Archive for April, 2013

Two Sides To Every Coin!

April 24, 2013

It’s becoming increasingly clear that Rudy’s care is like a coin with two distinctly different sides.  On one side, there are the medical concerns which involve coordinating his regular schedule of doctor visits and blood draws, keeping up with all his daily medications, making sure prescriptions are current, tracking down the proper medical supplies & managing his medical care at home and school in general.  The other side involves Rudy’s developmental needs and the support he gets from his therapy unit, the school district and, of course, home.  We are so entrenched in managing both sides of the coin that we really can’t see one apart from the other but there are seasons when our attention is focused more on one than the other.

In the very beginning, of course, our attention was on Rudy’s medical needs…our resources, every step, every breath we breathed was focused on Rudy’s survival and recovery.  When we brought him home, the line between medical and developmental was grey and our attention was equally divided between the two.  Now, with Rudy’s medical status in limbo and specific plans for any future treatment on the back burner, our attention in recent months has been focused more on his developmental care…with more intentional effort…and it shows.  There is so much to be thankful for like major progress in mobility and big hurdles being overcome in oral feeds!!!  Rudy is growing in his ability to express himself verbally and finds great delight in singing a variety of happy songs.  We’re also extremely grateful for the partnership and support that Rudy’s therapists and teachers provide as they work hard to help Rudy reach these milestones too.  I should be jumping for joy but the coordination of Rudy’s developmental care challenges me for many reasons and all it takes is one negative interaction or insensitive comment from an idiot (i.e. Rudy and his bus mate recently being referred to as “retards”…by an ADULT who should have known better) to make me feel defeated.  I know in my mind I shouldn’t let it all get to me but my heart is hard to capture in those moments and I feel I better get a handle on it quick before the day comes when I’m not the only one who feels defeated…the day when Rudy won’t be so blissfully unaware and will have to learn how to confidently navigate his medical and developmental limitations in an insensitive and, as we saw in Boston last week, a sometimes DOWNRIGHT cruel world.

What unfolded in Boston, however, is a deeply felt reminder to me..that for every terrible act by the individuals involved that was meant to kill and destroy, there were countless acts of heroism and extravagant kindness extended by strangers to those in need.  (Talk about two very different sides of a tragic coin!!!!)  We’ve certainly experienced this over the years…countless blessings for every heartache!  Ironically, in these past few months that have been particularly discouraging for me, there have been quite a few practical expressions of kindness extended to Rudy…extravagant kindnesses like the gift of Rudy’s O2 concentrator by Inogen and anonymous benefactors, creative kindnesses like Rudy’s Wish Trip Scrapbook from “Crops of Luv” and his Heart Hero Cape from “Powercapes.com” and a special delivery on its way to Rudy from “Spencer Family Frogs/Facebook” meant to encourage Rudy and remind us all to “Fully Rely On God”…so cute!  Each one an example of strangers reaching out to other strangers in love with gifts of friendship and encouragement…thoughtfulness I don’t take for granted.  I’m so thankful for you…our dear friends/family with dear hearts that drown out the thoughtless few who don’t understand or choose not to live by the Golden Rule.  We are so blessed!

Powercapes.com sent Rudy this cool "Heart Hero" cape to wear to doctor appointments and procedures!  Fun idea!

Powercapes.com sent Rudy this cool “Heart Hero” cape to wear to doctor appointments and procedures! Fun idea!

"Crops of Luv", an organization in AZ, put all of Rudy's Wish Trip pics and memorabilia in a beautiful scrapbook - free of charge!!!

“Crops of Luv”, a non-profit organization in AZ, put all of Rudy’s Wish Trip pics and memorabilia in a beautiful scrapbook – free of charge!!!  He LOVES to flip through and look at the big, colorful pages filled with pics of himself and his sibs having fun!

Here are a few family highlights from the past couple of weeks…

Wilson celebrated his "Sweet 16" with an off-campus lunch date at McDonalds with his Momma...

Wilson celebrated his “Sweet 16” on April 9th with an off-campus lunch date at McDonalds with his Momma…

...and a birthday dinner with Birthday Buddy Michele! :)

…a small birthday celebration at home with the fam and Birthday Buddy Michele! :)…

...AND a trip down south with Dad and Max to see Green Day!

…AND a trip down south with Dad and Max to see Green Day!

A little trip down memory lane…just for fun…:)

Wilson's 5th Birthday in 2002...

Wilson’s 5th Birthday in 2002 (how CUTE were they!!!!)…

...Fast forward 11 years to 2013!!  Ha Ha

…fast forward 11 years to 2013!! Ha Ha

Rudy's new passion in therapy...you can't underestimate the victory in being able to push off, lift your legs up and hold for a really fun ride!!!

Rudy’s new passion in therapy…you can’t underestimate the victory in being able to balance, push off, lift your legs up and hold on for a really fun ride!!!

Look who likes avocados!!!

Look who likes guacamole!!!

Good thing we have a big tree full of avocados!

Good thing we have a big tree full of avocados!

A focused fan at the Westmont Warriors game!

A focused fan at the Westmont Warriors game…

...helpful too!  Rudy keeping stats!

…helpful too! Rudy keeping stats along with Coach Gregory!

Rudy has a cardiology appt. tomorrow…’not expecting much change but will give a heart update after tomorrow’s appointment.

The Joy of the Resurrection

April 3, 2013

Although Easter is over, my joy over Christ’s resurrection certainly remains.  I find the appeal of heaven grows as  I grow and oh how grateful I am for the sacrifice Jesus made on my behalf!!  A brutal sacrifice that gives me heaven!!!  I had a quick email exchange with Daisy’s mom this week and she painted a sweet picture of heaven that I found particularly meaningful as I reflected on Christ’s sacrifice and the hope of heaven…in her message she wrote,

“Please know how much Daisy loved seeing Rudy say hi to her (in reference to a video Rudy sent Daisy), and that she cares very much for him.  One day we will all picnic and laugh while Daisy and Rudy play tag and joust on huge horses and dive off cliffs into clear waters.”

What a sweet thing to say…what a beautiful image…what a comfort…what joy there is to be experienced in heaven!!!  And what a gift it is that we can experience “heaven on earth”…even though our spring break was plagued by illnesses (Rudy was down with his stomach virus for 6 days and Maxi ended up getting it on Sunday) that kept us quarantined at home, it had some special “heaven on earth” moments too.

The joy of serving the homeless at SBRM's Easter Feast.

The joy of serving the homeless at SBRM’s Easter Feast.

The joy of watching a child accomplish a "first"...Wilson's first triathlon.

The joy of watching a child accomplish a “first”…Wilson’s first triathlon.

The joy in knowing Grandpa Dick would be so proud.

The joy in knowing Grandpa Dick would be so proud.

The joy of an Easter egg hunt at church.

The joy of an Easter egg hunt at church.

Joy!

Joy!

Thank you for praying for Rudy!  He’s definitely on the mend (as is Max) and we’re slowing introducing feeds again.

Wishing you joy, dear friends!