuil and gained some energy for Trick or Treating. 

Monday I didn’t feel awful, worked out that morning, went to work (!) and mustered through the day with some chest congestion. 

Tuesday woke up and worked out again, felt okay. I was home with the girls for their day off (Election Day). I was able to keep up with them for the 1st half of the day, but once mid-day hit, I went downhill. Aches, chills, sneezing. I spent the 2nd half of the day on the couch under a blanket. 

Wednesday I had a sore throat and I worked from home, not feeling super again. As the day went on, I realized I couldn't smell or taste anything. I stuck my nose in a jar of garlic - nothing. No way - I already had this damn virus, no way could I be positive again. My Mom had given us some free at-home rapid tests and I took one - it was positive. @$%&*


I talked to a county nurse again. She said if I isolated from the family and the girls tested negative on Day 5 (Monday) after their last exposure from me, they could return to school on their Day 8 - which would be Nov 11th. That’s my release date, too. If I stay exposed to the girls, they wouldn’t return to school until Nov 18th - two days of school until they are off for a stupidly long Thanksgiving Break until Tuesday Nov 30th. We want our girls in school, so we’re making a tough decision to isolate me in our bedroom.

Tim of course tested negative because nothing makes sense anymore. He does not have to quarantine because he’s vaccinated, but needs to wear a mask if he went out. 

The girls are fine. Hannah had a cold last week which makes me wonder if she brought it home again - I swear that kid has been exposed more than anyone I know and nothing has happened - I truly wonder if she’s a carrier or immune. 

Cases in Nora’s school have ramped up again after Halloween - the same thing happened last year. The girl next door is positive and a partner at my office tested positive the same afternoon I did. She had travelled last Friday and had been out to dinner Monday for her birthday.

I had gone to a brewery on Friday - my first public eatery since early July. Maybe I caught it there? 

I’m just frustrated. We do most everything we’re supposed to and it’s been a hard year of pivoting with this virus. Meanwhile, I know others who don’t play by the rules and they just skip around with no consequences. I can’t help but stew.

-------

I’m taking Aspirin every day to thin out my blood, moving as much as I’m able to keep my lungs open. A friend dropped off a pulse ox and thankfully my O2 is 100%. I tried to sleep on my stomach last night - that wasn't happening. I don’t know how I did that pre-children. 

I have no hunger or thirst cues. You have no idea how important those two senses are until you lose them. I only eat and drink b.c I know I have to. The feeling of my stomach tells me when I’m hungry. I really, really hope those senses come back in a timely manner. It was one thing that really freaked me out and now it’s affecting me. 

I don’t ever use sriracha - it made my nose run, but I didn’t taste its heat.

My temporary office + entertainment system.


Tim and the girls FaceTime and we text.  

It’s going to be a long quarantine. Again.


Wednesday, November 3, 2021

October Fun

 Had a good October! 

Hannah lost both front teeth! #3 fell out after tripping and falling at school - whoops! And #4 came out on its own here at home - we actually collected it! 



We finally got a small swingset after years of me saying we had no where to put it. Tim found a small space in a side part of our yard that wasn’t being used. And a modest two-swing set. Hannah is in heaven! 




We had a great time at our local farm. We were treated to a hayride by our local Down syndrome Association. 






Halloween was decent - Nora went out with her school friends - it was a large group of us : ) 




Hannah only made a handful of houses - too many dogs were walking around and barking and yipping so Hannah was triggered and wouldn’t go out : ( 

Tuesday, September 21, 2021

This & That August / September

 

My first in-person race in two years!
Only a 7K, but hot and struggled after not running for about 4 months - !

Nora learning electric bass.

Someone found some lipstick!

Driveway art!

Foam Rolling

My friend, Maren and I! Friends since 1999!


Just like college when I was the 3rd wheel then too!

Tim went to Colorado for a quick 3-day trip with a friend to visit a third friend. Meanwhile, I wanted to attend a music festival in Lexington - Railbird - to see my favorite band, My Morning Jacket. However it was 90 degrees, half the staff failed their COVID tests, and the festival was not equipped with enough water bottle stations. We probably spent most of our time waiting in lines to just get water - it was bad. I guess the day was worth it to see my favorite band, and the festival organizers sure learned a lot too! WATER, WATER, WATER.

Hannah Turns 7!

 Thankfully Hannah’s birthday is late summer so we were able to manage an outdoor celebration with some good friends. And we may have even invited our adult friends so we could enjoy ourselves equally!

We have a local ice cream truck, Sticky Fingers, that you can book to arrive and you pay for all the kids’ (and adults’) ice cream via Venmo! So easy and fun!





Beginning of School Snags: Part 2

 The next hurdles of the start of the school year was the COVID virus and the school setting. While I was happy the school implemented masking for K-6, masks are not worn at lunch and optional in the hallways and recess. 

Additionally, through word of mouth I heard parents were sending sick kids into school or sending kids into school when someone in the household tested positive. What is wrong with people?

The masks were not implemented until after Open House. I was disappointed we were one of maybe three families masking in the building. Three days after the start of school, Hannah’s teacher tested positive. Then her aide was out sick with flu symptoms, not COVID. Then within the next week, approximately FOUR kids in her class tested positive too. 

We got two courtesy calls that Hannah was near a classmate who tested positive, but in the length of time deemed to quarantine. Sigh. 

The start of school was super inconsistent. 

Ultimately just after 10 days of school, Hannah’s class went remote for the week before Labor Day. It was kind of stressful, but I’m thankful Tim and I can work from home. However, I’ve stressed this before - kids with disabilities have to be in the classroom. 

Tim and I are parents, not teachers. Hannah does not listen to us in the same way and it was a struggle to get her work done. We had to spread it across the day. She did not have the attention or focus for the Zoom calls. I focused on one day at a time! 

Now we’re a month in an it seems the positive cases are slowing down for now and glad for some more consistency. 



Tuesday, September 7, 2021

Beginning of School Snags: Part 1

We finally made it - first day of school for 2021-2022; 4th and 1st grade. 

We tried to keep teaching Hannah how to wear her mask, and it’s been going okay. I think peer modeling is our best bet as well as positive reenforcement. 

We hit a snag on Day 1. We played with what to do for transport to and from school. We thought about having Tim take the girls to and from since he’s still working from home. But Nora said she wanted to do Extended Day to see friends. 

Well, when I went to pick the girls up on Day 1, the caretakers (just every day volunteers) said the girls had a good day. One woman said she remembered Hannah from preschool. Well, as soon as we got outside, Nora started bawling. She claimed everyone was treating Hannah horribly. 

Nora managed to get out that the caregivers were treating Hannah like “any other kid.” Well, Nora, that’s what we want! But she said the adults were grabbing Hannah by the arm to direct her, “yelling” at Hannah to get off the stage. The kids sit at tables by grade and Hannah wanted to sit by her sister, so they constantly had to pick Hannah up and take her back to the 1st grade table. 

Nora said the other kids would make Hannah parrot words like “poop.” 

We realized Nora has hit a crossroads; she’s in school with her sister now with a new set of kids who haven’t met Hannah, or maybe anyone with Down syndrome. Nora was carrying the stress of people who didn’t know how to treat her and it really shook her. 

We weren’t prepared for this and it isn’t a situation to tell a child to “tough it out.” We don’t want Nora feeling the weight of having to protect her sister and be consistently stressed out - because Nora is not a chill person. We decided to pivot immediately to Parent Pickup/Drop off. Nora is much happier and now I can be more strategic about these situation and slowly coach Nora. 

I’m not mad at anyone... I think Nora was overwhelmed and most everyone in that room doesn’t know how to navigate/treat behaviors of those with DS. 

Cincinnati Children’s has a class for siblings of disability. I spoke with another DS Mom about this and it really helped her older daughter in this exact situation. Now I just need to coax Nora to attend. 

I immediately sent an “About Me” to the specials teachers (art, music, PE) as well as printed one out for Hannah’s classmates. A Mom reached out to me not even a day later to say thank you. 

Hannah is the only child with DS at her elementary, I’m not sure if there has been a student with DS in recent years. Education takes time...






Shower update - Finally!

 I have been waiting seven years for this... our primary shower is a nice little space with a skylight. However in the 80s, tile was way too popular. It may look interesting in a shower, but functionally it is a horrible choice. Do you know how much mold and mildew comes along with a shower filled with 1" tiles? Too much to keep up with. 

With the help of Tim’s firefighter brother-in-law who does tile on the side, we slowly made our way to a better shower. Multiple quarantines and vacations and a firefighting schedule drew it out, but we made it! Very happy with the results Big tiles = less grout : ) 











Thursday, August 19, 2021

Speaking Up for Masks

 After our never-ending COVID quarantine experience, I started to think how this would affect our school year. Back when numbers were low, most officials agreed masks could come off or be optional, including schools. Of course people always forget about the kids and the fact that they don’t have the option to be vaccinated yet. 

Our district announced prematurely that masks would be optional for school. Well, the Delta variant doesn’t care what you think and has come back full force and has a good amount of us worried. 

We still don’t know if our girls had COVID. Their antibody tests came back negative but my PCP told me those tests are not accurate at all. This whole pandemic is full of uncertainty. 

A group of parents organized ourselves to speak up for a masking mandate at our elementary schools (re: unvaccinated) at an emergency School Board meeting. 

And yes, kids may be fine if they contract the virus. But my child can’t wear a mask well due to her disabilities and features. So I’m being asked to toss my child into the deep end where other families don’t want to mask at school. No mask = quarantine. Mask = no quarantine. You see where I’m going? If Hannah is constantly exposed at school, her education is fractured and she’s already delayed as is. Not to mention the disruption quarantining is for working parents. 

We’ve seen countless states open up schools only to immediately mask up or go virtual after a week or two because so many students are infected.

So I got my speech ready and presented my case to our School Board. The meeting went on for four hours. It was standing room only and heated - mainly from parents who didn’t want their kids masked. 



Looking back now, it’s interesting how much of us “Pro Masking” parents used the words “we/us/our” and the “Parent Choice” parents used the words “me/my/I.” 

Our School Board voted 4-1 to mandate masks in the elementary schools. The 1 man who voted “No” is trying to save his voter base and spot on the Board for re-election  :: eyeball ::

The Board will revisit the subject every month to reassess. 

Even though our group “won,” we didn’t feel good - the amount of hate and vitriol from parents is absurd. One Board member asked for a police escort to her car, Board members have had threats against them and their families. Over wanting to keep kids in the classroom.

Advocating is hard work. 



COVID Ruins Everything

We went into this summer optimistic and feeling a little safer. Tim and I are fully vaccinated, infections had gone down. We signed the girls up for Summer Camp - finally some socializing! I was unhappy about the administration taking away any mask mandate, but we were willing to take the risk with summer camp since numbers were down. 

We had started hearing about the Delta variant in July and on a Wednesday, July 14th, Hannah had a really bad cold; stuffy, minor cough, a little snot. A typical Hannah cold. Tim also started getting a sore throat. When the weekend hit, Nora had a barky cough that moved to a wet cough. On Monday I woke up with a raging sore throat. Tim went into what seemed like a normal sinus infection for him. I was sniffly and congested. Then on Thursday, July 22nd I felt like I was hit by a bus of fatigue. I couldn't sit up. This fatigue was like nothing I’d had before and came out of the blue. I was thankfully WFH and thought “Geez, maybe I should get a COVID test?”

I found an Urgent Care with rapid tests. After waiting for 15 minutes after my swab, the doctor on call stood in the corner of the room and immediately asked if I was vaccinated. “Yes?” Her face fell and she tossed her papers in the air with a look of defeat: “I don’t know what to do anymore.” My test was positive. I left in shock then anger and called Tim and my Mom sobbing and angry. We have been doing everything to be a team player this entire pandemic and now we were infected. 

Tim tested hours after me and was also positive - all his symptoms had resided. 

We were quarantined for 10 days after our first symptoms. The next day we got the girls both rapid and PCR tests - both came back negative which baffled us. Was their viral load less b.c they were younger? Had we waited too long to test them? 

Unfortunately, because they tested negative, the girls’ quarantine of 10 days didn’t start until mine was over. The county health dept assumes that they can still catch it from me on my last day of quarantine. Our poor girls were home for 17 days. 



We had to cancel a large friend’s camping trip, a concert night, I had to cancel a Mom’s Night Out. It truly ruined the end of our summer. 

They went back to their summer camp on Monday August 9th. On Tuesday Aug 10th I got a call from Summer Camp that Hannah’s aide had tested positive and to come pick her up and quarantine her for another 10 days. 

I lost my shit. I screamed and cried and was inconsolable for an hour. My child needs socialization and it keeps getting yanked from her. Is this how school was going to go if she can’t wear a mask well? Just a constant stream of exposure quarantines that completely disrupt her education and our work days? (This will be a story for another time)

Hannah showed no signs and thankfully tested negative - this got her out of quarantine in 7 days instead of 10 and she was able to start on the 1st day of school. 

Hannah has been in quarantine for 24 days in the past month. We are tired of being home.



Tuesday, July 13, 2021

Annual Cardiology Appt

 Hannah had her annual checkup - she’s in good shape, so no changes for a year. However, she hasn’t gained any weight in a year 😬 Story of her life... So I need to figure out how to get her to eat more, or more calories.

We also did a 6-month follow up lab work from her low WBC back in fall. I saw her results and they are still low, even with some immunity exposure at summer camp - unless that takes a bit more time. We should be following up with Hematology this fall, so we’ll see if there are any steps to take.





Monday, July 12, 2021

An Unmet Need

Hi friends & family. I’d like to plant a seed.
AN UNMET NEED!

I have a good friend who has to pull her son from our summer camp because of his “bad” behavior. Here’s the thing. Kids with Down syndrome can act out when they aren’t being stimulated in a directed way, or if there isn’t enough structure. Some kids with DS want to play with others and when the other kids ignore, kids with DS can hit and push. My friend is frustrated because our summer camp doesn’t have educated employees who know how to maneuver this. Instead, kids with DS tend to be pushed out or never let into camps in the first place.

I know families who were straight up told their children with DS were a liability. I have countless Moms tell me this is an unmet need and no solutions. Every family seems to have a horrible story of exclusion from childcare, me included

It makes my heart ache how every year I see handfuls of families ask where they can take their child with disabilities for summer care for working parents. We are turned away because our kids aren’t potty trained. We are turned away because their behavior is “bad.” Spoiler alert: it’s not bad behavior, it’s an environment that isn’t quite structured enough or staff who aren’t educated on disabilities. We are turned away because “we just don’t have the staff to have an extra eye on your child.”

I’m tired of feeling sad and helpless for our kids. These aren’t special needs - these are human needs. My friends and I dream of a day where our kids aren’t turned away. We dream of organizations who have one-on-one attention for our kids. Maybe the staff gets college credit? Maybe the organization is funded by the state? Can our county train organizations and employees? I don’t know the answer, but I hope to start making steps towards truer inclusive childcare.

Thanks for coming to my TED Talk. I hope this seed can grow.


Wednesday, June 9, 2021

Filling Our Cups

 ...literally with beer and with friend time!

One of our closest friends works at Highbrain brewery in Silverton, OH. Great beers, food, and a sustainable business goal. They had a 2-year anniversary celebration this past weekend with popsicles, food, music, and games. We met up with a core group of friends and it was so nice to be together as a whole group. 






The following day, the same group got together again for one of the kids’ 9th birthday. The weather was drizzly at first then opened up. We spent five hours there - which was lovely since the kids were occupied with water activities and the adults could focus on catching up 💗




Recharging at Grammy & Grandpa’s

 We had a week gap between the end of school and the beginning of summer camp. Our school holds summer camp - 6:30am-6:30pm - which is so wonderful for working families. So I took the week off and we went to my parents for a couple days. The first day was beautiful - we went to a local Nature Center where they had animals in rehabilitation. Until birds starting cawing and Hannah saw the animals and noted right out of there. Grammy sat with Hannah until we enjoyed all the animals; coyote, owls, crows, fox, hawks and even a bald eagle! 











The Center was cute and gave something for the girls to explore. Then we hit Fulton Farms in Troy as well - it’s probably been decades since I’d been there - adorable market inside the barn.

Day 2 was super rainy and slow. We did hit my Mom’s favorite primitive decor store which was closing (retirement), the local five-and-dime where the girls picked out some toys, and then my Mom’s thrift store where Nora hit the jackpot! 

Making lemon scones w Grammy


Nora’s dime-store find

Nora’s sweet taco-cat find