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August, 2013 | Everyday Childhood

Archives for August 2013

Love Laminated

Memories. Mine seem to be stuck on my iPhone. Attached to my Instagram. Every now and then… I scroll through my photos. It’s only then that I wish I had them with me. Physically. In my hands.

Oh… I’ve printed them off at home. But it’s not the same. And my photo printer… blah.

Then… I was sent a Fellowes Saturn2 95 laminator to write about. (I wasn’t monetarily compensated for this post, but I can report that I am now officially addicted to laminating things!)

Opening up the Fellowes Saturn2 95 motivated me to find a way to get my memories off of my phone and onto paper! So… I did a little Google search and I discovered an app through Walgreens. It’s called Printicular on iPhone. (I’d love to know if it’s available on Droid… let me know.) The app allowed me to order prints from my camera roll and my Instagram! YAY!

I started thinking of the perfect project to start with and immediately… I thought of a creating a mini album! I love mini albums… they’re so easy to make and laminating it would allow the album to last a long time.

I picked up my prints at my nearby Walgreens and excitedly hurried home. It was so thrilling to peek through all my pictures! It was as if I was seeing them for the first time! I used my Spellbinders Grand Calibur die cutting machine to cut some photo pages into a cute shape (Labels One) and I wrote sweet notes on some of the pages. Once I had the pages how I wanted them… I put them into Fellowes photo sized lamination pockets and fed them through the machine. It was so quiet! I had never used a home laminator before and I was totally surprised at how easy it really was!

Fellowes Saturn2 95

After I laminated all the pages… I used a paper cutter to trim off a bit and then punched holes for the page rings. It really turned out to be a verysweet book. I’d show you the whole thing… but it’s actually a very personal gift for a very special person. And that… is another story that I’m not ready to share. Yet. xo

You should know a few things about the Fellowes Saturn2 95 laminator:

  • Fellowes’ Saturn2 95 laminator is the ultimate tool for back-to-school because it helps preserve important documents, like schedules, calendars, flash cards, charts, certificates, and more. Check out the Idea Center for inspiration and project ideas!
  • Fellowes Saturn2 95 is available at Staples.com and Staples for a suggested retail price of $159.99. Fellowes offers a wide range of laminators to suit a variety of needs with products also available at WalMart and Amazon.com.
  • The Saturn2 95 is the perfect machine for moms and teachers because it combines exclusive technologies and features:

o   HeatGuard™ Technology: Double-walled insulation keeps heat inside so the laminator is comfortable to touch, making it safe for homes and classrooms with children.

o   Advanced Temperature Control: Hot and cold laminating capabilities ensure consistent, smooth results every time.

o   Release Lever: Permits easy removal or re-centering of stalled pouches to prevent jams.

What would you use a personal laminator for? I’d love to hear! And… aren’t you totally motivated to print out your photos from your phone now? Mmm hmm… I knew you would be. :) In case I haven’t told you lately… I really appreciate all of you. Really. xo

Back To School

The twins entered first grade this year.  They are in separate classrooms.  I am all for this.  Even though they are fraternal twins, separating them at school feels like the right choice–I hate to keep them away from each others’ best friend all day, but to academically thrive and achieve on their own and not as a team is something that needs to happen and something I look forward to enjoying.

But.

They come home from school and we empty their homework folders.  The house gets loud, the phone rings, I try to keep stacks of homework worksheets straight but guess what?  I’m just not that good.  Homework gets piled up into a frustrating mix of assignments and as I sort through them I can’t figure out which worksheet belongs to which twin.

My twins are not the first twins to attend school.  I’m sure lots of twins attend school.  I don’t want to reinvent the wheel or anything, but maybe teachers could arrange for the students to write their name on their papers before they leave the classroom.  They’ve had just one week of homework and I’ve already had one kid finish the other kid’s homework just so that I could check off a to-do.  I’m trying, but my trying is trickier than just writing their names on homework worksheets.

I don’t know.  I’m just frustrated.  NAMES ON PAPERS PLEASE.  It’s all I ask.

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

Sneaky Kid

Last night at bedtime:

Six year old daughter:  Mom, I know your real name.  It’s Cassandra.

Me, tucking her into bed:  Welp, you’ve uncovered my big secret.  Yes, that’s my name.

Daughter:  We won’t tell anyone else.  Just you and me know this secret.

Daughter:  You should tell me your Amazon password and your iTunes password.  I will keep it very secret when you tell me.

Me, pretending to contemplate:  I don’t think so.  I wouldn’t want you to use my password to buy things in secret.

Daughter:  You just wait.  Nobody can resist this.

And then she smiled so huge that I thought her lips were going to crack, and I couldn’t figure out where she learned such salesmanship.

And then I maintained my perfect record of not giving her my passwords.

ESPN My Wish part 2/2

By now my son’s My Wish segment has already aired on TV, but I still have to wake up and have some coffee and find the link for you.  When I get to that, you’ll find it here.  ESPN.com article here.

Kyle’s Wish weekend was pretty awesome.   He knows and admires every Dbacks player, and he got to meet and talk with almost all of them that weekend.  And each subsequent occasion where he has found himself anywhere close to the team, the guys seek him out to say hi, sign more autographs, and give him the batting gloves off their hands.  They have spoiled my son rotten!

If you are a Dbacks fan, you should be so proud of your team after watching Kyle’s My Wish.  If you weren’t a Dbacks fan before, you might be one by now.  I can’t say enough about this organization.  And I don’t have to–you’ve seen it.  Everyone from Derrick Hall to the players to the PR team to the Chase Field security and staff routinely bend over backwards for Kyle and certainly went above and beyond as they granted Kyle’s Make A Wish earlier this year.  Kyle gives back, too–he cheers the team on as he either attends in person or watches every game on television.  From the bullpen to the infielders, you guys make Kyle’s day almost every day just by playing the game.

In addition to what you saw in his My Wish segment, Kyle’s Wish weekend included:

*an enormous suite at the Hyatt downtown, resplendent with baseball themed cupcakes and a Dbacks bobble-head (JJ Putz!) waiting for Kyle in our room.

*extensive batting practice with Aar0n Hill and Paul Goldschmidt at the Futures Field at Chase.

*drag racing mascot Baxter so far around the concourse that the cameras lost track of them and we all had to sort of wait around for them to catch back up with us.

*Pitcher JJ Putz escorting him to his locker and giving him a clubhouse tour.

*JJ Putz playing C0nnect 4 with my daughters in the locker room.

*Heath Bell chilling in the dugout with our oldest daughter, Jenna, showing her how to connect our iPad to the Chase Field wifi.

*a team meeting on the field and a team photo.

*Pitcher Patrick Corbin introducing himself, “Hi, my name is Patrick.”

*Rockie’s OF Ryan Wheeler stopped by to say hi–one of Kyle’s favorite former Dbacks players, and a great guy overall.

*a tour of the radio broadcast booth

*Kyle threw the first pitch in front of 24,000 people

It was an incredible experience for Kyle.  I could never thank Make A Wish, ESPN, Derrick Hall, Luis Gonzalez, Greg Schulte, Adam Eaton, JJ Putz, Willie, Martin, Aaron—you have positively spoiled my son with attention and for that I thank you.  And to the rest of the Dbacks, old or new: he is watching.   “Kubel is due for a big hit.”  “Brandon McCarthy is taller than you, Mom.”  “There goes Adam.  He’s a fast runner.”  “Does Parra ever drop a fly ball?”  “It’s Goldy Goldy gone!”  “Tomorrow is free taco day because we won!”

Diamondbacks vs Rockies Diamondbacks vs Rockies D-backs vs Rockeis Diamondbacks vs Rockies Diamondbacks vs Rockies MaW2 MAW4 MAW5 MaW6 MaW7 MaW8 MaW9 MaW9a MaW9b MaW9c

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Thank you for everything, Dbacks.  Now the push to the playoffs!

Follow @SportsCenter on Twitter and follow the conversation by searching #MyWish!

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

 

ESPN My Wish (part 1/2)

My kid loves baseball–like, really loves baseball.  He loves playing baseball more than he enjoys sitting on the sidelines watching others play, but usually he will take what he can get and loves to watch an MLB game on television if he doesn’t have his own game to play that day.
One difference between Kyle and many other baseball-obsessed young boys is that the baseball he plays is on a special field made not of grass and dirt but of a wheelchair-safe, flat, rubberized surface with bases and base lines permanently painted.  The field is a Miracle League field–incidentally, this field was built primarily with a gift from the Diamondbacks Foundation and anointed Dan Haren Field after the Dbacks pitcher at the time, who also happened to be Kyle’s very first bobblehead doll–and it is the only wheelchair accessible field in Arizona where he can play baseball.  Dan Haren Field is where Kyle feels at home.

Kyle has an untreatable, incurable (so far) neuromuscular disease called Spinal Muscular Atrophy, which means his body was weak at birth and will get weaker as months and years go on.  His brain is strong and smart and clever, but his voluntary muscles are too weak for him to sit up, crawl, walk, or lay down on his stomach.  He has driven himself in a power wheelchair since age two.  He has endured surgeries for muscle contractures (joint muscles so tight that he can’t straighten his legs).  His jaws are sometimes too fatigued to chew and he has weak swallow muscles, so he is nutritionally sustained by tube-feedings at night through a hole in his stomach.  This kid is a warrior and has a lot to deal with on a daily basis, which is why we are so relieved that he has baseball in which to escape, lose himself in the game, in the competitiveness, the determination to get on base or for his team to win.

Kyle is only recently six years old and so lacks the decades of player facts and game memories that other baseball fanatics might have, but he sure knows his Arizona Diamondbacks.  The Dbacks are his favorite team ever since he attended his first game at Chase Field at age four.  He watched on TV every game after that.  He watched intently–he didn’t miss a thing.  He memorized jersey numbers, player stats, and batting lineups.  At home, watching a game when the Dbacks were pitching, he put on his tiny red glove and went through the pitchers’ motions.  When the Dbacks were batting he demanded his plastic bat and swung in time with the pitches.  When he’s in the hospital during baseball season, we watch the games streaming on my laptop.
Bobbleheads
IMG_20130330_130816
Kyle was welcomed to Make-A-Wish years ago but took a while to decide upon a Wish.  What would his one true Wish be?  I suspected it would something to do with baseball, but the Wish needed to come from him when the time was right.  And then last summer, he decided.  His one true Wish was “to be a real Dbacks player”.   He ached to be part of the team, I knew it and in those moments I could sense it, know it.  Attending a game at Chase Field wasn’t enough–he wanted to be on the field with his heroes and breathe all things baseball.
At the time, the baseball season was nearly over here.  The Dbacks were fighting for a playoff spot.  Make A Wish asked us if we thought we should push his Wish to happen right away or wait until next season when there would be more time to plan.  All I could see looming in front of us was flu season.Each year my only goal is for the whole family to survive flu season, and my freshly sanitized fingers crossed themselves for six months while he patiently waited.  Kyle’s twin sister, Lauren, spent some serious time in ICU with pneumonia twice this year, but she recovered.  Kyle caught some sniffles, but was well enough to catch some spring training workouts and the next thing we knew baseball season was go for launch and it was time to tell him he would get his Wish.
The rest, as they say, is history.  Or in Kyle’s case, the rest is scheduled to air on Sports Center beginning this Sunday 18 August 2013 at 11pm Eastern.  “My Wish” is a collaborative effort with Make-A-Wish which chronicles the granting of unique sports-related wishes for children.  Hosted by Emmy Award-winning journalist Chris Connelly, this is the eighth year in which ESPN has delighted Wish families and viewers alike with the stories of some amazing children and their incredible Wish experiences.  In layman’s terms, this series rocks the casbah in every region in which there are casbahs.
I haven’t seen Kyle’s My Wish segment yet.  Like you, I must wait until 11pm on Sunday.  I’m super nervous!  I hope you can hang in there and watch ALL of the My Wish stories–each one is unique and perfect and I can’t wait.
The first My Wish story begins tomorrow (Saturday, 17 August) at 11pm Eastern.  Watch it.  DVR it.  Each story runs in Sports Center continuously and ends next Thursday.  This next week is everyone’s favorite time to watch Sports Center.  Even I know this.
Follow @SportsCenter on Twitter and use #MyWish to join the conversation.  Enjoy some amazing stories.  And view the My Wish archive here.  Tweet at @byrdsforacure should you feel so compelled.  And send mad props to @SportsCenter and @MakeAWish for continuing this series.  It’s so amazing, right?
Kyle Dbacks Kyle Dbacks1

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

I Wanna Hit a Golf Ball Like You, Mom.

That’s what my son told me last night.  He was earnest and troubled because he genuinely wants to hit a golf ball.  And a baseball.  Tennis ball.  Shuttlecock.  He REALLY likes the idea of that cathartic WHACK of hitting a thing farther than anyone else can hit it.

I reminded him that I am a pretty terrible golfer.  If I’m on your golf team, I may bring the personality (and…the profanity) but not the shots.  Nobody should want to hit like me.  But my son wants to play golf.  To watch his drive soar into the air.  I explained to him, again, that not only is he very young but his muscles are too weak.  He asked me my age.  I told him thirty seven.  “So when I’m thirty seven, I can hit a golf ball up into the air like you do?”  I reminded him that his disease makes his muscles too weak.  His arms are not strong enough today and even when (if?) he reaches thirty seven he likely will not be able to hit a golf ball into the air.  Or maybe not–he practices drills at home.

“I don’t like SMA, Mom.  I want to do things.  I want to hit a golf ball up into the air like you do.”  He looked down and drove his $65,000 electric wheelchair off to pout in a corner.  What do I do now?  I have no idea.  I am as age-appropriately honest with him, and his twin sister, as I can be–but how to explain to your six year old that thanks to a stupid Punnet square he can’t participate in the things which are important to him?  How to explain to him that he should feel lucky to even be still alive now at age six?   I don’t know.  I don’t have the answers.  I just want no other kid and no other parent to hear a diagnosis of SMA and feel the grief and despair that my family has felt.  And there are thousands of families who have dealt with the same situation–or worse.

August is SMA Awareness Month.  Every August, overwhelmed parents of terminally ill children with zero free time on their hands hire a respite caregiver so that they can blog, Facebook, or otherwise share their stories and do their part to increase awareness of Spinal Muscular Atrophy.

As it happens, I am lucky enough to be an early bird who gets the chance to blog before the kids wake up.  Before the feeding pumps beep and stop for the morning, in between the twins’ needs for repositioning, to aid them in comforting their bodies as they sleep because they can’t just turn their bodies on their own–raising awareness of SMA is important enough for me to take the time right now to tell you about it.

I’ve written about Spinal Muscular Atrophy every August for the last four years, hoping to increase awareness and public interest in the disease and generate compassion for the children affected by it.

The bottom line is this:  Newborns, toddlers, grade-schoolers die because of SMA almost every day.  Of these kids, most die because their diaphragms and other breathing muscles are too weak to allow them to breathe.  I highly encourage you to read this parent’s experience: Loving Wyatt to the End.

This disease is genetic.  It is not a random happenstance, like identical twins or landing at your destination’s airport bar just as happy hour has begun.

SMA may not be your kids, but SMA is my kids.  It could be your future kids, your sibling’s kids, your neighbor’s kids.  SMA is the most common genetic killer of children and one in forty of us carry the gene which causes it.  You can be tested to learn whether or not you are a carrier.  Your unborn child can be tested via amniocentesis.  If your doctor suspects your child could have SMA, there is a blood test to determine it.  These tests are not new.  Still, not enough of you are aware of SMA.  I know that not enough of you are aware of SMA because if even half of you were really aware of SMA then society would be screaming it’s head off about it and SMA would be cured by now.

In the article linked to above, Paula buried her baby because of SMA.  Because of SMA she lives today with the memories of her sweet infant’s last moments and of burying him.  Because of SMA my six year-old twins will live in electric wheelchairs and be dependent upon a caregiver (me, most likely and happily) to tend to their every need for as long as their weak respiratory systems can carry them.  These kids are incredibly intelligent, highly social, gloriously happy individuals with great senses of humor–our world needs more of them, not less of them.

Still, my twins’ worlds involve daily back and hip pain (thanks to scoliosis and subluxation issues resulting from muscle weakness) , chewing and feeding struggles (weak tongues and jaw muscles), and futures of spinal rod/scoliosis surgeries, acute respiratory distress and hospitalizations for pneumonia.  Add to that the frustrations on their part in not having the hand strength to shoot a Nerf gun, swing a bat, press the “B” button on a Wii remote, remove the cap of a Crayola marker, lift a full sippy cup up to their mouths or even grasp a pencil hard enough to adequately write their names on a piece of paper.

I spent the first year after their diagnoses grieving.  And then I got off my ass and became determined to help find a cure for this horrific, debilitating disease.  SMA will take my children from me one day, but I will do my damnedest to prevent other children from suffering so much and to prevent future parents from enduring such pain.  I cannot personally cure this thing, but I can raise money and make a difference–and so the Walk And Rolls and golf tournaments keep me busy so that I can detach a little bit and get distracted and feel productive.  I no longer feel so helpless in keeping my kids alive (with my own two hands, sometimes–literally) because I am doing something to help people smarter than I am to cure this thing.

But I need everyone else’s support, too.  SMA may be overwhelming, but it’s curable.  I hate SMA.  I’d much rather worry about the cost of sending my twins to college than pondering the probability that they will even live to see college.  But reality is reality.  All we can do is work as hard as we can so that my reality and my twins’ reality isn’t someone else’s reality in years to come.  Nobody wants a cure for SMA more than we do.  SMA does not define my children but it dictates how we live our days for as long as we keep living them.

So.  This is SMA.  It’s our daily reality.  If this stream of consciousness makes you aware of it, then good.

Carrier-Testing-Website

Kyle Golf

 

 

 

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.