Tuesday, November 15, 2016

I Will Not Say: Do Not Weep

A heavy heart is an incongruous thing to have when you're happy. But I'm ok with that.

Lately I've posted several times about Big C's progress. He's talking more. He's trying new things.
His progress is exciting!!
True, it's hard at times - watching Big C struggle to master small skills. I long to make it easier for him. But he is making progress. And that's happy.

Other kids are on a different journey. Some children with special needs will not walk. Ever. They will not talk. Ever.

And their families treasure smiles in a way most of us don't because, for these families, a degenerative disease is months, weeks, days away from taking away their child's ability to smile.

This is true for our little friend JM who has Krabbe disease. He just celebrated his 2nd birthday. The experts say he won't celebrate his 3rd.

JM's mom recently wrote in September:
We have not seen a smile for JM since March. We are fortunate to have a very weak cry from him, I will miss the day I don't get to hear him cry.
I will always do a happy dance when Big C masters another skill! But I'm ok with my heart feeling heavy, too, while I cheer.
I don't want to get so busy on our journey that I forget my friends' journeys. I don't want to forget compassion.

I don't want to forget to pray and care for them...and that's exactly what a heavy heart reminds me to do.

We couldn't attend JM's bday party, so we mailed him a gift that the kids picked out from his amazon registry (I love amazon registries!). JM's mom texted me a pic so we could see how excited he was about it! ;)
This adaptive toy is designed so that if JM lifts his hand just the tiniest amount off the button, Olaf will sing and talk. So thankful for the incredible people who design adaptations such as this.
Big C is making progress.

JM is regressing.

Rejoicing and mourning mingle.

"I will not say: do not weep; for not all tears are an evil."
The Return of the King, J.R.R. Tolkien

Thursday, November 10, 2016

Things are Changing

With trick-or-treating there is always the consistency of way too much candy, and there is always the fun of new, different costumes.
2013 - motorcycle rider, minion and bat girl

2011 - a fairy, a farmer and a cowboy

2012 - Pocahontas 

2012 - Carl from Up

2009 - a graduate and  Lightning McQueen pit crew 

2008 - Lightning McQueen pit crew and ladybug
Ok, I'm melting from all the sweetness in those pictures! Sorry for that unintended stroll down memory lane.

Obviously the costumes change just about every year, except when they were little and I could convince them to squeeze into last-year's costume (saving my pennies!).

One thing has always stayed the same. Big C always rides in the stroller when we trick or treat.

Of course when he was a baby, the stroller was a no-brainer. But when other kids his age were toddling down the sidewalk, he was still riding in the stroller because he couldn't walk.

And then when he could walk, he wasn't very steady. And he got tired. So more trick or treating from the stroller.

And on it went for the past six years of trick or treating.

But this year was different! This year Big C walked, or trotted, from house to house. He wasn't too enthralled with the candy (until we got home), but he sure liked moving quickly down the sidewalk!

I put an app on my phone where Big C could push a button and Jackson's voice, which we had recorded earlier, would say, "Trick or Treat" or "Thank you."
Big C's disabilities aren't always visible, so most people expect him to say Trick or Treat. Using this app enabled him to participate without me having to explain over and over that he's not very good at talking yet. (Actually he could make some of the sound approximations, but it wasn't very consistent, so the app filled in!)

Another big step for our boy! Things are changing! He's growing up!
Matt dressed up as Kylo Ren. Big C thought the lightsaber and cape were awesome!

Aunt Jenna made her costume. Big C wasn't quite sure what to think of it all...he was definitely keeping his eye on her!

Tweety - a princess!

Tweety and Aunt Jenna

Saturday, November 5, 2016

Cavalcade of Authors

J was asked to present the book he wrote at the state conference for the Michigan Association for Media in Education (MAME) this week in Grand Rapids.

He was one of several Michigan authors who presented their books in workshops during the MAME conference's Cavalcade of Authors!

That may sound a little more grandiose than it was. He wasn't presenting to the whole conference, and his sessions definitely weren't packed out, but we were sure proud of him being willing to present and spread the message of his book. Speaking in front of people (large or small groups) is not his favorite at all!

He spent quite a few days preparing his presentation and PowerPoint, and he even suggested that maybe we should buy him some dress clothes. J voluntarily wearing something other than athletic shorts or sweatpants hasn't happened in...maybe forever?!

 J spoke on why he wrote the book, what the book is about, and how it can be used in schools. (Moms love seeing their child's name in print!)
After his sessions, he did a little book signing along with the other authors.

Tweety helped with the presentation, but she eventually got a little tired hanging around the book-signing table, so she and Matt explored the beautiful Amway Grand Plaza Hotel.
 She loved the chandeliers!
After J was done with his conference responsibilities, we headed to the Grand Rapids Zoo for an extra treat - J loves animals! It was a beautiful, cool, fall day, and we practically had the zoo to ourselves!!
 Hanging with the lions!

 Monkeying around!
It was a great day full of memories! {Big C doesn't like fancy hotels, so he got extra Grandma and Grandpa time and enjoyed his regularly scheduled therapy day.)

Friday, October 28, 2016

Talking Makes Me Happy

I'm an introvert...lots of small talk and talking without having time to think about what I want to say stresses me out.

But I love hearing Big C talk. That makes me happy! (Big C...new nickname for Blue. Trying it again!)
Yes, Big C is talking! The new therapy center he attends is exactly what he needed!

He's been able to say words for a while now, but he didn't often spontaneously verbalize. In other words, he would say words when prompted but didn't often say words on his own.

That is really changing!

The therapists at his center use iPads to record data and track progress...for instance, they record every time he spontaneously verbalizes or every time he correctly matches objects. That's one of the things I love about this center - I get to see charts and graphs of his progress. Just take a look at this graph!
This graph shows the frequency of his spontaneous verbalization, and just look at how it has changed from when he started to the data taken last week. One day last week he spoke and made requests spontaneously using words around 180 times while he was at the center!!!

How awesome is that! He has about 30 words that he can say. Granted, a lot of them are hard to understand, and the context, location, etc help give clues to understand what he's saying, but we're getting pretty good at knowing his words.

Here's a list of words we hear a lot at the center and at home:
So much fun to see (and hear)!

Sometimes Big C will stand by the door in the morning and say "Pee!" Or he'll say it over and over in the car. No, he's not saying he needs to use the bathroom. He's saying, "Therapy!" He loves going to the therapy center.

Of course J and Tweety think this is bathroom humor and find it hilarious. Ok, I might have found it funny, too! Maybe we should call therapy "school" instead!

Really though, as far as I'm concerned, he can keep on saying "Pee!" He's communicating! I know what he's saying, and we just love, love, love hearing him talk without prompting!

Friday, October 7, 2016

The Story of the Big Toe

The big story is that I don't know the story of the big toe, which is why I'm writing this post.

(By the way, I tried typing this with referring to Blue as "Big C" since that's what we had decided to call him on the blog..but I just can't! I keep wanting to type "Blue!" So even though his eyes are blue no longer, and he doesn't wear blue glasses anymore, his blog name is going to stay Blue. For now!)
Back to the story...

I was doing really well before Blue's birthday. Sometimes in the days leading up to his birthday there is an element of sadness that I battle. I experience the bittersweet emotions of joy in our delightful little boy and sadness that he doesn't know his birthday is coming.
But this year I was doing pretty well. Mostly joy was flowing and the sadness wasn't sneaking up on me. Until it did.

We took Blue to McDonald's the night before his birthday to celebrate with a friend from church who also shares Blue's birthday.
We had so much fun! Blue seemed to know the excitement was somewhat about him, and he was loving it!

But then I noticed his big toe. The toenail was turning black and blue. And I didn't know why.

Right there, sitting on the floor in the McDonald's play place, the sadness jumped in. I felt horrible that I hadn't noticed when he hurt his toe. That I didn't know if he had stubbed it or dropped something on it or someone had stepped on it.

I felt horrible that I hadn't known he was hurt at all. And I felt sad that he couldn't tell me when he hurt his toe. Or how.

Not having full communication with Blue is still the hardest part of this journey. But while it's hard, I also know that when I am locked out and can't get past the communication barrier, God is not locked out. He knows Blue inside and out!
Aunt Jenna knew a tractor toy and tractor book were just what this boy wanted!
And overall, this birthday really was the happiest. Well, once we got past the candles and the singing!
Blue stole the show on his birthday. While he might not have understood everything, he definitely enjoyed being the center of attention. And he loved his presents, whether he knew why he got them or not!
New Signing Time dvd!
He loved it that we all were watching his new movie with him!
Apparently Signing Time dvds are totally awesome!
This boy loves his grandpa, or "pa pa" as Blue calls him.

Friday, September 23, 2016

Happy 7th Birthday

Our baby is growing up! Blue is 7 today!!!

In honor of his growing up, we are changing his name on the blog to Big C, which is his nickname from one of his favorite guys at church.

This little guy...he is amazing! He shares so, so much love without ever saying a word. (Although he is more and more spontaneously communicating verbally in his own way!)

There are many things - like putting on a coat, opening his lunchbox, getting in the car - that are still very hard for him. But it is the easiest thing in the world for him to give away smiles and laughter. He is gifted.

Big C, we thank God every day for you! WE LOVE YOU!!!

And as is tradition, below is his year-in-review birthday video. (Link is here)

Happy 7th Birthday from Amber on Vimeo.

Saturday, September 10, 2016

First Day 2016

Here are the obligatory first-day-of school pictures - 6th grade, 4th grade, and 1st grade-ish.
Can't believe we are old enough to have a middle schooler! So far so good with rotating to different classes each hour. J is not a big fan of getting on the bus an hour earlier than he did for elementary school, but it's nice coming home an hour earlier!
I think Tweety misses riding the bus with her big brother, but she's surviving just fine!
And Blue!
He was supposed to go to a special education school this fall, but we had a change of plans just a week or two before school started. He has been attending an all-day therapy center in August, and we could see huge progress in just a few weeks, especially in toilet-training and communication.

So...we decided not to send him to the special ed school so that he would have time to still go to the therapy center six hours a day. I never like making these decisions, but so far everything is working out great.
Not a big fan of having his picture taken!
He finally smiled when I started singing! Love him!