Keeping Our Promise

I haven’t updated in a while. Part of me is reluctant to post anything else here, as to me, this was a place to put Rowan’s story. In many ways, his story is over. His legacy and memory may not be, but his life is.

Wednesday, we went to the Schlotzsky’s at 71st and Lewis. They were donating 20% of the receipts from dinner to CHAMP Camp, a camp for children with CHD. We walked in with our daughter, ordered, and walked right over to put our receipt in.

We were intercepted by a Child Life Specialist from St. Francis that I recognized, as well as an employee from Schlotzsky’s who offered to explain what they were doing and what CHAMP Camp was. I smiled and said, “Our son actually died from a heart defect. We came tonight to support CHAMP camp.” The child life specialist noticed my daughter dancing in the booth waiting for her cheese pizza and commented on how much she’d grown.

And it made me step back for a second.

10 months. It’s been 10 months.

And if you were sitting in Schlotzsky’s and saw our family come in, you would have thought we were a happy family with a very lively daughter. You wouldn’t have thought there was a cloud following us or that we were suffering. Because we are a happy little family. We love being together and we have fun. We enjoy life.

And there were so many times in the last ten months that I didn’t believe we’d ever be that again.

But we are living the way we learned to live with our son. We enjoy each other. We treasure the time we spend. We smile. We laugh.

And we remember our time with Rowan warmly. We talk about the fun games we played. We talk about how silly he was. We look at pictures and hand prints and sing Rowan’s lullaby when we’re tired.

We didn’t get here alone. We had a wonderful therapist. My parents really helped Doc and I by always watching our daughter when we needed to take care of ourselves and our marriage. I have some incredible friends who have supported me and listened when I needed clarity and kindness. We put one foot in front of the other, but there were lots of people cheering us on.

I love my son. I miss my son. But we’re going to be ok. I promised him that. When he was dying, I told him it was okay for him to go. I told him we would be sad, but we would be ok. And I kept that promise.

We finally received Rowan’s autopsy report yesterday. From what we can tell, there is nothing revolutionary or revealing. We are going to try to find a pathologist who can interpret some of it for us, but I think no more answers are out there. But that was it, the last housekeeping thing. We’ve tied up all the unfinished business now.

For those of you in the Tulsa area, the Schlotzsky’s at 71st and Lewis is going to try to do another fundraiser on Wednesday, June 5th from 5-9pm. We will be there. I’d hope to see you too. I’m ready to get back out there and support heart families and the CF community. I hope to see familiar faces.

Making Hospice a Gift

My son has been dead for about 6 months. If there is one thing that I can say we really did right with him, it was hospice. I have no regrets about anything we did while he was on hospice and I really feel like it was the best three weeks of his life. While we went through saying goodbye to our infant son, I think a lot of the things we did could be done with any small children who are saying goodbye to someone. I think a lot of these things could be done with elderly family and friends as well.
Do handprints.

When Rowan went on hospice this was one of the only things that anyone suggested or gave me advice about. Handprints. We did an impression of Rowan’s hand in clay and then several with paint. The Child Life Specialist at the hospital helped us organize this. Have someone take pictures of you doing the hand prints. We had our daughter (who was 2 at the time) do her handprints on one side of the paper and then “help” us do Rowan’s handprints on the other side. For me, its proof that they were together at the same time. It’s proof that their lives were intertwined. I had several handprints done and then framed one for us, one for each set of grandparents, and one for Rowan’s only great-grandparent. They made wonderful gifts to give at the holidays. It was something touching and a way to make sure that even if no one talked about our son, some piece of him was present for the holidays.This is true for great grandma’s and grandpa’s. They could have a hand print with the baby/child’s. What an amazing way for them to know they made a memory with a child who might not remember them otherwise.
We also did Piggies and Paws. This was our “wish” and we have a beautiful display of each member of our families hand or foot print making a little fairy tale scene. There is a knight (our son), a dragon (our daughter), a castle and an enchanted forest. It’s easier to have these up than pictures. You can’t really have too many hand/foot prints.
Again, take pictures! It doesn’t matter if the person who is dying looks horrible. Take them. You will want them. Saying goodbye is a big part of your story. Have someone around to take pictures so everyone is in them.

Read books about death and love.

We had a daughter who was going through saying goodbye too. We never lied to her. We always told her what was going on in words she could understand. Sometimes, books helped. For a child her age, the important thing was for her to understand that Rowan wasn’t ever going to be able to play with her or see her once he was dead. Even though we wouldn’t see him anymore, it didn’t mean that we wouldn’t love him anymore.
The Invisible String by Patrice Karst is a fantastic book that helps describe the fact that we can feel love towards others and be connected even if we aren’t with them. It was a great starting point. We read it several times.

I went further since the book isn’t really about death. I used actual string to tie little bracelets around Rowan and Evelyn’s wrist and then cut the string after the book was over. Rowan died wearing his bracelet. He left with it. It was just a small symbol of how we are still connected to him.
There are other books like The Next Place by Warren Hanson.

Those were our two big ones. Most hospice services should have social workers available and they should be able to recommend books that would be appropriate for your situation or your children’s age.
AGAIN, take pictures! Take pictures of you reading books together. Lots and lots of them.

Continue to live in ways that you can.

This involves the person on hospice. Rowan was fine for several days. He had med schedules and it was too hot for him to be outside, but those were our only limiting factors.
We built a pretend car and everyone played in it. We watched movies. We had a pretend “campout” in the living room. We danced to fun music. Rowan tired out easily, but he still had fun. Some of the best memories we had as a family happened when we all played together.
AND we took lots of pictures of our kids together. I’ll get to the why of the pictures at the end…

Have photos taken of you as a family.

If you are in the Tulsa area, I have a photographer who considers photographing special needs children and their families her specialty.Amy is the person to talk to. You can almost always find someone who isn’t afraid of the fact that your child or loved one is dying and is happy to accommodate you anywhere…be it the hospital, a bedroom, a living room, wherever. Take pictures together. While “saying goodbye” and doing these things hurts, it was important for us to do it.

Start some sort of therapy.

Our social worker from hospice made a giant difference in our experience. It was a long three weeks. We went through tons of emotions while still trying to push the bad ones away so we could enjoy Rowan while he was still with us, but we definitely needed an hour of “holy hell my son is dying!” and sobbing to a sympathetic and encouraging ear…several times a week. It kept my husband and I talking to each other and it kept us from being too overwhelmed at any given point.

Make a wish.

All those people saying they’d do anything for you. Ask them for it. Even if it’s stupid. Even if it’s a major inconvenience in your opinion. Ask and let people help you.
There are two major things I asked for.
#1.) The Piggies and Paws prints. I wanted “art” versions of handprints. I’m so glad I asked for this. They can be rather expensive but Mended Little Hearts of Tulsa took care of making it happen…that day. I’m so happy I have those.
#2.) This is the one that may sound “stupid” that I made. Rowan started to sleep a lot more. The hospice nurse came out and said we had what was likely 24 hours left with him. I picked him up and basically refused to set him down. When a dear friend who had also lost a son texted to ask what they could do, I told her that I planned on holding my son indefinitely and a massage to relieve the back cramping that was sure to follow would be wonderful. She booked and paid for one a few days after my son passed. It felt amazing and I needed it, especially after all the sobbing and retching. I’m still glad I did.
Ask for meals, ask for baby sitters, ask for movies you want to watch with your loved one, ask for art supplies, ask for whatever you need.

Prepare others.

It really helped us to prewrite a note telling people what would be helpful for us. We wrote this in the week leading to our son’s death and posted it when we announced that he was gone. It helped guide our friends and family and spared us a lot of hurt from people who were just trying to help.
 

When it’s over….
Use your pictures. Make a photobook. Scrapbook if you’re into it. Use Shutterfly or some other source if you’re not. Write the story of your children and their lost one. Use plain language. Read it to them when they ask questions. It’s always a great starting point. It’ll help you to say the words.
Here is ours.

Evelyn and Rowan: The story of a Brother and a Sister

I hope this helps someone out there. I hope. Someone who is told there is nothing else to do and they have to watch their loved one die over a period of time…a few days, a few hours, a few weeks, I hope this helps you. I hope it gives you ideas. I hope you make the most of it and have no regrets from that time.

Goal Reached!

Goal reached! $1000 in gift cards to St. Louis!!!!

So proud to have my son’s memory inspire this amount of giving.

Thank you again to everyone who has contributed! It warms our hearts.

AMAZING!

I just wanted to let everyone know that we mailed over $800 in gift cards to St. Louis.  That is incredible!!!  I am so proud and thankful that we were able to come together to do something that is so important for families in St. Louis this holiday season!

Thank you to all who gave us cards to send, all who sent cards on their own, and any who will be sending them in the future.

Anytime something good comes out of our son’s existence it makes the pride we feel in him grow and the heartache dim.

Thank you.

Truly.

Piggies and Paws

 

When Rowan was on Hospice, I told you guys about the amazing gift we received from Mended Little Hearts of Tulsa. They wanted to grant us a wish for Rowan since he wasn’t old enough for the Make a Wish Foundation. We ended up asking to have a Piggies and Paws artist come do beautiful hand/footprint art for us so that we would have beautiful images of Rowan’s hand and footprints as well as the rest of our families in our home to celebrate his life. We love that we can show them to Evelyn and that she remembers making them.

Doc and I were talking a lot about ways to raise gift cards. And something popped into my mind. What if we did a Piggies and Paws party! I contacted the artist who amazingly came out on short notice to do the artwork for our family. We worked on some scheduling issues and agreed on a date.

On Nov. 13th from 6-8pm we are having a Piggies and Paws party! I’m asking that everyone who comes brings a gift card for “Admission” that we can donate to families this holiday who have children in the hospital and are away from their homes.

The artwork can be rushed to have it ready in time for Christmas if anyone wants to do these for grandparents (it makes a great gift). The actual artwork ranges in price, from $25 and up. Most of them are around $30 or so.

I do need to know if people are planning on coming so the artist can bring an appropriate amount of supplies.

There will be snacks and such provided as well as toys/activities set up in a different room for children when they aren’t doing their prints.

I hope to see you there!

(You can comment if you are coming, text me, email me, etc.)

I Sent a Gift Card!

If you sent a gift card to:

Attn: Karen Rieker

St. Louis Children’s Hospital Foundation

1 Children’s Place

St. Louis, Missouri 63110

AND

You included a letter stating that you were donating to the families on the Cardiac floors who would be away from home and with their children over the holidays in memory of Rowan Fowler (and you put your name and address on the letter)

OR

You gave us a card to send for you with above mentioned letter….

PLEASE

Comment on this post with the amount (feel free to do so anonymously) so that we can track our progress towards our goal of raising $3,000 in gift cards for families in the same situation we found ourselves in last year!

THANK YOU SO VERY MUCH!

A Way to Help

I know it’s still September, but the holidays truly are just around the corner. I know many families plan financially for gift giving and spending that comes around that time of year.

During the holidays last year, we were given a phenomenal gift in our son, and we were overwhelmed by the amount of love and kindness that was shown to us by friends, co-workers, family, and even strangers.

Last holiday season we were separated from our daughter. We left for St. Louis and we had to leave her. It was heart wrenching to know that we were apart for our big family holiday. She spent Christmas at my parent’s house without us. We spent it by our son’s bedside waiting to see if we’d even get to hold him in his lifetime. It sucked. We were worried a little about money because we had to pay to stay in St. Louis while paying for our mortgage, we had to pay for all of our meals at the hospital, and it was really hard to make ourselves leave.

Something that really helped us was receiving gift cards. Being able to leave the hospital for a little bit to recharge and eat somewhere or being able to go to Wal-Mart to buy toiletries since we hadn’t packed enough for three and a half months when we left town…those things mattered. So. Much.

Every time the social worker came by after we’d had bad news, the little Panera card and thought of warm soup some stranger had bought for us made me feel that little flicker of hope, or at least like we could hold out a little longer. Knowing some stranger or some friend was invested in us and wanted to help in whatever way they could kept us from ever feeling completely alone. I want to be able to do that for other families.

This year, as a family, we are collecting and donating gift cards to send to St. Louis Children’s Hospital. We are going to ask that the cards we send be given to families in the Cardiac Units, preferably ones who are out of town.

Friends and family who had thought to send gifts to us, we are asking that you instead send your gifts in the form of gift cards or cash donations to the St Louis Children’s Hospital Foundation. You can view the foundation’s website here.

For Gift Cards, we recommend:

• Panera
• Subway
• Einstein’s Bagels
• Sonic
• Wal-Mart
• Applebee’s
• Target
• Jimmy Johns

With any donation you send (either to us or directly to the hospital) please include a letter stating these things.

• You are donating in memory of Rowan Fowler
• You’d like the money or cards to preferentially benefit families of children who are in the Cardiac units who are away from their families especially during the holidays.
• Your name and address (to allow them to send you a tax receipt should you need one)

If you would like to send your personal gift to the families with heart children in the hospital this holiday season to us, you certainly may. We will be collecting them all through October to send out to St. Louis in early November.

However, you can send the cards directly to the address below:

 

Attn: Karen Rieker

St. Louis Children’s Hospital Foundation

1 Children’s Place

St. Louis, Missouri 63110

 

Please spread the word if you can. I grieve for my son. I grieve that he isn’t a healthy little boy that is here playing with his big sister.  But I pour my grief into helping others. I am so proud of the positive influence my son had on my life. I am proud of the good he brought out in others and the way that people came together. I don’t want the good that he brought out to be undone. I remember my son by helping others. It means a lot to me when others remember him that way too.

Off to St. Louis

Last weekend we took our first family vacation in a very long time.  We decided it was time to go back to St. Louis. We had a great time. We stayed downtown.
Evelyn LOVED sleeping in the “Little Mermaid Princess Bed” which is the best way to describe how fluffy the beds were.
We had perfect weather. We went to the zoo in Forest Park. On the way we drove past St. Louis Children’s Hospital. It was Rowan’s home for nearly half of his life. Evelyn recognized the building and immediately said “I think there are babies in there! Like Baby Rowan!” Doc had a wonderful conversation with her in the car. She talked about how she wanted Rowan to be her friend and get big like her. She said he was her best friend. We talked about how nice it would have been if Rowan could be big like her and how much we all wanted that. Halfway through the conversation I started crying – and Doc kept it going. He did such a beautiful job talking through the thoughts and feelings seeing the hospital brought up in all of us.
By the time we made it to the zoo, we were ready to have a beautiful day. The zoo is fantastic. They habitats in STL put the ones in Tulsa and Oklahoma City to shame. It was a lot of walking, but we had a fantastic time.
We went on to spend some time at the arch and the Westward Expansion Museum. When we got up to the arch, Doc pointed to the top and asked Evelyn if she’d like to go up there. Evelyn gave him a shocked look and said, “NOO!” as if she was saying, “Who in their right mind would ever want to do something so stupid!?!?” – So we didn’t ride to the top, but we walked around, enjoyed taffy on the steps, and then went on a carriage ride along the river. This was Evelyn’s favorite part on the trip. She felt like a princess.
We walked around downtown and ate dinner with some of our good friends who live in St. Louis. It was a cool place at a statuary garden. Then we walked back (past lots of princess horses). The next morning we ate at the hotel restaurant and my amazing daughter actually asked the waitress to bring her “chocolate milk in a coffee cup” for her drink. The waitress not only did that, but put whipped cream on top. She was in “fancy” heaven.
We had a wonderful time together. It reminded us how much we love St. Louis and how much we might want to live there one day. It was nice to be back.
We are doing really well overall.  Everyone has moments. Sometimes we struggle with the way people are acting around us. We struggle with things other people say or what it seems people expect of us. Little things happen that remind us of Rowan.
I saw a pack of wolves at the OKC zoo a while ago. Every movement, every step towards us, the looks at one another, how quietly they moved…they just reminded me of him.

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.

Rowan’s Last Day With Us

Rowan was always very awake and alert in the mornings. Yesterday morning Rowan didn’t really “wake up”.  He sort of moved around a tiny bit but didn’t open his eyes. Evelyn, Doc, and I ate breakfast together and Evelyn asked if she could go to her grandma’s house to play.  We told her that was fine and soon shipped her and her backpack off to Grandma’s House.

Early afternoon, I decided that I was going to hold Rowan and sing to him for a while.  We had spent some time catching up on laundry and cleaning the house with Rowan sleeping in the room with us.

When I went to pick him up, I realized that he was very limp.  He did not stir at all.  He was still breathing, but was comatose. 

Tears came as I realized that he was finally at the end state.  He wasn’t going to smile again or wake up or look at me or pull my hair.  We’d passed all of that.

I brought the candles into his room and Doc and I switched off holding him and talking to him.  Telling him stories, singing him songs, anything to let him hear our voice and know that he was not alone. 

We decided to call my Mom and ask her to keep Evelyn.  We didn’t think that seeing him in the state he was would make sense to her. We also thought that Rowan may have gotten worse because he wanted to die without Evelyn here to spare her the confusion of watching the event of death.

As it grew dark outside, I brought our candles and Rowan in to our bedroom.  I sat holding him, scratching his head softly like he always liked and holding his hand.  I had a text conversation with Becky (Oakes’ mom) and she brought up that maybe Rowan knew he needed to go but there was a part of him that was just very sad and heartbroken that he had to.

I realized that in all my conversations with Rowan about how he would be okay and we would be okay and it was okay for him to go, I never told him that he had to.  So I talked to Rowan and it went something close to this:

“Rowan, sweetheart. You can’t stay. I know it’s not fair. We want you to be able to stay and I know you want to stay too, but sometimes we cannot have what we want.  Just because we don’t like that your body cannot get better and you cannot wake up again doesn’t make it any less true.  We cannot change the truth. It is time for you to go. We can cuddle a little longer, but you have to go sweetheart. You will be safe. Wherever you are going you will be at peace and surrounded by our love. 

Do you see your blue string? Mommy and Daddy have an invisible one.  We will send you our love all the time. And we will stay with you. You have to do this. We can’t do it for you, but you won’t be alone.”

I held him for a few hours and as it was getting later and later, Doc and I decided we should try to go to bed. I told Rowan that I was going to make him a bed and we would be here in the room with him.  I brought in the pack and play and set it up.  I made him a bed out of his favorite blankets.  I laid him down in his blue and green (our family colors) outfit and covered him with his monkey blanket…and as I did, I noticed his pauses in breathing were growing longer.  I held one hand and Doc joined me, holding the other.

Doc placed his hand on Rowan’s chest.  His heart beat was slowing down.  He was only taking soft breaths three or four times a minute. We told him we loved him. We told him it was okay. We told him we were here and we were proud.  Then slowly, his heart rate slowed, until it no longer beat.

When his heart stopped, I could feel that he was gone as I was holding his hand. Doc and I said goodbye for the last time.

I was scared to see someone die for the first time. I was afraid I would be scared and not brave for Rowan.  The truth was that it was bizarre, to see his chest rise and fall so peacefully and for it to stop. I watched him thinking he looked as if any moment he’d breath again. As his end had approached, I realized that Rowan no longer looked like a baby. He looked like a person. He looked wise.  He was beautiful.

My son came naked by night, alone and very hungry; yet he was not afraid.

My son left clothed in his family colors, watched over by his mother and father, not hungry, not hurting; and he was not afraid.

I can feel that he is with others. Our bond feels different now, but I still feel that he can sense me and that I can hear him in my heart.

Rowan’s light is no longer in his body.  It’s held in the thousands of hearts that hold him dear.

And it SHINES

What to Say or Do…

Rowan’s light left his body early this morning at around 12:30. I will be posting about his last day of life and how incredibly “Rowan” it was later.

We are still deciding how to best gather and reflect and celebrate our beautiful gift, but details will be posted here and on Facebook and through mass text once we have any.

In the meantime,

I know that when things this big happen in life, people are often at a loss.  They don’t know what to say or what to do.

Let me first assure you, that if you say the wrong thing, we will just laugh about it later(probably when you aren’t around). We know you are trying to help and have good intentions. You aren’t going to make us hate you. Just talk to us. Tell us the truth and try to avoid clichés if at all possible (though we understand sometimes they just come out).

Bear in mind, we have had the last year to grieve.  We have travelled this road for a while and managed to come to a place of peace that we realize many might not be at yet. We know that many of our friends and family are experiencing emotions we felt very early on.  We understand sadness or difficulty understanding how this happened. However, we may not be the best people to discuss that with right now.

As far as what to do, here are some things we thought we could mention:

DO donate money to the Cystic Fibrosis Foundation, Mighty Oakes Heart Foundation, Mended Little Hearts of Tulsa, or any other organization that supports parents or children like Rowan instead of sending flowers.  (See blog post for link).

DO talk to us about normal things. News, movies, stupid internet videos, etc.

DO invite us out.  We’ve been “in” for a long time. I promise that if we don’t feel like we can handle being “out” we will gratefully decline, but please keep inviting us.

DO talk about Rowan. He was real. We think about him all the time.  We don’t have to avoid him. It is really okay to talk about.

DO smile, laugh, tell jokes, and be yourself around us.

DO give us the grace of forgiveness if we aren’t “ourselves” for a while.  We are rusty at being “normal” but we’ll get back there.

DO keep the texts coming.  Let us know when you are thinking about us. It is nice to know, even if we don’t get a chance to respond.

DO let us know if our story has changed you.  Things like “Because of Rowan, I now…” are wonderful things to share with us.  We love knowing that he reached and changed people. We know how special he is, and love hearing about it. BETTER YET! Write it down! Give us something to read when we miss him to remind us that he lives on in not just our hearts, but in yours as well.

 

And because people are so worried about saying or doing “the wrong thing” here are a few things that we know will not be helpful for us.

DON’T tell us how sorry you are for us.  We aren’t sorry for us. We truly feel joyful that we had a wonderful 7 months with our son. We aren’t sorry that we had our beautiful son in our lives. It’s okay to be sad that he is gone, but not sorry that we had him.  It’s a fine line, but one that for us shows a great deal of respect towards our son.

DON’T talk without listening. Many people have tried to tell us not to be afraid or not to be angry or tried to assure us that their faith is the right one and if we trusted it we’d find peace.  We aren’t afraid. We aren’t angry. We are very much at peace. Many have assumed that we hold the same beliefs they do which is awkward and uncomfortable for us. Make sure that if you are attempting to comfort us, you aren’t truly comforting yourself. And to be honest, the best thing you can do is listen.

DON’T tell us (or others) how we feel or how we must feel. We all experience death differently, so it is much kinder that you ask us and take our lead. Doc is experiencing this differently than I am.  So no one has truly been in our shoes even if they have experienced something similar.

DON’T tell our story as a sad one to others.  Please. We don’t see this as a tragedy. We see this story as a beautiful gift. We see Rowan as beautiful and wonderful and the best thing that has happened to us. That is how we want his story told and remembered.

And then the standard things that you should never tell anyone when a loved one has died:

1.) God has a plan

2.) I know how you feel

3.) You guys need to get out of town for a while OR You guys need to take some time to grieve OR You should go back to work soon OR You should do this OR that.  (However, when we tell you what we plan on doing you may absolutely nod, encourage, pat us on the back, or tell us that you think it’s a wonderful idea…even if you don’t)

We know all of you want to be loving and helpful.  We know what truly amazing support we have.  We just wanted to help all of you know how best to support us.

The Invisible String

Our good friend Becky brought over a gift for Evelyn.  It is a book called “The Invisible String”. 

The book talks about a string that connects people who love each other.  When we think about them it gives a little tug, and when they feel it, they can tug it right back.  It talks about strings that can reach all the way to those who have passed from this world.
So last night, we all sat on the couch.

I tied one string end of a string around Evelyn’s wrist.

And the other around Rowan’s.

And so they were bound by a string.

And we read the story.
At the end of the story I clipped the connecting string, leaving them with a bracelet.  One on Rowan’s wrist, one on Evelyn’s. I told Evelyn that even though the string we could see was gone, the love we have for Rowan won’t ever be gone.  We will always love him and he will always love us.
Shortly after, she got up and took her bracelet off.  (She’s not a giant fan of jewelry).  That’s ok. I kept her bracelet.  It sits in my jewelry box for when she is older, and we read the book again.  I am going to bind the pictures inside the book, along with an envelope for her bracelet.
After the book, Evelyn and Rowan and Doc and I all snuggled in our giant bed. 

She may not understand the string yet….

…but she held her sleeping brother’s hand.

because she does understand love.

All Through the Night

Rowan had a very peaceful night. He woke briefly this morning. He was very hazy and tired, but was clearly happy to see all of us. He has been peacefully sleeping since. It seemed like yesterday evening, he stopped showing any signs of pain or struggling, and is now just resting. We are with him.

We were absolutely touched by all of the pictures of candles.  I have saved them all so that we will remember what a brilliant light Rowan has brought to this world.

At about 11:30 last night, I had this amazing since of comfort, as if Rowan was letting us know that he was at peace now.  We’d all said our goodbyes, and he was ready.

Rowan has a strong little heart.  The hospice nurse yesterday said that she didn’t think he would pass last night (though no guarantee) because his heart was still pretty strong.

We understand that many of you are anxious for news. Rest assured that we will let you know when there is news to share. Please refrain from…well for lack of a better way to put it “is he dead yet?” texts. Also, many of you have posted about Rowan on Facebook, which is sweet and thoughtful and wonderful.  Please correct those who believe him to be dead.  It is very disheartening for us to see so many people talking about him as if he is no more when he is still here. Rowan’s journey will end when he is good and ready. He is running the show.  We’ll let you know when he closes the curtain.

Lighting the Candles

Today, Rowan rapidly begin to shut down. He has not been awake. He is sleeping and peaceful.

Hospice did come see him.  They believe that he will probably pass within the next 24 hours.

We have lit his candle, along with our candles to burn with the warmth and love that we have for our beautiful son.

If you would, light a candle for him. Let him feel the warmth of all those who love him and wish him well on his journey to the next place.