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.