Tuesday, April 16, 2013

In Lieu of Flowers - Part One...

Let me tell you a little story about two brothers, a wonderful woman and an invisible string.

When we knew that Gavin wasn't going to make it, my immediate thought was Brian.  How in the world were we going to tell this sweet little boy that his brother wasn't coming home?  I was so nervous.  Brian had seen Gavin in the hospital before - even very sick in the intensive care unit.  But this was different.  Gavin was completely unresponsive and his appearance each day was changing for the worse.  We finally decided to have him come in after having a discussion with the wonderful Jenn from the hospital's "Child Life" department.  She told me about projects she could line up, books they could read, how she could explain what Brian could expect when he saw his brother... I was sold.

Brian came in with Miss Sara and we met Jenn from Child Life in an empty conference room.  The first thing she did was give us all white butterflies.  Brian... me... Daddy and Miss Sara all got one and we each colored them with markers.  Jenn told us all that we had to whisper a wish on our butterfly.  She explained to Brian that once we got to Gavin's room, she could whisper that wish in Gavin's ear.  Then, only Gavin and Brian and the butterfly would share that wish.
Next she pulled out a wonderful book called "The Invisible String."
 The book beautifully explains how there is an invisible string connecting us with ALL of our loved ones.  And, at any time, you can tug on your invisible string if you want to bring someone closer to you.  We all laughed as we practiced tugging on each others invisible strings.  Brian loved this story (and I ordered it  from Amazon before Jenn reached the last page).
After the book, we filled clear, plastic hearts with shiny gems and attached a translucent stretchy piece of string to the top.  Brian made one for himself and for Gavin.
Jenn told him that the stretchy string could be like the "invisible string."  Maybe he could hang it in his room and pull on it any time he misses Gavin.  (That's just what he did)
She asked Brian if he wanted to get messy - and, even though Brian isn't a messy kid, he seemed to understand that these activities were important.  He chose his color (red) and she placed it all over his hand so he could make a handprint on the canvas board.
It turned out beautifully.
It was time for us to go back to see Gavin.  Jenn got down on his level and lovingly explained to him some of the things he might see.  The tubes, the beeping, the wires.  She told him she had another surprise - a teddy bear.  There was one for Gavin and one for him so they'd always have the teddy bear between them.

As we walked into Gavin's room,  I felt Brian's hand grip mine a little tighter.  I swallowed the lump in my throat as I heard his little voice below me saying "Shhh....quiet. Gavin's sleeping."

He sweetly gave his big brother the teddy bear, saying "Here you go, Gavin!"
I lifted him up so he could give Gavin a kiss and he told him he loved him.
Jenn got to work on Gavin's handprint.  Brian chose blue - which is the color we love on Gavin.
I will treasure these side by side handprints of both of my boys.
Brian's experience was profound.  The Child Life department does such a great job - not just for children who are going to lose a brother or sister, but for all the patients.  Gavin has enjoyed toys and videos and stuffed animals delivered to his hospital rooms by the wonderful Child Life staff in previous visits.

We really bonded with Jenn, our Child Life specialist.  So much so that she came in over the weekend when she wasn't working to see us.  She thought we might like a ceramic casting of Gavin's hand.  We were so touched.
I can't express any more than I already have the overwhelming love I have for these two boys.  My constant goal as their Mom was and is to make things right for them.  I wanted to be consciously aware of their emotional needs just as much as their physical needs.  Having the support of the Child Life department - and Jenn - helped me so much.  She lessened my anxiety about bringing Brian in to say goodbye - Jenn worked with Miss Sara to help her handle questions from Brian after the two of them left for home - and she gave me lasting keepsakes.
Ed and I are so, incredibly grateful for the beautiful experience Child Life gave Brian... Gavin... Miss Sara... and us.  We want to give back to them as our way of saying thank you. Jenn ended up convincing me that it would be okay, and I'm so grateful she did.  I would bet that Gavin was the most grateful, actually.  I am sure he was waiting for Brian.
Maybe someday one of them will let me in on their butterfly secret...
So, if you feel so moved - please consider giving to Nemours Child Life Department instead of sending us flowers.  You can give money by going to the Nemours website and clicking on the "Make a Gift" tab.  It will bring up a secure form and you should check the "other" box in the Donor Designation section.  Then, down below, you can type in "Child Life Department" in the Designation Note.  You will also be able to tell them that this is in memory of Gavin, which we would love very much.

If you'd like to help in a more concrete way, here is information from Jenn on what their department does and what their greatest needs are...

It is the job of Child Life Specialists to help patients and families cope with the journey of hospitalization from the youngest of children through teenagers.  Sometimes, that means a quick hospital stay and sometimes it is a very long stay.  Our gifted donations help provide toys to use for comfort as well as for distraction purposes during medical procedures.  Birthdays, holidays, and other special events are spent in the hospital and Child Life Specialists strive to help families celebrate these moments and utilize donations to make this happen.   There are also times when families need assistance coping with the end of their hospital journey.  Child Life Specialists use very specific tools tailored to individual family needs including special books as a therapeutic tool.  Often, families choose to have Child Life Specialists help in creating memory items to encompass a special life including plaster hand molds and handprints created on canvas with paint.  It is through thoughtful donations from wonderful people that help supply Child Life Programs with the resources to provide families with these powerful tools.  Whether it is a single rattle, a bottle of paint, or something larger, we appreciate and utilize all of our donations.  Thank you so much for considering us.
It is never easy for a child to be hospitalized, but your thoughtfulness and generosity will allow many of our patients the opportunity to 'just be a kid' and not think about their illness or injury.  A gift of toys, games, books, or crafts can do wonders to brighten a child’s life while they are in the hospital or clinic waiting room. Our Child Life programs at Nemours offer activities designed to help children cope with their hospital stay.  Child Life specialists in our hospitals are trained to work with children who have serious illness or are recovering from surgery — often using toys, games, and crafts to allow them to express their fears and hopes and regain a sense of mastery and control. 
We do ask that all items be new, clean, and unused for infection control purposes.  Currently, we are most in need of infant/toddler items and baby dolls.  Rattles and teethers are always great.  Also, any toys that are made of plastic instead of cloth (so we can clean them), toys that light up or play music, anything that makes noise, and the 'Little People' figures (not the sets, just the people) are all items we need.

Alaina Norvell
Child Life Assistant
Nemours/ Alfred I. duPont Hospital for Children
1600 Rockland Rd.
Wilmington, DE 19803
Phone: 302.298.7047
Email: anorvell@Nemours.org; Fax: 302-651-4073

Crib Mobiles (all plastic)
Crib Mirrors
Crib Projector/Soother

Little People (just the people)
Disney Toys (Princess, Cars, Minnie/Mickey, ToyStory)
Cause & Effect Toys: 

4-6 year olds
Baby Dolls (all vinyl or plastic—no cloth)
Duplo Blocks
Single Matchbox Cars
Plastic Tea Party Sets
Little People/ Wheelies
Fisher Price Medical Kit

6-12 year olds
Small Lego Kits
Action Figures (Spiderman, Marvel)
Play Food (Melissa & Doug)
Dress-up Kits
Video Games—Rated E

Nail polish kits
New Release PG-13 DVD’s
Teen Video Games—not mature rated (Xbox kinect/360, Playstation II or III)
Sport Team items
Movie Tickets

Playing Cards
Uno Cards
Connect Four
Candy Land


Coloring Books

Crayola Crayons, Markers, and Colored Pencils (8, 16, or 24 count)
Non Latex, Acrylic Paint  
Paint Brushes                                                

Bubbles- small individual bottles


Melissa & Doug Craft Kits


Model Magic

Sand Art
Scrapbooking Supplies


New Release DVD’s-- Rated G, PG, and PG 13—No R-Rated Movies
X-Box 360, Kinect, Wii, Playstation II, Playstation III, & GameCube Games-- Rated E & Teen—no Mature Rated games
Nintendo DS & Games-- Rated E & Teen—no Mature Rated games
CD Players
Ear buds/ Headphones
Robots/ Robot Dinosaurs

Rubbermaid Storage Containers with Lids- (S, M, L, & XL sizes)
Books, DVD’s, & CD's in Spanish—No R-rated DVD’s

Music Therapy Items
Wind Instruments
Alto Recorders
Train Whistles
Plastic Rainmaker/ “rain stick”
Percussive Instruments
Jingle Bells
Sleigh Bells 
String Instruments
Acoustic Guitar
Electric Guitar
Bass Guitar

Electronic Instruments
G-Project - G-Go Portable Wireless Bluetooth Speaker
ION Audio All-Star Guitar for the iPad
ION Audio Piano Apprentice for the iPad

ION Audio iDJ 2 Go for the iPad
Electronic Keyboard (Yamaha or Casio)
Portable Karaoke Machine

CDs for CD Pharmacy
Relaxation CDs for Kids
Radio Disney CDs
Children Music CDs 
Karaoke CDs
Sing-A-Long CDs
Princess CDs
Dancing CDs 
World Music CDs
Holiday CDs
Movie Soundtrack CDs
Musicals CDs
TV Show CDs

Hal Leonard The Easy Disney Fake Book
The Easy Disney Fake Book: Melody, Lyrics and Simplified Chords
Hal Leonard: The Disney Fake Book for Piano, Guitar and Vocals
The Easy Children’s Fake Book: 100 Songs in the Key of “C”
Hal Lenoard How to play from a Fake Book for Keyboard
Hal Leonard The Folksong Fake Book C Edition
Fake Book of the World’s Favorite Songs

**We are most in need of the Highlighted items**

Two more "In Liew of Flowers" requests will be posted tomorrow.

Thank you, as always, for loving our family.


  1. Gladly done! Such a great idea. I left it "in celebration" of rather than the customary "in memory" or "in honor" because I felt in my heart that your SuperGavin should be celebrated. I hope that was okay.

  2. As I sit in the hospital now watching a movie on the PS3 the child life has provided every room in the pediatric hospital, I know all too well the importance of the child life programs. Golisano Children's hospital likewise sent me a child life angel as I said my good-byes to my sweet baby girl. I cherish her handprints, her final bath and when I decided she needed her first and last manicure and pedicure, magically a box full of beautiful supplies and polishes appeared. SuperGavin is loved far and wide, as is your family.

  3. Crying again. This is a beautiful example of brother love. Your writing is beautiful, you are a beautiful mom. We will honor your precious Gavin by overwhelming Child Life with donations! What they do is amazing. Thank you for the opportunity to help. xo

  4. The "Invisible String" must be a good one; I googled for a different book earlier today and it came up with the same one! I posted it to your FB page actually. I'm so glad that the Child's Life Program exists.
    And my family and I will gladly make a contribution in Gavin's honor. we'll get some of the more specific items as well and arrange to ship to them. This is a beautiful way in which we can all help thank Gavin for being the amazing, brave little boy that he was and changing our lives. Praying for all of you as you continue on this journey.

    -Much love, Stephanie Clark-Leith from Kansas City

  5. I know you're flooded with messages right now so I have simply "liked" your facebook postings instead of commenting on them or messaging you. I want you to know though, that your family hasn't left my heart since the initial status that Gavin was in trouble. Over the last 2 years you and your family have become a part of my daily routine. I've checked obsessively for updates over the last week and explained to my kids who the little boy on the computer desktop is and why Mommy is crying even though she's happy for him too. The last time Zoe donated her hair she did it in memory of a little boy that was very special to us who lost his battle to Neuroblastoma when he was 8. This time she will do it in memory of Gavin. I will post pictures of her mailing it on the Chasing Rainbows page. I look forward to your journal entries daily. Although they'll clearly change some in the future I can't wait to read about the big things happening all around the world because of your Superhero Son and about the new things that Brian & you and Ed are doing as well. I just donated $100 to the Child Life Department in memory of Gavin. I love you all and your family will forever be a part of my heart and my world. Thank you so much for sharing your life with me.

  6. You humble me as a mom and you inspire me as a human being. My heart is full because of you and sad because of what you have lost. You are the good that makes even the toughest of times somehow manageable. Gavin chose the best parents, the parents who could ensure his life was full. The people who would ensure he experienced pureness, love, and exemplary examples of what the human spirit is all about. While I do not pretend to know your grief, I take personal joy in your public handling and for leading by example. Allyson MacKay

  7. I'm reposting this on my Facebook page and urging people to donate or help in any way they can. I hope you know how much your story has moved many and how much Gavin has inspired us all. You and your family will continue to be in my thoughts.

  8. This Child Life Program is absolutely amazing; the stuff Jenn did will help Brian for years to come. They so deserve all of our support. I also gave "in celebration of" Superhero Gavin. The effect that he's had on so many people is to be celebrated. XO

  9. In celebration of Gavin and for all the times your family's day was brightened by Child Life. In honor of Jenn for rushing down with Gavin's super hero poster and for the way she took care of all of you, and especially Brian and Gavin. The Invisible String connects us all and especially you and your family and loved ones. You've connected us by invisible strings.

  10. This is amazing! I am so glad Brian was able to benefit from these caring, sensitive rituals. I would have liked to have offered our daughter some of these options when our son died.

  11. You are amazing! I love this idea and I would love to make a donation to Child Life in honor of Super Hero Gavin!

  12. Done! Donated to the Child Life Department!

  13. I know you don't want to be supermom, I know you just want to be a regular mom with your arms around your two sons. I am so sorry you have to carry Gavin in your heart from now on. I have been blessed by your words, and blessed by your story, and will never forget any of you. May the thoughts of all you inspire, lift you up in comfort and surround your family.

  14. I have "The Invisible String" and it is such a remarkable book! Though I was only given it last Christmas, I immediately connected it to an experience during my childhood (when my own best friend never came home). I wrote a post about it and shared it on my own blog (http://theselittleblessings.blogspot.com/2012/12/mama-knows.html).

    Please know of my prayers for your family. I'm a college student and can't afford a monetary gift, but please be assured of my prayers during this difficult time. Many blessings, love, and hugs!

  15. I can not stop the flow of tears from reading about your remarkable littke boy,Gavin. As a heart transplant recipient I wholly understand the gift of life your little angel is giving to so many. I will say prayers for Gavin and your family.YOU ARE BLESSED-Beth

  16. Kate, My heart is aching for you and your family. I just heard of your blog through a friend of a friend of yours... Im so deeply moved by your journey and how strong you are. I am filled with admiration for how you and your husband (and sweet children) have endured. I have two young boys. I will think of you and your boys everyday - sending so much love and strength - Best, Emily B. Oxford, Mississippi

  17. When I was in with my girl for 3 days, they stopped in every day to see if she needed anything. They knew that a healthy 10 month old trapped in a little room with EEG cables glued to her head would need entertaining. They do a wonderful job and are great people. I will gladly donate to them!

  18. Dear Kate,

    First, you are amazing. As a fellow mommy, my heart breaks for you right now. I have been reading your words for the past few weeks, and praying for you, Gavin, and your sweet family. Your boys are so, so lucky to have you. I am a pediatrician in Kansas City. I know firsthand how important and amazing child life is. I am going to give a donation to your child life department. So glad that you had Jenn to help you through this difficult time. So glad you have a Miss Sara, also. I will continue to pray for you, Brian, and your husband.

  19. This is the most wonderful program in a hospital that I have ever heard of. Jenn sounds like an angel sent from heaven. I will be proud to make a donation to them in celebration of sweet Gavin. xoxo

  20. My heart is breaking for you and your family. But at the same time, my heart is filled with the love that you all have for your family.

    The way you made this transition special and memorable for Brian is something he will remember with love and comfort, not sadness. This is the best gift you could have given him. Your boys are so lucky to have you as their mom. *hugs* to you and your family in the difficult days ahead. xo

  21. I have thought about you and your family constantly over the past several days. It is amazing how you can feel such emotion for someone you have never met. As a mother I simply cannot comprehend how you must be feeling. I hope that you can truly feel the thoughts and prayers of so many people your story has touched. And I am humbled by you and your husband's selfless decision to donate Gavin's organs. And did you know that April is national Donate Life month? I will be running in the Donate Life 5k in honor of Gavin this Satuday. My thoughts and prayers are with you and your family.

  22. I watched my Aunt go through the loss of two of her 6 children. No mother should have to feel that pain. I'm sending all the prayers and love to you and your family that I possibly can. My heart aches for you. I wish I could do more.

  23. I think of you daily. Your vulnerability here is astounding. We are all lifting your family up...pulling strings for you, too.

  24. I only discovered your blog yesterday, but I wanted to share something with you. I am a nursing student. I've been questioning my decision for months. Yesterday morning when I woke up, I finally admitted out loud that I don't want to be a nurse. I spent the day online checking into other options. I came across this job I'd never heard of; child life specialist. I researched it and then took a "facebook break" and found this entry on your blog about Jenn. I knew instantly that I had found what I was meant to do. I want to thank you, your family, and your sweet angel, Gavin. He has touched so many people, in so many different ways. I promise to honor his memory by pursuing this important career and making a difference in childrens lives as Jenn did for Gavin. Thank you. I will say a prayer for your family today and I hope you can find peace knowing Gavin has left such a tremendous footprint on this world.

  25. Kate, I just ordered several items on the list (using your amazon link on the left) to be sent directly to DuPont. What an incredible organization. You continue to amaze me with your courage and grace every day, and the world is better for having had Gavin and your family in it.

  26. Done! I, too, selected "In celebration" because it sounded so much more appropriate. Thank you for sharing your lovely family with all of us. You've touched my cynic's heart in a way I wouldn't have thought possible. I found you through the Monkee network and am profoundly changed by having the honor of bearing witness to your journey. I hope for healing, health and happiness for you, Ed and Brian.
    Kimberly Owens

  27. Love the pics! The boys have such a wonderful relationship I am so glad you took Brian in to see Gavin someday Brian will realize that even though people die love never dies.

  28. Tears upon tears, upon tears.

    So much love from all of us to you and your family.

  29. Love to you and your family. I have sent them some train whistles. Trains were my little man's favorite. I wish I could send more. My thoughts and prayers are with your family although we have never met.

  30. Child Life is amazing. I had a friend who passed away from cancer when we were teenagers, and after years of dealing with all kinds of medical professionals, she admired Child Life most of all and felt it made the biggest difference in her treatment. It was her dream to work in that field as an adult, but sadly she never reached it. I will support Child Life thinking of her and, now, of Gavin. Thank goodness they were there for Brian.

  31. Glad to see this.Such a great idea.I have sent so much love and wishes for your family.


Related Posts Plugin for WordPress, Blogger...