I was intending to post about a couple of things today, but that’ll have to wait.  Life with Rudy at home has been good.  He’s had a busy schedule with four doctor appointments in the last two days–we are so grateful for the attention that’s being paid to him.  But more on that later.

I never expected my morning routine to include a roll call of sorts, but essentially that’s what I do when I turn on my computer.  I check on a number of kids every morning by going to their blogs and seeing if there are any updates.  It often serves as inspiration and encouragement to hear from people who are in similar situations.  Unfortunately, there are mornings where it brings tough reminders of the reality we are living in.  That’s what met me when I checked on Kayleigh, whose 11-month battle came to an end.  I thought hard before sharing the link because this is tough stuff, but her father Adam’s writing is so stirring I haven’t been able to shake it all day.  It expands my notion of what walking in faith is all about;  trusting God without the assurance of a favorable outcome.

Once again, I am both impressed by the courage parents can summon and deeply regret the circumstances that evince it.

Some of you might have missed this tribute to Trish when it aired on TV, so I figured I’d post a link here.  Obviously I’m not the only one who recognizes her brilliance.

While I’m posting, I should say how much I appreciate kind feedback about my poetic gifts, but need to clarify that I didn’t write the poem in yesterday’s post (note the attribution to “author unknown”).  While I’m confessing, I should also add that the Mother’s Day wining and dining Trish requested consisted of McD’s for breakfast (but I brought it home so I thinkg I get credit for breakfast in bed) and then In-N-Out for dinner (which got her to change out of her pajamas at 6pm).  All told, our bill for the day of dining out was about $44.38 (but you’ll have to ask Trish because she handles the receipts).  We lead a charmed life.  Call me Captain Suave.

Mother’s Day has a new significance for me this year.  I would have always said I live with a great one, but in the last year my concept of greatness has been enriched.  Yes, there’s her organization and creativity; her willingness to serve and volunteer; her concern and her laughter; her daily sacrifices and priorities that become very clear when I’m left to handle them myself for extended periods of time.  We’ve reaped the benefits of motherhood in our family and tasted much of the joy and fulfillment over the last 12 years.  This year we’ve caught a glimpse of how much it can demand—and in trying circumstances Trish has been an amazing example to all who have been fortunate enough to observe her.  I’m the lucky guy who got a front-row seat.

We tend not to do much of the traditional when it comes to such celebrations.  Like I do every year, I floated the idea of brunch at the Biltmore or Bacara and got shut down.  After my shocking discovery this past week, I don’t think she would twist the dagger and suggest McDonald’s, but we’ll probably keep it simple and not spend our time out waiting somewhere.  The kids had various projects in the works at school, but the unexpected day off due to the Jesusita fire means they weren’t able to bring them home.  Max had additional consternation yesterday:  he started a small craft project to make a substitute gift, got interrupted by the beckoning swimming pool, and returned to it later to discover that the conscientious and efficient mother he was trying to honor had cleaned it all up.

But we do have our standby gift ready.  Several years ago, the boys and I made Trish a garden fountain out of some flower pots.  It brought a few weeks of peace and tranquility to the back yard until an errant skateboard put it out of commission.  It was then added to the list of “things that only take Rolf 10 minutes but will take him a year to actually do”.  The next year’s Mother’s Day gift was…to fix the fountain—until Livy stuffed the pump hose full of gravel after a few weeks’ enjoyment.  The next year it got hit with a football.  You get the picture.  I’m not sure Trish recalls that I packed up all the parts when we moved, but after a year’s hiatus the kids and I fixed the fountain again.  Only cost me $4.23, reminding you once again of my trademark ability to woo my wife.  No ladies, I don’t have an eligible twin.

I actually did go out in search of something other than my usual goofy card this year, but couldn’t find any “serious” ones that spoke to the journey we’ve been on this year.  Lots of words and pretty pictures, but none captured it.  So, I went with goofy and wrote in what I wanted to say.

I am including the poem below as a Mother’s Day tribute.  There might be parts of the heart community where it’s reached cliché status, but it does speak to so much of what we’ve been through.  I offer it first and foremost, as a tribute to Trish, but also to the heroic moms we’ve been introduced to over the year who have provided inspiration and comfort as they contend for their kids.  As I read it, I especially remember those mothers whose little ones aren’t with us anymore—may the admirable grace and strength they fought with be met with comfort and peace today.

 

The Day I Became a Heart Mother

One day my world came crashing down,
I’ll never be the same.
They told me that my child was sick.
I thought, “am I to blame”?
I don’t think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I’ll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child’s bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can’t know your ways….no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he’s here,
but my heart begs, “PLEASE let him stay”!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, “will he be alright?”, to watching him reach out his hands.
With every smile my heart just melts, despite life’s harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It’s the door to his beautiful heart).
God must have known how much I’d love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day…….
When I became a “Heart Mother”.

– Author Unknown

Drama seems to surround Rudy even if he’s oblivious to it.  Trish made it home after an uneventful trip and Rudy has been asleep almost continually since he’s been home.  We had a good visit from Jane, our visiting nurse and she gave him a thorough checkover and made sure we were all clear on the discharge instructions.  We’ve been giving him all of his feeds through the G-tube at OT Nicole’s suggestion to just let him relax.

Rudy’s brothers and sister are excited to have him home, but this evening we’ve been focusing a good bit of attention outside the house tonight.  The wind shifted and the fires are headed our way.  We don’t seem to be in any danger, but the air is such that we’ve had to close the windows making for a rare night where we wished we had air conditioning–or maybe even long for the uncomfortably cold climate in the ICU.  More than anything, it’s tough to go up on the roof, see the flames and think of friends’ addresses within the rapidly growing evacuation zones.  Gonna be a long night, but Ithink we might be losing sleep over something other than Rudy.

Trish just called to say she’s loaded and rolling!  OK, more specifically the car is loaded–I’ve learned I need to make these kind of things clear in the recovery community.

They are on the road and driving and WE CAN’T WAIT to have Rudy home.  Trish said Rudy is looking out the window with eyes wide open in wonder.

Yahoo!!!  Less fanfare than last time, but no less excitement.

drat!

another curveball.

not today.

more later.

DRAT once more.

As I write this, Trish is just a few exits away from UCLA (the last couple miles on the 405 can make the otherwise smooth drive interminable).  I spoke with Nurse Courtney this morning and she reported that everything is a go to go through the discharge process once Trish gets there.  I’ll be by the computer to give updates on the journey back home.  Here’s praying that Rudy has no idea what’s going on until he’s well underway.

It bears mention that this is NURSE APPRECIATION WEEK.  I’m not sure there’s a group our family has greater appreciation for.  So I’m going to re-watch the slideshow of Team UCLA a few times today.  Any nurses checking this should track down Trish today as the “Queen of Thoughtful Gifty Things” will not disappoint.  Many thanks to all our Superstar Nurses!!!!

Time for a quick post as we’ve got fire again in SB.  The lights just flickered here at the office so I’ll rush to get something up in case we lose power.

I just called down to the ICU and got a good report from Nurse Dawn.  She said that Rudy is calm and happy.  His sats have been holding right where they need to be.  He got his last antibiotic dose this morning and the last set of labs was perfect.  The cardiology team rounded this afternoon and concurred with the discharge plan, so we’re set to go.

Trish, having taken today to get rested up, will make the drive to go fetch him tomorrow.  Turned out she just had a virus which seems to have run its course.  I slept well in my own bed so we’ll be ready and energized to have Rudy back home–the big kids can’t wait.  Stay tuned.

 

Final footnote–there might be some of you who might be wracking your brain wondering where you’ve heard of Nurse Dawn before.  Check out more about her other work here.  Rudy’s got himself a celebrity nurse!

I’m glad to say there’s not much new to report, other than Dr. Sonal being one of the most compassionate practitioners of medicine ever.  Rudy was put on pressure support last night and in short order the vent alarm was ringing due to the leak around his trach (in this case a leak is not a negative thing).  Nurse Bobby and the RT tried to work with it for several hours until they finally determined that Rudy likely didn’t need what little help it might be giving so Dr. Sonal gave the OK to shut it off at 12:30am.  I enjoyed a peaceful six hours of slumber–which qualifies for “sleeping in” in the ICU.

Today brought a very good omen as we found ourselves in the care of Nurse Trina, who oversaw our first discharge.  She’s on for the next 3 days so we’ll hope the precedent holds.  Rudy’s had a calm morning and it looks like the previously stated plan for Wednesday Friday is still in place.  We had a good feeding session with OT Nicole where he ate a full 10 spoons of rice cereal.  Hard to believe it as we mixed it with the formula (which tastes like crap), but it seemed a new and interesting experience. 

In the midst of things, I’m very pleased to be able to help Trina fix her computer as it seemed to be plagued by viruses.  I suspect she thinks I’m much more tech-savvy than is actually true, but if she handles the viruses in my kid, maybe I can help a bit with those in her laptop.  If you’re reading this, Trina, then maybe my fix worked.  In case it didn’t work, I won’t say anything else nice about Nurse Trina as she’ll probably be mad at me and won’t be able to log on and read it anyway.

I said I’d leave at 1:30 and it’s now 2:30, so the little guy has worked his magic again.  It’s just so tough to pull yourself away.  In this instance, I’m glad to be torn because he’s so alert and engaged.  As Trish is feeling a bit under the weather, we might leave Rudy in the good hands here on Tuesday and rest up for the second coming back home in Goleta.

I better get out of here now.  Really.  I mean it.