Thursday, November 3, 2011

Because of you, EB.

Dear EB,

Because of you, my child does not know a life without pain.  
A simple touch causes him pain.

Because of you, my baby does not live the life that a child should live.

Because of you, he can't even be around other kids.
 We've never been on a play-date.
He has never played in the dirt.   

Because of you, my TWO year old does not know what the park looks like. 
Or what a bike looks like.
Or what a dog looks like.  
Hell, I don't even know if he remembers what his MOMMY looks like.  

Because of you, my son has never spoken a word.
He cannot say "Mommy." 

Because of you, he lives with a tube in his throat... and still has trouble breathing.  
When something is wrong or something hurts, he just cries big tears and can't even tell us what is wrong.

Because of you, he cries to get out of bed in the morning because he knows he has to have his diaper changed before he can rock-rock.  

Because of you, ALL HE WANTS TO DO is rock-rock.  
(I mean LITERALLY- that is ALL HE WANTS TO DO). 

Because of you, when I say the word "bath" my child does not get excited and ask me if he can add bubbles to the water or bring toys along... instead he cries and gets extreme anxiety thinking about how painful it is.  
And I am the one inflicting the pain.

Because of you, he has no idea what it is like to actually sleep through the night. 
He doesn't get to "snuggle" with his Mommy before bedtime.  
Or any time.  
Because every touch is painful to him. 

Because of you, I have a mini Pharmacy in my house. 
And I could possibly build a small house out of the bandages and ointments he uses in one month.

Because of you, my son has not be outside in literally over a year.  

Because of you,  I cannot go swimming with my son.  
 I cannot take him to the zoo. 
Or the movies.
Or to a friend or family member's house.
Or take him ANYWHERE for that matter. 

Because of you, my child is so confused as to what "hungry" means or what "full" means.  He gets fed by a tube 3 times a day on my time, not his... because he can't tell me when he's hungry. 
And if he does feel hungry enough to put something in his mouth, it hurts too bad to keep eating.

Because of you, my baby has infection eating away at his raw sores. 

Because of you, he never stops itching... not even after his bath.  

Because of you, my child could not dress up for Halloween this year... and he has never been Trick-or-Treating.  

Because of you, he spent last Halloween in the hospital, and this Halloween in the rocking chair, crying while holding his stomach in pain.  

Because of you, last Christmas my son was too sick to enjoy a single toy from Santa... and this year, he will not be able to see his Christmas tree, his ornaments, or any of his presents. 
That hardly makes it easy to get in the "Christmas Spirit." 
But then again, you make NOTHING easy. 
He won't get to help me "bake cookies" for Santa, or he won't be shaking me at 5 AM on Christmas morning to wake up so he can open his presents.  

Because of you, I have a feeling of absolute helplessness and disgust in my stomach every single day- whether I am smiling or not.  It never goes away.  

Because of you, I secretly laugh inside when someone complains about something.
I can't help it.  I try not to laugh out loud.  But it's humorous the things people complain about.
Because to me, my son is the only one who needs to be complaining... but he doesn't. 
 He smiles.  
You know why?  
Because of me.  
Because I am the BOMB at pretending like I don't hate you for what you have done to my baby.
My heart constantly feels like someone is giving it an "Indian burn"... twisting it in knots. 

Because of you, I feel as cold as ice... just plain emotionless and heartless sometimes.  
Almost like I can't understand why everyone's life can just go on while my baby is suffering.  
Shouldn't the world just stop... Because of you? 

Because of you, my only child's life is slowly deteriorating before my very eyes. 
And because of you, there is nothing I can do about it.  

But I will beat you.  
My son may or may not have the chance to beat you, 
but I will. 
You might think that you can win, but you can't.  
I will not stop until the mention of your name is known across the world.  
Until the doctors hear of you and say: "Psssh, EB?"
 "That's nothing, we can fix that!"
Because of you, it is my goal that no child should suffer like mine does. 
Because NO child deserves this pain.
Because NO parent should have to be making the decisions that I am making.
And NO life should be taken, 
BECAUSE OF YOU, EB. 



Love, Good Riddance, 
Photobucket

238 comments:

  1. I have no words ((HUGS). That picture is beautiful

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  2. You are in my prayers daily that they find a cure, may god take the pain away from your little man and give him strength to overcome this HORRIBLE thing we call EB xoxo

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  3. we're with you. every step of the way. till we all reunite in heaven many years from now and we watch as Bella and Tripp have the ULTIMATE playdate on the ULTIMATE jungle gym in the ULTIMATE park... until then, we're right there with you. every step of the way. endless love from us to "y'all," Tim & Angelique

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  4. I'm not sure if I've ever commented, but I've been reading Tripp's story for a long time. I've posted info on EB on my fb page and told my friends about it. I wish there was a way I could find kids with EB near me and help their families. The picture is beautiful and if there is any way I can get involved more please let me know. You have a wonderful way with words Courtney, it's an amazing gift and Tripp is so lucky to have such an amazing Mommy.

    With Love to You and Tripp,
    Sara, 21, Fellow EB Hater.

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  5. God Bless You, you are a special momma. I am a mother of a daughter with special needs and I can relate on some level but not like this. I can't imagine your life not being able to take away Tripp's pain. I pray that the journey you are on will bring your family out stronger than ever and will bring deep lessons you can share with others going through the same thing. I have never heard of this EB before. Thanks for spreading the awareness.

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  6. I'm in shock. I've never heard of EB before and I just happened upon your site now.

    Please forgive me for all my stupid stresses.

    I'm praying for you and Tripp now as my eyes form tears.

    I am so sorry.

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  7. Because of YOU, your precious baby knows love and commitment! Because YOU choose to share his struggle he can bring others joy and hope. God bless YOU!

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  8. I'm speechless. I pray for a cure, peace and comfort. So sorry that your lil angel has to experience and endure so much horrible pain. Lots of Love to You Both!

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  9. Courtney, please let me know if you'd like to share your story at our blog http://www.5minutesforspecialneeds.com

    We'd be honored.

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  10. Very powerful words Courtney! THANK YOU! I think about you and Tripp every day!

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  11. Courtney,
    My heart breaks for what you are going through but I know God is faithful. Wish I lived closer to be able to come and help you and rock your little treasure. Our prayershave been with you all since I first came across your blog. We are from WI but would love to help in any way. Please let us know how we can. Many blessings! Youy are a beautiful family inside and out!
    Love the Funks!
    www.campfunk.blogspot.com
    funk50@charter.net
    Jill

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  12. What a blessing you are to your sweet baby. And what a joy to see what a blessing his life is to you and so many others. You are in my prayers!!!

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  13. I don't know what to say...except that my thoughts and prayers are constantly with you. You WILL beat this.

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  14. Praying for you and Tripp today and always. xoxo

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  15. Because of you, Courtney, your little boy truly knows unconditional love and commitment. Because of you, Courtney, the word is spreading about this horrendous condition. I believe in miracles and I will continue to pray for your sweet "earth angel."

    We are taught not to hate but I can honestly say that I'm a fellow EB hater.

    I haven't met you but I would give ANYTHING to take Tripp's pain away.

    Love-
    Mary and baby Jackson

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  16. My heart is aching after reading this. The picture put icing to my cake. I love your blog. I literally HOPE everyday you have an update. I can't say I know what you are going through, or Tripp, I don't! I do share information about EB and I have your button on my blogs, both of them. Your family touches me all the time. I pray they find a cure and you are the biggest fighter I know. I complain over little stuff, but this makes me think twice about it.

    Xoxo from Wilmington NC

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  17. I had an "AHA!" moment yesterday - my 14-month old has a bad diaper rash, and has two quarter-size spots that are raw and bleeding. Two spots, that it. I thought to myself, "Tripp and Courtney deal with this x1000 EVERY DAY." It was humbling, to say the least.

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  18. Praying for you and Tripp. You are absolutely amazing. I know your unconditional love for Tripp gets you through each pain-filled minute of every single day. I love you and your little drummer boy! May God bless you and your wonderful parents!

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  19. Courtney,
    Very Beautifully written. I am so sorry Tripp has this awful EB and you have to watch him suffer. I am grateful and appreciate things because of you and Tripp. What an example you are to so many. Continued prayers for Tripp and you as you make decisions no mom should ever even have to think about ((((hugs))))

    Debby

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  20. Courtney,
    No matter how helpless you feel, you are so very strong. You and Tripp are continually in our prayers. Love and hugs from Tennessee.
    Tabatha

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  21. The picture of you and Tripp at the end was breath taking and heart breaking. My heart (and mind) ache with you. Praying for a cure for EB and please know, you and Tripp are in the prayers of thousands every day, including me.

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  22. Poor Tripp and poor Mommy. You are right, it is so heartbreaking that he has never done those "normal" things that most little kids get to enjoy . . but he is also impacting the WORLD in a way that no "normal" child will. Tripp is suffering, and that is NEVER ok, but he is saving so many people from their daily "complaints." He (and you!) are making parents everywhere more aware. I sit and watch my son, also two, do those "normal" things and think about how LUCKY I am because of you and Tripp. You will never know how far your ripples go, and how many people LOVE Tripp. Me included. I wish we could all take just a fraction of his pain and leave him with none. I know you don't know me, but I feel like you are a friend of mine by the information you share about your life. We are all in your corner, and Tripp's too!

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  23. Your strength is unbelievable. Tripp has got to be the luckiest boy in the world to have you as a mother. No one should ever have to experience this kind of pain, it breaks my heart. Thank you for sharing and educating us all on EB.

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  24. You are such a strong and great mommy! Praying that the Lord brings great light on EB for doctors to handle.

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  25. May GOD have mercy on Tripp. I can't even begin to express my hurt inside for Tripp. EVERYTIME I see Elmo, I smile because Tripp has introduced me to real happiness. I actually catch myself singing TRIPPS song!
    This was an emotional post, I can not even begin to imagine the real hurt your heart has to watch your beautiful little baby suffer. I know you said you have a hard time watching & hearing what we complain about & what we are grateful for. But please know, Tripp & yourself {Your writing} has changed me as a person. I would say I've always had a big heart, but gosh since I've been introduced to this blog I have had many different outlooks on life. Tripp has inspired me to stop and just think of what he goes through e.v.e.r.y S.I.N.G.L.E second of his life... in moments when I'm complain over worthless stuff.

    It breaks my heart to know he can't cry, play, or even dress up for halloween. I do not understand why Tripp has to suffer as bad as he does... or even at all. It breaks my heart. It breaks my soul.

    Courtney, you are such a strong person. I admire you and I hope and pray that I am just as strong as a person and a mother {when that day comes}. I've said this before, but I can't say it enough. You are a true gift to Tripp & the definition of what a 'MOTHER'S LOVE' really is.

    My GOD has mercy on Tripps body.

    XoXo Love from Statesboro GA - Jessica Drew

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  26. Praying for you and Tripp and other familes with children with this disease. May God continue to bless you in caring for him and bring a cure quickly......

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  27. Praying for you and Tripp ALWAYS. That picture is beautiful.

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  28. I am so sorry this is happening to Tripp and you have to endure this pain together. I have Behcets and went 2yrs undiagnosed with hundreds of ulcers in my mouth and throat while my dr.'s just shrugged their shoulders. I know that excruciating pain personally, but it was just my mouth and it wasn't my child. God is there, even with the pain. He is using you in big ways. I am praying for a peace that passes all understanding for Tripp, you, and your family.

    Have you tried an antihistamine coupled with Zantac for the itching? The Zantac blocks histamines that benadryl and the like don't. I had intense hives daily from March until July and finally found this drug combo info via a mastocytosis website. Just a thought.

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  29. If only tears could heal Courtney, because the people who follow this blog would have healed him already.

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  30. Y'all are in my thoughts every day! I don't know what to say because there are no words. I try to put myself in your position, but I cannot. I can only imagine the pain your precious baby is in and the pain you are in having to watch him endure it. I pray for peace soon for that precious precious child. I think EB is the most horrible disease I have ever heard of and I pray that one day doctors can eradicate it completely so that not one more child ever has to suffer like your precious baby Tripp has. You are a wonderful wonderful mother, I hope you realize that you have given Tripp the most wonderful life he could possibly have. He knows such love.....

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  31. Beautiful words. A beautiful picture. I am ashamed that I complain when your journey requires strength I can't imagine. Thank you for sharing your journey, Tripp's journey. It is an honor to read.

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  32. We're all frustrated right along with you, Courtney. We may not not your pain or his pain, but just to know that you are both hurting to very much break everyone's heart, to be sure. Keeping you all in my thoughts and prayers. What a beautiful picture of you and your baby.

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  33. I pray for you and Tripp everyday. You are an inspiration to me, and it is clear to me that you are infinitely strong and full of grace. May the Lord bless you and your precious little guy.

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  34. I just wanted to let you know that when I feel like complaining I think about all that your beautiful Tripp is going through and I shut my lips. I pray every night for God to give him a miracle, for Tripp to have a peaceful nights sleep, and to ease his suffering. You are an amazing mom and I just want God to make this better for Tripp! May God bless you and Tripp.

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  35. God bless you and your sweet baby boy.

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  36. Just know that This Ozark Farm Chick often prays for you and your sweet baby boy. Sweetie that is the most precious picture ever!!!

    Tripp is just a precious doll.

    God bless you and your family, I wish I could do something for you my dear.

    Hugs and prayers...Nezzy

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  37. Hi Courtney: Wow, what a post today. I am so with you. EB can rip your heart out and bring you to your knees.
    Tripp is ALWAYS in my prayers. Praying for your awesome family. Please take care my friend. Love and Peace Leah's Nana

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  38. I'm with you too. Every step of the way. We will never stop.

    I love you.

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  39. That is such a sweet picture. Our stories are so VERY different, but my son passed away in January, and I can relate to what you said about people complaining and the holidays. So many hugs to you and your sweet boy. I think of you often.

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  40. Courtney - You are such an amazing mother. I pray that you are given the strength to continue your labor of love, that Tripp is a pain free as possible, and that a cure for this horrible disease is found. The picture of you and your precious boy is amazing and one to treasure. I vow to never take my girls for granted...

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  41. Heart breaking. We are praying for you and Tripp. The picture at the end is beautiful. You can tell Tripp loves his mommy.

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  42. Courtney,

    (I sit here in tears as I write this.)

    I am a recent follower of your blog and am absolutely, shamelessly addicted. You are one HELL of a woman- I mean that from the bottom of my heart. I have never seen such heartwarming, unconditional love bestowed on a child before. You give me hope for when I deal with my "tough times". Please know that you are now forever in my thoughts and prayers.

    I know I live in Texas and there is not much I can do from this distance, but PLEASE let me know if there is anything I can do for you and Tripp.

    Your hope and faith is a beacon of light for me in this dark world.

    Krisha
    Matthew 7:7-8

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  43. Courtney,

    Because of you and Tripp, i don't take any minute for granted with my girls. Everytime i wake up during the night because one of them needs me to hold them, I am grateful that i can put my arms around them and they find comfort. This moring i woke up sore and tired because my 7 month old wanted to be in my arms all night. She pulled my hair the whole night while my 2 year old laid beside me and kicked me in my kidneys. BUt i am so grateful that they could be so near to me without being in pain.

    I am so so so sorry you live the life that you do with your beautiful son. I pray, my husband prays and our 2 year old prays for your son and for your family.

    Because of you, i learned about what horrors EB brings to families. How EB tortures an innocent life. Keep strong, fight! We'll continue to spread the word.

    Today, i pray you find peace.

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  44. My daughter has SMA type 1 and we fight for her life everyday also, and your story about people complaining is so true, if they only knew so of the things that our children have to go through, maybe the little things in theirs wouldn't seem so BIG.. I'm so sorry you and your family have to go through this, and it is heartbreaking on so many levels.. May GOD be with you and your family, most of all Tripp, he is the tropper in all this.

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  45. This is beautiful and heartbreaking and I am so very sorry for you pain and Tripp's. What a terrible disease. Consider the word being spread.

    Much love,
    jana
    bandbacktogether.com

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  46. This is so honest and heartbreaking.

    I'm praying for you and Tripp today. So many prayers.

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  47. I can only imagine how much you're going through , how much Tripp is going through. I'm totally on your side, thinking of you, and praying that Tripp and you both find peace.

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  48. I am so very sorry that your beautiful boy has to endure such pain - it breaks my heart. I'm so glad he has such an amazing mom, though. Sending you both buckets of love. <3

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  49. Because of you the world is a better place.

    Because of you your son lives surrounded with love.

    Because of you those who witness your strength or inspired to live a gentler life.

    My heart and prays are yours, may you find gifts in the unexpected and continued strength beyond what you though you had.

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  50. Courtney, I was introduced to your site today, and have been here for nearly an hour, reading, looking at photographs, watching videos. I'm in tears just visiting, my heart breaks for you, and it breaks for Tripp. You are a woman of strength and selflessness, I have so much admiration for you. I know that there are days that all you heart does is break, but you continue on. Tripp is a handsome young man Courtney and that smile melts the heart.
    Love to you and Tripp! We'll be praying for him at our house!
    Kristina @ A Perfect Dose of Life

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  51. Courtney... Thank you for your brave post. You have to, MUST, know that we all stand by your side. You are human and have your anger, your feelings of being emotionless and heartless. When we tell you that you are an amazing mommy, that we admire you... we are not putting you up on some pedestal in some abstract fashion. We are saying that because you have to deal with so much hard reality and you do it despite all these overwhelming, very human and understandable feelings. You do it with grace and love and courage. You never stop fighting despite all the heartache. We see in you a strength that we could only imagine we could have if in the same situation. Thank you for sharing so much of yourself- all of you. No one ever expects you to sugar coat anything or keep it cheery all the time(you are wonderfully funny). I want you to know that we are here, praying for you and stand by you and Tripp and your family during those moments of despair at your sweet little boy's suffering. The world may keep moving forward, but we move forward with Tripp in our hearts. He is not far from most of our minds. Prayers to you... Tracey

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  52. I'm sending you and Tripp lots of hugs, kisses, prayers and love! Your strength and resilence are not only admirable but also inspiring. My thoughts are with you and your beautiful son. I hope you have many more years of joy together and a lifetime of love. I also hope a cure can be found to make Tripp's quality of life much better. XOXO

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  53. You are a beautiful mommy with a beautiful baby. May God continue to surround you with his peace and grace.

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  54. Hugs from Ohio. Bless you and Tripp with comfort.

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  55. Courtney, I found your blog a while back because of Jonah. I hadn't been on in a while but a friend tweeted that all should come read this today. I echo what many said...you are a strong, loving mama and Tripp is LUCKY to have you. You and Tripp are often in my thoughts (As are Patrice and Jonah and a lot of the other EB babies and their families). Sending lots of love....

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  56. this is unimaginable. keep your strength and may god bless you and tripp. you are in my thoughts.

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  57. You are an amazing woman, and an inspiration to us all. Your story is heartbreaking but in the center of it all is a ray of joy in Tripp. Thank you for spreading the word about EB and for putting life into perspective for me. You and your family will always be in my heart.

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  58. I believe this can be very unbearable for you to sit back and watch your son suffer day in and day out. I ache for you as I sit here and read about you suffering day in and day out. There is nothing I can do but pray for you and Tripp.

    Praying and praying,
    <><

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  59. You are such a strong and inspirational person! Keep your faith and know that Tripp is a special gift from God! We are praying for you and your family here in Iowa :)

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  60. And because of Jesus and His sacrifice, you will see Tripp well! It may not be right now, or even on this earth. But oh what a blessing, Jesus has defeated death and the grave!! And heaven awaits those who believe!! There are no tears in heaven, no worries, and NO EB!!! I pray daily that God will heal sweet little Tripp, and that you and your family will be blessed. But if God calls him home, you have the promise that you will see him one day, well and happy!!

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  61. Your story is so incredible and inspirational. And I will be sending you, Tripp and your family my prayers. Thank you for educating me on what EB is. You are a very strong mama and your unconditional love for your son is heart warming. May you and Tripp be blessed with more time to just love and hold each other.

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  62. Dear Tripp

    I would say 'what a brave little man' but this life is all you know and the experience you have every second is normal in your world. So instead i'll say 'What a strong, honest and loving little man you are'. May you find peace in small moments each day and freedom from pain in your dreams each night.

    KateB, New Zealand

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  63. Sending love to you, Tripp, and your family!

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  64. I had never even heard of EB before coming upon your son's story.
    I talk about it to everyone I know. So many people have no clue.
    Whatever I can do to help. Even if it's just to get people's attention that this disease exists.
    You go girl! Kick EB's ass!!!!

    Give Mr. Tripp lots of soft sugars for me. :)

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  65. This post breaks my heart. I can't fathom what you are going through. Not even a little. But I wanted to join the chorus of voices telling you that we are standing behind and beside you.

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  66. Courtney, your words are beautiful, as is your son. May you find peace in a horrible world and comfort in the love of your son. I will be praying for you every day -

    Love,
    Emily

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  67. I am so sorry. There really are no words. I can't imagine. Praying that God covers you and Tripp with the peace only He can provide.

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  68. I have no words, just tears that your child has to face this day in and day out, and that you, as his mama, have to face with him. God Bless your family, and your heart.

    Lisa

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  69. I am praying for you. I also did what little I could by donating via text. God bless you, little man. Know you are so very, very loved.

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  70. I think this is one of my favorite posts. You always have me either laughing, in awe or in tears. You make me stop to put life into perspective (to not be that mom who complains that her child is teething or won't eat a good meal). I'm in awe of all you do and how much you love Tripp. I look at Tripp and my heart cannot feel anything but love for him. He amazes me. His rhythm is beyond his age (you have a little prodigy). The picture of you two with his hand on your face is priceless. I just love it! Thank you for sharing your life with us all and for spreading the news about EB. Before you, I had never even heard about it. Thanks for all you do.

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  71. I've only just discovered your blog today, and had never heard of EB as well. I'm speechless, and crying my eyes out. You're amazing Courtney; as is Tripp. Going through the pictures is heartbreaking yet inspirational. His big beaming smile is absolutely awe-inspiring in contrast to everything that he, and you, have to endure. I'm completely in awe of both of you, thank you so much for sharing all of this.

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  72. I am sure it is no consolation to know that you have touched--and changed so greatly--the lives of every single person who has read your story. Not a day goes by that I don't think of you & Tripp. You are amazing--and today's photo is absolutely beautiful :)

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  73. Courtney, because of YOU, one voice added to thousands will make a sound that cannot be ignored. Because of YOU, there are thousands of warriors lined up to fight with you to defeat EB. Because of YOU, Tripp's suffering is not in vain.

    Thank YOU, for sharing and letting me invest in Tripp's life. Thank YOU for showing me what true and pure selflessness and love are. Thank YOU for changing my life perspective. Thank YOU for finding the strength to continue to fight and perservere. THANK YOU.

    P.S. Seeing Tripp's little hand reaching for his Mommy.....gorgeous.

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  74. no words.. my heart breaks for Tripp. What a lovely lovely little boy.... prayers for you two.

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  75. You are such an amazing Mom Courtney! Tripp is a lucky boy, because of you. I am not going to even pretend to know what you are feeling, but know this we are all here. You and Tripp are in my daily thoughts and prayers!

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  76. Courtney,

    I've read your blog before but today I had some time to stop and really read through some of the entries. This picture is a beautiful portrait of the love between a mother and a child.

    If there is anything I can do other then pray, please, please, let me know!

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  77. My heart is aching for you and for Tripp. The love between you two is palpable. You are the bomb at far more than just pretending not to hate EB. What a gift that he got your for a mom. And what a gift his sweet soul is to you.
    Love and light to you both.

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  78. Wow - this is such a brave and heartfelt post Courtney, and one that I hope was cathartic on some level. Your beauty as a woman, mother and carer is evident across this whole amazing blog. You and Tripp are in my thoughts from the other side of the world, and I send you much love and strength as you continue on your journey together. Thank you for sharing your son with the world; his face and smile are all that is needed to remind us of the importance of gratitude and whole-hearted love.

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  79. My heart aches for you and little man Tripp. You are a beautiful person and God is watching every move you make and he will take care of Tripp and you when the time comes!! Your blogs are the best. As sad as some are, I enjoy reading them because I can just feel the love you have for your little man and I know what that love is because I have a little boy who was born a few days after your little man was and I am totally obsessed with my son. Anyway, your blogs are very sweet, and inspiring, and just out right amazing and I honestly do think you should write a book or poetry one day. You have a beautiful heart and soul and God will take of the both of you!! God Bless and stay strong!

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  80. Because of you and Tripp I know what EB is. Because of you and Tripp I value each moment with my healthy child more. Because of you and your amazing, beautiful boy people are learning about this terrible disease. May God Bless you and Tripp. Prayers today and everyday.
    Mary Ann-Indiana

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  81. Your words and your son are beautiful. I think we get whatever we get in our lives (no rhyme nor reason) and it is the style and the grace and the grit and determination by which we can be measured. You obviously have all four of these. Sending (((((HUGS))))) from Vancouver, BC. And sending Tripp ((((((VIRTUAL HUGS))))) too because those don't hurt. It is what I have to offer. Thank you for educating me about EB.
    karen

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  82. Crying. . . I'm sooo, sooo sorry this is Tripp's (and your) life.

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  83. I'm a bit speechless. I'm so sorry your sweet Tripp is in such pain every moment of every day. I'm so sorry you have to watch it and make such hard decisions on his behalf. I pray daily for a miracle for Tripp and grace and mercy and wisdom for you.

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  84. God Bless you both with courage, strength, patience... Prayers and love to you both! What an amazing inspirational story!

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  85. Tripp is so very lucky to have you. This post alone shows how much you love him and would do anything for him.

    Please know I'll be praying for you and your son.

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  86. Sending love from Duluth, Minnesota. Everyday when something slightly unfortunate comes my way, I think of you and Tripp, and how insignificant my little bump in the road is in comparison. Thinking of you always.

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  87. Courtney, your words couldn't be more true. I felt the same when Lauren was alive. I am still a little cold and emotionless in some instances. EB causes our lives, thoughts, feelings to be a bit "off," a new normal as they say. BUT Strong women we are! A great support system we have! A mom on a mission forever!! I am here for you always. Much love to Tripp today and everyday.

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  88. Sending love to you and Tripp, from Los Angeles.

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  89. Wow. Your story is incredible. Sending you and sweet Tripp lots of love from Hong Kong.

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  90. You are a rock, an amazing example of a devoted mothers love. I have a child less than a year old and I thought it was a learning curve raising my healthy child, but you have reinforced how much I am blessed. Your son is beautiful. He has love like all children should have and not all get. He has you, and though I do not know you, you are one of the best human beings I have ever come across. I wish you love and comfort, especially in your times of need and suffering. And know that your desire to spread the word and awareness is working, I am reading this from New Zealand. You have educated me about this cruel EB and I will continue to learn and hopefully educate others and help also. I just wish there was something I could do to ease Tripp's pain xxx

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  91. I stumbled upon your blog a couple days ago and since then you and Tripp have been on my mind ever since. I'm a mother of a 3 yr old son and it pains me that you both and your family have to live this nightmare of a disease everyday. This last post of yours had the tears streaming down my face, you are an amazing mom and Tripp is ever so lucky to have you in his life. If there's anything I can do, even though I don't know you at all and I'm way over in Canada, please let me know. Thinking of you....Jaime & Ryder

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  92. Courtney,
    You are such an amazing woman and mother. You are my hero and I will fight with you. Sending love and prayers to you and Tripp. We've never met you. My daughter, Caroline, is almost 17 months and every night we pray for Ms. Courtney and baby Tripp. Thank you for sharing your struggles and triumphs. You are never far from our thoughts and prayers. ~D'Ann

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  93. Dear Tripp,

    What a fortunate little fella you are to have a mummy that loves you so much. Peace and healing thoughts to you my little friend!

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  94. If I could I would give you the biggest, squishiest hug EVER. Your strength, determination, and unconditional love for your beautiful son Tripp is amazing Courtney.... I can't imagine how hard this journey is, but I wish for you all the strength, courage, support, love and light you could ever need. ((Love Bomb))

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  95. "Hugs can do great amounts of good, especially for children."
    ~Princess Diana

    Dear Courtney,

    Your strength is admirable. So is Tripp's; it's nice to hear that he smiles despite the fact that he clearly has pain. A mother's love sets the tone for how you interact with people in life, in my opinion, and Tripp is lucky that you set the tone for him to thrive, not just survive. Sending good vibes your way! Take care.

    Peace & love,
    Rissa

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  96. Oh, Courtney. That just broke my heart. I am truly sorry for the things that you AND Tripp are missing out on in life. Please know that I continue to pray for you and the sweet little man daily. He is never far from my mind. God bless you and keep you in His arms as you continue to fight for your son.

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  97. You both are amazing!!! Your faith and strength is astounding! Sending out tons of positive thoughts for both of you and all that are effected by EB.

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  98. Your words are so powerful and so agonizing. There is no way to comprehend what the two of you suffer. And there is no way to explain it.
    I pray for you and Tripp. He is a living saint and you are his loving protector.

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  99. My heart is breaking, tears are falling down...How I really wish I could give you and Tripp my warmest hug.
    You and Tripp are in my thoughts and prayers. I am supporting you all the way in spreading awareness about EB. May God continue to guide and bless you.

    I really, really love that photo of you two...full of love <3

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  100. My heart goes out to you Courtney. My heart aches when my children cry from smaller hurts than your sweet Tripp endures. You are Tripp's earth angel.

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  101. Courtney,
    Know that I am praying for you, Tripp, and your entire family. You are such an amazing woman! Tripp is so lucky to have a mommy like you!!

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  102. Made me cry!!! :'( Hugs and prayers going out to you from another EB hater in Wisconsin!!!

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  103. Me heart breaks for the both of you. But it also feels so full knowing that your son is lucky enough to have a mother who Loves him still and doesn't resent the difficulties more than she loves him.

    Reading this put me in tears. I may be having difficulties in my life that lead me to want to laugh at some of my friend's complaints mine still pale in comparison to yours. It's humbling and makes me grateful for what I have.

    I had never heard of EB before I came to your blog today. But now I want to find out more and see what I can do to help. Even if it's just being there and offering help to someone with a child with EB.

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  104. With prayers for your previous family.

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  105. Thinking of you both. My heart breaks for you and your little boy. No one should ever have to deal with that sort of pain. Praying for you and sweet Tripp.

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  106. It's clear that god has given you patience, strength, love...and most importantly a voice. Thank you for using it to remind others that pain is relative, love is blind and hope is eternal.

    You have a beautiful beautiful boy. Made better by the life you have given him.

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  107. Courtney, I think of and pray for you and Tripp daily. You are a truly inspirational woman and I strive to be just a fraction of the mother you are. God bless you and sweet Tripp, I will continue to pray for your miracle.

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  108. Courtney, your post has been in the back of my mind all day. Your words are so moving, and so real. I noticed on another blog that someone mentioned your story as an amazing story of strength and love. A person commented, agreeing with the post but saying that people like Tripp are part of the reason why they are an atheist. They just can't believe in a God who would allow such suffering. I've been mulling it over all day in my mind, (I am a believer) trying to rationalize everything. It wasn't until I was reading a book called "Christmas is not YOUR birthday" that I found a quote that made it make sense to me. I just wanted to share, "So when Christmas comes around during an imperfect season of life, and you just don't feel like celebrating, remember: it's not your birthday; it's Jesus' birthday, and by celebrating Christmas, we are celebrating someone else who suffered too. Life is not about staying safe and living comfortably. The call to follow Jesus is a call to give your life to him, to join God's mission in healing the souls of the world. We were never promised a reward in this life. The real rewards are found in the joy and peace that we experience through serving others in Christ's spirit. "

    It's a fabulous book so far. I see the parallel between you and Mary so clearly. You both have been given a son whose lives are filled with suffering. And while we know the end of the story for Mary, she didn't. She didn't know what would happen or how anything would turn out. She just did her best to be the mom, and the woman that God wanted her to be. Which is the same that you are doing!

    I can't begin to understand why God is allowing your son to suffer SO much. But God let His own son suffer and die on the cross for a plan that was much greater than anyone at the time could see. When you serve God to your fullest, suffering and persecution closely follow. You and Tripp must be doing something AMAZINGLY right for all that you are being asked to endure.

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  109. I think of you and Tripp so many times each day. I tell people about him and about the nasty EB. I tell them what a wonderful momma you are and how you lift him to God. I pray for you both every day.
    I too look forward to a message from you on your blog. It helps me to be more specific in my prayers. God bless you both Courtney.
    ((((((hugs))))))
    And that picture of the two of you is absolutely inspiring!!!

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  110. Oh Courtney, I SO wish I could take this away from Tripp. This breaks my heart. Please know that we love you and are constantly in prayer for Tripp and for you.

    Love from TX,
    Laura

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  111. As my own little boy lays in a hospital, I find myself in tears. In his 18 months of life, my son has only lived outside the hospital for 3 months. BUT, when he was home for 3 months...we let him LIVE. I'm sorry, mama. I'm sorry for your sadness, I'm sorry more people don't know this exists, I'm sorry your precious boy knows nothing more. I hope you realize how your story has touched lives...God bless you, sweet Tripp <3

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  112. There are many people who are holding your family close in their thoughts and hearts. I hope all the love keeps you going. Big virtual hugs.

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  113. Courtney and Tripp,

    We love you and are inspired, daily, by your and Tripp's strength and determination and the fact that you both DO still have the ability to smile.

    EB takes so much of ourselves away and you have managed to still provide your son with a childhood. Maybe not the one he deserves and you and everyone else want for him, but I watched some of the videos (playing the xylaphone, etc...) and I see him smiling and quietly laughing and that makes my heart sing. To see him so happy with his drums and instruments...and by the way, that boy has rhythm!!

    You are an awesome mom and you're giving him the best life you can and even though he hurts he can still smile! The joy of love exists in his heart and that is the most important thing. That while EB strips away so much, it HAS NOT stripped away his ability to love and be loved.

    You both have touched and inspired SO MANY with your love and dedication and all of those people have become better people for having known you both.

    My words are inadequate for the situation you are both in, but I send you Love to warm your hearts when you are heartbroken, Light to guide your path when you are angry and Peace to fill your mind when you need to scream.

    We all love you and your precious son and we thank you for welcoming us into your lives.

    Love and Light,

    Lyric (Jennifer)

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  114. I too have never commented before but follow your blog as I have common friends/family with you.
    I Continue to PRAY and hope God gives you the strength to keep going for your only baby boy... you are his source of comfort. I am very sorry that EB even exists, it is just HORRIBLE that anyone would have to live with it.
    I pray God truly blesses you and Tripp.

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  115. Hi Courtney, my Nicky has RDEB and is almost 15 years old. Sometimes I have to sit and think to truly beliece I've been changing bandages for a third of my life. I hate EB with a passion and I wanted to take a moment to tell you I am in awe at your strenght, but most of all, your ability to perfectly express the feelings we all share about this horrible disorder. God Bless! <3

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  116. Hi Courtney, my son Nicky, who has RDEB will be 15 later this month. 15 years of surgeries, fights with insurance companies, tears and love, but most of all bandages. It's incomprehensible to me that I've been changing bandages now for nearly one third of my life. Incomprehensible to me that my son has never gone through one single day without pain and suffering. I wanted to take a moment to let you know how special you are and what a gift you have to express your love and your grief. Oh dear, how we all hate EB. Sending Hugs and Love... Silvia

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  117. What a beautiful and heartbreaking post Courtney. What a brave and wonderful mother you are. Thank you for posting all those photos. It was great to watch Tripp's journey in the photos and I loved seeing all the wisdom he has in those eyes! Just beautiful. It's as if he knows the secret we all want to know - how to live our best life by simply living in and enjoying the moment no matter how painful or hard that moment may be.
    I wish your family all the best for the future and many prayers and blessings. What an inspiration you all are!
    Take care, much love
    Angela

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  118. Still here praying for you and your son. I am crying once again and full of admiration for you.

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  119. You are the BOMB at pretending like you don't hate EB and bringing a huge smile to your son's face. I was in bed the other night, praying that Tripp and you were able to sleep and that the itching was not keeping him away, and then I smiled. I thought of your voice on the videos, how closely connected you are with him, how readily you can make him smile, sing along to a song he's drumming, narrate his play themes, it's beautiful, the bond you two share. And that is yes, because you are the BOMB, in spite of EB. You are an amazing mother because you pull it all off with a smile and grace, and that leaves me stunned and awed. Lots of love to you and Tripp.

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  120. So sorry for Tripp's pain and for your pain as his mom. What a truly wonderful mother and person you are and thank you for taking the time to express your feelings so eloquently so that we may learn about the devastation of EB and be humbled and inspired by your life as Tripp's mother. God Bless you both. I will continue to learn more about it and spread the word in the hope of better treatment and a cure. Stella xx

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  121. Still and will always be here for you little Tripp and Courtney.....
    Prayers and thoughts are sent your way

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  122. I'm not really sure what to say, other than that your faith & determination are inspiring, and Tripp is so blessed to have you as his mother.

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  123. You are amazing you are such a great Mom Tripp may not be able to see you but I can bet he feels your love and all the love around him.

    P.S. "EB" your going down!

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  124. Courtney, you are amazing. I don't know how you do it. My heart hurts so badly for you and for Tripp. There is no pain imaginable worse than the pain of watching your child hurt. You are in my prayers. And thank you for reminding me not to complain about the petty things.

    Love Jessica

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  125. I really don't know what to say except for you and your family and TRIPP are always in my prayers. You are a beautiful Mommy and Tripp is a beautiful little boy.

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  126. Praying for you and little Tripp. On this side of heaven you may never understand why things like this happen but I believe there is a purpose.

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  127. I don't know you, or sweet Tripp, but I saw your blog on facebook from a friend of a friend, I suppose. And I cannot wait until all sad things are made untrue in heaven. I know that I will be waiting in line to roll and tumble and cuddle Tripp with his renewed body. Until that day, may God continue to give you grace and strength to care for His blessed creation in Tripp, and may He give Tripp comfort and peace, and may he feel Christ's love through his mommy's care. Lots of Love,
    Brit

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  128. I've been following for a while but have never commented until now. Tripp's story breaks my heart. His courage and strength are astounding. No person - let alone a child - should ever have to go through this. He is so incredibly blessed to have a mother like you. You all are in my prayers.

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  129. you're one strong mama! you and your family are in my thoughts!

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  130. Courtney,

    Do you watch Oprah's new show Lifeclass? I'm not sure if you've heard about it or have time to watch -- but I felt compelled to share something she said with you. I thought it was so powerful.

    "There is no greater calling on Earth than to be the life guide, the teacher, the nurturer, the supporter, the caregiver, the honorer of a young life. There is no great calling. So if you're made the choice to be a parent in your life, that in itself is a great and high, high, high calling because everything else in life -- social worker, caregiver, doctor, pharmacist, teacher -- comes under the order of MOTHER."

    And when I read your stories and thoughts each week, Courtney, I can't help but think every.single.time. -- this is her calling. Her GREAT calling. This is what God has called you and Tripp to do. You are here to be some of our greatest teachers -- to teach us about EB, about what's really important vs. what really isn't...to teach us that God has a plan for us all.

    I know it's a difficult road you've been on and the journey is tiresome, but I know in my heart of hearts that you are exactly where you should be. I know that you are making a difference. And we, your loyal blogger friends? We're here for you. And we appreciate the time you take out of your day to write to us. I always look forward to your posts and hearing how Tripp is doing; how you are doing.

    I feel so blessed to have come across your blog and to be following along and supporting you on your journey. I'm doing my part and spreading the word about EB. And my hope, just like yours, is to have EB not take any more lives. For EB to be extinct like it should be.

    You're in my heart, in my daily thoughts, and in my prayers. Sending you our love from Southern California.

    XO,
    Katie & Family

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  131. Courtney, because of you and your son...I try very hard to be a more positive person: to smile when I get soaked in a thunderstorm because I'm outside in the rain, to laugh when my child drooled into my mouth because I'm able to pick her up and hold her, to stop complaining about those minute bumps in the road, and to spend far more time saying thank you than complaining. You and sweet boy has taught me to try to see the good in every situation. I pray for you both every day.

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  132. You are quite possibly one of the most amazing moms I've ever read about. EVER. Your daily strength and commitment to your son leaves me in awe each time I check your blog. What a sweet day in heaven it will be when you can hold your sweet, EB-FREE boy in your arms and love love love him to pieces!!! This was an incredible post. Please know that you've inspired a family in Utah to complain less about the "little stuff" and love and cherish each other more. My husband and I cried the day we found and read about your sweet boy a few months back. Thanks for inspiring so many with your life and courage. God Bless You!!!

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  133. I am holding my 4 year old daughter in my lap as I read your post, squeezing her little tighter with every word I read. I pray that Tripp may find relief, weather it be here on earth or anew in heaven. May God bless you and your sweet baby boy.

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  134. Tripp is the most inspirational little man. I am angry on a dailly basis about the injustice of your sweet baby's pain. You are both so strong, brave, and gracious. I am thankful that you have God to guide you through this path. I know Tripp hasn't lived the typical life of a 2 year old boy...but he has touched the lives of thousands of people. We all go to bed praying for you and Tripp. God bless you and your darling boy.

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  135. My heart aches for you and your sweet little boy. I cannot even imagine how heartbreaking and infuriating it must be for you to see your baby in constant pain. Your and Tripp's story has changed my life. I now take pleasure in the simple things and cherish all the moments with my children. When I see Tripp finding happiness in playing his drum it brings a smile to my face but also brings a bit of sadness seeing how much EB has taken from your beautiful, talented little boy. I daily pray for peace in your heart and for as little pain as possible for Tripp. I know that there will most likely not be a pain-free time for him in this life but I pray that things will get better for him. You and your son will always be in my thoughts and prayers. Don't lose hope and know that there are so many people praying for you both and you are touching so many lives with your story.

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  136. Hey Courtney! Tripp's story was passed on to me by my cousin living over in Hammond. My family still lives I'm Louisiana, but I'm living in Michigan now.

    I'm sure you don't have the time to read the thousands of posts you receive, but I'm a firm believe in God's plan. So, if its meant for you to read this it'll find its way to you.

    For more than 20 years I've been a marketing and media executive. I'd like to do anything I can to help you as you spread Tripp's story. It's not much, just my small gift to you and Tripp.
    If you get this and would like my help feel free to message me on FB. Holly Banks, Michigan. God bless you and Tripp. You're all in my prayers!

    Holly

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  137. That is a beautiful but oh so heartbreaking picture. My thoughts and prayers with you and your amazing little boy always!

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  138. I think of Tripp everytime my daughter is giving me a "ruff" time. I have nothing to complain about and feel a bit a chamed if I do. I wish there was a cure against this beest called EB, no baby, child or anything living should be suffering like little Tripp does. My thoughts are with you always and I hope Tripp gets to feel better soon so he can drum with his song(which I just love)

    You are a super mom by the way <3

    Hugs from Belgium/ Malin and baby Haley

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  139. Your words hit my heart like a ton of bricks. Breathtaking picture. Prayers to you and your family. Always thinking of you and your little guy who is fighting with everything he has.

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  140. I promise you that your son knows your face, just like he knows your voice, smell and touch. YOU are his world.

    Much Love...
    Shellie

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  141. Oh Courtney, my heart just aches for you and for Tripp. I wish there was something that someone could do to take away this pain. Tripp is one of the most amazing people I've ever heard of in my entire life. His light shines unbelievably bright. Thank you for sharing his life with all of us. Praying God's blessings for him and you.

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  142. I don't have the pleasure of knowing you personally, but you are the strongest, bravest, and most amazing mother I know. Tripp is blessed to have such a wonderful mommy. Keep the faith, keep fighting, and keep strong for him. That little boy has touched my life and the lives of so many others. Praying for sweet Tripp and for an end to EB!

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  143. Courtney, I have no words because you have said them all. I can not even say I can't imagine what you must be going through because nobody knows unless they are walking by your side and then they don't know because he is your own baby, only you carried him and have that connection with him. I have to say there is no way that any baby or mom should ever go through what you and Tripp are going through. I am truley so sorry for the both of you.

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  144. May the Lord have mercy on your child and you. I would like to say that I could not imagine, but I have from the start and your poem makes it quite clear what a horrible horrible disease Tripp has and the suffering you both have gone through. I am also so sorry and am just praying for you.

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  145. Wow. What a touching post. I am spreading the word about EB to all my friends that are nurses (most work with newborns). Also, I think that photo is the most beautiful photo that I have ever seen. It brought tears to my eyes.

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  146. We have never met, although I think of you and Tripp constantly. You are the STRONGEST mother, I know as a mom these are things we do, we do whatever we have to for our child(ren) just know that I am praying for you and your precious boy and think of you so often and you are such an absolutely PHENOMENAL mother, seriously....

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  147. Hi Courtney... I was referred to your blog by a supportive stranger. Though different circumstances, we share the bond of being "dragon moms". Naively, I had never heard of EB before, and am sorry I have been taught at the expense of your son. That said, though a stranger, I feel a great love for your little Tripp... I can get the sense of an amazing giant spirit in that little body. And I can only relate to the various emotions you feel in these circumstances. As we are in Utah, i wish there was more we could do for you. But know we will share his story and build up the support of "Team Tripp". You are in our prayers.
    Big hugs to you and your sweet boy,
    Tiffany Huish

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  148. So many people tell me they read your blog after seeing the link I have posted. and my heart is warmed. because each visitor to your page gets to see the most beautiful example of love and faith. You are precious. tripp is precious.

    that picture of you and tripp is BEAUTIFUL.

    wow. YOU.LOVE.BIG. and i love watching it.

    you guys are always in my prayers.
    Abby

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  149. Hi! I'm reading from Sweden,my cousins little girl had EB and she just died, 6 months and 12 days old...

    My heart is aching and I hope that you'll find strenght from all those people that cares and pray for you.

    All of you that've kids with EB and of course the KIDS (or if you self have it) are such strong loving people!

    Love Mari

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  150. Dear Courtney ~ The description 'Warrior Mother' was created for rare women such as you. Your strength and devotion to your son Tripp is exceptional. I pray for your continued ability to love and care for your beloved son.
    Dear Tripp ~ you are a precious boy who is loved and supported all over the world. I pray daily for respite from the suffering you endure.
    With love from and English Grandma xx

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  151. If I had to tell you how I found your blog…I couldn’t. I have been reading about your sweet little drummer boy for a long time and I have never reached out to you to tell you how your story has blessed my life. I don’t have any struggle that is even remotely close to yours. I have 3 kids. My first born is a Tripp as well. I deal with all the normal crazy stuff that comes from 3 kids and I take it for granite. I have had raging panic disorder for the last 3 years and when I read your blog I wonder why! I think of you and your family every time I start to feel anxious. I have nothing to be anxious about! Anyway, I really just wanted to say that your Tripp is never far from my mind or my prayers. Thank you for allowing the world to know your story. You are a reflection of God's love!

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  152. All my love and my prayers go all the way across the wide Atlantic Ocean to Tripp and you. You are role models, each in its own way. You, because you always, at all hours, are at your son's side and give him love, security, closeness and care. And Tripp, because he shows us people how much pain it can be in life so we all feel a greater appreciation of the life we ​​live and do not complain so much. I promise you Courtney - though I do not know you - if I could I would take over his illness and give him the childhood he so desperately deserves. If I could I would have done it at this very moment ... I am sincerely sorry that I can not! Lots of love from Asa and the rest of the Seger family in Sweden

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  153. That is the most beautiful picture of both of you. I have been reading your blog for a few months, and I want you to know what an inspiration you and Tripp are to me! If I can just be half the mom you are. I will be praying for you both. Thank you for sharing your sweet baby Tripp's story!

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  154. Courtney, you have every right to blow up about this horrible disease. I could never imagine what you go through on a daily basis. Every time I complain about my child's bad mood or her painful diaper rashes, I also remember that if she had EB it would be never ending and life could be miserable. But that aside, How is Tripp doing? These posts scare me because I dont want you to loose hope and I dont want Tripp to suffer more than he already is. I pray every night for him to have a good night.

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  155. You have an amazing way with words. We will all help spread the word.

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  156. It hurts. All of this. But it's beautiful how much you love him and how much he loves you.

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  157. This breaks my heart. You are a very strong and awesome mommy! Tripp is very lucky to have such a loving person as his mama! I will continue to pray for your son and you.

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  158. I really do think your blog is everywhere. I have friends who live in La. close to you and others who live here in TN. Every time I turn around someone is posting about your blog on FB and how they have read about EB thru Tripp's story. Your doing a great job getting the word out. We continue to keep Tripp and your family in our prayers.

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  159. It sucks. It's so unfair. My heart is breaking for both you and Tripp. I include you both in my morning prayers. No one should ever suffer so much, especially a sweet, innocent little one. No mom should have to watch her child suffer. We need a cure of this cruel disease.

    You're ever in my thoughts.

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  160. You will beat EB! The love you feel for your son is felt all around the world and love is POWERFUL! It only takes ONE person and you are that person! Don't give up! You have the entire world behind you and Tripp! Your son is inspirational! And as a mom.......you are ONE IN A MILLION! God bless! Xoxo

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  161. Wonderfully written, Courtney. Your words show just how heartbreaking EB is. Your photo is beautiful - and shows so clearly the love you and Tripp have for each other. You and Tripp will stay in my thoughts and prayers.

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  162. Thinking of you every single day and praying your moments with Tripp are filled with the least amount of pain and suffering...for both your precious boy and you. My heart just aches for you.

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  163. I've been praying for you Courtney, and Tripp. My heart is breaking into pieces for you and Tripp, I don't even know what to say. I'm so sorry!
    I can't stop thinking of some things Tripp and you can do, or already have done for that matter. Inspire people, remind us not to take what might seem like simple things for granted, you've shown such faith, strength and devotion, and have touched lives! Tripp has undoubtedly touched more lives in his 2+ years, than I have in my 29+ years. I will continue to pray for you and Tripp. God bless.

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  164. Hi Courtney and Tripp-

    It was 11:11 on 11/11/11 and I wished for you both, for a cure for EB, and for Tripp to be able to tell his Mommy what we all know, and what he knows better than any of us, that she is an amazing and wonderful person. The strength you both show is inspiring, and we in the EB community love you both so much for it.

    Sara (and Wendy) in Bath, NY

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  165. Tripp is such an incredible little man. His life is touching others in such a great way. I posted this over on Patrice's blog to, but Tiny Prints http://www.tinyprints.com/celebrity-holiday-cards/ has a line of holiday cards this year that benefits the Epidermolysis Bullosa Medical Research Foundation. It made me think of both Tripp and Jonah so I ordered from this line this year. Not sure if you want to throw it out there to your blog followers or not, but I figured I would share it. Wishing you and Tripp much love and peace even in the midst of such awful pain. He is a little miracle.

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  166. I am so sorry for your pain and you son's pain. I am just learning about EB through blogs. You make one more person right now aware! I have shared your blog to let others aware. It does suck and it does suck seeing a child in pain especially when it's your own. Although I don't know about EB but I lost my nephew to a rare blood disease when he was 4 and he was born with never being able to eat, was blind, couldn't walk or talk, living with seizures and a feeding tube and a shunt. I know the heartache to see a child suffer and I am so sorry you are suffering and that your child has to suffer. You are in my thoughts and prayers and praying for peace for your family even though it won't ever seem it gets easier.

    God Bless,
    Annamaria

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  167. I don't even know what to say nothing I say can help or even make u feel happier I feel ...I never in my life heard of eb .... I have three kids n I couldn't even the pain j would have to see anyone of them to suffer in this pain you lil angel is suffering .... I can say this your son is a fighter n you can see in this picture he loves you very much you n your child will never leave my heart it dreams

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  168. Wow! That was incredibly powerful and gives such insight into the challenges you both are facing. My daughter developed bacterial meningitis at 6 months and is severely disabled now. I have never been able to put into words the frustrations and disappointments that I feel the way that you did. I wish I could offer words to help but I hope you know how many lives you and your family are touching.

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  169. Courtney, You are on my heart so heavy for the last few days. I wanted you to know that I am praying for you and Tripp and your family.

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  170. wow this is a very strong post. def keeping you, your family, and other families that suffer through this in my thoughts and prayers!!

    http://infinitelifefitness.com
    http://mscomposure.blogspot.com

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  171. Thinking about Tripp and praying for you all.

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  172. I am not eloquent with words, but they are from the heart. I am not tearing up as much as I am actually crying my eyes out. I have had the blessing of becoming a mother 11 months ago. I never knew I could love like this. I would do anything for my son. I know you feel the same way, I know you would do ANYTHING to take his pain away. I can't imagine the feeling of helplessness you must feel watching your son suffer. I feel like a horrible, selfish person for getting upset when my son cries because I needed to walk away to use the bathroom or get a drink of water. You are an amazing woman put on this Earth to be that little boy's mother. Only you could love him and commit to him the way you have. It makes my heart literally ache to imagine the pain you must feel. Tripp may not ever know the things of a "normal" childhood, but he knows something most children would never know...the level of commitment and devotion and endless love you give to him. You are an inspiration and make me strive to be an even better mother and practice patience and be grateful for every second I have with my son. I think about you both everyday and can only hope that you both find peace in whatever may come your way and in whatever decisions you have to make.

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  173. I just wanted you to know that right now I am crying for you and Tripp, and praying for you, too.

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  174. You are the most amazing women on the face of this earth. What you are doing for your child is a miracle in itself. You are by his side and even if it feels like it's not enough know that he trusts you and he knows you are there. You, your mother and that precious little boy of yours are Angels in my eyes. The Universe needs to grant you your wish. It works in strange ways but I have faith that it will send you and your family the gift that you deserve. Please stay strong and please know you are a wonder in this world. Lots of love goes your way. Your son has a special place in my heart. I may not know you and your family but I do know your on the right path and what your giving your child no one else can. I wanted to give you something and it didn't take long to come to my mind this poem that I stumbled upon many years ago:

    ROSEBUD

    It is only a tiny rosebud -
    A flower of God's design,
    But I cannot unfold the petals
    With these clumsy hands of mine.
    The secret of unfolding flowers
    The flower God opens so sweetly
    In my hands would fade and die.
    If I cannot unfold a rosebud,
    this flower of God's design
    Then how can I think I have the wisdom
    to unfold this life of mine?
    So I'll trust in Him for his leading
    Each moment of every day,
    And I'll trust Him for His guidance
    Each step of the pilgrim way.
    For the pathway that lies before
    My heavenly Father knows.
    I'll trust Him to unfold the moments
    Just as He unfolds the rose

    Author: Unknown
    @}--`---

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  175. waoooo, im from central america (Panama) i'm also a mother i cant say i feel you pain, but i will say i will join you in your pain. its hard for any mother to see theur son or daughter hurt so much and not being able to do something, i must say you are a very strong woman and like someone said before at least your son knws love. Motherly Love. as i write and imagine what your going through and the pain your lil boy goes through bring tears to my eye, but best believe that God has a solution for everything. i will keep you and your son in my prayers and hopefully someone find a cure for EB.
    xoxo ....zeze

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  176. You are a very courageous person and mom for being so honest about your struggles. I feel terrible that you have to go through this. But you really show how much you love your son.

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  177. Because of you and Tripp I appreciate my healthy children so much more. Because of both of you I will complain less in life and appreciate the goondess I have. Tripp is beautiful and his suffering wakes my desire to do good.

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  178. heartbreaking. i'm praying for you both. you're life is more than i can comprehend. just keep loving your precious baby...

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  179. You and your baby are angels...you can't imagine how your story has touched me. You are my hero. I send you prayers and love all the way from Spain. You deserve the best.

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  180. I found your blog tonight after seeing your button on a friend's page. It is heartbreaking, but so inspiring. What a little Angel you have! He is so blessed to have such an amazing mom. You two will now be in my daily prayers. I needed to hear this story today. I was born with Cerebal Palsy. Luckily it's not as bad as most cases. I have been blessed with an amazing husband and 2 healthy children. I don't usually, but I complained alot today because my muscles were aching. Taking care of a 3 year old and 5 month old drain me some days... but after reading about Tripp... How dare I? Bless you. And Merry Christmas to you both!

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  181. Oh my gosh, I had never heard of this before. My daughter has a congenital heart condition and has had several surgeries and a feeding tube, but I can't IMAGINE the pain your son has gone through. God bless you on your journey and your dedication to getting through it. Please do let us know how "we" (the public) can help...I will spread the word on my blog.

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  182. Courtney,

    Your words are strong and cut throating.. Which is the way you should feel. I couldn't imagine going thru the things you and your family have to go thru. Your family has been on my mind all day since your blog was brought to my attention. Anything I can do to help you spread the word about this horrible disease please let me know. HE has placed us all here for a reason.. And it's no coincidence that your family has been placed before my eyes. Praying that you all are granted PEACE!!

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  183. I can not fantham what it is like to loose a child to such a painful thing. I am soo very sorry for your loss and I pray that you will have the streingth to hold your head up high and give all the glory to God that he is in a better place now. Sweet Courtney, Your story has touched my heart and has hurt my soul and deep down makes me want to cry for his loss. So just to let you know I know my sister was killed when I was 11 years old and she was 13 so we have two angels watching over us. I would love to keep in touch with you if you would like so that I can share my story with you. Dianna
    Please email me at butterfly100298@yahoo.com thank you and may he rest in peace God Bless

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  184. Courtney,
    (((hugs))) from Texas. I am so so sorry that this horrible disease has taken your sweet baby boy. I can't even imagine your pain. If there is anything that I can do here in Texas to help you in your fight to raise awareness, you just say the word. My personal email is : kerrililes@gmail.com
    Kerri

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  185. Courtney, I have only found your blog now that your sweet beautiful little boy has passed and I've read it through, speechless at the strength you and Tripp have shown in the face of unimaginable suffering. My children asked about Tripps' skin and when I explained, they said 'Poor baby, that's not fair... wow, he has a great smile' Both comments 100% true. Out of all your posts this one struck me the most. Please find some small comfort in the fact that from all the way in Australia we are thinking of you with love. Much love infact, may you find peace in your faith... for the first time I understand how much comfort it must bring.
    Bridg

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  186. So, so sorry for your great loss. I will be praying that God will give you strength and guidance as you go through this terrible time.

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  187. This is the sweetest picture, EVER. I could not even imagine going through all of this. My daughter was born a few days after Tripp and I commend you on being such a fantastic mother & fighting through all of this with him. He was a precious little boy and God gave him to you, because he knew you could handle it. Reading this blog this morning has touched my heart, truly! I am so sorry Tripp lost his battle, but I am happy that he is no longer suffering from this horrendous disease. There needs to be more mothers like you out there! You are an amazing woman!

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  188. i have never even heard of EB, and to know that there is such a horrible disease that attacks precious children like your Tripp is so heartbreaking. As i read this tears fell from my eyes to just think that I have complained about stupid little things that are nothing like a little back ache or head ache and so on but to know there are children who are suffering WAY worse than i could imagine! i pray there will be a cure for this!! I will keep you and tripp in my prayers, for healing to his body and strength to yours!

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  189. oh your sweet baby, i am in love with him :) God bless you and your family.

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  190. i have no words that would mean anything to you or your son. i am a mere stranger, but as my tears fall & i sob uncontrollably as i read this (as if it were one of my own), my heart is breaking for you both. your strength & love is raw emotion...only the emotion a mother could contain. bless you both.
    jaime

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  191. I can't imagine going through what you have gone through. You are stronger than anything I can I think of. God made Tripp your son for a reason-He knew that you would do everything in your power to give Tripp the best life possible for him. One day there will be a cure for this horrible disease and parents will be unknowingly thanking you for saving their child. I will pray for you, your family and future families who have children with this skin disease. God and love are stronger than any illness. I have never heard of EB before but I will be spreading the word. And I promise to you that during the last week of October I will dedicate my time to educating people about it. Please e-mail me at cfarnsworth2@cub.uca.edu with any information that can help me better educate myself and others. Your strength is an amazing inspiration.

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  192. My heart and my prayers go out to that precious little boy & his family<3

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  193. http://www.homeforhealth.net/ <-- please check this website out.

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  194. Courtney,

    I "happened" upon your blog today. This is no coincidence - There was a reason and I know it was so that I could tell you that I am one of MANY MANY people thinking and praying for you today, tomorrow, next year. And to tell you that I am sorry for your loss and I only wish I could be there to hug you, let you talk, cry, or just be angry and listen with an open heart. You are an amazing mother and Tripp knows that even now. Britt

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  195. What a beautiful little Angel. I am so sorry that he is going through this. But by looking at the pictures I can tell that he has a loveing family. May God bless him and your family to keep you strong through this trying time. He is a beautiful little boy.

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  196. Courtney,

    I am lifting you and Tripp up in my prayers. Stay strong. God Bless you and your family.

    Laura

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