Thursday, April 18, 2013

A Meeting Orchestrated From Heaven...

I've been feeling like I'm starting to sink... sink into the depths of despair and sorrow.  My anxiety has become so bad I am now on medication to help me walk through the days and be present for Brian.  And we are present for Brian.  He needs us.  Ed took him out before dinner last night to "Love Bomb" him.  They went to Arnold's Family Fun Center, where Brian reminded Daddy was the place we all were just recently for Gavin's "Half Birthday" celebration.

He bounced in bounce houses and went down huge blow up slides and played duck pin bowling.  It was good for both of them.  With me at bedtime, after our book, I walked to the door to turn off his light and I heard, "Oh!  I forgot!"  He jumped out of bed and walked over to the little plastic heart that he made at the hospital that hangs on his closet door by the "invisible string."  He shook the heart, gently tugged the string and whispered, "Good night, Gavin."
I'm not sure how I'm going to do this.

The planning is good and bad.  It keeps me busy, but then I suddenly feel like I'm drowning in decisions and plans.  I was so grateful that some of Ed's former co-workers took over handling videography for us.  They will even come up with a way for me to share it all online for all of you at some point in the future.  And I have a wonderful woman that will be taking the programs off of my plate.  I'm feeling a little lighter this morning.

But there are some things that bring me a lot of comfort.  As I see (or am told) about the incredible impact Gavin's story has had far and wide, I feel so proud.  I have always thought that Gavin was sent here to teach and change people.  And I can say for certain that he accomplished his mission on Earth.

As you know, I was completely devastated when I learned that Gavin's liver wasn't able to be transplanted in that little "three year old boy from Texas."  I worried so much for the Mom of that boy as well as the boy, himself.  Although it's customary in organ donation for them to give very little information about the donor and recipient - I do not think it was a mistake for them to tell us the age of this boy and the state that he lived in.  I am one that thinks nothing is by accident.

I went back and forth for a while deciding whether I should share this.  I am not, in any way, looking to get anyone in trouble.  When I weighed the pros and cons, I felt the good outweighed the bad tremendously if I did share it.  Organ donation is very important to us, for obvious reasons, and by sharing openly our journey I hope to inspire people in a lot of ways.  I hope people are inspired to sign up to be a donor (which you can do here:  http://www.donors1.org/registry/ )  I also hope that it changes people's perspective around organ donation.  But one of my greatest wishes is that donors and recipients - past and present - are offered a special glimpse into the other side.  There are high emotions on both sides - and if I can help lift some of the burden off of the hearts of either side, my job will feel complete.

With all that said...

The other night, still numb from hearing about Gavin's failed liver transplant, I sat in bed and looked at my personal email.  I sighed when I saw there were over 400, knowing that I'd never get to all of them. At least not that night.  So I scanned down the list and felt my heart stop when I saw one with the subject line:  

3 Year Old Liver Recipient Family from Texas 

As I read the letter, tears streaming down my face, I felt the burdens of the failed liver transplant lifted from me.  I was so grateful for this beautiful letter - profoundly changed, actually.  I had been so worried about this mother and her precious three year old son - so her email was such a comfort.  And, after speaking with my new friend, the mother of this three year old little boy, we both decided that it should be shared.  Our hope - both of us - is that it will help more people who are traveling the emotional journey of organ donation.  That it will bring hope to people.  And, probably most importantly, that it will raise awareness and encourage people to become donors.

With so much love and respect, allow me to introduce you to my new friend - the actual mother of the "three year old little boy from Texas."  (I removed all names)


I’m not quite sure how to start a letter such as this but I will try my best. Forgive me in advance if the words fail me as I’m not even sure there are any “right words” to use.
I believe we may have been your son’s intended liver recipient yesterday.
We have a 3 year old little boy who we found out about a month ago has liver cancer (his twin had the same cancer 2 years ago).  We live in Dallas, TX and yesterday morning around 7:30AM, we received the call we had been waiting for; there is a possible liver donor match for our son. Within 30 minutes, we were driving to Houston in preparation for a possible transplant surgery.
Before I say anything further, I want to express my sincerest condolences for the loss of your son.  I do not know you, but as a parent also dealing with a chronically ill child, I can imagine what a long, difficult journey this has been for you and your family.  I read just a few of your most recent blog posts and I take comfort in knowing you have so many people surrounding your family with support and love.  I hope the love you are surrounded with helps comfort you during this tremendously difficult time.  It sounds like your family has been through more than your fair share of turmoil and yet, I can tell by your eloquent words, you have handled it all with dignity and grace.
I had received the link to your blog this morning from a friend through Facebook who put two and two together. I have been thinking about your family all day.  It sounds like from your post, you knew it was intended for a 3 year old little boy in Texas.  All I really know is the surgeons flew out to Delaware and upon further evaluation, the liver could not be used.  They never supplied a reason why.
My son has quite an extensive medical history in his short 3 years (liver cancer is just the most recent diagnosis). He was a previous 25 week twin born with chronic lung disease and came home after 9 months in the NICU, trached and on a ventilator. But, that is not the real intent of writing this letter.
I wanted to let you know, whether we were the actual intended recipient yesterday or not, that the decision your family made in the midst of your grief and own personal suffering is amazing. Other words that come to mind are: Inspirational. Courageous. Brave. Selfless. Beautiful. Beyond generous. A true gift. In fact, the best gift someone can ever give; the gift of life.  I read you are holding out hope that Gavin’s kidneys could be used.  I will pray for that gift to happen since I can see how much it meant to your family and I understand what it can mean for the recipient family.
Even though we did not receive a liver yesterday, you have given another gift in its place.  A gift of hope and understanding.
I would like to explain. I was devastated when I learned of my son's cancer diagnosis.  My heart, shattered into a million pieces.  We had already fought so hard, so valiantly, over the last 3 years to get our two boys healthy. Then, when I learned a few weeks ago he would need a child liver donor to have a chance at his own survival, it was a double blow to my already broken spirit.  I cannot quantify how many hours of sleep I have already lost, knowing when we get the call for his liver, it means another family has lost their precious child and has made the ultimate sacrifice.  I have been guilt-ridden for weeks over the thought of what saving his life will mean for someone else.
But, after reading your blog, the guilt I had been carrying around is a little less. The heavy burden I was carrying around, a little lighter. I understand and can see the perspective of a donor family so clearly now. The pride you feel towards your child and the honor it is to be able to provide such a gift.  Thank you for sharing your story so openly, so completely. If you had not, I would never have read what I did this morning.  In time, I may now be able to obtain a new level of acceptance and appreciation for the process I could not have gained anywhere else. So even if this is all total coincidence, I still learned a great lesson today. If we were the intended recipient, please know just the gesture alone meant the world to us. We just were put on the liver transplant list 6 days ago so he has time for another potential match.  We were warned ahead of time there is a chance we could get the call and then the surgery might not happen.  I tell you this so you know we are ok. It sounded from your post you were genuinely concerned about the recipient family. If I can help ease your mind even in the smallest way, I wanted to reach out and do so.  
Please do not feel the need to respond in any way.  Please focus on your family and healing during this difficult time.  I just felt compelled to let you know that if we were the intended recipient, even though the surgery itself did not happen, you have inadvertently helped me more than you can possibly know. I do have continued hope that one day there will be a match for our son and you have provided me insight I may have not gained otherwise.  I have hope that there are other wonderful families like you out there in the world and that one day, I can share with him what incredible, selfless people we have met during his journey to recovery and remission.  
The organ donation process is set up to protect identities so internet sleuthing and meetings like this won't happen.  But to be honest, I think this meeting was supposed to happen.  I truly believe it was orchestrated from Heaven by my sweet and generous son... his way of continuing to help others and save lives.  I am so grateful for this chance meeting and the impact I know it will have on the world.  Thank you, Gavin.
Please, in Gavin's memory, remember our precious "three year old little boy from Texas" in your thoughts and prayers.  We are rooting for you!!







42 comments:

  1. I recently stumbled across your blog and FB page and I am floored and humbled by your eloquent words and tributes to your amazing sons...
    I am a pediatric nurse-parents like you and children like Gavin make my job so fulfilling. I wish I could reach out and hug your entire family, I am so very sorry for your loss.

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  2. WOW an amazing story and letter, thank you both for allowing it to be shared

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  3. Gavin is working his superhero magic from Heaven above indeed! What a beautiful gift. Praying your journey here on Earth without him will be easier with small miracles like this.

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  4. Wow...just wow. A chance meeting truly meant to be. <3

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  5. Oh I am sooo thankful you got that email from her! God is good. Continued prayers for all of you.

    Krista

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  6. Another wow indeed! Definitely Gavin doin' his thing from above!

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  7. Absolutely amazing. Grace at its finest - from two awe-inspiring women. My prayers are with both of your families.

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  8. I just know this was Gavins gift from above to hopefully give him mummy some peace that the Texas family are ok. There really are no chance encounters. Sending you all my prayers for the tough days ahead.

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  9. Gavin is a superhero in so many ways, but so are his parents. Making the decision to donate his organs is the most wonderful gift. My husband received a heart 17 years ago when he was just 19 years old. Because of an amazing family like yours, he went on to marry me and create two beautiful boys. It is a gift, just like the mom of the 3 year old recipient shared, to hear the other side of the story. We never found out who my husband's donor was. We wrote a thank you letter and it was delivered anonymously through our transplant program. April is Organ Donation Awareness month and tomorrow, April 19th is Donate Life Blue & Green day. I will wear blue and green tomorrow in honor of Gavin!

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  10. I just came across your blog and read through some of your story. I am so sorry for all of your losses, especially your most recent loss of your sweet Gavin. Our twins were also preemies born at 25 weeks and we lost one of our boys at birth. Your story is incredible and what an amazing, selfless gift to donate your sweet boys' organs. I can't even begin to imagine what you have been through or what you are going through, but thank you for sharing your story.

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  11. Wow, what a beautiful, awe inspiring post! Prayers for both of your families.

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  12. Mom with 3 yr old boy.....praying for your family as well

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  13. I stumbled upon your blog on Monday, hearing of your loss of your superhero son, Gavin. I'm amazed and in awe of your strength and have posted your blog on my facebook page to share to others. Every moment that goes by, you have another follower and support for you and your family. I wish you peace, comfort and more strength to get through everything. *HUGS* from Des Moines, Iowa!

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  14. I just recently found your blog, and I'm just so heartbroken for your beautiful family. I was trying to catch up and saw that you lost Darcy at five and a half months, after five and a half days in labor, and got to hold her for five and a half hours...and now Gavin, just fresh from his five and a half year birthday celebration. In honor of your family, I want to do five and a half things from or inspired by your "in lieu of flowers" list. The "half" one will be half because I want to do it with someone else (who I'll encourage to do another five things). I just want this meaningful number not to only be associated with sadness to you, but also hope and community and support and love. I'm so happy you've found so much of that already, and just want to keep that going.

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  15. Both of you are outstanding mothers. You are the example of what a mother is meant to be and you both show such grace and compassion and it's amazing. My friend was the recipient of organs and I know that somewhere in the process they can both agree to share information? She doesn't know who her donor is but she made it clear that if they ever wanted to know about her, her information is available. But I hope that people are made more aware about the benefits of organ donation, and I hope you do get to see the good Gavin's gift has made on others.

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  16. Gavin's super powers are even more amazing now. It is another example of that invisible thread...reaching out to two mothers that can really use the connection.

    Praying for both of you, as well as your family and friends. God is indeed good.

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  17. Dear, darling Kate...

    It's been a long grueling week for you and for all of us, your devoted readers whose hearts have been bleeding along with yours. I didn't write a message directly to you yet because I figured you were flooded and overwhelmed. i'm not even sure you'll get to read this anytime soon, and I'll keep it brief. let me just tell you this:

    Everything that you're experiencing is normal. Just let the five stages of grief happen naturally. Denial is one stage you never were on, but it can still happen, who knows. Anger, bargaining and depression can happen all at once, and let it flow over you as long as it takes. Acceptance will come eventually. Don't rush it.

    I also highly recommend, when things calm down and after the funeral service is over, that you join a bereavement support group or at least go for some individual therapy. This was a massive, indescribable loss, and I really don't want you to fall apart or not have the tools to deal with it. I have not stopped thinking of you all week. I've been dreaming about Gavin and about you on many nights. I have shed many tears for you. My most fervent wish for you is that God helps you through this and gives you the tools you need to get through it.

    In Judaism, following a funeral of a loved one, there is a one-week mourning period called Shivah. The immediate family members spend a week sitting on low stools, don't change their clothes, don't groom themselves or shower, and accept visitors for a full week, talking about their loved one, letting all their grief out. It's so therapeutic and cathartic and the kindest set of rules ever. It helps with the closure and the grief. I wish there was something similar for you; the visitations and funeral should help a little, but if it's not enough, at least talking about Gavin, writing about him, and maybe going for some therapy should do it.

    ((((HUGS)))) I wish you nothing but the happiest times ahead and as much strength and grace to get through this wrenching time. My heart is with you all the way. Love you.

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  18. Speechless. Gavin knows what his mommy needed and what the mommy of the three year old in Texas needed as well. Im so very glad that she reached out to you! I continue to pray for your beautiful family. The story of Brian pulling the invisible string to say goodnight to his big brother brought tears to my eyes. What powerful love he has for Gavin and knowing he is just a string away from him must bring him so much peace. God bless you, Ed and Brian.

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  19. As I continue to read all of the goodness you have brought out in people, during such a tragic time of your own, I am reminded of the poem "the beauty of holland!" Your gracious giving spirit is inspiring. Although this is not the road you planned to travel, you have chosen to stay strong and positive and pay it forward. Never stop chasing rainbows, although I believe your little Gavin was, and always will be, the pot of gold at the end of it!

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  20. That is so incredible and truly was orchestrated by Gavin, for sure! I want you know that I have taken to heart your birthday wish. Every morning when I wake up I ask myself what can I do today to make a difference. How can I help someone today, in some way, in memory of Gavin... I have been trying to do something every day, even if it is a little something, even if it is something I may have done before your request, It has new meaning now. Today at the grocery store I helped an older lady unload her groceries and returned her cart. Then I looked up to heaven and thanked Gavin. Yesterday, while out with my kids, I parked my car and paid my meter. Then I walked down the entire length of our Main street and put coins in each meter, until I had none left. Then I looked up to heaven and thanked Gavin. I will continue to do these things every day and I will continue to thank Gavin for reminding me to be so grateful for what I have and so grateful for the ability to do good, to help people and to make a difference, even a small one, in someones life. Thank you Gavin (and Kate) for inspiring me. Love you and cannot wait to help you celebrate Gavins life on Tuesday.
    <3 Cyndi

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  21. Wow. So beautifully written on both ends.

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  22. You deservered this gift. I am so glad that this mother reached out. I completely understand the privacy around organ donation, but it is hard for the donor family to not know. You are honoring Gavin so beautifully. It is a privilege to honor him with you.

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  23. There is no doubt whatsoever in my mind that Gavin orchestrated that meeting. He wanted to give peace to two very strong mamas who needed some. What an amazing gift Gavin has been, and will continue to be. My heart is with both of your families.

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  24. I have no words. With all my love, Anna

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  25. I have been following your blog for awhile and have been afraid to post. Afraid that I wouldn't know what to say or that I might say the wrong thing. I can't even begin to imagine your strength or your pain. I know that just reading I often have tears streaming down my face and I keep reading anyway because it feels right and it feels respectful to Gavin and your story. I hope that another gift that Gavin gives the world is that more people will stop today and become organ donors and that this story will make people think about what they would do if the very worst moment of ther lives, with their children, happened. I think that for many parents if confronted in that moment for the first time with the thought of organ donation it might be unthinkable and too hard to contemplate. I wish it wasn't a choice anyone would need to make, but I am hoping and praying that by reading this it raises awareness, just in case. Gavin will continue to touch so many people. Perhaps more now than even when he was on Earth.

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  26. And tomorrow is National Donate Life Blue and Green Day.

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  27. Oh Kate, this is beautiful. Yes, I think it was orchestrated by your baby in heaven. One of the many things I've learned since losing my son is that heaven is active and creative and close! Praying for you today and every day.

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  28. This Child of Mine
    by: Edgar A. Guest

    "I'll lend you for a little while
    A child of mine," God said,
    "For you to have the while he lives,
    And mourn for when he's dead.

    It may be six or seven years
    Or twenty-two or three;
    But will you 'till I call him back
    Take care of him for me?

    He'll bring his charms to gladden you
    And, should his stay be brief,
    You'll have his lovely memories
    As a solace for your grief.

    I cannot promise he will stay,
    Since all from earth return;
    But there are lessons taught below
    I want this child to learn.

    I've looked the whole world over
    In search for teachers true;
    And from the throngs that crowd life's land,
    I have chosen you.

    Now, will you give him all your love
    Nor think the labor vain?
    Nor hate me when I come to take
    This lent child back again?"

    I fancied that I heard them say:
    "Dear Lord, Thy will be done.
    For all the joys Thy child will bring
    The risk of grief we'll run.

    We'll shower him with tenderness,
    We'll love him while we may.
    And for the happiness we've known
    Forever grateful stay.

    But should Thy angel call for him
    Much sooner than we've planned,
    We'll brave the bitter grief that comes
    And try to understand."



    Keep strong Kate - I think God chose perfectly when he chose you to be Gavin's mother. xxx

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  29. Simply beautiful! I think nothing happens by chance and you are spot on that Gavin wanted you to meet. I am moved beyond words. I too, am an organ donor. God Bless!

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  30. Wow wow wow. Amazing. Heart warming. In the midst of scary things happening in our country, the foundation is still strongly made of very good people. Caring, compassionate, beautiful people. I'm so honored to know you, Kate and am continued to be inspired by your posts, your revelations and your experiences. Prayers to from Pa to Tx in more ways than one today.

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  31. <3. So amazing that Gavin gave both of you such a wonderful gift <3

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  32. Not only am I in love with you, your family and the spirit you have but also amazed by the connection you are able to find in others. I am walking in the March of Dimes walk for my twin sons, Mason and Christopher and will be carrying both Gavin and Darcy Claire's names amoung the other angels I've known that are now in heaven. The photograph of Gavin in the chair with beautiful light coming in is absolutely amazing. I would love to use that photo, if you allow me, while we go on our walk. THANK YOU for teaching us, Gavin. Thank you for sharing your Momma with us.

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  33. To Kate, and also to the mother of the 3-year-old twins in Texas:

    Both of you are amazing--amazing mothers, and amazing human beings.

    It's people like you that give me hope for humanity (which, in light of recent events, has admittedly been flaggin a bit). I feel immensely blessed to have "met" both of you, and will pray for you and your families with all my heart. Like probably thousands of people who have read your words today, I hope that the knowledge of all our prayers and good thoughts for you helps lighten your burden just a bit, helps you feel like you can "lean on us" whenever you have the need.

    {{{{HUGS}}}}

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  34. Wow - I am, once again, amazed by you and your family. Organ donation has always been an understood idea in my family and I've often thought that knowing the recipients would somehow ease the pain...I've not been put in that situation (thank God) but I wonder why it is kept anonymous as it seems from this story it could be so helpful for the process. Anyway, I'm so happy your families were able to connect and help each other understand - I wish more of this could happen in our world.

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  35. Kate, sweetheart. I have been worried sick about you. I am actually glad to hear you are on medication, as I think whatever it takes to help you get through this time is a good thing. I know you are juggling so much right now, and there are so many priorities, and you are doing it all with a broken heart. But you are a priority too. And if you need to go be in a room and sleep and let a family member watch Brian, then do that. If you need to just go take a drive somewhere and be alone, do that. If you need to go out with Ed alone somewhere, do that. Brian needs attention, of course, but he is not hurting the way that you are. And by taking care of yourself, you will be a better mom to him. So please remember that.

    I am astounded that you connected with the mom of the intended recipient for the liver, and that Gavin's story has given her peace and understanding. His story is making all sorts of miracles and good things happen.

    I mentioned on Facebook that Gavin pulling on that invisible string is a positive thing, because it shows that he believes in it and it gives him comfort and reassurance. He is doing OK, Kate. Take care of yourself. Ask for help, anything at all. Consider this: It makes people feel good to help you. So, if for nothing else, do it for them. [Hugs] [Infinite]

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  36. Truly this is a moment of grace and spiritual replenishment. Thank you for so openly sharing your experience in all its emotional extremes.

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  37. You are the kind of Mother I can only hope to one day be. Your strength and grace through all of this takes my breath away. Gavin is surely looking down at his mom and bursting with pride. Sending strength and peace to you and your family. May God hold you up.

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  38. You are such a courageous woman and it hurts me to think that you need to be a super woman and not cry, fall into despair and sorrow. That IS normal you know? My thoughts are with you during this time.

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  39. I wholly believe that Gavin's up in Heaven and he knew exactly what his mommy and he set up this chance meeting. Just yet another example of Gavin's superhero personality :) Kate, you are so strong and have been so courageous throughout this whole ordeal. Gavin, Brian, and Darcy are lucky to have such an amazing mother. And I'm sure Gavin and Darcy are loving each other's company in Heaven.
    Praying for your family, for you and Ed and Brian, and for strength for the lovely mother in Texas and her little boy.

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  40. This is the first that I have heard about your little Gavin. I am so terribly sorry about the loss of your sweet precious little boy. My thoughts and prayers are with you all. I have placed his badge on my sidebar in honor of your little hero.

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  41. Gavin knows what he's doing. He's still changing lives, and will continue to do so.

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  42. Glad your paths crossed. She needs you and vice versa. We are praying for your family every day. Love from around the US!

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