When the big boys were little they played Tony Hawk’s Downhill Jam video game ALOT and every time their video game persona would crash, all they had to do was shake the remote control and the game would reset. We’d get so caught up in watching them play that when they’d crash and burn we’d yell “Shake to recover. SHAKE to RECOVER!!” at the tv screen. Naturally, that transferred over into real life so when the kids would fall down, we’d encourage them to “shake to recover” and if they weren’t hurt, they’d hop up without skipping a beat and continue to play…no tears, no fuss. I was reminded of that a couple of times this week because I still wake up in the early hours of the morning in total disbelief that Rudy is gone and I’ve caught myself physically shaking my head as if that’s somehow going to reset the events of the past 6 weeks. Then my heart breaks all over again when I come to the realization that it doesn’t work that way in real life…only in video games.
It’s September. August feels like a total blur. We’re slowly finding a rhythm to our daily routine here at home. We hear tidbits from the boys on our family text thread and they seem to be settling in too..
PU
The MOD Squad had an excursion yesterday…something we can add to the growing list of things Rudy couldn’t have done with us. First on that list was a pit stop we made in Vail on our marathon drive back to California from Kansas. We stopped in Vail to find a potty and stretch our legs and decided, spontaneously, to ride the gondola up to the top of the mountain…
Rolf, Olivia and I decided to break up the long holiday weekend yesterday with a day trip up north to San Simeon to tour Hearst Castle (a favorite stop on California’s Central Coast). We’re in the middle of a brutal heat wave here and it wasn’t lost on me that Rudy would have had a difficult time in the 100+ degree weather on top of the hill where the mansion is located. With all the transfers and steps and narrow corridors, it’s just not a place we could have ever taken him…so we made sure to enjoy it that much more and not take any of it for granted.
I’m kinda carving out a routine to my day. I’ve been getting up and doing my house chores early before it gets too hot and then before I know it, Olivia and Rolf are home and I couldn’t tell you what filled my day (you know, part of the “blur phenomena” I mentioned earlier). I know that things will become more defined as time passes but what is clear to me now is how much I miss the “Rudy routine” and the people we met along the way. Rudy definitely widened our circle of relationships…for me especially. His therapists and nurses and doctors and doctor’s office managers and special ed teachers and aides and bus drivers and pharmacists and the enteral supply reorder lady (and, yes, even the crApria delievery man) became the people I interacted with on a daily basis and although the friendships will last, I know, the daily interaction with these people is gone and that is part of the loss for me. We haven’t just lost Rudy, we’ve lost the entourage and the party that seemed to follow Rudy wherever he went.
I ended up incorporating a couple of trips to the cemetery this week as part of my new routine and both times I ended up interacting with one of the grounds keepers. On my second interaction with her, I found out her name is Gayle (or Gail?) and that she never had children. She has worked at the cemetery for a while and takes great pride in her work. The second day we talked she was tending to the hedges along the perimeter of the property and she told me “I consider the cemetery the painting and the hedges the frame…and a beautiful frame can make a painting pop!”…what a sweet and clever perspective. I thanked her for taking such good care of things and as she drove away in her little maintenance cart, I thanked Rudy for widening my circle…again. I know that there is going to be a moment or two (or twenty) in each day where I’m going to long to be able to shake and recover from a life without Rudy but it’s important to recognize that each day is also bringing new introductions and experiences that are rich and life giving and important to the life of our family as it exists now…and often, it’s the simplest that end up being the most profound. Rudy certainly taught us that.
Rudy's Beat 
You are grieving well Trish and you are teaching others to grieve too.. hugs so tight.
Lynn
Aw Trish, your circle of friendships will emerge again, when it is time, because you love everyone, everywhere! So glad you got away for a little adventure this weekend!
Love you precious ones One foot in front of the other and we all pray for you.
Love you so much!
Trish, your blogs have been beautiful narratives of joy and struggle, family and community, fear and acceptance. We all write and read so we are not alone. I lost my best friend suddenly and tragically recently and have struggled mightily. This post revealed wonders of loss that I had not considered. You healed me, at least for today.
This is Dan Madden by the way.
Oh Danny, I’m so sorry to hear about your best friend! Such a deep. cutting. loss. Grief sucks. I’m grateful you found a little encouragement in my grief story and I pray the healing continues for both of us. Blessings and hugs to you, J.J. and family!!!
In the work I do, and in personal life, I’ve found that our suffering can provide great gifts because we are better prepared to help others in the future, giving some semblance of meaning to our loss and heal us. My friend’s death has humbled in a way that will make me more of service to others with fewer words and more conscientious actions. I see that you are filled with hope and acceptance that will with time be transformative — for yourself and those who see something in you that they want for themselves.
You are precious. I love you!
Another great, and heart-stirring post. Your honesty and authenticity is truly God-filled and inspired as you describe some of what’s going on inside. Thanks for sharing.
On a side note, I was particularly impressed with Olivia’s cloning in the panoramic photo. Are you going to clone Harley as well?
HI Trish, I so enjoy your writing. It is deeply personal and yet also universal. Vulnerable without being sappy or preachy. I would love to see you collect your blog writings into a book. It would be so sweet and powerful. It would help so many parents who have gone through the trials and tribulations and victories and triumphs and losses that you have gone through. After the grief hurricane has passed, maybe you could think about that as a redemptive and healing creative act. You are awesome.
I found your blog several years ago when I was in San Diego at the Children’s Hospital with a friend of mine. Her grandson has HLHS and his surgeon moved there from Oklahoma City. (We live in Tulsa) They wanted to keep their surgeon and so we all made the trip and the long stay (4 weeks). At the time I was looking for other children with HLHS and came across your Rudy! During the years I have checked the blog to see how Rudy is doing and see your sweet family. I was shocked today when I checked the blog and found out about Rudy. I’m wiping away the tears now as I type. My heart aches for you and your family. What a fabulous and loving family Rudy had! I so enjoyed seeing the pictures of the entire family loving and helping Rudy. I wish I had something profound to say but I just wanted you to know that your little guy touched a heart in Tulsa, OK. I pray that God will grant you with the peace that can only come from Him. Mitzi
Mitzi, Thank you for introducing yourself and for your words of encouragement. What a sweet message in such a difficult time. I’m struck by what a good friend you are to uproot from your home in OK to spend 4 weeks in San Diego with your friend and her family! I pray her grandson is doing well and is enjoying an active life. There are a lot of good folk in Oklahoma as we discovered in our last morning with Rudy. We left a big part of our family heart in Oklahoma. 😉 Blessings to you and yours, Trish