When Rolf and I dropped Max off at Point Loma last month, we were happy to be a part of the two-day new student orientation festivities but, I admit, it was hard to embrace all the parent seminars and “meet ‘n greets” as we were still pretty raw in the wake of Rudy’s passing. Ironically, we weren’t that emotional about dropping our big boy off at college…we were just so excited for Max. He was so ready to be there and he jumped into the college scene enthusiastically with both feet. It was really fun to watch. So, it made for some awkward interactions with folks when waves of grief hit us at the most random times…like over a plate of pulled pork! We got sympathetic looks from other parents and Rolf and I just wanted to jump onto the table and yell “we’re not crying because we’re dropping off our son at college!! There’s a bigger story here!!”. It was weird. We had this strong compulsion to fill in the blanks because we felt a little disingenuous as well as misunderstood. We had this need for complete strangers to know the whole truth.
We find ourselves in a similar situation this month. Life is getting more complicated for our family and as we sit dumbfounded and in shock, we feel the need to say “Our grief is not just about Rudy. There’s a bigger story here!”.
I was diagnosed with ALS a week ago today. I have been feeling “off” for several months but it wasn’t until Rudy passed away that my symptoms came into focus. Without the added stability of pushing Rudy’s wheelchair, I noticed a more pronounced limp in my left leg. And because I no longer needed to use elevators and ramps, I attempted to climb stairs and found I couldn’t do so without pulling myself up with the hand rail. There is no pain, just weakness in my limbs and subtle changes in my speech. I saw the neurologist (who was Rudy’s neurologist too!) a week after Rudy’s funeral and submitted to a series of tests that culminated in a MRI a week ago last Thursday that did not show a pinched nerve or obstruction of any kind. Dr. C is 95% sure it’s ALS but, of course, is recommending we seek a second opinion and we are doing so at UCLA pending insurance approval.
Rolf and I have decided to share our situation publicly before confirmation of the diagnosis for two reasons. First, my symptoms are becoming more pronounced and people are beginning to ask what’s wrong. Second, we would rather have our friends and family praying from the get go. We are starting this next phase of our journey already worn down and fragile, the weight is crushing and if we’re going to do this “well”, we need our community. How that will look, I’m not sure yet but if Rudy taught us anything, it was to live life one day at a time and we will figure this out as it unfolds. What we are asking from our loved ones at this point is for prayer…prayer for mercy, prayer for wisdom, prayer for healing (emotional/physical), you name it, we need it. Once we have our second opinion, we hope to have a better sense of where we are and what our practical needs will be.
My greatest concern right now is for Rolf and the kids. Rolf and I told the kids on Monday. The MOHD squad headed south on Tuesday, picked up Wilson in LA and joined Max in San Diego for the day. It was a hard day but it was good to be together. We had a candid conversation that ended with Max initiating prayer and I walked away so grateful for my family’s strength of spirit and faith. That being said, we are all being forced to carry an intense burden ON TOP of our grief and I want to insulate my family from it all with every fiber of my being…but I can’t. Once again, we find ourselves in a hard space to comprehend that is totally out of our control…and we miss our little boy.
Dr. C encouraged us to go home and “go about our business”. I intend to do just that. I have decided to not do any research on the disease or on local resources or do any specific planning for the future until the 2nd opinion. I feel strongly that I am to take this time to focus on heart and family. Rolf, Olivia and I will begin specific counseling later this week. I have already begun taking the one drug that is available to me right now. I appreciate the loving advise from family and friends who have personal or professional experience with this disease but ask that you hold off sharing it with us until after the 2nd opinion. I’m feeling the need to pace myself and not jump into an ocean of confusing information until it’s confirmed this is the path we’re on. For now what we need more than anything is your prayer and emotional support.
(No real comfortable segue into these pictures but I love my family’s ability to embrace moments of joy in the midst of hard life stuff…)
We will update as soon as we have new information. Thank you dear ones!
Waiting in hope, Trish
P.S. I have a Bible app on my phone that gives me a random verse a day…I was struck by the appropriateness of last week’s line-up. Given the fact I can barely focus on anything, let alone reading, I appreciate God meeting me where I’m at…