"Sunflowers friends and dandelion wishes": Rowan and Roman

Rowan's young friend Roman and his family were in town this weekend so we got together for lunch and then went to visit Rowan's grave. On the way to the cemetery, Peter, Roman and I went in HEB  to buy flowers. Roman picked out these beautiful sunflowers for Rowan.

Once we arrived at the cemetery I laid out my blanket and we sat down next to Rowan's grave.  As I started to lay my flowers at the base of Rowan's grave, Roman was about to do the same... but he didn't.  Instead, he looked around and took one of the sunflowers over to a more recently placed grave.  He stuck the sunflower into the ground, sticking straight up from the dirt, and told us "I planted it".  

He came back and got another one and "planted" it at our sweet friend Olivia's grave, which is just a few feet from Rowan's.  

He did this again and again, "planting" all of the beautiful sunflowers at other people's resting places. 

 Of course his sweet mom and dad apologized to me and asked him a few times, "Roman, don't you want to give some to Rowan?", but I reassured them that this was not just fine, it was perfect, it was what he was supposed to do.  I told them, maybe the other families need to see them there instead, and we smiled thinking that Rowan probably loved this... maybe Rowan even told him to do it;) 

 It was the sweetest thing!  I am sure that none of us will ever forget it.  

Just like last year, when Roman pulled out his little toy tractor and digger and started "digging" in the dirt that lay over his friend's grave, blowing the only dandelion we could see, before going over and leaving the toy on the grave of an infant nearby.  That toy remains there a year later, on a stranger's grave.  A priceless reminder, that there is no "right" or "wrong" way for a small child to visit the gravesite of another child.  At it's very core, it feels unnatural, unfair, and it is certainly unwritten... but it happens, and unfortunately, in the life of medically fragile children or children with rare diseases, it happens all too often.  Rowan lost way too many friends before he himself died... more friends than I have lost adults in my adult life.  I feel awful that Roman even has to visit Rowan at a cemetery.  I have zero expectations of how he should act when he is there.  But, he has behaved perfectly each time! Because he acts how he feels, and that is all we can ask or expect of a child.  And this time he wanted to "plant" sunflowers in these exact spots.  

And I am blessed to have been there to witness it.

I love this family so much.  We met via Facebook because our boys were battling the same rare disease as well as severe multiple food allergies, and neither of them had a bone marrow match available in the world.  We live about 3 hours apart, both in Texas.  Our boys are named Rowan and Roman... aka "the Texas RoRos".  After over a year of being "FB friends", we met half way just before we left for Seattle for transplant, so that we could finally meet in person.  Then, when Rowan started to really decline, they immediately packed up and flew to Seattle to see us.  They saw Rowan, from outside his sliding glass door, the last day before he slipped into a coma.  Him smiling and waving to Roman is one of the last videos I have before Rowan moved to the PICU, where he died 2 months later.  

We will be friends for life now, not just FB friends, true friends.

Now, let me back up a little bit...

When we met up with them in Austin, the first time Rowan and Roman met each other, the last thing Rowan did in the parking lot of the restaurant, was blow on a dandelion and make a wish.  

His wish was that Roman find his match.  Rowan also told me he couldn't wait until Roman got older so he could help teach him things, especially about how to deal with his disease.  He wanted to be like a big brother to him.  I'm sad that never got to happen, but I believe Rowan will always watch out for Roman from heaven.  He is now his guardian angel.  

Roman now has a little baby sister, Luciana.  The day she was born (before I even knew Nicole had gone into labor), I had a dream where Rowan was once again blowing a dandelion. This was so very meaningful because Luciana (thank you Jesus), is a  perfect, non SDS affected, match for Roman should he get to the point of requiring a transplant!  Rowan's dandelion wish came true.

I have been working on a gift for sweet baby Lulu for months.  I have not completely finished it, but once I knew they were coming to visit, I wanted to at least show it to the Shen's, so I brought it with me Saturday.  It is a baby quilt I made her.  The only thing left to do is hand-quilting the layers together.  

I made poor Nicole cry (I'm sorry), 

but I am so glad I was able to show it to them there at the cemetery.  It just felt right, giving it to them at Rowan's resting place.  

I know he was watching us, and I have no doubt that he added his love to the quilt.  

I used materials with special meaning to make this quilt, the most important being several prints that had dandelions on them, and on the back...material from the sleeves of 3 of Rowan's personal shirts...2 of his "Rally for Rowan" shirts, and his own Roman/"Brave Eggroll" shirt.  I hope to finish the hand-quilting this month so little Lulu can enjoy some tummy time on it, but I am beyond blessed to at least have photos of the beautiful Shen family with the quilt, sitting next to Rowan's grave.

Lulu, I promise to finish it soon so you can lay on it, play on it, and enjoy it...

And Peter... oh Peter.

Thank you for being you...

for being one of the most selfless, compassionate, human beings I have ever met.  

You are a rock to your family.  

Please know how great you are. 

And thank you for praying "talking to my boy" each time you visit.  

It means the world to me.