Evelyn and Rowan

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3 Weeks After Rowan Died

Checking in. 

It seems odd that it’s been 3 weeks since Rowan died.  In some ways it feels like it just happened, and in others it seems like he has been gone for ages.

Right now it’s like I live in two separate worlds.  “Normal life” is so incredibly different than what life with Rowan was like. Everyday we go about normal things and it seems like Rowan never existed. “Normal” things don’t remind me of him so much. I never took him grocery shopping. It was so rare that I cooked a lot when he was at home, or managed to clean the house thoroughly, or could spend time with JUST Evelyn playing games. Life before and after Rowan is so different than life with Rowan was that it sometimes seems impossible that Rowan was ever really here.

And then there are moments, where a smell, or a touching gift, or a picture, or something in the house suddenly slams reality in. Rowan was real. We loved him. Rowan died. I can’t hold him. I can’t see him. And grief seizes up, almost like a panic attack, for a short period. Sadness is just so overwhelming I find myself shaking. And it passes as quickly as it started.

It seems like the part of the journey I am working on is making these two worlds mix. I want to go about normal life never doubting that he was here. His death seeming real all the time. Grief coming and going, but not as intensely.

What helps the most? What has made me the happiest?

TALKING about him! While it seems odd to me how uncomfortable everyone seems to be with it, I LOVE talking about Rowan. I am overwhelming proud of him. He is a part of some of the best memories of my life. Who doesn’t like to talk about their kids? Yes, he died. Yes, it’s sad. But I LOVE talking about him.  When others avoid it or seem uncomfortable that I’m talking about him, it’s hard to cope with.  So this week I’m calling a grief counselor that is provided through the hospice service we used.  I get that family and friends aren’t comfortable with me talking about Rowan yet. Everyone needs time. So I’m thankful that this service is available for me.

Evelyn is doing really well.  She cries sometimes. She tells me she wishes Rowan wasn’t dead anymore. I tell her I wish that, too. We talk about Rowan’s handprint. She remembers when we made it at the hospital. She talks about Rowan’s seat in her imaginary car.  She asks me to roll down “Rowan’s window” when she wants the window on the opposite side of the car down. She likes to look at his pictures. She has fewer panic attacks every week and asks if we can go see him less and less. She misses him, like we all do, but she’s coping really well.

Doc and I had a great weekend.  We celebrated his 28th birthday with some Laser Tag and a party with several of our friends.  I won my first round of Laser Tag ever and I’m still really excited/proud of myself. Evelyn told Doc all about the remote control airplane he got for his birthday BEFORE he opened it (yay 2 year olds!). And today we went to see my grandma to celebrate her birthday.  We gave her a set of handprints (one was Rowan’s, the other Evelyn’s) to have.  I never got to take Rowan to see her, but I wanted her to have something that he had touched because she enabled us to take care of him and never worry about money, and because I know she loved him.

I hope everyone is enjoying some cooler weather. We are hanging in there. We keep stepping forward. We’re already talking about ways to honor Rowan’s memory and provide support to other kids and families battling chronic illness or disease.  He made us proud, we intend to make him proud as well.

The Words We Spoke to Say Thank You and to Celebrate the Gift We Had in Rowan

*I apologize for any misspellings or unmentioned names.  If I didn’t mention you but you took care of Rowan or provided aid to us please know that we are very much in your debt and grateful to you.  Please forgive our lapse.*

 

Doc:

Firstly, thank you for coming. I will try and make this relatively short, as my wife has more to say than I do (as usual). I just wanted to say that even when we first knew about Rowan’s heart, our understanding of best case still included three open-heart surgeries and eventually a heart transplant. So even his best case scenario would have been a bumpy trip. As you all know, we did not get best case scenario. Rowan spent a lot of time in the hospital hooked up to all manner of machines. But that’s not the important part of his life. Honestly, the best part of Rowan’s life was the 18 days prior to his death. He was not intubated, withdrawing, uncomfortable, puffy, or in shock. He was happy. He was the little boy that we had only seen moments at a time, except it was all the time. He played more in those 18 days than he had in all the 7 months before. We wish that he had gotten to play with us for longer. We miss him and we are sad about it. But we have the distinct opportunity to be able to say that we made the right decisions for our son and were able to let go of him with dignity and honor. And love. And no person on Earth gave my son more love than my wife. No other mom I know would have fought for him like she did. I have never been more proud to say that I am her husband. And I think I’ve talked enough now and will let her take over.

Me:

Thank you for gathering with us today so we can express our thanks and gratitude to those of you who have been a part of the journey we have been on for the last year. If you don’t mind, I would like to thank a few people and say some words about my son.

Rowan’s life was an incredible gift, and one we owe to many people. People in two different cities.

In St. Louis, which was Rowan’s home for half of his life, we want to thank the staff of Haven House, the families that visited at the holidays, nurses Brett who took care of him after his Norwood, Miranda who held him while she charted, Nicole who let us hold him for the first time, Elaine who packed up his gear many times, Ali who was thrown up on a lot, Dora, Tammy, Andy who took Jackson on wagon rides, Danil, Amy, Paul who brought me a tissue and visited Rowan when we were gone, Maddison, Joan, and any others I forgot to mention. Thank you Dr. Eghtesady for the gift of bringing Rowan home, thank you to Dr. Boston, Dr. Gazit who is truly one of the kindest men I’ve met, Dr. Oren who tried to fulfill my dream of having a child who was a lefty, Dr. Duncan for offering her aid during Rowan’s last days, Dr. Doctor for skipping his ‘intro to the lymph system’ speech and for having a name that provided a since of irony when we were desperate for humor. Thank you Dr. Ambrose, who knew Rowan very well and even asked to see Rowan’s ridiculous bunny picture. Thank you also to the many fellows, especially Reinis who flew with Rowan to St. Louis and called Rowan “Inspector Fowler”. Thank you Katie the social worker, Becky with child life, the nurses and techs of 7W. RT’s Tracy, Jessica, Nikki, and Shelly. Shannon with CT Surgery and PA Amanda. Thank you to the other heart families who shared parts of their journey with us. Thank you Noa. Thank you Becky Ortyl, for showing me how to be beautiful during times of uncertainty.

In Tulsa, we want to thank Doctors Kimberling, Kleiwer, Lundt, Walter, Nikaidoh, Barth, Campbell, See, as well as Binh, Bridget, and all of the other doctors who took care of Rowan in Tulsa. Dr. Sarah Hall who has been a true friend to our family. Sarah, I have not yet killed the bush you gave us. Be proud. Thank you Louisa for helping me take Rowan and Evelyn on their only zoo adventure. The people from Child Life who did Evelyn and Rowan’s handprints. Thank you. All of the wonderful families of Mended Little Hearts. Thank you Becki for playdates, Amy and Meredith for making our wish come true, Susan for always listening to my vents and encouraging me to follow my instincts and fight the good fight. Thank you to my dear old friends who came to be with me today and supported me constantly throughout this journey, no matter what distance parted us.

Thank you to Anaka, Rowan’s home nurse who went beyond being a nurse. Who visited him in the hospital, and loved him.

Thank you Dr. Cotton, for telling Matt to do what he needed to and that we’d deal with it later.

Thank you Camille who came anytime I hinted that I needed anything.

Thank you Marcella and Mary Ann, who only knew him at the end, but guided our family as we said goodbye.

Thank you for the meals, the cups of coffee, the sodas, the visits, the playdates, the lawn mowing. Brenda Wilson, if you ever need another job you can do my laundry and clean my house anytime.

Michelle Sumner, I will never have a better boss. Ever. I hope you know that you took any moment I might have been stressed about work and snuffed them out.

Thank you to everyone who followed our story and held us in your hearts.

Thank you to all of the ladies at Jenks West Intermediate who donated their sick leave so I could be with my son.

Thank you to my parents for loving Evelyn while we were away. Thank you for giving her a beautiful Christmas. Thank you for helping in the ways you could.

Thank you to my Grandma who made sure that finances were never once a concern. You let us focus on being Rowan’s parents. Your generosity allowed us to be with him through it all and for that we are forever grateful.

Thank you to the rest of our family. We know your thoughts were always with us.

Thank you to Gary and Kathy for sitting with us during Rowan’s surgery.

Thank you to my daughter, for being the best big sister. Thank you for talking to Rowan and smiling and playing with him. You lit up your brother’s world.

Thank you to my husband. Never did we dream that we would face such hard challenges when we promised each other that we would never stop fighting our way through life together. Be we have kept our promise. Your quiet and unyielding strength have been my saving grace for the last year. Even when there were no words you held my hand.

Rowan had a smile that lit up the room. He smiled with his eyes, Tyra Banks would be proud. Rowan was a young man who was full of spunk and joy. There wasn’t a time we took him to the hospital that he didn’t smile at the staff in the ER.

He loved snuggling with soft blankets and the color red. He liked sugar water. He loved bluegrass and Bruno Mars.

Rowan loved his big sister more than anything. He watched her, tried to see her play, and smiled every time she came to see him. And she did. She would get up in the middle of the night to go check on Rowan. Evelyn loved him. She always told him goodnight and blew him a kiss. Evelyn never saw wires or tubes…just Rowan.

And with Evelyn, Rowan was able to do so many things in life.

He went to the zoo. He went to the aquarium. He flew in a plane and rode in a car. He rode in his stroller on walks, drove in an imaginary car, made crafts, played peek-a-boo, wiggled his way into our hearts, and stamped his giant paw on the hearts of many who never even met him.

Rowan inspired. Rowan taught us how to love.

If ever there is one thing I will be sure of, it’s that I loved Rowan, and I know that Rowan loved me too. He completed our little family. He was broken and beautiful.

When we finally listened to Rowan, and decided to redirect his medical care towards comfort – we were given a phenomenal gift. We had several days of happy Rowan. Pain free Rowan. A little boy who played, and cuddled, and gave us plenty of time to say goodbye. Our last days are filled with joy and memories.

We have pictures, and art, and memories. We took him camping in our living room, we showed him the places we’d marked with his memories in our home, we promised to keep him in our hearts forever.

After Rowan had been home for a few days, I realized that it seemed as if I should say some parting words to Rowan, have some big “mom to son” talk. Then it occurred to me that there was nothing unsaid. We told Rowan we loved him every day. We told him we were proud of him. We told him that we were thankful for the gift of him. Because that is all he was. A gift.

We won’t remember Rowan as a sad story. Nor a tragic one. All we will remember is this beautiful little boy who chose us. This boy who taught us how to live without unspoken words, without regret, without fear. Rowan gave us a gift no other boy could have. Know that while we are sad we cannot hold Rowan anymore or see his smile, we are at peace. Rowan is free from the body that limited him here with us. We are free to live life as he taught us to.

He is joined now with Christopher, Giselle, the little girl who passed Christmas Eve, and Mighty Mighty Oakes. He is with my grandma and my grandpa, and Matt’s grandma, who also knew the pain of saying goodbye to a son. Sweet Rowan, we will carry you in our hearts and minds, and when we think of you, and the longing to see you pulls at our souls, we will light a candle for you, to send our thoughts your way.

I’m glad Rowan is safe and at peace. Thank you to all of you for supporting us and allowing us to enjoy the gift that he was. And Rowan, thank you. Thank you for picking us. Thank you for loving us. Thank you for being the best thing that ever happened to our family.

Rowan’s Life in Slideshow Format

We wanted to share our pictures of Rowan’s journey with everyone at his celebration/thank you party (more on that in a later post). We decided to make a video slide show with some songs that had meant a lot to us during Rowan’s short life.

Hind sight…should have used different software.

BUT

We made it.

Doc and I both spoke last Friday night at our party, then we toasted our son and showed this slideshow.

RowanElyas

 

We wanted to end on a joyful, beautiful, and prideful note.  We are so overwhelmingly proud of Rowan and the reach his life had. All of those candles are proof that his life had impact. It had meaning.

Vaguish directions to our house that will totally get you there: Ok, our house is located inside Copperleaf, an edition at 131st and Sheridan. It is a small oval shapped neighborhood. There will be a bunch of red balloons outside our house. There! Now I don't have to post my address on a public forum! Hahah! In all seriousness, I am really looking forward to celebrating this evening. I woke up to light rain and a beautiful rainbow. Perfect way to get set to celebrate!

Thank You Party and Celebration

 

After lots of discussion I think we have finally decided on a plan for celebrating our son.

One of the things that has stuck with us throughout Rowan’s life is how much everyone’s help allowed us to truly spend time with him and focus on our family.

So what we would like to do, is throw a party to say thank you. If you brought a meal, contributed to a gift card, sat with Rowan, visited us, made something, sent us something in the mail, came up to the hospital, brought drinks, or took pictures, or ANYTHING to help us throughout the last year, we would love for you to join us.

On Friday, from 6-9pm we will be opening our home up.  We are going to have snack foods and drinks available and we would love to just visit with all of you and express our gratitude. 

We will also be showing some of our favorite pictures of our little man and remembering his amazing life. We will be speaking at 6:30 and at 8:00 and we will be toasting our little hero as well.

Several of you have asked about how you can donate in Rowan’s honor.  If you would like to make donations, there will be boxes available at our home for the Might Oakes Heart Foundation (supporting families of children with CHD at St. Louis Children’s), the Cystic Fibrosis Foundation, and Mended Little Hearts of Tulsa.

For those of you unable to attend, we will be posting a video of our thanks and the slideshow afterwards.

I will post directions to our house (which is near 131st and Sheridan) on the day of so that I can remove the post afterward.

We hope to see you there so we can express our thanks!

*Please don’t wear black! We are celebrating Rowan and thanking you! Wear something colorful and COOL because it’s HOT outside.

Hope to see you there!

Making Arrangements

Houy!

Ok, so this is hard to talk about and I assume it will be really hard for most to read.  When Rowan died, he left behind his body, and his body needs to be retired. Most people don’t talk about it, but I felt like I wanted to share how we have managed making final arrangements for Rowan’s with everyone who is reading, largely because we learned some things and some unexpected things happened and I wanted to help other parents. Doc and I are fortunate to have all of our parents living, so we had never had to make final arrangements for someone before.

First off, when Rowan was on hospice, we knew we would need to make arrangements, so our hospice social worker started asking around and trying to find a funeral home. We were really grateful to have someone available to help us know what to do. Floral Haven is a funeral home in Tulsa that will cremate children for free.  Some funeral homes do and some do not.  They waived all fees for us, which was a kindness as cremation and burial fees are expensive. We also talked to a nurse who lost a daughter to SIDS and she used Floral Haven and had glowing recommendations.  So we had a service provider…we had to determine what services we needed.

Burial vs. Cremation? Doc and I knew cremation was what we believed in for us long before we even conceived Rowan.  We decided we would have him cremated.  We intend to scatter his ashes – half in Tulsa and half in St. Louis. The funeral home will provide us with a temporary urn to hold them until we can scatter them. So we knew what we wanted and who would do it. This was helpful because when Rowan died, we didn’t have to pick a funeral service to have someone collect his body.

When Rowan died, we called the hospice service.  They sent their nurse out to do a formal assessment and document his death.  The poor nurse who came out doesn’t normally see pediatric patients and needed to step out to give herself a moment after seeing our little man.  She was very professional and kind about it.  She then called the service that would come get Rowan’s body.

It took what seemed like FOREVER for them to come get him.  When the man walked in, he laid out a think plastic blanket on our bed so we could lay Rowan’s body on it.  Doc picked Rowan’s body up and laid him down on the sheet. The man swaddled Rowan’s body up and then covered his face with his blanket.  I panicked when he covered Rowan’s face. I didn’t expect that. The thought of him in the dark suddenly just panicked me.  I knew Rowan was gone and that what was left was really just his shell, but as a mother, I had that moment of fear and horror.  I just kept reminding myself that it wasn’t him. Rowan was safe and peaceful and free.  The man carried Rowan’s body out of our house.

I realized later that it was silly for me to worry about Rowan’s face being covered.  He freaking LOVED covering his face! We joked about his “wolf cave” that he put himself in all the time.  He loved having fabric touch his cheeks and loved dim lighting.  I think it was just part of dealing with the weirdness of seeing someone who is alive…and then not.  It’s hard to wrap your head around it.

So even though we knew we were going to cremate Rowan’s body, we also knew that we wanted to help kids like him if at all possible. Rowan’s body was taken to a facility to have an autopsy done.  Autopsy helps the medical world learn a tremendous amount about the body.  We believe that Rowan was a gift, and his final gift was to offer his body to the medical world as a means of learning.  We know something was going on with Rowan that we couldn’t fix. An autopsy may give some answers.  An autopsy may provide insight to what CF and CHD together can do. It may help another child. I think Rowan would have wanted that.

His autopsy was performed Sunday night and then Rowan’s body was taken to Floral Haven.

Today we went to Floral Haven for the first time.  The man we met with was so kind. He told us how cute Rowan was and even asked us some questions about his life. He wanted the blog web address so he could see pictures of Rowan and read about the amazing things he did in his life. 

He also gave us a teddy bear that matched the teddy bear the funeral home had given Rowan’s body to hold.  When I saw the bear I started sobbing. It was really a sweet cute soft thing. It even looked a little like Rowan.

What caused the sobbing was this.  I wanted to see Rowan again. Doc and I talked about it on the way to the funeral home…whether or not we wanted to view him.  And this was what I realized. I wanted to see HIM. I wanted to see Rowan and see him smile or see him sleeping peacefully.  That wasn’t what I’d see. I would see Rowan’s shell. Not him, just his body…the cruel sick body he was free of.

Now I had this image of Rowan (real alive Rowan) holding a little teddy bear like he held his wolf.  And that image was so cruel and mean. So sad because it wasn’t real. My son is gone. My son isn’t holding that bear. And that’s sad.

We put the bear in the car as we left the funeral home. When we picked up Evelyn, she found the bear in the car. She loves it.

Now I think of that little bear Rowan’s body is holding like the blue string around his wrist…just a connection to his sister. A small symbol of what he was and is to her. Something they both have.

In the last day, Doc and I have gone through most of Rowan’s things. We celebrated as we went through and disposed of his medical dresser. He had a WHOLE DRESSER of medical supplies. And know what? He doesn’t need it anymore!!!

We took apart his crib and stored it. Returned some baby equipment we’d borrowed and packed things to donate, so someone else can love the things he loved and poured his strength in to.

We have had Evelyn help us. We’ve talked about the things Rowan doesn’t need anymore.  We gave her some of Rowan’s favorite toys to remember him by.

Since Rowan went on hospice, Evelyn ditched her blanket.  She instead, used one of Rowan’s blankets.  She now has Rowan’s Mickey Mouse who is always with Evelyn’s Minnie Mouse doing the “hot dog dance”.  We offered her Rowan’s stuffed wolf, who is in many pictures of him.  She saw us trying to give it to her and started sobbing. “NO! That’s Rowan’s wolf! That’s Rowan’s baby dog!” and couldn’t take it. We have it for when she is ready. She knows how special it was.

Last night, I put Evelyn in bed and she was settling in when she suddenly shot up. “Oh no, Mom! I forgot to say goodnight to Rowan!” She ran out of bed and threw open Rowan’s door. I sat by her bed with tears suddenly streaming down my face, not sure what to do.  I heard her small voice.

“Oh. Rowan’s not here. Rowan’s gone. I cannot say goodnight to him.”

She walked back to bed, snuggled in his blanket, and said, “Mom, Rowan is gone. He’s okay.” I nodded, and shortly after she went to sleep. THANK GOODNESS she figured it out for herself. I mean, honestly, what the hell do you do when a kid springs that on you?! I just told her that I missed Rowan too, and that when I miss him and want to say things to him, I just say them to the stars and hope he hears.  I think Mufasa may have said something similar in the Lion King…..

We have been talking about ways to properly honor Rowan.  We are trying to find a location and determine availability, but once we have a time and place, we will let you know.

Thank you for your posts, comments, texts, calls, etc. Thank you for those of you who have celebrated his life! Thank you for loving on us and lending us your words of encouragement.