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.
Rudy's Beat 
Love all the pictures. Just hate to hear the “r” word. I am having such a difficult time hearing my own son and his friends use that. I try to explain it. I remember being guilty using it myself as a teen. Unless you have known someone it is very difficult to educate the many insensitive folks in this world. I know Rudy will be very strong and the only “R” word will be RUUUUUUUUUUUUUUUUUDY! Love you all.
I can’t wait to hear Rudy sing and laugh…:)….someday!
Rudy, I am so proud of you and your family. Any one of them would go the extra mile to protect you. Those insensitive to anyone with disabilities should have to follow your Mom, Dad and sibs around for a day. Then they would, at the end of their roller coaster day, know the agony and commitment and energy that is manifested in every moment of care and concern. They would also see great faith and true love in action! Stay strong and keep the faith! I love you MORE !!!
I’ve been following your journey for some time – kind of like a stalker! All your posts always have something uplifting and the pictures always make me smile! You are a wonderful family and I pray that only the best comes to you. Keep the faith and ignore the bad.
That word infuriates me and should NEVER be used, but I must say, I, NOT FOR ONE SECOND ever thought of my buddy as slow or limited in intellectual or emotional development. (the definition of that terrible word) Rudy is SO SMART and SO ADVANCED given his heart condition! He is full of LAUGHTER AND JOY! Everytime I see his face he just melts my heart and everytime I see him he is learning new things! It is a joy to watch him, as well as the other children grow! Your family (which I know I say this often) is so amazing. Your STRENGTH and your LOVE is like none other! It is truly inspiring! You and Rolf have been a wonderful example to us as parents and as husband and wife. We love you guys!
Much love is being sent your way! I will continue to pray for your strength and comfort as you tirelessly keep your family strong in the midst of the hurdles you all must jump daily…you are a shining light in this clouded world! Each person in your precious family exudes the Joy of the Lord! Thank you!!! Much love, Melani
Special Hugs to ALL of you in the daily grind , but also the special moments, Swing, T ball, Guacamole,
And the sibs great times with Max’s songs, the great Drum competions and Soccer. Whow you are busy.
I know the insensitve remarks hurt a lot, just disregard them those people dont know what they are talking about — they dont know our beautiful sunshine Rudy.
Awwww, Trish…..there you go again making my eyes water! Love you all so very much. You are an inspiration and an encouragement!
If you EVER hear anyone say such a thing again, you have full permission to haul off and slug ’em. (Or at least give them the evil eye.) Sheesh. So very glad there are so many lovely people to counter balance the thoughtless ones! Love these pix, love to see Rudy taking development steps forwards – so cool.
Dear Trish and all the gang… we send you all Boston Strong love and encouraging hugs… I pray that your heart and mind may find soothing and comfort in those difficult moments and days as you navigate Rudy’s care and what it means for your family. We SO admire and root for you from across the continent. Andi, John, Mayali, and Kyra
Love the pictures with Buzz, past and present. I agree with all the comments above; love watching you grow and seeing life through your perspective gives me insight on how to treat people better.
Love and blessings to you all from Glendale. Jo
Oh my goodness…what a post, dear friend. I am so sorry you have to bear any additional pain caused by a very insensitive, er–clod. That person obviously doesn’t know little Rudy’s grit and determination and how incredible he is. And what a joyful little spirit he has! He is really a remarkable little man! 🙂 You know you are parenting a champion…just remind yourself of that on days like that when the “clods” open their mouths. “I have the blessing of parenting a champion.” “I have the blessing of parenting a champion.” I like that as a mantra! Do you? 🙂
Love and hugs to all of you, Geylings. You are one incredible bunch!
Thanks Trish for your transparency and honesty. Thanks for giving me such wonderful opportunities to stop reflect on my life’s blessings, and all the forms they come in, as I read about and glimpse into your life, blessings and difficulties. Thanks for the inspiration you and your family are to me and my family! Miss you all, love seeing the wonderful pictures, can’t wait to meet Rudy someday!
Trish….so well written. Explaining the unexplainable. It’s amazing the battle you guys fight underneath all the fun pictures. Your struggle and ability to communicate help me understand some of my own “unexplainables”. I know at some level…you just do what you have to do, but your faithfullness and perseverence and honesty through the process is amazing. Look forward to seeing you guys in June. Lots of Love.
Rudy, you have grown so much since I last saw you! Look at your balance and ability to feed with a spoon. But what I love most is your smile and that you are “keep’in score” for the team! Luv your LaLa
P.S. Trish Happy Mother’s Day