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.

And Fading…

Nursing came out today. Rowan’s color has changed quite a bit. The changes indicated that Rowan is rapidly approaching the point where he will not wake up again.  Once we hit that point, it could be a day or two before he draws his last breath.

We decided to go ahead and stop his IV fluids because he is retaining fluid in his lungs.  This means he is attached to nothing, but still has a port so we can give him meds.

Yesterday I walked him around the house and showed him all of the things we have to remind us of him.  I showed him the wolves. I showed him his candle that we will light on his birthday and anytime we miss him so badly we want to remember the light he brought to us.  I showed him our “strength” sign, with a howling wolf in the background and his shield with his name (thank you Aly). I showed him where I want to hang his handprint and promised him that his quote and wolf pictures will stay in his room along with our diplomas and awards, as he is one of our biggest achievements.  I told him that we were going to make a book for Evelyn with all of their stories in it so she would remember him too.

I told him how much I love him.  How happy I am he picked us, and everything else that I have said to him every day of his life. This morning I took him into the living room and we curled up and slept on the couch.  He laid in bed with his daddy for a while too. 

We can feel that his light is dimming. We are so thankful that we have had so much time to say goodbye.

Spirit Songs

Last night, a group of singers from All Souls came out to our home.  Rowan’s fantastic primary care doctor (and our friend) went to church on Sunday and they talked about music and how it allows us to express some really hard emotions.  She asked if we’d be interested in having a group sing Spirit Songs for Rowan.  We happily arranged it.

So around 6:30, a group of 13 singers came into our living room and filled our home with beautiful harmonies and sounds of peace.  The songs they sang were perfect. Songs of peace. Songs expressing the fact that while we accept and acknowledge that our time with Rowan is almost over for now, that he will be in a place of peace.  Songs that helped us say goodbye, which is what the last few weeks have been.

Rowan slept peacefully through most of it, Evelyn fiddled about fighting her sleepiness, Doc filmed so we could remember this time and share it with Evelyn as she grows older and begins to have questions, and I…I just listened.  Sometimes the songs brought tears. Other times they brought smiles.

We are truly loved and blessed.  The singers filled our house with this sense of profound love and light. It was humbling and fulfilling.

Fading

Rowan is slowly fading.  He is now awake less and less. He is comfortable. It’s nice to know we can guarantee that for him. We are still taking pictures and having special moments, but will probably not post anymore photos.  Rowan has turned rather blue/purple and as amazing as the moments with him are for us, we understand that they may not share the warm fuzzy feeling we have with others and might be too hard to look at.  So I will instead tell you about some of the special things that have happened lately.

Rowan took a few naps laying on my chest, which doesn’t normally happen because he HATED tummy time..and it was just too close to that.

Rowan likes being held, so we do that a lot.  Lots of snuggling.  Lots of kisses.

Rowan smiles at his Dad a lot.  All the time.  He has nothing but smiles for Doc.

Doc played piano for Rowan.  Rowan liked it.

We went on a “camping trip” in the living room.  Rowan slept most of it, but we did go “fishing” on a blue blanket for brown trout and catfish, make shadow puppets, tell scary stories (Evelyn’s favorite was one her Dad told about a road runner who was trying to escape from a scary coyote who ended up falling off a cliff), and eat s’mores.  We also watched the Jungle Book and then used a star projector to light up our ceiling and we sang songs.

And that brings me to last night…

Last night I had a dream.  I dreamt that someone (I’m going to call them Death..but I mean that more in the sense of a guide for Rowan) was sitting in one of our dining room chairs next to Rowan in his room.  They were talking to Rowan about how it was almost time to go.  Rowan was smiling and shaking his head no (which he does all the time). Death (who looked a lot like Alan Rickman as he was in Dogma) told him there were other places he had to go and other people he had to be with, so they  had to go soon.  I woke up feeling a little weirded out by it.  I went in to Rowan’s room…and right by the bed, Doc had put one of our dining room chairs.  Exactly where it was in my dream. At first I was pretty freaked out, but after relaxing a little, I realized that I felt comforted.  Rowan isn’t alone. In my mind there is someone with him, helping him get ready to leave our world. It’s a nice thought.

Playing Together

Today was fun.

That’s right.  Fun.

Today we played like a normal family.  Evelyn decided she wanted to go “to the Aquarium” but we couldn’t all go, so I told her I’d make her a car so we could drive there.

 

And then when Rowan woke up we decided he should come with us in our car for the ride.  We follow AAP (American Academy of Pediatrics) guidelines very closely, so Rowan had to sit rear facing in his “car seat”.

Evelyn took very good care of all passengers and made sure they were buckled.  Rowan had so much fun listening to her talk and play, despite being slightly concerned by her crazy driving.

 

 

Then after all of that crazy time in the car, we decided to curl up and watch a movie.  Rowan was very excited about the Lion King.  Evelyn explained the movie to him and told him “Don’t worry Rowan, it will be okay” during all the scary parts. 

It was just a fun and beautiful day.

MLH Make a Wish

MLH (Mended Little Hearts) is a wonderful support group for families with children who have CHD.  They have been a fantastic source of strength and comfort for us through out our journey with Rowan and provided a place where we felt “normal” and understood.

A few weeks ago, the monthly meeting was fantastic.  We met with people from the Make A Wish Foundation to talk about supporting wishes and getting wishes granted for CHD kids.  Make A Wish grants wishes to children 2.5 years to 18 years of age.  So, of course Rowan isn’t old enough for one. 

So the ladies from our Tulsa chapter decided to grant a wish for Rowan on their own.  They called and asked me what we wanted to do.

At first we really struggled to come up with anything.  Rowan sleeps so much that trying to plan something to “do” wasn’t a good idea.  So I thought back to that meeting.

Make a Wish grants 4 types of wishes:

I wish to be…

I wish to go…

I wish to meet…

I wish to have…

And I realized that what I wanted to have was something concrete to remind Evelyn that she and Rowan liked each other and did things together.

And suddenly, I had an idea! My sister-in-law had thrown a Piggies and Paws party a few years ago when I was a first year teacher and we were WAY too poor to do anything like that.  What Piggies and Paws does is take hand/footprints and turn them into art! 

I thought it would be incredible if we could get artwork made out of Rowan and Evelyn’s prints and then take pictures of them doing it together.  This way we could show Evelyn pictures of them doing it together and then always have the art to hang in our house.

I texted the MLH chapter leader and told her my idea, promising to think of a back up just in case…

and she responded with “No need! We have someone that can come tonight or tomorrow!” Raylea, an artist in Tulsa, heard our story and their request and came out the same day to make our wish for Rowan and Evelyn come true.

To say I was humbled and touched is to scratch the surface.  Here are pictures of us doing prints.  We decided to do a fairy tale theme:

Rowan’s hand turned into a knight

Evelyn’s foot turned into a dragon (she picked it)

My hand turned into a forest

Doc’s hand turned into a castle

And then we also did handprints of Doc and Rowan overlapping and a foot print of Rowan’s to turn into a plane.

We are so happy to have these special moments together and to have these beautiful pieces that will hang in our home.  The finished products will arrive in a few weeks and will serve as a fantastic reminder of the beautiful days we are sharing with Rowan.  Thank you to MLH, and to Amy for the pictures! (And for being there along with Meredith to share the evening with us)

Amy does photographs for families with children who have special needs.  You can view her photography at: HM Photography by Amy Schroeder

July 18th

Last night was hard.  So hard.

I will happily admit that I have a wall up right now.  I am sad.  Terribly sad, BUT Rowan is still here.  I refuse to weep all the time when he is still here.  I can still hold him. Talk to him. Sing to him. Play with him. See him smile. Put socks on his feet when they are cold. I can still do those things.  Mentally and emotionally I feel very well balanced.  I am accepting of what is happening and embracing my role as his loving mother.  I want to ease his passing, this giant transition from our world to whatever is afterward.  How can I love and comfort him if I’m sobbing all the time?

So I refuse to sit and think about how hard this will all be afterwards..because we aren’t there yet. And I can do that…most of the time.

Last night, it was bed time and Evelyn started SOBBING.  She was super upset, and couldn’t calm down.  She kept saying “Mom, I’m not okay” and then would say something like “Can I have a drink of water? That would make me better.” So we went and got a drink of water from the kitchen and she started kept crying.  She was so upset and seemed so confused that she didn’t feel better. It was like she couldn’t understand why nothing made her okay.  Why couldn’t she calm down?  Finally she sat down in her bed and said “Mom, I don’t want baby Rowan to die. We need to go to the hospital.  They’ll make him better.” So I of course started sobbing.

“Evelyn, I want Rowan to get better too. I don’t want him to die. But his heart is broken and we can’t fix it.  The doctors tried.  That’s why he went to the hospital so much. But he is home so we can love him and spend time with him. It’s okay for you to be sad Evelyn. It’s okay to cry. It’s okay to want him to get better.”

She cried for a long time and then slowly settled down. I sang to her for a while, sounding choked and letting little whimpers escape periodically.

Once she finally went to sleep, safe in her bed, I went to mine and starting sobbing. I don’t want my son to die. Every fiber in my being wanted to go hook a feeding pump up and tell Rowan that he had to get better because I couldn’t do this. I can’t say goodbye. I’m not ready.  How will I go the rest of my life knowing there is this giant hole next to Evelyn that is unfilled? How will I ever look at family pictures, or stockings hung on our fireplace, or at a table setting and not think “there should be 4”? How?

So I cried. A lot.

And then I put myself together, went into Rowan’s room, sat down in our rocking chair – just the two of us (until our dog laid next to him on my lap) and we rocked. I sang him his lullaby I made up a while ago and he smiled and then fell asleep.  Every time I would start singing, he’d smile in his sleep.  We just cuddled for a few hours, with me crying periodically and my tears landing warmly on the soft blankets we wrap him in. I kissed him and just spent time truly enjoying him.

I talked to him about how I felt. I told him that we were listening to him. That I wanted him, and no one else. How proud I am…how whatever is after, there will be peace. No pain. And friends. Oakes. Grandma. Grandpa. And one day I will come find him.

And then I went to bed.  I woke up this morning to Evelyn going

“Hi Rowan! You are awake!”

Rowan, “AHHHH”.

Evelyn: What?

Rowan: Ahba

Evelyn: Rowan, I don’t understand you.

Rowan: Ahba

Evelyn: WHAT? Do you want to play with your toys? Here you go!

Rowan: AHHHH

Evelyn: There you go! You like your toys?

New day. New battle. Rowan has been awake and playful for a few hours.  Sleeping more. Still here. Still loving us. Still beautiful.

How do you tell a 2 year old that her brother is going to die?

Straight and simply, you just say it. We have a script we try to repeat (repetition is the key to learning).

Rowan is dying.  His heart is broken. The doctors tried to fix it and we tried to help him get better but we cannot fix him.  Rowan likes us.  He likes you.  He wants to smile and play with us so he is at home now. We want to spend time with Rowan before he dies.

We talk about how we won’t go to the hospital anymore.  “Rowan is all done at the hospital”.  We talk about how Rowan doesn’t hurt.  Rowan feels ok.  We give him medicine to make sure.

When Rowan is dead, he won’t be able to smile or play. He won’t breath.  We won’t hear his heartbeat anymore.  Rowan will be gone.

She has shown understanding by repeating and varifying what we say.

She also is regressing some.  She has started trying to put everything in her mouth and chew on her fingers.  We offered her a baby teether and insist that if she wants to put something in her mouth, it must be that.  This keeps her from mutilating her hands or getting sores.

She also is afraid of sleeping in her bed.  At bedtime, she gets in bed with us and we watch variety TV (So You Think You Can Dance or Americas Got Talent) for about 20 minutes and then she will normally ask to go to her bed.  She likes her bed better so she actually prefers to sleep there, she just needs to feel safe first.

The hardest thing to cope with is that she wants to be held a lot more and she screams.  Loud. Frequently.

She starts screaming whenever she is upset.  If we calmly say “I can tell you are upset and I want to help you. Can you talk to me and tell me what is wrong?” and she normally responds well to that.  When she stops…we send her to Grandma’s house.

We are treating Evelyn like a person.  We talk honestly to her about what is going on and don’t hide our feelings or emotions from her.  She is sad too, she just isn’t entirely sure why.  We play games with her and try to spend time together too.

We have nursing coming in now to do periodic shifts so we can clean or nap or do laundry or sleep.  It helps.  Rowan gets morphine whenever he needs it.

We had to turn Rowan’s IV fluids down today because he had started getting puffier again.  He is now tolerating less than 10 ounces a day of fluid without it causing him to swell. 

This is happening to us and to Rowan and to Evelyn and we make sure we include her in this process.  We answer her questions. We talk to her about how he is doing.

We also have started to clean out some things.  For example, Rowan’s “oral therapy” tools we used to try to get him to take a bottle or food…Rowan doesn’t need them anymore.  We talk about how Rowan isn’t hungry and doesn’t need these things, so we can get rid of them.  We hope that by starting this now, when Rowan has died, we can clean out his things and tell her that he no longer needs them without her being as concerned by it.

We also tell her how much we love her.  Often. Because she is amazing.  She is a wonderful big sister.

July 16th

Yesterday we spent waiting to figure out hospice arrangements.  Basically we had a big fiasco in trying to figure out enrollment and decided to take him home today instead.

Rowan was definitely starting to sleep more and feel a little more crummy.  We asked to make his morphine more frequent.

I freaked out yesterday.  I called the hospice nurse (and I think all hospice nurses must be angels) sobbing because I kept thinking “but what if he can get better?” We knew he wasn’t hungry, but it was so hard for me to see him getting fussy and upset and not suddenly say “DO EVERYTHING!” because this is so overwhelmingly sad.  I have started crying more.  Just because I am

1) So very very heartbroken and sad that this is Rowan’s fate.

2) So very very thankful and joyful that his ending is so magical.  The day after we decided to go the hospice route, Rowan started crashing, and became this beautiful happy son we wanted so desperately to spend time with.  And we did.  For three whole days he played and cooed and laughed and smiled.  And now he is sleepy.  Who could ask for anything more peaceful and dignified? I cry tears of thankfulness frequently.

Today we were trying to get him discharged. Our hospitalist (different one now as they had a shift change) stopped in to tell us that he was going to make phone calls to get things moving and that he was also going to act as our advocate to “The Sisters” regarding our decision not to use TPN.

I still felt sick that this decision was being so hotly contested.  All I want…all I have ever wanted, is what is best for Rowan. Every decision we have ever made has come from our hearts and been full of love.  And none of them were easy.

I left the hospital for a while to get drinks for us.  Doc called to tell me that the hospitalist came by.  He’d explained our situation to the sisters.  After hearing Rowan’s situation, story, and our reasons for believing TPN would hurt more than help, they not only agreed with our decision, but said to tell us they were proud of the way we have lovingly cared for our son.  If I ever see a nun again I am going to hug them for a borderline inappropriate amount of time and thank them for being a pillar of the teachings of Jesus and showing compassion and love towards our son.

We brought Evelyn up to the hospital for Rowan’s last discharge.  I took her to all her favorite places.  She played in the tunnel in the lobby, looked at the giant flowers outside the window, and got a sticker from security.  She helped us carry all of Rowan’s toys and clothing out.

And then,

as we left,

we said goodbye.  “Good bye Rowan’s Room.” “Good bye nurses.” “Good bye flowers.” “Good bye golden flower on the door” “Good bye elevator”…

And then Rowan stopped making noise.  Doc stopped pushing the stroller and he, the nurse, and I all stared.  Then Rowan started to move and we all let out a sigh of relief.  Doc laughed and said “Well, that would have been really fast.” Then I looked at the nurse and said “What a horrible end to your shift right?” And we had a good natured laugh about the fact that we all for a moment thought Rowan had died.

As we left the hospital, we all yelled, ”Good bye hospital.”

On the drive home I told Evelyn “Rowan will not be in the hospital again.  We won’t go see him there anymore.  Rowan is coming home.  When Rowan dies, we won’t see him anymore, but he won’t be at the hospital. He will be dead.”

Evelyn responded “I know Mom. Rowan is dying, but he’s not dead yet.”

“Exactly.  Let’s go home.”

So home we are.  Rowan is sleeping peacefully in his own bed.  We are watching Robin Hood Men in Tights. 

Tomorrow the hospice nurse and our beautiful home health nurse (who visited Rowan in the hospital several times and has offered to be here as our friend if we need her) will come by.  We will have nurses here at night to take care of Rowan so we can sleep.  We will love him in his last days.

“He came naked, by night, alone and very hungry; yet he was not afraid.”

That quote has stuck with us for all of Rowan’s life.  Doc told me today, “As Rowan leaves us, he won’t be naked, he won’t be alone, and he won’t be hungry…and he is still not afraid.”

July 15th

Yesterday was the hardest day I can think of that we have been through. 

We had decided we did not want to put Rowan through a prolonged period of discomfort by starting TPN.  We decided that if Rowan wasn’t hungry, giving him IV food wasn’t fixing a discomfort for him, so we weren’t going to force it on him.

This was something that was a giant ethical issue for our pulmonologist and our hospitalist.  The pulmonologist (whom we love and feel has fought for Rowan every step of the way) wasn’t comfortable with our decision.

This triggered a realization that our hospitalist was also not okay with it AND the realization that it was against hospital policy to not give TPN and IV fluids, regardless of patient or parent refusal. 

After being extremely distressed and upset by this thought system, we decided to find out our options.

Option 1: Do TPN

Option 2: Go home. Let Rowan die here, in his room, with family.  Evelyn may be exposed to it.  We will forever walk by some room in our home and know that Rowan ended his life there.

Option 3: Clarehouse, a hospice facility that takes children.  At Clarehouse, Rowan would not be allowed to have an IV or get anything through his G-tube…so no meds except for ones given rectally or through a patch.

We almost immediately eliminated option 3.  We didn’t want to stop Rowan’s meds and IVs yet because as of right now, he’s still pretty playful.

Option 1? Well, to be honest, we considered it.  We felt like we were crazy after the incredibly charged accusation that came along with our decision not to force feed our son who wasn’t hungry.  We talked and talked about this.  In the end, we decided that if we started TPN we would be doing something TO Rowan, and not FOR Rowan.  We would not be meeting our goal of keeping his quality of life the best it could be, because it risked prolonging the unpleasant part of the end of his life.

So we decided on Option 2.  Rowan is coming home Monday on hospice.  We will guide Evelyn and Rowan through this time.  We will do what is best for our son.

So today we spent time with Rowan, who is starting to become more uncomfortable.  I took Evelyn to a movie for some mother daughter time (Sunday is our day).

We talked to child life.  We told Evelyn that Rowan is dying.  We cried a lot…because Rowan is approaching the end far quicker than we thought he would when we decided to go the hospice route.

I understand that from an angle of thinking, not giving TPN is “starving” a child.  Rowan may die, partially because of a lack of nutrition…but he wasn’t hungry.  His digestive system was shutting down…shut down in fact. TPN wasn’t going to fix him.  To get enough calories in Rowan through TPN would be enough fluid that it would make him too puffy.  Same with feeds.  IV nutrition wouldn’t fix him, and it would likely make him more uncomfortable. Why would you force feed someone who wasn’t hungry…especially if they weren’t hungry because they were dying?

I don’t get it.

But we are doing what is best for Rowan. We are listening to him.  We are meeting his needs.  That is what we can do for him.

July 13th

Yesterday was a big day for me in understanding Rowan’s body.  The question came up “do we start TPN”? TPN is an IV nutrition.  Rowan would receive all of his foods through an IV.  I had seen on an adult DNR and living will form a box that said “do not give me IV nutrition”.  That made me think this was something I wanted to ask hospice about before we started it.

Rowan wasn’t tolerating any food.  He hadn’t eaten and kept food down in almost 24 hours and…he was HAPPY!

Yesterday morning I walked in to a smiling, playing, kicking, toy loving, kiddo.  It was honestly the first time I’ve played with Rowan for a long period of time and he didn’t look like he hurt.  He also wasn’t sucking on his hands, demanding his pacifier, or doing any other “I’m hungry” signs.  He was happy all day.  I mean ALL day.  He took a nap, but when he wasn’t asleep did nothing but smile!  They even tried to put in a PICC line (special IV) to do lab draws through.  They tried several places to get one and Rowan didn’t even get upset.  He lay there listening to music and just relaxed.  Rowan was SATing higher, coughing a little less, looked like he was circulating blood better, and looked less blue.

So I called the hospice nurse I spoke with.  With so much looking better (including his kidneys) it seemed weird that he wasn’t hungry, but was happy.  When I talked to her she talked to me about system failure.  How the digestive system starts to shut down and releases chemicals that make it so people who are dying are not hungry or thirsty.  Rowan no longer is trying to force food down a digestive system that is uncomfortable and he isn’t hungry, and he’s happier.  She said that with system shut down, the body releases chemicals that cause it to stop absorbing nutrition correctly and that TPN wouldn’t necessarily help him.  We were also concerned that if we started TPN…we would have to stop it at some point.  That is much harder to do than to say “please don’t”. 

So she posed another option…if he acts hungry…feed him.  What a novel idea, right?  So that’s what we decided.  If he’s not hungry, don’t feed him.  If he starts to show any signs of hunger…by all means, let’s try it again.

Today, Rowan was even happier.  He played with my nose, pulled my hair, and was SATing higher.  He looks great.  He hasn’t absorbed food in two days.  He played all day.  He smiled.  He flirted.  He cuddled.

Child life came and did an impression of his little hand.  Then later they did hand prints of Evelyn and Rowan side by side on cardstock.  We will forever treasure those little hands together.

Meanwhile…Evelyn noticed the picture of a sun on Rowan’s door, that is also through out the floor.  She called it a golden flower…despite my insisting that it is a sun. (remember this detail, it comes in handy later).

After the handprints, Evelyn went home for a nap and I stayed with Rowan. 

Rowan’s pulmonologist came back and seemed very surprised at how much better Rowan looked.  …and then he asked if anyone had talked about doing a J tube for Rowan’s feeds.  A J tube means the button in his stomach would have a tube inside it that went into Rowan’s digestive system past the stomach.  It means he would be constantly hooked up to the feeding tube, and it would likely mean another Nissen for Rowan as well (so he can’t throw up).  This was something Matt and I dismissed really because we aren’t interested in more interventions.

Then the hospice doctor came by.  Talking with him made me feel even better about understanding Rowan.  We are finally listening to him. He isn’t hungry.  ANY parent knows that a 7 month old who hasn’t eaten in nearly 3 days should be inconsolable.  That isn’t him.  He isn’t acting hungry and he’s happy.  We are going to enjoy it and we will not touch him.

…so after talking with hospice and feeling like we truly understand Rowan and what he is going through, we feel like this is truly the right choice for our son.  Especially since the “solution” to his eating is either TPN which we don’t want or a J tube which we don’t want.  We are ready to give our son the dignified and peaceful death he is showing us he is ready for.  This “happy Rowan” is a gift.  We understand it as such, and not a sudden turn around.

So Doc calls the physician taking care of him in the hospital to fill him in on what was said by hospice…and the physician tells him that our pulmonologist has (get this) requested a meeting with all of Rowan’s specialists.  ARE YOU KIDDING ME!?!?!?!?!? We BEGGED for that meeting for the last few weeks.  Do you feel like hospice is a bad choice now? Because that seems like a TODAY conversation, not a MONDAY conversation!!!! 

To say I feel sick to my stomach is an understatement.  We have grieved over this decision to change Rowan to comfort care for MONTHS!  This wasn’t decided easily.  This was decided after 7 months of putting on a brave and loving suit of armor ever day to fight through all of the suffering Rowan endures on a daily basis.  It comes after watching 7 months of a dwindling quality of life. It comes after meeting with child therapists, and talking to many doctors, and more “all nighters” than med school or college combined FIGHTING for Rowan.  I have always fought for what was best for him.  My gut has been right.  AND NOW…Now that he isn’t receiving full nutrition and we’ve discussed end care…now we’re having a meeting??  I have this terrifying idea of Rowan being ready to let go..and them some ethics group coming in and telling us that we have to do something to Rowan that lowers his quality of life but makes him suffer and us watch it for even longer.  Doc told the physician we were concerned about this request for a meeting and asked if there was a thought that hospice should be reconsidered.  The physician asked that we discuss it tomorrow.

SO I will not be sleeping.

At all. 

I’m going to sit here and cry and sob because I have fought so hard for Rowan…and I never imagined that I would have to fight to give him a death that wasn’t as horrific as parts of his life have been or worse.

So we went home.

I put Evelyn in bed, and tried to go through our routine.  We laid down. I covered her up.  I read her “I Am a Bunny” and sang her a song.  During her lullaby I started crying.  The following happened (remember the golden flower on his door?):

Evelyn: Mom, why are you sad?

Mom: I’m sad because Rowan is sick.  I miss Rowan.  I wish he wasn’t so very sick.

Evelyn: Mom, it’s okay.  Rowan is going to be okay.  I will sign him a song. He has a golden flower.

AND CUE ME LOSING IT!

Let me back up.

Since Monday, Evelyn has been dressing up as Rapunzel from Tangled.  She asks to see the movie over and over again.  She always wants to be a “princess” and wear her Rapunzel dress.

Tangled has a golden flower in it…and when you sing, it heals people who are sick.

If only there was a golden flower.  If only I could sing to Rowan and he would be better…if only I could do that for you Evelyn.

If only fairy tales were real.

But they aren’t.

What is real is that my son has been happy and playful and loving for the last two days.  When that changes, we will adjust treatment.  What is real is the fight that we survive daily to do what is best for Rowan, the fight that has seen many battles.  And we will win the war.

What is real is the incredible love that binds our family together.  The love that already has saved Rowan…it saved him from a meaningless life of suffering.  He has had a beautiful life, despite the suffering…because of the love we have for him and one another. 

That is his fairy tale.  It starts with love.  It ends with love. And the love he’s taught us will live on. Golden flower or no. 

July 11th

Today Rowan’s BUN rose to 17 and his Creatin rose to .66.  His kidneys are continuing to show signs of failure.  He is also having trouble with constipation and is no longer tolerating food.  He throws everything back up.  They started him on IV fluids today to compensate some for the lack of food he is getting.

This evening they took his blood pressure.  We want Rowan at 90/60ish.  Rowan’s legs were 40/15 and his arms were 70/20.  That’s too low.  The thought is that the medicine he gets to make him less puffy, coupled with losing fluids by throwing up has significantly dehydrated him.  They are turning up his fluids and we will wait to see if that works.

From a non-medical standpoint, Rowan seemed very calm most of today.  He was upset when he threw up or gagged.  He did have some time this afternoon where he smiled and played and was very responsive while I talked to him.  I love those moments where I see him and for ten minutes, we are fine.  Nothing is wrong.  We’re just happy to see each other.

Evelyn spent some time with him at the hospital.  She asked me to go see him this morning.  After she started getting a bit antsy in the hospital room, we went to a nearby park.  While she was up on a jungle gym, she looked down and suddenly got very scared.  She froze and started crying and screaming for help.  When I picked her up and got her down, she told me she wanted to go back and see Rowan again.  So we did.

Early afternoon, Evelyn and I had a girl date.  We went to buy some dresses.  The last few days she LOVES dressing up and asks to be called “Princess Evelyn” so we went to the “Princess Store” (aka Disney Store) and picked up some dazzling shoes and pajamas.

We are hesitant this evening since Rowan’s blood pressures have been so low.  Whether or not these things turn around is a big indicator in what our time left looks like.

We decided to take a break from the hospital for sanity’s sake and went home to spend time with Evelyn.  When we got home, our house was spotless (including Evelyn’s nightmare of a room), our laundry was done and folded, dinner was in our refrigerator, and breakfast for several days was dropped off.  Thank you so much to my amazing friends at JWI. 

You have no idea how much your presence and aid means to us.  It’s wonderful to get to be Rowan and Evelyn’s parents right now.  To just rest at home so we can handle the emotional pounding the next day will bring.  It truly made a giant difference in our day.

No Long Term Solution

Doc and I have known for the last few weeks that we were rapidly approaching a dead end.  Rowan isn’t showing any signs of improving and is instead slowly getting worse. 

Yesterday we noticed his discomfort level was much higher.  He had turned much bluer and puffier and was working harder to breathe.  Despite how heart wrenching it was for us to take him to the hospital, we knew that at this point he needed to be taken in.

We were grateful that Rowan’s primary care doctor was able to get him a bed so we didn’t have to go through the ER.

Rowan is now at St. Francis, receiving treatment for some of the symptoms that he has that are contributing to his discomfort.

After meeting with the pulmonologist today, we feel like this is very likely a lung issue.  Rowan has been on a ventilator for a long time in his short life and that can cause lung damage.  That is likely a sizable part of the problem. With all of the procedures he’s had, his lungs have likely sustained some CF damage.  On top of that, there was a cath Rowan had in March that showed some varying pressures in his pulmonary vessels meaning he might have some narrowing that is causing that too.  There isn’t really a fix for these things.  Several months (like 6-9 months) with no ventilation and good health might help his lungs recover, but that is not likely a possibility for him.

We are trying some antibiotics right now just in case there is a lung infection.  We should see some improvement over the next few days if they are working.  We will re-evaluate at the end of the week.

We are going to talk to the palliative care team at St. Francis tomorrow to decide what end of life care looks like for Rowan so we can set up hospice should he need it.

Every time he smiles I start to tear up.  I am so proud of him.