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.

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.

For the past few weeks, another family here in town has occupied our thoughts and prayers.  We ask that you join us in praying for God’s grace, comfort and mercy during an unspeakably difficult time:

http://prayingfornina.blogspot.com/

We love you, Todd, Rosy, Teddy and Nina.

 

Trish, Rudy, Max and Livy made a trip down to UCLA yesterday.  No appointments, no clinics, no emergencies…just a chance to share some love with families who will be spending their Christmas in the CTICU this year.  The memory of our time there two years ago is sacred, profound, and yes, even joyful.  [Remember this, this, and this].  HIPA rules prevent just anyone from waltzing into the ICU to spread holiday cheer, but that’s one door that flies open for Rudy and it was special to see so many of the people who fought so hard for him during his seven months there.  Dr. Robert and Nurse Filma took the little Christmas deliveries and made sure they got delivered to the families of the little fighters on the unit.

The reality of having a critically ill child is that life can be upended at any moment and can feature unplanned returns to the hospital that aren’t sensitive to holidays.  Given the way Rudy’s journey started, we’re very fortunate that this hasn’t been part of our experience.  Being home at Christmas means we get to experience special days like we did today at the Rescue Mission’s Christmas Feast–another moving effort to embrace people who might be having a difficult Christmas of their own.  Here’s Rudy enjoying the sunshine and supervising/greeting people as they came through the gift line:

 

We’re so grateful that it looks like many of our little buddies will be spending Christmas at home, but for those families that are gearing up for a hospital Christmas, I’m re-posting this little Rudy’s Beat tradition.  May God Bless you all, keep you safe, and bring you home soon!

 

With Apologies to Clement Clarke Moore

‘Twas the night before Christmas, in the CTICU on 5 East,
A few creatures were stirring, because they never cease;
The fluids were hung by the bedsides with care,
In hopes that all would remain peaceful there;
The children, not “nestled” but comfortable yet,
Saw lots more than sugar-plums thanks to the meds;
Dr. Ryan in his coat, Dr. Andy in clogs,
Kept quiet watch as they checked patient logs;
Far up on the roof there arose quite a clatter,
But they wouldn’t have heard what was the matter.
Nurse Susan at her station would not have noticed,
Her attention on Rudy was lovingly focused.

The flat helipad with its lights flashing on top,
Made landing much easier than most other stops,
The touchdown was simple, but the rest was quite hard,
For patients and visitors with no proxy card,
But this one was different and he knew some tricks,
The card readers and elevators were no match for St. Nick.
He stuffed his sack fuller than he ever had yet,
For scores below worried that he might forget;

To the 5^th Floor through the stairwell he came with a bound,
Right through the alarmed door with nary a sound.
Yes, dressed all in fur from his head to his foot,
But he cleaned himself up because they don’t allow soot.
Into the PICU he walked without ringing,
Quietly as the pumps and the vents did their singing.
His eyes kept on twinkling; his dimples still merry,
But tender concern showed behind that nose like a cherry.
While the nurses’ attention was never averted,
Somehow he slipped into each room unobserved,

He’d given up the pipe as he’s now much the wiser,
And at each door he carefully lathered with the sanitizer.
The belly like jelly still shook only slightly,
As he kept his voice quiet and laughed only lightly;
That wink of his eye and the twist of his head,
Assured the small patients they had nothing to dread;
He spoke soothing words along with his work,
Being careful to turn with nary a jerk,
After carefully laying what he’d brought on the bed,
He’d give a small whisper and a pat on the head;
Without any rush he went door to door,
Making sure he missed no one on the entire floor;

He returned to his sleigh and offered a prayer,
That these little ones wouldn’t be much longer in there,
As he prepared to alight from this special stop,
The children were assured he hadn’t forgot.
So he loudly exclaimed as he drove up into the air,
“Be home next Christmas, and I’ll see you there.”

Thanks for all the notes and comments.  At some point we’ll have to get on a longer “how we’re feeling/what we’re thinking” post in light of the recent developments, but in the meantime the holiday season gives us lots of things to enjoy.  We’ve got some posts coming on the fun we’re having.

I appreciated a Rudy’s Beat fan (thanks, Christie!) who forwarded me this NPR link about a long-term HLHS survivor.  If one hero isn’t enough, you’ll probably recognize a second, Dr. Brian, who gets interviewed below.  The impasse we’re at with Rudy’s condition can give rise to all kinds of questions in our heads.  I’m glad one of them is not whether we’ve got the best team.

A longer post will come in the next day or so, but just wanted to quickly report that Trish and Rudy were discharged late this morning.  Rudy was cranky up until the end; but that changed the moment he got into his car seat.  Suddenly he was all smiles as he looked out the window and made his escape.  It’s OK with us if he hates the hospital–home is much better!  At the same time, we’re so grateful for the UCLA team, the careful attention they pay to Rudy and the encouraging friends they are to us [not to mention the hard-to-find hospital loot they send us off with in good supply ;-)].

Trish will probably wait out the LA traffic for a bit, but we can’t wait to see them.  It was fun to hear Rudy squawking it up in the background when she called me from the car!  I guess the ability to vocalize more is readily evident!