Monday, December 19, 2011

Matthew 12:36-37

They had a beautiful article on ABCnews.com this morning and I want to thank everyone who has left positive comments and words of encouragement to us.  It is TRULY appreciated.  And I know those of you who have followed our story and know what's REALLY going on, already KNOW how much I appreciate it.  You guys are what keep me going on a daily basis. 

But I guess trying to spread awareness about your son's extremely rare condition nationally has it's downfalls, too.  You get people with all types of opinions, and that's okay.  But there will not be people leaving comments on our story like that without getting MY opinion back.   

So for those of you who are not educated on our situation, let me begin... 

Tripp's life has not always been like it is today.  Please, I encourage you to actually read this blog- look at the pictures on the top link, look at his videos.  He has not been confined to the rocking chair, blind and in pain for 2 1/2 years.  He has been given the best life possible in his situation.  And I can say that because I have put my heart and soul into making sure he has.  He is the best kid I know- he has the most radiant personality I've ever seen.  Before he was confined to the rocker, he would play every day, he could drum to the tune of a song like NO OTHER.  He would smile, laugh, and melt your heart.  He has changed my life forever and the lives of the people who love him forever- just by being in this world for 2 years.  

And the people who made comments about me doing this for publicity?  Think about what you are saying... You are saying that I would rather see my child (MY CHILD- that I dreamed about, that I LOVE and gave birth to) in pain every day by CHOICE?  Because I want to be in the public?  Really?  I'm so sorry that you actually think a human being would do that.  
And as far as "putting him out of his misery"... ALL I'm asking is that you actually read and educate yourself on a situation before you cast judgement. 

 This has been an extremely gradual process.  Only within the past few months, has Tripp gotten to the point where he doesn't feel well enough to play.  And only NOW, for the first time in 2 1/2 years am I having to question his quality of life.  And I am doing everything in my power to make him comfortable for the rest of his time here.  
So please, please.... know what you're talking about before you make a comment about someone's child and someone's family who has gone through more in 2 years than you could imagine. 

I'm trying to understand your comments, I really am.  
But I'm just not sure what people think I am supposed to do?  He is BREATHING on his OWN.  He does not have a tube that he is breathing from that I can just pull the plug on. 
Yes, I admit, if he was breathing by means of a ventilator and was suffering this way, then of course, it would be about me making a decision to "let him go."  But this is NOT THE CASE. 
I cannot starve my child- who in their right mind could do that? 
I don't CHOOSE to torture him through baths every other day- I HAVE TO CLEAN MY CHILD.  It's not a choice.  What I CHOOSE to do, is sedate him so that baths are easier on him.  That is my only option.  

Sometimes I wonder if people really even believe what they write?  Like they think I would choose this life over my son's health.  Like they think I enjoy giving up every second of my life to have to fight for my child's life. Who would choose this life?  Certainly not Tripp, not me, or any of us- knowing what it would entail.  But we have stepped up and done what needed to be done to give my son the BEST care possible.   
And I'm sorry for those of you that can't understand that.  
And I am SO THANKFUL for the people who DO understand that.

And as far as the comments about having more children or for me to "stop breeding," I don't know where these things are coming from, but let me educate you AGAIN-
Yes, this was a genetic disorder.  No, my ex-husband and I did not know that we had a 1 in 4 chance of having a baby with EB- there is no test for it before the baby is born. 
But if or when I do remarry, my future husband will be tested to be certain that he does not carry this same mutation (that is 1 in 2 million) so that we can be sure that this doesn't happen again.  So as far as being irresponsible in ever wanting to have more kids in the future... AGAIN, please educate yourselves and do not make things up because you want to believe them.  There is no way that I would selfishly subject another child knowingly to this disease.  Come on people... It's ridiculous that I have to clear those types of things up.

I did not contact ABC to get this article published.  They contacted me.  And I appreciate it so much.  I, along with many others, thought it would be a great way to spread awareness about these precious kids and adults who suffer from a disease that is so rare that no one knows about.  
It is hard and hurtful to be faulted and judged for wanting to do everything you are capable of to end a disease so that NO ONE ever has to go through this.
So I hope that even through the nasty comments, that this will bring MUCH needed awareness about EB and eventually lead to a cure one day SOON.  And I hope that the people who chose to comment before reading our story will take the time to read and learn and educate themselves...
But most importantly, I hope they will get to know my little man's personality through pictures, video and my words- and know that he is nothing but a normal, innocent child who was given an unimaginable cross to bear, so that other's lives (like mine) would be changed forever. 

"I tell you, on the day of judgment people will give account for every careless word they speak, for by your words you will be justified, and by your words you will be condemned.”
—Matthew 12: 36-37


Again, thank you with all my heart to those of you who support us, support my decisions, and love my son.  
Thank you for understanding and learning and educating yourself about EB.

And THANK YOU, ABC News for featuring our story and helping us to spread the word!   


I love you, my sweet little man... and no one knows your heart like Mommy.  And NO ONE knows when you are ready to leave this Earth, except God.  Thank you for blessing my life beyond words. 
I will be right by your side, doing whatever I have to do to make you comfortable for as long as it takes.  You are my WORLD. 



Love,
Photobucket

357 comments:

  1. Courtney, you are so brave. Don't be discouraged by the ignorant comments of others... like you said, they have NO idea what is going on. You have made so many sacrifices for Tripp, and we all know that you have HIS best interest at heart. I will continue to pray for you, Tripp, your family and I will even pray that those who leave negative comments can somehow come to understand Tripp's situation. Lots of love to you and Tripp. <3

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  2. Wow I am shocked that you are getting people who have the NERVE to comment like that!! I am so sorry you have to deal with ignorant people like that. Keeping you in prayers. Praying for the nasty commenters that they may get some sense knocked into them!

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  3. I am one who does understand, actually I don't FULLY understand because I have never been in your situation nor do I have a child of my own to care for and make decisions for but I do believe that you are doing the right thing for your child and I understand WHY you are making the decisions you are making.

    Keep your chin up! There are more of us one your side than you know :) MERRY CHRISTMAS!

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  4. And by our words we may all be condemned indeed. Thank you for your post today. I didn't know about your story on ABC but I look forward to checking it out. I think you are very brave and generous for sharing your story. You have an angel in Tripp. God bless you both and comfort you physically and spiritually.

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  5. Courtney....I have looked at every picture and video and read your entire blog. You and Tripp have inspired me more than you will ever know. My heart is breaking for Tripp....I can't imagine seeing your child suffer so much. He is so blessed to have you as his mother. I am thinking so many things but I can't even write them! Please just know that I will think of you and Tripp for the rest of my life, as I'm sure so many other people will, too. Sending lots of love and prayers to you and your beautiful 'lil man.

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  6. The Lord has, is, and will hold you and Tripp in His mighty hand. he is your defense and refuge. Praying and loving you both, be the sunshine :)

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  7. It truly breaks my heart that you would even have to write such a blog as this post! You and your family will always be in my heart and prayers! You are doing an amazing job, Courtney!!!

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  8. Courtney, I pray that these people will read about your son and learn more about EB! It's a shame that people can say thing so hurtful without knowing. Me and my family will continue praying for you guys! I see not Tripp as hero, but YOU as well! I have never seen such a strong mother.... Still holding up your head when things get harder and harder for you and your family! God bless you! I hope you all have a wonderful Christmas!

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  9. I am a relatively new reader, but I think you are an absolutely amazing mommy. Don't let the haters bother you- they have no idea what it's like to be in your shoes. My thoughts are with you!

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  10. Just found your blog from the national news. Your story, Tripp's story has deeply affected me already and has made me so much more appreciative and grateful for my own life.THank you so much for that and I do believe that Tripp is a messenger to get many people to be grateful for life. Don't let negative people get you down; I like what you said in another one of your posts...that you would pray for them. I will too...for them to judge you with all that you have been through is..well there are no words. I wholeheartedly admire your and Tripp's strength. Many blessings to you and your precious, darling boy.

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  11. I'm very sorry to hear that some people view this as little more than a publicity stunt. Nonetheless, you have, once again, expressed yourself with eloquence and understanding. EB is a tragic disorder and people should be aware of its devastating effects.

    Keep up the great work and ignore any trolls that may be lurking under the bridge.

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  12. Courtney, I'm sorry that I missed it on ABC. Tripp is in my prayers daily. I have followed Tripp for over a year. These people that feel the need to pass judgement, should walk a day in your shoes. I'm sure they would see things differently. As a nurse, I think you are taking great care of Tripp. Only God knows when it's time for Tripp to come home. I'm glad you had the chance to tell more people about EB. The more people know, the faster a cure can be found.
    Love and prayers from South Carolina,
    Carla Spradlin

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  13. You are an amazing mother. I am in tears every time I read your posts. Your little boy is so so lucky to have you.

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  14. I just saw the story on ABC.com and thought it was a great way to raise awareness. People can be so ignorant and hurtful, and I'm SO sorry you have to endure that on top of all the other things you're going through.

    I know you know, but please KNOW how much we all love you and sweet Tripp. Nobody could ever be as good a mommy to him as you are, and you are doing everything you can to take care of him.

    Please kiss that sweet boy for us, and hope you have a Merry Christmas.

    Love from TX,
    Laura

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  15. Courtney - people leave nasty comments because they are just not capable of love - especially a Mother's love. Please don't waste one more second on the ignorant and just keep loving that baby like you do - you know what he needs and you give it to him every day.

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  16. Don't let ignorance bring you down. You know that you are doing the right thing and that's all that matters. You are the best mother Tripp could ever have and a wonderful EB advocate. Thanks for all you do.

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  17. No need to express those words to your son Courtney, for he KNOWS your heart. I cried as I read this post thinking of how anyone could EVER express critical judgement of your parenting. They are most likely not mothers themselves. They cannot possibly know the love for a child. They will regret their words. I am sending hugs and much love~ I know those of us who have your "back" do so because we know your heart as well! We know that it is BECAUSE you love your son so very much, that you take the time to help spread awareness of EB. A cruel thought of publicity never crosses our minds, what does, is the unselfishness of a dedicated and loving mother. God Bless you~ I love the way you respond to these comments, You, my dear, have a mission to fulfill as well and you are ready to carry on with what God has entrusted with you. You are one of those Brave Little Souls too Courtney. God choose you! I am proud to share your story with people I know. I tell them you are one of the most wonderful little mothers I have ever known. Hugs from Meme!

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  18. You are an AMAZING mom to Tripp and I am always in AWE of your strength and dedication to you son. The fact that people would criticize you shocks me. Please know that many of us out here know all the do for Tripp and how hard it must be.

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  19. The word ANGER comes to mind when I read about this. However I am guessing that is the exact response these individuals are looking for. Courtney, you and that precious child of yours have changed and inspired so very many people. In a world that often lacks in compassion, you and Tripp have opened up the eyes and hearts of so many. Our family continues to think and pray for each of you everyday. Wishing you,Tripp and your entire family a peaceful and Merry Christmas. With much love, Melissa Aldridge

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  20. I am so inspired by you, Courtney, and I'm so angry at anyone who would be so heartless. Tripp is an inspiration; how lucky he is to have you as his mommy. My heart breaks for you. What a callous, insensitive world we live in. It's truly a shame.

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  21. You are amazing. Take care and Merry Christmas. Sending you and Tripp our love...

    Landon and Tina

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  22. Courtney,

    It pains me to think that people are making such mean spirited judgements on your life, when they have no clue what it's like to walk in your shoes. I would be willing to bet that if they DID walk in your shoes, they wouldn't be able to bear all the things you, your family, or Tripp have endured. The truth is -- they aren't you and they will NEVER understand. Try not to let young souls with little life experience, try to educate you on what you know best. Give that one to God and let it go, even though I know it's difficult.

    I have nothing but empathy and LOVE for you, and I admire you so much! You are the best mama and everyone who has followed you on this blog or knows you in person, knows THAT is the truth. :)

    Tripp is a strong boy and he is, despite what these heartless people seem to think, CHANGING LIVES. And he is everything that is LOVE. If Tripp could speak to you now -- he'd tell you, Courtney, it's all going to be okay. He'd tell you that he wouldn't want you to have done anything different. Because you know why? You've literally done EVERYTHING in your power to help him and you love him with all your heart.

    If I ever met these people, I would be one of the first to speak on your behalf and defend you. And I don't even know you in person. But I also realize people like that are a waste of our time; Some people will just never "get it".

    As weird as it sounds -- try to find the humor in it {that's what my husband and I do when people look at our daughter with Down Syndrome}. Try to remember that people fear what they don't understand and that, that is their problem -- NOT ours.

    My husband & I will do the most ridiculous things {with humor of course and lots of laughs -- because after all -- sometimes you just gotta laugh!} to make those people feel uncomfortable when we catch them staring or if they feel so inclined to "bless" our baby girl.

    True love and joy comes from having a special little person, a "brave little soul" in our lives, that opens our eyes to what's REALLY important. And because of our Chloe {and I know this is true for you with Tripp}, we don't take ONE SINGLE DAY for granted. We live each day to the fullest. Her love guides us in that way and it's such a blessing.

    Moving forward -- know SO MANY people are supporting you and love your little boy. And we LOVE reading your blog -- your words, your stories, and seeing your pictures. We are all here for you, Courtney, and we love you.

    Sending you happy thoughts, feelings of peace, and my many prayers! ((Hugs))

    XOXO,
    Katie Hartsfield & Family

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  23. You are such a great mom! Don't let what others say bother you. Tripp is so lucky to have such a caring, loving family.

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  24. Courtney! pls don't waste yr precious time on trying to clear ignorant comments. You have ENOUGH in yr daily fights, fr your and much loved Tripp's life. Keep on fighting, you're truly an inspiration for us.
    Much much love and hugs fr you and little Tripp. xx

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  25. Will be praying for you all.
    Merry Christmas!
    xx

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  26. You are such an amazing mom to Tripp don't let the haters get you down.You have given Tripp the best life possible and should be proud of that.

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  27. I really hate that you have to waste one ounce of energy on the trolls and the negativity. Love up on that Angel Boy of yours and know that you have a crew out here in internet land that support and pray for Tripp and for you each and every day!!!
    Love from Sunnie in NC

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  28. The reason Tripp is still here is because God hasn't called him home yet! And in the meantime you are being the best mommy I could ever imagine! There will always be ugliness--don't let it steal your resolve as a mother. Don't let it steal the utter beauty you and Tripp are making out of your lives. I have been inspired and amazed by you and Tripp on this journey God has put you on. I think you are amazing and wonderful. Keep being wonderful you and know that there are thousands who have been touched by Tripp's story in a positive way.

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  29. Wow I am shocked that people would write you with nasty comments. Tripp is a blessing and is here for a reason. I have never shed so many tears over someone i have never met but I just love your little guy. Your a great mom and Tripp knows it, thats all that counts. Sending prayers your way!

    Kelly Cunningham

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  30. You should not have to validate anything you do, to these clueless halfwits. Praying for comfort and peace for both yourself, and your amazing little boy. You are an incredible and strong mommy!

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  31. "It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand." The Velveteen Rabbit

    Praying for you and your precious boy

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  32. I've just recently learned about Tripp and his condition. He is absolutely precious. I can not believe people could be so rude and post these kinds of comments. While a lot of parents I know are out leaving their children with who ever you and your mom are making the ultimate sacrifice. As a mother of a 21 month old and baby on the way i can only imagine how it must feel to watch your son suffer in pain. Reading Tripps story has really touched me. I know God loves children and is only allowing Tripp to suffer for a reason. I pray they find a cure. I believe with your willingness to teach people who have never heard of this disease a cure will be sought. I pray they find it in time for tripp. Best of Luck he really is the cutest little guy

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  33. I cannot imagine how someone could say something so heartless. You are doing exactly what you should be doing... showering that precious boy with as much love as you can for as long as you can. God bless you!

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  34. praying for you and Tripp and for those who write/judge without walking a mile in your shoes. i'm so sorry that you have to deal with that on top of everything else you deal with on a daily basis. you are an amazing mom, and Tripp is so lucky to have you. as i know you feel the same about him.

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  35. Hey Courtney,
    It is kind of you, once again, to give your side of things to those who have no idea what you are going through. I hope that you will feel not one more second needs to be devoted to explaining yourself. Even those of us who support you with our all have absolutely no clue how it is. The words you mentioned in a previous post stuck with me about Tripp and God having a deal that Tripp will choose when he is done fighting. That little boy continues his mission here, and I imagine he is getting every bit of quality snuggles he can with his mom. I think if Tripp could tell us or type a post of his own, any criticism of you or how you handle things would abruptly cease. He, and your family, have changed many lives. So just remember for every one person out there who chooses to judge, there are countless more who would go to bat for you and your sweet little one in a heartbeat.
    All our love and in our prayers,
    Tiffany Huish

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  36. To think that someone would have the audacity to leave you, of all people a nasty comment makes me realize that there are some really mean, unhappy and cruel people in our world. I hope you wont let their comments get you down. Your are one of a kind Courtney. I think so much of Mary when I think of you. Just like Mary, Heavenly Father choose someone very special to send his only begotten son to. Not just anyone could be the kind of Mother to Trip that you are. It took someone pretty amazing and special. You are an inspiration to me and to so many others. You make me want to be a better mother. You are truly beautiful inside and out!

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  37. Screw those cruel people! It always amazes me how people can comment so ugly on something they know nothing about!!!! I hope you have someone else screening your comments for you, the last thing you need is to read people's ugliness and stupidity. You and Tripp are my heroes! You have shown better than anyone I know what true love is! I think about y'all everyday and hope that Tripp is out of pain soon. Huge hugs for you and gentle hugs for Tripp....

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  38. Courtney, I have been following your and Tripp's story for several months. You and he are both such an inspiration. While I cannot truly understand what you are going through as a mother, please know that I as well as so many others, are praying for you and Tripp. Just remember that GOD'S TIME IS PERFECT!

    And as for those idiots who are leaving nasty comments, as hard is it may be, ignore them! You do not owe anyone an explanation! People, unfortunately, can be so cruel. You are doing what's best for your son and you are doing exactly what God wants you to do.

    Keep your chin up! Keep praying and know that there are so many praying for you and Tripp. You are an amazing mother! Merry Christmas!

    Most sincerely,
    Melissa Suadi

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  39. I am sorry that anyone would dare say such hurtful things about you, Courtney. You are the most amazing mother. I think of you & Tripp daily as I care for my baby boy. I pray for a miracle, for healing, and for guidance. And I thank God for my healthy family. I have to admit, you remind me of the Virgin Mary. She had to watch her son suffer, just like you. And I know that she gives you strength everyday. I know she is with you.

    You and Tripp have taught us about love & devotion & the strength of the human spirit. Your "brave little soul" has brought us all together & closer to God. You are doing so much more for your son than anyone of us can imagine. How dare anyone question your intentions or your decision. I'm so sorry for their ignorance. Please know how many of us love you & are praying for you & Tripp. Y'all are heroes. Please don't let ignorant, hateful people make you doubt yourself. We love you both!

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  40. Courtney, you are an amazing woman. Don't let igorant people bring you down. You are an amazing mom and this blog is evidence of that. I am praying daily for you, Tripp and your family.

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  41. I don't think you owe anyone an explanation for why you do what you do though I can understand why you feel compelled to knock some sense into those idiots. ((hugs)) You're doing the best you can do for him.

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  42. God bless you & your family for all you have done for this sweet little angel! I read your blogs and pray for your family every single day & cant imagine your suffering OR his!!! There's no need to defend yourself... people can sometimes be clueless, selfish and ignorant, thats just how they are! God knows all the pain you and your family have endured... there's a special place in heaven for you all! Merry Christmas Sweet Baby Tripp, Mommy & Grammy too... sending love and prayers from your neighbors in the Mandeville area!

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  43. Ignorant people who judge! Makes me sick....Courtney, you are sooo strong and Tripp is unbelievable! What a little man! Praying for you both and for his peace and comfort. Focus on the positive and never question what you have done and are doing for him....you are what is pictured next to "selfless" in the dictionary.

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  44. As I read the article my heart broke for you as it always does; to love your little boy so much and see him in the pain that he is constantly in is wretched, and I'm just reading about it on the internet.

    Then I skimmed the comments and just prayed you wouldn't read them or at least let them effect you. Because we know, and you know, that you are doing the best you could possibly do.

    God gave you and Tripp remarkable blessings when you gave birth to him.

    Praying for Tripp, praying for peace and praying for your sweet mama heart.

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  45. Coutney, I am so sorry you have to deal with negative people like this. There will always be those people who feel the need to pass judgement and put others down to lift themselves up, despite the situation. I know this situation is very, very different, but my dad & sister wrote and sang the song based on the story of my son's trip to see Santa called "Where's the Line to see Jesus" (not sure if you've heard of it, but I think you may enjoy it). For just as many positive comments we have received, we equally receive horrible comments about my son, how I'm raising my son to believe in a "mythical" God, etc. It's SO hard to ignore the negative responses, especially when they are talking about your child, but know that those people don't even deserve your attention or response. Particularly in your situation, they have never been in your position and, for them to make those allegations, chances are they don't truly understand the love between a mother and child and they don't understand that God is already handling things his way. You, Tripp and your Mom are precious, loving, life-changing, humble, amazing people and I, for one, have been blessed just knowing you and your story through your blog. Thank You so much!

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  46. Courtney, the people who posted those comments are obviously misguided and ignorant. There are so many people who have never met you or Tripp, but love you so much regardless. We can't begin to understand the pain that you go through every day, but we can support you and pray for you both. My husband and I are appalled by what others have said, but we want you to know that we know that you are doing everything you can for Tripp. We love you both and Tripp is lucky to have such a wonderful Momma. :)

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  47. I've been reading your blog for several months now, and I continue to be in awe with every entry. I can't begin to imagine what you're going through, nor can I know what words to offer to comfort you, but please know that I'm one reader (probably of many) who supports every choice you make and everything you do for your son. Any of us would do the same for our own children, but the majority of us aren't in your situation. I applaud you for making Tripp's journey public and bringing awareness to EB. I'd never have known about EB without your blog, so you've taught something to someone in the world. For that, you should be proud, and I thank you.

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  48. I can't believe someone could say such horrible things! You keep doing what you're doing--you're doing the right thing! I can see the love that you have for him (that's obvious in every single one one of your blog posts), people are just ignorant. I think about ya'll every day and worry when you don't update (I realize you have MUCH more important things than to update your blog). Just know that ya'll are in MANY thoughts and prayers.

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  49. I have followed Tripp's story for a long time, and I can not even fathom how someone could look at you and the love that you have for that precious little boy and leave comments like that. I am a firm believer that some people have very little happiness in their lives and that they try to hurt others so that they are not alone in their misery. It's sad... they are in need of some saving and maybe if they read your blog they would find the Savior. It is obvious to anyone who reads your story that God has His hand on you and Tripp and that God is walking this journey with you. Yes, this life is a life that NO ONE could even begin to imagine and given the same cross I think many would not be able to pick it up and carry it with such love and grace. You are an amazing woman and mother, and that little boy of yours in nothing short of a miracle! He has changed so many peoples hearts and lives. I know he has changed mine forever! I hug my kids longer, I strive to be more patient and loving in silly everyday situations because I know there are beautiful women like you that fight the real fight and love their babies like no else ever could. I will continue to pray for you and sweet Tripp!

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  50. Sweet Courtney and Tripp, THANK YOU!! for allowing me to be a part of your world. I have been following your blog and read every word you write about Tripp have seen every Video you post and feel the love and pain you go through for your son. Your words are so true only God knows when he wants him home. But for now he wants him here to reach out to more peoples hearts. "We love you guys".

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  51. Courtney, I've been reading your blog, and there are millions of people our there who love you and Tripp. You guys are truly an inspiration. Keep your head up and ignore the people who are jerks and don"t understand your journey. Your in our prayers. Merry Christmas!!! Love, The Russels Mary, Gary, Michael, and Kacie

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  52. I have been following your story for a few months now and I cannot believe anyone would make such comments! Tripp is a true hero as are you and your family. Everyday you sacrifice and everyday you have to deal with this awful reality! How can anyone judge? I know that if I were in a similar situation, my only concern would be the comfort of my baby. I am from Arizona and on the radio the other day I found out there is a very young couple whose 5 week old baby girl has EB. They haven't done the testing to find out which type it is. You can make sure I will be following their story also and do whatever I can to help! I think you are a wonderful mother and God never makes mistakes. He knew where to place Tripp and He alone knows how the story will end. HIM, not these ignorant people! God bless you and God bless Tripp, he is such a precious soul!

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  53. I am so inspired by you and your amazing son. It is heart wrenching to imagine the pain that he has lived with every day of his life, and yet he still shows so much love and joy. None of us will ever understand why Tripp has been made to suffer with this horrible disease while on earth, but that doesn't change that God has a plan for this little boy's life and has before he was ever even created. Tripp is touching and changing lives. Courtney, I'm sure you have found a strength you didn't even know that she had and you have been gracious enough to share a portion of your lives with all of us. I cannot imagine a child receiving more love and adoration than you are giving him. Yes, his life must be unbearably hard, but he has also been blessed with an immense amount of love and I have no doubt he feels it with every fiber of his being. My best wishes to your family. You are in my prayers and are loved by an almighty God!

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  54. My heart aches for you. Maybe it's because I have a heart (defect) baby and I understand having to put your child through tests and pain and surgery wishing it was you instead, but I would never think someone was doing this for publicity. I'm so sorry that you've fallen under the scrutiny. It was hard enough to deal with all we've been handed with our son, I can't imagine being in your shoes. I think you're a most amazing soul, and I think about the two of you daily. I keep you in my thoughts and I feel like a jerk for not yet having the time to make and send an ornament, though your three + trees makes me feel a little better, it's obvious you're not lacking. :) Continuting to keep you in my thoughts, hang in there mama.

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  55. Dear Courtney, these who want to understand they understand without saying, and those who don't - they never will, because they don't want to empathize.

    It's great that you raise awareness! People sure have to know about this disease. Maybe they will complain less.

    Best wishes to Trip! He is a great smart guy!

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  56. I truly think that some people are so miserable with themselves that they try to bring others down. Courtney, you are an amazing woman and Tripp is an amazing boy. Anyone who can't see that is seriously sick with their own issues. Honestly, Tripp has a terrible, terrible lot, but he has a disease. These people are miserable without EB, and they just can't imagine how YOU and Tripp are happy when they can't be.

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  57. Courtney, I cannot imagine what it feels like to hear those terrible things, when all you are doing is trying to live right by Tripp in every way possible. Never forget that God knows your heart, and his is the only opinion that matters. At this Christmastime of hope and miracles, may God soften the hearts of these people who judge your situation that they might educate themselves on EB and get to know the person Tripp is and not just the disorder heclives with. You don't need anyone to tell you, but you are a wonderful mother, and you make want to be an awesome Mom too. My husband, my sons and I pray for "baby Tripp" and all of you every night. May the peace of our Lord comfort and keep all of you this Christmas and always. Love to all of you.

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  58. I saw a quote on Pinterest that said, "Anonymous internet hate is probably the easiest way to say, 'i don't have the least bit of courage.'" Don't let them get to you. I have followed your story for a while and you are AMAZING! Tripp is a perfect angel and you two were meant to be together. My family and I pray for Tripp's healing daily. Much love from Ft Worth, TX!

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  59. You have to be one of the best mothers in the world! And that beautiful little guy is truly amazing and an inspiration to millions of people.

    The people who are heartless don't deserve a second thought from you. The world is mean out there, ignore the meanness and just focus on the millions of people who love y'all and are lifting y'all both up in prayer.

    You, Tripp and your mother are wonderful people.

    Kelley

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  60. Courtney, I have just read the story of you and your beautiful and amazing son. I am sorry to say there are people out there that like to just try and hurt other with the things they write. You are an amazing young mother, who is going through something no one but yourself and Tripp can understand. I will keep you and Tripp as well as your family in my prayers. I know it is easy to say, but try and ignore those cruel people leaving awful comments. God Bless, Melissa

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  61. As always, you are an inspiration! You are doing everything just right and don't let ANYONE tell you different!! Tripp is very lucky to have been blessed with such a great family! Love and Christmas wishes to each of you! And as always, you and sweet Tripp are in my prayers!!

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  62. I just don't understand some people. I always have said, you have no right to say anything unless you've walked in that person's shoes. People just don't have respect. I admire everything you have done and are doing for Tripp. I think about you both all the time. My prayers are with you.

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  63. Shame, shame, shame on people who judge you, your family, and your choices. I can only hope that if I ever faced the hardships you and Tripp have had to face, that I'd have the grace, dignity, undying love, passion, and commitment that you have shown. You are a true mother - dedicated and 100% devoted. But you don't need me to tell you that, you have the incredible love of your precious son to show you every day that he is so grateful and happy YOU are his mama. God bless you and Tripp, and Merry Christmas to you and your family!

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  64. Dear Courtney, I just found your blog today after reading the ABC story. I was so instantly touched by your story and your beautiful devotion to your sweet little man. God truly had a plan when he matched your soul with Tripp's. You are an amazing mommy. One thing I have had to learn the hard way is that in this age of technology, cowardly people hide behind their faceless profiles and say the most hurtful, ignorant things that they would never say in person. I pray that you don't let these things dampen your spirit. You have a heart of conviction, and you are the one person in this world who knows Tripp and his needs best. I will pray for you and your sweet family.

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  65. Shame on this people. They haven't walked a day or even a minute in your shoes so they cannot judge you. Please don't pay attention to them! Tripp has stolen ALL of our hearts! With love! Sarah

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  66. I've been following your blog for months and if the negative people leaving comments would take the time to follow your blog, they would see what I see...Tripps personalilty shines through the computer screen, through the pictures and videos you've shared, through your beautiful posts, I feel like I've known you and Tripp all along. Courtney, you do a beautiful job of sharing your heart and Tripps, everytime I read your blog, I'm brought to tears and crying out to God for you. Your little Tripp has brought not only me closer to God but I imgaine many many more. Thank you for sharing Tripp with us, I will cherish him always <3

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  67. I pray for you and your sweet angel every day. You truly are Supermom, and the rest of us can only hope to live up to the bar that you have set for other Mommies. I find myself so angry with God for letting this happen to such an innocent little baby, demanding him to heal him because he doesn't deserve this; then, I get on your blog, and you continue to praise him. What an inspiration :) Oh how I wish there was something I could do, other than cry and pray for each of you...I wish I could take every bit of pain and sickness away from his little body, and all of your worry and anxiety. NO ONE deserves to be in your shoes, or his; yet, you do it with grace...the grace that no one else in this world would be able to posess in this situation.


    Never question yourself or your intentions with this little angel, no one else matters, but you and him. You know exactly what you are doing, and so does he...that's all that matters.


    Always in my prayers and thoughts, Brittany.

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  68. I'm so sorry you have to hear/read hurtful things especially going through what you have too. I am still praying for a miracle for Tripp and wisdom, hope, comfort, and peace for you as you daily take Wonderful care of your precious baby boy.

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  69. Courtney ur little man has blessed so many and brought awareness to this horrible disease. U have so many supporters everyday and all over. Don't let the ignorance and jealousy of others hurt u and ur family. Enjoy ur man. He's a gift from GOD! Thx for sharing ur precious moments with us.

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  70. Courtney,
    I have been reading your blog for over a year now and I have never commented before. I just want to say that I commend you are putting Tripp and his comfort and happiness before all else. You are the definition of a mother in it's truest, most primal form! Most people/mothers will never be in the position that you are and will never understand the position you are in. I myself am a mother to 3 girls, 10 year old twins and a 1 year old. Your story, and Tripp, have inspired us. My girls read your blog too. As sad as your story is - it is an inspiration! We feel like we know Tripp from having read about him so long and his little spirit is so evident - we love him like he is a part of our family. We have laughed with you and cried with you and think of you daily! I just wanted to thank you for sharing the gift of your beautiful little boy and opening our eyes to the devastation of EB! We pass on information about EB whenever we get the chance now and pray with you and your family for a cure! Don't let the naysayers get you down - they haven't walked in your shoes... or read your blog. You were as much a gift to Tripp as he is to you! And though it is heartbreaking that he is in pain now and cannot enjoy life like he once did - it is a testament to you as a mother that he ever even had the chance too! You are not alone and we support you 100%! Love, Amber, Olivia, Skylar, and Bella Jasinski (Reading, PA)

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  71. You are amazing, and you handled this with much more dignity and grace than I would've. It's amazing to me how people who have never even been CLOSE to being in shoes like yours think they can judge what you should be doing. Keep on keepin' on, and tell Tripp how many thousands of us love him and are inspired by him.

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  72. The world is full of idiots and insensitive morons - and most of them have 24/7 access to the Internet. Just ignore them. They'll get what's coming to them in due time.

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  73. I firmly believe that Tripp's love for his momma and grammy outweighs his pain; he will only be ready when the pain outweighs his love. God's plan is not for us to know....

    You are an amazing mother and an inspiration to so many. As hard as it is, try to ignore the negative as nothing good will come from focusing on it. As always, thank you for sharing that sweet little boy with us all. He has a permanent place in my heart.


    Sending you lots of love, hugs and prayers-
    Mary and Baby Jackson

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  74. I am in tears at your story, but at the same time inspired beyond belief. You are a beautiful human being and Tripp is the luckiest baby on earth to have you as his mom.

    It's so difficult to ignore those hurtful comments, but I believe there are truly evil people in this world. You are doing what any loving parent would, and then some. You and that sweet angel are in my prayers and will be every day.

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  75. Courtney, you continue to inspire me with your love and your grace. Though we've never met you all, you and sweet baby Tripp have touched our lives more than you'll ever know.

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  76. I am absolutely heartbroken that you feel any need to defend yourself. You are one of the very best mothers on this earth, in fact, the very best mother on this earth. I have never heard of anyone who has as much determination as you have, to make life as perfect as possible for your son. My prayers will continue for you and Tripp.

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  77. I pray for you and your son daily. I hug my 2 year old tightly every day and thank God that he is able to run around, get into things, and be totally mischievous. Your son has made me appreciate life even more, and I've never met him. I admire you Courtney, for your strength and perseverance.

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  78. What an amazing story your son has. My little boy was born with trisomy 1. No doctor had ever heard of it. Like your son he has out lived all the Doctors expectations. He lives with a trach and vent too. We have endured months upon months at the hospital. I cant say I totally relate because our sons needs are very different but I do know the pain and hardships that come with having a sick child. I will for sure keep your little guy in my prayers. Wow what a mighty crown God has waiting for him. Its amazing how such little person can change millions of lives. I'll never fully understand why God chooses some to carry the burden of a sick child but in every circumstance all I can say is to God be the glory. Please always know your sons life is changing others is ways you may never get to see. Many prayers.
    Melanie Lupher (wittharrislupher.blogspot.com)

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  79. Courtney, you're a very special person to have been trusted with such an incredibly special child. I watched a bunch of Tripp's videos before and saw his pure happiness, his amazing musical ability, and a joyful spirit that came through the videos...and it was probably no match to actually being in his presence. Bless you, your boy, and your family.

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  80. You were kind enough to let ABC into your life to spread information about EB. Don't read the comments. Sadly, there's a big combination of ignorance and people who just want to tear others down. Save your energy for what matters: Caring for Tripp and yourself. Praying for strength and peace for all of you.

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  81. I can't even finish reading your post! I'm so so so incredibly annoyed at people who would question you, your motives, your family.... UGHHHHHHHHHH!

    I hope you know how fantastic you are, how amazing you are, how patient you are, how loving you are, how dedicated you are, how loved you are, and sooooo much more. NEVER EVER FORGET IT!

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  82. Shame on those who judge you.I know it is not easy being a mom especially of one with medical issues.I have a son with autism and every day I deal with different issues than you have with Tripp but I know it isn't easy especially when his quality of life is being questioned.You are a GREAT mom ,May god bless you and have a merry christmas to you and your family

    Audriana L.

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  83. Those that leave stupid comments that you would do this for publicity is so lame. There are so many evil people in the world and it makes me so angry but don't even for a second waste your energy or tears on them. They need to feel the pain you go through each and every second seeing your son in this situation. Just live each day to the fullest with all your love ones. Who would ever know our lives would have many trials and tribulations.

    Love,
    From a mom who understands!!!!!

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  84. Don't let others comments discourage you. You are his mother! Only you know what kind of quality of life he has and how he has been before it has gotten to this point. There will always be people who do not understand and who quickly judge and criticize. It may not even be about you but about people who have actually used their child's illness that have turned these people bitter towards all people who try to spread and educate the public about a rare disease that is effect children. He is a beautiful child & a such a blessing. His story and yours is so inspiring. I cannot even imagine the pain and hurt your heart must feel knowing he is in pain. However like you have said before only God knows when your precious angels time on Earth is done. He has a purpose :) I hope you and your family have a very Merry Christmas! God Bless you!

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  85. You are an amazing amazing woman. Your son, there are no words to describe that precious little boy. He has captivated my heart. I wish there was something I could do for that precious boy. My heart aches for Tripp, for you and your family. I pray God gives yall a wonderful Christmas miracle

    For those people who write negative things, yes I did read them on abc...SHAME on you people...there are no words for low lifes like you that post such horrible things.. Shame on you!

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  86. I'm so sorry that you felt the need to defend yourself. They obviously have absolutely zero clue about EB and your beautiful family. I hope they never have to walk in your shoes. Thank you for sharing your story with us. I think and pray for you and Tripp on a daily basis.

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  87. you are doing so much for EB. remember that always.

    Too few people know about EB. everyone I tell has NEVER heard of it.

    You are truly doing everything right.

    and Tripp knows :)

    and re: everyone who is throwing arguments at you. that is disgusting. but... they know about EB now. :)

    xo. love the verse.

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  88. Courtney, you are an angel. I pray for you, and your family many times everyday. I have followed your blog, and I am reminded daily how blessed I am with 3 healthy daughters. It is a sad fact that this world does NOT have a shortage of ignorant and hateful people!! You have accomplished more in a few months time spreading the word about EB, than those kinds of ignorant people will do in a lifetime! Take care of that beautiful little boy, and I hope all the words of love help you on this journey.

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  89. I can't believe how cruel some people can be, saying to "put him out of his misery?" What do they think he is, a dog or cat that should be euthanized? ALL life is precious and it's not up to anyone but God to decide when that life should end,and what mother would want to kill her own child? How could someone even suggest such a thing?

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  90. I am SO sorry you've had to endure unkind comments and criticism. You are such a devoted and good mother for the love and care you've given to your son. Thank you for educating me about this disease. I had no idea... and now I do thanks to you.

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  91. I still don't know how you continue on. I can't imagine ever having to go thru what you do everyday and making the decisions you have had to make. I'm officially giving you the title of "BEST MOMMY EVER" and you deserve it. I send you prayers and thoughts of a Happy Holiday season.

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  92. As a Mom myself I know that you would trade places with your son in a heartbeat without any hesitation if given the chance. We hate to see our children suffer and I can't imagine how hard it is on you, but please know I am praying for you and Tripp daily.

    "And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified."

    Romans 8:28-30 ESV

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  93. You are an AMAZING mother and Tripp is truly an angel!! I can't understand why anyone would say anything negative!! I hope you have a very Merry Christmas!! God Bless you!!

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  94. I went to check the news this afternoon and as I am scrolling down and see an articel about your family my heart was so happy. I have been following your journey for a while now and to see that it is being covered nationally for more people to be aware of this awful disease is great. I hate that you and your family, and especially Tripp have had to go on this journey but because of your strong faith I pray that your example and fight will help find a cure one day. Praying for you and your family during this Christmas season. Love to Tripp.

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  95. Dear Courtney,

    We truly are so sorry that some have the nerve to speak such ugly things. The bottom line is...abortion and euthanasia are the easy way out for a world that simply does not want to be inconvenienced by the life-needs of another. I believe they are very convicted about their own self-centeredness when they see someone like you pouring out your life to your son as you fulfill your commitment of motherhood to the very last fiber of your being. Press on and know that you never, ever stand alone.

    God bless and keep you, Tripp, and all dedicated to this journey in His Loving Care!

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  96. Courtney, I can't imagine the hurt and frustration reading negative ignorant comments - but yet you address the situation with such grace and strength. I have been following your blog for a long time and you and Tripp continue to be in my prayers. I especially think of you two daily with the christmas season upon us and with Tripp's health being what it is. I have two children and absolutely cannot imagine living thru EB with them...seeing them suffer so much. My heart goes out to you one hundred fold and i continue to pray for god to keep giving you strength. I pray for Tripp that God gives him comfort and peace. I pray his spirit is at peace despite his physical discomforts. He has changed my life. I will never forget him. Amazing that a little boy who cannot speak and is home-bound will never be forgotten by a total stranger. Every time I hear the Christmas song "Drummer Boy" I think of him. Much love to you and Tripp this holiday season. Prayers will keep coming your way. GOD BLESS - Amy

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  97. The people that write negative comments are just ignorant assholes (excuse my language but really no other word fits. Well maybe a few others but I'll keep it as PG-13 as possible) They obviously have never read your blog and just say these things to get a reaction. They are further evidence of the wickedness in this world and their comments should be completely discarded. Keep doing what you are doing Courtney! You and Tripp are amazing!

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  98. I came across your article for ABC on my google currents and was floored by what I read. I had known about the disease but knew nothing of the effects that Tripp is experiencing. You and your family are in my prayers. It is never easy and the strength that you and Tripp display by fighting on gives hope to others. Pardon my ignorance on this issue but I was struck by a thought concerning this. There is a new technology out for burn victims that uses their own skin stem cells that gets sprayed back on the burn area. It is dubed the "skin gun" and my question is, is this an option? Though probably a constant treatment I wonder if it could indeed assist in this situation. Again, I apologize for ignorance in this as I do not have enough knowedge of the disease to know if this could work, but I hope it can. You and Tripp really are heros. I will go home and hug my children, not because they are mostly healthy but because I do not know what God has planned for them. Life is short. Thank you for your story, your strength, your love, and your son. God bless and Merry Christmas.

    John D.

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  99. I am sorry other people are so ignorant. You are doing an amazing job with Tripp! He is just as blessed to have you as a mother as you are to have him as a son. I will continue to pray for both of you!

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  100. It sickened me to read the negative comments posted in response to the ABC article. Courtney, you are an AMAZING mother. Because of you and Tripp, EB is no longer the worst disease you NEVER heard of...EB now has face...TRIPP. You're doing the best you can with the hand you were dealt and you're doing it with such grace and dignity. I cried when I read those hateful comments and hoped you wouldn't read them. It's a shame that people can say such ignorant and hurtful things. You and Tripp have experienced more in the last 2 1/2 years than most experience in a lifetime. Tripp is a fighter and it's obvious where he gets it from...YOU! Keep doing what you're doing and keep spreading the word. Someday, there will be a cure and you will be able to say "Tripp and I helped"...Please know that Tripp will not have suffered in vain. You and he have touched countless lives...and you have so many more yet to reach. Merry Christmas to you, Tripp,and Grammy.

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  101. Courtney,

    There are a lot of idiots in the world, and unfortunately, they are allowed to blog.

    I've been following your blog for over a year now, and it has changed my life, and the way that I interact with my children, especially my son, who is the same age as Tripp.

    I pray for your son daily, and have asked God countless times to bring him comfort and to take away his pain. I just don't understand why someone so little and so innocent has such a heavy cross to bear.

    You should not and cannot let ignorant people get inside of your head. God knows, you have enough on your plate to deal with and worry about.

    These critics have never walked in your shoes, and I doubt seriously that any of them could. It's very easy to criticize when all you have to do is sit on your comfortable sofa and type.

    Colton's Mommy

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  102. I have followed your blog for some time now, you are a amazing mother, women and caregiver. Unfortunately with trying to educate everyone you come across the very rude ignorant people who leave you rude comments. These people are actually questioning you for not ending your sons life, like it's your life to end and not God's. What Mother chooses to end their child's life? Crazies!! You encourage me to be a better mother to my 5 kids, a better caregiver to my Type 1 Diabetic daughter. You have strength that seems unimaginable, but I realize with no choice you are strong for your child. Please know that you and Tripp are changing people's life's, I pray for you daily and think you guys are nothing short of amazing.

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  103. Courtney, you are in my thoughts and prayers constantly. Don't let the negative people get to you- they can't possibly understand what they are saying, what you and Tripp have been through, and what an absolutely amazing mom you are. There are SO MANY more people that know how hard you work, how special Tripp is to have you as a mom, and just what a wonderful little fighter he is. You are so right that only God can give and take life, and you are doing an amazing job of taking care of your son while God wants him here. I can only imagine how frustrating it is to read those comments, but don't take them to heart- just know that you are God's child as well, and you are loved!!! Hang in there. I love the verse where Jesus says, "In this life you WILL have trouble. But take heart, for I have overcome this world!!!" Much love to you and Tripp!

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  104. I am weeping as I read this. As a mom, my heart goes out to you. You're right. No one knows what your day to day is like. They don't walk in your shoes. Just know....for every ignorant person that leaves a comment, there are 1,000 more of us that admire you greatly.

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  105. Courtney, I have been following for awhile. The ABC piece was beautiful, but I knew better than to even look through the comments. It is a sad thing, but there are armchair life-livers out there that think they have the right to cast judgement on everything they come across, which is so less than fruitful. I just recently had the lovely opportunity of being torn apart over changing our adopted son's name, but God in His grace, allowed me to grow deeper in my convictions & respond in grace, which is what you have done beautifully here. Your journey inspires me & gives great perspective. {{Hugs}}

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  106. I think you are an amazing mother! Like others have said before me, i am sure that someone who writes nasty things to you are unhappy and they wish to bring others down. How they can misunderstand you and everything you do for your beloved son shows what kind of igorant people they are. They probably read blogs in general only to write ugly coments. But it is NOT okey to write coments like that to you!! It's awful. Give all my love to sweet Tripp. He is in my heart and my mind everyday. Merry christmas. God bless you and Tripp and everyone you love.

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  107. Courtney,
    No words can describe te anger I have toward the people who are saying such negative things. Tripp has absolutely changed my life in so many ways: the way i pray, the way i think about things, the way i treat people, and especially the way i love my son. I have never felt as much love for someone ive never met as i do Tripp and i 100% believe it is God. While Tripp is changing the world, i understand that you are suffering watching your child suffer and i could never imagine the pain you go theough emotionally. When i think about Tripps pain, i cant control my tears. I want nothing more for his pain to be lifted..i pray for his miracle every night. Please know that i feel this child is my angel and has forever changed me. I have been blessed enough to volunteer in some events to spread awareness, and i can tell you this.. You have SO much support. Thank you for sharing your angel with us and thank you for being strong for him.
    God Bless,
    Megan Schmitt

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  108. If anyone has ever read anything that you have written, they would know you would give up every second of personal recognition for Tripp to be healthy...in a heart beat. You are trying to raise awareness and take care of your baby, not get attention for yourself! So ridiculous!!!! And geez, they want you to just put him down like a dog or something????? FOOLS! You are amazing and we know how much you love Tripp.

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  109. Shame on those people. Shame on their very souls.
    I honestly don't read comments on the internet because I hate exposing myself to the negativity of strangers and their unnecessary cruelty.
    Stay strong, lil man and lil mama. You're all in our thoughts and prayers daily.

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  110. Darling Courtney, you are seeing the dark side of sharing an intimate and complicated story of struggle... I'm sorry it even has to exist, but I believe that you are educating far more that appreciate you. Unfortunately the dark side is often more vocal. Those of us that know you and precious Tripp through this blog know your loving heart, and his incredible journey, and how he HAS changed this world and the people in it. I KNOW it's true because I am one of them. I'm not sure I've ever told you that I am terminally ill, but Tripp's journey has taught me so much about my own journey and he and you have made me a better person. I will be meeting my Heavenly Father a better person because of what you and Tripp have taught me. I can't wait to meet Tripp on the other side...well...I can wait but know when it's our time it will come and it will be as it should be. Don't be bullied darling girl. You are awe inspiring, and is your (our) little man. Love to you both...

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  111. I don't know how do it, but if is was child I would cherish every minute I had with him. You are a wonderful person and mother. I'm so sorry you and your precious son has to go through this. And for those people who leave nasty comments and say you should "put him out of his misery" needs to think about what they would do and how they would feel if it was their child. They need a reality check

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  112. I would just like you to know that for every idiot that casts judgement there are 100 supporters! Forget what the uneducated say and remember that you serve an awesome God! Praying for you and your family often. Please keep your pretty head up!

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  113. Courtney,

    The ignorance others bare is no fault of our own. I have to tell you that i was listening to the radio the other morning. The DJs grant "Christmas Wishes" to families in economic distress. This particular family just learned that their 3 month old has EB and they are awaiting to hear back on which kind. I am not one who calls into radio shows. I am terrified of speaking in public even if it is over the phone. But my fingers started dialing the number. I wasn't even sure of the number, i had never paid attention to if before. I was shaking i was so nervous but I know that i needed to tell people to go to DebRA.org to learn more about EB. They were running behind so sadly I didn't know get to go on the air. What I guess i am trying to tell you is that your story and Tripp's story has moved me in such a powerful way. I often find myself crying and praying for Tripp on my way home from work, when i have a moment to reflect on the day. He is a power vessel of God and wish he did not have to be. I wish you had moments with him that i have with my children. To hear the words, "I love you mommy" are not words that a mother would give up hearing to be on TV. It angers me that people would leave such hurtful comments. You are a GREAT mother!

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  114. For every uneducated troll there are 10000 people standing behind you, Hotard family. Love you and your precious little man!!!! xo

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  115. I am sooo sorry you are getting attacked. SOOO sorry. May God be a shield around your heart right now and may you and dear precious Tripp and your Mama, feel HIS arms holding you tight.

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  116. I have been following up on you guys for a few years now, and I just want to say keep doing exactly what you have been. Don't listen to anyone that has anything negative to say. They could not possibly imagine what you deal with. You are an inspiration to all parents (and children). Never give up on being positive. I have a 3 month old now, and I know what you are going through is not easy, but you are doing am amazing job. You are always in my thoughts and prayers.

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  117. Any person who takes the time to read your blog, as I have over the past year, would know what a wonderful, loving, caring Mom you are. I hate that others are judging you. It makes me angry and so upset. No person can judge another unless they have walked in their shoes. I read the ABC article and I thought it was beautifully written and all it showed was the struggles Tripp faces and how much love he is surrounded by every single day. Only God knows this story and you are obviously trying to give Tripp a life that reflects that. God bless you and your sweet son.

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  118. Dear Courtney, I'm so sorry you've been attacked with ugly comments. Tripp is a precious child. I hope you are surrounded with love and support this Christmas. We are thinking of you. Sending you warm thoughts from Los Angeles...

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  119. Oh, Courtney, I cannot believe that there are people who could be so mean and cruel as to make those kind of comments! You are right...they have not taken the time to know Tripp's entire story and to fall totally in love with him as so many, MANY of us have. I don't think there would be many of us who would not agree to take on some of Tripp's pain if he could just suffer a little less. It is through the videos and pictures that you have posted that truly captured my heart. Little man's personality, intelligence, and unquenchable spirit shine through on each of them. I smile and laugh with him even through my tears. Thank you, thank you for sharing him with us...I know it was a hard decision for you and becomes harder each day...I am so so sorry. Something else that comes through loud and clear on each video is the love and pride in your voice as you talk to your son, encouraging him, praising him and just loving him. (And that goes for grammy too!) Only God fully understands Tripp's purpose, and I am just grateful that you are letting us share in his journey with you and your family. Prayers and love to you.

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  120. God knows what kind of mother you are to Tripp and that is ALL that matters. He knows every tear you have shed for that precious baby. Please know that you are prayed for by way more people than the ones who judge you. Tripp is fearfully and wonderfully made and you were made to be his mama, don't let anyone make you second guess anything. You are loved!

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  121. You don't owe anyone an explanation! Don't even waste one single minute thinking about negative comments. You know and Tripp knows just how lucky you are to have each other. You and Tripp are an inspiration....amazing. Merry Christmas, you are always in my thoughts!

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  122. I am absolutely LIVID right now! I cannot comprehend how people can make such cruel and ignorant comments about a situation they know nothing about. Seriously, I've been fuming all day about it...aaargh! I suppose there is always going to be some rotten people out there, and we should probably feel sorry for them (as hard as that sometimes can be). Please Courtney, try not to let it upset you. You have zillions of people who love and fully support you and Tripp! Not a day goes by that I don't think of you both, and I cry for your pain and Tripp's often. Every time I see a picture of your gorgeous angel, my heart fills with so much joy and sorrow; it almost physically hurts. Please, please give Tripp hugs and kisses for all of us who love you both so dearly!

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  123. I am so sorry that you are having to deal with ignorant people who haven't taken the time to know Tripp's story. If they did they would see how truly amazing you are as a mother and the angel Tripp is all of us. I am a mother of twins who are just a little older than Tripp and every time I read your blog I am in tears. I can't imagine what you go through on a daily basis and the pain Tripp is in but I pray for you both each and every day for you and Tripp have forever changed my life.

    Wishing you and Tripp peace this holiday season, surrounded by those you love.

    ~Erica

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  124. Courtney -- Judging by the comments left on this blog and the ones left on the ABCnews.com article, you obviously have more loyal, passionate, and loving supporters (me being one of them) than detractors. I often read articles online as well as the comments left by readers, and I honestly think that some people just get their kicks out of leaving ignorant, hurtful, and ugly messages. But please remember that this opportunity that you have been blessed with to spread awareness of EB through abcnews.com has potentially touched and inspired millions more people around the world. The article was beautifully written and is a testament to what an amazing person you are and what a brave little man Tripp is. I have no doubt that this is a huge step towards finding a cure for EB. What a blessing you and Tripp are to all of those suffering from EB, and to all of us whose lives you both have changed just by being exactly who you are.
    Love and prayers, Janice Liu

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  125. Courtney,
    I cannot believe people would leave you such heartless comments.

    I think you are the best mommy ever and Tripp is so blessed to have you care and love him.

    I know it is hard to ignore those comments but do try.

    Praying for you and Tripp often. I believe you have an army of Lord living with you.

    Blessings and hugs,
    <><

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  126. Courtney, I've been following Tripp's story ,and never have any of those criticisms ever crept up into my mind. Not even one tiny bit. The people that said them either misunderstood, heard (mis-heard)part of the story, or are people who are worse than ignorant, because anyone who would purposefully add to your burden is simply put, evil. But I am confident the news about Tripp will do vastly more good than harm. Please try to mentally distance yourself from anyone saying those awful things and focus on the far majority that have responded properly with prayers, words of comfort, and hopefully some financial support for the medical teams working to cure this disease.

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  127. You know the funny thing about the people who would post such atrocious comments? They are the very reason why God sent you and Tripp to this world. Think about it: because there are people out there so heartless, He sent someone with a heart as big as Tripp's. Because there are people out there so selfish, He sent someone as selfless as you. As obnoxious and vicious as they can be, you and Tripp are a million times more loving and giving. They'll never win, and because of your faith, you'll never lose. It doesn't matter what opinions they have; Tripp exists because the good he brings to the world outdoes all of the bad they try to put in it. It's a shame they can't see that.

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  128. Courtney, I guess it just isn't enough that you have to watch dear Tripp suffer so much, you have to endure the ignorant comments also. The dear Lord knows you're heart and Tripp's heart. HE knows what a wonderful & unselfish Mother you are. He knows that publicity is the furthest thing from your mind. Please ignore the nay sayers, they don't or won't understand. May GOD bless you abudently for the your unceasing love and care of Tripp. Love & prayers to you both. Kathy, Carriere, MS

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  129. I am so sorry that some thoughtless, clueless people dumped their vicious minds on you. It is outrageous and uncalled for. Fortunately I know those cretins are in the minority as most people have been supportive and caring. I check your blog every day for an update. Praying very hard for Tripp, you, and your family. May God Bless You All!!!

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  130. People are so ignorant. It's so easy for people with perfectly healthy children in their perfect little worlds to judge others. Anyone with a heart or a brain can see how much you love your son and how heartbreaking it must be to watch him suffer. It's easier said than done but try not to let the comments of those ignorant jerks get to you. You are amazing!

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  131. Hi Courtney,

    I have been following Tripp's story since the beginning of your blog. I think of you and Tripp (and your special mom and dad) every day! In fact, today I was annoyed with something silly at work and paused and thought of you and Tripp, and how everyday issues are not worthy worrying about. I can't imagine how it must feel to hear hateful comments. Tripp has been cared for and loved by his beautiful mother in such a special way. I miss hearing Tripp's drumming skills and think of him this Christmas every time I hear "Little Drummer Boy," my favorite Christmas carol.

    Think of you always, Jane

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  132. Hi Courtney!

    I have been following Tripp's story since the beginning of your blog. I think of you and Tripp everyday. I am a mother of a daughter about your age and I often think how proud your mother must be of her beautiful daughter. I also think of what a great mother and father your parents are with their love and support. It is obvious that Tripp has been given nothing but love, true unconditional love, from you.

    I miss Tripp's drumming! I think of him every time I hear my favorite Christmas carol, Little Drummer Boy. The beautiful pure souls the Little Drummer Boy and Little Drummer Tripp have are what we need more of today.

    Thinking of you always, Jane

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  133. You are amazing...words cannot describe!

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  134. I just found your blog and want to thank you for sharing your amazing, heartbreaking, and inspiring journey. I am floored by the grace, strength, and peace in your writing. Please know that you and your beautiful son will be in my prayers, and that you have forever touched my life. I wish the greatest comfort, peace, joy, and love for you and Tripp.

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  135. You are such a wonderful,dedicated,loving and strong mom. Try not to let the haters bring you down. You know the truth in your heart and that is all that matters. Stay strong! God bless you and Tripp and your family.

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  136. Courtney, Your doing an amazing job caring for that sweet little boy of yours. Tripp knows the love and care you give to him. Don't listen or even waste your energy trying to defend what you are doing to all the idiots who make stupid comments. Your a devoted mom taking care of your very sick little boy the best that you can. You know it, Tripp knows it and God knows it. That's all that matters. Sending my prayers to your family.
    ((Hugs))
    Lori

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  137. I spent many hours crying reading your blog and am inspired by your strength and courageousness in taking care of your precious blessing, Tripp. You are an AMAZING mother and anyone who says otherwise is absolutely crazy. You are an inspiration to me, and many others as well. I pray for you and your family daily.

    Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.”
    Deuteronomy 31:6

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  138. I found your blog through a "heart" baby group. My daughter was born with a CHD. I think you are an AMAZING Mother. I could not even imagine what you,as a mother, go through daily. Tripp Is a very special little guy to have you as a mom. God knew what he was doing when he gave Tripp to you!! I have to tell you, when I see the pictures of Tripp with his huge smile on his face, It warms my heart. We are praying for you guys.. Merry Christmas, God Bless You..

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  139. Such a courageous mother. i do not know what i would do in your position. May God Bless you and your baby boy. I look forward to continue following your story.

    Wishing you well, and Merry Christmas! :)

    Ms. Ribbits

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  140. I don't know you, but I feel like I know your voice and your heart through your blog. I'm so sorry that Tripp is in pain and suffering, but I'm so glad you are there to help him through it. I wish you much peace as I know the road ahead is hard.

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  141. Courtney I cannot imagine having to make the decisions that you have had to make about your son's health and then to have to hear these types of comments from these people who speak totally out of ignorance. Everything you have done for your son comes from the incredible love you have for your child, and the hope you will always have for your child. When a parent loves their child they never give up on them and they do what they can to comfort them whatever that might be. You are a great Mama and as long as Tripp knows that and I know he does...really that's all that matters! Sending lots of LOVE and (((HUGS))) to you and Tripp and your entire family.

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  142. You continue to amaze me... I'm constantly praying for Tripp and checking for updates. Can't imagine how you get through this on a daily basis. Hang in there... you are doing a wonderful job caring for your baby and raising awareness for this terrible disease.

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  143. I am so sorry you have to deal with harsh words and people. You have been given a hard road to travel, but we can all see what a wonderful job you are doing with Tripp. He is so lucky to have you as his mom, protector, and friend. I am praying for you always!

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  144. You are an amazing mother who is doing what's best for her family. Isn't that what we mothers are supposed to do? Tripp is here to move mountains and boy are they moving. Your family is always in my prayers. I hope you can look at your beautiful son and forget what all the ignorant people have said. His spirit is heaven.

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  145. Courtney: I check your blog for updates daily and have been following you for quite some time. And I have a "problem" that gives me just the slightest little sliver of understanding of your pain. That "problem" is that I have so fallen in love with precious Tripp and grieve for him, you, and your family. It's not a real problem, of course. I just use that word because I feel just the smallest sample of the pain you must feel at the thought of his suffering, and the gut-wrenching reality of the horrible progression of his disease. I am deeply touched by your drive to speak for him and others who suffer from this wicked disease, and am touched as well by the tender manner in which you love and care for him. What a combination God put together when he gave Tripp to you and you to Tripp. I believe the beautiful story you shared of the precious soul who wanted to be used of God by being willing to suffer so that others would show their best is a fine analogy of what may be some of God's purpose. I certainly don't have the wisdom to speak for God in such circumstances, but there is no doubt in my mind that Tripp, you, and your family are demonstrating God's greatness, grace, and mercy in your lives. May your spirit continue to be strengthened by God's Holy Spirit, and I pray that God's peace covers your home and HIs grace will continue to show itself sufficient for all you endure. May precious Tripp have relief from his pain, and may he smell the sweet breath of the angels as they minister to him in his suffering. God bless you, dear young lady of remarkable character and depth. You and your precious soldier boy are deeply admired by this woman in Indiana.

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  146. You are so strong. Some people are cruel and ignorant. You show how people should be - dedicated, determined, loving, faithful, humble and tireless. I read the piece on abc news and have been so moved by your story. As a new mother of an eight month old, I can only imagine the feelings you go through each day. Focus on the positive, loving people in your life and on your faith in God. I will pray for you and Tripp each day.

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  147. You are an amazing mother!! I would simply tell those ignorant SOB's to keeping their freakin'comments to themselves...Okay - so that isn't very mature of me...but man oh man!

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  148. Wow, it saddens and sickens me to know there are people out there that are so cold and so quick to judge. I think about Tripp everyday. His struggles inspire me to be more grateful for the blessings I have. I hate that he has such a huge burden to bear and that he has any struggles at all. I wish that he wasn't suffering and I know you more than anyone wishes that too. I will never know what it has been like to deal with what you have had to deal with. Therefor I would never pass judgement on your decisions. I have been reading your blog for a long time now and from what I have seen I know you love your son so much and that you have done your best in caring for him. I truly pity anyone who think they could "put their child out of their misery" and just let them die.That seems so cruel and unnatural. Like you said, if he was on life support that is one thing but he's not so it's not something you can control. As you've said many times before,God will decide when it is time. You have done your best for him and he is so blessed to have a family who is trying so hard to give him the best life they can. I have come to truly admire him and you as a mother. I am so sorry that people are questioning you and your intentions. You don't deserve that. Shame on them. Just remember that a lot of us reading this blog don't truly know you but most of us believe in you and your intentions. I will continue to pray for Tripp's comfort and for yours.

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  149. Courtney -

    You are doing an amazing job, the love you have for your son is inspiring. Your writing truly shows the depths of your emotions and love. Tripp is such a gift form God and an amazing little man. I feel honored to have had the opportunity to read about your journey and be inspired by your man. The Father above knows what he is doing. I pray for you - in the name of the Father, the Son and the Holy Ghost.

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  150. How can anyone judge when so many have never dealt with such an experience? God will be the final judge and these people with such negative remarks better pray he is half as understanding as you are. God bless you and Tripp. As a person I can not even begin to imagine how difficult this must be for you and your family. As a mom, my heart breaks for you but I certainly can see that each day with your little boy is a blessing.

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  151. I've never read your blog, nor had I heard of you until today's ABC article. However, I knew as soon as I saw the story and realized it was surrounding a blog that you were going to be attacked. I am so, so sorry, but please remember that most of us understand what you are doing and why you are doing it, even after only a cursory glance over your blog. Yes, there are a lot of ignorant idiots out there who will cast judgment. If it is getting to you and you cannot ignore those, then I would disable comments entirely because it certainly isn't going to add to your qualify of life to hear from those people. Unfortunately the internet brings out the worst in people. Please don't worry about what everyone else is thinking of you and just do what you know is right for your son; no one else can make that call except for you.

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  152. Don't listen to those people. You and your mother are amazing! Doing what's best for Tripp. Don't people see that life is already pretty tough around your house! Let's lift each other up instead of trying to tear each other down.

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  153. Courtney,

    Don't waste another second even thinking about these crazy people who obviously don't have children...because if they did they would know what the love of a parent for her child is like. Even though we live in a "jump ship" society (and many people do this with their kids), true love for a child is never giving up and always having hope.

    It seems that every day there is another story of child abuse on the six o'clock news. It is so refreshing to hear about a parent that would sacrifice herself for her child. Isn't that what a parent is supposed to do??? When did the definition of parent become...I'll parent when it is fun for me...convenient...easy. It seems by some people's opinions that in our "disposable society" even children are! What????

    Keep on keeping on, Courtney. You are God's good and faithful servant. You are doing the right thing.

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  154. A quote from a recent country song comes to mind...

    "Beer is good. God is great. People are crazy"

    I have been following Tripp's story since around his 1st Birthday. You are beyond an amazing mother. I can't believe that anybody out there would even thing anything but that.

    Jess
    NICU nurse, Chicago

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  155. It makes me so sad and angry that people can be so ignorant and hurtful. You of all people do not deserve this. They should be ashamed of themselves. Hugs to you!

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  156. Oh, Courtney. This post made my heart hurt. What the heck is wrong with people that they have the nerve to question your life??? Hugs to you and Tripp, you are both amazing and I wish you the best.

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  157. Way to go for not stooping to their level! Your post was well thought out, kind, and straightforward. I'm impressed how, with all you have to deal with every day, you can still keep your composure. Sending good thoughts your way this holiday season.

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  158. I'm so sorry you've been attacked like that. People are so judgmental & quick to say hateful things.
    God is in control of this situation. Tripp is in His hands. You are doing an amazing job with him. I pray for your family daily.

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  159. Sending you and Tripp the world's biggest hug for being the world's biggest heros right now. Tripp is a fighter and he loves you as much as you love him. I came to know you through our friend Bella (now in heaven) and find you to be one of the most wonderful moms I have every seen! Hang tough through all this stupid negative stuff and be the wonderful, loving, caring mom you are for your wonderful boy.

    You are doing GREAT through this most difficult journey God has put you 2 on.
    Tina in NJ (Bella's friend)

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  160. Your whole family is a wonderful example of God's love but unfortunately, not everyone's eyes will be open to that. Thank you to your family for bearing this cross with the grace and humility you have shown and allowing God to work through you, being an example. My family continues to pray for you.

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  161. I just started reading your blog and I am in tears. I admire you so much!! The people that are saying the negative things don't have a heart. No one should be able to choose when someones life should end. That is between them and God. Your precious little boy has a purpose in life or he wouldn't be here right now. The pictures should prove that. I am going to hold my 2 year old daughter a little tighter tonight. My heart goes out to you but, I can see that you are giving him the best life you know how. Lots of love and prayers sent your way

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  162. I started following your blog awhile back, after a friend pointed me in your direction. She was very moved by your blog, as I am. Tripp is a very special little boy who has touched the lives of so many people forever.

    Not that my opinion means much, but you are a very courageous and loving mom. I commend you for raising awareness for this horrible disease. Use every platform you are given to educate those who will listen.

    I can't imagine what you and Tripp must go through on a daily basis. Your family stays in my prayers.

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  163. It's so sad that people can judge the way they do, without knowing the entire story first!! They would be introduced to such a sweet little boy, who has an amazing Momma and family! It makes me so upset to see the things people say to you, especially when they have NO idea what it is like for you or Tripp. Mabye they should walk a day in your shoes, then their opinions might change a bit.. I wonder how easy it would be for THEM to follow their own opinions, if it was their child....
    I hope you all have a beautiful holiday, and as always I will be thinking of you and Tripp, everyday!!

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  164. I pray for you and your little man. You are an awesome mom doing what needs to be done for Tripp. And through you videos and pictures I have come to know and love you little man. But the ones who really need prayers are the ignorant people who make those comments. God help them. My your holiday be blessed. Merry Christmas to you, Tripp and your wonderful family.

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  165. Courtney and Tripp, I am so delighted ABCnews.com did a beautiful article about your story together and bringing much needed awareness to EB. I pray for a miracle and a cure for Tripp, and all EB sufferers. My little boy, also 2, mailed out a special ornament for Tripp and we hope ther's still room for one more! It's scheduled to arrive this Wednesday. That's wonderful you all needed to get multiple trees to support all of Tripp's ornaments. I came across this quote today and thought you may find some comfort in it- "Sometimes God calms the storm. Sometimes He lets the storm rage and calms His child." Much love and many butterfly kisses to Tripp!

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  166. I read your blog post and was moved to tears - moved by your strength and your love for your son. You are an amazing won, driven to care for her son the best she can. Though I may be but another soul wandering through your blog, I hope this message helps you through the tough times and to hang on to the love that you have.

    Much love.

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  167. So sorry you have to deal with negative comments and people. You are doing an amazing job caring for Tripp and spreading awareness for EB.
    We continue to pray for you and Tripp daily. Sending you many hugs and much love!

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  168. Bless your heart Courtney...you should not have to write this kind of a post, you most certainly should NOT have to defend yourself for doing your absolute best for you sweet baby boy. Keep right on doing what you are doing.....God sees and Tripp knows.

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  169. Its sad to see what the world has come to, with such nasty comments towards a disease that no one can help prevent. I have followed your story for a while now and commend you for everything you've done. You don't need my praise or anyone else's to know that you are a GREAT mother. You know you are the best mother Tripp could ever ask for and he knows that you are! He is YOUR child and no one else's! No one can take that away from you or tell you how to be a better parent to him unless they walked in your shoes for a day. I know it must be hard, but you should try not to listen to the nasty comments that many people will make. As long as Tripp is happy with you, then you're doing a very good job indeed! God bless you, your sweet boy and your family for the incredible job you are doing!

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  170. I am so sorry you have to deal with such negativity. Please don't get discouraged, lean on our Heavenly Father's loving arms! I hope your Christmas is Merry and you get a big smile from your little Tripp!!

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  171. You are a mommy to a beautiful child. That's all that matters. Love. Merry Christmas to you and your little one...I wish you all the best.

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  172. Dear Sweet Courtney,

    My heart truly aches for you! I wish you didn’t feel compelled to defend your LOVE for your precious little Tripp! The mean/spiteful comments or the remarks simply made out of ignorance are certainly not warranted! You are such a sweet and compassionate spirit. I admire you in so many ways and feel sad when you are barraged with such unkind comments! There is NO way you could improve upon the quality of treatment or depth of love that you generously bestow on Tripp and I know he understands and feels your love.

    I have read every word in your blog and watched all of the videos. Sometimes I laugh and sometimes I cry! Either way, I am deeply moved by your story and will be forever changed!

    My prayers are with you, little Tripp, and your mother - every day and night and always in between! You are the most remarkable young lady that I have ever 'known' and I know our loving Father is well pleased with you and your care and concern for your precious boy!

    Courtney, hold your head high and understand we are cheering you on! You are a hero and the voice for thousands of children who suffer from this insidious disease and for the parents who experience many of the same struggles as you! God is with you! So are thousands of others who are now aware of EB and the devastating effect it has on the lives of those who suffer from it!

    We are praying for God's Divine Intervention, with a miraculous healing for Tripp. We have come to love you and Tripp and will always stand with you and support you with our prayers.

    Warmest regards!
    Noni Knapp

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  173. I am so sorry Courtney you had to endure the stupidity of others. I have learned to pray for those people like that. I have learned so much from your story and not to take my children for granted in any way.

    Blessings to you.

    Shari

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  174. First, I must tell you how amazing you are. Second i am in tears that you have to deal with inhuman like people in this world. People can be awful. Remember, you do not owe "those" people any explanation. None at all. "Those" people will one day face their ugly souls. You keep your head up and keep reaching out because there are beautiful people in the world who are out here, waiting to embrace you. I too am a mother. My child was born with craniosynostosis. This is nothing like what your child has to go through and I can't even begin to understand the pain that you must endure every day knowing that you are limited in how much you can do for him. But you are loving him more than most could even fathom. That in itself is such I gift to him. I applaud you! You put your story out there to help raise awareness! You put yourself out there and you are smiling strong through it! That takes an AMAZING amount of strength! If you were a pile on the floor too depressed to move, well what good would that do him? You are doing what you need to do! I think having a blog is healing and I can tell you that people like you who put blogs out there SAVED people like me who were lost when their tiny baby was handed to them with a "but". Your strength alone helps other mothers and parents out there. Even if they don't have the strength to comment, even if they don't stumble upon your blog for years. You are helping people and raising awareness. It's a gift to the world. If you see something negative, don't finish reading it, delete it. Get a friend to proof read comments and delete the ones that don't belong before you see them. This little guy needed the perfect person to care for him and that is why he was born to you. Sending you and your sweet little guy all the best.

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  175. p.s. and looks like I am now a blogger member! Ha ha. Maybe I will post my story :)

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  176. Dearest Courtney as an old nurse, I know you have boundless heart and courage and what a truly amazing mom you truly are....people that leave comments that are heartless or ignorant do need educating ...and I am grateful that you shared your story and that ABC is trying to educate people....many prayers and light to you and your family...and your little one....namaste

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  177. Saw your story on ABC your such an Inspiration !! People you touch out weigh the people saying mean things! We had our son around the same time as you and I look at my son now and think of you imagining how your 2 years have been!
    Our oldest is 4 and has Autism when the Dr didn't know if he would ever talk I thought that was so heartbreaking and not to compare my journey to yours but I have learned what you are learning which is patience and selflessness! I also surround myself around positive people who add to my life!
    Thank you for your story!
    All my love!!! And prayers!!!

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  178. I can't believe people could be heartless!!! I have been following you for about 3 monthes now.... I don't think a day goes by where I don't think about you :) you are are a wonderful mother!! Your mom reminds me of my mom she is always by your side!! Thank god for our moms! I wish there was a way to delete stupid mean comments before they are even sent!!! Please know we are all here for you!!! We support and pray for you!!!

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  179. I cried when I just read this, and I am at work. My tears were of anger at anyone - ANYONE - who could say anything negative about you Courtney as a mom or sweet little Tripp who is a warrior in every sense of the word. As a NICU nurse who has seen this hideous disease first hand and have followed your blog - and fallen in love with you both - I agree that little is known about EB and education is the key. Still that does not or ever will excuse people criticizing you for your care of YOUR son. I am so sorry that you had to read those hurtful words and feel the pain they caused. I am so grateful that the number of us who love and support you OUT number the ones who don't. Hang in there Courtney and keep doing what you do best - Loving that precious boy the way you do.

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  180. I am amazed at the strength of you and your little man. You are remarkable and such a good example of what it means to love. I am sorry that there are ignorant people out there that want to spread misery instead of happiness. Keep strong. We will keep your family and especially Tripp in our prayers.

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  181. Wow. It is so sad people can be so cruel....
    YOu. On the other hand are one amazing mum. And I only just read your blog for the first time.. I can not imagine the life you Are living right now but I Do know this. God must have thought you a very special person to give you such a special baby. Hugs to You....

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  182. Courtney, my heart hurts!

    Oh, beautiful lady, I am so sorry that you've been given the task of being the Mommy to such an amazing boy with such a hard, painful life. You're stronger than the tallest oak.

    Admittedly, the first time I read a post from this blog (a few months ago), I too thought "Gosh, how selfish to keep that boy alive," but after going through and reading almost from the beginning and educating myself about your situation and Tripp's EB, I have to say that my whole heart did a complete 180*. Your little guy is alive and fighting and there's no way that any mother in her right mind could just suggest to "put him down". How gross a thought. I have a 6 month old boy and as I went through your posts, I forced myself to put sweet Roman in Tripp's shoes and me in yours and everything fell into place and I realized the stupidity of my initial assumptions. Tripp is an an amazing individual with a superior soul. You are an amazing, strong selfless mother with a heart of gold. Your mother is a Superwoman. I am sending only best and happiest thoughts to you three and I hope you are able to have a love filled Christmas. Bless your heart, sweet lady.

    xo,
    Violet

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  183. I posted this to ABC...I hope this is something that can give your some peace.

    GOD DID NOT DO THIS TO TRIPP! "Free Will" did this to Tripp! Courtney chose a husband! That was her "Free Will" given to us by God! She had no idea this genetic disease even existed!!! She would have never knowingly put her baby through this!!! Our Lord is a heavenly, loving father that would NEVER want to hurt us! He aches for Tripp's pain as we all do! God sees us face trials and tribulations in our lives after our choices are made as a result of our "free will". Being the amazing, loving, Lord he is....he finds a way to bless us even throughout the hard times! He brings blessings out of the hardships! We as parents do the same with our own children! We say "Do not touch that hot stove". We try so hard to watch closely to make sure our child does not touch the hot stove...but sometimes it happens and the child gets burnt! We then turn and try to make everything better! Ice, Bandages and Scar Treatment! We make the best out of the situation!!! The Lord is doing just that....he is bringing so many blessing to so many people through Tripp's story! NO ONE would want this child to suffer! Courtney is doing what any loving Mother would do!!!! I praise her efforts and her decisions! God bless you Courtney and Your Family!!! God Bless Tripp!!!!

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  184. It is amazing that people would think you would choose this for your son and your family! I am a new supporter of this disease and I am so glad to have been given the chance to help out in any way possible. I send you big hugs and lots of love and prayers for you and your little man for truly he is a man in every sense of the word. Mother Teresa would have called you a saint!

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  185. I have never posted on your blog, I merely know you through the internet, FB an EB groups. I am 32 and have RDEB and am grateful EVERY DAY for You, that you were chosen to be Tripp's mom, the kind of Mom who will go to the end of the earth and back for your child, EB or no EB. It is Moms and Dad's and Grandma's and Grandpa's, Aunt's and Uncle's like you who make those of us dealing with the struggles of this disorder worth waking up to another day. He wakes up every day and fights for you, so he doesn't have to lose you, you are his world, his happiness, just as he is yours. I know it is hard to hear those ugly comments from people who do not know you, but that is just it, they do not know you, they do not know or even fathom to understand the struggles we bear every day with this disorder. Thank you for bringing SO MUCH awareness. Thank You TRIPP for being a shining beautiful light for others to see.

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  186. Don't let the negative comments into your head or into your heart. The world is full of evil, mean people who will never understand- no matter how hard you try, you can't change them. People kill, rape and murder each other every day. You are witnessing another form of evil which is to judge and try to hurt with words. Let the people who support you into your heart and mind. We understand and have love for you and Tripp.

    I pray for your strength. It's not going to get easier. You've let these people in now shut the door on them.

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  187. dear Tripp..u r a hero!a fighter!ur mama loves u more than anything on earth.Courtney,dont ever let those idiots hurt u. just ignore them! u've done a great job by letting us know about this EB which is so never heard of in our country,Malaysia..thanks to u..wishing u guys all the strength and courageous!

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  188. Our thoughts and prays are with you and your amazing little baby... I was amazed when reading your story from the newspaper, you are such a strong and good-hearted human being! Huggs from Finland

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  189. It brings me to tears when I read your post and you are having to defend yourself from peoples negativity.. but I think that people let their ignorance get the best of them.. I remember my priest one Sunday in church said "God put us on this earth to love one another.. God is the only judge and we will each face Him one day.. but is God going to be more proud of you for loving one another unconditionally or because you chose to hate, discriminate and tell other people what is right or wrong.. that is not our place.. our job is to love, support and take care of each other".. nobody knows what you are truly going through and what God's plan is for you and Tripp.. I admire you Courtney.. you are beautiful and strong and brave and so caring and so loyal to our Lord.. God blessed Tripp with you because he knew you were the best mommy for him and in following out God's master plan.. "the Lord has made everything for his own purposes" Proverbs 16:4.. I truly believe everything happens for a reason and what is meant to be will be.. "we can make our plans, but the Lord determines our steps" Proverbs 16:9.. continue with God and let Him be your strength.. not many could do what you do and that makes you special..

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  190. i agree with Chatoyant.sparrow ... Hats off for you man... and my prayers are with you.May GOD Bless you with health.
    Orlando taxi

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  191. Hi and greetings from Finland!

    I read about your story in Finnish newspaper and even though I don't know you or your family, I wish all the best to all of you! You're incredible brave mother and it's wrong that you have to hear negative comments from random people! Who do they think they are!

    All the best to you and your family and Merry Christmas. I hope Santa spoils your little man a lot! :)

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  192. It's amazing how you cope with all this and I really prize that. You're such a great mom and Tripp is so cute and funny!
    I wish you all the best. Merry Christmas and Happy New Year from Finland! :)

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  193. Courtney,
    you are a wonderful mom, a precious gift to Tripp. You are making every decision based on love, what more could you do?
    How anyone could judge you, is beyond me.
    Tripp is a blessed to have you, Im praying for him and you, and your family
    .

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  194. I hate that you even feel you have to defend yourself... I would too in the same situation, but I know your energy is spread so thin so it angers me that people comment heartlessly and without educating themselves and make you use your energy on them. But you handled it with grace! You are such an amazing mom!!!

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  195. This makes me cry. Its must be really hard. Prays for you:) Spend happy christmas:)

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  196. You shouldn't have to justify yourself to people you don't know, people who don't know you and certainly people who leave nasty comments. If you find them on your blog, delete them and move on. They are just like you said, uneducated and not in your situation. You are an awesome Mommy and are doing the right thing.

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  197. "For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you." (Matthew 7:2 NIV)
    Keep your head up and your FAITH higher and God will take care of ALL!!

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  198. "For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you." Matthew 7:2 NIV
    Keep your head up and your FAITH higher and GOD will take care of ALL!

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  199. Courtney-
    I can't believe people would be so mean to say things like that. Please know that we pray for y'all everyday. This is the first time I have commented, even though I have read your blog for quite some time.

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  200. Please don't listen to the negative comments. I don't think people think about what they say before they spout it out all over the internet. Or they just want to start an argument. I have noticed that people are consistently sharing their unfounded, disrespectful opinions on news stories on news websites. While I don't know you, I can tell you are doing everything you need to do for your boy. He knows that and he loves you so much and that is what you should focus on, not the ignorant, arrogant people out there. Sending love from Virginia!

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