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Friday, February 23, 2018

Double Digit Birthday

Ten. Lucas is ten. How is it even possible that a decade has passed since I gave birth to this sweet boy of mine?

But it's true. I blinked and he's ten years old today.

Our annual birthday pancake tradition at IHOP

He still enjoys all the same things he has for the past several years: reading, Harry Potter, Minecraft, soccer, and chess.

(First place in a tournament a couple of weeks ago!) 

He's still my little boy with a heart of gold. He's still caring, empathetic, self-less, friendly, social, and sometimes still wise beyond his years. We still contribute to the "donation jar" that he started a couple years ago. Regularly donating what's been collected and starting over.

A couple months ago he ran in a 5K to begin his training for the Cooper River Bridge again. He ran this race last year (finished 3rd in his age group) and has a goal to beat his time and finish in under 50 min.

He's also, again, running for a purpose. He's raising money for LuMind RDS Foundation, as he did last year. If you'd like to make a donation and help him reach his goal I know he will be so thankful.

I can't wait to see where he'll go and what he'll accomplish in the future; but I'm also in no hurry for him to grow up. Time, slow down a little.

Happy 10th birthday Lucas!
"I love you more!"

Wednesday, February 21, 2018

Christmas in Helen, GA

We spent Christmas (I know, it was 2 months ago already) in Helen, Ga. It's a quaint little Bavarian-themed town in the mountains. We were hoping for snow, but that didn't happen (at least not until later).

We had a fun week away exploring a new-to-us area.

Night-time mini golf with Christmas lights/decorations all around

We did some geocaching in the surrounding area

Had to visit Babyland, home of the Cabbage Patch Kids!

And Kayla used some Christmas money to adopt her very own Cabbage Patch Kid. 

Sharing a Bavarian pretzel

A nice hike to the twin Anna Ruby Falls

Thursday, December 14, 2017

Love You Forever

During my grandmother's funeral Mass one of my uncles read the children's book "Love You Forever" by Robert Munsch.

I don't think there was a dry eye in church as he read through the familiar images of a mother rocking her baby and singing

"I'll love you forever, 
I'll like you for always, 
as long as I'm living, 
my baby you'll be"

through her child's life. And of course as the story goes the one night she doesn't go to her son's house he goes to her house and returns the sentiment to her ... and then starts the tradition anew with his own newborn child.

After the service we gathered for a luncheon and that's where my own version of rocking my baby played out.

Lucas wasn't feeling well - lingering headache from a possible migraine the day before or sinus issues from flying and/or allergies from pollen in a different state affecting him - and I could see the energy drain out of him.

He tried to curl up on that cold, hard, metal chair and let his eyes and his head rest, but I knew he couldn't be comfortable like that.

I've told him before that he's too big to fit in my lap anymore even as he insists he isn't. I tell him there isn't any room for those legs and arms to go when I hold him.

But I also know that the time will come, too soon, when he won't want to sit in my lap, or be held in my arms, and so I relish those moments when they happen.

So I took him in my lap, even though he's all arms and legs now, and let his legs dangle off the sides of mine, and I tried to make him as comfortable as I could while he slept it off.

As I held him I thought of the book my uncle read. I looked down at this face, growing up when I'm not looking, and thought of the verse that parents everywhere have repeated to their kids, thanks to Robert Munsch, and how true the words are:

"I'll love you forever,
I'll like you for always,
as long as I'm living,
my baby you'll be"

Wednesday, November 29, 2017

Honor Roll!

Kayla made the Honor Roll!

Academics do not come easily for her, at all, so this was definitely hard-earned. I was not able to be at the ceremony but I heard she was just beaming and so proud when her name was called.

Requirement is 86 and above and she had a couple 85/84 last year so she was soooo close! So proud of her during this first quarter marking period!

Thursday, November 09, 2017

Chess Accomplishments

As I mentioned in this post, Lucas is really enjoying the game of chess and becoming quite a decent player (if I do say so myself!).

A few weeks ago the library chess club had a small tournament among their members and he came in third.

A few weeks after that he participated in the Charleston Fall 2017 Chess Scholastic tournament that was an official US Chess event. There were 21 players in his ratings bracket.

This kid took 2nd place! So proud of him!

There is another tournament this weekend that I wish he could participate in, but he has a soccer game (and he missed a game the weekend he participated in the chess tournament); the joys - or conflicts - of having interests that overlap!

Tuesday, October 31, 2017

Monday, October 30, 2017

Human Trisome Project

The Human Trisome Project is a ground-breaking research initiative into Down syndrome and researching the medical complexities that can accompany having an extra 21st chromosome.

I first heard about the vision for this project at a Global Down Syndrome Foundation medical round table discussion at the NDSC Convention a couple years ago - exciting to see it's up and running now!

The mission of this project is to "...significantly advance our understanding of several major medical conditions and human biology in general, enabling the developmental of novel diagnostic and therapeutic tools to serve not only individuals with Down syndrome, but also the billions worldwide who experience conditions affected by trisomy 21."

This research will be the larges and most comprehensive of its kind helping to answer the questions of why people with Down syndrome are predisposed to diseases like Alzheimer but seem to be protected from some kinds of cancer.

They are currently enrolling anyone between the ages of 6 months to 89 years.

They are enrolling:
- people with Down syndrome
- people who have a family member with Down syndrome
- healthy people who don't have Down syndrome

Basically anybody and everybody can participate in this important research project.

Click here for more information and click here to get involved.

Sunday, October 29, 2017

If I Could Go Back

Remember the online documentary about 5 roommates (4 with Down syndrome and 1 with Williams syndrome) in England called The Specials

Their website was recently relaunched where Seasons 1 and 2 are available to watch and they have a trailer to their new film they are releasing called "If I Could Go Back..."

It's a film geared towards new parents and made in corroboration with parents who have children with Down syndrome from around the globe, to include UK, USA, France, Nepal, Australia, Sweden, Spain. The parents are reflecting on their experiences and passing on some insight to new parents. If I could go back, what would I tell myself? I wrote myself a letter about that!

You can check out their Facebook page and YouTube channel, too.

Saturday, October 28, 2017

Missing Out On Beautiful

Missing Out On Beautiful is a collection of seven short essays about raising a child with Down syndrome written by Amy Julia Becker (author, including the book The Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny).

Amy Julia is offering this collection of essays for free. The book downloads directly to your desktop for reading.

The last essay is actually an interview with her daughter, Penny, who is 11 years old and has Down syndrome.

Friday, October 27, 2017

Deja Vu at the Iron Mountain Iron Mine

Last month when we went to Wisconsin I thought it would be neat if I could take the kids to Iron Mountain Iron Mine. I went there when I was 13 and my brother was almost 11. I thought it would be fun to take Kayla and Lucas to a place I had been when my brother and I were around their ages.

My sister hadn't been before, so she got to experience it too.

Back in the day ... with my mom, uncle, and brother.

Now ... with Lucas, Kayla, and my sister

My brother and me

Lucas and Kayla

Back in the day 

And now my own kids posing with the big tire - who would have thought?