Evelyn and Rowan

Click here to view this photo book larger

Shutterfly baby photo books are the perfect way to preserve your baby's precious moments.

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!