I have come to the conclusion that the “Boogie Man” is real because in the past 3 1/2 months, we’ve confronted one nightmare after another that are still so difficult to believe…i.e, the potential scenario that made the hairs on the back of my neck stand up in caring for Rudy over the years is what unfolded on the morning of July 25th. When I googled my symptoms for the first time and ALS popped up as a possible match, I physically shivered at the thought but, of course, dismissed it as a crazy internet diagnosis. “I can’t possibly have ALS!!”. Well, today was my 2nd opinion appointment at UCLA and the ALS diagnosis was confirmed.
To be honest, I’m ending the day less devastated by the confirmation of the disease and more disheartened by our day as a whole. I knew my expectations were too high going into today and tried hard to readjust those expectations in the days leading up to today’s appointment but I really wasn’t prepared for how today played out. I have two responses…the practical and emotional.
Practically speaking, Rolf and I walked away from today with our second opinion and a clear feeling that UCLA doesn’t have much more to offer us than what is available to us locally and that is super helpful information AND important to remember.
Emotionally, however, I’m left feeling defeated and duped. We had the expectation that today would include a clinic visit with assessments from the clinic MD, physical therapist, respiratory therapist, nutritionist, etc. We were instructed to have Dr. C’s medical notes faxed to the clinic for the MD to review. We were told the authorization needed to have the clinic director’s information specifically so there wouldn’t be a delay in getting the appt scheduled or restrictions in care…a request that required a couple more phone calls to the insurance company. Bottom line, we worked hard the past 6 weeks addressing the checklist of “to dos” that ended up not having ANY impact on today at all. Our appointment lasted less than an hour. Although I have no problem with the doctor we did see, it wasn’t the clinic director which makes me question why we had to go to the trouble of getting a second authorization with her name on it. The medical notes faxed from Dr. C’s office, could not be located and, therefore, were not reviewed by the clinic MD. Confirmation of the diagnosis was determined by my answers to a questionnaire and a quick reflex & physical strength examination. I don’t doubt that is all the information the doctor needed to make his determination but I feel like we wasted our time coordinating the transfer of records that weren’t used. I thought we’d have more detailed information and the beginnings of a game plan as a result of today. Instead, I feel like we’re ending the day exactly where we started it and I can’t tell you how deeply disappointing that is for me.
To add insult to an already bruised spirit, I fell as I left the clinic. (Ironic as we had just had a discussion with the doctor about the big threat and potential negative impact of me falling!) It was an epic fall with bags flying and nothing to break the fall. Rolf had already left to get the car and there I was on all fours with tears streaming down my face in the middle of a large hallway unable to get up. Luckily, a maintenance employee heard the commotion, came out of a break room to inspect and hoisted me to my feet. Needless to say, I’m pretty sore tonight and less confident on my feet in general. 😦
Before we left campus, Rolf and I made our way to the main hospital to donate a box full of toys to Child Life in Rudy’s memory. It was difficult to be there without the boy so embedded in our UCLA memories. It felt like a foreign place…the familiarity of UCLA that we felt would be our comfort in this next medical journey just wasn’t there anymore…making it all feel even more isolating and unknown & our boy further away.
So, what’s next? I’m really not sure. There are no specific follow up appts planned at UCLA for now. We’re in the middle of open enrollment trying to figure out the best insurance plan configuration to meet our current needs. Dr. C and the doctor we talked to today didn’t have any knowledge of or information on the stem cell clinical trial at UCIrvine so we are left to figure it out on our own. And we will, all of it, one day at a time but not until next week because the MOHD squad has a SBRM graduation and Nashville wedding to go to this weekend!!!
I wish I could say some profound spiritual truth anchored me today in the midst of my frustration and disappointment but what did come to mind was the Veggie Tales theme song from the “God is Bigger than the Boogie Man” video my big kids watched a thousand times when they were little!
God is bigger than the Boogie Man, He’s bigger than Godzilla or the monsters on t.v. Oh, God is bigger than the Boogie Man and He’s watching out for you and me.
Silly, I know, but it’s true. God is bigger than our present circumstances and today’s lack of helpful information and options means there’s lots of room for God to work in His limitless power, mercy and love. Thank you, dear ones, for the abundance of texts, emails, and prayers upon prayers throughout today!!! Each one a reminder that we aren’t alone in this. God is bigger and our circle is wider than we could ever imagine and we are deeply blessed by the love. Thank you!
Rudy’s headstone was placed this week…another detail adding to our mixed bag of emotions. The final detail in laying our boy to rest is done. We’re pleased with how it turned out and hope it inspires some fun for those who visit him. A fitting tribute for our boy for sure…