creature of habit

that's me. lehr can testify to the amount of things that i will accept and live with, simply because i always have. for example, we had an end-of-hose sprayer with ten different options of spray. all last year i only used two of the options because they were the only two that worked without significant leaking. even though I would have benefitted from having access to the other options, i never replaced it. maybe it was laziness, maybe cheapness, but mostly i just got used to it and accepted it for what 'normal' was. this is played out again and again in my life.

one might think that a great shift in 'normal' would be traumatic to a creature of habit like myself, but i find that most of the time, the idea of changing isn't something i welcome, but the actual change doesn't take long for me to adjust to. i think i don't resist once the change is inevitable because to do that would prolong the 'in limbo' part. that's the part where i feel a lack of ownership over the circumstances. like i'm driving someone else's car or using someone else's computer.

that's a long winded way to say that after a few days of being short on patience with my family (likely due to the underlying stress that we were (are??) feeling that first week with all of the uncertainty, all of us, even the creature of habit mom, have been able to find a lot of lemonade stands within this lemon farm.

big naked

you crack me up. daily, you crack me up.

for as long as i can remember, eliason kids have had to be reminded, 'no naked in the halls!'

you are no exception.

the other night as we were getting you ready for your bath, your shirt was off and you told me, "i'm little naked, mommy." i laughed and agreed. then, when your pants were off too, you grinned and said, "now i'm BIG naked."

Deja Vu

Strange times, eh?

I think we can all agree that there is at least some part of what is happening right now that is severely jarring to each and every one of us. While I definitely fall in the camp of 'sufficiently jarred', some of this feels a bit too familiar.

The hardest part of Ruby's cancer experience for me was the social distancing and isolation. Even as an introvert, there were many days when I found it very difficult to be confined to the AFLAC wing for a week, or confined to the whole hospital for a month, while we lived there. And the days when Ruby (meaning me too) was quarrantined to her hospital room only? Dark days.

When we were released to go home it was a little better because we were in our own familiar space, but we still had to wash our hands like crazy, limit external exposure to Ruby most of the time, and 'foam in and foam out' anytime we touched her, which was a lot because she was two years old! (By the way, I absolutely acknowledge that the fact that this was the hardest part is a HUGE blessing...it still blows me away that we were so fortunate that her health or health decline wasn't the hardest part.)

That was a hard seven months, but one thing that wasn't hard was knowing what to do when we were at home or at the hospital and something went 'wrong' with her health. Call the doctor and head straight to the hospital. No questions asked and I always felt confident that it was the best decision I could make if Ruby spiked a fever.

While this new or temporary 'normal' that we are living is difficult to navigate for those of us who love our free day-to-day lives, the other side of it is equally as hard: the health concerns. So many of us are tiptoeing around, sterilizing and distancing like crazy to protect our family members who are more prone, and to do our part to keep everyone safe so that we can all return to 'normal' as soon as possible. But underneath that task is the fear that it's not enough, and that the big bad virus will still get us.

My family, even Ruby, might be ok even if this thing shows up in my house, but my fears are about knowing what to do. Specifically what to do if one of us has symptoms requiring medical help? Last night I realized why that is such a big concern for me.

Every spring Ruby suffers from the seasonal allergies that plague so many of us when the yellow fog rolls in. For her it means some congestion, particularly in her chest, and random fevers. (I know..that doesn't make sense. I can't explain it, but she always spikes anywhere from 100-102ish fevers for short stints during allergy season. She gets sent home from school with 101, only to register 98 or 99 the rest of the day...sometimes she's otherwise fine, sometimes she's rundown. No rhyme or reason that we can find: it's baffling.)

That season just started in our neck of the woods, and last night Ruby kept getting out of her bed. Around 11, Lehr noticed she was warm, so he took her temp to verify: 102-degrees. We gave her some Tylenol and kept her in bed with us so we could monitor her through the night. Her breathing was really fast, so we decided to give her a nebulizer breathing treatment (she hasn't needed one since June!). Lehr measured her oxygen levels and they were fine, but the rapid breathing and heart rate was terrifying. Eventually it slowed down to a 'normal' speed, but while it was racing, I kept having a terrifying back-and-forth conversation in my head regarding calling the doctor. I know we should have, and would have under other circumstances, but that seemed like a scary option because I felt like they would send us to the hospital, and would that really be a good place to go right now? Especially because we didn't (and don't) suspect that she has the virus?

Oye...so much to think about. That was my long winded way of saying that right now it is hard for all of us to navigate everything, including health decisions about ourselves and our kids.

growing

you're growing up so fast, even though you grow slowly... all of the sudden you can reach all kinds of things you couldn't before, and instead of using a chair to help me make food on the island, you only need a step stool now.

and your curiosity is so big, and so awesome, and ever growing. you are always watching all of us and trying to do just what we do, and most of the time you can.

yes, you can, big girl.

West Trip

We don't often have the opportunity to travel west to see my family. After all, navigating all five of us through school and work schedules, air travel and then figuring out acccomodations between my brother and my parents (cars and lodging) is no small feat! But we snagged a great deal on plane tickets that lined up with a break from school for all three kids, so away we went!

It was great for us allto be together. My parents are usually able to visit us once or twice throughout the year, but this last fall's trip had to be cancelled. And we don't get to see my brother and his kids nearly enough (because he would have to do the same 'navigating' we face). 

The time with all of the cousins together was amazing. My nieces and nephew are aged perfectly between Eli and Maddux on one end and Ruby on the other. They adore and look up to my bigs and can also hang with Ruby. 

We spent a whole week playing in their basement, taking trips to parks, making and eating ALL of the food (11 people require a lot of food!). 

We even got to ski twice and go ice skating!

The last day found us participating in a west version of Christm-Olympics. My mom and the girls worked to put together a very fun game day, complete with prizes.

teetering

you are in high school, but just barely. most of the time it seems that you have one foot in two different worlds: one where you are still a kid and one where you are facing all things leading to life after childhood.

you embrace so many of the new responsibilities, especially when it comes to school and sports and music. but you still love being a kid when the opportunity presents itself.

all grows up

this girl.

even when we might feel a bit plateaued in certain skills or stages, she keeps pushing through to the next thing, simultaneously surprising me and joining her typical peers' milestones.

our ride to school often includes an older friend. most mornings, the two girls exit my car in the carpool line, and our older friend is an extra set of eyes as ruby walks into school. on days without our friend, we usually park and i walk ruby to the sidewalk for the school where i stop and watch her enter the building.

this morning we had no friend in our car and ruby told me she wanted me to walk her in. but by the time we pulled into the parking lot, she was telling me that she wanted to "put on my backpack. get out of car. walk in myself." i confirmed with her twice as we pulled through the winding line, but she was determined.

sure enough, when I pulled up to the front, she kissed me, opened the door and hopped out, waving back at me. i lingered for a few seconds to watch and make sure she was doing the right thing, but i didn't have to: that girl walked straight into school without looking back or getting distracted at all.

so proud.

Open Mic

Last night an abbreviated version of the band Eli is in (99' Corolla) entered the Eddie's Attic Songwriter's Open Mic Competition. If you don't live in Atlanta, Eddie's Attic is a small venue where great talent comes through on a regular basis, whether they are known recording artists or just starting out. (John Mayer was an 'open mic' starving artist here once upon a time.) 

The boys did an acoustic version of two of their songs (each competitor had 10 minutes - there were maybe 20 competitors?). After that, judges chose four finalists to do one more song and then they picked a winner. The boys were one of the top four! 

I can't express enough - the talent present last night blew me away. So many acts from Nashville and Atlanta, and all much older and more experienced than Eli and his friends. The fact that the boys not only held their own, but were recognized as one of the top four is just crazy. I've seen all three of these boys play music in the church since they were in elementary school....also crazy. 

braces

It finally happened.

For a few years, Maddux's dentist had been hinting that once she lost all of her baby teeth, we would likely be referred to an orthodontist. When the last tooth proved to be stubborn, the dentist pulled it and sent us along.

While Maddux wasn't excited about it, she had been aware it was a likely possibility. And once the dentist indicated that her treatment would last 18months, she did some quick math and told us that we needed to put them on NOW so that she could have them removed the summer before she starts high school.

The process took about two hours, and it was relatively painless (according to Maddux). She has 'bumpers' on the back teeth to prevent her from closing her jaw all of the way (thus knocking the front bottom brackets off), but those should come off when she goes for her next appointment. She will likely have bands to help with an overbite, but the process should be straight forward and Maddux is on schedule to have her mouth metal-free for high school.

What Do You Get When You Cross An Elephant With a Skeleton?

So the 'elephant in the room' metaphor is used when there is a big issue or problem that no one wants to talk about. And when someone has a skeleton in their closet, the reference is made regarding an undisclosed fact about that person that they would not like others to know about. When thinking about this particular topic, I wrestled with which one of these idioms was the correct description. I settled on both.

Kids (maybe even all people?) with Down syndrome often display signs of ADHD. My uneducated observation is that some of that is due to delayed development. Any parent of a toddler knows not to really expect their kids to stay 'on task' or not act on every impulse or sit still. At some point, kids grow out of certain behaviors, but those in the T21 community take longer to do so, meaning these early childhood 'symptoms' are still present years after their peers have moved on.

ADHD is not a new diagnosis; pretty much every one, especially those with kids, has heard about it or knows someone dealing with it. But (in my limited experience) the actual diagnosis of it is not an exact science. Many kids exhibit some of the signs, but figuring out if they are showing 'enough' of them gets tricky. When it comes to the big three of ADHD (inattentiveness, hyperactivity, and impulsivity), how do you determine if your child's inability to sit still is ADHD or him just being a kid? Or what about impulsivity? As a parent of two teens that often remind me that the undeveloped prefrontal cortex extends much beyond elementary years, I can assure you impulsivity is something that is present in a wide variety of kids NOT diagnosed with ADHD.

So here is the elephant in the room. Our kids with Down syndrome are more likely to display these signs at a time in their lives when typical kids are not expected to anymore. So many of us start to worry when our kids enter school and these symptoms start to stand out. (Well, let's be honest...we started worrying a long time ago. This is just us adding to the other worries.) We ask our friends, we ask our doctors, we go online... And most of us find out that plenty of our child's T21 peers struggle with the same thing. There is some comfort in that, of course, but unfortunately, most of us are in educational settings where we are the only one in the grade, maybe even the school. So knowing that it is common and 'normal' for our kids to struggle this way doesn't help when it comes to our kid operating in a school where no other kids are struggling that way. So we are back at worrying about what to do.

Enter the skeleton.

If we ask around enough, and do enough deep dives online, we likely come across someone who brings up ADHD. Eventually that leads to medication. ADHD medication, while absolutely vital for many people, often evokes less-than-good feelings. Whether it's because of the experience of negative side effects or the shame of needing medication or the frustration with over-prescribing, it's not an admission I've found people to offer up freely. It's that thing that never came up in the baby books, in the conversations with other moms about what therapies are best or necessary, in the online research about developmental toys or games, or even in the endless doctor appointments. But once I asked the question, I found that we were far from alone in dipping our toes into the world of ADHD and the treatment that comes with it.

That was a loooong intro to get to how this works into our lives. When Ruby started Kindergarten, the impulsivity and inability to focus was brought to our attention daily. It was something we'd seen at home, but either because I work with her one-on-one so much or because I'd gotten used to it, it didn't seem like a problem. So we tried some non-medical options: different fish oil supplements that had great success with focusing. We never noticed any change. So we did research on CBD oil and talked to other parents just ahead of us that described their child 'before' with great similarity to Ruby. We gave it a shot with no improvements. Finally we tried one more 'new and improved' fish oil supplement. Nada.

At this point, I was ready to keep pressing forward. Of course I want Ruby to succeed in school, but I was starting to see how her behaviors were affecting her socially. I didn't want her to miss out on friendships and experiences because she couldn't stop petting someone's hair or writing on their paper or hugging them too hard.

Just before Thanksgiving I met with Ruby's doctor to talk about what we do from here. She had never pushed us to the diagnosis, and certainly not medication, but she saw what we saw and was wonderful in answering all of my questions regarding this next step. (And I had a LOT of questions: I scheduled an appointment for just me to meet with her, without Ruby, so that I would not miss anything.) We agreed on a stimulant, very low dosage to start. We talked through the side affects and what I should see when and how we could stop if we needed to.

With hope and trepidation I gave her the first pill the Monday we returned to school. Her teacher texted me a few hours later with rave reviews. Ruby was talking with such precision and order of speech (oftentimes her longer sentences are out of order), and she was more focused than they usually see her. I was over the moon! However, when I picked her up, she was tired and a bit withdrawn. I knew this was due to the meds, but I still didn't love it. I treaded lightly and just loved on her all afternoon. The next day was the same: great at school, not happy or upbeat at all at home.

The week continued on that way, so I gave the doctor a call before the weekend. As much as we were loving the positives (the teacher was getting so much great work out of her, and her interactions with peers was wonderful), I was not ok with how sullen and almost sad Ruby was in the afternoons. We discussed a few strategies to try for the next week, and if nothing changed, we would discontinue.

By the time the week started again, everything evened out, on both side. Ruby was fine in the afternoons, and she was still having good days at school, though not quite as impressive as the week before.

So here we are, about 7 weeks in. (We did try to increase at one point, but we noticed no gains and Ruby's internal clock woke her up well before 6AM.) Is this medication the silver bullet? Definitely not. Ruby is still impulsive, easily distracted and fidgety, but it doesn't get in the way as much as it did before. And she doesn't appear to experience any of the negative side affects (except for that first week), so we are sticking with it for now.

movies

we own more movies than I can count. they almost never get touched. road trips are almost exclusively when our DVDs get used. I honestly forgot we had such a selection. but this week maddux and lehr are painting the closet where we store the mountains of movies, so they are temporarily housed in the front hall.

ruby loves this arrangement. she has been stacking and sorting and counting and thoroughly investigating them daily since the closet was emptied. she has not seen even half of these gems, so her interest has definitely been piqued.

it has been so fun to hear her reading the movie cases or rejoycing in finding one of her favorites or counting the latest stack she's made of movies she wants to "bring on the airplane for sleepover at grandpa's".

this girl. she is growing and learning and thriving in so many areas!

Christmas

Our holiday was defined by sickness this year, but thankfully it was the mildest version possible. And of any holiday season, this was the best one because we weren't traveling and no one was staying with us.

The first day of break found the kids and I at our annual holiday breakfast with the Marshalls. Halfway through the morning, Ruby came and sat on my lap. She still ate, but wanted to be close to me. This was an obvious giveaway that something was on the horizon since she had three of her favorite older friends there, two of them vying for her attention, yet she still wanted me. But nothing showed up until late that night.

Two or three fevers over the next few days (always gone with one dose of medicine, not to return for 24+ hours), and general fatigue were the only symptoms. I already had a well visit set up for Ruby for the day after Christmas, so while we were there, they checked her out for flu and strep. The flu test came back positive, which shocked me given the lack of 'big' sickness she'd been showing. Lots of naps and breathing treatments (to make sure nothing developed in her lungs) and LOTS of snuggles and movies got us through the two weeks and she returned to school, good as new, on schedule.

Back to our holiday week: Christmas Eve was a beautiful day with warm temperatures, so after breakfast I dragged the family to a nearby trail on the river for a walk. We pushed Ruby most of the way, but when she saw a friend and their new dog, she was out of the stroller and running.

We did sibling gift exchange around lunch and Ruby rallied a little to ride in her Cars car, which Eli had souped up with a new (faster!) battery.

Ruby also spent some time in her new reading 'teepee' that Maddux picked out for her. She was SO excited to see the windows and the doors. Maddux even stocked the book pockets before the big reveal.

We did not make it to Christmas Eve service though: I didn't want to chance it with her having a fever late the night before. We did go for our annual Christmas Eve sushi though, and we drove to see some holiday lights too.

Christmas Day was another beautiful one, but we still used the fireplace (that is just a 'must' for Christmas!). We exchanged gifts in the morning and also did the scavenger hunt for baby Jesus. This is something I usually plan, but Maddux asked to come up with the clues and 'hide' Him this year. I was definitely on-board with that!

We did our annual Christm-Olympics after lunch. This year Maddux asked to be the one in charge of that as well. For a week or so beforehand, she researched games and came up with the plan...I was so impressed and it was a huge help to me! Ruby did great with the games, participating in all of them, after a lunch-time nap.

We finished our night with homemade pasta and sauce and meatballs, and the birthday cake for Jesus. It was a very laid-back, not rushed year, and I loved it.

My favorite part is always the extra 'together time'. We made orange juice and Christmas cookies and pasta and meatballs and gingerbread houses. All of those times, even though each one is short, force us to be together in the kitchen: arguing, laughing and everything in-between.