The month of January is tough.  January has always made me a little blue with post-holiday let down and all but Rudy’s care is starting to add a whole other level of discouragement for me this time of year.  Always trying to keep things in proper perspective, I realize we’re still adjusting to our “new normal” and haven’t quite got our rhythm down yet for what I would describe as “annual cycles” but it’s clear I need to pay particular attention to preparing and budgeting for January.  I want to be careful in this post to NOT “poor talk” and give a false impression of our financial situation because it’s not really about money as much as it is about the frustrating process of constantly readjusting and tweaking life from our budget to our schedule to our expectations, etc…in an attempt to settle into a new and somewhat predictable normal.   Now that we have walked this road of HLHS for a few years I’m realizing that, emotionally, I start a new calendar year with both great expectation and anxiety as we begin to map out the year in regards to upcoming procedures for Rudy, goals we have for him and doctor appts we need to get on the calendar.  January ends up being jam packed with phone calls, appointment scheduling, making sure doctor orders and prescriptions are updated and deductibles are met!  I mentioned in a recent post that stacking appointments in one month is actually preferred because then we can enjoy a longer break between doctor office sweeps but it’s also emotionally draining for me and the added punch to the wallet when caught off guard can bring me to tears as it did at Costco last weekend when one of our many prescriptions that normally costs us $50 a month rang up for $165.00 this month because of our deductible.

It’s such a small annoyance in the larger scheme of things and yet it’s the little annoyances that seem to create the “loudest noise” in my life.  I find it so strange that I can stand tall and strong when hit by a boulder in life but then turn around and buckle under the pressure of a little thorn in the flesh!  I was thinking long and hard about this the other day and had to chuckle when I realized Rudy is much like this too.  Here’s a kid who has tolerated multiple surgeries and seriously painful interventions in his treatment but goes absolutely ballistic anytime his blood pressure is taken…who can sit next to a rock band without batting any eye but will get so worked up by the applause that follows he can go into respiratory distress!  It doesn’t make sense.  I thought he might grow out of his sensitivity to applause but that hasn’t happened yet so in the meantime I’ve found that if I can anticipate the applause then I can distract Rudy and keep him from melting down by holding him close and whispering directly into his ear.  I’ll say things like “Mommy loves you”…”You are such a big boy”…”It’s fun to be with you”…and soon the applause is over and Rudy is tear free!  🙂

The distressing noise in Rudy’s life is literal…the distressing noise in my life is a combination of calls to Apria, our insurance company and unexpected expenses to name a few and all of these things seem to happen in abundance (note to self) in January!  One obvious solution to all this is recognizing the trend and plan accordingly for next year but I’m also compelled to learn from Rudy’s example…just as I want so badly to distract Rudy from the noises that cause him distress, God wants to speak above the noise in my life too.  In my brokenness,or “disability”, God desires to pull me close when the distressing noise erupts in my life and whisper His words of encouragement and reassurance.  It sounds corny but it’s a helpful image for me and has prompted me to stop in the middle of it all this month and ask, “What does God want me to hear?”.  What bit of wisdom from His word is rising above all the details that drain and discourage me?

I heard Amy Grant perform a song at a women’s conference this past fall that touched me deeply.  Just as I was starting to process and articulate some of the feelings I just described, this song came along and expressed so simply and sweetly God’s place in it all.  Amy Grant hasn’t published or recorded it yet (although there are a couple of live performances of it posted on YouTube) so I hope this is okay but my friend Darlene and I shared the song at a Christmas tea last month and it was recorded so I’m sharing it below.  My performance of the song doesn’t do it justice but the message is clear…

“Be still and know that I am God.”   That has been my mantra for several months now…a good word to hold onto!  🙂

Speaking of calendars and details…Rudy saw Dr. Harake on Monday and his heart cath is scheduled for March 21st down at UCLA.  He and Dr. Dan will coil a bunch of collaterals and open up his aorta some more…most likely with a stent but Dr. Harake may choose to do another angioplasty.  The one drawback to a stent is that it doesn’t grow so the stent will need to be replaced as Rudy grows.  We’re okay with it either way…whatever is best for Rudy at the time of the heart cath!  Dr. Harake’s marching orders to us as we left his office was to keep Rudy healthy between now and then!  Kind of a tall order this time of year but we’ll do our best…please pray with us that Rudy will be a healthy boy this winter and nothing will happen to postpone the heart cath.  Thank you dear ones!

Ever Grateful…

[Lyrics to Amy Grant’s “Be Still”]

You made me, You know me, You’re able to show me who I am and what You made me for.

So I’ll turn off the tv, my cell phone and all the screens and other things that fill my world with noise.

‘Cause I know there is more to living life than what I see and You know in the quiet I might find you and believe…

You say, “Be still and know that I am God.   Be still, be still and know

Be still and know that I am God.  Be still, be still, be still.”

You made me, You know me, You’re able to show me who I am and what You made me for.

I’m not used to listening, I’m curious…wondering…can I really hear Your voice?

‘Cause I know…

12 thoughts on “Noise!

  1. I keep trying to think of something clever to say but all I got is …We love you guys and Go Rudy Go!!! xoxoxoxo

  2. Prayers for all of you as you walk this path God has chosen for you. At Bible Study yesterday i heard that when God gives us burdens, troubles, hard times, He is there in an extra strong way for us IF we but quiet ourselves long enough to allow ourselves to feel his care for us. I pray that you FEEL His care for you!

  3. Thank you so much for your wise words. I have been struggling myself lately, and this really spoke to me. My husband of 22+ years died five months ago after a painful and lengthy illness. For th most part I think I am doing ok, but there are moments and days where I wonder. One thing you said that really hit home was, “I find it so strange that I can stand tall and strong when hit by a boulder in life but then turn around and buckle under the pressure of a little thorn in the flesh!” That is so very true with me too! I made it through years of my husband’s illness, his death, and the first few months of grieving, I can surely make it the rest of the way. But I have had a series things breaking at my house that have about sent me over the edge! In the past five months I have had to fix or replace my washer and dryer, the bathroom exhaust fan, my car, the doorbell, and the toilet. And all with no husband to do the repairs or even to consult with about the best solutions. Well, this week, the basement sewer ejector pump went out rendering the basement bathroom unusable. I was at my wit’s end at this point. That pump was definitely a thorn in my flesh. I bit the bullet and called a plumber. It will be a big hit to my pocketbook, but this too shall pass. If I made it through everything else — the boulders of life — I can make it through this. Thanks for reminding me of that fact.

    Rudy continues to be in my prayers regularly. May God bless you as you travel this long journey with him. I love the mental picture of you whispering in Rudy’s ear and I do believe God does the same for us. I just need to remember to listen for those whispers….

  4. Trish and Rolf, your words are an inspiration to me. We all could benefit from “being still” and listening and you guys are amazing. I wish you peace and continued strength as you guide Rudy along this journey and navigate the Apria world….and I look forward to catching up with you in person when you come down to UCLA in March. Much love and many hugs always,

  5. It’s beautiful! Praying for you and that little Rudy will stay healthy this winter season. (By the way, I love your dress!)<3

  6. Trish, your song was a comfort to me this morning….He is God and His ways are gentle and loving in this noisy, unsettling world!

  7. Thank you again for sharing and trusting us with your heart. “Be still and know that I am God” is posted in my apt as one of my reminders that God is with me and in control. May you receive heavenly salve for the thorn in the flesh wounds! May your whole house hold remain healthy, too. xoxo Jo

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