Disappointment...done right!

Everybody faces disappointment...everybody!  It is typically a pretty bitter pill to swallow... for most of us anyway.  This past week, I had two pieces of disappointing news to deliver to Rowan.  In the end though, not only did I take it a lot harder than he did... I ended up learning a few things from him.

#1

Rowan signed up for Soccer again this season and has been anxiously waiting to hear if he gets on a team with any of the same kids from his team last season.  Unfortunately, we already knew that one player moved out of town, one decided to play football, one went back to baseball, one moved up to a higher league, and the others...we had not heard about yet.  I registered Rowan, asking them to place him with anyone left in the league from his team last season, and we waited.  This past week, we received an email from Rowan's new coach, along with a roster of the kids on his new team.  I realized right away that they were all new names, as in none of them were from Rowan's team last season.  I was worried about telling him, because he has been waiting several months to play soccer with his old buddies.  Finally, I broke the news.  He was bummed at first, and almost looked like he would cry.  However, after a few seconds, he smiled and said, "Well, I made 11 friends on the first night of practice last year, I guess this just means that I have 11 new friends to make this year too!"  

That is disappointment done right!

#2

Rowan auditioned for the Woodlawn Theater's production of Peter Pan Jr. on Saturday.  He was so excited to get back into acting, and to "feel like a normal kid again".  He was thrilled to be in the same audition group as some of his best acting buds, and happy to hear that one of his other best acting buds was trying out the next day.  Everything went great Saturday, and they were told that they would get the casting emails by the following Friday.  Unfortunately, the very next night I received an email from one of Rowan's buddies, that he was counting on being in the play with.  He told me that he couldn't explain why, but he would not be able to be in this production.  He wanted to let me know that he wanted to get together with Rowan again sometime soon though.  I broke the news to Rowan, who at first burst in to tears, so sad that he would not be in the play with this friend.  I tried to console Rowan, telling him that at least they would remain friends, whether they were in the show together or not.  After a few minutes, Rowan calmed down, then he suddenly got even sadder and said, "Oh no, what if it's a money problem, or someone is sick in his family, or his parents getting divorced, or something like that?!"  He was more overcome with worry for his friend than he was with his own disappointment about not being in the play with him. 

That is disappointment done right!



What is disappointment done right...it is knowing that:

~Things aren't always what they seem.

Sometimes we learn lessons during the most difficult of times.

~It isn't always just about us.

~We don't always get to be on the team that we want to be on.  Instead of being disappointed, or giving up, we should be thankful that we have new team members!

~Sometimes, we aren't placed with our best friends, or they don't join us in our next adventure, but you know what...they may have more serious issues of their own to handle, so we should pray for them, rather than feel sorry for ourselves!

Thank you Rowan for reminding us of these life lessons, and for teaching is how to handle life's disappointments, graciously and gratefully!


A few more reasons to be encouraged by Rowan's outlook during these situations is that he had his first soccer practice this week, and was thrilled to meet new friends.

He also got the Woodlawn Theater "Peter Pan" cast list today and he earned the role that he wanted, "Michael Darling", which he couldn't be happier about.

Thank you for reminding us Rowan, that missed opportunities are sometimes simply new opportunities, and that losing friends, sometimes just means gaining new ones, but that either way... God provides for us.

Now, please mark your calendars for December 5th (3 pm), 7th (7 pm) and 9th (7 pm), and come watch this talented group of individuals in their performance of "Peter Pan Jr." at the Woodlawn Theater in San Antonio, Texas.

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Angels, angels everywhere...even in the mail.

Rowan received a special package from a little girl who is a pen pal of his recently. I happened to have grabbed the mail on my way out the door that day, so I could go through it all while Rowan slept at infusion clinic.  There was a picture drawn by the little girl and a note from the Mom inside, explaining the two gifts that were in the envelope. Ironically, Jalene's Mommy stopped by clinic that same day, right when I was opening the package and reading the note.  

Inside were two angels.  One was a hand painted "healing angel" on a small card.  They had asked an artist to make Rowan a special angel, just for him.  The wings were large and curling inward, and she said that they were wrapping Rowan up, to help him heal.  It was beautifully done and a beautiful sentiment. 

The artist also wanted to do a small pocket angel for Rowan to carry with him in his pocket, to represent his angel friends who are always with him.  This angel had dark hair, just like Jalene. It was so precious.

Rowan was still asleep, but Jalene's Mommy and I looked at the angels and the note and agreed that the rock could be a little reminder that Jalene's angel is always with him.  I took a picture of Jen with the angels and Rowan, since he was still sleeping.

Rowan finally woke up around 2 pm and was happy to see Jen there.  He smiled before he even opened his eyes because he heard her voice, and then he reached back and hugged her.

The love he has for Jalene's Mommy is so deep.  He worries about her, they text each other, and he prays for her every night.  Just a couple nights ago he was hugging his Jalene bear in bed and all of the sudden said "Mommy, anything you see on Facebook about Jalene, send it to me please, OK?"  So sweet.

Once Rowan woke up more, he looked at the package, the picture Brieley had drawn and the angels.  He loved them!  He knew right away that the pocket one was Jalene, and he stared at the healing one and said, "I'm definitely taking this one to Seattle with me when I get my transplant. I'll keep it in my little Bible until then."

Thank you Kim & Brieley, for your friendship, your prayers and these two precious angels for Rowan to keep.  He will cherish them both, always.  

Now, I want to show one of the pictures again... 

I took this one this afternoon, so I could have a close up of the pocket angel for this post.  It is in a completely clear cellophane enclosure.  I took this picture in my living room.  There were no lights on at the time, but notice the colored light shining on all four corners?  And notice how they are pink on one side and yellow on the other!  Rowan noticed this right away and says it proves this is Jalene's angel for sure:)  He says the light is her smiling at the pocket rock angel.  You may remember, he did her garden all in yellow and pink, and every picture he draws for her, or in her memory is all yellow and pink, etc...so how perfect that the photo is beaming with pink and yellow light:)

You can bet Rowan will carry this with him, as a perfect reminder of his friends in Heaven who are still in his life, daily, especially Jalene...

"Mommy, if I could make a time machine..."

Rowan said something last night, that was just so sweet, so special.  It sums up his heart and faith, perfectly.  It was just a sentence or two, but it deserves it's own entire blog post.  It's that important.

I was cooking or cleaning up in the kitchen.  I was most likely tired, and I'm sure I wished I was in bed already.  And out of the blue, Rowan said, "Mommy, if I could make a time machine, I would go back in time and live my life all over again.  That's how much I love my life."

Talk about being stopped in your tracks.  Talk about perspective.  Oh how I wish we all loved our lives as much as Rowan does.  If you took the time to read or calculate all he's been through in 9 short years- the doctors, the medicines, the "pokes", the fevers, the surgeries, the hospitalizations, the funerals, etc., you would realize... if he can love his life, how can I complain about mine...ever. 

Because, in good times...

...or even in bad...

Rowan loves his life enough to live it over again.

"I'm glad I'm sick."

Anyone whose had a child spend a lot of time in hospitals, or clinics, or who battles a serious or long-term illness, understands the friendships that form under these unfortunate circumstances.  Some of these kids don't go to school for weeks at a time, or years, or in Rowan's case, ever.  So, they don't get to have play-dates with friends from school, or go to sleepovers at their house.  They spend most of their time with a parent, nurses and doctors in a hospital room, or isolated at home with their family. Don't get me wrong though, these kids find friends, just in unlikely places.  Most of Rowan's very best friends, he met either at the hospital, a doctor's office, or in the infusion clinic.  They meet in the play room, or do art therapy together, while they are each attached to their respective IV poles. These friendships are so precious, and become so strong, very quickly.  They relate to one another, look forward to seeing each other (even if it means they are both sick in the hospital), have no shame (hospital gowns, ports being accessed in front of each other, hair loss, and sometimes even getting sick in front of each other), no expectations, and most importantly, they worry about each other prayer for one another daily.

Today, we had an extremely rare opportunity to get to hang out with one of those hospital  friends, outside of the hospital.  That's right...OUTSIDE!  Rowan went to the zoo with his sweet friend Charlotte, who he of course met in the hospital play room 6 months or so ago, while he was battling sepsis, and she was going through chemo.  The joy in their smiles nearly brought me to tears several times today.  See for yourself...

They ate dip-n-dots together...

Went to Rowan's favorite exhibit, the hippos, of course...

Charlotte gave Rowan the bracelet she had just gotten at the gate.  I asked her if it was because it said "hippo", and she said "No, just because I want him to have it."

They got matching snake bracelets too...

Rowan is deathly afraid of carousels for some reason.  The up and down really messes with his equilibrium and he usually refuses to go on it, or cries when he does.  However, when Charlotte wanted to go on the carousel today, Rowan said "I can do it Mom, I'll just one that doesn't move, if she'll be by me."

They were just so cute!

They even put on a short "Underwater Theater" show for us, with sychronized swimming, bows and curtsies...

Played hide-and-seek...

Climbed through tunnels...

And had a blast together...

On our way back out to the Zoo gates, Rowan said "Mom, don't forget to go get Charlotte a new bracelet since she gave me hers."  I just love how selfless and caring they both are to each other.  It was priceless.  

This was such a rare, unusual, yet amazing day.  To get to do normal kid stuff, with a hospital buddy, outside of a hospital, is almost unheard of.  On the way home, I just kept thinking that there weren't words to describe how thankful I was for the opportunity to watch these two beautiful fighters play outside...no words.  Rowan of course did have the words though, just not the ones I was expecting... 

Tonight he told me, "I'm glad I'm sick". I of course responded, "What?! Why?!"  And he explained, "If I wasn't sick, I would never have met Charlotte, and we would never have gone to the zoo today, and she wouldn't be my friend.  So I'm glad I'm sick."

I just love how he thinks.  I was grateful for the day, and grateful for their friendship, but Rowan takes it a step further and even appreciates that he's sick.  I hope this inspires you to try to see the positive things that come out of seemingly negative circumstances.  They can be some of the most beautiful parts of your life.

This post is dedicated to:

 CJ

 Mario

 Christa

 Meghan

 Madison

Bethany & Breanna

Jared

 Jalene

 Charlotte

 Sophia

 Loren

Walker

  Harley

& Rita

 and all of the other beautiful hospital friends Rowan has met along this journey so far,

and:

Chrissie

Avery

& Julian

 who Rowan says he "met through God".

Be still, and know that I am God...

Here is Rowan's Bible verse picture for the day...

He says that the picture he drew is himself, taking a deep breath as he walked up to Chrissie's casket. 

I didn't tell him what to draw.  This is simply how he interpreted this Psalm, all on his own.

Rowan explained it to me, saying that he was a little nervous, so he prayed for God to calm him down.  Then, he says God reminded him that Chrissie was with him in Heaven, and that God is always with him too.  

Of course this is a beautiful message, but what blows me away even more is that Rowan was only 3 years old when he saw Chrissie's body in her casket...3!  I am amazed that he immediately chose this particular moment of his life to draw, in order to explain what this Psalm means to him.  And it is a perfect example!

What a scary time it is when someone dies.  It's normal for us as adults to cry, be sad, question God, or even get angry.  But, Rowan, at the age of 9, remembers how God calmed him at the age of 3, during a friend's funeral service, like he was telling him: "Be still and know that I am God!"

Here are two pictures of Rowan as we drove away from Chrissie's funeral that day.  He is holding one of the pink balloons from her Celebration of Life.  Look at his smile.  He definitely left with peace and joy in his heart, not sadness.

I pray this blesses some of you as it has blessed me tonight, and I hope it reminds you to take a deep breath and remember Psalm 46.

"See Mom...sometimes we think it's a wrong turn or a bad day, but really God just has a different plan than us."

Today started out kind of crazy.  I had to get up at 5:00 am because Rowan and I were driving to Fredericksburg for a 5K run.  First, Rowan's central line wasn't flushing well and I couldn't get blood return. I changed the cap, put as much heparin as I could get into the clogged line, and told Rowan that we needed to let that sit and if it wouldn't flush in an hour or two, that we would need to make a trip to the hospital for some tpa.  Then, I went downstairs and our 2 large dogs had gotten sick all over the kitchen, multiple times overnight...like 20 times!  As soon as I cleaned it up, they started at it again.  It was disgusting. One of them- the Lab "Zeke" had been coughing horribly all night and sounded like he had kennel cough (we boarded them just last weekend).  I didn't know what to do.  Once we finally left, and I started driving in the dark through the hill country, I accidentally ran over a bunny, killed a possum, and then a few miles down the road, hit what looked like a wild turkey!  It was unreal.  I have to admit, a couple of times I wondered if I should just turn around, and considered that maybe I was not supposed to go to the charity run this morning. 

Then, I thought about the importance of the run, and in whose memory we were participating.  This sweet angel's face came to my mind, and I knew that none of these truly trivial issues should stop Rowan and I from getting to Fredericksburg in time for the run.

And I thought of her parents, and how much I wanted to be there to support them, and honor Avery's memory.

Avery Lynn Canahuati was diagnosed with Spinal Muscular Atrophy (SMA) as an infant.  Her parents created a bucket list for her, and made many special memories as they checked some of those items off.  Unfortunately, she passed away before she could complete them all, just before she turned 6 months old. Since her death, her parents have been able to raise over a million and a half dollars for SMA research in Avery's name (another bucket list item).  Today's BrAvery run was held in order to raise SMA awareness and to help raise money for SMA research.  Rowan and I were honored to participate and so excited to help such a worthy cause, so more precious angels like this beautiful baby girl can live longer fuller lives.

By the grace of God, Rowan and I somehow did arrive on time.

Those of you who know Rowan well, know that he (a) is a late riser, and (b) does not have much stamina when it comes to walking long distances.  I don't know what we would do without his medical stroller.  There are just so many days where either one of his medical conditions or medicine side effects, cause him to be extra sleepy, weak or off-balance.  He typically can't even walk all the way from the parking garage to clinic on his own, and he often doesn't wake before noon or one o'clock.  However...a few days ago Rowan asked me, "How long is this race?"  I told him "3.1 miles".  He told me that I better bring his medical chair/stroller, and I said that I would for sure.  Then he asked me, "What is this run called?"  I told him it was the "BrAvery Run".  He immediately perked up and said "Bravery, BrAvery, oh br-AVERY!  This one is the one for baby Avery?"  I told him it was and he said, "Never mind, I won't need my chair.  I'm going to walk it myself.  She's worth it!"  

Now, I of course knew, though valiant, that his plan was probably a little lofty for him.  There was just no way he would walk or run 3.1 miles, or even half of that, especially at 7:30 in the morning.  So, I told Rowan he could start the race in his chair, and walk whenever he felt like it.

Here he is with Laura, Avery's Mommy, who is as beautiful on the inside as she is on the outside:)

The sun was barely up when they started with an opening prayer and the National Anthem.  

Then, we were all off!

I only pushed Rowan about a block in his chair before he told me to stop so he could get out and walk himself.  His smile says it all.  He was so proud to be walking for SMA, walking for Avery.

Granted, his energy didn't hold up very long at all (not even the length of one block), but I told him it was the fact that he was there, and that it meant just as much for me to push him the 3 miles as it did for him to walk it.  So, Rowan and I did our very first 5 K ever.  My goals were simple: finish the race, don't come in dead last, and try to do it in under an hour.  So, we walked most of the time, did not come in last, and did finish in under an hour!  Success!

As we rounded the corner for the finish line, Avery's Mom, Laura told Rowan, "Somehow, I always get a burst of energy at the end, once I can see the finish line, then I can run again.  There's just something about it."  Rowan looked at me and smiled, and said, "OK, let's do this."  

He got back out of his medical chair...

and he ran...  

  he ran for SMA awareness...  

he ran for baby Avery...

...and for her family...

...and he had such a great time doing it!

I was so very proud of him, and felt blessed to share this moment with him, with Avery's family, the other runners, and with the other families with children battling SMA or those with children whom had lost their battle...

 It was a humbling experience.

The final event was the children's "Fun Run".  It was a very short sprint, for all of the children in attendance.  Rowan wanted to do this one as well, and he ran the whole way.

...crossing the finish line for a second time...in style, with his peace sign:)

Rowan received a blue ribbon for the Fun Run...

...and a 3rd place medal for his age group, in the 5 K...

Not bad for his first time:)

Just as Rowan and I headed out, it started to rain really hard.  We were so glad the weather had held out until after the race.

We weren't headed straight back to New Braunfels after the race.  Rowan and I had two more stops in San Antonio- one to drop off some back to school supplies donations to a friend for her classroom, and another to drop off some back to school clothes for a child in need.  I ended up making a wrong turn, taking us somewhat out of our way.  Rowan heard me say I went the wrong way, and asked me if we were lost.  I told him we weren't, but that I just made a wrong turn, so it might not end up being the fastest way to go.

A few minutes later, Rowan looked out his window and yelled, "Mommy, look! Avery is so happy about the race today!"

I looked over and saw the longest, brightest, most stretched out rainbow I had seen in a long time.  These pictures might not do it justice, since I was just trying to snap them quickly out of the car window, but I hope you can see it well enough.  After about 30 minutes, Rowan told me, "It's still following us!"  And he was right.  We could see it for miles and miles.

Rowan was quiet for a while, and when he broke the silence, he blew me away once again with his wisdom and faith.  He said, "See Mom, sometimes WE think it's a wrong turn or a bad day, but really GOD just has a different plan than us. If we didn't make a wrong turn, we might not have ever seen Avery's rainbow.  And it started out like a bad day this morning, but it wasn't at all!  We just have to be patient...He'll show us."

Amen Rowan.  Lesson learned.

Next time you think you're having a bad day, or you get upset about making what you consider to be a wrong turn...just wait.  You never know what God has in store for you!

And please, please, don't take a single moment of your life for granted...

***To read about Avery's Story, or for more information on SMA, check out her family's blog: www.averycan.blogspot.com, go to www.thegsf.org to follow the Gwendolyn Strong Foundation.  To donate or get involved, visit Sophia's Cure Foundation at www.sophiascure.org or www.fightsma.org.