Tuesday, September 13, 2011

I'd love to think of a title but it's late and I've got nothing...

I've been trying to type a post for the past few days now and every time I start, I just can't think of what to say.  

It's so easy for us to focus on the bad in the world.  But there are SO many good people in this world.  I am now experiencing this every single day.  There would be no possible way to even begin to thank every one of you who has reached out to us.   
I am in awe at the support that we are getting and at the amount of people who are following our journey.  I just can't get over the fact that my little boy who has never spoken a single word, has reached out and touched so many lives.  I don't think I will ever have the right words to be able to express my appreciation to all of the people who have been there for us- AND who are still here for us, still supporting us, and still sharing our story and helping me to spread awareness about EB every single day.   

So with all of this, the lingering question in my head has been, "What do you want from me, God?"  Because I know this is happening for a reason.  I know we have this tremendous amount of support and love from perfect strangers for a reason.  What's the message?  There are over 1300 followers of this blog.  Tripp and I have maxed out 5,000 friends on Facebook and I still receive friend requests every single day.  The "Prayers for Tripp" Facebook page that a friend created has over 26,000 people that "like" it.  Another amazing mom nominated ME on babble.com for the "Top 100 Moms that are changing the world" contest, and I am currently in first place.  I cannot believe it. 

ELMO (yes-THE ELMO- from Sesame Street)'s  personal assistant, Kim, emailed me today.  She said that "Elmo," (Kevin Clash) heard that Tripp loves him... and wanted to know Tripp's favorite things because he was going to write him a song.  
Elmo is going to write Tripp his own personal song??
This may not excite some of you, but to me, this is like bigger than Oprah!!  
This is ELMO- THE Elmo. 
That makes me love Elmo more than ever before.  
And it makes listening to him ALL. DAY. LONG. a whole lot better.  
That is just plain awesome and so absolutely THOUGHTFUL!  Wow. 
People continue to AMAZE me.


Never in a million years or in my wildest dreams could I have imagined any of this. 
 It is the most humbling experience that I will ever go through. 

What is God trying to tell me?  What does he want me to share with each and every one of you who are supporting us and loving us?  I know that Tripp has brought us together in prayer.  I know he has taught some people (like me) the meaning of life, love, family, etc.  I know that he has some of you hugging your babies tighter, praying at night, or maybe saying an extra little prayer of gratitude during the day instead of getting frustrated.  But are we be called for something bigger?  What are we here for?  What is our purpose?  

But I don't want any of you to take me the wrong way... like I'm just "walking the walk" and "talking the talk" over here.  I'm writing this mostly for MYSELF.  I know my life needs to change.  I know that even though I DO devote my life to my son everyday, that I do not devote my life to God in the way that I should.  I don't pray as much as I should.  I let irrelevant things get to me in a way that they can ruin my entire day.  I still judge people.  I still hold grudges.  I still get angry...
No one is perfect.  
I so often wonder what will come out of this?  What will come out of all of this support and all of these amazing people coming together in prayer?  What amazes me is that I hear from people of so many different religions, with so many different views and beliefs.  People from different states and sometimes different countries.  Yet, NEVER ONCE (minus one lady about a year ago) have I received a single negative comment from one single person.  That's just amazing to me.  And some of you might be thinking, "Geez, who would leave a nasty comment to someone with a sick baby?"  But this IS a personal blog- so I do write about my own opinions and my own beliefs... so I personally think that it IS amazing that I get nothing but a complete outpouring of POSITIVE support and so much encouragement.  
And to me, that is just touching on so many levels.  

I feel like a lot of you are my family.  Some of your faces I have never even seen, but have seen your name over and over in my blog comments, e-mails, or Facebook messages... that I honestly feel like I know you.  I feel like you're a part of Tripp... and a part of our journey.  And you are.  Where would I be without my support system? (And by support system, I mean all of you AND ESPECIALLY my angel of a mother who never gets enough credit for what she does for Tripp and me).  Grammy= "Mother/Grandmother of the century" in my book!  Without her and all of you, I'd probably be curled up in a corner somewhere feeling sorry for myself saying, "Oh God, why ME?" and "I can't do this another day!"  But it's not like that.  I admit that I feel tired, frustrated, and just plain angry sometimes... but I try my very hardest not to let that show.  I have so much support and so many people encouraging me each day.  I knew Tripp was special from day one.  Just being in his presence gives me a sense of peace that I could never explain.  And that has made all of the difference in the world. 

Tripp is stable.  He's not even close to his "normal" self from before he got sick.  But he is still able to sometimes feel well enough to stand and drum a little.  He's averaging about 1-3 times a day that he will stand up and play.  Each time usually lasting around 5-15 minutes.  His mouth is still horrible.  We did wound cultures last week and I got the results back today and SURPRISE- there's psuedomonas everywhere.  Could've guessed that one.  Sensitive to only one antibiotic... that I don't want to use unless we absolutely HAVE to.  We actually just got off of it about a week and a half ago.  This week we are going to test him again for the "herpes" virus (like a fever blister) and make sure it's not in his mouth.  
A few of you have mentioned in comments about the GCSF that Sam (who was the first child to undergo the BMT in Minnesota) is currently taking.  I have been speaking with Sam's mom, Marybeth, with Sam's doctor in Nashville, and with Dr. Defusco and we are looking into it.  I will let you guys know if we decide on anything further.  I don't want to go into any details yet, but I AM, of course, VERY interested.  And I will definitely keep you all posted.

I'm not sure if this post even made sense.  It seems like a lot of rambling thoughts.  But I'll leave with this... 

"For whoever is ashamed of me and of my words in this adulterous and sinful generation, of him will the Son of Man also be ashamed when he comes in the glory of his Father with the holy angels."
-Mark 8:38

Are we ashamed?  I would love to think that I'm not... but that's really not realistic.
I don't want to be ashamed.
So what do I do about it?
I want to share with you this post from my dear Patrice.  
I think she's having the same thoughts going through her head about what we ALL can do to make a difference.  Because if you REALLY stop and think about it... 
We only have ONE goal in this "temporary" life. 
And that is to get to Heaven.
And I don't know about you, but I really want to get there... 
Because I KNOW that's where my little man will be.
Probably holding Elmo, a duck or a cow in one hand... and holding Jesus' hand with the other. 



  1. Wow - amazing as usual. I wish I had more to add, or some great words of wisdom for you! I think God is doing a mighty work through Tripp and you, and that He will continue to give you strength in the days ahead. Praying for that sweet boy to be healed and for you to be able to have some rest. Also praying that GSCF will be an option - it's amazing how it's worked on Sam!

    Love from TX,

    PS - how cool is it that ELMO is going to write Tripp a song?!

  2. I am so happy Elmo is writing Tripp his own song! So exciting! He is such a cutie pie and deserves it more than anyone :)

  3. Dear Courtney, I check in with you daily, just another mom/granny who thinks about you and Tripp, and your family, and wonders where you find the strength to do all that you do for your son. But, I realize you DO those things BECAUSE you have that unbreakable strength. God chose you for Tripp because He knew you would move Heaven and Earth to care for your son and that no matter what obstacles were in the way, you would find an answer. As difficult as it is to put one foot forward everyday, your strength and words in your blogs have helped me deal with an extremely difficult family matter that had left me completely hopeless and in so much emotional pain that I too wanted to curl up in a corner. Reading your blogs gives me faith, hope and a feeling that someday this matter will be resolved. I only wish the other parties in this situation would read what you are going through and re-assess their lives and what they are doing to our familly. So, to answer your question in part about what will come of this: know that you are giving those who follow you hope and inspiration in life, because without hope, we lose our way in the darkness of pain. God Bless You and Tripp...

  4. OH man, dah dah duh dah, dah dah duh dah, TRIPP'S WORLD! Wow... Courtney. I know that when we were in MN, I never felt more "on purpose." As a dad, as an advocate, as witness. YOU are ON PURPOSE! This is it, right here, making the difference you are making by witnessing to the world the beauty of God's plan - especially when what we see through our tiny little human eyes looks less than ideal or perfect. You just keep reporting his beauty with such bold honesty; it is what the world is starving for... living on purpose, and being willing to believe. You demonstrate both so well that is serves as inspiration and motivation for others, myself included. I like so many look forward to your posts, and cringe when I check my blogger dashboard before posting on my blog and don't see an update! LOL, it's like I'm holding my breath over here! Okay, okay, enough guilt trip ;-). We love you guys! The Ringgolds

  5. Elmo *is* the man! that is so wonderful, I hope it brings a smile to Tripp's handsome face.

  6. The Elmo story is amazing!! Elmo is totally the toddler Oprah!

    I think of you and Tripp often. Sending love...


  7. Oh Courtney,

    thanks so much for this post... yes, I guess we are all here for a purpose...

    and I am so glad that I found your blog...

    there is really not a day without it, that I think about Tripp...

    and that I pray that he is doing better... or least that he feels painfree...

    Big thanks also to your mom who is so supportive...

    and to your family...


  8. Courtney... the title should be, "Witness my Tripp changing the World, one heart at a time... beginning with Mine"

    We are all inspired by you and Tripp... a big part of what I find so amazing is witnessing your personal journey. By your stream of consciousness posts like this, we get a view of Courtney- it fleshes you out. You are able tomake us RELATE to you.... see ourselves in you and give us tools to use in our own lives. What a beautiful gift you have. Your sweet Tripp is the reason and you are his instrument AND you are HIS instrument. I give thanks for you and Tripp coming into my heart, everyday. Xoxo Tracey

  9. How exciting, can't wait to hear Elmo's song for Tripp. And Tripp drumming away to it!

    Love and hugs to you all

  10. What a great post, thanks for posting a challenge in such a humble way. As always, your posts are wonderful to read and seeing pics of Tripp smiling always leaves a smile on my face, what a cutie pie!!

  11. WOW Courtney! I love reading your post. You are so honest and I think you sharing your heart and struggles is just what Jesus would want. He never expected that we would be perfect but more like him. AND YOU ARE.

  12. ((Hugs!))Love that Tripp is getting his own song!

  13. Courtney, you are a beautiful person, inside and out. Continued prayers for you, Tripp, and your sweet Mom.

  14. Elmo is the greatest and so is little Tripp! God does most certainly have a plan for you... you are living it. You are Tripp's mommy~ that was always meant to be. You are reminding thousands and thousands of mommys to be extra patient, to feel blessed they have healthy children, and to make sure they live in each and every moment with their own children. That is a gift to them, to all of us who are taking this journey with you!! Love to your Mom. Love to you. Love to your little man Tripp from Meme here in Ohio!

  15. Elmo writing Tripp his very own song is awesome! Be ready to listen to it a 100 times a day! :)
    I am so glad that you have a great support system and a wonderful Mama to be there for you. I can't imagine how much harder it would be if you didn't.
    You also need to realize that you are a supporter for all of us too! I learn something new everytime I read one of your posts. You have taught me valuable life lessons.
    I am here to root you and Tripp on! Hoping and praying for the best!
    Love you guys!

  16. Hi Courtney: Leah's Nana here checking to see how your precious son is doing. I am always inspired by you and Tripp. You guys are awesome and so blessed to have so many people in your corner. You have brought people together in prayer and how great is that?
    Elmo is the greatest. Can't wait until we can hear Tripp playing his drum to his OWN song. How wonderful is that? God Is So Good. Please take care guys. Love and Peace Leah's nana

  17. Elmo is writing Tripp his own song???? How exciting! You sure do have a beautiful little man:)

  18. As always Courtney, your post brought me to tears...happy tears for Tripp and Elmo, heartaching tears for your daily struggles and the unstoppable tears that fall every time I think on God's promise to all His children. We will never know our purpose and we will certainly never understand why children suffer so, but being with you and your family on this walk with God has been a true blessing.

    Wishes for His peace to you.

  19. Courtney,
    Elmo ROCKS for creating a song for little man Tripp...and he is doing this because you and Tripp are BOTH angels here on earth. You remind me everyday to not take the little things for granted. My son is only 10 days older than Tripp, and on days when I get frustrated or start to loose my patience, I stop and think "Courtney would give anything to talk to her little man and have him talk back" and then like a calm breeze, I am at peace with whatever my little Aidan is doing at the moment. Thank you for being so real about your feelings and your struggles. I pray for you everyday and especially when I sit with God on Sunday's at church, I ask him to give you my strength, ,to give you peace for a day with nothing but a day full of love, laughter, and little man Tripp beating out BINGO on the drums!!! Love and total respect to you and your entire family!

  20. I'm with you on the excitement bit! A song from Elmo, so cool! I'm sure Tripp will learn how to drum his song in no time.

    I voted for you in that contest, you're the strongest woman I "know." Tripp is lucky to have you for his Mother just as you are lucky to have him as your son. :)

  21. Im a new follower, and I have a birth defect called spina bifida. It's nowhere near as bad as what Tripp is going thru, but I have gone thru the ringer medically in my 27 years. I just wanted to say that from here on out, when I get upset about something, I will think of you and Tripp. I never thought a 2 year old would be my hero, but I can think of no one better. I wish Tripp, yourself, and your family my very best. Let the lil man know his extended family is thinkin of him.

  22. Courtney you are an amazing mommy. I do make sure that I read your blog every time you update but I never comment because...well I don't know what to say other than God has a plan. You have a sweet sweet little boy and he is a gift from God. My little girl who is two sits with me as I read the blog and looked at me(I had tears in my eyes) and looks at Tripps picture and kisses the computer screen and says all better...which made me cry...So to say the least we are sending our love and prayers from Tuscaloosa, Alabama. xxxx

  23. Thank you, Courtney, for being such an inspiration to me. I think God is indeed working through you in so many ways, you may not even realize it. I hope you find the courage and strength you ask for to be more as God wants us to be (I pray this for us all)!

    Elmo just gained a million more points from me! That is INCREDIBLE! I'm sure like thousands of others, I can't wait to hear the song! The picture of Tripp holding his Elmo brought me to tears (and your words, too).

    I just can't express all the things I'd like to say. You and your family are in my prayers every day. You are a role model mommy, indeed. Thank you.

  24. http://limpingontomysoapbox.wordpress.com/2011/09/13/the-smile-of-a-hero/
    Your story has really gotten to me so I posted a blog about you and the lil man.

  25. Courtney, I do not think there is any 'greater purpose' for you. You are using your life as a platform to share the gospel. While there are many that do this, people are always in awe when someone can do this under circumstances that most of us would display unbelief or anger at God. Perhaps your journey is like a modern day Job. I've always thought just like he didn't know there was a war going on up above over him, we are just as clueless of what is going on- aka 'God's plan'. You are a beautiful person, inside and out- thank you for your inspiration in my own life.

    I am one of those fervently praying that there may be something to this GCSF drug. I got so excited when reading about it. My three year old, Grace and I continue to pray for Tripp and you AND your family daily. I can't wait to tell her about Elmo writing Tripp his own song! That my friend is the COOLEST! :)
    We'd love to see some more drumming soon and just pray your sweet boy will be healed in Jesus' name. We love Tripp...:)

  26. Praying for you and Tripp right here in Mandeville, LA. May God bless you and use your family for HIS GLORY!

  27. Hi Courtney,

    I found your blog just this week. Someone had posted it on Kelle Hampton's Blog (www.kellehampton.com) and I couldn't resist taking a look. I'm so glad that I did!

    I want to write you a personal message, so I don't get into too many details about my own journey with my Chloe and how her having down syndrome has opened to my eyes to what's really important in this life, just as your Tripp has for you. But for now, I will say this -- YOU are an amazing person and mother, and I'm so glad I'm able to share in your family's journey.

    What a cutie Tripp is! I can't believe what an amazing drummer he is! GO TRIPP GO!! :) Those videos you posted made my day!

    And Elmo writing him a song? WOW-WEE!! I'm so excited for him! I hope you share it with all of us, as I'd love to hear it! :)

    From one special needs mom to another -- I send you lots of love and hugs. You, your mom, and Tripp are in my thoughts and prayers. :) Have a great week!

    XO ~ Katie in Southern California

  28. Praying for your baby boy, for you and your mom every single day. You are a very special person!

  29. Zach is thrilled!!!! Can't WAIT to hear Tripp's Elmo Song!!!!!!

  30. Courtney,
    I came across Tripp's story a few weeks ago, and not a day goes by where I do not think about and pray for your sweet son. You are amazing and the ultimate testimony of strength given by God. I have enjoyed reading your posts, and especially watching the videos of your drummer boy. God Bless

  31. Praying for your family here in Virginia Beach, VA. God knows your heart and your blog is a true testimony- your transparency is a great witness. I admire you for that. Keep your head up and your knees down. May God bless your beautiful family!

  32. This comment has been removed by the author.

  33. Wow Courtney, how touching! We all want our purpose to fit into this grand box, but I believe our purpose/your purpose is to do exacting what you are doing right now. Your efforts, strengths, courage, and enthusiasm are slowing etching away your ego and the egos of all those that you share your story with, especially me. You are reaching far more people that you can even fathom. Bless you and I pray for your continued strength!

  34. Like everyone else said, Courtney, sweetheart, you're already doing so much you have no idea! By being strong as you are and standing by your son and fighting for him, you teach all of us how much we should be grateful and how much better human beings can be if we all try to be like YOU! So don't ever wonder what else you could be doing, you're doing something so BIG that you will only be able to see when you reach HEAVEN and see how much light will be surrounding you... Tripp is a real blessing and you two are a blessing in the lives of all of us, for reminding us every day that life can be so much more than our little petty routines, that we can be much better...at least that's how I feel when I read your words...that I can be much better..that I can be like you ... :) ... keep up this wonderful job you're doing...raising awareness about EB and helping everybody reach out so others with this disease so we can all find a cure one day. This world definitely needs more people with YOUR light!

    Hugs to you and Tripp and I can't wait to hear Elmo's song to him!

    I think you should show Elmo the poem you made for Tripp... it's the most beautiful poem I have ever seen...


  35. Elmo IS a big deal! That is SO cool! I'm very excited and can't wait to hear the song (guessing you'll post it). :) I love how you let God use you. He is speaking through you more than you know. Making this mommy, who can get a little ungrateful for such a menial thing from time to time, put things into perspective. And I LOVE seeing Tripp's smile! I smile every time I see it. So beautiful!

  36. You deserve every bit of goodness the world has to offer! Whether the credit is through God, yourself, your sweet son, or all of the above, you deserve it! Enjoy Elmo and all the smiles to come from these fun experiences.

  37. Courtney, there is so much I'd like to say but I don't know where to begin. Tripp is a gift from God; I knew from the first time I read this blog how much you adore him and your love for him is what matters the most. I will definitely keep you both in my prayers!

    And about Elmo writing a song for Tripp? HOW COOL! I love Elmo - and I'm a grown up! He's awesome.

  38. Wow, Amazing way with words Courtney!! You are an amazing mommy, in some ways my inspiration and I don't even know you. God bless you, your mother, and Tripp!! By the way he is amazing and such a sweetie. Lots of prayers and love from the Luper family from Franklinton, La!! Wish I could meet y'all in person and really get to know you and your son(a miracle from God)
    I think it is so awesome that the ELMO is going to write him a song. Waiting to hear it.

  39. ELMO ROCKS!!!!!!!! How exciting this is!!! My husband and I got together with Menchies in Hammond and we'll be doing a fundraiser for you guys on October 22nd. Supposed to be an all day deal, and we'll be there around 3 or 4 to sign books. We are all standing behind you guys and love Tripp so very much.

  40. Too awesome about Elmo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    I am going to vote for you now.

  41. Courtney, I believe the whole reason we are here, the purpose of our life on earth is to learn how to love. Tripp is teaching you how to do that selflessly, and you are teaching all of us.

    And now these three remain: faith, hope and love. But the greatest of these is love. 1 Cor 13:13

    God bless,

  42. Courtney, you and Tripp are in my thoughts always. You are an inspiration and....I honestly don't have words to tell you just how much.
    You know, God only gives his most special angels to really special people. And without a doubt, Tripp is indeed one of the most amazing angels ever!!!

    On a side note....I have banked all three of my kid's cord blood...and I'm not exactly sure how it works. But you are welcomed to it. I know it has to match on something...but if it does, no question...it's yours.

    Always in my prayers and thoughts.

  43. Courntey, you and your sweet baby are in my prayers and thoughts... You both are so inspiring in your love and dedication, and in your perseverance! Tripp is a sweet baby and I ache to hear how he suffers, and how you have to watch and manage his suffering... Always thinking and praying-Kimmie

  44. PS-the Elmo thing is so sweet it brought tears to my eyes! AND-little Tripp is an amazing little drummer! I was sharing your story with my boyfriend and played one of his play videos-we both cried from the sweetness amidst the suffering. All our love and prayers

  45. Oh my, once again you have me in tears. Not out of sadness, just out of pure admiration and amazement. I cried the hardest about Elmo of all parts... I think it just makes me so happy to know there are so many people in this world that love Tripp. You and Tripp have impacted my life so heavily, as the lives of many others. My prayers are with you daily... God does have a plan for you. Lots of love-

  46. I don't blame you for being so excited about Elmo! My kids have always loved him too! I'm not sure which drug is being referred to, but one called palifermin is used to stimulate growth of oral mucosa. Just thought I'd mention it. Take care.

  47. this is from a friend of mine who didn't know how to post on the blogsite...

    Penny Chisamore
    Kayla, could you please post this for me, I haven't quite figured out how to do it. Thanks so much.

    I sincerely hope that this song of Elmo's brings joy to little Tripp's heart. And yours. Myself being a mom of 3 autistic boys doesn't even seem to compare to what your life must be like. Even today I think on what their life will be like when I am gone from this world, and pray to God each day that they will go first, so that he can take care of them until I am ready to join them. No one can understand the pain of that statement, until put in the shoes of moms like us. Send Tripp my love and support, and I pray that he gets better for you, and all of us. Take care and God Bless us, everyone.

  48. Courtney,
    I tear up everytime I read your blog. I think of your little Tripp and send up litle prayers to God to ease his pain tand to give you more strength! You are an amazing woman who has blessed Tripp his every happiness. I assume you do not have help from Tripp's father, but I am so happy you have your mother's support and love!

  49. I love you and Tripp and I think you are awesome. I prayed hard for a miracle when Tripp was really sick and he got better! Now I'm praying that those treatments will improve his situation and I really have a good feeling about this. I'm excited to keep following your story, for the good news to come. :)

  50. Words cannot express everything I feel when I read your blogs...you are an inspiration to me! I love you both and say prayers for all of you daily. I can't wait to hear Elmo's song for Tripp!

  51. I can no longer feel any annoyance towards ELMO, he's won my heart! I hope Tripp loves his personalized song!
    Courtney, I think you're already doing what God would hope of you ; )
    I love your mom for being so amazing to you and Tripp, she must be a really special person, as are you.
    Praying for Tripp always!


  53. I follow your blog every single day to see what's. new with Tripp!! eery morning I wake up, and think about how tripps day will be, the new struggles, and everything that goes along with them. getting to school in morning prayer prayer intention, I always pray for your little boy! he is the strongest kid I know, yet I don't even know him. this little boy gives me so much strength no one can understand!! I pray for you and Tripp everyday and hope and hope and hope he gets better soon!!! can't wait to hear the song from Elmo!!! <3 M.E.H.

  54. *crying* and just loving you and your Mama and your Little Man. . .

  55. Hi Courtney, you don't know me and I haven't ever commented before I felt the need to this time.
    I think you are an AMAZING person that has the strength many of us only WISH we had! Any doubt you ever place on yourself when you think you aren't doing God's work....just WASH IT AWAY!!! You are living out His wishes and wants of you EVERY DAY by caring for Tripp and telling the world your story. I truly truly believe that!Just think... you were hand selected by God to be Tripp's mommy, remember THAT when times are hard. But please KNOW you are doing it girl!!! You are DOING IT!!! You and Tripp are an inspiration to us all!! Thank you for sharing your little boy with us!! It makes my day when I see his God given ear for music and I watch a video of him drumming away!! AMAZING!!!!

  56. What an awesome thing to do, Tripps very own song by Elmo! He deserves it, and so much more! You all do : )
    I've always been the kind of person to deal with pain, but lately I have been catching myself complain about so many little aches and pains, and then Tripp pops into my mind. I remember that what he goes thru every single day is so much more than what I'm complaining about, and he does it with a sweet smile! He's made me stop and think so much, such an amazing little boy!
    YOu are all in my thoughts, as always : )

  57. Hi Courtney,
    Thought you might like to check this out. You can apply for your family yourself for an extreme home makeover! Once you do it, please post the link on your blog or facebook, and we can all vote for you guys!! I would love (and I know tons of other people would as well!) to see Tripp get a special house designed just for him! I'm thinking it would have to have an amazing music room just for his drums! Please do it, Court, you and Tripp sooo deserve this!!!


  58. I wanted to add that I think the Extreme Home Makeover show would be a wonderful way to bring awareness to EB. I don't recall ever seeing a show featuring a family with a child with EB. I hope you do it! Would love to see someone so deserving get something so nice. ;-)

  59. Hi Courtney and Tripp! Just happened to stumble across your blog. My brother was/is an EB baby. He did not have dystrophic, rather simplex. He blistered, scabbed and has a minimal amount of scarring and a minimal amount of digit loss. I am 46, my brother is 49. I can remember VIVIDLY my brother getting his bandages changed when he was little. The screaming from him and the tears in my mother's eyes. I'll never forget it. My brother and his wife have opted not to have children because of this horrible disease. EB is the most painful, unfair, horrific disease any person could endure. I will pray for your strength of mind to continue mothering Tripp and coping the best you can.

    PS I loved, loved, loved the video of Tripp playing his drums. What a smart little boy!

  60. Courtney,
    Thought after almost 5 months of "stalking" your blog almost daily that I should finally say "hello" to you and Tripp! :) You are one amazing Mommy and Tripp is one amazing little fella. You and Tripp have touched both mine and my husband's hearts and we (along with many of our friends) are praying for strength, peace and healing for you guys. Some dear friends that we go to church with have a sweet baby girl (Ruth) who has EB (mild) and she is just the most precious thing...like your Tripp is! Praying Isaiah 26:3 for you and your family and praying that you will keep your heart and your mind focused on the Lord in the midst of all the chaos, remembering that He is Sovereign and has it all under control even when it doesn't feel like it! You and that cute little Tripp are loved all the way from GA! :)

  61. My little girl Kayla who has SMA has been keeping up on tripps goings on with me. she is 3 years old. I like to show kayla others who are struggling like her in life, but she always amazes me and see's right past the things we focus on and see's tripp as a little boy who loves Elmo, plays the drums and who's Mommy takes pictures of him. Kayla does ask if her hurts but quickly dismisses it and talks about how his mommy takes his picture. Thank you for sharing with us the light of your little boy Tripp :)

  62. Love to you Courtney....
    I pray that sweet baby has much deserved healing very soon!

    Can't wait to hear his special song!!!!


  63. Courtney and Tripp,

    I send you love and support and all of the positive energy possible.

    You are an amazing mother, Courtney. And so is your mom.
    I will be following you from this point forward, and will continue to keep praying for all of you.

  64. Today I stumbled upon your blog...and I am forever changed. I am deeply humbled by all you and your amazing son are going through. I lost a child near the end of my pregnancy about four years ago which left me heartbroken as well as having a chronic headache that lasted over a year. Chronic pain is something that I would never have understood without going through it. I am absolutely touched by your blog and the love that you express for your son as well as the heartbreak of not being able to "fix" this! I have heard of EB through the international adoption blogs since we are adopting twins...and one has HIV. I have been feeling pretty overwhelmed and sorry for myself lately in trying to do everything required of me, but I prayed a long time this morning. And, God led me to your blog. Thanks to you and thanks to our loving Heavenly Father for adjusting my attitude. I will be fervently praying for you and your son....with all of my love,

  65. my sister and i ask each other all the time- have you heard anything about tripp? I think about you guys a ton. pray for Tripp always. I dont know how anyone can visit your site and not have the little drummer boy on their heart. the picture of his hand holding elmo is ridiculously amazing. its so real and honest and precious. xo sweet boy.

  66. That is so awesome that THE ELMO is writing your baby boy a song. I hope that your baby boy gets better by the day. God bless you and your son.

  67. I am rejoicing with you and pray Elmo can give him another reason to smile for the day. Pray for both of you Jer. 29:11

  68. I came across your blog tonight, while sitting next to my daughter (almost 5) on the couch. She was watching her 30 minutes of evening tv and happened to look over while I was reading your blog...she wanted to know why I was crying and saw a picture of Tripp. When she asked what happened to him, I explained that he has a very rare and painful disease. She asked all about it and we read some more of your posts together. Tonight, before bed, she asked if we could pray for Tripp and for you and your family. I just wanted to share that not only did you gain another Mommy who is thinking and praying for Tripp (and you, you wonderful human being) but you are also touching young people and I know that seeing people like you, the kindness and strength and hope that you exude, will help shape and mold my daughter. Thank you for sharing your story with the world.

  69. Courtney, your courage and strength inspire me to be a better mommy to my two babes. We are glad that Tripp is feeling better and we continue to pray for you both. We hope that Tripp continues to improve and can drum even more!

  70. Courtney - I didn't see a way to contact you - my 5 yr old son was VERY touched by Tripp's story and would like to send you some pictures and some "cream" for Tripp's skin.
    My son also made us stop what we were doing and pray for Tripp and he promises to pray for him every day. He said in heaven Tripp will be perfect, but he wanted him to be perfect on Earth so he could be with his mommy and daddy.
    I would love to be able to fulfill his desire to send a happy box (as he called it) to Tripp.

  71. Courtney, I found you through babble when a mom from our non-profit was nominated. Tripp immediately caught my heart, his sweet smile is amazing. I really don't have words for how my heart aches for this sweet boy and for you, I literally fell in love with his sweet face. I will lift sweet Tripp up to the Lord and pray for healing and a cure for all the babies, children, and adults who suffer from EB. Thank you for bringing awareness, before your nomination on babble I was ignorant to this disease, so thank you for sharing Tripp and your journey with the world. God Bless.

  72. I love you dear child. Your mother did an amazing job of raising you to be an amazing Godly child. Remember, none of are perfect, we all have our faults, but I do know that you will be blessed with jewels in your crown one day from our Heavenly Father. My prayers are with you, your family and especially sweet Tripp. God Bless you guys.

  73. love your sweet boy!!! We pray every night for him!!

  74. This is the first time I've read your blog (I found it on a friends facebook page) As I have been reading this with tears rolling down my cheeks I can't believe I let something as simple as my daughter cutting her hair frustrate me, your strength and determination to continue on your journey with Tripp blows me away! You and your precious little boy are an inspiration. Maybe touching the lives of all these people and the love we are all feeling for your family is God's plan. I am keeping you all in my prayers.

  75. i've got to read your blogs and it makes me cry. it blew me away. :( you are such a wonderful mother. if i were in a situation same as yours, i really don't know what to do. :D your son, Tripp is a great blessing from god. just continue praying 'coz God is the only one that can give us the answers. may the angels of god watch over you and tripp. may you be blessed with more support and love. just stay strong. and godbless.

  76. Wow, I cannot imagine to be in your shoes, you are a super mami and all those who go through this. Love is tested and you guys have surpass the test.