Fighting Numbness

Little Nina was laid to rest today; a very emotional day, but one of those horrid events that we couldn’t stay away from.  We don’t know Todd and Rosy well—we might have lived a couple miles away for a lifetime and never met, save for the common struggle of having critically ill children.  Despite very little history, the shared battle makes for a unique bond.

This a club of unwilling members and no two struggles are alike, but there is comfort and perspective that we draw from someone else’s struggle—sometimes its just the look of unspoken understanding a guy like Todd could give me over a cup of coffee, other times it’s a specific insight from someone like Rosy processing her struggle.  A couple of weeks ago, Rosy spoke of a feeling of numbness that had come over her in the midst of the intensity.  That gave words to a lot of what’s set in over the last two years—there are moments of emotion like we never imagined—but also stretches where so much is going on that I find myself shutting down and going numb.  Because there are things I don’t want to think about.

I go numb when I find myself at a funeral wondering if that will be us someday.

I go numb when I realize that I can’t readily recall the names of all the kids we’ve known of that have died in the last two years.

I go numb when I find myself wondering about whether my son will survive instead of whether he’ll like soccer more than basketball.

I go numb when I’m holding a ruler—because it might lead to me thinking too much about how a tiny 2.6mm shunt is all that’s providing oxygenated blood to his body.

I go numb because I don’t know whether to be immensely proud or terrified when a doctor tells me that the course of treatment is unclear because most kids with Rudy’s condition and his complications don’t survive anywhere near this long.

I go numb when I’m at UCLA and overhear a stoic bald eleven-year-old telling of the double-bind he’s in: “I can’t stand the taste of the chemo, but I also can’t stand to see my Mommy cry if I don’t take it.”

I go numb when the cashier at Rite-Aid asks if I’m OK because my joy over finding a great bulk deal on children’s aspirin has quickly given way to tears because I’m actually wondering if he’ll live long enough to take all of it.

I go numb when I think of how painful it would be for my kids to have to go through what Teddy’s had to experience in losing his sister.

I go numb when I realize that doing everything “right” gives no assurance of any desired outcome.

As one not given to routines, in maintaining the daily schedule of 11 medications, feeds, care and treatments, I start to picture how great it would be to be free of all this…and then go numb when I realize the heartbreak that would entail.

I go numb when I start to wonder about what the end will look like…will we know far ahead of time or will it come out of nowhere?


Sometimes it’s just too much for the brain and heart to process, so perhaps going numb is a defense mechanism that spares us some agony.  But I’m also glad that Rosy also shared her friend’s challenge of:  “Don’t go numb; just love.”  Because that’s something we can do.  It’s something we have been trying to do and will continue.  It echoes Dr. Rick’s words on the patio outside the hospital last fall as we grappled with the news that no further medical interventions were possible:  “Go home and love ALL your kids.”

There’s so much of this we can’t figure out (and never will).  Looking at it too long brings no clarion insight and probably just increases the uncertainty and terror.  But we can figure out the love part.  So that’s what we aim to do for Wilson, Max, Olivia, Rudy and those we encounter around us.  If I think about the other families, like Todd and Rosy, that I’ve drawn inspiration from, it’s the courageous act of loving in the face of the heartache that seems to help them survive.

We were struck by the prayer during today’s service that joy would be restored to the Fredeen family—simply because the tragedy seems so overwhelming.  But presuming that God’s grace is even more abundant than this, it must be possible.  And I suspect the resolve to love and not go numb in all of these circumstances is what helps one limp through with some semblance of sanity and ultimately, joy.


Rudy was ready to be the mascot for Livy’s Brownie troop’s Austria presentation at Thinking Day yesterday, but stayed home due to the rain. We still had to post this for reasons of sheer cuteness and to warm the hearts of all our readers back in Austria (Rudy’s HUGE over there). Rewind the clock about 42 years and you pretty much get my childhood (because all the kids dressed like this in New Jersey, Mom!)

[I also trust you’re impressed with the standing trick. If we put the little yodler against the back of the couch and help him lock his legs, he can stay up for a good 30 seconds–but good luck getting him to keep the hat on that long!]

Sent from my iPad

Happily doing our time

Rudy and I have had an uneventful stay here at UCLA. We got our room assignment around 2pm yesterday and Rudy had fun riding all the way there sitting up like Caesar on an inspection tour.

We had to repress some habitual and territorial instincts as, for the first time, our room was not in the 5th floor ICU. We’ve ventured onto the 3rd floor and discovered they have lots of doctors and nurses to charm here too! I can’t get over how quiet it is–we’re tucked into the coveted room at the end of the hallway with a nice view down Westwood Blvd. We have yet to see another patient but the extensive decorations on the doors and scary equipment and labeled carts (chemotherapy/transplant/etc), make me grateful to be an easy short-term case. We’re just two guys in our man cave logging some sats…

Being in a new place doesn’t promise anonymity. Our nurse finally had to ask me what was going on as there seemed to be a disproportionate number of docs stopping by and checking over the chart, considering the procedure. Good to have fans check on Rudy, but I had to laugh at the way they’ve robbed me of one of my favorite hospital pastimes–secretly absconding with needed medical supplies! It’s a learned heart-parent behavior to create secondary procurement agendas around hospital visits. Sometimes you need to play cat-and-mouse, asking multiple staff for the same thing so you get sufficient quantities–some have even been known to hide things and play stupid so the staff has to go get more. The whole game gets much easier if you have a familiar unit and your cute kid has several nurses on the take.

I guess we’re not as sly as we thought because I was just contemplating the prospect of working a new floor, when a certain high-placed physician just came out and asked if I had any supplies at home that needed to be replenished. Realizing the gig was up, I handed over my list (those who know my wife would not be surprised that I was dispatched with an actual list) and in short order my quest was complete. Not sure what to do with all the free time now…

Rudy slept well. We woke up early and watched the sun come up and the campus come to life below the window. Nurse Amy promised me the worst coffee in the world and may have delivered (but it took me two cups to come to this conclusion). We’ve been reviewing the doctor parade as it marches by. The ENT team has been by and gave their thumbs up, so discharge will be coming, though I think Pulmonary and Cardiology will probably come by the reviewing stand before we go.

King of all he surveys and then a happy wake-up! Ready to head out!

Sent from my iPad

Prepping for UCLA and Remembering Nina

It’s back to UCLA tomorrow to downsize the trach.  We’ve got a 7am check-in for what should be a quick procedure at 9am.  Everything should be pretty straightforward in the OR, but the team will want to monitor him for at least 24 hours in the ICU afterward to make sure everything looks right.  It’s been awhile since I did a hospital shift, so I’m giving Trish a break and going to camp out with Rudy.

While any trip to the hospital with Rudy raises our anxiety and concern, it all pales in comparison with the news we got that little Nina went to heaven this morning.  Once again we’re reminded that parenting can contain agony in far too many flavors.  There’s nothing that can be said to bring Nina’s suffering into perspective, but I am so grateful that in her six years she was on the receiving end of such attentive and passionate love.  We marvel at the courage parents like Todd and Rosy are able to muster in such heartbreaking circumstances.

Peace, comfort and grace.   Updates tomorrow when we have something to report.

Happy Valentine’s Day 2011

On this special “day of love”, we send  OUR love to all of you – our dear family and friends who are sharing this journey with us!!  Rudy’s life could be defined by his heart defect and limitations but  those who know him personally or through Rudy’s Beat know that truly his life is defined by LOVE!  How deeply blessed Rudy is to have you in his life…and we’re pretty doggone blessed to!!

We Love You!!! Happy Valentine's Day!

 As is tradition in our household, the singing of “Will You Be My Valentine?” was in full swing last night and this morning.  You may recall when we introduced you  to this little holiday diddy back in 2009.  Well, the kids produced a remix for this year’s enjoyment!