Month: September 2008

Firmly Rooted

One of the things for which I am most grateful during this time is the sense of “rootedness” we feel in Santa Barbara.  Our family relocated to the Santa Barbara/Goleta area only one year ago and I’m struck by the fact that we easily could be facing this family crisis feeling a bit isolated and alone as it does take time to make friends in a new community but that is not our experience at all…I feel so surrounded and supported by our friends in Santa Barbara – as if we’ve lived here for 20 years!  A big hug of gratitude goes out to the families at La Patera Elementary School, my sweet bible study and our community of friends associated with the rescue mission.

We moved to Santa Barbara after living in Los Angeles for 17 years when Rolf accepted a position directing the work of the Santa Barbara Resuce Mission.  One of the sweetest blessings in making the move is that the rescue mission has become more than a place of employment for Rolf but, literally, a “home away from home” for our family AND the staff and residents there have become part of an extended family to us all!!!  Our family lived at the mission a couple of months before we found and moved into our house last fall and we continue a family tradition of having dinner at the mission every Thursday (Pat and his team cook much better than I do!). 

It is such an amazing place to me…a place where miracles are in the making every day…a place where the homeless in our community are provided with hot meals and clean beds and where men and women make a courageous choice to submit themselves to a 12-month residential recovery program as they confront their addictions to drugs and/or alcohol.  These men and women, in particular, and the staff that walk along side them and facilitate their recovery are my heros!  The residents because they persevere in a life and death battle every day that is unimaginable to me and the staff because I’ve never seen such professional excellence wrapped in such compassion and love – all a picture of God’s, truly, amazing grace.

I was blessed this week by the women in the program…the residents and staff of Bethel House planned a time to pray for our family and celebrate Rudy.  It was a wonderful afternoon…the women used their creative talents in art, music and writing to honor me and Rudy,  we had an uplifting time in prayer and enjoyed the yummiest carrot cake I’ve ever had!  As I sat there watching all their plans unfold, I was struck by how very rich my life is and how very thankful I am that as I prepare to leave for LA in a couple of weeks and prepare to support Rudy in his life and death battle, I have this amazing circle of heros that inspire and encourage me.

I just had to share with you a poem one of the gals at Bethel House wrote for me and Rolf…precious!

AND SO HE CHOSE YOU

One glorious morning not long ago God was surveying His stock

Of all the not-yet-born boys in His Heavenly flock.

     He was looking for a particular boy for they had a job to do.

     It was “Parent Picking Day” and Rudy hadn’t a clue…

As to whom to choose for parents and whether he liked it or not.

Though he’d get some help from God, the choice was up to the tot.

     “Well, I know what I don’t want,” said Rudy with a sigh.

     “I’ve got no previous experience so I can’t really tell you why…

“But I don’t want parents who are Doctores or Lawyers or PHDs

“And Heaven help us stay away from the Psychologists PLEASE!”

     “Whoa there, little fella,” said God with a tender smile.

     “Don’t be dissin’ my professionals and looking down with your nose.

     “There’s always a chance you’ll grow up to be one of those!”

“What I want,” continued Rudy with some determination

(His thoughts were gathering steam, now, and he spoke in affirmations)

     “My dad must be kind and patient and very, very strong

     “My mom must be gentle and loving – within her heart a song.

“My parents should be leaders, teachers of Your word

“Shouting out Your praises, your verses to be heard.

     “My parents should be well loved by their fellow man

     “People coming from all around by their side to stand.”

“Hey, little man, that’s an awfully tall order, you’veput some thought in this

“Are you sure there’s nothing else – something you may have missed?”

     God decided to tease the boy and asked him “Perhaps you’d like your father to play professional golf?”

     “Oh No!” said Rudy disarmingly, “That’s why I choose Trish and Rolf!!”

Straight talk from a First Grader

It’s hard to believe that the first day of school was almost a month ago.  Wilson, Max and Olivia have made the transition quite well and I find myself very grateful for our situation at La Patera Elementary.  Great teachers, great families and great friends—all which combine to make getting up and going to school remarkably painless.  During these weeks, we have been doing what we can to give the kids extra attention before our focus shifts to Rudy.

 

More than classes started on the first day of school.  We also experienced what has since become the more regular occurrence of watching people stumble for words.  As we walked the kids to their classrooms in their new clothes and snapped pictures, we greeted families we hadn’t seen over the summer who, understandably, commented on Trish’s pregnant appearance.  It was easy to exchange pleasantries with those who smiled and made a quick comment as they hurried on to their classrooms, but more difficult when people took more of an interest and asked the usual questions of a woman obviously close to delivery.  The more a conversation turned to due dates and the baby’s gender and how Trish is doing, the more a sense of dread built inside me.  Not because I resented the person asking, but more out of a sense of compassion that the kind-hearted person didn’t know what they were walking into.  The longer a conversation progressed the more disingenuous it felt to withhold the reality of how we were really doing and what we were actually facing.

 

So, as I shared our story, I watched as their countenances became distressed and I ended up feeling a bit sorry for the people who had to experience that kind of turn in the conversation.  Here they were just being friendly and wanting to join in the joyful anticipation only to get blindsided by some information that left them awkwardly grasping for a response.  It isn’t what one expects—conversations with a woman in her seventh month of pregnancy are supposed to be about excitement and encouragement of what’s to come.  It’s understandable that being thrown such a curveball means the interactions don’t wrap up smoothly—it is a rare person that is able to react quickly and find the words that bring comfort and communicate the empathy one sees in the eyes.

 

But there was one person who didn’t seem to struggle for words—one of Livy’s classmates who came rushing through the schoolyard just before the bell.  She hollered out to Trish and held her arms out for a big hug and got one.  After the quick greeting and a pat on the head, she hesitated briefly and then came back in close and in a soft earnest tone said, “I hope your baby doesn’t die.”

 

As she turned and scampered off to class, her simple words stayed with us as we walked back home.  I realize that every mother of a first grade girl at La Patera reading this might be horrified and hoping this wasn’t their daughter, but the simplicity of her statement hit the mark.  While adults struggled for more eloquent ways to phrase it, this was the message they wanted to convey.  It’s what we want to, so I’m grateful for a forthright messenger who expressed it so plainly.

A Friend’s Gesture…

Dear Loved Ones,  I’ve attached below an email from a friend who lives in Nashville, TN.  She is one of the most creative people I know.  It’s funny because we’ve actually never met in person but have enjoyed an email/letter penpal friendship for over 15 years!  She and her husband have a connection to Rolf’s Stanford circle from way back.  Anyway, she offered to make a blanket for Rudy and wanted to include sentiments from our friends and family.  Please don’t feel obligated to participate but if this is something that strikes your fancy, her information is below:

 

Dear friends of the Geylings,

I am writing to enlist your help.  I am planning on making a special blanket for Rudy.   Here’s what you can do to make it special:

Please write a prayer or blessing for him or find a poem, song or quote that you would like to share with the Geylings to welcome their little boy and to surround them in prayer as they await his arrival.  Then send it back to me in an e-mail by October 5, 2008.

I will then write your words in permanent marker on a little square cloth that I will sew under some shapes for a  blanket for him.  In this way, Rudy will be wrapped up in all of our prayers!  I will also type up the prayers and include them in a special book so that they will know what you all are praying for them.  Please keep a copy of your prayer as a reminder to pray for them as they prepare to become a family of six.

Thank you so much for your help with this!  Don’t hesitate to email me or call with any questions.

Joyfully,

Emily Huff

emilyjasonhuff@aol.com

(615) 298-4863

 

My Sister’s Small World

I’m fairly certain my big sister Andrea desires to meet every person in the world and subsequently remain in contact with them.  Not sure how close she is to fulfilling her dream, but I am amazed at her ability to maintain relationships over time and distance.  To this day, her closest circle of friends includes people she went to elementary school with even though no one lives anywhere near the town we grew up.

 

I remember one of her best friends, Lisa, who I think she met in nursery school.  I can remember tumbling around the back seat of the car in the cul-de-sac at dusk outside Lisa’s house as Mom tooted the horn to get the girls’ attention.  The front door would open with wave of acknowledgement and then we would watch for heads moving around in the windows as Andi gathered up her stuff.  Being that there was usually an important conversation to finish, I can remember Lisa walking her out to the car just to squeeze in a bit more before the inevitable “Call me’s” were exchanged.  It was 35 years ago, but I can picture Lisa and Andi in their first communion dresses and maybe even in Brownie uniforms.  I remember tagging along with them to high school football games and them posing for prom pictures at our house with dates in brown and powder-blue tuxedos.

 

Given the fact that I lost contact with most of my elementary school classmates before I finished my sophomore year in high school, I marvel at the fact that Andi and Lisa have not only kept in touch, but remained close.  Lisa’s married and living in Los Angeles so we’ve had passing contact over the years whenever Andrea comes to town; the most recent being just days before Rudy’s diagnosis.  I imagine a couple things must have changed over the years, but she still looks remarkably the same and, to my ear, the timbre of her voice sounds just the same as it did back in New Jersey.  Now this relationship is one of those evidences of God’s grace because Lisa is a nurse at the UCLA Medical Center. 

 

Part of surviving a severe diagnosis seems to lie in making human contact within an involved medical institution.  We’ve learned we need to become known to people so we can advocate for good care, but on an emotional level it as much for the comfort of making friends that remind us that we are not interacting with a “Medical Center”, but with people who have incredible expertise and incredible concern for Rudy.  So early into this, as I was still navigating my way through referrals and clerical channels, I took the step of e-mailing Lisa and she put us in touch with her friend Joyce who has worked in the NICU for 31 years.  In just a couple of e-mails, Joyce has provided a very comforting perspective on UCLA and the team there.  She even told us that she would request to be Rudy’s nurse when the time comes.  The waiting game we’re in right now during these weeks can become wearisome, but it feels good to say that “Joyce” will be watching out for Rudy instead of some nameless NICU staff.  Can’t wait to meet her in person…

 

So thanks, Andi!  If you ever need money for stamps or your phone bill let me know because I just don’t know when another one of your friends will prove helpful to me.  And thanks, Lisa, for being one of an emerging group of caring people at UCLA.  While I don’t think I’ll ever be glad for Rudy’s circumstances, within them there are already such evidences of God’s grace to us.  I think clinging to those is what will get us through.

 

 

What’s in a Name?

Shakespeare posed this question in “Romeo and Juliet”…”What’s in a name?  A rose by any other name would smell as sweet.”  I think there is a lot to a name.  I love names!  I love the stories behind names!  When someone has a new baby, my first question is “What’s his/her name?” and then “Why did you choose that name?”.  We chose to go with family names or variations of family names with all our kids…Wilson Thomas, Maximilian Rixford, Olivia Johanna and now Clinton Rudolf.  I LOVE our kids’ names…they don’t always appreciate the uniqueness of their names but I do because I know the stories behind their names and all the thought that went into choosing them.  Rudy’s is no different…Clinton was my grandfather and Rudolf was Rolf’s great grandfather. 

Rudolf was a painter and stained glass window maker in Austria…I am reminded of him every day as we have a few of his paintings in our home.  One in particular is this huge painting of a knight talking with water nymphs and one day a few years ago, Rolf took it out of the crate we store it in (we’ve never had a wall in our house big enough to display it) to make sure it was storing well and Wilson, who was 5 or 6 at the time, came up to Rolf, studied the painting and said “Daddy, is that a good knight or a bad knight?” to which Rolf replied “Oh, he’s a good knight!”  Wilson thought again for a minute and said, “Then why is he talking to naked ladies?”  I don’t recall if Rolf had an answer to that one (Ha).  Regardless of Wilson’s first impression of the knight or his painter, there is a rich, family history to the name.

Clinton was a farmer turned grocer in western Kansas.  I didn’t know him personally because he died when I was just a baby but to this day I love my grandfather.  In part because my grandmother and mom loved him alot and I trust their judgement and also because he made one simple comment about me that has encouraged me all my life.  Shortly before he passed away, my mom and I made the trek from Chicago to Quinter, KS to help my grandma and see grandpa as he had suffered a couple of heart attacks and wasn’t well.  As the story goes, my grandma left me playing on my grandpa’s lap for a minute and she left the room.  While she was gone, my grandpa lifted me onto the floor and was down on all fours crawling along with me as he towered over me.  When my grandma came back into the room she scolded Clint for being out of his chair – he was supposed to be resting!  Ignoring her rebuke, he sat back on the floor and said “Aw, Babe, isn’t she the sweetest thing you ever did see?”.  My grandma loved telling me that story and I loved hearing it.  Now, I’ve had alot of love expressed to me over the years by alot of different people but for some reason whenever I felt down on myself or doubted myself in some way while growing up, my grandpa’s comment always came to mind.  How wonderful it was to know there was someone out there who thought I was the sweetest thing he ever saw!!!!

In my book of baby names, Clinton means “honorable, just” and Rudolf means “resourceful, courageous”.  Given the fight he has ahead, I think we picked the perfect names!

Max’s Great Day!

Max had a great day.  Many people were touched by his precious response to not being able to play in a sports league this fall and several called to see if they could help out with rides, coaching and practices.  The main reason we didn’t feel like we could do this was the weekend commitments as the kids will likely be coming to LA regularly to see Trish and Rudy during the stay in ICU.  Then, our kind-hearted friends Jamie and Scott invited him to play on their flag football team whose games and practices are all on weekdays (who knew there were still youth sports leagues out there that didn’t require you to sign away your weekends?).  Max had his first practice yesterday and, even though I wasn’t able to be there, his unabridged recounting probably ended up taking longer than the practice itself.  Scott will have to explain to me what smelling your teammate’s armpit has to do with football, but Max sure thought that was cool.  He came out of his room multiple times after bedtime tonight to tell me one more detail about practice (each of which I had heard twice already).  At some point the rising sternness of my tone and his own tiredness got him to stay put but on my last check in, he drowsily lifted his eyelids and said, “Dad…I just wish I could have football practice everyday…”

 

Thanks, Jamie and Scott, for including Max and thanks to the many others who express concern for and extend compassion to our kids.  As focused as we are on Rudy, our prayers are also for Wilson (11), Max (9) and Olivia (6) and how all this affects them.  We appreciate your including them in your prayers as well.

Rudy’s Letters

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.

Trish’s Update 9/11/08

Good Morning Dear Friends,

A big thank you goes out to all for your continued prayers and messages of love and concern.  So many have asked how the insurance stuff is going and I held off sending another update on that until we had more concrete information to share…It looks like we are moving ahead on treatment and care so here is the latest:

After the request for care at Children’s Hospital LA was denied, Rolf and a bunch of other dear souls (including our agent who set up the coverage) got to work on an appeal.  In the meantime, the insurance company redirected us to UCLA because they are within our “network” and we felt it would be important to do our “due diligence” and get to know the UCLA team and their facility as best we could so we could make informed decisions…

Although we have not found the administrative system at UCLA to be as “user friendly” as Children’s, we have been very impressed with the medical team that will care for Rudy.  When making initial contact with the doctors we were authorized to go to required numerous phone calls with no results, Rolf finally looked up the head doctors of each department on the hospital website, found email addresses, and emailed them directly explaining our situation.  Within hours he heard back from each of them either by phone call or email!!!!  They all insisted on seeing us personally and had their “people” rearrange their schedules so we could stack them all on one day.  Once we bypassed the hospital’s system and got on the doctors’ radars, we’ve been in close contact with them.

As it stands now, I believe the appeal is still in the works but, at this point, we have run out of time and although we wish we could go to Children’s and take advantage of all their amenities and resources, we are convinced after being at UCLA that the care Rudy will receive is comparable and that is what is most important.

Rolf and I spent all day at UCLA on Monday…it was very strange to be back there as we had all of our kids at the old UCLA Med. Center…the high risk OB that will take over our case is even in the same office as my old OB (who, sadly, isn’t there anymore as I was hoping to have her involved in this delivery as well).  The Mattel Children’s Hospital at UCLA is located in the brand new Ronald Reagan Medical Center – they just moved in a month ago – and it is beautiful.  We met with the surgeon who will do Rudy’s procedure, the head pediatric cardiologist, the head neonatal pediatrician, and the high risk OB…they ran a battery of comprehensive tests and were very generous with their time…the surgeon himself sat with us for an hour explaining the procedure and answering our questions!!!  Physically it was exhausting, emotionally it was heart-wrenching but, bottom-line, we felt our prayers for peace of mind about UCLA had been answered.  The reality important for us to remember is that we had a choice between two good medical facilities when so many families in rural parts of our country don’t have any options at all!  God is so much bigger than all the confusion and clerical mistakes between the various insurance parties that held this whole process up for us…and we feel, now, that we can rest in where we have landed.

What to expect AND how to pray…

So, now, the next phase of this journey begins!  Although we don’t have HARD dates on the calendar yet, it looks like they will induce labor the week of October 21st (two weeks before my due date)…the OB wants me to relocate to LA sometime the week of October 6th in case I go into premature labor.  This is much earlier than I was planning to go down and has put me in a bit of an emotional frenzy…I just don’t want to be away from home/family that long.  I’m still weighing that decision very carefully.  If Rudy remains strong, we are going to try and deliver naturally.  Once Rudy is delivered, he will undergo a bunch of tests in preparation for surgery which will take place 2-5 days after delivery.  During that time, the children will be able to see him and hold his little hand but they won’t be able to hold him as I had hoped.  I also won’t be able to nurse him right away…they won’t let him eat for 2 weeks!  This is a BIG prayer request as many babies with HLHS have problems eating and end up with long-term digestive problems.  The team is very supportive of me nursing him when he is finally able to eat so I will work at getting my milk to flow and keeping it flowing the first few weeks.  Please pray that he’ll smoothly latch on when the time comes!!! 

Speed and accuracy are essential to the success of Rudy’s open heart surgery…the whole procedure should only last 2 hours and the work on the heart a mere 40 minutes but a lot of really important stuff happens in that time and a lot of really bad things can go wrong in that time!  Rudy will be in an extremely critical state (I’ll spare you the gruesome details) for a couple of days after surgery.  At that point, he will be moved back to the NICU where he will stay until he is discharged.  If all goes perfect, we could bring him home as early as 21 days after surgery…this would put us home right before Thanksgiving! 

To be honest, emotionally it is hard because I want to do whatever it takes to give my baby a chance at life here on earth and yet I hate the thought of him going through what has to be done – with no guarantees!  I’m reading a book right now by a mother who lost her son to HLHS and she writes, “Two of the most primal parental instincts are to keep your child alive and to protect your child from pain.  Those instincts usually do not collide.  With our baby, they did.”  IT IS SO TRUE!  I so understand this conflict of interest and it literally breaks my heart.  So, we move forward continuing to pray for peace and God’s direction as we choose to pursue life for this baby.  The practical and emotional impact all this will have on our family is starting to weigh heavy on me but then we have an interaction with one of the kids that reminds me that we are starting off on a firm foundation of love and compassion.  i.e.  Rolf and I had to sit Max down a few days ago to tell him that we couldn’t let him do sports again this fall – something we denied him last fall because we just moved into our house and we wanted to get everyone settled.  We were bracing ourselves for a strong reaction from him as all he talked about ALL SUMMER was how much he was looking forward to either football or soccer this fall.  After we explained to him that we just couldn’t commit to it this fall, he thought for a minute and said with disappointment but calmly, “I guess that’s okay.  I’d rather have a baby brother than play sports anyway”.   The children are doing fantastic but I continue to pray for them fervently as the sacrifices and stress will start to affect them more directly as time goes on.

And so, I humbly ask you to keep praying…the prayer needs are so numerous I can’t even begin to list them all so I trust the Spirit will guide you specifically as you pray.  I’m still praying for a miracle – that the left side of his heart will begin to develop and, also, that the right side of his heart will continue to stay strong even though it has to work so hard. 

With much love and gratitude,  Trish