"Our Little Trooper"

"Our Little Trooper"
"Let me live, that I may praise you!" Psalm 119:175

Sunday, November 11, 2018

All I really need to know... I learned at Friendsgiving 2018...

This afternoon was just supposed to be a simple get-together, a "Friendsgiving 2018" hosted by Manuel Diotte & Lucinda Suarez, of Ferrari Kids. We all signed up for dishes to bring to the potluck.  There were board games to play, music in the background, and plenty of food for everyone.  It was so nice.

As the afternoon began to play out though, I realized it was so much more than a simple "get-together" though.

Manny, Lucy, current and past Ferrari kids, their families, and supporters of Ferrari kids, all came together for an afternoon of food, fun and fellowship.  We started the meal with prayer, and then Manny asked everyone to go around the room and tell a little bit about themselves.  That is when the enormity of the evening became more clear.  God's plan was revealed.

Manny quoted Robert Fulghum, from "All I really need to know I learned in kindergarten" when he mentioned one of the most inspirational quotes that affected his life:

"Hold hands, and stick together".

At first, I smiled and thought "oh yeah, that is a good one", but I did not realize how impactful it would be, until the afternoon progressed.

I will try to explain what I witnessed and encountered, and I hope you somehow feel what I felt, because it was beautiful.

Bit by bit, God revealed His presence and His plan in all of this.  His hand was in ALL of it.  

Here is a little history...

~Manny and I both spoke at a charity event nearly 10 years ago, "Friends of Anglers".  That is when we first met.  Rowan was a toddler.  Manny had more surgeries than Rowan at that time, though we joked about it not being a competition.

~Several years later, multiple people nominated Rowan for the Ferrari Kid Program, but he was almost always hospitalized or immune compromised, so he could never make it. 
~Eventually, Rowan was blessed to have Manny come make sure he got a personal ride around a parking lot in a Ferrari, one day when he wasn't quite up to a full event.

~Then, Rowan was eventually able to attend a full Ferrari Kids red carpet event, just a few months before he left for Seattle.

~Rowan then left for Seattle, where he had 2 back to back bone marrow transplants.  He spent his final 6 months hospitalized there, and passed away there on December 15th 2016.

~Manny asked Keiba Easterling and myself to be guest speakers at the 2017 Ferrari Kids Gala. We both had sons who had attended the same Ferrari Kids red carpet shopping spree, both passed away in the following year, and are now both buried at the same hill country cemetery just a few yards away from one another.

~I asked Manny to be one of the guest speakers on the panel of the Methodist Children's Hospital "Rowan's Breakfast of Champions" this past Summer, held during the Rowan Windham Memorial Cereal Drive, where over 200,000 servings of cereal were raised for kids in our community through the San Antonio Food Bank.

But see, all of that is just the history that exists between Manny and I, or Manny and Rowan, or Rowan and the Ferrari Kids, or Manny and the Cereal Drive.  Today, I realized how much bigger a net has actually been spread.

Manny asked me to start off the introductions.  As I did so, instead of passing the baton to my immediate right, my eye was drawn about 10 people down the table...to Jordan.  Jordan is one of the happiest, most joyful, most gracious souls I have ever met!  She is 17 years old.  When she was born, her parents were told she would never make it this far, by a very long shot.  They were told to take her home from the hospital, love on her, and to make the most of her time here...  However, thanks be to God, Jordan IS still here.  Her laugh, her voice, her smile, are all simply infectious!  Ironically, I met her at Methodist Children's Hospital just 2 weeks ago when I was hosting a Halloween Arts and Crafts event in memory of Rowan.  That day she called me "friend" repeatedly.  She kept saying "thank you friend", "that's so nice of you friend", "you're my new friend", etc.  Tonight when our eyes met, we both recognized each other instantly.  She called across the room, "that's my friend, we did art together!".  Jordan and I hung out quite a bit this afternoon.  She has another surgical procedure coming up this week, and I promised to send her Thanksgiving crafts to do before and after that.  She is currently running for "Queen of the 2019 Fiesta Especial Royal Court", and I would love to help her achieve that.  40% of all the money she raises will go to the charity of her choice.  She chose Ferrari Kids;) The other 60% helps offset the cost of the Fiesta Especial Celebration Day which benefits the community-based instruction program for children and adults with disabilities at the Fiesta Carnival.  If you are willing and able to make a donation towards Jordan's 2019 Fiesta Especial Royal Court Campaign, please do so.  I would be honored to help her achieve her fundraising goals, and you would be contributing to such a great cause.  (I will post details at the end of this post.)

Several people down the line, another Mom introduced herself to the group.  Her daughter Hiromi and Rowan had hand painted Toms shoes at a MCH event almost 5 years ago.  But prior to that even, Hiromi and her family had brought goodie bags (delivered by Minnie Mouse) to MCH while Rowan and one of his best friends Charlotte were hospitalized there during Valentine's Day.  Hiromi did that because she battled cancer herself, spent so much time there, and knew what it was like to be in the hospital.  Again, full circle...

I also saved several phone numbers in my phone tonight, as I met person after person, that God has brought together through Manny and the Ferrari Kids.  We weren't saving each others contact information because we liked their style though, or because we needed to return dishes after the potluck.  Instead, I exchanged numbers with people who either I was going to help with their next giving event, or we were planning a way to give back to others together, or we were both in the process of writing books to tell our son's stories, etc.  It was all so more good could be made.

We were literally holding hands and sticking together

Manny, Lucinda, Ferrari Kids, family and friends who attended tonight, and to those that could not make it...

We were brought together for a reason.  It was a pleasure seeing everyone today, and I look forward to our future gatherings.  But know this... we are all in this together.  Lets continue to "Hold hands and stick together".  And thank you for that life lesson/reminder today Manny.


The only other moment that I want to make sure to document tonight is the moment I knew Rowan was there with us.  

I really did enjoy talking to the other parents, and watching the young Ferrari Kids, but I cannot lie, it was overwhelming at times.  I saw Rowan all over that room, in so many of those children, etc.  

It was difficult to not physically share today with him.  He would have loved it!  They counted the fish in the tank, played bingo, and connect four, and bean bag toss in the hallway, etc.  Rowan would have had a ball!

At one point I was so overcome with happiness at the sights and sounds of that room.  I started video taping around the room as Manny and the kids played bingo.  All of the sudden the song changed on the iPhone that was projecting music out into the room.  It was "Hallelujah"... a song that Kainoa Kamaka played on his ukulele and sang at Rowan's funeral just less than 2 years ago.  For a moment, it was too much.  I walked outside into the rain, to catch my breath.  I knew it was a sign that Rowan was there with us, just as I was missing him there, but it was also an earthly reminder that he wasn't there.  I am human.  My heart hurt.  But at the same time, I trusted God that it was a sign of confirmation...Rowan was indeed there today.

Thank you Manny and Lucy.  Thank you Jesus.  Thank you to everyone in the Ferrari Kids Family.  Thank you to all the Ferrari Kids Friends.

Happy Friendsgiving 2018!

God Bless.

***ps... to donate to Ms. Jordan Allen's "Queen of the 2019 Fiesta Especial Royal Court":

Checks- Box 28243 San Antonio, Texas 78228 ("Jordan Allen Campaign" in memo section)

Online- tinyurl.com/Jordan4Queen2019

Paypal- fiestaespecial@disabilitysa.org

Friday, November 2, 2018

"Courage and Hope": Happy Birthday Jalene

Jalene's 8th birthday was on October 25th.  Rowan would tell us that she was still 4 in Heaven though (so her Mommy doesn't miss anything).  Rowan joined Jalene in Heaven less than 2 years after she passed.  It is one of my great sources of comfort, knowing that they are together again now...this time, neither of them is sick though, and they don't have to just play in the hospital art room, or watch each other fade.  I can only imagine the colors they are creating with their artwork now.

I was not able to make it in to San Antonio on Jalene's birthday this year, so I went to Rowan's graveside in New Braunfels instead.  I figured, they are together in Heaven, so maybe sitting at his would make me feel closer to her as well.  I journaled to Rowan, and then wrote Jalene a birthday card.  It had the most beautiful butterfly on it.  It reminded me of the handprint butterfly that I helped Rowan and Jalene make in her home, just days before she went to heaven.  

I also brought two special rocks that I had just purchased.  One said "Hope" and the other said "Courage".  If you know Jalene and Rowan's stories, then you know that The Guardians of the Children, Von Ormy Chapter adopted Jalene before she passed.  They gave her a vest with the name "Courage" on it.  They asked Rowan, way back then what his name would be if he was a Lil Guardian too and he said "If Jalene is Courage, then I want to be Hope".  The GOC made that come true for Rowan before he left for transplant.  He even wore his Lil Guardians vest, with the patch "Hope" on it during his first transplant.  It is something that Jen and I cherish, the memories of our little fighters, Courage and Hope.

I brought orange and pink roses to represent Jalene and Rowan.  We all know Rowan loved orange, but he also loved pink (wearing his pink shorty shorts every Sunday at home and in the hospital).  Jalene also woke from a sleep once, when she was home on Hospice care, waved her hand in the air and said "make it all pink".  

Once I was finally able to make it to Jalene's grave last week, I met her Mom and her little brother there.  I arrived first, so I sat there for a while talking to Jalene, reading her the card, praying over the rocks, and just listening to the breeze.  

(this laminated picture of Rowan and Jalene has been here, outside, for almost 2 years, and its still as good as new) 

(there was the sweetest little fabric butterfly stuck in the ground too:)

In the corner of my eye I kept seeing leaves fall.  It was so peaceful.  Then I noticed that there was one leaf, orange and heart shaped of course, that seemed to be hanging out mid air.  It was dancing in the wind, like a butterfly.  I thought my mind was playing tricks on me, or that I was day dreaming, but the more I stared at it, the more I realized... it was dangling, dancing, several feet from the ground, but also several feet down from the branches.  I took pictures, and then I video taped it.  It was Rowan, I knew it.  Showing me that he was there with me too.  This leaf stayed there for an hour...and Jalene's little brother and I eventually figured out that a single spider web thread was holding it suspended in air.  So yes, there was a reason it wasn't dropping to the ground like the rest, but when is the last time you saw something like that...a single leaf dangling from a spider web, dancing in the wind at your angel's angel friend's grave.  I still believe it was Rowan, showing me that he and Jalene were dancing and twirling with joy in heaven.

We spent a little time together there...remembering Jalene, Joshua playing with the rocks, Jen reading Jalene's card, and me giving Jen some flip flops I had made with one of Jalene's famous sayings: "Love everyone the same!"

Before leaving, I got some donations for the hospital out of my trunk for Jalene's birthday fundraiser that her Mom hosts each year.  Her brother jumped in the back of the trunk to check things out and he found my cemetery bag, the bag that I take with me to Rowan's grave each week.  It had my journal, a sketchbook, Lisa Krantz's newspaper story in the Express News, bubbles, etc.  He honed in on the bubble right away, and I told him to help himself.  He waved it around and around.  It was so cute.  Of course two big bubbles danced around together for a while with Josh chasing them...no coincidence:)

Jalene, Rowan...Courage, Hope... know that you are loved and missed deeply...

Rowan, this may be where I go to "sit and talk with you" for now...

and Jalene, this may be where I go to "sit and talk with you" for now...

But I know where you both truly are...

Fly high, dance in the wind, flutter your wings,
 make the most beautiful heavenly art ever...
and keep painting that sky pink and orange for us, 
along with all your other angel friends.

Happy Birthday Jalene!