As the summer winds down the activity level in our household is ramping up. Back-to-school shopping, garage storage reorganizing and car decorating are all indicators that Max and Olivia are ready for the new school year. Olivia headed off today for her first day of her Senior year with a giant smile on her face. Max is dutifully organizing his boxes of college gear and getting packed up for his return to Point Loma on Sunday. Wilson is busy keeping in tip-top physical condition with his daily workout regimen and ruck-marches and with Rolf at work that leaves me to hold down the fort at home. I have slowed down to a literal standstill making my fear of missing out escalate to an all-time high. Just this morning, for example, Rolf and Olivia went out to take the traditional first-day-of-school pictures and it was so hard for me to not be out in the middle of it. The family has their full days of activity, constantly coming and going (as they should and as I want them to)…I watch them come and go with a deep longing to be a part of the action. Unfortunately this is the new normal and I better figure out a way to be at peace with it before it drives me stark mad.
A few months ago I mentioned that I got a speech-generating device. One of my frustrations has been the lack of technical support I received from the company. My speech pathologist encouraged me to work with the technology before I actually needed it but the company rep with whom I was supposed to train was never available. ‘Turns out, it’s all a moot point after all because I lost use of my hands and my ability to communicate effectively at the same time. As a result I am now in the process of getting eye gaze hardware installed in the unit. It is very intuitive and easy to use and will be a game-changer for me in my ability to communicate my needs so please pray for a speedy response from insurance and all the powers-that-be. I really would love to have this resource while I can still move my eyes. So much of this process has been trying to get ahead of and prepare for an unpredictable disease which is particularly difficult when you’re also trying to conserve your energy for things that really matter. If only we had a crystal ball. Ha Ha!
Speaking of technology…we pulled out Rudy’s old iPad a couple of weeks ago to do some streaming on an old TV and were delighted to discover a video he recorded on our road trip along Route 66 the day before he passed away…Technology is amazing!
Rudy's Beat 
Awwww sweet Trish! You still amaze me – daily!
Lord make the path smooth to all areas and “powers that be” as Trish and others navigate towards the eye gaze hardware that she needs to communicate. Fill her day with Your ministering angels in whatever form You decide to bring them. Thank You Lord for the blessing of the video that You brought to their attention at Just The Right Time. You are Amazing Lord and we Praise You and Thank You for Who You are and All that You mean to us. Guide and protect their family as each one starts this new season of school, training & life in general. Draw them closer to You each and every day!
I love you! Melani
Your children are incredibly loving, beautiful, smart, kind, fun, interesting, hard working, outstanding! You and Rolf should be so proud. Love, hugs and prayers for all of you.
💕 Alice
Your children are incredibly loving, beautiful, smart, kind, fun, interesting, hard working, outstanding! You and Rolf are amazing parents, you should be so proud. Love, hugs and prayers for all of you.
💕 Alice
Your children are incredibly loving, beautiful, smart, kind, fun, interesting, hard working, outstanding! You and Rolf are amazing parents, you should be so proud. Love, hugs and prayers for all of you. 💕
Love to you, kiddo. It gets harder and there is no escaping that truth, dear one. And yet . . . your family literally breathes life and grace and hope and laughter and love into every new loss, every point of fear, every dang challenge. And Trish – YOU DID THIS. You and Rolf and the Spirit – you formed these people and you did (and continue to do) it so magnificently. Kudos, champ. Even if your eyes stop moving, you are a champion. And that is one of the truest things I know. Love you bunches. Miss you.
I sure hope you can “find away to be part of the action” you always do seem to find a way – leaving the rest of us in awe.
Even though you are not physically keeping up you got your family to the admirable place they are today – you made their action possible.
And I suspect their love, respect and admiration for you inspires them more today than ever before. Because you Trish are an amazing force of love, empowerment and kindness!
“This disease can do a lot of terrible things. But it won’t erase memories, or the thought of family’s love for you. They do these things with you in mind AS YOU TAUGHT THEM HOW . The pictures you have will never fade. The irony of ALS is that while it destroys the body, the mind remains as sharp as ever. These special moments are moments with Rudy are never to forget — this disease will not take that away from you”
~HUGS AND PRAYERS~
Dear Trish,
The eye gaze technology will indeed be a game changer and I am praying for quick processing with your trainer and insurance. As soon as we walked into cars land Monday and lightning McQueen was there waiting for us, I smiled and said thanks to Rudy. He is in our hearts each day along with you and your incredible family. So excited for Olivia’s senior year and applaud you and Rolf for your amazing job as parents. Love you!!
Oh that video is a treasure!!!!!! What a special relationship Rudy had with Wilson…. and all his sibs!!!! Praying with you that your new software will be approved soon!!!!!! I can imagine how much energy and breath this post took dear friend…. your words are precious!