Where has the week gone?

Fun at home!
Fun at home!
Hello dear friends!!!! 
The lack of posts this week is less an issue of having no information to share and more due to the fact that life with Rudy home is busy…leaving little time for any of the “extras” in our routine!  I’m embarrassed to admit that I crashed on the couch well before the big kids’ bedtimes more than once this week.  Ha Ha  The adjustments continue, for sure, but the good news is that Rudy is doing well and enjoying life at home since his discharge last week. 
Our week was filled with many appointments as a  follow-up to his discharge.  Everything is checking out okay.  Rudy’s SB cardiologist feels his Glenn may need to be scheduled within the month.  My prayer has always been to have Rudy home for a full 2 months before we engage in the next open heart surgery so I continue to hope we can put it off until July.  A heart catheterization is scheduled for June 4th which will help determine when the Glenn should be scheduled. 
One of Rudy’s appointments was with a pediatric eye MD in Ventura.  There has always been concern about Rudy’s eyes wandering and, often times, fixated to the left.  This was particularly evident when he was in the hospital but I’ve noticed a distinct improvement since we’ve had him home.  The opthamologist feels there may be a need for surgery in the future but would like to give Rudy’s eyes a chance to strengthen and correct themselves.  We’ll reevaluate in a couple of years.  He’ll definitely need glasses which will be prescribed when he starts to walk but, otherwise, his eyes are healthy for which we’re very grateful!!
When we weren’t off to an appointment, I was home on the phone working to set up various services for Rudy and trying to navigate the whole insurance/medical services system.  This is not one of my strengths so I probably made it more frustrating for myself than need be.  I told Rolf last night that if taking care of Rudy is all that we had to do, the journey would be pretty simple…it’s all the logisitics and communication with outside agencies that complicates the process for me…a bit of a challenge for an introvert, I guess!
The older kids are starting to wind down their school year as the official countdown is on (just 3 more weeks!) and in that there are a ton of special school activities and programs to prepare for so they are quite busy, busy, busy!!!  It’s pretty staggering to think about the fact that Rudy came just one month after school started and is settling in at home just one month before the school year ends – forget “where has this past week gone?”…where has the school year gone?!!!!  Life is speeding by at rocket speed…with the Glenn just around the corner, I don’t imagine life will slow down anytime soon but I do welcome the lazier days of summer.  🙂 

Heavy Heart

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.

One Final Mother’s Day Accolade

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.

If ever there was a Mother to celebrate…

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

Tender Mercies

     ‘Woke up this morning praising God for the cooler temps and the thick layer of fog that rolled in late last night and pushed the fire back up the hill away from Santa Barbara proper.  His mercies are new every morning…and I’m grateful for the relief today.  Praying, now, that this window of relief will be long enough to allow the fire crews to get the upper hand.

     Rudy is sleeping and comfortable,  Rolf and the kids got all dolled up (see pic below) to go to Westmont College’s graduation this morning (Congrats Nina, Joe and Becca!!) and I’m holding down the fort here at home with Rudy.   Thanks, again, for your prayers and concern! 

May 9 001

Let It Snow, Let It Snow, Let It Snow

As Rolf mentioned earlier, the winds shifted late yesterday afternoon and the firestorm raging in Santa Barbara started heading our direction.  As a result, we woke this morning to a thin blanket of ash on everything.  Our kids have never experienced the joy of a snow day before but they came close today when they bounded through the door just minutes after we sent them off to school on their bikes announcing “Mom, Mom School’s closed!”.  As we watched the ash fall from the sky it  felt like a snow day. ..okay, not really, but it provided some excitement at the start of our day nonetheless. 
As you can imagine, today was kind of disorienting.  I spent the day getting Rudy settled back into the home routine again all the while making mental notes and contemplating how we would evacuate this little guy and all his equipment if we had to.  Right now the evacuation WARNING (not yet mandatory) boundary ends just east of us at Fairview Ave. – about a mile away.  At this point, fire isn’t a threat to us…what would prompt me to evacuate is the air quality.  So, we’re keeping an eye on the news coverage, keeping a close eye on Rudy and will come up with a plan of action should we get the reverse 911 call that alerts us to any evacuation warnings issued in our neighborhood.
Rudy slept almost the entire day…like the rest of us, he is hot and sweaty and we are doing our best to keep him cool but it’s difficult because Rudy is somewhat housebound and we’re kind of living in a furnace with the doors and windows closed up tight.  Rolf was able to take the older kids down to the beach south of Santa Barbara  this afternoon and the kids enjoyed a break from the less than favorable conditions here in Goleta.  Although wildfires are not uncommon in our community, the current situation is the worst long-time Santa Barbara residents have seen.  For us it’s just  disorienting and uncomfortable but our hearts are burdened for the thousands this firestorm has displaced and for our friends who are and will be legitimately threatened before this thing is under control.  Currently the major hot spots are in unpopulated areas high above Santa Barbara…we are praying for cooler temps this evening and for the sundowner winds to be silenced.  Sundowners pick up in the evening and are hard, dry winds that push off the mountain ridge toward the ocean…these winds have fueled the fire the last couple of days pushing it toward the populated areas of Santa Barbara that lie between the mountains and the coast.  We’ll keep you posted as things develop…
Rudy’s discharge yesterday was, once again, met with lots of well wishes from our dear friends in the PICU/CTICU as we made our way down the hall.  As always, we are so grateful for the TLC Rudy receives at UCLA and we pray these next several weeks before his Glenn will be spent at home getting bigger and stronger.
Discharge Day 5-7-09 Dr. Bulut, Dr. Brian & Nurse Jessica
Discharge Day 5-7-09 Dr. Bulut, Dr. Brian & Nurse Jessica

Home, Smoky Home.

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.