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.