Keeping Our Promise

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

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

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

And it made me step back for a second.

10 months. It’s been 10 months.

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

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

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

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

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

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

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

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

Making Hospice a Gift

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

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

Read books about death and love.

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

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

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

Continue to live in ways that you can.

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

Have photos taken of you as a family.

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

Start some sort of therapy.

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

Make a wish.

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

Prepare others.

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

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

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

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