The last week of school upon us and life has been fun and full. The kids are looking forward to school ending this week and the days leading up to that seem full of field trips, parties and other celebrations. Tonight, we will join the ranks of proud parents as we attend Wilson’s 6th Grade Promotion—Jr. High is just around the corner.

In the midst of all of this, Rudy has been laying low. So low in fact, that we neglected to note his 8-month birthday here on Rudy’s Beat yesterday. Another milestone to note! He’s quietly getting fat and (we think) happy. This morning at the pediatrician he weighed in at 13lbs, 12oz, so his solid feeds are doing what they’re supposed to. This still has him well below the 5th percentile on the generic growth charts, but referring to anything to do with Rudy as “generic” seems out of place. He’s right where he needs to be on the Rudy Chart.

But enough for laying low—it’s time for a return visit to UCLA. Wednesday morning, Trish and Rudy will leave at 4:30am to head to UCLA for a 6:30am admittance. Rudy is scheduled to be the second procedure, but they like to have patients on hand and ready in case scheduling changes. This will be Rudy’s pre-Glenn catheterization, where Dr. Dan and Dr. Harake will enter from an artery in his groin to get a good look at the heart (an angiogram). They’ll measure pressures and flow in different areas and can even take some interventional steps in the event certain things are amiss. The team will use the information gleaned to develop a game plan for the Glenn, so we’ll await word as to how the next weeks are going to unfold.

Caths are commonly outpatient procedures, but in Rudy’s case we are being prepared for him to stay over one night for observation. As you feel led to pray for Rudy, please pray specifically for this—the procedure itself doesn’t cause us as much anxiety as simply having Rudy in the hospital for any length of time. From his history, we can’t help but worry if he’ll pull some kind of a trick or have some numbers amiss that will lead to another extended stay. Apart from this, we’re praying that a clear plan would emerge as we’re approaching June somewhat tentatively; unsure of when the surgery will take place and therefore unable to plan out very far. So, we’re looking forward to some clarity, but in the meantime we are so grateful for how special it’s been to have almost four full weeks at home with Rudy.

We’ll post updates as things unfold on Wednesday. I’ll be here in Santa Barbara. Fortunately, I’ll only have to battle preoccupation in my office for part of the day as I’ll be joining Livy’s class for a field trip at the zoo. It’s a welcome distraction and, given the how much of our absence the kids have had to accept this school year, I’m looking forward to time with Livy and her friends. I already have a good zoo joke ready to go: Why is a giraffe’s neck so long? Because it’s head is so far away from its body! Those first graders don’t even realize the comedic gold that awaits them.

Thanks for praying. Go, Rudy, Go!

We’re settling back in after our Memorial Day Weekend excursion.  The big kids are now in their last two weeks of school and readily reminding us of it.  Rudy had a visit with our local cardiologist this week who feels it would be wise to schedule the Glenn sooner rather than later.  As Rudy’s scheduled for a heart cath on June 3rd, he even went as far to inquire whether we just wanted to get admitted right then for the surgery.  Kind of sobering how close we are to the next round already.  Our preference would be to bring the school year to an end for the big kids without another Rudy episode–let alone we’d really like to have our dedication celebration before the next round.  This will hopefully be the game plan.  As it stands now, there’s not an urgency to the degree that a week or two would make a drastic difference but if the cath tells us something else then we’ll respond accordingly.

So for now, we’re going ahead with plans to celebrate Rudy on June 12th, 6:30pm and hope that everyone in and around SB (or beyond) will come and join us.  We envisioned having a bit more room to schedule this as a homecoming and end to the first chapter of the journey, but with the second close at hand, it seems even more timely to gather friends and family together to send Rudy off.  We’ve created an Evite page with information and to give us some idea of who’s coming.  If you’re reading this, you’re invited to come and to spread the word.

We’ve been wanting to have a dedication/celebration/homecoming for Rudy ever since his first discharge from UCLA.  We even had a date scheduled in May until his unplanned re-admittance.  As unpredictable as life is on the Rudycoaster, we’re going to give it a try.

Perhaps a more formal or fancy invite will come together via the web or other media, but for now please save the date:

JUNE 12th, 6:30pm

Santa Barbara Community Church

1002 Cieneguitas Rd., Santa Barbara, CA 93110

On-site reception to follow.

As so many people have embraced our family and have been praying for Rudy, we’d love to gather together, celebrate him and pray for the twists and turns yet to come.  I hope any and all who feel so led will join us.  As best we could, we checked this date with Rudy and he seemed amenable, so here’s hoping he doesn’t get fickle and make his own plans.  We’re expecting to do the cath during the first week of June so we’re hoping to have this celebration before we embark on the Glenn.

Looking forward to celebrating God’s faithfulness to our family!

Rudy gave me quite a start this morning as I was going through the morning routine of meds, suction and breathing treatments.  On coming back to his crib at one point, I noticed his trach was at a very peculiar angle off to the side.  It took a bit to figure it out, but his little wimpers made it clear that he was no longer breathing through the trach.  Perhaps in his displeasure over the morning routine, he managed to undo the velcro on his trach ties and pulled the thing just about all the way out.  All things considered, we stayed pretty calm–but Trish sure got up quickly and popped the thing back in there while I held him still.  People often note that we’re not easily rattled by some of the things our kids attempt (climbing to the very tops of trees, skateboard ramps or jumping off the roof into the pool) but I’d prefer Rudy not attempt a stunt like that again until the doctors say it’s time for that trach to come out.

Followers of Rudy’s Beat often ask us how the Mannings are doing.  They have been on our hearts this week as Tuesday would have been Katie’s first birthday.  I recommend you click over to their blog and read Alan’s post this week.  Though we certainly regret the circumstances in our families that brought us together, we sure are glad for such friends.

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.