Today has been a relaxing Mother’s Day in the midst of a marathon month of all kinds of end-of-the-school year activities!  I’ve appreciated a day with no plan except to play in the pool!  🙂  I’m in a season of life where simple is sacred and today was beautifully simple.  Mother’s Day is multidimensional for me…of course it’s a day to appreciate my own wonderful mother and be grateful for my mother-in-law who I genuinely love and respect…it’s also a day to remember the many “mother like” women in my life who have invested in me over the years and modeled what it means to be a woman of character and beauty…and, naturally, it has become a day for me to reflect on my own role as “mother” and the many ways I’m both blessed and challenged in that role.

From the very start of my journey as a mom, I’ve had the perspective that I am entrusted by God to care for the children I’ve been given for a season and that my investment has eternal significance.  Each of my children have enriched my experience with their own unique qualities and stretched me in ways I’m not sure I could be otherwise.  Rudy, of course, has stretched me in ways I couldn’t have ever imagined which serves to make me even more aware of what a gift they all are and what an honor it is to care for them…even on days when it’s hard and I’m uninspired.

Mother’s Day is also a day when my thoughts are with the dear women in my life who have lost a child…those who continue to navigate life with the heavy burden of a mother’s grief that may change shape over the years but is ever present…women for whom I am so grateful and through whom I have learned to see the beauty in every day of the journey for there is, indeed, beauty to see each and every day.

There has been a song on Christian radio the past couple of years called “All of Me” that has been a favorite song of mine for some time.  Ironically, it wasn’t until I really listened to the song recently that I realized it was about a child with a heart defect.  The song was written by Matt Hammitt whose son was born with HLHS three years ago and the song is about their bond.  It’s a beautiful song that so clearly expresses this mama’s heart…an appropriate reflection on Mother’s Day.  Click here Matt Hammitt’s “All of Me” to hear the song on youtube.

I’m sure grateful for the special mom/child moments we’ve shared the last couple of weeks…

I thank God for the honor of being Mom to Wilson, Max, Olivia and Rudy.  They’ve captured my heart and they have all of me…the good, the bad and, sadly sometimes, the ugly.  🙂  I pray by God’s grace they grow to be confident, faithful and joyful individuals who are self-aware and others-centered…and who know how very much they are loved.

Happy Mother’s Day dear friends.

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!

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

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

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

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.

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!

There’s no denying that Rudy is a tough kid but he had to prove it again today with another “first”…he managed to knock out his own two front teeth!  I’m not even quite sure how he did it but I was with him and Olivia in my room this morning when I saw him lunge forward while sitting on my bed.  Olivia walked over to help him sit upright again when she saw blood streaming down his chin and called me over.  Good grief!  One tooth was out completely, the others around it were loose and he ended up losing a second tooth a little later!!!  He was chewing on a plastic bottle at the time so he must have fallen on it just right when he lunged forward…he bounced back quickly but his impressive injury bled for several hours after the incident so he looked pretty messed up a good bit of today.  He’s fine, thankfully, and they were just baby teeth anyway but it’s a first that’s definitely worth documenting with pictures…

 

Max was quick to point out the upside…double pay out from the tooth fairy!  Oh yeah, I almost forgot about the tooth fairy!!

Grandma Jo, Rudy and I drove to Palmdale today to watch Olivia play in a soccer tournament and when we returned this evening, I discovered a large package on the front porch with a note addressed to Rudy.  I opened it to find this amazing painting…

 

The note was from one of Olivia’s Girl Scout sisters and her dad (who paints!) and the note read in part:  “Dear Rudy, We are glad you had a fun time at Disney World.  We saw your picture in the newspaper.  I especially liked the one where you were signaling a touchdown…the happiest I have ever seen anyone.  Your picture reminded me of a boy on a swing so I used my imagination to paint a picture of you on a swing with Disney pals…”.  Oh my goodness!  What a gift…what a fun creative expression!!  A new treasure for us indeed!  Thank you, thank you dear friends…

…this certainly is a special end to a special day…

 

Soaking up all that is rich!

 

 

 

Dear Friends,

It has been hard to put thoughts into words the past couple of weeks.  Daisy’s death was/is a tough loss in our community and an emotional hurdle for us.  Although the circumstances of the journeys were very different, the deaths of Katie almost 4 1/2 years ago, Logan 3 1/2 years ago, Nina 2 years ago and now Daisy remind us of the battle we are in (no matter how normal we try to conduct life with a medically fragile child)…it hits close and it hurts.

Once again….my response is to “circle the wagons” and protect.  This, however, has been difficult to do with our out-of-control schedule that literally has us up at dawn and going, going, going until we flop in bed at night.  The life of our family has us going in many different directions these days and it has been difficult for this mama’s heart to be motivated.  Adding insult to injury, I’ve had three interactions in the past week with agencies involved on some level with Rudy’s care that have made my blood boil.  Interactions involving incompetencies, inadequacies and inefficiencies that just shouldn’t BE!!!!  As much as I’d like to be the “Norma Rae” of my world, I’m tired and I just want to take care of my family without added hassle upon hassle with a few hoops thrown in!   It seriously makes me want to pull Rudy in close, close the door and do it all myself.  ARRRRRRGH….Sad, Frightened, ROYALLY Annoyed!!!

So all of this is churning around in my heart and head when a simple, off-handed comment in an elevator brings it all back into perspective…Rudy and I were at UCLA on Monday for a couple of of routine appointments and we rode the elevator with a doctor who knew us from our original 7 month stay but is not a “key” member of Rudy’s team.  She complimented Rudy on how great he looked and how big he is getting and then she looked at me and said “Wow, you haven’t been back for a long time.  That’s remarkable!”.  That’s it…that’s all she said but it served to remind me that our situation IS remarkable!  Yes, it’s tiring and frightening at times…it can make us feel frustrated and annoyed when dealing with the “system”…but the fact that we haven’t been back to the hospital for an unscheduled stay since May of 2009 is REMARKABLE…the fact that Rudy hasn’t had any major setbacks is REMARKABLE…his slow but steady developmental progress is REMARKABLE.  We don’t lose sight of the fact that each day is a gift (even the poopy, annoying ones)…each day is remarkable.

With that said, many are wondering where we stand now with Rudy’s treatment.  Today is the last of a string of specialist appointments we’ve had the past two weeks.  Rudy met his new SB Endocrinologist on Valentine’s Day, Dr. Candido-Vitto, after Dr. Lifshitz’s retirement in December.  We like her very much.  She is in agreement with the path of treatment Dr. Lifshitz took with Rudy and will continue to do the same.  Since treatment for his thyroid issues would be the same whether we know the cause or not, she, like Dr. Lifshitz, is not recommending we pursue further testing to determine the cause.  She will simply monitor his monthly blood work and adjust medication doses as needed. Currently there are no changes (good or bad) in his thyroid function.  We saw Dr. Woo (UCLA pulmonology) and Dr. Shapiro (UCLA Ear, Nose & Throat) on Monday and both were real quick check-ins.  Again, no changes good or bad.  Rudy’s stoma from his tracheostomy has not completely closed yet and I was hoping Dr. Shapiro would be willing to stitch it closed but she remains determined to let it heal on it’s own…it could take another several months.  Since I’m eager for it to close for PT reasons and to get him in a pool for swim lessons, she suggested we try a Tegaderm-type dressing so maybe swimming will be possible this summer after all…we’ll see.

Of course, we’re always eager to hear what Dr. Harake has to say…we saw him for our routine appointment last week (we see him every TWO months now!!!!).  Again there aren’t any major changes in Rudy’s heart function…still mild-moderate valve leakage, no increase in enlargement which is all good news.  Although we aren’t there yet, Dr. Harake does think it’s time to start talking with the transplant folks down at UCLA and gather information about a possible heart transplant.  Our understanding is that Rudy would not be considered for a heart transplant currently because of his pulmonary hypertension issues but I suppose it would be wise to gather the information and start wrapping our brain around the idea now before we find ourselves needing to make decisions in crisis.  It would be a difficult and terrifying leg of this journey and one we would not consider lightly.  So, I hope we can start a conversation with Dr. Alejos and other members of Rudy’s team soon.  Dr. Kelts (Gastroenterology) is ordering an ultrasound here in SB in the next couple of weeks.to get a baseline on Rudy’s liver and spleen.  He suspects they are enlarged due to some back pressure from the heart (I think that’s what he said) given his distended belly and bulging belly veins.  Baseline information like this would also be helpful down the line to accurately assess the condition of these vital organs in the event a heart transplant is considered.

In between all the extra dr. consults this month, alotta life has been lived too!  Did I mention G’ma Jo is here?  She’s already in the middle of her 3 week stay with us…she was able to fly “outta Dodge” early and beat the wicked snow storm that hit the Kansas City area early last week and she jumped right into our schedule of  dr. appointments, SBRM graduation dinners, play practices, hockey games, soccer tourneys, drum comps, jazz festivals, school fundraiser, therapy, GS cookie booths, garage sale AND birthday parties!  Phew!  Take a look…

Love to you all!  Have a remarkable day!!

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.

…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 🙂

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…

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