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…

 

 

Our girl turned 15 years old last week.  I remember the day she was born vividly.  I remember how thrilled we were to have a girl…and we weren’t the only ones!  When we got settled in the labor and delivery room at UCLA on September 9, 2002, an adorable nurse came bouncing in and said with a clap of her hands “So, what are we having today?” to which I replied “We don’t know, we like to be surprised and we have two boys at home who can’t wait to find out too.”…”WAIT!  You already have two boys and you don’t know what this baby is??”…the anticipation in the whole room heightened at that point.  Rolf took a picture of me holding Olivia just moments after she was born and that same nurse was captured in the background of the snapshot with a big smile and tears streaming down her face.  Ha Ha!  It was hard for even the nurse to NOT get caught up in our joy over Olivia’s arrival.  🙂  I knew that day that Olivia would be a special addition to our family…but I certainly could not have imagined the many ways her “specialness” would be demonstrated in her young life so far.  The courage, poise and transparency she displayed at Rudy’s funeral standing alone at the podium sharing stories about her little brother was a perfect snapshot of how Olivia navigated life with Rudy too.  Her young spirit continues to be tested and she continues to emerge with a beauty and strength of faith that inspires and amazes us.  I am so grateful for our girl.

Rolf, Olivia and I had our first counseling session and I’m grateful for the opportunity we’re having to do it together.  I’m sure as our journey through grief continues, there may be times we seek individual counseling but, for now, it feels right to be together.  I think it’s good for Olivia to watch Rolf and I process our grief openly and I think it’s good for Rolf and I to not only hear where her heart is at but to hear what’s being spoken into her life as well (not in a smothering, controlling way but as quiet observers with a big picture perspective).  A significant observation pointed out to Olivia by the counselor in our first session was that Rudy taught her her capacity to love (and, as a side note, how important that will be as the boys start to come around).  The side note was shared with a smile but it did get me thinking.  It’s true.  I do believe Rudy revealed to all of us our capacity to love and I pray this has a lasting impact on the big sibs for sure. They have learned through their experience with Rudy to love unselfishly and deeply (and also what a valuable gift that is to give) and this will serve them well as they mature in their understanding of love, maybe meet the loves of their lives and, God willing, have children of their own someday.

But I also believe that part of understanding our capacity to love is recognizing that we are, at the same time, lovable.  Being people of faith and trusting in the unconditional love of God, Rolf and I purposed to teach our kids from day one that they are loved by God for no other reason than simply who they were created to be.  From the very moment they were conceived and came into being, (before they could do anything to deserve it) they were loved by God and, therefore, are lovable.  As parents, we try to demonstrate that kind of love to our kids but we’re human and we do it clumsily.  Rudy, however, was great at it and I would often say to the big sibs “How does it feel to be so completely adored?”.  As Rolf shared at the funeral, Rudy didn’t love with his mind as much as he loved with his heart and his soul and he had special ways of communicating his love that were more often than not directed toward his big sibs.  Rudy adored his three siblings because of who they were at their core…”core to core love” is the only kind of love Rudy knew how to express and in doing so, we all learned how deeply we could love another.

Of course, with a deep capacity to love comes a deep capacity to hurt which is where we are now.  There are lessons to be learned in the pain of grief but it’s hard to see them now…those lessons will come into focus someday down the line.  For now, though, my prayer is that we all recognize that as we confront the pain we’re carving out an even greater capacity to love and, I pray, we find comfort in the fact that core to core love doesn’t end no matter the distance.

Warning:  I know post mortem photographs are uncomfortable for a lot of people so I’ll post the following picture far below so you need to scroll down if you want to see it.  I know it’s sensitive and and I know it’s sacred which is why I’m sharing it.  Sometimes, to avoid discomfort is to miss a beautiful moment…in this case, a picture of what one’s deep capacity to love looks like.  This picture was taken in the SB mortuary…it was the first time the big sibs saw Rudy after he was taken away from the ER in Oklahoma the morning he died.  It was a difficult outing…I don’t think any of them wanted to be there particularly but Rolf and I felt it was important they see Rudy once before his viewing a couple of days later.   It was hard but they did it…they pushed through their fear and their discomfort and took full advantage of the opportunity.  Olivia made Rudy a friendship bracelet and when I asked her if she wanted to give it to the mortician to put on him, she said she wanted to do it herself.  So, with Wilson’s help gently lifting Rudy’s arm so she could easily wrap it around Rudy’s wrist and with Max watching close behind, all three partnered in one last expression of love toward Rudy.  It was magnificent.  A moment I’ll never forget.

Please keep praying for us friends.  It sounds so selfish (and so needy) but we need God’s restorative power now more than ever…Rolf and I, especially, continue to battle lack of sleep, numbness, inability to focus.  All to be expected, I know, but nonetheless challenging to navigate.  Thank you!!!

 

 

 

 

 

 

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.