There is so much that went on this past week and I’ve been having a hard time figuring out how to report on it all…some things having to do with Rudy and his care, some things having to do with the life of our family and SO MANY things we are still processing in our minds and hearts. In some ways I feel like we’ve been darting all over the map both physically and emotionally and then it dawned on me yesterday that there is an emerging common thread of “God’s grace” evident in all that is going on and suddenly it all feels very much connected and intertwined!
I think the shock of Rudy’s cath results is starting to subside and the heaviness is settling in…Rolf and I are both having a hard time focusing during the day and daily tasks are taking twice the amount of energy and time to accomplish. Nights are the worst…the hours between 2 and 4am are especially bewitching and restless sleep is the norm these days. My week last week culminated with the need for a root canal which added to the feeling of agony and heartache (not to mention toothache!). And, yet, in the midst of the “pit in my stomach” pain and uncertainty, there is an undeniable, deep-rooted peace. It’s a curious experience…pain and peace coexisting equally in the very same moment. Our good friend Bob describes it as the “miracle of God’s presence” and I have to agree. God’s presence brings with it peace and His sovereignty brings hope and the two are powerful antidotes for fear and despair. The feelings of sadness are very real and yet the penetrating peace and hope of God are just as real and bring comfort to a mother’s (and father’s and sibling’s) tender heart…ah, God’s grace!
The miracle of God’s presence was also demonstrated about 3 weeks ago when a sweet, young family visited our church for the first time. We bonded quickly with this family and found out as we visited after the service that they lost their 4 year old daughter a year ago November. Joele’s condition was different than Rudy’s but she had similar equipment and so the connection took on even more depth. A week later we shared common stories of frustration with insurance battles and medical supply mishaps when the subject of wheelchairs came up…when we shared about our current battle to get Rudy a comfortable and appropriate wheelchair or medical stroller, Kara’s face lit up and with tears in her eyes she explained how she had been praying for direction about whom to pass on their daughter’s medical stroller and believed Rudy was the one. Long story short, I picked up the device the day before Rudy’s cath to try it out for the weekend and it couldn’t have been a more perfect fit! The minute I put Rudy in it he kicked his feet in excitement and clearly felt like a big boy sitting up high and supported in the middle of whatever’s going on. The generosity of Jeff and Kara in the wake of their own deep loss is profoundly moving to us…ah, God’s grace!
(For those of you who inquired about contributing toward Rudy’s wheelchair, we are now transferring our monies and energy toward the purchase of a modified van to accommodate Rudy’s new device. Please know your gifts will be used toward this purchase and benefit both Rudy and our family as we settle into this next phase of Rudy’s mobility!)
After the draining week we had last week, I wasn’t too excited about the full weekend we had ahead of us but “duty” soon turned to “joy” when I realized that the weekend was full of events that represented my big kids’ passions…Wilson’s first drumline performance in the GVJH marching band, Max’s football season finale and Olivia’s ability to combine creativity and fun as she prepared for Halloween. Just a few days earlier Dr. Rick encouraged us to “not worry about Rudy and love all our kids” and here we had a weekend filled with “out of the ordinary fun” that helped me grow in my love and appreciation for our kids, their interests and their heart. This weekend was a helpful reminder that the lives of our older kids are active and colorful and rich and should be freely celebrated with gratitude and love…ah, God’s grace!
Looking ahead, Rudy has two more doctor appointments this week and by the end of Friday, we will have touched base with all of his specialists and updated everyone. So far, no one wants to make any major changes in Rudy’s treatment. I spoke with Dr. Shapiro (UCLA ENT) late last week and she agrees with Dr. Pornchai that our next move should be to wean Rudy from the trach. She feels the scar tissue detected in Rudy’s airway during his bronchoscopy in July could likely prevent him from having a successful sleep test off the trach so she wants to remove that scar tissue before his sleep study. We scheduled that procedure for next Tuesday (November 9th) . Rudy will need to stay the night for observation and we’ll return home on Wednesday if there aren’t any complications. Once he heals, we’ll do the sleep study (hopefully in the next couple of months) and then start weaning him off the trach maybe at the start of the new year. Under different circumstances this would be a real exciting milestone to conquer but, I admit, my heart is heavy over it knowing the only reason we’re moving forward on this is because the Glenn isn’t happening…oh, for more of God’s grace!
Other than that, Rudy is happy, active and none-the-wiser! He thought Halloween was pretty cool but thinks Wilson’s drum set from school is even cooler…