Rudy’s Letters

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This has been a good weekend.  Fun times with the kids (probably some of the last pool weather we’ll have), and we also made progress on a number of house projects we wanted to get to before our attention shifts to LA.  Trish is displaying her usual organizational flair, trying to address details that may not get attention between now and January 1st.  I’ve been humming Christmas carols today—probably because of the notes I had to write so that she could mail all of the family Christmas packages.  Rudy isn’t the only sick person in our family.

 

I bought a kayak last week so I could sleep better.  A few dear friends have been concerned about my restless nights and suggest exercise.  Going to the gym or riding my bike in traffic are not peaceful environments, so I figured getting out on the water would be more tranquil.  So Saturday morning I tooled around the waters of Isla Vista with the sea lions until I couldn’t resist the call of the oil platform “Holly”.  Made it all the way out and got to scrub off crude from bow to stern as my reward.  Still slept lousy by the way, but nice to have some time for personal therapy, prayer and reflection.

 

”Hypoplastic Left Heart Syndrome” is a mouthful.  Whether I’m typing it or saying it, it’s cumbersome; if not for reasons of syntax then for the weight the words have come to carry.  Understandably, it is more efficient to reduce them to an acronym but it seems that the medical community doesn’t have consensus on this.  “HLHS” is simple enough, but I’ve seen variants of “HPLHS” (long, but since the first word has five syllables, maybe it deserves two letters) and “HPHS” (as hypoplasts can only occur on left side, perhaps the “L” would be redundant).

 

HLHS.  The first thing I think of are the gray t-shirts of apathetic teenagers chugging out laps in a high school gym class somewhere (“Highland Lake High School”?  “Heartland Lutheran High School”?).

 

HLHS.  A good acronym is one that requires no explanation (when did you ever have to explain ASAP, UCLA or IRS?).  This is where HLHS really bogs down.  Other than specialized realms of the medical community, I’ve never tossed out Rudy’s acronym in conversation without having to spell out the whole term to the puzzled looks I get.  Not like “Hypoplastic Left Heart Syndrome” does that much for anyone; I usually need to include one of my layman’s definitions (my baby has half a heart) to see an expression of understanding that quickly changes to a look of compassionate concern.

 

HLHS.  For some reason the whole acronym is taking some getting used to for me.  Rudy isn’t born yet. I don’t know if his hair is straight or curly, I don’t know if his eyes will be the same piercing blue of his brothers and sister, yet I feel like he’s been branded with an ominous moniker—HLHS.  These letters will be a big part of his life and a large part of our focus, but I pray they define him only in part and not in totality.

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5 Responses to “Rudy’s Letters”

  1. Michelle Manley Says:

    Oh Rolf & Trish…I’m just really catching up with your news. I’m on sabbatical this summer (July – September), and we’ve been travelling in the Northwest and Colorado for 6 weeks. Words fail, of course. 2008 just seems to be a year dripping with grief, but as I can, I pray on with hope in the God who sees and knows so much more than me. I will certainly join your prayer team and keep you–each one of your brood–before God who is sufficient for all we need. Much, much love…Michelle (and family)

  2. Mel Burzynski Says:

    Rolf and Trish,

    While I know it must be hard at times to write about all the things going on in your lives and your family’s, I thank you both for sharing this. My prayers continue for you all and are now more specific to Rudy’s needs as expressed in your notes. I just wish there was more I could do. (If we lived closer, I would give you all our baby stuff that we are finally getting rid of! )

    I can understand your feelings re: the brochures. Those things suck. Doug recalls that when our doctors told us that at age 15 months Ava might never walk, I went into a fit about everything. Then, when we went to another dr when Ava was 18 mos and they said she was probably mentally retarded (can they really use THOSE words still in today’s ‘PC’ world?) I got even more angry. Most of the anger stemmed from this incident because the neurologist hadn’t even seen Avalon yet.

    All this said, I wish I could send a video of Ava at age 2 1/2 running around, taking her soccer lessons, chasing her brother so she can “tag” him…to say that I thank God every day for prayers answered.

    I will continue praying for you. And, if Rolf continues to be restless, tell him to think of “Hammer TIME!” That man always put me to sleep!!!

    Love to you all,
    Melanie and family

  3. liz horvath Says:

    I am a former coworker and friend of vicky and alanmanning mom to katie manning . I came across your wordpress from one of the posts . I hope all goes well with your little rudy. I will keep him in my prayers and will keep looking to check on you guys. liz horvath bridgeport,ct

  4. Cynthia Williams Insko Says:

    Rolf, I was messing around on facebook tonight and came across your news about baby Rudy. Know that you and your family are in my prayers. Praying too for you to have some peaceful sleep.
    God’s peace that passes all understanding to you,
    “cindy” from Madison High School

  5. Fred Elliott-Hart Says:

    Rolf & Trish, thanks so much for these posts. It’s good to know what you are going through on the ground. I am praying for you and the kids, that God’s grace would be abundant all along the road, and that he would see Rudy through this. And that Rolf can find a non-corrosive, grease cutting cleanser to cut through the crude on the kayak week after week.
    The peace of Christ, Fred Elliott-Hart

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