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Saturday, April 30, 2022

Miss Amazing

I am so far behind on updating this blog!

 Back at the end of July and beginning of Aug, Kayla and I headed to Nashville, TN for the National Miss Amazing Summit

South Carolina didn't have a state event; instead it was just video submissions. Kayla and another teen represented SC in the Teen category. 

This was Kayla's first time going to a Miss Amazing event and she had a blast. She enjoyed meeting so many other representatives from all over the U.S. 

There is also a pretty cool story about the dress she is wearing. The dress has come to be called "The Sisterhood of the Traveling Dress" and it has been passed around between girls in the Down syndrome community with the goal of being worn in every state. 

Kayla and Micky bonded over their love of Hamilton (as you can see in their pose below!) 

Kayla's "Passion Performance" was dancing to "My Shot" from... yep, Hamilton! 
I just love her confidence on stage! This video was from her rehearsal:

Thursday, July 15, 2021

In The Blink of an Eye, She's Eighteen

 Yes, my little "Blueberry Eyes" - the girl, not the blog - is eighteen years old today. 

How can that be? How can it be 18 years since I took this tiny little human home? 

On her third birthday I wrote the post "Guilt" that later became one of the stories included in Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives

As her birthday was approaching I've thought about that post, and her birth day, and how I felt and handled the realization that she was born with Down syndrome. In that post I said that I hoped writing it all down would lead me on a path to healing and forgiveness. All these years later I finally realize that I have nothing to forgive myself for. 

Do I wish that I hadn't zeroed in on her face in those first moments of her birth and hadn't seen "DOWN SYNDROME" flashing at me in bright lights? Of course. 

Do I wish I was as oblivious about the signs of Down syndrome as my husband was and all I could see was this little human being we had created - our first child, my daughter? Of course. 

Do I wish that one of the very first things I said to my mom as I basically thrust Kayla into her arms before she could get a good look at her wasn't "They think she has Down syndrome?" Of course. 

Do I wish that I was crying tears of joy and happiness instead of sobbing alone over the sink hoping no one would see me like that? Of course. 

But all of that happened naturally and organically and they were the thoughts and feelings I had at that time in those moments - and I don't need to forgive myself for that. 

What matters more than those first few moments of shock I had upon seeing her face and feeling an out of body experience is what came after. What followed in the 18 years since has been love. So much love. Like with raising any child, as I've always said, comes joys and challenges and raising Kayla hasn't been any different. There has been so much love, joy, and adventure in our life with Kayla. I had a chance to get to know her - the person, not the diagnosis.

Kayla loves big. Feels big. Laughs big. Lives big. She loves family and the connectedness of the extended family and having aunts/uncles/cousins. When we went to my grandmother's funeral she greeted everyone as if she had known them for years - even if she probably didn't really remember some of them because she was so young the last time she saw them; and even the ones she had never met before. "Kayla this is your great-great-uncle so-and-so." Kayla, "Oh! Hi Uncle!" followed by her signature big hug.

She finds joy in all of the little things. She's just as excited for your birthday as she is for her own. She's full of life and she loves to experience life. Kayla is outgoing and so social. She's got the biggest heart, has the kindest of souls, the biggest of smiles, and can be the most awesome-est of friends - and I wish more people would see that and appreciate that about her. She can still light up a room with her energy and personality. 

She has confidence in herself that I wish I had. She doesn't care how others might see or judge her - she just goes out and does her thing. 

She still loves coloring - she can sit and color those adult coloring books for hours! Other hobbies are still dancing/singing (Hamilton soundtrack on repeat!), being involved with Summerville Miracle League baseball (as a player and a volunteer and Junior Board Member), Special Olympics golf and track and field, and her favorite: archery. 

I so enjoy watching Red Sox baseball with her and how enthusiastic she gets. I love that she knows the players. "Come on JD!" "Yes Bogaerts!" "Devers got a home run!" 

So. Eighteen. Adulthood. While the concept of adulthood, independence, and her future still scares me in some ways, I'm not going to dwell on it in this birthday post! She still has one more year of school to go (she repeated Kindergarten). Her future is bright; a lot brighter than I probably thought it would be in that delivery room. 

She is happy. She is loved. She is amazing.
She really is. 

Happy 18th birthday, Kayla!

Tuesday, March 16, 2021

A Dystopian Year In Review

 March 16, 2020. 

That was the day South Carolina 'shut down'. That was the day schools closed and work from home orders were given. It was so surreal, wasn't it? We thought: two weeks. Two weeks and they'll be back in school. How little did we know and how quickly things changed. 

In the week leading up to that date Lucas had a soccer game. I remember watching from the sidelines as the ref called the 2 captains over for pregame stuff and then indicated a handshake...I thought to myself, "Ugh. Why? The kids have been hearing in school and on the news and at home to forego handshaking." After the game the parents lined up on the sidelines like we had been doing after each game, the players would run by and slap hands with all the parents. But this time we just raised our hands in the air and cheered for them as they ran by.

Lucas' 12th birthday party was the weekend before at Stars and Strikes: an entertainment center that featured bowling, among many other activities. I look at pictures from that party now and think, "I can't even imagine." South Carolina had the first 2 cases of the virus and we were stressing hand-washing and elbow bumps. 

On March 15 Lucas was invited to a birthday party at the very same place he had his party a week before. I was surprised it hadn't been cancelled. Stars and Strikes, like many other places, were already instituting more stringent, and frequent, cleaning protocols. They also had hand sanitizer located throughout the facility. I dropped Lucas off with a reminder to try not to touch too many surfaces, no high-fives, and use that hand-sanitizer. By the time I picked him up the school closure had been announced. 

He's been home ever since (as has Joe, working from home). His school did have an in-person option the start of the new school year, but he wanted to try homeschool, so here we are. 

Right after schools were closed and the 'work from home' order was given it wasn't long before I was taking an eraser to the calendar as one-by-one things were cancelled: archery tournaments, soccer games, chess club, etc. 

When I needed to go to the grocery store it felt like Hunger Games. I needed to get in, get out. Get the bare minimum. Don't linger. Don't touch more than I needed. Keep my distance. All to avoid this invisible enemy. Hoping that I wasn't bringing something back to my family. 

The grocery store was where it really started to feel like a dystopian world. Announcement and signs to "keep 6 feet apart". Store workers standing by the carts and wiping them down for you. Empty shelves. Signs on shelves "1 per customer" on cleaning/paper products and "4 per customer" on canned goods. Partitions (or sneeze guards) going up between customers/employees. Coin shortages. 

Did anyone else watch a movie or old TV show and internally cringe at how close people were? I would see a crowded subway scene and think, oh gosh, that wouldn't be happening now. Or, yikes, they are way too close together. Haha! 

We didn't do any major house renovating projects, or pick up new hobbies; although Kayla started doing Zoom dance classes and Lucas did grow watermelon. 

We did walks, bike rides, geocaching and just got out in nature so we wouldn't feel 'stuck at home'.

They did summer camp at home.

Kayla, Lucas, and I haven't had a haircut in over a year (Joe just shaves his off!). 

And here we are a year later; adjusted to this new normal. The new way of life. We are slowly trying to get some of that old life back though. Lucas joined Kayla on the archery team since he homeschooled this year. They only had one tournament though; but Lucas did great for his first-ever tournament with a score of 237.

Soccer just started back up for Lucas, and Miracle League baseball for Kayla. 

Here's to hoping we can continue on this path to reclaiming the normalcy we once had. 

Tuesday, February 23, 2021

Entering the Teen Years!

My 'baby' turns 13 today! 

 I can't believe I have two teenagers now. As much as I've stressed to Lucas how exciting turning 13 is and that it's a milestone birthday; he just isn't buying it. He thinks there is nothing unique about 13 - despite it signifying the start of the teen years!

In his words there is nothing different that happens when you're 13:

- you can't drive

- you can't vote

- you can't play the lottery

- you can't drink 

So ... nothing changes. I guess he has a point! 

A lot has changed since his birthday last year. We were in Myrtle Beach for Kayla's archery tournament where even his great-grandpa (who lives in WI) attended! He had his birthday party at Stars and Strikes for a bowling/laser tag/bumper car/arcade celebration ... and that was a week before our state shut-down. Birthdays are a much quieter affair since then. 

He's no longer Kayla's 'little' brother as he's outgrown her by several (about 10!) inches; we make sure to say 'younger' brother now, haha! The way he's been growing over this last year I was sure he would be taller than me by his 13th birthday, but I'm still hanging on to a quarter inch of height! I'm sure by my birthday I'll be looking up to him though!

He still has his hobbies of soccer, chess, reading, Lego-building, and Minecraft-playing. He's been experimenting with creating stop-action movies with his Lego creations. And since he's homeschooling this year he's giving archery a try. 

It's been nice having him home this year and spending that extra time with him watching him grow and learn; especially because I know the day will come all to fast when he's out on his own. 

I just can't believe he's a teenager now!

Happy 13th birthday to Lucas!

Wednesday, July 15, 2020

A Quar-seven-tine Birthday

Last year's Sweet 16th birthday was the best ever. Nothing could compare to that magical day. However, who would have predicted what birthdays would look like come 2020?! This year said it wasn't even going to attempt to match last year's birthday!

Kayla woke up on her birthday (last month, I'm late in posting!) so excited to be SEVENTEEN! She came downstairs and saw the little bit of decorations I put up in the kitchen and declared it the "best birthday ever!"

I was like, "Ummm...Kayla? Better than last year? Really? Your Sweet 16 going to Boston, seeing the Red Sox, getting a ball from Mookie Betts (we won't talk about the fact that he's with the Dodgers now!)? Wasn't that your best birthday ever?

She paused and said, "Best family birthday at home ever!" Haha! I somehow think the birthdays spent at home when she was actually able to have a sleepover with her friends and go to the water park were better birthday celebrations, but I'm glad she she is easy to please! She picked breakfast (pancakes) and dinner (pizza) and she had a fun video birthday tribute which she enjoyed seeing all the birthday wishes sent her way. 

Birthdays in this covid-world are definitely different, but you just make the most of it and make it as special as you can!

Happy 17th birthday to my beautiful girl! 

Friday, June 05, 2020

A Sibling's Love

I've seen a meme floating around social media every once in a while with various pictures and the caption:

If you want to know how to treat someone with a disability just watch their siblings, they will show you.

I thought about Lucas and all the times he has shown how thoughtful and caring he can be towards Kayla. Even back when he was in preschool and early elementary school he seemed to always put her first. He frequently would pick something out of the "treasure box" for Kayla. (It goes both ways, if Kayla was at a medical appointment she would always ask to get a lollipop or sticker or toy for Lucas).

There was the time he wanted to recreate the Shoulder Buddy she lost/left at sleep-away camp.

I've blogged about the time we were at a banquet and there wasn't a real option for a gluten-free dessert and Lucas told me, "I know what I can do with the $5 I got from the tooth fairy. Tomorrow I'm going to buy Kayla a gluten-free cupcake from that truck. Well first I was thinking I could get her a bracelet (from one of the vendors in the exhibit area), but then I thought she doesn't really wear bracelets. So then I thought about getting something for myself. But then she didn't get to have anything last night or tonight and I did, so next I thought about buying her a cupcake." At the end of that post I wrote, "May he always be this concerned and caring and have such a big heart."

So he's not so little anymore ... he just finished his first year of middle school (!). How are things between them now? Does he still show concern and caring for her? Does he still have a big heart? Is he still an example of how you treat someone with a disability?

Well let me give you an example of just how big his heart for Kayla is ... something that truly shows the love that only siblings can have for one another.

Lucas' school participates in a secret gift exchange over the holidays and last December Lucas came home with a gift of ... a rubber chicken. A rubber chicken that squeaks. That annoying kind of squeak like a dog's chew toy; who knows maybe it came from the pet section of the store. I pretty much told Lucas that chicken was banned from the downstairs and he could squeak it all he wants upstairs in his room, haha!

Needless to say Kayla is not a fan of this chicken either. She will tell you in no uncertain terms that she hates that chicken. If Lucas is playing with it you can hear a deep loud groan/sigh from Kayla, "Ugh! I HATE that chicken! I hate that squeak noise!"

One day Lucas went outside to play and Kayla was in her room. All was quiet upstairs and then I heard Kayla open her bedroom door, pause, exclaim something about that chicken, and SQUEAK. Again came the SQUEAK of that chicken. Joe and I looked at each other in confusion. "Isn't Lucas outside?" I asked him. He replied that he thought so. I said, "Well there's no way Kayla would be playing with that chicken, she doesn't like it."

Then Kayla yelled out in frustration something about HIS WEIGHT!

I'm a little more confused than before. I ask her what she's talking about.

"Lucas put this weight on the chicken!"

Me, "There is a weight on the chicken?"

K, "YES! Outside my door! I don't like this chicken!"

Turns out Lucas squeezed/deflated the chicken, placed it on the floor in front of Kayla's door and put a hand weight on top of it. The weight was to keep it depressed so when she would pick up the weight to move the chicken it would of course SQUEAK.

In essence he set a booby-trap for her.

Because he loves her so much and knows how annoyed she is by the squeak of the chicken.

So there you have it ladies and gentlemen. Watch how someone treats their sibling with a disability and you will see that special love siblings have for each other.

Yes, Joe and I had a good chuckle about this conniving and devious plan of Lucas' to sabotage his sister - after all - isn't that what siblings are for whether they have an extra chromosome or not?

Sunday, February 23, 2020

Birthday Number Twelve

My not-so-little kiddo is now twelve! Lucas is almost as tall as me now; I wouldn't be surprised if he's taller than me by his 13th birthday!

Kayla had an archery tournament in Myrtle Beach, and just like a few years ago, it fell right around his birthday. My mom, stepdad, sister, and grandfather met us in Myrtle Beach for Kaya's tournament and an early birthday celebration. So glad we were able to get together.

 When we got back home we had a fun time roller skating on his birthday, and in a couple weeks he'll have his friend birthday party. 

He continues to enjoy soccer, chess, reading, Legos, Minecraft, and playing outside. He's a pretty great kid with a kind heart and big dreams ... and I can't wait to watch them all unfold.

Happy 12th birthday Lucas! 

Monday, October 14, 2019

I Am ...

A fellow mom from the Down syndrome community put together a wonderful video for National Down Syndrome Awareness Month.

This video features teens with Down syndrome sharing what they are - i.e. swimmer, kind, smart, strong, a star.

Kayla, my *fearless* girl, makes an appearance at :58 seconds in. Check her out!

Wednesday, October 02, 2019

On Her Own Time

Kayla recently joined the Special Olympics Track team. She also recently got a fitness watch. The watch can track walking, running, biking, and sleeping. She likes to press the "bike" icon before we head out on our usual morning bike ride (PE time!) even once coming to a sudden stop in front of me and yelling "I forgot to start my watch! (on bike mode)"

Oh this child of mine cracks me up. At this most recent track training session she was lined up to run ... and she got distracted making sure she was putting her watch to the "run" setting. She completely ignores the "GO" and instead stands at the line making sure she is getting her watch set correctly. It's not that she didn't hear the "GO", it's not that she couldn't hear the "Kayla, go!" ... it's that she wouldn't go until her watch was ready for "RUN". She is definitely on her own time, haha! Good thing this wasn't an actual competition!

As much as that first video makes me laugh, this next video warms my heart. As she is concentrating on her own run she makes sure to encourage and cheer on the runners coming the opposite way.

This is her first year on the track team (she has previously been on the Running Clubs at her elementary and middle schools) but she generally doesn't seem to have a lot of stamina to keep running ... she's more like a short sprinter and then a walker. So I was surprised when I saw her go the distance during this training run and not stop to walk at all (twice). I was also surprised when I asked her if she wanted to join the track team and she enthusiastically responded with, "Yeah, I love to run!" Cue to me giving her the side-eye look.

I'm excited to see how far she'll progress during training and what she'll do at Spring Games!

Tuesday, October 01, 2019

Down Syndrome or Trisomy 21

Today, Oct 1, is the start of National Down Syndrome Awareness Month.

For 10 years I participated (and later hosted) the annual 31 for 21 blog challenge. I didn't do it last year and I doubt I will put up 31 posts this month.

I do miss doing it, but over the years interest and participation waned; and most people now just use FB, Twitter, and/or Instagram to post a daily picture or fact about Down syndrome.

After 10 years of 31 for 21 and 13 years of blogging in general I'm not sure what more I can blog about anyway. What more about Down syndrome can I write about? How much more awareness and acceptance can I preach about? And aren't I just preaching to the choir anyway?

I did read an article in a local magazine that was timely enough for me to put up at least this post for the start of National Down Syndrome Awareness Month.

This paragraph got me thinking about a few things:

This describes the latter two of Trisomy 18 and Trisomy 13 being caused by extra chromosomes but it doesn't mention anything about what Down syndrome is. It also seems to separate Down syndrome as one thing and T18 and T13 as a different type of condition when they are all essentially very similar and they are all caused by having a third copy of their respective numbered chromosome. So it's not just the 'latter two" that stem from an extra chromosome.

It also got me thinking about the language used to describe each condition. Down syndrome is also Trisomy 21 but very rarely referred to as such. Trisomy 18 and 13 are also called Edwards and Patau syndromes but seem to be more frequently referred to by their trisomy diagnosis. I wonder why that is. Is it because Down syndrome is more widely known because it's more common?

I noticed even national (and international) organizations all use Down syndrome. I don't know of all the organizations for T18 and T13, but did find the Trisomy 18 Foundation (and most of the search results for other websites more often than not use T18/13 instead of Edwards/Patau syndrome).

I got curious and started digging a little more.

Down syndrome is named after Dr John Langdon Down who, in 1876, described a similar set of characteristics that people had, but it was Dr Jerome LeJeune who discovered, in 1958, that people with those characteristics all had a third copy of chromosome 21.

Patau syndrome was first observed by Thomas Bartholin in 1657 (!!) but the third copy of the 13th chromosome was discovered by Dr Klaus Patau in 1960. I wonder if it ever called Bartholin syndrome and later changed to Patau syndrome? Or even though it was observed by Bartholin was there never any specific medical diagnosis name given to it until Dr Patau discovered the third copy of that chromosome?

All I could find out about Edwards syndrome is it was first described by John H. Edwards in 1960.

Language can and does change throughout the years. Dr Down used the term "Mongolism" to describe what we now know is Trisomy 21. It wasn't until the early 1970s that Down syndrome was more widely accepted - even though 12 years before that Dr LeJeune discovered the extra chromosome! So why start calling is Down syndrome at all by the 1970s; why not call it LeJeune syndrome, or, as with Trisomy 18 and 13, refer to it as the trisomy that it is?

I also wonder if years from now the term Down syndrome does fade away and it simply becomes more commonly known as Trisomy 21 will there not be as many preconceived notions/ideas? Will people think of something else when they hear "Trisomy 21" than when they hear "Down syndrome"?

Lots of random thoughts from that one little paragraph!