Friday, January 20, 2017

Fall Soccer 2016

I think this will be my last 2016 post!

J and Tweety got to play on the same soccer team last fall. It was fun to hear them encouraging each other (and so nice to only have one practice and one game each week!)!

The coach gave Big C a shirt...he was their biggest fan!

 Tweety ready to back up J if needed!


I loved seeing them play together! J loved to help Tweety learn new skills, and she actually appreciated his extra coaching (usually!)!

Thursday, January 19, 2017

Christmas at Home 2016

Before traveling to Kansas for Christmas, we had our own little family Christmas at home.

J and Tweety serenaded Aunt Jenna that morning in the barn to let her know it was time to open presents!
 They crack me up!


 Big C mostly got cars and balls for Christmas...his favorite things!
 So entertaining!
 Aunt Jenna is the expert at putting together toys that come with lots of parts.
So thankful for our little family and spending time together!

This was our Christmas card pic. I know...I'm so not good at making sure we're dressed cute and perfect! Oh well! This is our life!

Sunday, January 15, 2017

Kansas Christmas

I've been itching to write more, but I keep thinking I can't write anything until I finish up 2016, so I'll try to finish 2016 posts this week and move on to new things!

We traveled to Kansas for Christmas this year! Mom's house was bursting with chaos and happiness and love! There are 13 adults and 21 grandkids!

The kids were super happy to stay in a hotel on the way there and back!
  Favorite game of the week!
 Big C loved his uncles again this visit.
 All the grandkids with my mom. Big C was not so fond of picture time.
 The whole family!
 The best picture moment...mom finding out that my youngest brother and his wife are expecting their first baby!
 I rarely saw J and Tweety...they were always with their same-age cousins playing outside. But they both also loved spending a little time with the little cousins
 

Saturday, December 31, 2016

A Time for This

I know the words almost by heart:
"For everything there is a season,
And a time for every matter under heaven:
A time to be born, and a time to die...
A time to weep, and a time to laugh,
A time to mourn, and a time to dance..."
Facebook, with all its faults, often brings these seasons crashing in on each other.

Yesterday I was scrolling through posts on facebook, hurrying past news articles and memes, looking for updates from friends.

The three posts came almost one after the other in my newsfeed.

One post, accompanied by a picture of a smiling couple and a sparkling ring, announced an engagement.

Another post, this one with a picture of a couple nestled together against a stack of boxes overflowing with stuffed animals and a baby blanket, announced the arrival of a baby coming this summer.

And the third post, sandwiched between the other two, came from a young friend, scarcely past the newly-wed stage in her marriage:

"Thank you for all the love and support today, it has been the hardest day of my life and I could not have gotten through it without all the friends and family surrounding me. Earlier today my husband went to be with the Lord. He collapsed suddenly at work. They still aren't quite sure of the cause."

A time for everything. Laughing and dancing. Mourning and weeping.

Jubilation in wedding and baby announcements. Devastation at the loss of life and newly-wed bliss snuffed out.
We are, most of us, well acquainted with this carousel of seasons whirling in life. While we wish to hide from pain and seek dancing instead, there is no hide-and-seek to play. The seasons - they just come.
Nearly 13 years ago, within the span of almost two months, I celebrated the tiny life growing within me; I mourned the miscarriage that started on Mother's Day; I wept at my dad's deathbed; and I rejoiced at my brother's wedding.

It is now nearly time for 2017 - time for new seasons of weeping and laughing and mourning and dancing.

And while many people are contemplating their New Year's resolutions, I am sitting here, an hour before 2016 slips away, wondering about the seasons to come this year.

It's easy to fear 2017's seasons, not because I know of hardships ahead, but because I don't know. And my imagination is an active foe to peace. I have not since experienced the intense juxtaposition of grief and joy that came in 2004. But I haven't forgotten it either.

My friend who just lost her husband also wrote these words:
"I'm not sure what God's plans are, but I hold tight knowing that ALL things He does are good, and in all things He brings glory to His name! I take heart in knowing that C is with his maker and gets to worship Him face to face for eternity! This life here on earth is not the only life for us. Trust in the Lord with all of your heart and believe in Him and you will have the same eternity! To God be the glory in all things!"

I thank God for her steadfast faith. And I cry.

She reminds me, here on the eve of a new year, that now, and always, is the time for this: complete trust in my Almighty God, in whatever season and time he places me. 

There is a part of me that wants to pray, or demand, that God give seasons of gladness this year. But, as he works to transform me, the prayer I really want answered is that I will echo the words of Job, no matter the season:
"The Lord gave, and the Lord has taken away; blessed be the name of the Lord."
Pray with me for my friend. Now is a time for this.

Tuesday, December 6, 2016

That's My Brother

J had his first ever middle school band concert! Simple songs, squeaking reeds, off-tempo drums, but oh so fun! I know it may sound torturous, but I really loved it!

We were slightly amused by the flock of parents who rushed to the front to take pics of the 6th grade band. The 7th and 8th graders had nary a photographer. I guess once you get past 6th grade, the middle school bands are old news!

Big C sat through the whole thing...half the time his fingers were in his ears, but I was so proud of him for making it through the entire concert!

Afterwards, Matt's parents and Jenna came over for pop and ice cream. Apparently treats after concerts is a tradition in Matt's family from days gone by, and now it's continuing with the next generation!
Aunt Jenna and the trumpet player
Before J went to bed, I asked him if the concert was fun. "Yes," he said, "it was fun." But then he added, "I was sad, too. Some of the kids were making fun of Big C and the noises he was making. I didn't like that."

It's true. While Big C was mostly quiet during the concert, he did have several moments where he made noises, some from excitement and some from exasperation when the band director talked too long! I had hardly noticed. Sometimes I forget how Big C's loud exclamations might sound to people who aren't used to them.

"What did you do?" I asked J.

"I said, 'That's my brother.' And then they stopped."
There is so much love in that simple statement - "That's my brother."

J could have pretended he didn't hear what the kids were saying. No one could really see who was producing the noises. He didn't have to claim the kid making funny sounds. But J didn't want kids making fun of his brother, even if Big C was oblivious to it all.

And then J added one more thing before going to bed. "Big C helps me," he said. "He helps me know who my true friends are."

How did my 6th grader get so wise?
 

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