Slice of Life

I bought my niece a book

 

I bought my niece a book.

Buying her a book is not a new thing or a thing worthy of a blog post.  What is worthy of a blog post is that my niece is not like everyone else.

Her ribs are flared out instead of following the normal path.  Her body moves a bit differently than everyone else’s.  She has a “giddy up in her hitch” as we say. Her body can’t tolerate as much action as the rest of us can.

A lot more is physically different about her than every other 4-year-old.

When I see my niece, I see a beautiful child who works harder, endures pain longer, laughs louder, smiles brighter, and is just full of more life than a lot of adults I know.

I see a little girl who runs as hard as she can to keep up with others – especially my boys. A little girl who dances beautifully as her ribs and legs flare a bit differently in her leotard. A little girl who also acknowledges when she reaches her limits and needs to rest or use a stroller. I see a little girl who endures medical tests, treatments, surgeries, and doctors. I see a little girl who can inspire so many people – if they just allow themselves to see beyond her age.

She and her younger sister have a long road ahead of them.  They both have been diagnosed with Morquio Syndrome/MPS IV Type A.

My sister explains it best in that the body is missing or does not produce enough of a specific enzyme. That missing enzyme is what breaks down the natural long sugars that the body produces. The unbroken down long sugars build up in the body causing skeletal abnormalities and can lead to problems with vision, hearing, and the heart. It is a progressive condition with no current cure. Currently, clinical trials are underway for an enzyme replacement therapy. My nieces are in the process of becoming a part of these clinical trials.

The book I bought for my niece is  Willow by Denise Brennan Nelson and Rosemarie Brennan.

I first noticed the book because of the title. It is my niece’s first name.  Willow.

I bought the book because the reviews and description said the phrase “except Willow” occurs throughout the book.  I wasn’t sure what to fully expect, and I had the book shipped to my house first.  That way I could read it and “approve” it for my  niece’s sister’s sake.

This simple book left me with tears in my eyes.  I won’t share with you the details of the book. I wouldn’t want to ruin it for you!

My prayer is that as Willow goes through life and hears things such as “except Willow” she will have an even greater impact than the heroine in this story.

So Willow, keep being “except Willow.”  Because you are special. You are inspiring. You are brave.  You are resilient. You are my niece!

I’m posting every Tuesday as part of the weekly Slice of Life over at Two Writing Teachers.

Inspiration Paused

 

This week I am lacking inspiration for writing.  Some weeks and days I can see it all around me. A story here. A story there. This week, I don’t see inspiration at all.  Where did it go?

Maybe it is the fact that all my paid writing assignments are done and submitted.  Maybe it is the fact that we are wrapping up my son’s school year with his final assessment completed yesterday.  Maybe it is the fact that I’m letting my brain rest.

Maybe I just don’t want to see the inspiration this week.  All my other responsibilities call my name this week.  And I’m not talking about running to the grocery store or bank. Instead my calendar is full of baseball games, final programs, board meetings and escaping away.

Regardless, it is nice to let my brain put a pause to the inspiration I am choosing to ignore around me.  I think I’ll hit the unpause button next week!

I’m posting every Tuesday as part of the weekly Slice of Life over at Two Writing Teachers.

Homework and Life

 

My son doesn’t understand what it is like to have homework.

He is seven – almost eight – and finishing up second grade.

He attends a virtual charter school where we very much function as a homeschooling family.

He knows that school work goes until it is done.

He understands working ahead to take a day off.

He understands that some subjects take longer than others.

He doesn’t understand why his friends can’t play in the evening because of homework.

I told him the other day: “Homework just gets in the way of life.”

Now he is repeating it to me about everything.

“Vision therapy just gets in the way of life” is his favorite one to say right now.

And now I must interrupt his break between lessons (as I write this on Monday afternoon).

Because we don’t want homework tonight.

Homework just gets in the way of life!

I’m posting every Tuesday as part of the weekly Slice of Life over at Two Writing Teachers.

love of music

 

This weekend we interrupted our baseball life for some music.

My oldest son, Kory and I went  to a community band concert. We didn’t randomly pick it. Kory’s former piano teacher plays in the horn section and had a featured piano solo. Since we hadn’t seen her for a few months and she was hoping for some familiar faces in the crowd, Kory and I decided to drive the hour or so to see her concert.

It was amazing. As I sat there with my son listening to the various parts, I had so many things rush through my head.  All the piano practicing I did through 10 plus years of lessons. Accompanying school choirs and ensembles. Playing the clarinet and oboe. The music appreciation classes focusing on concert etiquette. The concerts my parents and grandparents attended to listen to me play. The early morning band class at college that I only did for one semester. That first college concert when I looked out into the crowd and realized my parents, siblings and grandparents weren’t there anymore to watch me because I was 12 hours from home. It just wasn’t worth it when it had nothing to do with my major. I stopped playing clarinet. I stopped playing oboe. I only tinkered on the piano.

As I  sat in the middle school auditorium turned concert hall, I felt my eyes tear up at the beauty of the notes and rhythms. The beauty that someone created this music from nothing. I thought of my grandfather’s explanation of tears as a little boy when he heard the music in church, “sometimes the music just touches me.” It was touching me.

The concert was a perfect time to snuggle with my son who had kicked off his flip flops and curled up in his chair.  We listened to the music together. We tapped out the beats and rhythms. We softly whispered how pieces sounded like they belonged on an episode of  Tom and Jerry cartoons or featured in a video game. I whispered explanations on why the lady with the black straight horn came out to tune everyone up before the concert started. I whispered how to tell when the conductor was done and we could clap. This is one of the reasons I love to homeschool. He wasn’t learning about music in a classroom with a textbook. He was learning it in real life.

I watched the lady next to me close her eyes and sway to the music. I watched the boy in front of my gently play with his mother’s hair. I saw the lady in the row in front of me win a cash prize in the concert’s raffle.  I saw her generously and discreetly decline the winnings and instead hand them over to the featured music organization raising funds that night.  I saw the organization’s spokes lady gush with “thank you. thank you. thank you.”

I saw my son close his eyes and absorb the music through the night. “It is okay if you feel sleepy. The music is relaxing, isn’t it,” I told him. I felt him snuggled up next to me and tap out the beat. I watched him clap at the right times. I watched him pretend he was playing the horn.

“Mommy, I really liked that,” I heard him say at the end.

“Me too, Kory. Me too,” I responded back.

That night he didn’t beg for more snuggles at bedtime. He didn’t tell me his snuggle-meter was only registering to his ankles.

We got our snuggles in earlier as we both further developed our love of music.

I’m posting every Tuesday as part of the weekly Slice of Life over at Two Writing Teachers.

Happy Birthday

 

Happy birthday to my youngest today. He turns four.

Oh the memories of those first few days of his life. The memories he has helped me create since then. And today on his birthday, we will make more memories.

We are getting our “mud boots” ready to search for tadpoles and frogs with my real-life friend Pamela.

Later this evening, we will celebrate as a family by going bowling.

Today, we celebrate Cade with frogs and bowling balls.

I love you Cade, and happy birthday!

I’m posting every Tuesday as part of the weekly Slice of Life over at Two Writing Teachers

Poetry, my son, a cow and the moon

 

I was supposed to teach my son about poetry.  The lesson plan had the poems to use.  I glanced at them and thought they looked boring. If you are new to my blog, you may have missed an earlier blog post of mine. Basically, I don’t like poetry, much. I’m getting better at that though.

Instead of using the “boring” poems from the lesson, I decided to use my real-life friend, Maria’s poems. She has been writing some great ones this past month. I thought if I used poems by someone my son knows, he (and I) might enjoy the poetry even more.

Instead, my son surprised me. I didn’t teach from the poems in the lessons. I didn’t teach from Maria’s poems; although, we will glance at her poems later today.  My son, instead, taught me about poems.

“Mommy, Can you listen to my story?” he asked me as I was cleaning up the kitchen between lessons.

“Sure. Tell me your story,” I said while I wiped down the counter.

And that is when he went off with a poem. Creating one line at a time.  A cow. A moon. He giggled while sharing his words with me.

“Kory,I really like that, but is it a story or a poem?”

“A poem, mommy.”

Here is Kory’s poem – as he told it to me a second time.  It is a bit different from the first original piece that he shared with me, but it is close to the original.  It’s all Kory.

The cow jumped over the moon (that is the title, mommy)

I saw a cow jump over the moon.

I hope it’s not a hound.

I hope I’m not a clown.

I wonder what I would feel like if I was a cow.

I watched the cow jump over the moon.

I bring out my bucket and I go under the moon.

And I think the cow will squirt milk into this bucket.

But instead he put rocks in my bucket.

I looked at the cow and he said moo.

I wonder how he can jump that high.

I always wonder that whenever daddy throws me in the water.

And I wonder what I would be like if I was a cow.

What would you feel like?

—

Here is Kory’s drawing to go with his poem. I’ll also be sharing your comments with my son.

I’m posting every Tuesday as part of the weekly Slice of Life over at Two Writing Teachers

Easter – Spring Break Recap Part2

 

Easter egg hunts and ham. We had the traditional Easter fare in an untraditional way – on the beach and at a resort.

Easter morning started with an egg hunt for the boys in the resort lobby. When we called the front desk the day before, we were told the hunt was at 10 am. When we made it to the lobby a bit before 10, we were told the Easter bunny wasn’t showing up until 10:30, so we wandered outside near the lobby area. Not all families did. Some of them went back to their rooms.

When the hunt started, it was over in a flash. It is amazing how quickly kids can find the “hidden” eggs. As we were admiring the boys’ stash of plastic eggs full of sugary things, in walked a family with two kids. They were only a few minutes late, but that was all it took for the Easter egg hunt – a few moments. I later found out they had arrived at the earlier time to only go back to their room until the hunt started.

The two kids looked devastated. They had missed the hunt. I leaned over to the boys and whispered, “I want each of you to give an egg to those little kids who missed the hunt.”

Kory immediately gave one of his biggest eggs to the little girl around his age. Cade wasn’t as willing to part with an egg, but he eventually gave one to the little boy.

I heard the kids and the father say, thank you. I heard the father say to his kids, see what happens when you don’t get somewhere on time. We were both teaching our kids life lessons. He was teaching them to be responsible with time. I was teaching mine to give out of our excess.

But the best part. Later that day we ran into the family again. You should have seen the little girl look at Kory. I know that look. I have given that look as a little girl admiring boys on vacation. Oh the silly memories that flashed before my eyes when I saw her eyes. And no, I’m not going to share them here. 😉

She said hi to him. She told her mom, that is the boy who game me the egg. Kory bashfully said hi back. Oh, he had become some little girl’s vacation memory, which clearly embarassed him when I said something to him about it later.

The rest of our Easter was full of beach time where we saw a church having a water baptism. It included a full ham meal courtesy of take out from Bob Evans – along with a great aluminum container we used the rest of the week when we grilled. The day also included an outdoor Easter egg hunt my parents had for the boys.

It was an untraditional Easter at the beach – the perfect way to celebrate the day!

Spring break

 

Today my slice is short and simple.

We are on spring break this week, and we are spending time together as a family. Less interruptions. Less facebook and twitter. Less scheduled activities. No formal school work, just learning through life this week. A week of fun and family.

And I will fill you in on it next week because this week, my family is waiting for me to finish this so we can have fun together.

Yeah! I made it through a month of posting through the March Slice of Life Challenge.  I’m now planning on posting every Tuesday as part of the weekly Slice of Life over at Two Writing Teachers.

The Waiting Room

 

Lately I’ve been spending a lot of time in waiting rooms as my son has his ongoing vision therapy sessions.  I’ve always liked to people watch, but somehow this hour of sitting causes me to watch even more.  Today this is what I saw while I waited and watched news coverage on the sole television in the room.

The lady who fell asleep in the chair with all the noise.  How does she do that?  I would be afraid I would drool, talk in my sleep, or kick my leg. She reminds me of the man who slept in a chair  last week in this waiting room. How do they do it?

The mother and her two daughters.  The mom yells for the one daughter to shut up. The other daughter yells at her to turn off her iPod.  The older daughter and the mom seem to have more of a connection than the other daughter.  I wonder what their life is like at home. She barely makes eye contact with the assistant when her name is called and she mutters a hello.

The lady who was called Mrs. so-and-so.  She answers slowly and stands up.  The assistant asks, “Did I pronounce that correctly?”  “Yes,” she slowly answers.  “But it is Miss not Mrs,” she continues.   I wonder does she cringe when that happens. I thought I heard her sigh or maybe that was me sighing for her.  Does she get that alot?  Was she ever close to being a Mrs? Does she want to be a Mrs.?  Has she ever been in love?

Simply people in the waiting room. Yet they are so much more than that.

Yeah! I made it through a month of posting through the March Slice of Life Challenge.  I’m now planning on posting every Tuesday as part of the weekly Slice of Life over at Two Writing Teachers.