"Our Little Trooper"

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

Monday, April 24, 2017

"My God-Wink-Walk-A-Bout" today...alone, but not alone

It was a gorgeous day to be outside, so I decided to go on an adventure...by myself, for 12 hours. I ended up not really feeling alone at all though, as you will see...  

First, I left New Braunfels, went to San Antonio to run a few quick errands, then drove to Kerrville, to the Empty Cross.  I sat down to read a special book, that was gifted to me by one of Rowan's nurses from Seattle, who happened to have been a nurse of his here in Texas prior to that.  She has known us for several years, and is more than one of Rowan's caregivers...she is the sweetest, most precious friend to me as well.

Chapter One talked about how God gives us personal messages, or little winks, to let us know that he is there paying attention to us, or to show us that our loved ones are near.

(Yes my bookmark is a picture of Rowan:)

Right after I read chapter one, I walked around the grounds, and the first rock I noticed in the prayer garden was the one in the middle that said "Hope".  I looked up to the left and saw the rock that was heart shaped too.  Both of those are very personal to me...Rowan's GOC name is "Hope" and he saw hearts in everything (even scars and wounds).

I continued my drive, and went on to Fredericksburg, Texas, to Enchanted Rock State Park.  As most of you know, that was Rowan's favorite place, and where he felt closest to God.  It is where we climbed and blew bubbles for his Celebration of Life. 

Before I could even open my car door to get out of the car, an orange ladybug landed on my finger!  Orange!  Again, a sign from Rowan, and a wink from God.

I climbed up the rocks and then sat down on the beautiful granite to read Chapter Two of the book: "Winks of Hope & Reassurance".

It is such a special book, and reminds me of Rowan so very much.  He always, always looked for signs.  And always shared them with me, and with his angel friends' Mommies.  I don't think a week of his life ever went by that he didn't point, smile, look up to the sky, or down on the ground, shout "look, Mom", or wake up from a dream having seen signs.  Often it was daily! They were everywhere for him.  Most of the posts in this blog, as a matter of fact, are about his ability to see the signs that God showed him.  So this book is perfect for me!

I climbed a bit more, and of course...more Rowan signs...more God winks.  My walk was filled with orange and with hearts.  Rowan would have it no other way!

I stopped at a restaurant after I left Enchanted Rock, and I read some more.  It was like Rowan was talking to me, himself...

He used to tell me all the time, "Anyone can see the signs, they just have to take the time to look for them."  or  "God gives us all signs, Mommy.  I just choose to see them."

Thank you for this book Angel. 
Thank you for the signs Rowan. 
Thank you for the winks God.

I am a bit sunburned (oops), but I spent my entire day away from the house, at some of the most beautiful places in Texas...alone, but not alone...reading, and looking for and seeing the signs.

It was a "God-Wink-Walk-A-Bout".

I highly suggest the book, the itinerary, and keeping your eyes open for your own God winks.

Sunday, April 23, 2017

"A strong boy" and "a strong girl" ...from 'hosipal' friends to angels

A few short weeks ago I mentioned that one of Rowan's transplant friends from Seattle passed away as well.  They were next door neighbors during Rowan's first transplant (and her first and only transplant).  They drew each other pictures, which they would pass from room to room via the nurses, or tape to the outside of each other's sliding glass doors when they were in isolation.  They waved as they passed each other's rooms on their walks, and walked just one or two laps together near the end of her admission.  That is all it takes to form a bond between children like this though...children who have spent their lives in and out of hospitals..children who are going through chemo, transplant, etc., who aren't allowed to hang out together in each others room, or go to school, or play together, or even touch.  They never shook hands, they never high-fived, they never hugged...they couldn't, they weren't allowed, they were too immuno-compromised.  But they were friends. "Hosipal friends" as Rowan grew up calling them.  If you haven't experienced this yourself, it is hard to explain, just how a child can come to care so much about another child that they can't ever get close enough to physically touch.  But Rowan and this little girl did become friends.  They did care about each other.  And now they are both angels in heaven together.

Her Mom was her donor, just as I was Rowan's first donor. Her Mom and I became friends too.  We, could at least talk to each other out in the hall, share the elevator down to Starbuck's, share our stories, offer each other support and prayers, etc.  We were lucky that way.  We weren't the sick ones.  Our children were.

This little girl's transplant went much better than Rowan's at first, and she was discharged pretty quickly. Rowan was so happy for her when she got out.  We kept in touch after they left the hospital, and texted occasionally to see how they each were doing.  I was devastated to have to text her and let her know when Rowan passed away in December.  Then, I received a similar text just 3 months later, giving me the details of her memorial service.  I just could not believe it.  How could they both be gone?  I thought they should have grown old together, and shared the story of how they met and became friends in the hospital.

This past weekend, God showed us how mysterious (but perfect) his ways are.  Her Mom was going through some of her daughter's things and found a card that the little girl had made for me after I had texted her Mom to let her know that Rowan passed away.  Her Mom had misplaced it back then, so she never mailed it to me at the time.  She took pictures of it and texted me the photos this weekend.  It is so precious and priceless, but not just to me...to her own mother now too.  I cried my eyes out when I read her message to me.  She was just a year younger than Rowan.  Her words to me, encouraging me, urging me to "just pray"...were not just meant for me now.  Now they were meant for her own mother too.  So poignant.  I told her Mom, "You were meant to misplace that card months ago.  Now you can take the advice she was giving me, and read it as if she is speaking directly to you yourself."  I told her to keep the card as long as she wanted, even it that meant forever.  That just seeing it was enough for me.  She needed it as much or more than I did right now.  God meant for her to find it, after her daughter passed...not to have mailed it to me after Rowan did.

Look at this priceless card:

I know this story is sad.  We are human...so we are sad.  Both of these young children died within 3 months of each other, as a result of us trying to give them a new lease on life, as a result of transplant related complications.  Both of us mothers gave our marrow to try to save them (and then Rowan's Dad did too).  We both have huge holes in our hearts and in our lives now.  But we were blessed.  We were blessed to have our beautiful children for the years we did.  We were blessed to have met each other.  I am blessed by her daughter's amazing card, which she originally made for me, but I pray it blesses her own mother now too.

London, you were correct: Rowan was "a strong boy"...but you were "a strong girl" too.  "Now he does not need to be in so much pain", but "now you do not need to be in so much pain" either. "He was really nice", and "you were really nice".  But most importantly, "all we need to do is pray" and yes sweet London, "God is on our side".

Sweet angel...thank you for this drawing.  God, thank you for letting her Mom misplace it all these weeks, so that she could find it when she needed it most.  Now it is a blessing to us both.  London, I know Rowan probably met you at the gates of Heaven, with arms wide open...and that you two finally were able to touch, to hug, to hold hands, to run together and to play together...for the first time...because you are both healthy, whole and free from pain...forever.  Have fun together until we get up there with you, and please give us signs that you are near us, as often as you can.


Saturday, April 22, 2017

"My Color" by Rowan

While Rowan was in Seattle for his transplants, he had the opportunity to work with a wonderful creative writer on several occasions, from his hospital bed.  He wrote poetry with her, and even worked on the writing that would eventually become his eulogy for my mom, which was read by her Pastor in Ohio on Rowan's behalf.  It is a wonderful writing program and though some days were harder for Rowan than others, the outcome of his writing with her, will be cherished for the rest of my life.  For instance, this poem:

While I was in Seattle this month, I was asked by the Pediatric Advanced Care Team, to read Rowan's poem while they recorded it on video, so it could be a part of a Poetry Program this week.  I did my best to get through it without crying too hard.  Rowan helped me out, and I was able to do it in one take.

Yesterday, they sent me photos of it being presented on a projection screen, to a room full of people.  If you know me, you know that I do not like to speak in front of people (I prefer writing:).  However, I was so blessed and honored that they shared Rowan's poem as part of their collection this year.  I know it must have made Rowan so very happy too.

I got to visit with the Creative Writer who worked with Rowan, along with all of his other therapists (PT, OT, Music, Art, and Speech), again while I was in Seattle this month.  I brought them donations from his foundation, in his memory.  They brought coffee, bagels and fruit to our little get together...and ironically (or not;) there were oranges.  The creative writer's adorable son (also a red-head;) was with her (because it was her day off and she so sweetly still came up to the hospital to visit with me). 

As we talked, she gave her son an orange wedge, and I teared up immediately...it was a sign...it was like it was a scene straight from Rowan's poem... (not to mention the fact that her son looks like Rowan when he was a baby)...

"...biting it to suck the juice out, the best part,
especially when they're very juicy,
then using the rind to make a smile..."

It was such a sweet moment, and I knew that it meant Rowan was there with us. 

But that is not the end of the story... when I returned from Seattle, I received this letter:

Such an amazing honor.

I love you baby, and am so very proud of you!  You're legacy continues to live on in so many, many ways...and now your poem will too.  And orange will forever be "your color"... sunrises, sunsets, new day, new life.

*A funny side note, for those that don't know why Rowan mentioned my perfume in his poem... when he was receiving my t-cells during transplant number one, nurses recommended that we have a bucket of cut up oranges for him to smell, because the preservative that they use to keep the t-cells safe smells horrible.  It's called DMSO and it smells like a can of old creamed corn (there is no other way to describe it).  They warned us that his skin and breath would even smell like it for hours after the cells were infused. Well, they were right! We tried the cut up oranges, but it wasn't strong enough for Rowan. At one point he pushed the tub of oranges away and said, "That's it! This isn't working Mom. Please, get me your Dolce & Gabbana perfume!" We all laughed out loud and the nurses applauded his good taste in perfume.  I did get my Dolce & Gabbana for him, by the way.  I sprayed him, his pillow, his bed, myself, everywhere...and it worked...and it's one of my favorite parts of his poem.*