Showing posts with label being Trevy's mommy. Show all posts
Showing posts with label being Trevy's mommy. Show all posts

Thursday, July 10, 2014

sharing happy

 

 

I have often felt a guilty pang sharing the happy moments.

 

Sharing Happy 1

 

Because of Trevor’s medical challenges I am very sensitive to those that are living some of the darkest moments of their lives right.this.very.moment.

 

Sharing Happy 2

 

I never want anyone to feel like I’m rubbing our “happy” in.

 

If that makes sense.

 

Sharing Happy 3

 

It also drives me bonkers that people see a snap-shot in time and so easily believe it represents the whole.

 

Trevor has many, many happy moments.

 

I cherish them deeply. He has taught me how to appreciate glimpses of beauty in a way that would never have been possible without him.

 

Sharing Happy 4

 

But our happy is always mingled with tragedy.

 

Brokenness.

 

In so many of those happy moments we see glimpses of the boy he could have been…

 

and our hearts smile-grieve.

 

And long deeply for the day when Healing washes over him…and us all.

 

Sharing Happy 5

 

Snapshots…

 

coupled with distorted perceptions…

 

could never share the whole story.

 

But nothing other than living IN the story can ever fully capture it.

 

my cuties

 

This past year in particular…I have been overwhelmingly drawn to embracing the happy moments. Cherishing them even more. And sharing them too.

 

Maybe it’s because Trevor could have died last year. Indeed, his sister still has nightmares that he did. So scary was that night.

 

Maybe it’s because we’ve faced some other real health scares this year as well. The kind that effect Trevor but don’t belong to him.

 

Sharing Happy 7

 

Maybe it’s because this world is so saturated with sadness and groady and bitterness on every side that sharing our happy moments with each other isn’t only sweet…

 

Sharing Happy 6

 

it’s necessary!

 

…danielle

 

 

These thoughts have been swirling in my heart for a while. Sharing them today was inspired by this post. Which you should totally read!

Monday, January 27, 2014

A for creativity

 

 

“Watch! Puppet! Heh-whooooa!”

 

 

This is what he said as he stuck a hand up his shirt and pretended it was a puppet saying "hello".

 

 

There is NO limit to his creativity when it comes to getting out of ABA lessons.

 

…danielle

Monday, December 2, 2013

randomnings

 

I (occasionally) *heart* Speech Delay


Like when Trevy calls his high tops high heels.

 

*****

 

Bristel and I had some alone time in the car after dropping Tobin off at his engineering class. The conversation inevitably went to romance. Because clearly that's what 8 year old girls think about.

 


Bristel randomly broke the silence with a sigh: Sometimes I think I may never find a husband.
Me: Well, honey, it's better to wait for the right guy rather than settle for the wrong one.
Bristel: That's a good point. (pause and then giggle) Daddy looked so silly in those circle glasses he used to wear! Did you think he looked silly even though you married him?
Me: They were pretty silly! Buuuuuuut...your dad made me laugh. So that balanced that out.
Bristel: I have really high expectations, I think.
Me after choking on the fact that she's EIGHT: Well, what are your top five expectations?
Bristel: He has to love Trevor. He has to love God. He has to love me. And he HAS to love my sense of humor! Also, he needs to be funny too.

 

I thought that was a pretty good list.

 

*****

 

Evidently a 5 day vacation just wasn't cutting it for Trevor. When it was time to go to school he flopped on Bristel's bed and started incessantly crying, "Not enough time!!!"

 

*****

 

Trevor was chasing the dog around with a pair of play-doh scissors saying, "I doctor! I doctor!"

She was NOT amused. Even if the rest of us were.

 

*****

 

Jonathan schlepped our tree up from the basement and is in the process of trying to get it all set up. Trevor has been fascinated.

He just came up to me and asked, "Little People?"

We have a Little People nativity set that we bring out with all of our Christmas gear. He hasn't seen that thing in a year!!!

That boy has an amazing memory!

 

*****

 

I just told Trevy to open his mouth and when he obeyed I surprised him by spraying whipped cream into it.

 


The face he made was PRICELESS!

 


Now he's following me around with his mouth hanging open like a little baby bird.

 

*****

 

Bristel loves FaceTiming her friend, Jamie. Trevor didn't quite catch her name once and called her "James" instead of Jamie on accident. It was cute but the girls tried to correct him. Big mistake. He thinks it's funny when he says things wrong and it annoys people. And when you correct him it only makes it that much more fun.

 


So now, every time Bristel is on FaceTime he's always hollering, JAAAAAMES! And Bristel always hollers back, "IT'S NOOOOOT JAAAAAAMES!"

 


This situation happens dozens of times a day and always ends in Trevor laughing hysterically. LOL

 

*****

 

Random Bristel

 


I'd rather be bitten by a vampire than be surrounded by spiders.

 

 

danielle

Wednesday, June 12, 2013

missing badges, parenting fails and forgiveness

 

 

She puts on such a brave face.

 

 

Such a sweet, sensitive heart she has.  Neither of my boys seem to posses that thing that makes you sensitive of others.  But she has it in spades.  She’s always thinking of others.  Always ready to cuddle.  To nurture.  To love.

 

 

But I knew.  I knew behind her big blue eyes and dimpled smile hid a broken heart.  But she was thinking of me and trying desperately not to make me sad.  She hates to see me sad.  And so she smiled even though I had failed her big time.  I felt the guilt and grief and sadness climb up my throat until I had to catch her and make her see how sorry I was.  Apologize on my knees.  Until she knew to her toes that I meant it deeply.  Until any possible root of bitterness could be plucked from the soil of her tender heart.  To God, I don’t want her to grow bitter with me.  With him. 

 

 

Having a child with significant special needs impacts the whole family.

 

 

And last Saturday, at her American Heritage Girls ceremony, she missed out on receiving extra badges as a direct result of her brother’s care sapping her mother’s energy.

 

 

It was not her fault.  She worked hard for those badges.  She earned them.

 

 

I should have ordered them.

 

 

But somehow…in all the chaos of these last few months…I missed the order placement period.  And she missed out.

 

 

The thing is…

 

 

she had already missed out before.  I vividly remember promising her at the middle of the year ceremony that next time I would get it right.  Next time she would have those badges that she worked towards.  I would NOT let her down.

 

 

Talk about a parenting fail.

 

 

I pulled her aside and with tears running down my cheeks begged her to forgive me.  She promised it was okay.  That she understood.  Her blond hair and blue eyes looked so innocent and sweet.  But she’s eight.  Can an eight year old heart really understand how much energy leaks out of me every time her brother has a seizure or an IEP meeting?  How half way though the day…I’m toast.  And ready to just curl up in bed with a book.  It feels like I’m always tired anymore.  Ordering badges are the last thing on my mind.  Can she understand that and be okay with me pouring myself into finding new treatment options and talking to specialists to help her brother…but forgetting to order her badges?  I cried because my heart broke for her.  I cried because sometimes my heart groans for the day of Redemption fiercely.  I cried because I’m mad at myself.  Always, I’m reminding myself that I’m a mom of more than one.  And yet that one takes so much energy to parent.  I hugged her hard because I wanted to squeeze any doubts that she’s not as important to me as he is right out of her.  I didn’t want to let her go because I’m afraid that someday she won’t want to come back.  That she’ll look at my choices and judge them as partial.  I fear that because I know my own heart so often is bent towards bitterness.  And I can’t bear the thought.

 

 

So I hugged her tighter.  Until she said, “um, mom, I can’t breath” with a little laugh.  Which made me laugh too.  Because not only does she have the gift of compassion…she also has the gift of comedy.  Her voice was dead pan hilarious.  Against every fiber of my being, I pried my arms open and let her run off with her little friends.

 

 

I worry about her tender heart often…

 

 

But I have hope too.  I believe in Providence.  I know that we are not a family by chance.  We were chosen to be together by a loving God for His glory.  And I believe that He’s using Trevy shape all of our hearts to look more like His.  Missed badges and all.

 

 

It also helps when I read thoughts of older special siblings like this one…

 

 

“growing up with a special needs sibling equips you with a unique sense of humor, a special ability to marvel at the small beauties in life, and a boatload of patience!”  -- Brittany, SpecialSiblings.com

 

 

…danielle

Wednesday, May 22, 2013

our day in pictures

 

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Thanks to a tip from another homeschool mom we’ve been starting our mornings each day with CNN’s Student News.  Bristel didn’t want her picture taken because she still had bedhead.

Today’s episode covered the weather in OK.  The kids and I took some time to pray together.  It’s always precious praying with them…

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This (above) is my Morning Meeting Basket. Our morning meetings are a time to connect & review before the day begins. Some things I have in my basket are: mini-white boards for Scripture review or just review games in general; colored whiteboard markers; American Flag for the Pledge; Brain Quest cards for fun; Binder with odds n’ ends; Index card binder with hand written things to review; Random other review-ish things.  I like to have a theme for each day of the week…but now that summer is closing in we’re all ready to just be done.  So I’ve just been flying by the seat of my pants.

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Even though summer is comin’…I finally got my hands on a copy of Sue Patrick’s book this week.  I LOVE the workbox system on so many levels and reading through the book re-energized me again.

**her e-book is half priced right now**

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So I spent the weekend cleaning out my school closet and creating new workbox tags for the kids.

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Including a Question Mark Flag which they can pop into play-doh whenever they have a question for me rather than just leaving their seats all.the.time.

I have promised to check-in frequently.

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And so far it’s working WONDERFULLY!

Other than Toby whistling and/or loudly drumming on the table for my attention.  That’s plucking me nerves…I may have to limit the number of questions allowed per day like Sue Patrick recommends!

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Bristel thought her popsicle stick was too boring so she added some bling using left-over gold pieces from a mosaic kit.  Her girly girl styles makes me smile!

Toby wasn’t thrilled that she be-dazzled his too and made us remove them all!  LOL

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My new love – repositionable spray glue!  I found mine at Michael’s for around eight bucks.

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I sprayed it on poster board to make a Latin vocab review game.  I’ll be using it for LOTS of review games since we can just keep sticking and unsticking!

I also used it instead of velcro to make the kids workbox cards.  I’m hoping it works out because I’m a fan of LESS bulk!

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The kids have both been daily doing Xtra Math, a free math fact practice website, for the past week and I’m definitely seeing improvement.

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All my online reading program memberships have expired, so I have Bristel reviewing phonics with this nifty McGuffey app.  I’m using the lite version right now but I’m really REALLY liking this app for her AND for Trevy!  I may just have to purchase the full thing…

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I couldn’t resist sharing my fan set-up.  It was stinkin’ hot yesterday…and we have these really weird shaped windows that are too small for regular window fans but too big for smaller fans.  Enter Duct Tape: the everything fixer!

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On a super personal note, Life has been really stressful lately. 

Trevor’s seizures have been crazy.  He’s been having drug interactions that could KILL him and HAVE caused some really scary episodes of balance and consciousness loss.  So we’ve been fiddling with meds…never fun.  I hate the med-merry-go-round.  But it’s a necessary evil when your child has a form of catastrophic epilepsy.  We almost had an admission…also never fun.  Even when it’s canceled.  We were packed and ready to head out the door when the neuro called to change plans on us…for a valid reason.  But we were already so emotionally invested that we still had to deal with a touch of “hospital hangover”.  And it’s just been chewing up our hearts.  The way life with a chronically sick child does.

This has caused me to actively search for ways to add more PEACE.

Some days that means “unschooling”.  Because I can’t gather my wits about me.

Some days it means staying in my favorite pink sweat pants from dawn til’ dusk.  Don’t you teach better in sweats?!

Some days it means spending awhile in the Word and prayer.  My Mother’s Day zero gravity chair is a great place for that! 

Today it was the Instrumental Praise station on Pandora.  The kids feel like the music is too sad.  But for me…it’s peaceful!  And I need more PEACE!  I let them change the station on breaks…Toby is a huge fan of the Newsboys station.

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On the subject of Peace.  And the lack thereof.  It seems like the kids attitudes go to pot at exactly the wrong time.  I’m sure it’s partly because they feel the stress oozing from their parents.  And that’s how they deal.  But they’ve been at each other’s throats for weeks…and I’ve done more yelling and crying and well, just bad parenting moments than I care to confess.  And it’s just been not working on any level.

So another peace-chasing thing I’m trying is having a “Scripture Station” at the kitchen island every morning.

My goal is less yelling and more (penmanship, grammar &) character building.  When I feel my blood pressure elevating…I (mostly) send them to copy pre-chosen verses.

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Both of my kids are really LOVING FreePianoLessons4Kids.  They think Mr. Hoffman is a great teacher and he must be because he’s keeping them engaged!

They also take lessons with Grams.  But it’s been hard to fit them in lately so I’ve been supplementing with this program.

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Bristel’s Language is Abeka this year.  I’ve been letting her say some things out loud to me.  If she makes a mistake she’ll have to write it out for extra practice.  It’s been a great motivator for her to try and remember her phonics rules!  Oh and I’ve black board painted just about every school surface in our house too!  It’s SO handy.  See the bank she and I worked on before she wrote her paragraph?  I highly recommend going a little blackboard paint crazy every now and then.  It’ll make you feel so “teacher-y”.

 

 

…danielle

Friday, May 10, 2013

a day in the life (homeschool picture marathon style)

 

 

I thought it would be fun to take pictures randomly through one of our days this week.  These pictures don’t reflect everything that happened during our day.  Just the stuff that made me smile.

 

Bristel with her “Abeka Academy” class for Math and Language Arts.

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Toby sweatin’ to Saxon 7/6.

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Bristel is such a SLOB with her desk during our school day!  This is how she left it during her break time.

 

My grading bin is there because I sit beside her and look over their turned in work.  She pays better attention to the videos if I’m sitting with her.

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Oh the irony that his space is neater!

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Toby is looooooving Easy Peasy All in One Homeschool for his English.  In fact, next year we’ll be using EP a lot more. 

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I had these set out to laminate.  Um.  Yeah…they’re still sitting on the table where I left them a few days ago.

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Bristel was kind enough to warn everyone that there was a hornet in the mudroom.

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I was astonished to find her bike neatly propped up!  She loooooves riding her bike during her break times but usually just drops it any ol’ place in the yard.

I didn’t catch a picture but Toby is often found working on his pitching finesse or shooting hoops during his break times.

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She also decided to start a garden.  I’m guessing she must have been inspired by peeking at some of my recent pinning?

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Notice the browning de-seeded apple below.  I couldn’t help but notice where she found the seeds.  She thinks she’s growing me some apple trees in the backyard. 

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We discovered that Trevy got into her school work.

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I guess he’s not a fan of Math.  In love

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She had a sweet spirit about it though and laughed while she erased his scribbles.

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Probably because she knew I was going to find her hidden message on our chore chalkboard.  Smile with tongue out

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danielle

Tuesday, May 7, 2013

how homeschoolers do teacher appreciation

 

 

Unexpected letters left on the teacher’s desk…

 

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Love notes hidden in Math Tests…

 

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Offering to entertain the littlest so mom can relax in her early Mother’s Day zero gravity chair.

 

buddies Toby 11 Trevy 5

 

 

Okay…so maybe I had to FORCE him to entertain the little guy for me.  But at least I got to grab some Vit D for a few minutes!  Smile with tongue out

 

 

…danielle

Wednesday, March 27, 2013

from the bottom of my purplicious heart

 

 

A huge thank you to EVERYONE who joined us for Purple Day yesterday.


 

 

I know that every cause has a color. And a day. And a ribbon.

 

 


I know it can be cheesy.

 

 


I'm sure there are those who think it's all silly and pointless.

 

 


But from a battle weary mom in the seizure saturated trenches...even if an extra penny isn't raised towards finding a cure. Even if the white house never does go purple for our loved ones who battle this monster. Even if it IS cheesy and silly.

 

 


I need that breath of fresh air.  That boost of encouragement.  And it means so very much to ME (and others). To see Trevy's face light up with joy when he sees someone in purple and in his own way understands it’s for HIM and for me to feel supported and accepted and advocated WITH instead of alone.

 

 


It's powerful.

 

 


And I thank you from the bottom of my purplicious heart.

 

 

…danielle

 

 

ps.  There is still time to join our linky party!  It’s a great way to heart connect with other seizure families!

Wednesday, March 20, 2013

you might be a seizure mommy if…

 

 

you lift the “no coloring your hair until you’re 37” ban when your 8 year old daughter begs for a purple streak to support her brother!

 

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and you like it so much that you get one too!

 

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Be sure to check out Heather’s epilepsy fact of the day!

 

 

…danielle