It’s becoming increasingly clear that Rudy’s care is like a coin with two distinctly different sides. On one side, there are the medical concerns which involve coordinating his regular schedule of doctor visits and blood draws, keeping up with all his daily medications, making sure prescriptions are current, tracking down the proper medical supplies & managing his medical care at home and school in general. The other side involves Rudy’s developmental needs and the support he gets from his therapy unit, the school district and, of course, home. We are so entrenched in managing both sides of the coin that we really can’t see one apart from the other but there are seasons when our attention is focused more on one than the other.
In the very beginning, of course, our attention was on Rudy’s medical needs…our resources, every step, every breath we breathed was focused on Rudy’s survival and recovery. When we brought him home, the line between medical and developmental was grey and our attention was equally divided between the two. Now, with Rudy’s medical status in limbo and specific plans for any future treatment on the back burner, our attention in recent months has been focused more on his developmental care…with more intentional effort…and it shows. There is so much to be thankful for like major progress in mobility and big hurdles being overcome in oral feeds!!! Rudy is growing in his ability to express himself verbally and finds great delight in singing a variety of happy songs. We’re also extremely grateful for the partnership and support that Rudy’s therapists and teachers provide as they work hard to help Rudy reach these milestones too. I should be jumping for joy but the coordination of Rudy’s developmental care challenges me for many reasons and all it takes is one negative interaction or insensitive comment from an idiot (i.e. Rudy and his bus mate recently being referred to as “retards”…by an ADULT who should have known better) to make me feel defeated. I know in my mind I shouldn’t let it all get to me but my heart is hard to capture in those moments and I feel I better get a handle on it quick before the day comes when I’m not the only one who feels defeated…the day when Rudy won’t be so blissfully unaware and will have to learn how to confidently navigate his medical and developmental limitations in an insensitive and, as we saw in Boston last week, a sometimes DOWNRIGHT cruel world.
What unfolded in Boston, however, is a deeply felt reminder to me..that for every terrible act by the individuals involved that was meant to kill and destroy, there were countless acts of heroism and extravagant kindness extended by strangers to those in need. (Talk about two very different sides of a tragic coin!!!!) We’ve certainly experienced this over the years…countless blessings for every heartache! Ironically, in these past few months that have been particularly discouraging for me, there have been quite a few practical expressions of kindness extended to Rudy…extravagant kindnesses like the gift of Rudy’s O2 concentrator by Inogen and anonymous benefactors, creative kindnesses like Rudy’s Wish Trip Scrapbook from “Crops of Luv” and his Heart Hero Cape from “Powercapes.com” and a special delivery on its way to Rudy from “Spencer Family Frogs/Facebook” meant to encourage Rudy and remind us all to “Fully Rely On God”…so cute! Each one an example of strangers reaching out to other strangers in love with gifts of friendship and encouragement…thoughtfulness I don’t take for granted. I’m so thankful for you…our dear friends/family with dear hearts that drown out the thoughtless few who don’t understand or choose not to live by the Golden Rule. We are so blessed!
Here are a few family highlights from the past couple of weeks…
A little trip down memory lane…just for fun…:)
Rudy has a cardiology appt. tomorrow…’not expecting much change but will give a heart update after tomorrow’s appointment.