Archive for February, 2013

An Angel in Flight

February 21, 2013
Daisy Love Merrick

Daisy Love Merrick (photo from prayfordaisy.com)

Our hearts were deeply burdened late Saturday night to hear word that Daisy Merrick passed away early that morning after her 3 1/2 year battle with cancer.  We share this with our Rudy’s Beat readers as we have asked you to pray for her over the years and so many of you have done so…so faithfully.  Her mother, Kate, shared a poignant post on Daisy’s blog just yesterday that is worth taking the time to read…prayfordaisy.com and her dad, Britt, shared a sermon 3 weeks ago at his church that is worth taking the time to listen…When Sparrows Fall.  Please continue to pray for Kate, Britt and their son Isaiah…for their comfort and for God’s grace to blanket them in their grief.  So many in our community share their heartbreak.  Thank you friends.

Have Inogen, Will Travel!!

February 11, 2013

Rudy’s been battling a lot of congestion this week. As he seemed chipper, I rigged the Inogen to his bike and let him get some fresh air. Once he saw daylight, he took advantage of having no strings attached and went off to explore the neighborhood. Despite how much he huffed and puffed, every time I tried to point him home he gave me an emphatic “NO, DADDY!” and headed in the opposite direction. After 90 minutes, he exerted himself to a bloody nose and and still protested vehemently when I finally brought the excursion to the end. Cute, tough, tenacious little warrior. He’ll be riding to the beach before we know it.

More Than We Could Have Wished For…

February 6, 2013

…that’s how I would describe Rudy’s Wish Trip!  So much thought and planning and prayer went into our trip to Florida and I really feel like our prayers were answered.  The trip was definitely worth the effort.  🙂  As we prepared for our first real family vacation since Rudy was born, my main wishes were to keep Rudy safe and to maximize our family time away!  Our experience was all that and more…all the details the Make-a-Wish staff planned unfolded smoothly, our family remained healthy and safe and, most of all, we managed to pace ourselves which all resulted in a precious, stress-free time to experience new things together as a family and laugh!

I’m so grateful for the big kids…we promised them plenty of “big kid” fun but also wanted them to keep in mind that this trip was a gift in honor of Rudy and so wanted them to engage in all the activities enthusiastically.  They did great!  Attitudes remained positive and they always made sure Rudy was included whether that meant accompanying him to a “little kid” activity at Give Kids The World or a theme park, making sure his wheelchair was front and center or picking him up in a crowd so he could see.  They just really seemed to share in Rudy’s joy and that blessed us.  I was struck by how perfect the timing of this trip was for our family…I’m not sure how much of this trip Rudy will remember but he was certainly old enough to have fun and Wilson was still young enough to have fun.  Wilson let go of any need to be a “cool teenager” and allowed himself to be a kid.  Max made it a party and played “Pied Piper” in more than a couple of impromptu football games at the pool.  Olivia was her sweet nurturing self quick to take Rudy for a walk when he got fussy or help him color at a craft activity.  There were many activities where Rolf and I were unintentionally pushed out of the way and watched from the sidelines.  Ha Ha 🙂

Olivia making sure Rudy is in the middle of the fun!

Olivia making sure Rudy is in the middle of the fun!

Maxi getting a kiss!

Maxi getting a kiss!

Wilson getting a hug!

Wilson getting a hug!

Everyone making a wish on Rudy's star at Give Kids The World.

Everyone making a wish on Rudy’s star at Give Kids The World.

At the Castle of Miracles at GKTW waiting for Rudy's magical pillow to appear!

The Castle of Miracles at GKTW waiting for Rudy’s magical pillow to appear!

Olivia and Max were quick to point out "there's room for Rudy" in the hovercraft.

Olivia and Max quick to point out “there’s room for Rudy’s wheelchair” in the hovercraft.

Wilson making sure Rudy meets Rapunzel.

Wilson making sure Rudy says a nice goodbye to Rapunzel.

Max getting ready to take Rudy for a spin on the go-karts!

Max getting ready to take Rudy for a spin on the go-karts!

Olivia reassuring Rudy that Mickey is an okay dude!

Olivia reassuring Rudy that Mickey is an okay dude with a pat on the arm!

It’s funny…we have a ton of nicely posed pictures from our trip but it’s candid moments like these that are my favorite.  🙂

It’s hard to describe a trip like this one…pictures certainly help capture all the color and fun but I wish there were words that could adequately describe the range of feelings we encountered.  The trip was one of both beauty and pain.  Much like our life with Rudy from day to day, joy and heartache coexisted at Give Kids The World for me and Rolf.  There was just no escaping the reason why we were on this trip and that the many families visiting GKTW were families like ours…journeying with a medically fragile child.  There were times I was brought to tears overwhelmed by the kindness of the volunteers who were there to serve us while at the same time in disbelief over the fact that our family was even on a Wish Trip…dare I say, wishing Rudy was a healthy boy and never qualified for a wish trip to begin with!  There were many times when I felt like we were walking on holy ground among people who regardless of their religious beliefs were on a faith journey just like us as they face immortality and the very real threat of losing a child.

I was surprised at first that there wasn’t more “connecting” among the families visiting GKTW but then I realized that we were all there to focus on our families so quick little exchanges with other families while waiting in line for a carousel ride or breakfast at the Gingerbread House with no promise to “stay in touch” seemed appropriate.  No “talking shop” or comparing treatment notes.  It kind of felt like no one wanted to intrude on others’ space and so most kept a friendly distance.  Very few volunteers asked what Rudy’s condition was…most just ooooed and ahhhhed over how cute he and the big kids were.  Although I don’t mind answering questions about Rudy, it was surprisingly refreshing to not have to.  I’m not sure if it is by design or just happens naturally at Give Kids The World but demonstrating care and concern happens less with words and thoughtful inquiries about specifics and more by doing acts of friendly service.  It was special and, at times, overwhelming and ALWAYS much appreciated.

We are grateful to Linda and Anne at Tri-Counties Make-a-Wish, to Mike and the team at Inogen, to the amazing staff and volunteers at Give Kids The World and to the countless others who made this trip possible for our family.  It really is an experience we will cherish for our lifetime and hope to pay forward in the future.  🙂  Okay, one last look…

Epcot, of course.

Epcot, of course.

Classic Magic Kingdom

Classic Magic Kingdom

A visit with an armadillo from Discovery Cove

A visit with an armadillo from Discovery Cove

Sweet Pluto

Sweet Pluto

A BIG hug from Mickey!

A BIG hug from Mickey!

A dance with Cinderella!

A dance with Cinderella!

Rudy playing it cool with Cinderella!

Rudy playing it cool with Cinderella!

Sending a letter to God at Give Kids The World..."where happiness inspires hope"!

Sending a letter to God at Give Kids The World…”where happiness inspires hope”!

A carousel collage.

A carousel collage.

Reality is hitting us this week…Rudy  came down with a fever and cough so he and I are laying low at home.  Oh well, the “vacation glow” can’t last forever, I guess…but as Olivia said yesterday “it’s nice to daydream about Give Kids The World”.  Ha Ha

A BIG FAT Thank You!

February 1, 2013

It’s hard to believe we flew home from Florida a week ago today!  As expected, we jumped right back into the routine of work, school, housework and I’m still trying to get everything unpacked and put away. 🙂  We’re also still processing our thoughts about our time away so be on the lookout for a recap post soon but in the meantime we wanted to shout out a big, fat thank you for the blessing that unfolded yesterday…

We are now the proud and joyful owners of the InogenOne portable oxygen concentrator!  We were totally blown away by the unit on our trip…Rudy didn’t  seem to skip a beat adjusting to it and it was not only so easy to manage but it was also just so nice not to have to think twice about his O2 supply when we were out and about on our long excursions.  I returned the unit we borrowed on Monday wistfully hopeful that we would one day be able to work out the remaining details to acquire one for Rudy permanently (lots of technology goes into these nifty gizmos and that makes them expensive).  I was surprised when our new friend Mike at Inogen called me yesterday and asked if I could drop by before the workday ended because he had a surprise for us!  When Rudy and I arrived, Mike sweetly said “there sure are a lot of people who love you guys” and presented us with a brand new unit with accessories!!  Thanks to the folks at Inogen and dear mysterious angels who chipped in, Rudy now has his very own “pump,pump” with which he is very pleased!

Thank you Inogen!  Thank you, dear friends!  The power of community is a mighty force…we are feeling it…we are empowered by it…and we are intensely grateful for it!  Thank you!

A picture says a thousand words!

A picture says a thousand words!