Joe's ChronicALS

I want to revisit silence for a tiny bit.  And add in stillness.

There is a fantastic song by Rush called “Time Stand Still“, which my friend Rich recently brought to my attention in a wonderful Facebook post earlier this month.  In the song, the person doesn’t want to go back in time, they aren’t looking back.  They want to look around now, see more of the people and places that surround them now, to paraphrase their lyrics.  The premise of the song is “this moment”, staying in it, being present in it.  (Again, I’ll talk about Rush in another post – it’s worth it.) Continue reading “Time Stand Still (Silence pt. deux)” →

Taking you All Saints parishoners back to the days of Fr. Hoppough, Fr. Flood, and Fr. Vito (“deeyah”).  Fr Hoppough has this way of saying “ar” like “ah”.  This comes up every time the Gospel is the reading where Martha and Mary are attending to Jesus in Bethany.

My sister shared a story with me today that moved me, and I wanted to pass it along to you all.  She was having a discussion with her daughter on the way home from a medical appointment and the subject of Lazarus and death came up.

Jesus heard that his very good friend Lazarus was sick, but lollygags 3 days before going to Bethany(!), if you remember the Gospel passage.   My sister, in a moment of extreme insightfulness, had the reflection that when we are pestering the Lord for something and it doesn’t seem like He’s answering, He just might have something better in store, like resurrection instead of healing.

Here I want to quote, because I love voices:

“The girls have been watching a lot of Mary Tyler Moore, so I said, ‘Imagine what Martha said to Jesus, but in Rhoda Morgenstern’s voice. “If you had been here, he wouldn’t have died!!!!!” (It’s actually kind of fun to yell at Jesus in Rhoda’s voice.) I said, imagine you had a brother who was sick… and Jesus showed up just a little too late, what would you say . . . oh . . . duh . . . and your brother’s birthday was on the feast of St. Martha. . . .'”

God works in mysterious ways.  Thanks to my sister, we now have another patron to pray to, who is good about nagging Jesus to get things done!

And remember, He might have something better in store.

PS – I Love conversations like this.  Sitting around and talking about football bores me.  And when I got this email today I was just floored.

(Edit for clarification: The All Saints Running with the saints 5k is a school fundraiser, with an additional option to support Michael. )

Heroes come in many different shapes and sizes.  My wife Melanie is my biggest hero, as I mentioned before.  Other heroes are all around us, doing big things or small things, even ones that we look up to as the best of their craft or sport, etc.  And while I admire many of these people, today I want to shine a light on another hidden, huge hero of mine.

When you look at heroes, you usually “look up” to them. But I get to “look down” at this hero of mine!  You see, he’s 9.

Michael and I first met when I was coaching U6 soccer.  He and his little brother were on my team along with my daughter.  Michael was fairly quiet but always attentive and man, was he enthusiastic on the soccer pitch.  I always knew that he’d be back first on defense, and pushing forward on offense!  I was only able to coach the one season, however, and I didn’t see Michael much after.  We went to school with some of his amazing family growing up, so we kept in touch and the families often would talk, but who wants to hang out with a coach when you aren’t playing soccer?

Then we got the news in early 2017 that Michael has cancer – T-cell leukemia.  At the minimum, an intensive treatment.  For most and for Michael, and intensive 3 year treatment consisting of meds, spinal punctures, port access and maintenance, chemotherapy drugs, and then all the side effects that come with them; infections, sensitivity to germs, pain, loss of appetite, and isolation from friends as your daily companions become nurses and doctors and not family and friends.  Cancer is TERRIBLE, not just on the patient but on the family!  And the treatments are worse!!

At the same time as Michael was going through some of the worse (more bad) treatments early on was when I was getting my ALS diagnosis (this is April/May 2017) and soon after  we received word that Michael was praying for us, and offering his sufferings up for me! Holy cow!!!  Here’s a kid, at the time 8 years old, being more selfless and loving than any 8 year old I’d ever met!

But that is Michael.  Every time I see him, he is joyful.  He brings his joy to the clinic.  He brings his joy to home, to school, to hospital, and shares it with those around him.  He brings advent calendars to nurses and doctors at the hospital.  He unifies an entire community of school and church, filled with #Michaelstrong t-shirts and magnets.  He reminds us every day to pray, to hope, to not worry, to have faith in God’s good plan for all of us.  Even when he has a terrible infection that has hospitalized him for a week or more, the pain doesn’t overcome this young man’s soul.  God be praised.

Michael also goes above and beyond in other unexpected ways.  Just yesterday we got a note from his mom that he had made something for me and wanted me to come over and see him.  It is the sweetest note and most generous gift, earned by his 9 year old labors, that I think I’ve ever been given.  It came out of nowhere, as well.  That’s the kind of man Michael is.  (Let’s put this into bigger context- how many 9 year olds hang with 35 year olds?  Exactly.   He’s amazing.)  I know, selfishly, that Michael’s prayers are helping me every day with slowing the progression, keeping me positive and motivated to beat ALS, helping me rely on God more, and even the day-to-day things I know his prayers are helping.  The prayers of a child are more powerful than we know.

And there is the crux of it all – Jesus said, “Let the little children come to me”.  Michael may be young in age, but he is old in wisdom and love.  He is my hero in more ways that I can count – his pain is immeasurably worse than mine, yet he smiles more.  His day to day difficulty is overwhelming, yet he thinks of others.  Michael is not just a child close to God, he brings others closer as well.  I could share more and more stories of how he interacts with our parish priests, our schools, our fundraisers, our bishop, our friends, his own family… but I think you need to meet him and hear from these people yourselves.

In my own journey I bring Michael with me, to remind me to pray for him, and to spread the word of this brave young man to whomever I can.

Michael will be supported by the All Saints Running with the Saints 5K this year.  The whole school, and families, and outsiders, are invited to come and support this fundraiser and support Michael!  Registration. And if you come, you will see a small young man smiling with his friends, and the rest of us being uplifted by his prayers and presence.  

 

We are truly blessed to have this hero among us, and we need to remember him too!  It’s hard for heroes to hero all the time!

 

I leave you with a parting thought.  I am good at capturing thoughts on topics but very bad at capturing my own emotions into words.  But in good times, in bad times, I have felt the presence of the child I used to coach and now I feel often coaches me.  I have learned more from him than I could have ever taught.  And I will continue to share #Michaelstrong wherever I can!