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

Click here to view this photo book larger

Shutterfly baby photo books are the perfect way to preserve your baby's precious moments.

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.