Sunday, April 14, 2013

Gavin David Leong...

Gavin David Leong
September 29, 2007 - April 14, 2013

Our sweet son was officially pronounced dead at 9:53 this evening.  Today was the hardest, most heart wrenching day of our lives.  It was also a wonderful birthday gift to me - to know that I could birth this beautiful soul from my body on his birthday... only to usher him into Heaven on mine.

Ed and I were able to hold him this afternoon - after four long days.  I was so, so happy to have him in my arms again.
We are still here with his body.  Loving him and crawling into bed with him.  Singing to him and telling him stories.  The love we have for this child is overwhelming.
We have to wait for the organ transplant team to be ready and in place.  Surgeons could be flying in from all over the country for the precious organs that Gavin is sharing so heroically.
Once they are ready, they are allowing us to escort Gavin down to the operating room.  It could be in the middle of the night when we're called... or it could be in the morning.  Whenever it is is fine with us.  We consider it a privilege to wait.
Knowing that our son will die a hero - saving or enhancing lives - it's a privilege for us to wait.  Not to mention, we're really not in a hurry to leave him.  He will be kept on the ventilator only to keep his heart beating while they harvest the organs.  Although it sounds horrible - he truly is not alive.    The heart needs to continue beating to provide oxygen to the organs so they stay perfect for the people who are anxiously waiting for them.  I can picture a parent sitting at their child's bedside tonight hearing from their doctor, "We found an organ."  If they only knew that these are organs with super powers.  If they only knew.
Leaving the hospital without our son will be hard on our hearts.  We are anxious to see Brian... but nervous to walk into our home, which is filled with Gavin's things, and try to stay upright.  It's going to be hard.
I will soon be revealing the details of two special places that we would LOVE donations to in honor of Gavin (and in lieu of flowers) for those who were interested.  

But before that, I have a special project that ANYONE can do - that can be FREE - and would be the best birthday present you could give me.  Here is what I posted on my Facebook page first thing this morning:

Ed and I will be announcing our choices for "in lieu of flowers" donations to honor Gavin in a few days, but today is my birthday and this is all about me. I've come up with a special, totally FREE way to honor my sweet son who could inspire the most profound emotion without ever saying a word. I'm asking you to help someone... document it with words and or a photo... and place it on the Chasing Rainbows Facebook Page. Then be sure to check the page often to get inspired by the outpouring of love. Here are some great ideas for you... Find a special needs classroom in your community. These are usually low funded and always looking for donations. Perhaps you have toys your kids don't play with anymore that could be used in the classroom or during therapy. Random crayons that are laying around. I know we always needed rug gripper to place under Gavin's behind when he sat - that's a good need. Do you know a special needs Mom in your neighborhood? Church? School? Tell her you'd like to make dinner for her family. What night would work? Then tell her the only requirement is they have to give a "cheers toast" to Gavin during dinner. Help someone struggling to unload groceries into their car in the rain. Donate clothes to a women's shelter. Check with your local children's hospital for volunteer opportunities - even if it's just for two hours of your life. Save all of your magazines and bring a big stash to your local hospital. You have no idea how helpful that is to parents who spend days, weeks or months (as I did when Gavin was a baby) sitting in their child's hospital room. These are just some ideas... be creative! And think of Gavin when you do it. Share his story with the person you are blessing. Tell them that Gavin Leong changed the world with little acts of courage, determination and a sweet smile... without ever saying a word. And then ask them to pay it forward to honor his legacy. This would be the best birthday gift you could give me. There is no time frame - you could post something today or a year from now or five years from now. Thank you for helping me to honor my amazing little boy. And feel free to share this anywhere you want! 
If you don't have Facebook, don't fret.  You are welcome to share your story here in the comments or email it to me with a picture.  The idea really took off today, I was told.  It was shared all over the country...and the world.  I'm so grateful.

Today has truly been the worst day of our lives.  But it's also been an unexpected gift. Our beautiful first born son was set free.  Now he can talk.  He can run.  He is healed.  As we kissed him goodnight and wished him sweet dreams one last time...
...we realized just how lucky we are to be Mommy and Daddy  to this courageous superhero boy.

Life will never be the same. 
 



156 comments:

  1. You are an inspiration to many, many people. Your story has definitely changed my life! Thank you for sharing your story with us. I will be praying for you and your family in the coming days, weeks, and months as you grieve your sweet son!

    Maureen

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  2. Kate, as I just spent almost 2 hours putting my child to bed who has severe anxiety I was kicked, hit, spit at and so forth. I came down to sit in my messy living room and immediately checked on you. My heart aches for you but for you to know he is running around is a relief. My tears are not for me and my anxious child but for you. I'm lighting a candle for you and Gavin. The pictures are so full of love. I'm a Monkee and Monkees are praying all over for you. Thank you for sharing your story. Please keep writing. Your way with words is soothing. Thank you again and prayers coming from Minnesota.

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  3. Speechless.

    With you in the only way I know how: as a fellow human being, breathless from your pain you have so selflessly shared. So tangible you have made this journey for all of us. Praying for your ongoing healing, peace, strength, and love.

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  4. I am so sorry. :( I just found your page yesterday, but I connected right away. What a very special boy Gavin was. My prayers are with you during this very difficult time. God bless you.

    Krista

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  5. I am so sorry that Gavin could not stay...but glad that he is free and whole in Heaven. I am so sorry that you have to endure this unimaginable trial. I am praying for you and your sweet family. Thank you for your courage, your inspiration, your vulnerability. Gavin is not the only hero in your family. My heart is with you. <3

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  6. May God be with you and your family .

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  7. There are no words - my heart aches for your family. I will keep you in my heart and prayers knowing Gavin is looking down watching over you. He is so beautiful. God speed.
    Danielle

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  8. You son is my hero, as are you. I have been so touched by your blog and your love for your family. I don't know what my gift, in Gavin's honor will be but your have inspired me. I coach wheelchair tennis and my head is spinning with ways I can incorporate a gift into a passion I already have. Still thinking. In the meantime I am also thinking of you, Gavin, Ed and Brian. You are an amazing and strong birthday girl.

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  9. I am so very sorry!!! I have been praying for you all since hearing of Gavin going to the hospital a few days ago. My heart aches for you all but rejoice with you that Gavin now has a perfect body & is playing with his sister. Continuing to pray!!

    Love, Bobbie Gildroy

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  10. As someone who has very special friend who is alive today only thanks to organ donation, I thank you for giving someone else that gift. To watch a person await organs to be made available is so difficult. The guilt a person who receives an organ feels knowing it's only made possible through someone else's loss is also profound. As a parent myself, I can't imagine what you are going through, not even close, but you are both so courageous. And the love for your children is so obvious. I cry for you and wish you continued courage for when you go home and the next stage of life begins. Peace and warm thoughts.

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  11. Kristen - Eastern shore of MarylandApril 14, 2013 at 10:19 PM

    Hugs to you, and your whole family. My heart is heavy for you tonight. I just started following your blog on Thursday, and am inspired by your courage and strength to share it with the world. I hope you find peace in knowing your little Hero's Legacy will live on in others, awaiting the gift of Life....
    My 3 year old son had a gash above his lip yesterday, and after a brief trip to the ER, he was fine; but I thought of you often while I was at the hospital...... Not knowing how you persevere through this journey, and have the strength to write about it. You are an amazing mother, and a Hero, just like Gavin. No question, where he got that from. Prayers for you, for your journey home. So many people are with you today.

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  12. My heart truly aches for you. Thank you for sharing your story, I am honored to pay it forward in Gavin's precious memory.

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  13. I've sat here for 20 minutes trying through tears to type something. There are no words.

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  14. Prayers to all of you. Thank you for sharing your little superhero with all of us. He has affected so many lives. God bless you and comfort you.

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  15. Oh Kate, your little man will be so missed. Thank you for the gift of life he is giving other family's. praying for your family in this heartbreaking time.

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  16. My heart breaks for your family but yet I am deeply moved by the pure love I literally felt radiating from your words! I believe the vivid dream you had a few days ago was Darcy coming back in preparation of welcoming her brother to heaven. May God wrap his loving arms around all of you! He and all His graces will carry you through.

    Gretchen

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  17. im not sure my heart has ever been so broken and i have never met gavin or you...his sweet, sweet, brave and AMAZING mother. your courage and love is nothing short of miraculous and obviously where gavin got his spirit from. i will him. oh, kate. i weep for you and for your family. i am happy that gavid can run to his twin, to Darcy, to his Pop...and all his other angels brothers and sisters. but i still weep for everyone he left behind. stay strong. you are loved.

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  18. Prayers to all. Gavin is watching over all of you.

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  19. I've had you and your family on my mind ever since learning about you this week from a friend that knew you on iVillage back in your TTC days. All my sympathies to your entire family. You're all heros, as far as I'm concerned.

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  20. I came across your story from a post on a friends Facebook page. My heart breaks for you and your family in this tragic time. I have asked my friends to pay it forward in honor of Gavin and I will be too. My prayers are with you and your family. Heaven gained another angel today and I hope Gavin is running and playing all he wants. I know many people up there who will welcome him with open arms and watch over him. RIP sweet Gavin....

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  21. I just found your blog today and read the whole thing.

    You and Ed are amazing parents. How lucky Gavin is to have such wonderful, loving parents. You were a gift to him, just as he was a gift to you. Wishing you strength for the days ahead.

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  22. I am so amazed at the perspective you are facing today with. I pray for you again and again and hope that you, Brian and Ed are able to grieve and celebrate Gavin's life. He is an impressive little boy. And you are such an amazing woman. I look up to you so much. Happy birthday to Gavin in heaven.

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  23. I am sorry for your profound loss.

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  24. I can not imagine going though something as traumatic as this! You and your family are in my thoughts! RIP Gavin

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  25. Prayers. Love. Space.

    As a former PICU nurse, I am so proud of Gavin and his amazing family. Giving the final gift of organ donation is the most absolute blessing. He will live on here through others. Most importantly he is in heaven dancing and raining down smiles and love. He gets to meet God.

    Love to all of you.

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  26. Carrie J. from CaliforniaApril 14, 2013 at 10:30 PM

    Kate, I found your website on Wednesday and have been beside you the whole way. I found myself waking up in the middle of the night to check for updates. You are so inspiring and brave. Your whole family has touched and changed so many people. It was a true gift to let us all into your world and I feel honored. I will continue to pray for you and your family. I know you and Gavin have great things in store for us. God Bless.

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  27. I am heartbroken for your family. Our family is sending prayers to yours. I came here through Dana Neider's blog (our son is undiagnosed also) and we have thought of your family all weekend. We do volunteer for our children's hospital and for a wish foundation and we will continue to find ways to give back in Gavin's honor. Continuing prayers to you for comfort and strength during this very difficult time.

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  28. Rest in Peace, Sweet Gavin. In the Arms of the Angels, you were carried home.

    Ed & Kate... you are showing grace and strength beyond measure.

    Our sincere condolences to you. May God Carry you now while you walk through the motions of sharing Gavin's superhero organs to other children, and as you walk through your door.

    May God Bless and Keep you. Sending prayers and love.
    Lynn, Amy and Colton O'Dell
    2007 Pumpkinseeds

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  29. Kate, Ed and Brian, our family is grieving with you. Our prayers are with you for peace. Although we have never met your blog and Gavin have inspired me so much! He is such a super hero. Love to you!
    The Stanley family

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  30. Loving blessings to all of you through this excruitiating time. I am amazed at your and Gavin's continuing ability to inspire and make this world a better place.

    I will be donating clothes and children's items to a woman's shelter this week in honor of Gavin Leong.

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  31. My daughter's life was saved by the precious gift of organ donation. Her donation still beats on, almost 12 years later. Thank you, thank you, thank you for thinking of others in this tragic time that you are facing. Parents like you are truly our gift from God. Thinking of you and your family tonight.....

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  32. Gavin, sweet, beautiful, brave, boy, farewell for now. I am so sorry I did not get to meet you. Kate and Ed, sending much love to you. Gavin will live on in so many ways.

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  33. Overwhelmed with emotion for a family I do not know yet has affected me so greatly. Thank you for sharing your Superhero's story. I will be forever changed because of it. Continued prayers. . .
    Lisa in Ohio

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  34. I, too, have the privilege of loving a wonderful boy with many challenges, and I spent last night hugging Jack and crying for your loss. You inspire me with your strength. I am so, so sorry. God bless you and your family.

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  35. Dear Kate:
    I am praying for you and Ed and Brian and Miss Sara tonight. I will continue to pray for you all in the coming days and weeks, when your heart is lonely and feels empty. May your comfort come from Christ and from knowing that you have given so many families another chance. Thank you for that. Sending hugs and love to you all from the Pacific Northwest.

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  36. I am so sorry. Your boy spent his life being a gift to you and now he will help so many other with his gifts of organs. Sending love to your family.

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  37. May God lift you up and see you through this time. What a beautiful boy. He is an angel now. Your family is an inspiration.

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  38. I am so very sorry for your loss and send love and prayers to you and your family. Gavin is a beautiful boy with a bright and beautiful spirit that will inspire many, many people for a very long time. He has already inspired me to give my children extra kisses and hugs and spend time just appreciating them this weekend. I came upon your blog just last week and was struck by the resemblance between Gavin and my 2 year old, Jacob, but I was amazed by your strength and grace in this most difficult of times, and will keep reading. Many, many blessings to you.

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  39. Your family is in my prayers tonight. You have honored your son with so much grace. What great parents you are. I will perform my act of kindness tomorrow on behalf of Gavin.

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  40. There are no words. I've thought of Gavin and your family almost constantly for the past few days. The strength and grace that you've displayed during this tragic time is inspiring. Im praying for you all as you say your final goodbyes, see your precious Brian, and walk through the door into your home. It's ok if you collapse. Youre the mommy of a super hero but you are human. Grieve this loss. And then pick up the pieces and carry on in his honor. You have an army of supporters praying for you, sending their love and grieving with you. Thank you for sharing your story, Gavin's story with us. We will forever hold space in our hearts for him and cherish our babies even more because of him.
    -Stephanie from Kansas City

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  41. I am so very sorry, you are in my thoughts and prayers. Gavin has been blessed with wonderful parents.

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  42. What a birthday, to birth Gavin once again into freedom. You are brave and inspiring people. Thank you, and I will surely act in Gavin's honor, around my special needs grandson and beyond. You are embraced with spirit.

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  43. Gavin and your family have touched my heart in the deepest way. His gift will give others life, and through that will touch so many more. So so sorry for you. Your sweet boy will be missed by many.

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  44. There are no good words. I am sorry and also thank you, and thank Gavin.

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  45. I'm so very sorry for your loss. I can't even fathom what you are feeling right now. I've been on the other side of organ donation with a very close friend whose daughter was blessed with a donor heart when she was 6 months old. There isn't one day in the lives of all that know her, that we aren't thankful and in awe of the selfless gift from the donor family. I will think of your darling Gavin tomorrow as I find something to do in his honor. Rest in peace Gavin. And, may God heal your broken hearts.

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  46. Kate, thank you for your story! He was blessed to be a son and an older brother. All of you have given him joy in his life here. He now will be able to give others a chance with his precious gift. God Bless each of you!

    xoxo Jessica

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  47. I think the parents of the children who get Gavin's organs will know he is a superhero! They also will be so thankful that their children are being given a second chance and eternally grateful to you and Ed and Gavin. I hope they will pay it forward it and honor Gavin whatever way they are able as so many have today. I hope you, Ed and Brian can have a few days to just be together and process the last few days and find your new path. Thank you for sharing Gavin with all of us. We will be with you in spirit as you find your way. God bless you and your family.

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  48. I am amazed by your strength and grace. I am also so sorry for your loss. Heaven = no more sorrow and no more pain. You are giving the most precious unselfish gift to many others with organ donation. Gavin will live on in each one of those recipients and in the hearts of many. I will donate on behalf of Gavin. Hug and squeeze my kids a little longer knowing what a precious gift they are. May you and your family find peace and comfort in God's arms. Thank you for sharing. God bless you and your family

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  49. I am so sorry for your loss, i cannot imagine the pain that comes with it.
    I will keep you in prayer for sure. <#

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  50. Thank you for sharing Gavin's inspiring story with us all. It's been an honor getting to "know" him through your blog. And what a beautiful legacy, to donate his organs! I've shared Gavin's story with my friends, family, and coworkers, and all who I have told about him have been deeply touched. My family and I will continue to perform acts of kindness to remember his sweet little self. Much love to you.

    -Desiree

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  51. That is very sad and I am sorry for your loss. He is a hero. I wish you all luck and hope and pray for you. He is up in heaven watching over you. i am sure he was an angel to you when he was here on Earth and He will always be an angel. stay strong.

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  52. Glory to God! You're little warrior is free..what a glorious day it must have been in heaven. I told my sweet daddy, who lost his battle with cancer three years ago, to wrap Gavin in his arms and welcome him home. Praise God! He is whole. May the hands that welcomed your warrior into heaven be the hands that comfort you as you start your new journey. Please know that Gavin's life has touched my family in so many ways. Tomorrow we will decide how to honor his life and pay it forward. For tonight I will lift my arms to heaven and thank our Lord for the promise of eternal life and for giving if only for a short time a perfect angel to this world. Godspeed Gavin, have a blast buddy. This is the best day of your life. This is the day you are born again in the eyes of Christ with new everything...new and perfect and most importantly everlasting. Godspeed little warrior. Hallelujah!

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  53. The bravery that your family has shown through all of your trials is awe inspiring. I have a 6 year old non-verbal autistic son that I could never, ever imagine not being in my life; the good days and the not so good ones.

    I am so sorry for your loss and my heart and prayers go out to you and your family.

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  54. I hope you can feel our arms around you. Thousands of us have wept for you and your family today, while celebrating that Gavin is in a beautiful place for eternity....waiting to have a wonderful reunion some day with all of you. Thinking and praying for you all....

    Susan from GA
    (also a Monkee)

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  55. I am so very sorry. Sending you lots of prayers.

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  56. I am so sorry for your loss. My heart is aching for you, so I cannot even begin to imagine how you feel. I do not know you, but found this site through a frind of mine on Facebook. You are my hero! Your strength, grace, heartbreaks, triumphs, and losses......You have shared it ALL with people you know and people you don't know. And when you walk in your house and If you colapse from grief it is OK. From reading your entries on this website I know that you will pick yourself up, because you have Brian, and he needs his Mom. You will never stop missing Gavin, but I pray that eventually the hurt you must be feeling will lessen. May God comfort you and your family in this time of unimaginable pain.

    I would also like to wish you a Happy Birthday. I am both happy and sad that your Birthday wish was granted. When you close your eyes I hope you can see and hear Gavin singing Happy Birthday to you!

    I would also like to thank you for your selfless, generous gift of donating Gavin's organs. In my career I have worked with numerous people who have been on the receiving end of organ donation, and It is so wonderful to see someone's life prolonged and their quality of life improved thru such a generous gift. I also lost a very dear friend last year who didn't make it until new lungs and a heart were available. From reading your blogs, it seems as though the decision to donate Gavin's organs has already brought you some peace, but I believe that decision will bring you much more comfort and peace in the future.

    Keeping you, Ed, and Brian in my thoughts, prayers, heart and tears tonight.

    xoox

    Kerri (Wisconsin)

    P.S. I have honored your request to help someone. I have purchased some games and "fun" band-aids and will mail them to a children's hospital tomorrow.
















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  57. I just popped over from FB...a friend must follow you, as she too has a special needs son and posted this blog on her page.

    Though I wish this were not the road you must travel, God's ways are far better than ours, and already, Gavin is making a difference in the lives of little ones all over the country! As I fall asleep tonight, I will be praying for your family, and for the families that will FOREVER be touched by your son, and his gift. His gifts are rewriting the stories of these families for generations to come! As you wake up tomorrow, and relive today, yet somehow press on, I will pray for the peace that surpasses all understanding...I know the 'next day' is beyond difficult.

    My husband is a life changed by organ donation. When he was 25, he was diagnosed with a rare, genetic liver disorder, only curable by a liver transplant. He received that transplant in 1998 on Fathers Day. I cannot imagine what both of those fathers were going through that weekend. A son with a second chance at life, and the other father, burying his son. Because of their generosity in what was probably the darkest moments of their life, my husband lives...and thrives.

    In the next few hours, families will be kissing their little ones and rejoicing in a new organ, just as they are struggling with grief for the little one (they don't know) who gave. When my husband received 'the call' I was not there to rejoice. Rather, I was happily married to my high school sweetheart, who was an organ donor.

    It's a privilege to be a donor family, and a recipient family. Choosing to give in the darkest hour, and then loving one who received a new chance at life. Our God is so big and so amazing, and the giver of peace and life. It is my prayer that you see His fingerprints all over this trial you are in.

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  58. We are one of those families who got the call.. we have new lungs for your child... August 13, 2010 at 6:31 pm... I will never forget it. Another family in their greatest pain of their life gave my child a second chance at life. Our son is also a "no one can figure him out" kind of guy.. if I hear again your son is an enigma ... even after double lung transplant no one figured out why his lungs stopped maturing. He too like your Gavin wore hearing aids for a severe sensorineural hearing loss.. then at 12 months passed a sedated BAER with flying colors. no one can understand why.. if he had the hearing his aids should ahve caused loss. Now he is able to live life once again (since his transplant he doesn't need oxygen during the day, can go outside and play with his siblings, can go to school, etc) though we deal with intestinal issues that don't make sense, repeated operations can't figure out, and no one understands. But like you we know that God knows Luke and God understands Luke and one day Jesus will heal him (though in our selfishness we hope it isn't for a long time).
    We think of our son's donor family everyday and their daughter everyday. You will touch many families and they will think of you and Gavin (even if not by name) everyday. Your child who is a miracle, has experienced his miracle healing by Jesus has now begun touching other children through yet another miracle.

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  59. I am so, so sorry. I began reading your blog a year ago and was amazed by the love and resiliency of your family, and by how much Gavin achieved. He is a beautiful boy who makes me want to be a better person, and he is so lucky to have you for a mother. All of us out here will never forget him.

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  60. 3 years ago I lost my 5 year old daughter Amanda. I didn't handle her death with even a quarter of the grace you have. I am in awe of you. I pray you find comfort and I pray that Amanda is giving Gavin the grand tour of heaven.

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  61. I am so sorry for your loss the only good thing to come out of this is knowing that Gavin is free from pain. I spread the word about your birthday wish in honour of your birthday and Gavin's life http://nisha360.com/2013/04/day-944-kate-gallagher-leong/

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  62. So beautiful, Kate. So much love and grace in your words. May the Lord be with both you and Ed and with Brian, Sara, your mom and your extended family during this time and grant you all peace. Thinking and praying for all of you.

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  63. He is beautiful. Thank you for sharing him with us. I'm so sorry for your loss. xxxx

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  64. Jennifer McGettiganApril 15, 2013 at 6:23 AM

    Your birthday movement appeared on my fb wall today. Happy Birthday!
    I only read back as far as Gavin's 5 1/2 year birthday.
    Thanks to your wonderful & brave blogging he will live on, and his and your journey will help others, continuing his legacy of love.
    I hope to have a birthday present for you by the end of today.

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  65. My prayers are with you in this time of grief. May you find peace in know how many lives will be changed with the story of Gavin, and with the organs he is sharing. My mother is an organ donation recipient and the gift she has received from the tragedy of another is so very appreciated and **never, ever** taken for granted.

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  66. I'm so sorry for your loss. Gavin was an amazing little boy. He will live on in those whom he inspired so much and in those who will receive his organs. While this is probably the worst day of your lives, it is the first day of Gavin's new life in a world where he is truly free. I am happy for Gavin to finally enjoy the freedom he never had on Earth. Godspeed Gavin.

    I will be praying for you all to receive the comfort you need in this time of great sorrow.

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  67. I love you, Leong Family. Holding you all in my heart forever more, bathed in light. <3

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  68. Kate and family, I am so sorry for your loss. I feel as though I knew Gavin just by reading your blog over and over. Kate, you are a remarkable woman and I will pray for you and your family at this time of sorrow.

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  69. My heart breaks for your loss and I am in awe of your strength and kindness. I shared your wish on Momastery's page. These women can move mountains, and I know many will in Gavin's honor. I am holding space for you in the minutes, hours, and days to come.

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  70. Kate and Ed and little Brian,

    I am new to your journey, but have been magnificently touched. I am heartbroken for your family that Gavin has passed. I pray for God to comfort you and continue to give you perfect peace. The pictures of Gavin are soo tend and precious and will be a treasure forever.

    I follow soo many children/adults that are in need of organ transplants. You are soo wonderful to share Gavin with others and give the Gift of Life!!!

    I will be praying for your family.

    Love in Christ,

    C.O.L.E.'s Foundation
    (Caring Openly, Loving Eternally
    Sandy Daron

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  71. Kate, thank you so much for sharing your story. I am a transplant coordinator, with the same team who has been lucky enough to work with you. Even after many years of working with families like yours, I am reading your blog and going through a box of kleenex. You and your family are such an inspiration! The strength you have shown in years of loving Gavin and the generosity you are sharing now with the world... I have no words to describe it. Families like yours are why we spend many sleepless nights away from our own families. To bring some peace to the grieving, and to be inspired by the most generous people in the world. And today, I'm putting you at the top of that list of generous families. Thank you so much!

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  72. My heart breaks for you and your family. There really are no words, but somehow you say it all so bravely and beautifully. Gavin will continue to inspire people and live on through you.

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  73. I can't help it..... Even hearing so many positive things, I'm still so sad about losing this precious boy. He has touched me so deeply over the last year and a half and he will continue to. Hugs and lots of love to you guys, especially Brian.

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  74. Kate, my heart aches for you. This shouldn't be happening. I am so so sorry for the loss of your beautiful boy. I will pay it forward in honor of Gavin. You are in my thoughts.
    Billie

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  75. Kate, Ed & Brian,

    I am so very sorry to hear that Gavin is no longer with us in this world. My heart is breaking for all of you. I am sorry that you have to experience this pain after all you have been through. My thoughts and prayers to you at this time! Thank you for sharing your beautiful and inspiring Gavin with the world. God Bless!

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  76. Thinking of you so much this week. Reinventing Mommy from facebook posted your blog to facebook. I have only been following for a week, but I feel so close to you. My heart aches so bad for you guys. Thank you for keeping a blog over your beautiful son. We are all praying for you and will continue to pray for your healing. Big big big hugs.

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  77. Thank you for thinking about organ donation in this time of sadness and suffering you are enduring. I have read your entire blog over the past week and words could never express how sorry I am to read this part of your journey has come to an end. Last year I was told my daughter could not have a kidney transplant because she was “mentally retarded.” I fought, the special needs community fought, and many other parents fought against this absurd idea that her life was not worthy. Amelia will get her transplant in the next two months and I am honored to be able to give her mine. Gavin will always live on through his stories and his gifts to others! Our family will definitely pay it forward this week in honor of Gavin. You are an inspiration to me and many others walking this road less travelled.

    Sincerely,
    The Rivera Family

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  78. Hello, My husband and I stumbled upon your blog at 10:20 last night for the first time, nearly 30 minutes after your beautiful Gavin's passing. Our third child was recently still born and we are reeling from his loss. No one should ever have to lose a child or watch him suffer, let alone two. We just wanted you to know that we read almost your entire blog, cried for your loss and pain and optimism in moving forward with life. Our hearts are abiding with your family and your sweet boy and lives that the generous donation of his organs may save.

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  79. My deepest sympathies to your entire family. I am so deeply saddened by this. This past weekend was special needs Sunday at our church. The purpose was to draw attention to the special needs people and families within our church and the community. These special people are magnificently formed by the hands of God and as John 9:3 states, "the works of God are displayed through them." Gavin's disabilities were planned by God and the work he has done in his short life will live forever in each of us that he has touched. God Bless

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  80. Thank you for posting these pictures of your beautiful son as he makes his way to Heaven. He is a special soul who has touched so many people. Every time I think about your loss, I cry. It's terribly unfair. Please know that there are so many out there in internet land and in real life who are holding you in their thoughts and prayers. I never met Gavin, but I feel as though I know him through your lovely words and pictures.

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  81. I'm sitting in front of the computer sobbing. This week will be Gavin's week for me. I promise to go out of my way to help others and give unabashedly. I'm so so sorry for your loss. Prayers to you from VA.

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  82. Anonymous
    My 9 year old "special" child died 38 years ago, and your story about Gavin brings it all back, and I am crying for your loss and for mine. Both "special" boys can walk and talk, but the love they received here on Earth was "special" too. God bless you

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  83. Right this minute I am beaming love to you and your family from where I sit in Montana. I pledge to help others in honor of Gavin.

    with love,
    Nici

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  84. You don't know me. This is the first time I am visiting your blog. But I am sending you love and prayers today.

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  85. I am a Monkee from Columbus, OH and was introduced to your beautiful family by Glennon. From that moment forward I have been saving space for you, your husband, Gavin and Brian - and I won't stop. My heart simply aches for you and for the loss of your perfect boy. May his superhero spirit shine on you from Heaven and give you comfort now and in your difficult move forward. As for Gavin, he clearly was a superhero, and I'm thrilled that his life served to create a small army of G superheros - those who will share a part of Gavin's body as well as those forever buoyed by his unrelenting spirit.

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  86. You are and will always be a mom of a superhero and a superhero yourself. My thoughts and love are with you and Ed and Brian and Gavin especially as you go through this painful time.

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  87. Oh, the sadness. I have to compose myself. What a beautiful boy and family. I am imagining the hope Gavin is giving to the families of those who will receive his organs. What a gift, and legacy. What a difference he has in his life, and death.

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  88. Sending love, tears and hugs. Your sweet angel will always be with you. Strength and peach for you and your family.

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  89. Longtime lurker who has followed your story for ages. Kate, you and Ed have a beautiful son. It's incredibly brave of you to allow him to help the world even as you have to say goodbye. I am so sorry for your loss. Thank you for sharing Gavin's story with us. Love to both of you and to Brian.

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  90. My heart is breaking for you. I am so sorry for your loss. He was such a beautiful boy and you are such a strong, beautiful mama. My thoughts and prayers are with you and your family. I have been praying for you since I heard about you from Glennon. Much love - Amy

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  91. One life touched,...mine,...thank you for sharing your son with the world,...love and prayers and kind thoughts being sent your way.

    Dedication post to Gavin has been published on Round Rainbows and Other Realities

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  92. Sending you love and light and hopes that you will find peace despite your incredible loss. Your family is an inspiration to us all and I have been so moved by your posts on your blog.

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  93. Rest in peace, sweet Gavin.

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  94. Kate, I'm so sorry. I am a Monkee from South Carolina and read your story from Glennon's site. Words cannot express my sympathy but praying for God to comfort and sustain you.

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  95. I too am a Monkee, from Vancouver Washington.

    There are no words to comfort you in this time, so I won't even try. I can't imagine your feelings, your pain.

    The gift you are giving so many others with Gavin's organs is overwhelmingly generous, kind, and selfless. Thank you for helping others sustain life, as you are facing death. He will live on in memories, but also in every breath so many others will be able to take.

    Please continue to update, as time and emotions allow.

    Much love from all of us.

    Julia

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  96. I am deeply saddened for your loss. I gave birth to micropreemie triplets on Jan 12, 2008. Our son Andrew passed May 22, 2008. As I sit here and and see my two surviving 5 yr olds, I sigh in relief that God is lending me them for a while longer. You're right. Life isn't the same and never will be. I was told by one of my son's Physician that we "as a couple" would never be the same. We would have to fight to stay married. Its true. We later questioned decisions we made for Andrew, even though they felt right at the time. There were alot of feelings of guilt and anger, and we looked to blame someone. Truth is..It's no one's fault. It was his time to go. He was freed from his broken body too. Please cling to each other and God during your upcoming grieving days and years. This journey is going to be much harder than Gavins first five years. sending you Love and Light.

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  97. Prayers to your family. Rest in Peace, Sweet Gavin.

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  98. I am heartbroken for you and so sorry for your loss. I lost a daughter at 23 weeks to heart defects and seeing your pictures and reading your story just shatters me. I am so in awe of you and your family. Thank you for sharing your story and your son with us. I wish I could say something to offer comfort and solace, but my thoughts and prayers go to you during this time and my tears.

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  99. I found you and Gavin through Glennon. I am so sorry for your loss. I am going to do something for Glavin today. Thank you for sharing this part of your beautiful love story.

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  100. That you are giving joy and hope to others through organ donation in your darkest hour is a beautiful thing. God bless your precious and perfectly created boy as he enters the kingdom of heaven. Prayers for all of you who love Gavin.

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  101. My heart hurts so so so much for you. This puts life into perspective.
    You are such a graceful person... to have the heart to think about the joy that the families of the recipients of your son's organs will feel when they get the news is such a graceful & empathetic thing to do. To have that clarity is amazing. Your son is a true hero and has touched so many lives. Big hugs to your entire family as you go through this incredibly difficult time.

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  102. My heart is aching for you and your family. What an amazing mother you are. You gave Gavin the most incredible life. There is a reason God chose you to be his mother. You really inspire me to be a better mother to my kids. If mere words could mend your heart I would say those words to you right now. But please know that a stranger in Utah is praying for you today.

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  103. Thinking of you so much and sending healing thoughts. I love love love your idea for something people can do to help others in honor of your son. we have one biological special needs kiddo and adopted a second special needs kid. I will hug them both extra tight today in your honor.

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  104. Blessings and prayers to you and all Gavin's loved ones today. I wish you comfort and strength as you move through the journey. You are truly inspiring.

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  105. Your strength and courage is amazing and Gavin was so lucky to have you all as his family!!! God Bless you in this journey and know that he is with you wherever you go!! Prayers and love flowing to all of you!

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  106. I am so sorry for your loss. So sorry. I am going out, tears in my eyes, to wander and be directed and look for someone that needs some help in your son's name. Thank you for the opportunity to serve.

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  107. I am so very sorry for your loss of your precious Gavin. Thank you for sharing him and your family with us on your blog. God bless you and your husband and sweet Brian. You are in my family's thoughts and prayers always. Acts of kindness inspired by Gavin will abound! xoxo

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  108. I only came across this because a facebook friend posted it. We don't know each other and will probably never meet, but know that you have my prayers. Heaven certainly has another angel!

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  109. Thinking of you and your beautiful family and sending prayers up for peace, comfort, courage and strength for all of you. So many are holding you tight in their hearts in the simple hope of easing even the teensiest bit of your pain. Gavin's was, and will continue to be, a bright light for so many of us.

    "Sometimes our light goes out but is brought into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light."
    ~Albert Schweitzer

    Thank you, Gavin.

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  110. "We are anxious to see Brian... but nervous to walk into our home, which is filled with Gavin's things, and try to stay upright. It's going to be hard."
    It will be hard, and when we were told my daughter's cancer was terminal, I wondered how I would ever live our house without her. But now I wonder, how could I ever not? Her things bring me comfort and I always feel she is close to me here. I hope that is how it is for you. Your kindness project is a courageous undertaking at this point in your journey, I completely understand the need to make this mean something poistive, but it is so ok to just grieve too. Hugs from across the world.

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  111. Love and tears and hugs and prayers. Praying for you on your birthday and beyond. Praying for Gavin every day on my birthday (which is the same day as Gavin's, September 29.)

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  112. Prayers to you and your brave family. I'm a stranger but share motherhood with you. Your blog has been life-changing for me. Thank you for teaching me appreciation.

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  113. They know, they really really know… the mommies and daddies of the lucky children who get a precious gift of life from Gavin know, without a single doubt, that he is a superhero. To them, he is and will always be part of them and their personal hero. My heart aches for you…it aches. Please know that you have an army of women and men, mommies and daddies, aunties and uncles, grandmas and grandpas, who wish they could be there to hold you as you walk out of that hospital and as you walk into your home filled with Gavin’s things. I hope you can feel the love we are giving out…that love is a reflection of what you have allowed us to witness in your own life. Thank you for sharing and thank you for allowing us to love Gavin too. He is a superhero.

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  114. Many prayers to Kate, Ed and Brian. Rest in peace Gavin. You are a true superhero.

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  115. I found your story through Momestry, and it has truly touched my heart. Your Gavin is a warrior. Thank you for sharing your story, you, your husband, son and family are all in my prayers. I look forward to your post about how we can help others in Gavin's memory. A good friend of mine suddenly lost one of her 6 month old triplets, Owen's organs were donated as well...it is a source of such pride for Mel, a final act of warrior courage - I will also pray for the families of the organ recipients that those children will live long and full lives with Gavin's superhero spirit.

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  116. What a wonderfully brave and selfless family. I will certainly be doing something to honour Gavins memory. God bless xx

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  117. There is a special place in this world and in Heaven for parents such as yourselves. You are brave, courageous loving and selfless, and God knew how long Gavin's time on Earth would be and chose you as his very special parents as he knew how fantastic you are. Lean on God and on each other and know that from afar we are all holding you both up in prayer in addition to your whole family. This is so hard, your courage and grace is exemplary. God Bless you and all our love comes your way.

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  118. I haven't been able to contain the raw emotion that has overpowered me at work today. From every photo, to your beautiful words, my heart is completely consumed with a mother's love for her little boy. And your husband, oh the photos of him are so powerful. God gained a sweet little angel, and his exit from this earth was full of so much warmth and love. I love you guys, I love Gavin, and I don't even "know" you, but I feel so connected. Thank you for sharing your story - its impact is so deep, I can't even explain it.

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  119. Praying for you and your family. Gavin will continue to touch and change lives and so will you. Thank you for sharing your story with us.

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  120. Kate and Ed, I am so sorry Gavin died. I ache to think of the time between now and when you will again be reunited.. and of the days in between that you wish to hold him. I know he is free and that is joyous, but you are here. There is joy in that too but it appears to be more cloudy. Your children are truly blessed to have such attentive, loving parents. Your dedication to them is unparalled as is your authenticity in documenting your life. You teach me so much about living, loss, perseverance, love, kindness, acceptance, joy, despair, humor... Kate, you are a gifted writer and communicator. Please continue. I would love to see your story turned into a book as you are a great teacher. I believe we are here to serve and support each other. You have laid out a path that is real and inspiring. Life is messy but that doesn't mean it isn't beautiful. Thank you for exemplifying that. I pray for you all.. strength and peace. God bless you!

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  121. Praying for God to continue giving you the kind of strength you have been receiving to walk the path set before you. My husband and I had problems conceiving, and 22 years ago, after finally being able to conceive and enjoy a "perfect pregnancy," we learned at 34 weeks that our beautiful Courtney Grace had died from her umbilical cord "kinking and twisting tightly," cutting off the needed nourishment. I delivered her the next morning after 5 1/2 hours of labor. As you said in one of your blog entries, there is nothing worse than a quiet delivery room. You have certainly walked a longer and more difficult road, but my husband and I understand the depth of grief that comes with losing a child. How wonderful that Superhero Gavin was able to touch so many lives in his short time on earth, and how wonderful to realize that he has seen the face of God. You will never "get over" your loss, but you will get through this. Walk with God, one step at a time. Praying for you from SC.

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  122. I cannot imagine what your family is/has/will be going through with Gavin...my heart absolutely breaks for you all. There is nothing at all to even say other than that your courage and strength are beyond human measure and we are all right there with you --weeping, grieving and praying for you. Prayers from Wisconsin

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  123. Kate and Ed, I am so incredibly sorry for your loss. I have been praying for all of you day and night. I cannot imagine the depths of your sorrow as you bid your precious Gavin farewell but I am so very gratefull to you both for sharing him with us all. Your grace and courage are an inspiration to me as a parent and I promise to find a way to honor Gavin so that everyone will know about your superhero and so that his beautiful light will continue to shine here on earth as it does in heaven. God bless all of you.

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  124. God Bless you, I too have an Angel, Melissa in Heaven, I know Gavin and Darcy are together, laughing and playing in Heaven. May you find comfort and Peace to know they are together in a Better Place.

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  125. Sending my deepest sympathy on the loss of your precious Gavin. He fought through his challenges with such strength & determination. I hope his wonderful spirit & loving memories will bring you comfort in the days ahead. Stay strong - your family is such an inspiration. Lisa McDonald, Newfoundland, Canada

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  126. May God be with you and your family. I will certainly honor your birthday wish and post about it soon. From one mama to another, my heart goes out to you and yours. I can't imagine what you are going through right now. You are in our thoughts & prayers and may God's love enfold you in your grief.

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  127. I ache for you. Yet I know that there is some happiness in this, in that your baby is free. He can walk. And talk. And play. And laugh. And smile. Free above us. He will be with Darcy and his twin and his other brothers and sisters and will tell them all about you three. He will talk about how he had a brother who made him crazy, in the best possible way, a daddy who was brave and strong, and a mommy who loved him more than any love, anywhere, anytime. A mommy who I someday, The Lord willing, I will be 1/3rd of. Kate, we love you and yours. Even from across a keyboard. And we pray for you that you find peace.

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  128. I bowed my head and cried hard sorrowful tears. I have dedicated my life to early childhood special education and have taught so many "superhero's" and become a part of the lives of families who have young children with special needs. It is these children that have brought so much love, happiness, and purpose to my existence. I cry for you as a mother but smile about how much joy, love, and purpose Gavin brought into the lives of others. RIP angel!

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  129. Only god can grant life and for a day you as parents get to do this also. Thank you from a far for sharing your Childs life and body.

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  130. Rest in peace, brave superhero Gavin. Thank you for the lives you are going to save, and thank you for being such an inspiration.

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  131. I am weeping for your loss and weeping because of your selfless decision to see beyond your tragedy to give hope to others with the gift of life. My life was saved by an organ donor on 5/7/12. There are no words to describe how thankful I am for my hero. Not a day will pass when your son is not remembered with a thankful heart. My prayers are with you.

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  132. My heart breaks for you yet I am truly inspired by your strength to cherish every moment. You are in my prayers.

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  133. My heart breaks for you and the pain you must be going through. Yet I am in awe of your strength . It is inspiring . Your son was beautiful and has touched me . I can't stop thinking about him and what you are all going through . Thank you so much for sharing your beautiful family . Prayers and love.

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  134. My heart is so heavy with your pain. You are an amazing Mom with an amazing son and family. I am so touched by your ability to always find the silverlining even in the unthinkable. While battling breast cancer myself I sat in the hospital for 6 weeks awaiting the gift of life for my mother who was awaiting the donation of lungs due to a rare lung disease. We were blessed with this gift and my mother received her lungs and has played for 3 more years with my twins - years we would not have had without this great gift. Recipients will reach out via a letter through the hospitals to thank you and you will have the opportunity to share your Hero's story with them which will mean so much. You are so amazing and inspiring. I will be reaching out to pay it forward in Gavin's honor soon.

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  135. Kate and Ed, Like many I just found you this weekend after a friend shared your blog. I cannot begin to express how sorry I am for you both and your younger son and the rest of your family. I am so amazed by the courage, grace, strength, and generosity that you have shown through this most difficult time in your life. You are both truly an inspiration to so many. I hope that you are able to find some peace and solace at this time and that you can help support one another. I truly believe that Gavin will always be with you and some day you will be reunited.

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  136. Gavin is a beautiful soul, as are his mom, dad, and brother. Our thoughts and prayers are with you all.

    -Geoff, Elayne, Ali and Drew

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  137. I am so sorry for your loss and will pray for your son and your family. Your grace and the love you show your son inspires me to want to be better mother. G-d Bless you and your family.

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  138. I am so incredibly sorry for your loss. Your family is in my thoughts.

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  139. It is a rare gift you grant us by welcoming us into your most intimate grief. My heartfelt condolences. I simply cannot fathom so great a loss as yours. May God's peace sustain you in the days to come, and all the days thereafter.

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  140. I am sooo incredibly sorry for your loss. You guys are some pretty amazing people and i can only hope to be as strong as the both of you! In the 2nd picture of mommy and gavin...and the 3rd picture of daddy and gavin he has a blue halo above his head. Precious little boy is an angel!

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  141. You are all my personal heroes. I pray for peace and comfort to saturate your souls. What a gift that your precious, inimitable Gavin was entrusted to you raise him and love him so perfectly and make the very most of his life here. Rest now, little one, in the arms of Jesus. We love you. (And I will follow through with your modest wish.)

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  142. My heart aches for you and your dear family. I pray that you will all find the strength and love in God and all your loved ones surrounding you. I cannot hold back the tears when I see your loving pictures and read your heartfelt words. Know that your family and Gavin has truly touched and inspired many people. You should be so honored to have raised such a courageous, brave and loving son. You are now blessed with an angel. He will always be with you.

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  143. keeping your family in my thoughts and prayers<3 RIP

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  144. A hero, an inspiration, and certainly one who has changed the world. And thank you, Kate, for your beautiful words and your heartwarming, impacting perspective. What a blessing to the world.

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  145. My son shares Gavin's birthday. He will be one this year, and I've decided that every year when we celebrate, we will celebrate for Gavin as well. As Jacob, my son, grows I will tell him about how brave Gavin is and was, and I'll teach him to love everyone equally. Your story has inspired me to be a better parent and to not only love my child, but to be sure he knows he's loved. Thank you for sharing Gavin, and Brian, with us. <3

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  146. I sit here in tears, reading this story. I am so sorry for your loss, for what it is worth. As a mother of a 7 year old I can't begin to imagine the pain and heartbreak you are going through...at the same time how proud you must be to be abloe to help little angels live to see another day. Again, my heart is with you and your family at this time.

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  147. I came across this blog from another blog of someone I've never met. You and I have never met nor do I expect us ever to meet, but I sit here in tears as I read your story and the courage you, your family, and your sweet little superhero Gavin have shared. I thank you for touching lives of so many that you know and that you may never know. As a parent and an employee of a non-profit that works to help individuals with disabilities, I praise you for helping me strive to be better at both those roles. I pray for comfort and strength for you and your family and I am comforted knowing Heaven has an extra special little angel whose life has touched someone hundreds of miles away and so many others. I thank you! I thank Gavin! Much love from Florida!

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  148. Just came across your blog, I am so sorry for your loss. I don't know your story so I'm going to read from the beginning. I can't begin to imagine the pain you are feeling. You are in my thoughts and prayers.

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  149. In honor of Gavin our family has donated much needed art supplies to Mrs Prestias class at the Pathway School. Mrs Prestia is the teacher in our son Colin's special education class. The students were so excited
    Now because of Gavins legacy they can draw paint and scribble and dream.
    Prayers for peace and comfort to you and your precious family.
    Maureen Gavaghan Arnold
    Chalfont

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  150. In honor of Gavin, I chose to donate $50 to the Heather & Liam Connection for Autism. Heather is a former classmate who passed away 5 years ago in a car accident. She had a special gift to work with students with autism, especially a boy named Liam. Her mother established this charity to raise money to buy iPads for other "tangled" learners in my hometown in northern Maine. I may be a relatively new reader, but I'm completely inspired by little Gavin and all the ways that total strangers choose to honor him. my little boy also has CP and puts a smile on everyone's face, no exception. Holding space for you and your family through this difficult time.

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  151. He was beautiful. My heart is with you. Thank you for sharing your family's story of bravery. You all are in my thoughts and prayers. May your souls be comforted in this time of great sadness.

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  152. That was beautiful and touching. I am so sorry for your loss, words are not possibly enough. He is doing something amazing with his organs, so many people will be helped. So many.

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  153. Even though it's been months, I cry as though he just left. He truly was a superhero. The things I've seen him do through all your posts...He was truly amazing. Thank you for sharing him and the rest of your family with us.

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