June Gloom

I don’t know if it’s our typical dreary June weather or the disappointment over Rudy’s failed sleep study but the past couple of weeks have been pretty gloomy for me.  I fear we sound like a broken record but the reality is there is a daily battle to not give in to our fear and anxiety over Rudy.  Even with all the sweet and positive moments, there is a constant and nagging ache that reminds us that Rudy’s journey hurts. 

Thankfully there is always enough going on around here to distract us…

We took a day trip up the mountain to Lake Casitas late last week to enjoy the waterpark there with our Girl Scout troop of 20 girls!!!  With parents and siblings joining us our total count was 50 – it was quite a caravan!!!  Although the June gloom overcast didn’t burn off and the water was freezing, the kids had lots of fun and Rudy was comfortable with the absence of the heat…

Rudy observing the activity at the "Lazy River"
The water was so cold that Max and Livy's lips were about as blue as Rudy's! 🙂
Rudy and Wilson were content to sit back and watch the others play...

The kids spent some time cleaning out their rooms this week and, as always, unearthed fun old treasures to play with…Wilson introduced Rudy to “Heroscape” and when Rudy began to dismantle his battlefield, we diverted his attention with “Rescue Heroes”!  It’s fun to watch Rudy begin to interact with toys…

Brothers playing side by side.
Big boy fun!

It has been a long time coming but Rudy is beginning to micmic words much quicker these days…he’s figuring out a greater variety of sounds and beginning to assign meaning to his words.  I caught his latest word on video today…Happy Rudy!

Did you notice how his face lit up when he said “Daddy”?  🙂  – priceless.  That reminds me…Wilson entered a preaching contest at a teen conference he went to with the church youth group a few weeks ago.  The theme of the entries was to be “grace” and Wilson prepared a 5 minute sermonette on “Finding God’s grace in difficult circumstances”.  Essentially, he shared that the key to finding God’s grace in difficult circumstances is perspective and he used Rudy to illustrate.  He said that he could get real bummed that his baby brother has half-a-heart but instead he finds great pleasure and encouragement in Rudy’s enthusiastic greeting everytime he comes home from school…something he really looks forward to every day and how that’s evidence of God’s grace.  I agree with Wilson’s reflection…there’s nothing like a happy greeting from Rudy to help keep things in perspective!!  Happy June Everybody…God’s grace to you,

17 thoughts on “June Gloom

  1. Sweet friends, we are holding you close, and know so, so well what you are going through. Please know we are walking with you, thinking about and praying for you.
    Also, loved reading about Wilson’s sermon. We always say that children are some of the greatest representations of God and His truth with their honesty, innocence, and perspective…Wilson definitely reminded me tonight about seeing God’s grace in my life. Thanks buddy!
    We love you guys,
    Victoria

  2. Loved hearing Rudy’s words. This made me smile big time! Just the cherry on top of my already praiseworthy day. Praying for Rudy as always.

  3. My smile seeing that video is ALMOST as big as Rudy’s. I hope the “June Gloom” goes away soon. I am so touched to hear about Wilson AND Rudy speaking God’s truth. Wilson reminds us that there is grace in all situations, even the tough ones. And Rudy answered your quesiton, Trish – you asked if he was happy and he said HAPPY. Feel comforted and blessed by that…HE IS HAPPY!

  4. My sweet ones….Rudy, your new words finally include Mama and Daddy. Now what will you call your sibs? Make their day and give it a try!
    You can try Grandma Jo, too….okay?

    Be comforted..God has a plan.

  5. So impressed with Rudy’s words!!!! …yes! he loves his daddy…best clip for Father’s Day 🙂

  6. Wonderful words! and you are right the smile when saying Daddy was priceless. 🙂 No words to help with the ache except to know that many have Rudy and your family in our prayers. One thing you can know for sure is that he is “HAPPY!” 🙂

    Kathy

  7. Rudy stories, smiles and pictures always take my Gloom away! Thank you for sharing them with us.

    You and Rolf were specially chosen to be the proud parents of little Rudy. Rest assured God will take good care of all of you for following his plan.

    {{{Big hug}}}

  8. Wow! those words are SOOO precious! we love you Rudy and can’t wait to see you soon. Big un-glooming hugs to each and every one of you!
    love,
    Andi

  9. Cant wait to hear the words in person and see the beautiful smile. less than 2 weeks …. Yippie !!!!
    Happy Rudy indeed. and you could try Oma + Opa.
    Love you ALL.

  10. Oh sweet friends, thank you for the reminder of the low (and maybe not so low) levels of anxiety with which you live every single day. Your posts are always so wonderful to read and your generous sharing of all the ‘ups’ in your life can sometimes lead us to forget how truly stressful and yes, tenuous, your life with sweet Rudy is. So thank you, Trish, for that good reminder. Will be praying for peace, for freedom from obsessive worrying, for strength enough for each moment, as it comes. And the video?? PRICELESS – just so lovely to hear that voice and to see that he gets the connection between life and vocab so very well indeed. Love and prayers to each and all.

  11. Hi Trish,

    Thanks for sharing your heart with us. I will con’t to pray to the Father on your behalf.
    I have replaced the “June Gloom” label with June Canopy of Cover, okay so it doesn’t rhyme… but it an attempt to set a better tone….
    Rudy does seem very Happy, Trish, yeah! The video is sweet…

    Much love and may God’s blessed comfort be a like a canopy over you… (I had to make the canopy thing ‘work’)
    xoxo Jo Saraceno

  12. Wow! That video was adorable!!! Thank you for sharing – Rudy is such a big boy! It’s one day at a time, right? And one step at a time. Just concentrate on the little things in front of you… the big picture can feel far too daunting. We think of you all the time. LOVE LOVE LOVE!

  13. prayers to you and all …….HLHS families are very special to me; we count our blessings EVERYDAY, Nick’s Grandma

  14. Dear Trish and Rolf,

    Oh how I wish we didn’t both truly know what the “weight” is and how suffocating it can feel at times. Hoping this June gloom blows threw and brings some sunshine for all of us. Sending thoughts your way always!

  15. Hope your June Gloom goes away and you’re all happy when we get there. Otherwise we’ll have to cheer you up!(We’ll just show you dad’s head. It makes mom burst out laughing!) Can’t wait to see you! Only two weeks!
    K

  16. This one on one video of Rudy between mother and son is so very heartwarming and touching! By far, it is one of my favorite videos of Rudy. His interaction with you is so pure, sincere, warm and HAPPY! It also shows his high level of intelligence. Rudy is often overshadowed by the rest of the family so this solo video between him and mommy is absolutely priceless!! He talks so articulately for all he’s been through with his illness for his age. I couldn’t stop watching this video over and over for some reason. Please have another one like this soon! Thank you. I pray for Rudy and your family every day so that you may know more about his future medical prognosis and that you get out from the “limbo” you are currently experiencing while it is all on hold now……

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