Ian's essay..."Living in Rowan's shadow...coming into the light".

Ian is the best big brother any family could ever ask for.  He has never complained, never been bitter, never ever felt sorry for himself...even as he lived in Rowan's (and often Zoe's) shadow for ten years.  Instead, Ian loved, supported, and cheered us all on, comforted us when we needed it, kept his nose to the grindstone, excelled in school, etc.  If you really think about it...Ian has been the "unsung hero" of the family...never demanding attention, actually, always shying away from it.  He loves without boundaries, and without request for anything back in return.  To Rowan, Ian hung the moon...to the rest of us, Ian has held us all up, and kept us together.  He is our glue.  A quiet, shy, behind the scenes kind of glue...but our glue.

Ian is applying for a very prestigious leadership academy this Summer.  He had two essays to write for his application to this program.  Tonight he brought me a jump drive with his second essay on it.  This is completely unedited, unassisted, unbridled...this is how Ian feels.  It brought me to tears and to my knees simultaneously.  I am so proud of this boy...not just for his writing, but for the man he has become, despite the boyhood he lost out on. I love you Ian.  And yes, I know that none of us would change any of it for the world...but I am still so very proud of you!

 

"For most my life, I have molded my schedule and spare time around that of others, namely my little brother, Rowan. I guess you could say I took the whole “middle child syndrome” to heart, which wasn’t too hard to do when I could walk into our local hospital and be passed by six nurses on my way to the second floor, each asking if I was “Rowan’s brother.” He was a fiery personality that brightened the lives of everyone who had the chance to meet him. He was the sun that my world revolved around. He was only ten. For much of this last year, he and my mother spent their days in a hospital room in Seattle. He was enduring an experimental form of bone marrow transplant, and she was comforting and watching over him. Come December “last year” took on a new, more horrifying meaning for the all-too-young boy. He passed on the fifteenth of December, 2016; on my older sister’s birthday; five days before my own. It was… is tough, to say the least, but from the moment we landed in that Seattle airport that night, the night he died, I vowed that I wouldn’t let this change consume me. I am still going to dedicate every day to him, but I’m not going to let sadness overcome me. I’ve been learning, slowly, how to live my own life; how to become my own protagonist. I’ve been drawing, painting, learning to animate; all things that I have wanted to do more of and improve at, but never could when I was living as a supporting character in another story. From his passing, if there is one thing I have learned, it’s that I can help and support others’ lives without forfeiting my own."  ~ Ian Windham

My new Friday night normal...

My new Friday night routine...

Last Friday, when I picked Ian up from school I asked him if he was up for accompanying me to the cemetery, to go visit Rowan's grave.  He of course, being the amazing son he is, knew that I needed this, so he said "sure!"  As we started to drive out to the cemetery, Ian said, "Should we take some fries out there to share with him?"  I told him that was a great idea, and that we would run through Chic-Fil-A, after we stopped by HEB to buy him some flowers.

As soon as we walked in to HEB's floral department, Ian and I both caught sight of a sign, leaning up against the flower stands...

Of course it said...
"Let it Be"...
Of course...

(Thank you Rowan:)

Ian and I each chose a simple orange rose to take Rowan, to lay on his grave.

Then we went through Chic-Fil-A's drive thru, got our food, and asked them for "all the sauces", because that is something Rowan dreamed about being able to have..."all the sauces in the world!"  He had so many food allergies, he didn't have many options, especially at drive thru restaurants.

When Ian and I arrived at the cemetery, we went to Rowan's temporary marker, laid out a blanket, and set out our food, and his flowers.

We sat down next to Rowan's gravesite, on the blanket...and there was just complete silence.  This was the first trip back since he was buried...for Ian and I...for any of us.  I didn't know how to do this.  That's all I could think.  What do I do?  Do I talk to him?  Do we talk to each other about him?  How does this work?

But you know...as Ian and I sat there in silence for a few moments, I realized, I don't think there is a right or a wrong answer.  You do whatever feels right...or as 'right' as it can feel.  Whatever makes you feel better.  Whatever brings you peace.  Whatever helps you in that moment.

Despite not knowing how to do this, we had a really nice visit.  The weather was gorgeous when we arrived. 

And the sunset that fell after we had been there a little while, cast amazingly beautiful light all across the grounds, in true Rowan fashion.

  

  

 

Ian and I decided that this could be our new Friday routine...our new Friday normal...whenever possible, and we told Rowan we would see him soon.

 one more look back...

...and we headed to the car, to head home for the weekend.  It was a quiet drive home, and a few tears fell from my cheek, but it was also a peaceful drive home, and I was so glad we had made the trip out there.

I'm going to look forward to Fridays now...to quiet time with Rowan...to blankets on the cemetery grounds...to sunsets...and sometimes even to French fries...with "all the sauces in the world".

Love you my sweet boy...and miss you so very much.

Part 10: "Burying Rowan with his angel friends..."

Brian and I knew immediately that Rowan's service would be closed casket.  His body had just endured too much those last 6 months.  He wouldn't look like the Rowan we all knew and loved.  Now, I know I already did a post about what clothes we buried Rowan in, but just before the service started we also tucked a few of his favorite items in with him...his angel friends stuffed animals.

The Comal County Sheriffs Deputies that were in attendance came and surrounded Brian and I in a semi-circle, with their backs to us, facing out toward the crowd, creating a privacy screen for us to open the casket one quick time.  When we lifted the casket lid, of course Brian and I both gasped and broke down in tears.  I only glanced quickly at his face and hands, kissed the robe at the top of his head and then his forehead...and I handed him his friends.  Most of you know, that he has multiple friends in heaven, who went on before him.  Three of those children, he is very close to their parents still to this day.  All three of those families had gifted Rowan one of their child's stuffed animals after their child passed.  He had Chrissie's 'Jingle lion', Jalene's 'Angel bear', and Julian's 'Pedro, the blue giraffe'.  Rowan took one of those stuffed animals back with him to the OR for every surgery he had back home in Texas and in Seattle, and he slept with one or more of them every night, especially in the hospital.  It made him feel so close to them, knowing they were theirs, often saying, "If Pedro helped Julian through so much, I know he can help me too".  Or just before heading back to the operating room each time, he would quickly search his bed and say "Wait, do I have Jalene?" or "Where's Chrissie Lion, I can't go without her."  These 3 stuffed animals, were more than just stuffies, they were his "angel friends".

I lovingly squeezed Jingle Lion, Angel Bear, and Pedro one last time myself, because they had brought so much comfort to me as well.  I went back and forth originally as to whether or not I should keep them for me, or bury them with him.  In the end, I decided his body needed to sleep with them forever, as I knew he was running with them all in Heaven, as the angels that they all were now.  It just seemed right, fitting.  They had never left his side the entire last 6 months, so I wanted them to stay with him.  One by one I laid them in the casket, one last time, giving them to Rowan. 

Jalene's Mom had also had a shirt made for Rowan, with a picture of Jalene and Rowan, and she asked me if I would put it in the casket with him as well, since he never got to wear it here on Earth.  "Forever Together...Jalene & Rowan".

I touched his head one last time, and with that, we closed the casket for the final time on our baby boy.  Never to see his Earthly body again.

I cannot even begin to describe the heart breaking finality of that moment.  It felt like the closing of the casket, sucked all the air from my lungs.  I had to sit down immediately, or I would have collapsed.

I know that was just a shell of Rowan.  Just his body.  I know that his soul was long in Heaven, whole and new, no scars, no tubes, no lines...but still...it was hard to breathe.

I know we did the right thing having a closed casket, but I am also glad we took the time to tuck Rowan's angel friends stuffed animals in with him...they all belonged together.  Can't wait to see you all running and dancing in Heaven together.

I love you and I miss you Rowan.

I've had 40 days without you...

but you've had 40 days with Jesus...

"I'm not as strong as you think..."

All the comments on my recent blog posts abut Rowan's passing and memorial service have been people lifting me up as "so strong", "amazing", "an inspiration", etc.  Today that finally got to me, and I felt led to share the actual reality...I'm not that strong.  I am not that amazing.  I am actually, not doing so great.  I am hurting so badly.  I am crying so much.  I am weak.  Like Rowan, I am not invincible.  I am human. 

Most days, I don't know how to even get out of bed, or I go right back to bed after I take Ian to school.  I can't sleep at night, because when I close my eyes, I have flashbacks of everything I watched Rowan go through towards the end...the heart attack, compressions, ECMO, dialysis, suctioning blood from his lungs, his hands and feet turning blue, and then black...  If I do fall asleep, I wake up in a panic, from nightmares of me trying to save him, but I can't. 

I am recounting everything about the service in as much detail as I can, and doing those posts, for you all.  For those that couldn't be there.  For those that were there, but want to be reminded.  And for myself, so I never forget that day.  It was indeed a beautiful service, in every way.  The posts I have written are truly how I feel about every detail we planned out.  But that doesn't make me "strong" or "an inspiration".  It just makes me a mother.

Every where I look in this house I see Rowan's things.  I can't move them.  I don't want to.  I don't want to put him away in a closet or a box.  I need his things around me.  I need to touch them, smell them, see them.  But it also makes me cry...often.  Every corner holds a memory. 

His hats still hang by the front door...

His coat and scarf still hangs on the banister...

There are baseball caps of his all over the game room...

Iron Man toys, and unopened gift, fill his bedroom...

There are art supplies in every closet...

And his suitcases from Seattle, remain unpacked...

It's overwhelming in some ways, necessary in other ways.  It's too soon to go through it all.  Every toy I see, brings a tear now... reminding me that he will never play with them again, but also smiles, remembering times we did enjoy them.  Each hat, brings up a snapshot in my mind, of a happier time in our lives.  The art supplies, break my heart thinking of the paintings he still wanted to do, while making me smile, reminding me of all the amazing artwork he created over the years. I cannot and will not get rid of these items yet, or even move them.  I need to feel them near me.  I need to feel Rowan near me.

Moving forward without Rowan in our home, in our days, or next to me at night, is soul crushingly painful.  Every time I wake up...the reality hits me again within seconds.  You have about  half-second dreamy state of bliss upon waking where you think, "maybe it was all a dream"...then you feel the pain all over again. 

Grief is hard.  Grief is also individual.  Not everyone on our family grieves the same way, actually none of us do.  We all love each other, and offer support to each other, but we grieve separately. 

Rowan's whole life stood for "Hope".  He had the strength and faith of a hundred men put together.  I try to channel that every single moment of every single day.  I ask myself, "What would Rowan do?", or remind myself, "This is not what Rowan would want for me". 

I am trying.  I am praying.  I am hopefully, "getting stronger...every day".  But I just needed to come clean.  I needed you all to know, that while there is strength in my writing, in my blog posts...I am not where I want to be.  I am not that strong.  I still need lots and lots of prayer.  I am trying to be transparent here.  I do not want the world to think that I am breezing through this unbelievably painful loss...not by a long shot.  It wouldn't be fair for me to portray it that way.  This is not easy.  It is the most difficult thing I have ever done in my life.

Do I believe that I will get better...yes.  Do I feel that I still have a lot to give this world...I think so.  Do I know "that the sun while rise"... yes, it has every day, and it looks brighter and a more beautiful shade of orange each day too.  Do I know that Rowan is going to be helping me along this journey...yes, he already is.  Do I trust God...yes.

Rowan, please keep showing me signs.  Let your words from the past keep reminding me that I can get through this.  And until I finally get to see you again in heaven...be as near me as you possibly can.

I love you and I miss you Rowan.

I've had 37 days without you...

but you've had 37 days with Jesus...

Part 9: "My eulogy for Rowan"

Writing a eulogy for your child is something none of us ever plans to do, or wants to do.   But while planning Rowan's funeral it was never a question of whether I would speak...only what would I say.  He wasn't just my son, my youngest, my baby...he was my best friend.  I spent more time with him than with anyone else, rarely if ever leaving his side, especially when he was in the hospital.  In the 6 months prior to his death, I only left the hospital 2 times, and even then, I drove less than a half mile down the road for 30-45 minutes each time.  That is less than 2 hours that I was away from him in his last 4320 hours on this Earth.  And the first ten years, I took him to every doctor appointment, every infusion clinic day, stayed in the hospital with him every single one of those 1500+ days he was hospitalized in San Antonio.  I owed it to him, to honor him with my words at his service.  As afraid as I was, I had to be brave...for Rowan.

I wasn't at a loss for words.  I actually had too many words.  I wasn't sure which part of his amazing life to focus on.  He had so many messages (of faith, hope, and love), where would I begin?  I began by looking through old blog posts, notes on my phone, notebooks of his quotes, post-it notes next to my bed (for all those late night Rowan epiphanies), memos in my email on my laptop, etc.  And suddenly, the eulogy began writing itself. 

Below is a copy of my final notes for the eulogy, the papers I took to the church with me to read.  Now, I know I did not say everything on here word for word...I became too emotional at times.  And I know I added or paraphrased some things too.  But I also know that this contains most everything I said up there on stage at his service.  I did my best to honor his life, explain his death, while showing that he was ready, not afraid...actually never afraid, and that he had been preparing me his entire life...and was continuing to guide me now. 

In case you missed the service...

Here is the outline for my memorial dedication to my son, my baby, Rowan:

1.       Rowan’s last days…he was ready to go.

We all know how difficult Rowan’s life was, medically speaking.

Most recently…during the last 6 months, while away in Seattle:

                    He had been away from Texas for   168  days.

                    He had been inpatient for  146 days.

                    He was Day + 133 from his first transplant.    He was Day +58  from his second transplant.

                  He had been in ICU for 61 days straight.

What this little boy endured just during that time alone was incomprehensible, more than what most of our families collectively will ever experience in our entire lifetime.

Still, somehow, he seemed invincible.  How many of us said, “If anyone can do this, Rowan can.” Or, “imagine how great his testimony is going to be after he beats all of this”.

But Rowan was indeed human, just a little boy.  The suffering eventually caught up with him.  He was tired.  He was weak.  He was done.

One of the last two alert interactions I had with him, was when he was about to be intubated for the final time, 4 days before he passed.  He told me “let them do it, let them put the tube in, I’m tired…I’m tired of all of this…I just want peace and quiet” and he waved his hands at all of the monitors and all of the staff in his room staring at them.

3 days later, just after they revived him from his cardiac arrest.  He reached up, and wiped my tears.  HE WIPED MY TEARS.  I told him I loved him, that Brian, Zoe and Ian loved him, and that the doctors were about to try to put him on ECMO, that everyone in the room was trying to save him.  I asked him if he was scared...he shook his head no.  I asked him if he knew he was going to be ok…he nodded yes.  I asked him why, through a wall of my own tears.  He mouthed (over the breathing tube), “God and Jesus”.  I nodded and told him that I loved him.  He mouthed, “I love you too”.

Rowan had not walked in over 2 months.  His kidneys had not worked in that long either.  The amount of antibiotics, antifungals and antivirals he was on, and blood products he was requiring was astounding.  He could not breathe on his own that week.  He could not talk. His liver was sick. And in the end, his heart and lungs failed as well.

Rowan was ready to go.  But Rowan was NEVER scared.  Not even in the end.

2.       See, Rowan was actually ALWAYS ready to go.

Don’t get me wrong, Rowan loved his life, that we all know!  But, I documented dozens of times that Rowan mentioned his desire to meet Jesus, or to get to heaven, or described how happy his friends were in heaven.  It has been one of the main sources of comfort for me. 

Here are excerpts from just a few of those conversations:

“How did God create all these different types of Big Foot, Nessie, bugs, animals and people?  He’s amazing…so creative.  I can’t wait to meet him.  He can really give me great ideas of things to draw when I’m bored.”

 “Life is great!  But I think Heaven is gonna be even better.  Because in Heaven, I won’t have a line or a tube anymore, and I get to see Chrissie and Harley and your uncle Joe. And I’m pretty sure I’ll get to eat pancakes in Heaven.”

“Mom, I’m not afraid to go to Heaven.  Justin was so strong and happy there, and he wasn’t sick anymore. I think God gives me these dreams of Heaven so I’m not afraid when I get there…”

While talking to us about going to Seattle for transplant: “Mom, I’ll be okay … either way.”

(after me telling him that the next day, transplant day #1, was going to be the best day ever) “No it’s not.  The best day ever will be the day I meet God.”

Rowan was not just  excited!  He visited heaven so often in his dreams.  He couldn’t wait to get there.  That brings me comfort.

3.       Rowan is reminding me how to move forward now.

Leaving Seattle without Rowan, waking up without him, figuring out how to live without Rowan, has been next to impossible.  But thank God, he has constantly reminded me how I can and should move forward.  Here are just a few of the conversations, some of them from many years ago, that I feel were actually Rowan preparing me for this journey now.

Less than 5 years old      “Faith is believing God and believing in God…no matter what.  He makes good things happen, bad things happen, and okay things happen.  He lets bad things happen sometimes, so we can help other people.  If nothing bad ever happened, we wouldn’t have any compassion.  Having faith is knowing God is always by your side.  I didn’t learn faith, I was just born with it.  It’s easy to have faith.  It’s harder not to.  If I didn’t have faith, my life would be sad and miserable.”  (Rowan never felt his life was sad and miserable..he loved it with every fiber of his being)

Psalm 46 Be still and know that I am God… Rowan drew a picture of him sighing as he walked up to Chrissie’s casket.  He was 9 when he drew it.  He was 3 when experienced it.  Still, this is the first image that came to his mind as he drew a picture of what this Psalm meant to him.  (For a 9 year old to know how relevant that verse is during periods of grief is one thing, then for him to remember experiencing it himself at 3 years old??? Wow!)

(6 months after Jalene’s death) "180 days with Jesus! 180 days of no pokes.  180 days of no pain.  180 days of no medicine.  180 days of no Cancer.  180 days of Jalene smiling next to Jesus. I'm going to try to think of it that way." (23 days with Jesus, 23 days with no pokes, 23 days with no pain.  23 days of no medicine.  23 days of Rowan smiling next to Jesus.  Try thinking of it that way…and you will see things how Rowan saw things…and you will see how much it helps.)

(after visiting Julian’s graveside with his family) “When I pass away, please promise me you’ll only think happy thoughts.” 

(after praying at Chrissie’s memory leaf) "I wish everybody had their whole families here still for Christmas...but can you imagine what Heaven is like on Christmas!"  Then his eyes just sparkled as he smiled and said, "Christmas with Jesus..."  (You got your Christmas with Jesus Rowan. I bet it was amazing.)

4.       Living without Rowan, is the closest thing to living without oxygen I have ever experienced.  It hurts.  It physically hurts.  To have been given the gift of such a bright, brilliant, joyful, faith filled child… who taught me (and countless others) every single day of his life…and then have that light extinguished…I didn’t know how to handle that.  The loss was too great. 

Then I realized…I could not figure it out all on my own.  So, I started listening to videos of Rowan, recounting stories, rereading the blog, etc. and I realized that not only had God already written this, but Rowan helped write it too.  The quotes that I just read…Rowan spoke, but God gave him those messages. 

All along, I had thought those words had been to help Rowan cope with his losses…but apparently, they were also to help us cope with the loss of Rowan’s life now.  I’m listening God.  Thank you for your message of Hope, even in the darkest of times.  I’m listening Rowan. And “Every day…I will get stronger!”

I love you and I miss you Rowan, so very much.

Part 8: "Zoe's memorial speech"

While helping me plan Rowan's memorial service, Zoe told me that she wanted to speak.  I asked her if she was sure, and she said, "I'm gonna try".  I knew how much she loved her brother, and how very close they were, but I had no idea just how beautifully strong her words were going to be.  It ended up being one of the most poignant, perfect moments in the service.

She didn't share with me what she thinking of saying...not once.  I would ask every couple of days, are you sure you still want to get up there Zoe?  She would always say yes, but when I asked what she was going to talk about, she always responded with "I'm not sure yet".  And I mean, even up to the night before!  On the way to the Church, the morning of his service, as a bunch of us were going there early to set up and decorate, Zoe sat in the front seat writing her speech.  That's right, on the way to the Church.  That made me a little nervous, but I knew if she spoke from her heart, it would be just fine.  Still, she did not show me what she had just written.

A few minutes before the service started, my sister Jennifer, who had come from Ohio, told me that Zoe wanted her to read her speech.  I said that was fine, that I totally understood.  Heck, I still wasn't sure how I was going to get up there and read mine.

When the time came for Jennifer to read Zoe's letter, the church fell silent once again.  Of course everyone was looking forward to Zoe's words.  They knew how close my children were with one another.  Ian had drawn the beautiful portrait to honor his brother in the program, and Zoe had written down her feelings.  I don't think any of us expected it to be as powerful as it was though.  I have never been prouder of her.  She didn't have to be the one to get up on stage and read them, just the fact that she wrote the following...my heart spilled over.

Great job Zoe.  SO proud of you.

I love you and I miss you Rowan.

I've had 35 days without you...

but you've had 35 days with Jesus...

Part 7: "The Music"

Music is such a powerful thing.  It has always been very important in our lives.  Choosing just the right songs for Rowan's service and slide shows was not a task that was taken lightly.  I know, beyond a shadow of a doubt, that we made the right choices though.  I don't think I've ever heard as beautiful of music, seen as heart felt of performances, or felt as receptive and appreciative of an audience.  It was perfect.  Rowan was surely looking down, singing along, like the angel that he now is.

Zoe went to school with Edwin Bates several years ago, while they both attended NESA (North East School of the Arts) in San Antonio.  Rowan also had the honor and the privilege to perform in 3 plays there at NESA, when they were in need of young actors.  Rowan acted with them in Caucasian Chalk Circle, Les Mis, and Midsummer Night's Dream. Edwin's voice is so beautiful! I would often be brought to tears as I sat backstage and listened to him sing.  I especially remember crying every single time he sang "Bring him Home" from Les Mis, in the role of Jean Val Jean. Truth be told, even back then I thought, should anything ever happen to Rowan, I would love to have Edwin sing this at his funeral.  You may find that a morbid thought, but I will not apologize...it was a delicate, fragile life that Rowan lived, even since birth, so this was always a possibility.  Anyway...when Rowan did pass, I told Zoe, I need to fly Edwin here from New York, so he can sing "Bring Him home".  She agreed with Edwin coming to sing, but talked me out of that particular song, warning me it would be too sad.  I asked Edwin his opinion and he agreed that it may be too difficult to get through.  I listened to a video of the song in the hotel room in Seattle, and finally agreed, they were right.  We would never get through that song at his service.  Still, I knew that I needed Edwin to sing for Rowan's service.  Our family loves the Beattles, and one of our favorite movies is "Across the Universe".  Rowan and I especially, loved the song "Let It Be".  They all laughed at me, because every time we watched that movie together, I bawled my eyes out when "Let It Be" came on.  I asked Edwin if he could do that for us, and he agreed.  The next song, Edwin is known for, and for good reason.  I have watched the version of him singing it for his Senior Showcase, no less than 150 times over the past 4-5 years.  It is magic.  So moving.  Zoe reminded me of that song, and I immediately threw my head back and said "Yes! That is perfect".  So, we also asked Edwin to sing "Endless Night" from Lion King the Musical.  If you were there at the service, or watched it live and were able to catch him singing this song at the end of the service, you understand how powerful and moving this moment was.  It was the culmination of all of my feelings, so sad in the beginning, but ending with such a large, positive, hopeful, promise (like Rowan would want).  It made such an impact on us all.  Edwin, I cannot thank you enough for the honor and blessing of your presence and musical talents.  You made me cry, oh how you made me cry...but in a healing, healthy, needed way.  And further more, thank you for being an important light in Rowan's life.  You knew Rowan, acted with him at NESA, visited him in the hospital in San Antonio often, played with him, and eventually came full circle and honored Rowan's life, after his death, by singing at his memorial service.  God bless you for that.  For all of it.

The second musician and vocalist that played ukulele and sang at Rowan's service at Live The Life Church for his service was Kainoa Kamaka.  God has a funny way of bringing people into your lives.  And you just never know exactly why...until you do.  When Rowan and Jason Cox, from Marrow Match, came up with the song "Row Row Rowan your boat, gently down the stream.  'Marrow-ly', 'marrow-ly', 'marrow-ly', 'marrow-ly', life is but a dream", just before we left for Seattle, we had no idea how many more versions we would hear of it.  Church groups, seminar attendees, groups on retreats, business meetings, groups of friends, etc. would record their own renditions for the next 5+ months.  Undoubtedly the best version we ever saw posted on Facebook though, was that of Kainoa Kamaka and friends, sitting in a living room full of family and friends, jamming on their ukuleles.  We did not know them personally, but it fast became our favorite.  Rowan and I especially loved how they mashed it up with "One Love".  I must have played it for Rowan 50 times while we were in Seattle, and many of his nurses got to see it while they were at his bedside too. Rowan told me, "I hope I get to play my ukulele with them when I get back home to Texas".  I promised him he could do that.  I didn't know he would never get the chance to.  After Rowan passed, as I was packing up his things from the hospital, I came across his ukulele.  He played it so many times with Evelyn the music therapist.  It will forever be one of my favorite memories of our time in the hospital there.  As I packed it to be shipped home to Texas, I remembered my promise to Rowan. The one I could no longer keep.  To me, the next best thing was to ask Kainoa to play for Rowan, since Rowan couldn't play with him.  He immediately agreed to do so.  My song requests ended up growing though and Kainoa blessed us with songs at all three memorial events (the church, the cemetery and Enchanted Rock).  At the memorial service at the church, he did the most beautiful version of "Hallelujah" I have ever heard.  You could have heard a pin drop.  He took everyone's breath away with the music and vocals.  The church was just still, other than the song.  I am sure that Rowan was strumming along on his own ukulele from up above.  Thank you for that Kainoa.  It was simply perfect.

Finally, Zoe's video slideshow needed a song for all the priceless videos she put together.  I asked her to please use Andra Day's "Rise Up".  It is the song that I played at least ten times a day when Rowan was in that first coma, when he moved down to the ICU in Seattle.  I laid my phone in his bed, just above his pillow, and played it again and again, as my tears drenched his bed.  At that time, the song was me trying to encourage Rowan, to will him to rise up, to wake up out of the coma.  It worked, and after 5 days he did wake up from the coma, and we had nearly 2 more months with our boy.  For the memorial service video slide show, it had a different meaning to me though.  This time, I was hoping that it would encourage us all (myself included) to rise up every day...because that is what Rowan would want us to do.  The lyrics resonated with me so much, and I am so glad Zoe was able to make that song work for her amazing video slideshow of Rowan.  There was not a dry eye in the room.

Rowan, I know you loved the songs we picked for your service.  They warmed our hearts and souls, just like you did every single day.  I know these melodies and lyrics will remind us all of you for the rest of our lives.

I love you and I miss you Rowan...

so very much...

singing these songs daily ...


Endless Night~ (Lion King)

Where has the starlight gone?
Dark is the day
How can I find my way home?

Home is an empty dream
Lost to the night
Father, I feel so alone

You promised you'd be there
Whenever I needed you
Whenever I call your name
You're not anywhere

I'm trying to hold on
Just waiting to hear your voice
One word, just a word will do
To end this nightmare

When will the dawning break
Oh endless night
Sleepless I dream of the day

When you were by my side
Guiding my path
Father, I can't find the way

You promised you'd be there
Whenever I needed you
Whenever I call your name
You're not anywhere

I'm trying to hold on
Just waiting to hear your voice
One word, just a word will do
To end this nightmare

I know that the night must end
And that the sun will rise
And that the sun will rise

I know that the clouds must clear
And that the sun will shine
And that the sun will shine

I know that the night must end
And that the sun will rise
And that the sun will rise
I know that the clouds must clear
And that the sun will shine
And that the sun will shine
(Repeat to end)

I know
Yes, I know
The sun will rise
Yes, I know
I know
The clouds must clear

I know that the night must end
I know that the sun will rise
And I'll hear your voice deep inside

I know that the night must end
And that the clouds must clear
The sun
The sun will rise
The sun
The sun will rise

Rise Up~ Andra Day

You're broken down and tired
Of living life on a merry go round
And you can't find the fighter
But I see it in you so we gonna walk it out
And move mountains
We gonna walk it out
And move mountains

And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
And I'll rise up
High like the waves
I'll rise up
In spite of the ache
I'll rise up
And I'll do it a thousands times again
For you
For you
For you
For you

When the silence isn't quiet
And it feels like it's getting hard to breathe
And I know you feel like dying
But I promise we'll take the world to its feet
And move mountains
We'll take it to its feet
And move mountains

And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
For you
For you
For you
For you

All we need, all we need is hope
And for that we have each other
And for that we have each other
We will rise
We will rise
We'll rise, oh oh
We'll rise

I'll rise up
Rise like the day
I'll rise up
In spite of the ache
I will rise a thousands times again
And we'll rise up
Rise like the waves
We'll rise up
In spite of the ache
We'll rise up
And we'll do it a thousands times again
For you oh oh oh oh oh
For you oh oh oh oh oh
For you oh oh oh oh oh
For you

Part 6: "The Memorial Service Program"

Planning out the order of service, the speakers, the music and the artwork for Rowan's Memorial service program was another important part of this process.  I wanted it all to be perfect.  To celebrate his life, acknowledge his death, and leave everyone with a message of Hope...because that is what Rowan stood for...Hope, even in the darkest of times.  I think we did a pretty good job of accomplishing that.

First, I chose one of the most poignant photos ever taken of Rowan for the cover.  I took it as our family took a walk in a park, just a day or two before he got admitted to begin chemo for transplant number one at Seattle Children's Hospital.  We were walking through the woods, along the trails of the park when we came up to this bridge.  Rowan ran ahead of us, and skipped across the bridge like he didn't have a care in the world.  And when he reached the other side, he turned and threw his arms up in the air...victorious.  I snapped the photo, and when I looked at it on my phone right afterwards, I distinctly remember how it took my breath away.  I knew in an instant that it was going to be a timeless, important, profound picture of Rowan for the rest of our lives.  I started to cry.  I just knew in the pit of my stomach, that it either signified him beating his life long illness, getting through transplant, being completely healed...or...it was going to signify him crossing the bridge from life on Earth, into Jesus arms in Heaven.  I just knew it was that important.  I hoped for the former reason, of course, but I wasn't sure.  I was right, but it was for the latter reason.  This picture depicts Rowan crossing the bridge into Heaven.  It is beautiful.  One of the most beautiful photos I have of him.  And I knew it needed to be the cover of the program for his memorial service.  I showed Brian, and he agreed.

Ian did not feel that he would be able to speak at Rowan's service, and I definitely wanted him to feel represented, so I asked him if he could draw something for the inside of the program.  Art is one of Ian's greatest talents, especially portraits.  I gave him the freedom to choose a photo that he would like to draw of Rowan, and he and I started looking at some together.  When we came to this one, we both stopped. 

I hadn't even told Ian that I wanted "Hope" to be the overall message of the service, but still Ian chose this picture.  Again, a perfect choice.  Ian worked on this sketch for about a week, and did such a great job.  It became the inside cover of the program, and I am so happy with that choice.

The last thing to add in was the details of the service, the speakers, the songs, etc, and those details just fell into place perfectly.  I will do another post that explains the music choices, and one that talks about the speakers and what they had to say, but here are photos of the final program (for those who were not able to attend). 

You never want  to plan your child's funeral, you don't look forward to designing the program for it either.  It is a task that must be done though.  Ours was a labor of love.  Every choice, each decision, done in honor of a beautiful life...Rowan's life.

I hope you approved of your memorial service program Rowan.  Actually, I know you did.  It was as beautiful as you are.

I love you and I miss you Rowan.

I've had 33 days without you...

but you've had 33 days with Jesus...

"Rowan, show me how to do this..."

One of Rowan's favorite places to be was on stage.  He did 9 plays, and one short film.  Six of those plays were at Woodlawn Theater...Honk Jr, Aladdin Jr, Thoroughly Modern Millie Jr, Shrek Jr, Peter Pan Jr, and Hairspray Jr. He  LOVED acting, singing, dancing, and hanging out in the dance studio or backstage with his theater buddies, especially with his best theater buddy David. 

When Rowan first left for Seattle, he knew he was going to have to miss being in one play at Woodlawn, but he hoped he would at least be back in time to see his buddy David perform in it.  The play was Willy Wonka Jr and the shows were set for January.  Unfortunately, when Rowan's first transplant failed, he realized that he would be in Seattle a lot longer than expected, and would certainly miss seeing David and his other friends perform in Willy Wonka Jr.  I remember trying to cheer him up, and told him that maybe he would be back in time to see the next show though.  Rowan looked forward to that.  

You just never know what the future holds though.  Rowan passed away in Seattle on December 15th, in the middle of his second transplant.  This meant that Rowan would never be in, or see, another show at The Woodlawn Theater.  But it also meant that I would be back in Texas by the end of December...in time to see Willy Wonka Jr myself, if I wanted to. 

At first, I didn't think there was a chance I would be able to do so.  Rowan and I spent many hours and many nights at the Woodlawn Theater over the past 4 years.  I always stayed and helped work backstage, so I know the kids and the space so well.  I love the Woodlawn Theater as much as Rowan did, but to walk in there without him...sounded terrifying.  Too many memories.  Too hard to do without him.

But, God.  God, and Rowan, and Ian, gave me the strength to go see David perform in his role as "Charlie Bucket" in Willy Wonka Jr. at Woodlawn Theater tonight.

I felt a tug at my heart earlier this week, telling me that I should go to the show.  I knew how bad Rowan wanted to be there, so part of me wanted me to do it for him.  I also love David so much, and wanted to go support him as well.  I contacted David's mom and asked if it would be too much for David to see me there.  He and I had a good long hard cry at the memorial service, and I didn't want to cause him more emotional stress, or to distract him from his acting.  David's mom told me that she was actually about to text me because David had asked if I could go.  That sealed the deal.  If David wanted me to come, and I already knew that Rowan would have been there if he could, then I knew I needed to go.

 

Ian immediately said, "I'll go with you Mom", and I'm so glad he did. 

I cried most of the way there, and in the parking lot, and in the bathroom when I got there.  It was just so overwhelming, to be there without Rowan.  I got to see Chris Rodriguez, the Executive and Artistic Director who taught and directed Rowan there all these years.  It was nice to get a hug from him, but it made me cry even harder. 

Ian held my hand as we got our seats. 

David's Mom Maureen spoke just before the curtain opened, and dedicated the show to Rowan.  She talked about how much he loved being at The Woodlawn, and how it made him feel like a normal kid.  She talked about his larger than life personality on stage, and his life motto's "Love your life" and "If you can't see the good, make the good".  It was such a sweet honor.  Thank you Maureen.  Thank you Mr. Chris.  Thank you Woodlawn Theater.  For many years of great memories, not just for Rowan, but for everyone in our family as well.

The show was fantastic! David did a terrific job as Charlie Bucket, and his brother Nico did a fantastic job as Willy Wonka. 

Ian and I smiled and laughed and clapped, often.  Not something I have felt like doing much lately.  It was nice for a change.  And I knew that Rowan was there with us in spirit, cheering on his friends, enjoying the show.  (Which we were reminded of when we saw all the bubbles drifting down from the balcony during the fizzy lifting drink scene:)

After the show, I gave David a hug, orange flowers (Rowan's favorite) and a framed picture of he and Rowan...one of my all time favorites. 

Such a sweet boy.  I told him that he made me smile today, and I thanked him for that. 

David, I'm glad you wanted me to come, and I'm glad I did.  Ian thank you for coming with me. 

Rowan, I hope you enjoyed the show as much as we did.  Oh how I wish you could have been there with us in person, but thank you for being there in spirit.  When I first got in the car to drive to San Antonio today, I said out loud, "Rowan, show me how to do this.  Show me how to live without you here with me".  I feel like you gave me a glimpse today.  I feel like you showed me, that doing things that I know you would love to be doing down here yourself, will be one way for me to feel joy again.  It worked today.  And I will keep trying.

And Maureen, I love you, David, and your entire family.  And the boys did an amazing job!  You must be so proud.

Ian, thanks again, for your strength, for your love, and for your moral support.

And thank you Rowan.  I love you and I miss you.