Living in Limbo

I apologize if I’m beginning to sound like a broken record but I’m not a big fan of living in limbo.  On one hand, it seems like a pretty straight forward concept…”an uncertain period of awaiting a decision or resolution; an intermediate state or condition” and because we’ve been in this “intermediate state” as it relates to Rudy’s medical journey since 2010 AND because we’ve come to terms with not hanging our hat on the hope of the Glenn or heart transplant at this point, you’d think the whole “limbo” thing would become kind of a moot point.  The reality for me, however, is that I’m still wrestling with how that plays out in real time and I’m still exploring the complicated (and not so straight forward) layers of living in a prolonged state of limbo…primarily, of course, because it’s uncertain.

This isn’t the first time Rolf and I have lived in limbo.  There was a period of about 7 years when we left the work we were doing in South Central Los Angeles, before we made our move to Santa Barbara where we waited on God for direction.  It was a perplexing time because we knew without a doubt that God had called us to leave one situation but it was not accompanied by a clear calling TO the next thing whether it be a specific job or ministry or even location.  We moved seven times during that season and had close to 10 odd jobs between the two of us to make ends meet…it was a challenging time and I fought the temptation to be consumed by the uncertainty of it all on a daily basis.  I am a woman of order and discipline and I very much dislike it when my life is NOT orderly and disciplined.  ‘Doesn’t bode well for someone living in a constant state of uncertainty…until I learned that uncertainty doesn’t have to be a chaotic, negative thing but can be “an expression of breathless expectation” (quoted from Oswald Chambers, My Utmost for His Highest/April 29).  I grew to see the truth of that insight for our family back then and though the circumstances are different, I must believe it’s true for our family now as well…

Rudy had his 2-month appointment with his local cardiologist yesterday.  Again, nothing dramatically different was revealed in his echo…just evidence of the slow progression his heart is journeying.  Rudy’s hemoglobin is up from 21 to 22.9 (normal would be around 13).  To put things in perspective, Dr. Harake explained that Rudy’s enlarged right atrium and right ventricle are bigger than a big adult’s right atrium and ventricle would be which led to another discussion about physics which led to the warning that there is a limit to the pressure Rudy’s enlarged heart will be able to sustain.  He admitted that he just doesn’t know what will happen (there’s the uncertain part).  He hasn’t heard of a case of HLHS where the child has survived pre-Glenn as long as Rudy without surgical treatment…no doubt a miracle (definitely falls into the breathless expectation category) but, still, there is this nagging ache on which the fear of it all feeds (there’s the human nature component).  It’s difficult to separate the two realities.  As we left the examination room, Dr. H said we were doing a great job, gave me a reassuring hug and told me that he learns something new from me at every appointment…(his comment made me giggle because I had JUST had a conversation with someone about “everything happening for a reason” and how I don’t believe tragic things happen for a specific purpose but that I do believe purpose can be birthed from tragic circumstances…hmmmm, either way, it’s always helpful to keep an eye on the big picture and Dr. H’s comment was a sweet reminder of that).

So, where am I going with all this?  I have no idea…this is most definitely me externally processing but I do take comfort in the reminder that uncertainty creates room for endless possibility…I’ll keep you posted 🙂

This week has been full of work around home and more appointments but last week had something significant each day.  Here’s a week in the life of Rudy…

Monday –

Big boy Rudy waving goodbye on his way to summer school.

Tuesday –

The long-awaited family date to see Cars 3 did not disappoint! Rudy was in heaven!!!

Wednesday –

Said goodbye to Oma.

Thursday –

Rudy went on his very first playdate ALONE with some friends from school…to see Cars 3 again!

Friday –

Spent the morning in the ER…supporting Wilson who had a little mishap with his motorcycle. Rudy was quite peeved he didn’t have control of the tv remote but it was, after all, Wilson’s gig this time around.  And, YES, Rudy wore the same shirt 4 days in a row!!!!

Ha Ha!  June is wrapping up quick around here.  We’re gearing up for the 4th of July holiday and Vacation Bible School next week at our church…living in limbo doesn’t feel so bad when there’s lots of fun to be had!  Bless you friends and thank you for your prayers!

22 thoughts on “Living in Limbo

  1. Precious, precious, precious friend!!! You are in my thoughts and prayers. What an incredible family so have and I am blessed to know you and call you friend!!! mwah! 😘

  2. Hi Triiiiiiiiiish!
    You are an amazing woman!! Even though I have NO idea about life with Rudy, I thought I might write about something I do know. GOD IS GOOD, ALL THE TIME! In my alcohol recovery program there is a line from the full serenity prayer that says “Accepting hardship as a pathway to peace”. I celebrate 4 years clean and sober on our Nation’s birthday this year after almost losing everything from this disease, including my life. The hardships will keep coming, but God wants us to have his peace. Love you GAL!!

    1. BrenDAAAAAAAAAAAA! It is so good to hear from you and I’m grateful for your comment. Indeed, God IS good all the time and I take to heart your encouragement of “accepting hardship as a pathway to peace”…so true! I also share in the celebration of your recovery journey and praise God for FOUR years clean and sober!!! I’m proud of you Brenda and am inspired & encouraged by your victories. Love you friend!

  3. The uncertainty and unpredictability of the future has got to be a challenge….you’re even more Type A than me!……I’ve come to the conclusion that although we have to be realistic about the future, today is enough, and His Mercies are new every day!!! To think of what is going on in Rudy’s body makes me cringe, and feel fearful, and your mommy’s heart must hate to go there, but you’re right; every day so far has been a miracle, and every day from here, you all will be in His hands.
    Sorry to see Wilson had a tumble….hope he’s ok!!!

    1. “Today is enough”!!!!!!!…That resonates with me this morning. Amen and AMEN! Thank you Gracie!

  4. My friend, if only I or someone, anyone could lift this thing, this limbo for you and your family. My prayer is that in the meantime, you will find as much peace and happiness you can stand! I love you and all your wonderful family! 💓 Deb Love!

  5. Oh Trish… thank you for sharing your heart ❤️ Continuing in prayer for Rudy and your whole family. I love reading your updates and seeing pictures of the family. The love and joy you all share is so evident in those photos! Blessings from all the Wilsons!

  6. Thank you for sharing my friend. I love to read all of this, and often do not know how to reply… not enough words in English to talk with the nuances I have in my mother tongue…
    this limbo must be hard… not knowing what to expect is… and don’t we all… I mean, not to know what to expect from the next day…
    but in this situation, small things make me happy: seeing that Rudy is wearing the same shirt all the time and you letting that happen. Seeing his friends and family and how Rudy connects. Reading that you do not know but still go strong!
    I was so happy to meet your family at the reunion and know you all connect. Whatever happens next, nobody can take that away!
    Thinking of you!
    Love you!

    1. Oh Koen, you eloquently communicate in English as well, my friend! Thank you for sharing this and, yes, you’re right, no one knows what tomorrow will bring…there is benefit to living in the moment for us all, isn’t there? 😉 Your words bring a smile to my face knowing they come from so far away!!! Thank you for the encouragement and love…

  7. It’s nice to hear how you guys process and explain the complexities of your situation. No doubt a very unique, joyful and heart wrenching journey you all are living. Thanks for letting us share a piece of this with you all. Lots of Love from Colorado.

    1. He’s doing great…he got scratched up a good bit when he lost control of the bike on a slick roundabout but nothing broken…he hasn’t been to work all week mostly because he can’t get a closed toe shoe on his injured foot but he’s going to try again today. ‘So grateful it wasn’t any worse!

  8. Facebook has me so conditioned…I wish there was a mechanism on WordPress to “love” comments because I do LOVE every one. The words of support and love and encouragement really do lift my spirits and help me keep my eyes fixed on Him…thank you sweet friends!!!

  9. “I don’t believe tragic things happen for a specific purpose but that I do believe purpose can be birthed from tragic circumstances” Really profound and brave.

  10. Oh Trish, you never cease to inspire me. Love you so so much and continue to hold your sweet Rudy close in prayer (and you as well). I hope maybe to cross paths with Wilson as we move Joey in to APU at the end of August. Hugs and love my friend!

  11. Wow, Trish–I’ve been learning from you for years, but now more than ever. I’m so grateful that you record your thoughts, observations and lessons learned. It’s so gracious of you to give us a peek into your life and it is so helpful for me, and for many others as well. You are a dear, dear friend and I love and admire you very much! (You have some awesome kids, too!) 😄

  12. Beautiful thoughts filled with faith and Hope. You and your family are very special. I know why God picked you! So glad to know you, keeps spreading that beautiful spirit to all you meet.
    ❤️ brownie

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