Monday, April 15, 2013

For the love of a child who's gone—but who will keep on changing the world

God, it is said, works in mysterious ways. People, less so: When a child dies, we grieve deeply. We feel pain for the parents. We want to do something.

Kate's son, Gavin, has passed. It happened shockingly quickly; last week, he was a five-year-old boy with special powers who had just started dancing. On Wednesday he stopped breathing and went into cardiac arrest. On Friday Kate and her husband, Ed, made the decision to donate his organs. Last night, he was officially pronounced dead.

All weekend, I felt like I was moving in slow-mo. Kate is a vital part of my Sisterhood of Special Needs Parents. Gavin was a kid with special needs who kicked major butt. This is a child who'd gotten so much love, therapy, attention, everything. His mom is one of the very wonderful people of this world. Why, why, WHY?  

Kate has written about being comforted by the many thoughts and prayers streaming her way. Hearing about the impact Gavin has had also helps, she's said: "Gavin healed people. He helped people. We loved to call him our little 'Buddha Baby' for how he changed people with his quiet presence. Sharing parts of him is like spreading good karma and knowing that he can continue to help and heal people after his death is so very comforting to us."

And in another post she wrote: "People have been inspired by him over the years—and continue to be inspired by him now—and I know in my heart that, even in his death, that won't change."

This boy Gavin-ized people.

I often saw Max in Gavin, especially in the determination he had to push past his challenges and the way he charmed others. When Gavin helped people better understand children with special needs, it lifted me. When Kate did alternative treatments for him, it made me think harder about what I could be doing for Max. I swear, every single time I looked at that child's smile I thought he had found the meaning of life, so content did he seem. In recent days, what I've witnessed has reignited spirituality I have not felt in a long time.

Kate being Kate, on Facebook yesterday—her 43rd birthday—she asked people to participate in a project of doing something to help someone, to share Gavin's story and to ask that person to pay it forward. She and Ed will soon be announcing where donations can be made in Gavin's honor.

Gavin will live on—not just by giving life with organ donation, but because of the good he'll continue to bring to the world and the indelible impact he's had on our spirits and souls.

If you'd like, share a message here about how Gavin touched or inspired you. I will print them and others from Facebook, collect them in some meaningful way and bring them to Kate.

Rest in peace, Superhero Gavin. Much strength and love to you, Kate and Ed.


  1. I have a friend that I've known since high school. She is funny, irreverant and outspoken.

    On Saturday she posted this on my Facebook wall:
    "You had to 'like' the Chasing Rainbows page, and ever since you did I've worried about this kid for two days now, and sitting here in tears after reading the last blog. At first I thought 'Poor baby', but he was probably loved better than anyone could hope to be. This has completely cracked my composure, and my protective camouflage as a cold hearted b*tch is shot all to pieces."

    I think Gavin's story touched everyone, but my friend is right -- he *was* better loved than anyone could hope to be!

  2. I wrote about Hero Gavin here:

  3. I would like to send a song to Kate but I cannot find her e-mail address anywhere on the blog. Do you happen to have it?

    1. There's a Contact Me button on the right side, scroll down. If it doesn't work for you, email me and I will send along your song.

    2. Thanks Ellen, I found it and I mailed her. xo

  4. I prayed for Gavin and his family. I have considered myself agnostic since I was about 10 years old, but I prayed for them. I don't know if there's a god and I'm not willing to say there is not. I don't feel that if there is a god, that he/she has failed Gavin and his family by letting this happen though.
    Separate from prayer, I have seen Kate as Every Parent and Gavin as Every Son and Gavin's dad as being Every Dad. I think many of us feel that way - their story represents how much we love our children and how closely we hold them dear. I see the photos, read her FB posts and blog posts and my heart is so heavy, so wrenched, just imagining myself in her position.

    Like many, I am also wishing that I could hold her hand and give her my most heartfelt condolences and support. I also think often of Brian, his little brother, and how mysterious and hard and sad this must be for such a little boy. He's so lucky to have such wonderful parents who will make this more bearable for him. I hope they all get a chance to cry together and mourn together and find strength together, in their own time. On their own terms.

  5. So proud of Kate & Ed's decision to donate Gavin's organs especially since April is Organ Donation Awareness Month ( Their journey was long and hard throughout his brief life, but oh how the love has been shared by so many people and his organs will bring life to many more as well and then more love to those who love them. Kate really has been incredible to share her wonderful blog Chasing Rainbows so publicly and so emotionally as well. Ellen, thank you for helping her spread the blog, and for being her friend!

  6. Kate,
    I can't imagine what your world is like. But your writing about Gavin is beautiful. I'm so thankful you have opened my eyes and taught us about sweet Gavin. You opened your hearts and home to thousands of Gavin warriors. I keep shaking my head about how as you sit and spend precious time with sweet Gavin you kept all of us in the loop. You have such courage, grace and love. It showed through so well. Thank you for spreading awareness about organ donation. If ever such a event happens in my life I hope to be just a little like you and write so gracefully and with such love. Your in my heart. Your family holds a special place in my heart. Thank you.

  7. It has been through "Love That Max" that I have gotten to "know" Kate, Gavin, Brian and Ed. And, it was through your posting on Thursday that I found out about Gavin's most recent crisis, which seemed to come out of nowhere.

    When I saw Kate's request that people honor Gavin in specific ways, I started thinking about the "special day" classes in my son's elementary school. At our school, teachers have "wish lists," of things ranging from paper towels to iPads, and classes of 22-33 kids whose families try to fulfill these lists. The "special day" classes serve children with multiple disabilities (super powers?) and have 6-12 kids each. Those families are likely also financially stressed in ways my family isn't.

    So, I got in touch with the principal, who has put me in touch with those teachers. When I see what they're hoping to get, I will be fulfilling a few items myself, and then hopefully getting others to do the same.

    Thank you, Ellen, for being such a good friend to Kate.

  8. I've kept vigil in my heart for Kate and her family since hearing the news Wednesday. I've followed her blog and facebook like a hawk praying, hoping for a miracle. I was heartbroken when that miracle did not come. With every post through heart wrenching sobs, I felt for her and her story hit so close to home as my son is also undiagnosed and I really felt like this could be our story. One thing that has amazed me through it all (not only the grace with which Kate can even write through this tragedy) is the community that has been inspired by her story. The blogging and special needs communities have spread her story like wildfire and so many people have been praying and keeping them all in their hearts. I wrote about that last night

    It's definitely true that Gavin will continue to change the world without ever having said a single word. My heart goes out to Kate, And I'm inspired by the goodness that still remains in the world as her story is shared over and over and the prayers pour in as her family grieves and heals during this time.

  9. One life touched,...mine,...a dedication post to Gavin Leong.

  10. Ellen I, like you have often seen my Grant in Gavin. He doesn't yet talk, but he recently started walking around the same time Gavin did. I have enjoyed watching Gavin reach new milestones and felt the joy right along with Kate. I continue to be amazed at the strength she has shown through out his life and especially right now. I am praying for her to continue to find strength in the very difficult days that lay ahead. And thank you to Kate for sharing your little superhero with all of us. Gavin will missed and remembered...

  11. I am so sad Gavin has passed life is too short.

  12. Thank you for pointing us all in the direction of Gavin's story. It truly touched me, as I am sure it will touch all of us with children with extra needs. I pray for this family for healing at this time, and know that Gavin's memory and life has touched people he has never even met.

  13. Every time we lose one of these sweet superheroes, my heart aches. It aches with the fear that I've lived with for 6.5 years now, that one of these days it will be my turn. I've been in awe of Kate and her family and their grace through it all, and I've cried for them and lifted them up in prayer. I cannot imagine going through it, and yet I've tried to imagine it. As if that would somehow make it easier if it does happen to us.

  14. As I think of Gavin, Kate, Ed, and Brian, the word that keeps coming to mind is grace. What grace they have shown through the hardest of days, and how I hope that they will continue to be shown grace over the next days, weeks, and months. How heartbreaking yet how beautiful to know how many tears are being shared, how many prayers are being sent, how much love is being sent to sweet Superhero Gavin and his amazing family from all over the world.

  15. Like Michelle above, I was introduced to Kate's blog through your blog. Gavin's sprit was evident in his beautifulsmile and soulful eyes. What an amazing family and how wonderful Gavin will continue to be a super hero through organ donation.

  16. My heart aches for the Leong family. I found this blog and Kates about a year ago and having been reading them regularly. I have felt a kinship with you both through your amazing writings and expressions of your life. My own son has severe brain injury and cannot even sit alone. I understand the journey. I was so shocked on Wednesday when I saw Kate's post about Gavin. Just the day before, they donated her father's wheelchair to the hospital. There were pics of sweet Gavin. How could this happen? As a parent of a very special little boy, I have often wondered when it will be our turn? I am amazed at the grace of Kate and that she still kept her readers updated with all they were going through. I have been praying and crying for this family. Gavin really touched my heart and the pic in the hospital of Ed holding Gavin is seared in my memory. The love and anguish on his face - there are no words. I pray for healing for the Leong family and I hope Kate that you will keep writing to us. You are such an inspiration. I am so sorry that you are going through this. Keep the faith.

  17. I have been following your blog for years since my son was diagnosed with a brain injury/cerebral palsy and also have been following Kate and Gavin's blog. I have seen a re-post of Gavin's story by a high school friend of mine (small town Ohio) and a college friend of mine (Michigan). I am not aware that either of them are "plugged into" the special needs world. So Gavin's story must really be spreading and will carry on. Julie Lewin

  18. Dear Kate,

    I am so sorry for your, Ed's, Brian's and the entire Leong family's loss. I am amazed that you and your family are working hard to turn Gavin's passing into a motivational reminder to get out there and appreciate what we have and help others in anyway we can throughout our journey. His legacy WILL live on - generations will be touched by what you have started with your honesty and incredible thoughtfulness about others, made even more special knowing you are doing so during this unfathomable time. Your superhero has touched my life, as I am sure he has and will touch thousands of others. Prayers and hugs to all.

  19. When you have a child with disabilities, you often believe you have faced the worst possible fate that could befall a parent. All your plans are sidetracked or even trashed as you deal with doctors, therapists, social workers, insurance companies, durable medical equipment you never even knew existed, and medication or other treatments. You develop an entirely new vocabulary. You no longer have much, if anything, in common with all the parents you knew before, but you also have a new peer group of parents who can offer you the kind of support and friendship you need because your kids share disability experiences. You have faced trauma and tragedy and the unfairness of life and you realize one day that in spite of all this, you are surviving, your child is different, but not unloved. You have overcome the worst thing to happen to a parent.
    Then, for some of us, we discover there is something even worse than a child with a disability--a child who dies. In my case, her name was Sarah and it was just a month after her fifth birthday. Suddenly there was no more pre-school, therapy, doctor visits, range of motion exercises, medications or grinding up food for her meals. There is no loss greater than the death of a child, for any parent, but when that child is disabled, the loss feels even greater because it is your second loss as a parent. First you lost the normal child every parent expects, and with that, the normal existence through infancy and childhood written about in all the parenting books. You lost your place at the playground, the pediatricians, and the PTA. Now, you have lost all the new normals you created for your child, and suddenly you have become a member of a very exclusive club no one wants to be qualified to join.
    It is too soon to believe that you will be happy again, but it will happen. People will not know what to say to you. There is nothing they can say that will help, but their just standing, sitting, or holding you will help. Life will never be the same, but it will be good again, just in a different way. Your memories will sometimes cause you pain, but they will also help you heal.
    Every family handles the loss of a child differently because no solution is right for all of us. A year after Sarah died, Amber came home to live with us. She was almost 4, and she is multiply disabled. Sarah taught me how to parent a disabled child, it seemed logical to put that knowledge to good use. Amber is 35 today and still lives with me, but has a good life, like I would have provided for Sarah. It is not the solution for everyone, but it is what I chose to do because I knew it would be the best way to handle my loss and my grief.
    Gavin is not alone. I know he and Sarah have become friends in heaven.


Thanks for sharing!

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