February Events

February 22, 2015 by

Here we are near the end of February already!  It turned out to be a full, emotion-packed month which is going to culminate with my 49th birthday the end of this week.  Yikes!!  Where did the month go?…Where did the last decade go?

Life got so full the past couple of weeks that I even missed Rudy’s cardiology appointment last week!!!  In the 6 1/2 years that we’ve been seeing Dr. Harake, I never missed an appointment…until now.  Thankfully his scheduler was able to squeeze us in tomorrow morning so we won’t be too late making it up.  :)

So, what was so distracting?  Well, we said “goodbye” to Rudy’s longtime school nurse a week and a half ago :(…Rolf and the big kids met me at the school for a little surprise send off with Rudy and his classmates.  It was a sweet time honoring Sara and welcoming nurse Jomana to the team.  Rudy is definitely adjusting but he is in good hands and we wish Sara GREAT success at the pediatric clinic!!

We're so grateful for Sara's tender care of our Rudy and ESPECIALLY for her friendship!  :)

We’re so grateful for Sara’s tender care of our Rudy and ESPECIALLY for her friendship! :)

Fun with Rudy's classmates.

Fun with Rudy’s classmates.

The official changing of the guard during a group hug with nurses Sara and Jomana!

The official changing of the guard during a group hug with nurses Sara and Jomana!

Thank You Sara!

Thank You Sara!

Wilson was one of nine DP seniors who was chosen as this year’s Trailblazer recipients and acknowledged  at the last basketball home game of the season…so fun for him.

2015 DPHS Trailblazers

2015 DPHS Trailblazers

Max’s first Varsity Hockey season ended with a win for a third place finish…

Woo Hoo SB Varsity Blue!  :)  P.S. SB Varsity Gold placed 1st!!!  SB Rules.  :)

Woo Hoo SB Varsity Blue! :) P.S. SB Varsity Gold placed 1st!!! SB Rules. :)

We’ve collected a handful of fun video clips this month that were too short to upload to Vimeo by themselves so I made an iMovie of them all together to make it long enough to upload!  (feeling very tech-savvy right now)  Enjoy!!!  (a video message from Rudy to Nurse Sara, an original rap by Wilson and Max, this year’s installment of “Will You Be My Valentine?” filmed by the big sibs on a ski lift at Big Bear on Valentine’s Day, Wilson and the DP drumline at the last Bball home game, Wilson and Max playing at FCA).

In addition, the big sibs got to go on a ski trip with their church youth group over the long President’s Day weekend, Rolf, Rudy and I hosted our sweet newlywed friends Sarah and Chris that same weekend and I had a speaking engagement & a couple of opportunities to sing this last week!  Special stuff!!  In the midst of all this goodness, Rolf and I were reminded of the severity of Rudy’s situation by a very interesting CDC research article. How it relates to HLHS is secondary to the original study focus but check out the survival rate chart at the end of the article…Click Here – CDC Article.  Although we genuinely look at our life as 1/2 full as opposed to 1/2 empty, it is shocking to see in black and white that HLHS has the lowest survival rate of all major birth defects!  Makes us EXTREMELY grateful for Rudy’s life and motivates us to pray, pray, pray!!!

Congenital Heart Defect Awareness Week

February 9, 2015 by

February 7-14, 2015 is Congenital Heart Defect Awareness Week and I’m always happy to spread the word about CHDs…especially when it involves a classroom full of friends and a fun craft!  :)

Rudy’s teachers gave me the opportunity to come to Rudy’s classroom today and share about CHD Awareness Week with his classmates.  The kids were great and I had lots of fun hanging with them for a bit.  Together we defined “congenital heart defect” and we talked about how important it is to learn about CHDs…i.e. to understand kids like Rudy better and to remind us to be “heart healthy”.  We ate blueberries (a heart healthy food) and made a CHD heart magnet to display at home.  Fun, Fun!

Olivia made me a new insert for my phone case this morning!   LOVE IT!

Olivia made me a new insert for my phone case this morning! LOVE IT!

Congenital Heart Defect Awareness Week 2015

Congenital Heart Defect Awareness Week 2015

Fun with friends at school :)

Fun with friends at school :)

Rudy showing off his "mended heart" magnet.

Rudy showing off his “mended heart” magnet.

Hugs and Love!

Hugs and Love!

Wishing you heart health and lots of love this week….

Paradigm Shift

February 3, 2015 by

I apologize for my delay in posting after our appt. with the heart clinic a couple of weeks ago…I haven’t been very motivated to post in part because our family schedule has been full but also because our time at the heart clinic left me feeling confused and irritated.  It has taken me a bit to process it but I think I’ve come to a helpful shift in my perspective.

Rudy is fine…no change good or bad but what frustrated me was the consultation we had with the cardiologist after Rudy’s exam. With no new things to report regarding Rudy’s condition, the discussion quickly turned to hypotheticals (I hate talking about hypothetical scenarios) and I was confused by the lengthy dialog we were having about things we ruled out 4 years ago.  There are a handful of cardiologists that rotate through the clinic so we see a different one every visit.  As a result, it’s only natural that we would have repeat discussions with different doctors but it felt like we were reverting back to square one this visit and it felt like a waste of time.   The cardiologist we saw is a great doctor and my frustration wasn’t with the cardiologist specifically but rather with clinic itself.  Why do we go?  What’s it’s purpose, really?

In reflecting on the past couple of years, I realize now that my expectations for Rudy’s heart clinic appts have been pretty unrealistic.  You see, Rudy’s condition is monitored closely by Dr. Harake every 6-8 wks here in Santa Barbara, Dr. Harake keeps the team at UCLA updated and then we check in with them face-to-face at the heart clinic every 6 months. I approach each clinic appt with great expectation hoping to get helpful information that will serve us in developing a plan of action for Rudy.  Of course, with Rudy being in limbo medically, this doesn’t happen and so I usually leave clinic disappointed and emotional.

It’s a totally understandable dynamic but I realized this last visit that my perspective on clinic needs to be revised…I don’t think the purpose of clinic is to GET anything but rather to GIVE the team information they need to determine Rudy’s current status and maintain a breadth of baseline information that will be helpful should Rudy ever become a heart transplant recipient.  There’s only so much that can be determined by an echocardiogram.  The details that Rolf and I can give about Rudy’s interaction with every day life is important in filling out the bigger picture!  It may seem like a subtle mental shift but it has a huge emotional impact.  Not only does it eliminate disappointment over unmet expectations but, if my role in providing information is crucial, then it also refreshes my motivation for clinic.  It’s a helpful distinction for me and I’ll have an opportunity to try out this new perspective in a couple of months when we return to clinic in April.

In the meantime, Rudy is plugging away at physical and occupational therapy at the medical therapy unit as well as speech therapy, occupational therapy and adaptive P.E. at school and continues to take great pride in his developmental progress.  Regardless of all the details that go into assessing Rudy and all the extra services that define his daily routine, Rudy is a walking miracle and I find great joy in the reminder today that he is fearfully and WONDERFULLY made (Ps. 139:14).  This truth needs to be my overriding focus ALWAYS!  :)

Rudy’s a good helper as he demonstrated this week while helping to bring the groceries in from a Costco run.  Check him out in action!…

Rudy rarely falls asleep during the afternoon if he's NOT in his own bed but he fell asleep on this day while watching Mickey Mouse WITH Mickey Mouse!  Work hard, Play hard, Sleep hard…that's how Rudy rolls!

Rudy rarely falls asleep during the afternoon if he’s NOT in his own bed but he fell asleep on this day while watching Mickey Mouse WITH Mickey Mouse! Work hard, Play hard, Sleep hard…that’s how Rudy rolls!

February 6-14 is National Congenital Heart Defect (CHD) Awareness Week!  Stay tuned for some CHD Awareness fun!

February 7-14 is National Congenital Heart Defect (CHD) Awareness Week! Stay tuned for some CHD Awareness fun!  Thank you Rayme (Logan’s mom) for this cool graphic!

Happy Boy in the dolphin shirt!

Happy Boy in a dolphin shirt!

Much To Ponder

January 14, 2015 by

So 2015 is starting out as somewhat of a mixed bag…

On one hand, GREAT JOY!  A post-Christmas visit from my brother and his family spilled over into the New Year and so the start of 2015 rocked with cousin fun.  :)  Then, just four days after the Wilsons left, we had the privilege of hosting a student from Australia through a program at the boys’ high school.  Needless to say, Rudy was in “extrovert heaven” and pretty much demanded everyone’s attention for 2 weeks straight!  Ha :)

Okay, just one more pic of the cousins.

Okay, just one more pic of the cousins.

We had some Aussie fun (i.e. Tim Tams & Vegemite!) with our new friend Daniel.

We had some Aussie fun (i.e. Tim Tams & Vegemite!) with our new friend Daniel.

On the other hand,  it has also been very heavy…lots of heartbreaking news that has come like a one, two, three punch.  Just 3 days after my brother’s family returned to Kansas, they received the devastating news of a dear friend’s suicide.  A friend my niece expressed concern about while they were here and a dear soul with whom my Olivia enjoyed a pen pal friendship.  Yesterday was Emilie’s memorial service and my niece Emma was asked to speak.  My heart has been heavy for the Wilson and Munyan families all week…it’s so hard to watch loved ones (my niece especially) hurt in such tragic circumstances.  I’m grateful for the few but truly memorable times my path crossed with Emilie’s.

Olivia with Emma, Emilie and Gma Jo in 2011.

Olivia with Emma, Emilie and Gma Jo in 2011.

And changes in the life of our family are unfolding as we’ve gotten word of significant members of the Rudy’s Beat community moving on…the most recent being dear nurse Sara.  The reality is that Sara is terribly over qualified to be Rudy’s school nurse and she is PERFECT for her new professional opportunity (100% excited for her) but she has been such an important part of Rudy’s school experience the past 1 1/2 years (truly God given) that it is hard to let her go.  ;(

Rudy goofing around with Nurse Sara!

Rudy goofing around with Nurse Sara!

(Deep sigh) I’m uncomfortable with certain kinds of change and I’m beginning to face the reality that 2015 will be a year of big change as members of Team Rudy transition, expectations are adjusted and (the biggest known change, of course) as Wilson prepares for a strong high school finish and heads off to college. All of which are great reasons to celebrate but also have sad ramifications for me which is adding to the heaviness of this week.  “Be anxious for nothing”…”Be anxious for nothing”…”Be anxious for nothing”…not an easy exhortation for me to put into practice sometimes.  ‘Praying for peace of mind and heart as I ponder the present and approach the future with faith.

Rudy’s biannual check-in with the heart docs at UCLA was originally scheduled for last month but was postponed a couple of times landing on next Thursday (1/22).  Our visit to the pediatric heart clinic will include an echocardiogram, labs, consult with the cardiologist on duty and a quick chat with Dr. Alejos…all pretty routine.  Stay tuned.

Inspired Creativity

January 5, 2015 by

The kids returned to school today (except Rudy…he has one more day of vacation), the Christmas decorations are all packed up and stored for next year (except for the Christmas tree…not quite ready to take EVERYTHING down yet) and I’m up and at ‘em this morning ready to tackle the list of “to dos” (except I may just do today in my pajamas…not quite ready to get dressed).  :)

The Wilsons flew back to Kansas on Saturday and Rudy had the longest nap on record Saturday afternoon after they left!  Ha Ha  As is our MO, we packed a lot into our 6 days of cousin fun and are grateful for the fun memories made.

Family photo at the Reagan Presidential Library

Family photo at the Reagan Presidential Library

Presidential Library selfie!

Presidential Library selfie!

Flannel fun!

Flannel fun!

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A Christmas vacation well spent!

A Christmas vacation well spent!

Rudy was gifted a sweet tribute this past weekend as well…a friend from church recorded a song he wrote for Rudy and gave us a copy (I’ve attached it below).

It’s always such a blessing to see (or hear) the creativity inspired by Rudy.  We’ve received a handful of gifts of love over the years that were all inspired by Rudy’s energy, determination…smile.

Remember CeCe VanNortwick’s Rudy’s Heart?

Rudy's Heart...all dolled up!

And Steve Subject’s portrait after Rudy’s Wish Trip?

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And, of course, Greg Lawler’s photographs that flood this blog.

This is one of the first pics Greg took of Rudy.

This is one of the first pics Greg took of Rudy.

It touches me deeply to experience how others see our boy.  I say “experience” because that is exactly what an expression of creativity is…AN EXPERIENCE…a moment in time captured by the artist that tells a story filled with emotion and depth of thought if you explore it long enough.

Thank you, dear friends, for the many thoughtful gifts of love and creativity that we’ve received over the years that continue to encourage and bless our family…especially as we start a new year…another year of unknowns but also another opportunity to live in faith and hope.  I wonder what will inspire us in 2015?  I pray we’ll have the presence of mind to stop and experience the precious moments that can easily be missed and be transformed by them.  May your 2015 be an inspired year filled with beauty and growth too!  :)

Here’s Greg and Kristin Kirchmaier’s song:

Happy New Year 2015

December 31, 2014 by

10455938_10152693518494473_7690136903892660594_n2014 ended on a high note and 2015 is starting with a bang as we’re enjoying a visit from the KS Wilsons this week!  The only drawback to living in California is that visits with family are fewer than we’d like so we’re taking FULL advantage of our time together!  Rudy is LOVING getting non stop attention from an adoring aunt, uncle and 4 crazy cousins.  :)  ‘Praying fun with extended family will be the trend for 2015!!!

Pismo dunes!

Pismo dunes!

Food….LOTS of food!!!

Food….LOTS of food!!!

Tallest to smallest 2004.

Tallest to smallest 2004.

Tallest to smallest 2014.

Tallest to smallest 2014.

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Rachel, Emma, Jonathan, Wilson, Michael, Max, Olivia, Rudy

Rachel, Emma, Jonathan, Wilson, Michael, Max, Olivia, Rudy

Happy New Year Everyone!

Happy New Year Everyone!

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Merry Christmas 2014!

December 25, 2014 by

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Here it is Christmas eve…the kids are all nestled snug in their beds, the tamale dinner dishes are all cleaned up and I’m enjoying sitting by the glow of the Christmas tree for a little bit while Rolf finishes up some gift wrapping!  We have so much for which to be thankful and we count ourselves blessed beyond what we could ever measure.  Our lives are richer for having YOU in it and our lives are worth living because of the little baby whose birth we celebrate this night!  Merry Christmas dear family and friends!  We wish you GREAT JOY…always!

Yesterday at the Rescue Mission homeless guest Christmas celebration.

Yesterday at the Rescue Mission homeless guest Christmas celebration.

Passing time with Olivia earlier today.  :)

Passing time with Olivia earlier today. :)

Opening the traditional Christmas eve gift of pajamas!

Opening the traditional Christmas eve gift of pajamas!

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12-24-14 Merry Christmas from the Geylings1

12-24-14 Merry Christmas from the Geylings

Tearjerker…a good one!

December 22, 2014 by

I didn’t write this article but I should have…I see the content of this article lived out before my very eyes every day.

Click here for link to the original article on the  “Mommies of Miracles” website OR scroll down for our personalized reposting ;)

Dear sibling to a child with “specialties”: Let me tell you why you’re amazing….

Written by: Katie Corkern

Hey there little friend,

I heard you are the sibling to a child with “specialties” and I wanted to write you a letter explaining why you have a one up on life. I know your life might seem hard or different from your friends, but trust me you most definitely will be more prepared for this life than anyone else walking around this big ole Earth. Let me explain…

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I heard that you deal with more than any child should, like having your parents spend a lot of time away from you. You know they are taking care of your sibling, possibly bringing him or her to the doctor, maybe your sibling is admitted in the hospital often, they might be on the phone taking care of insurance business, or even physically caring for your sibling constantly. I know my friend. You see these happenings more often than not. You see the love that your parents have for your special sibling and it is being embedded into your heart. You see the patience they exhibit when caring for him or her and it is being buried into your soul. You see that your parents never stop trying to get what your sibling needs and it is being ingrained into your mind. You see your parents exhaust themselves making sure that your sibling and you are well taken care of and loved and you are learning from this. You may not know it, but all of these “little” things are teaching you traits of how to be an amazing person.

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I’m certain that being the sibling to a child with different needs than most is a struggle. I know you have those moments where your heart stings with jealousy, where you are worried sick over your sibling, or when you get mad because you can’t go to all the birthday parties you want to. All of those times are totally understandable. You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things that you have in your household that your friends don’t. How about all the cool equipment your sibling has? Huh? I know you’ve climbed into that wheelchair or played with his super cool assistive technology toys! How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body? You get to experience a friendship that is like no other. Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart. They look at you with those beautiful eyes and know that you are there for them no matter what. The bond you have is indescribable. You are their sibling, their friend, and their protector. Your sibling might not be able to speak verbally, but we both know that your hearts together carry on conversations that us adults could never possibly understand. And I tell you what, we are so extremely jealous.

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Did you know that your parents watch you and your siblings interactions on a daily basis and their heart literally wants to burst out of their body with pride and love? They see everything you do for your brother or sister. They notice when you walk by and give them a quick kiss, stroke their hair, or give them a hello. Your mom and dad love to witness you sticking up for your special sibling, or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place, hold their hand during tests or doctor visits, or wipe their innocent little face. Your parents recognize every time you perch yourself on the counter to help make medicines or bring them a diaper, a syringe, or whatever else they are calling out to you! You do such a crazy amazing job helping your parents. It surely takes a wonderful little boy or girl to do what you do on a daily basis. I’m sure they tell you thank you, but sometimes if they don’t just know THEY ARE BEYOND THANKFUL FOR YOU!

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But most important of all, my dear one, the reason you are going to ROCK this life- you know true love, you know true heart ache, and you know what is truly important. You have lived a life that takes a strong heart and a strong mind. You will mature much faster than your schoolmates (don’t be too hard on them), you’ll exhibit compassion that astounds others, you’ll know more about healthcare than 95% of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what! When you were introduced to your sibling with complex needs for the very first time, that moment in time is pinned in the stars, for it was then that your destiny was determined. You will be an awesome human being and you are going to change lives for the better….all because you were the sibling of a child with specialties. Rock on my brave friend!

All my love,

the momma of a child like you and your special sibling

Tearjerker, RIGHT!!!  Thank you Katie Corkern for so beautifully describing the reality for our not-so-typical typical kids!  I pray every day that the impact of our family’s journey on the big sibs will be a positive one and that Wilson, Max & Olivia recognize how truly special they are & how very much they have to offer the world in their lifetimes.

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The Older I Get…

December 16, 2014 by

… the simpler my holiday preparations become… the closer I feel to family and friends as I write my Christmas cards… the more I cherish the oldest ornaments… the more fondly I remember Christmases past… the longer I hold on to a holiday hug… the more I realize Christmas is a matter of the heart… the tighter my throat gets when I sing “Silent Night”… the more I enjoy giving than receiving… the more I try to see Christmas through the eyes of a child… the longer I sit at night in the glow of the Christmas tree… the more wondrously beautiful the Christmas story is… the deeper my awe at God’s infinite love… the More I Love Christmas!

This poem has made it’s way around on the internet the past few years and I was reminded of it again recently when a friend included it in her Christmas Card.  I don’t mean to be sappy or overly sentimental but it’s SO TRUE and it becomes more true with each year that passes.  The older I get, the more I love Christmas…and all that stuff in between!!  :)

The fact that time is marching on has been more apparent this year than ever before with the big kids busy off doing all kinds of fun stuff on their own.  We were hard pressed to find a time this past weekend when we could walk over to Stow House together to see Santa.  Livy went with us but the line to see Santa was so long, she had to leave for a soccer clinic before we made much progress!  Ha Ha  All the big kids are in a final hard push this week and looking forward to their break from school.

Rudy came down with chest congestion late last week which turned into a pretty deep cough over the weekend.  We saw Dr. Harake yesterday and he wants Rudy to see his pediatrician (we have an appointment this morning) to get on top of it before it becomes a larger problem. Rudy’s 02 saturation normally reads in the high 70s- low 80s but was in the mid-60s during our appt. with Dr. Harake so we’ve bumped up his 02 flow a bit…he’s happy and not distressed so we’re having a couple of sleepy pajama days at home while we wait for this bug to run it’s course. ‘Praying for a speedy and COMPLETE recovery!!

Waiting in line to see Santa!

Waiting in line to see Santa!

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Merry Christmas from Santa and Rudy!

Merry Christmas from Santa and Rudy!

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Can this smile get any bigger?

Can this smile get any bigger?

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Yep!

Christmas Is Coming!

December 12, 2014 by

With all the hustle and bustle on the streets and in the stores, with more and more lights popping up in our neighborhood, with Christmas music being freely played around the house (emphasis on “freely” since I have to secretly listen to it the rest of the year in my tyrannical household) and the kids cramming for tests and projects before their school break, Christmas must be coming!

The past ten days have also been filled with the start of mid-week Advent services at out church, the annual Santa Barbara Holiday Parade, a few Silver By Trish jewelry shows, an art lesson at Bethel House (SBRM’s women’s recovery home}, the BH Christmas tea hosted by the auxiliary, the SBRM Board Christmas celebration and a stop by our neighborhood fire station to share some holiday treats!  All such fun and highly anticipated every year but overshadowed this year by our heavy hearts for the Nelson’s.  Rolf, Wilson, Olivia, Rudy and I were blessed to attend Moriah’s memorial service in San Jose last Saturday.      (Max missed out on the family road trip due to his hockey game in Santa Maria.)  It was a quick trip there and back…a LONG day in the car for just a couple of hours in San Jose but it was very much worth it…it was a precious time of tears, celebration, hugs.  Please continue to pray for this sweet young family as they grieve and face excruciating adjustments in their day to day life.  Here is their blog – Moments With Moriah.

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Rudy and Moriah's Dad Justin

Rudy and Moriah’s Dad Justin

A hug with Moriah's Mom Victoria.

A hug with Moriah’s Mom Victoria.

It seems like with every loss, the filter through which we view and experience life is revised…and that’s a good thing.  I was struck with just how many losses we’ve seen in our circle this year as I made my way through the Christmas Card list from last year.  I know that’s just the reality as you get older but there were definitely too many this year…dear Opa and friends young & old. ‘Praying for all those who are navigating their first Christmas without their loved one!!!

Greg Lawler captured a big hug at home.

Greg Lawler captured a pile up at home during one of my jewelry shows.

A visit to our neighborhood fire station to drop off some treats led to a turn in the engineer's seat!!  Woo Hoo!

A visit to our neighborhood fire station to drop off some treats led to a turn in the engineer’s seat!! Woo Hoo!

Thanks Fireman Matt!

Thanks Fireman Matt!

Christmas treats from Austria…thanks Oma and Tante Andi! ;)

Christmas treats from Austria…thanks Oma and Tante Andi! ;)

Your never too old to enjoy a Kinder Egg!

You’re never too old to enjoy a Kinder Egg!

We’re looking forward to Santa coming to nearby Stow House this weekend for our town’s annual Christmas party and to the kids’ last week of school before winter break.  They have a week filled with secret santa exchanges (Olivia), Holiday Package performances (Wilson and Max) and lots of extra fun in room KA i.e. building gingerbread houses with big buddies (Rudy)!!  ‘Wishing you all happy preparations too!  :)


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