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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!

Saturday, September 07, 2019

The Root Beer Float Challenge

Over the summer I received an email about a new game coming on the market from Playtacular called The Root Beer Float Challenge.

I was intrigued, but I admit I was also thinking our game closet really doesn't need another board game! I'm glad I decided to take a chance on this game (disclaimer: I received a complimentary game) because this isn't just any board game - it's not a "board" game at all. This is a get-out-of-your-seat and complete challenges game. I like that this is an active game as it puts a new spin on a traditional family game.

The object of the game is to be the first person to collect all the pieces for your root beer float: ice cream, root beer, cherry, and straw. The pieces are cards with those images. You collect the pieces by succeeding in various challenges using the ice cream "ball", cherries, straws, and tin canister that everything stores neatly inside. and the challenges are either done solo, head-to-head (you pick someone to compete against) or cooperative (you pick someone to do the challenge with).

There are 120 challenge cards and much hilarity follows! Try placing the ice cream ball between your knees/thighs and walk so many steps to squat and drop the ball in the canister! I looked so funny waddling over to the canister trying not to drop the ball and everyone was laughing so hard I almost peed my pants!

We brought this game on our road trip this summer (easy and compact to travel with) and played at my mom's house; everyone had a great time and got a lot of laughs out of it. When we were home Lucas had a couple friends over and couldn't wait to show them and play a game.

This is a great family game geared towards ages 8+ and for 2-8 players. It would be great for a birthday party!

Monday, August 19, 2019

Another School Year ... Another Decision

Last year when we made the decision to homeschool Kayla it was mostly with the intent of doing it for 9th grade. Our plan was to then re-apply to the Catholic high school we had thought she would attend in 9th grade and hope that she would get in this school year.

The application process opened last Oct/Nov. It was just a couple months into the new school year and our new adventure of homeschooling, but I wanted Kayla's input. I asked her if for 10th grade she wanted to continue homeschooling or go to this other school. She immediately said "Keep homeschooling!"

I really wasn't sure if she realized what I was asking, considering it was about 9 months away ... and did she really understand that I was talking about something so far in the future. Not go to the high school now, but next school year. Thinking that far ahead is kind of abstract for her. I kept emphasizing I was talking about 10th grade. She kept saying homeschool.

This really did surprise me because she has always enjoyed going to school and being around her classmates. Kayla is usually not consistent with her answer either - if you keep asking her the same question she'll give you different answers. Over the next several months, some times several times a week (ok even several times in one day) I would ask her what she wanted to do. 90 percent of the time she said homeschool (and she's usually never consistent like that). The few times she said she would go to the high school it was with a sigh, like she was resigned to going, or that she thought that was the answer I wanted to hear since I kept asking the question. She never said it like she was excited about it.

I tried having conversations with her about what she liked about homeschooling, or why she didn't want to go back to a school building. Conversations like that are hard for her, it's hard for her to articulate exactly what's going on in her head. She did tell me that "there are too many kids, it's too loud and I can't concentrate and get frustrated." She's never expressed that before. Ever. I wonder if once she was out of the school environment and it was just us at home doing school work if she realized the difference.

I continued with the application anyway; I didn't want to fully close that door in case the closer we got to the end of the school year she might change her mind.

And she did get in. She was offered a spot for the incoming freshman class. She steadfastly maintained that she wanted to homeschool - even after being told her BFF would be going there.

This decision ate at me for months. Just like it did last summer when we were trying to figure out what we were going to do. I went back and forth, pros and cons. Do we just go ahead and enroll her since she got in? She has always adjusted well to transitions and new changes and I'm sure that if we talked it up and were encouraging about it and once school started she would have jumped right in and probably enjoyed it.

But the truth is, I found that I was enjoying the homeschool thing, too. It was ... relaxing. No more stressing about homework (which was a big stressor through middle school and I knew it would only get more so in high school).

So we are continuing on with our homeschool journey. I do second-guess myself, I always will. I always do about everything! I worry that she's 'missing out' - on what exactly that is I can't say, but just the whole experience. But she's involved in things in our community. The homeschool archery team, an acting class she took all last year (and will again this year), a new Fit Kids class and monthly art class she'll do this year.

She's happy about homeschooling, and that's important to me. So here we go again ... welcome to 10th grade!

I also offered to homeschool Lucas (as I did last year, too), but he wanted to continue going to his school. He said he would miss his friends there! It's a good fit for him and he's happy with his school choice as well. This school year brings new beginnings and more responsibilities for him as he is now in MIDDLE SCHOOL! I can't even believe it.

6th grade here he comes!

Monday, August 12, 2019

PLAY Campaign at Fenway Park

One of the reasons we went to Boston was for Kayla to participate in the 3rd Annual PLAY Campaign (Promoting a Lifetime of Activity for Youth). This campaign is from the Professional Baseball Athletic Trainers Society (PBATS), the Taylor Hooton FoundationHenry Schein Cares, and the National Down Syndrome Society.

This program takes place at several Major League Baseball parks across the nation and brings together kids of all abilities for an inclusive, on-field, educational and athletic clinic with the PBATS.

When I first heard about the program a couple years ago and realized the Red Sox were one of the participating teams, I was so tempted to jump on a plane and take Kayla! However, she was at camp so the dates just didn't work out. This year when I saw the email about the upcoming campaign I wasn't really expecting that we would go, but just for fun I checked the schedule to see when they would be at Fenway ... and it was July 15, Kayla's birthday. The Red Sox were also in town and would be playing a game that night. Everything was telling me to GO! Don't miss this opportunity!

It's no secret that I'm a huge Red Sox fan (and of course raising my kids as such!) and I've wanted to take them to a game (we did see the Sox play the Braves in Atlanta a few years ago, and we also went to a Greenville Drive game - minor league team of the Sox here in Greenville, SC). But, FENWAY! This would be not only going to a game at Fenway, but getting to experience Fenway up close and personal.

A road trip would also give us a chance to stop in CT and visit with my dad's side of the family (which, again, timing was perfect for this as the day we stopped by was the day after the 7th anniversary of my dad passing away. It was so good to be with his family).

So! PLAY Campaign! It was such a neat experience and I'm so glad we made this opportunity happen for both Kayla and Lucas (siblings were able to join in on some of the activities) ... and I lived vicariously through them :)

We made it! Fenway Park!

Another bonus was getting to hang out with a friend I met via blogging years ago; she signed her daughter up to participate too!

She's on the field at Fenway! And there's the Green Monster!

Doing some warm-ups


 Only my girl ... cartwheels at Fenway!

Lucas catching a few fly balls

Taking some batting practice

Warming up in the bullpen 

I might have been a liiiittttle bit excited to be on the field at, did I mention, Fenway Park!

With pitcher Brian Johnson who was there with pitcher Marcus Walden for Q&A session

What a fun experience for everyone, and a fun way for Kayla to spend her birthday!