Monday, October 3, 2011

Letters from... Me.

Dear Tripp, 
I'm sorry these past few days have been so rough, bub.  It's not fair that you have to hurt.  It's not fair that you can't do the things that normal kids get to do, or that you have to take a bath in tremendous amounts of pain with raw, open sores all over your body.  It's not fair that every single breath you breathe is like work and a struggle to stay alive.  It's not fair that as you lay next to me right now, you're on so much medicine but yet you are itching all over and completely miserable trying to sleep.  You never catch a break.  A good day for you would be someone's worst nightmare.  I'm praying hard, buddy, that I make the right decisions coming up soon.  I pray that we can find out what's going on with you (this time) and that it's something that we can fix (temporarily).  But if I'm going to be honest with you... I'm praying for a miracle.  Because we are getting to the point where your sores and infections are taking over and there's not many options left to treat them without sticking you and putting you in the hospital.  I said I wasn't going to do that to you.  But that will be the hardest decision of my life.  I hope you'll help me through it.  You're so brave, bub.  
I love you.

Dear Mom, 
Oh Momma.  I'm so selfish sometimes.  Like tonight when bath was going so horrible and I "shut down."  I got quiet, I got short, and I got moody.  But you, angel mother... you take it all in stride.  You're sitting there, watching your daughter in pain AND your only grandson in pain.  Probably watching every word you want to say because my bratty self might jump down your throat (even though I learn that from you:)  And I never ask if you're okay.  I'm sorry.  I know I get my strength from you, you superwoman... but you don't have to always be strong for us, you know?  I'm the luckiest girl in the world to have you.  You're my strength when I have none left, you're my brain when mine is just plain "broken," and you give me hope when I'm ready to give in and give up.  I am who I am today because of you- because of what you've instilled in me and because of the example you have shown me.  I am so proud to call you my mom, but also proud to call you my very best friend. 


Dear Dr. Defusco, 
I know that when we had to choose a pediatrician on the south shore, that God led me right into your office.  You know why?  Because we weren't even supposed to see you that very first day.  I had called to make the appointment with another doctor, but she wasn't in that day, so they gave us your appointment.  And after I met you, I knew that you were ours and that we would never switch pediatricians again.  I could tell the very first day that you love your patients and that your heart is in your work (and I truly mean that).  I could never do what I am doing without you.  You put your whole heart and soul into helping Tripp from day one, and from the bottom of my heart I thank you.  I appreciate you.  And I hope every doctor in the world can learn from your devotion.  You never get frustrated with my constant calls or texts (at least you don't show it to me:).  I know you feel helpless just like I do... and I know that this disease is not what you are used to dealing with, because you are a pediatrician- not a hospice doctor, not a pain management doctor, not a hematologist.  But do you play all of these roles and more for Tripp?  Yes... and you play them well.  It has been such a blessing to me not to have to deal with a million different doctors- because YOU take care of what needs to be taken care of (with the exception of our fabulous ENT, Dr. Rodriguez). You communicate with the other doctors so I don't have to.  I just want you to know that you are more than a doctor to us... you are a friend.  And pretty much an angel.  
No matter what happens in the future, you are a HUGE part of the reason I got to see my son turn 2 years old this year.  Thank you for believing.  Thank you for your persistence.  Thank you for encouraging me.  And thank you for never giving up on my son. 

Dear all of you precious souls who support us, 
You know who you are.  And I'll be honest... do I get time to respond back to every message or e-mail?  No.  But do I read every single message and e-mail I receive?... YES.  They bring me hope and encouragement when I'm having a rough time.  They make me feel like I'm not in this alone.  The amount of support we have received is indescribable.  I am not sure why we were so fortunate and blessed with all of this, but I know that I thank God every day for the people He has brought into our lives.  Thank you all for standing by me through the ups and the downs.  Whether Tripp is thriving and standing up to play, or whether he is sick and totally immobile, we always have people who are supporting us, praying, and believing in a miracle.  Please know how much that means to me.  It's hard to thank you each individually... so thank YOU reading this... for reaching out to us, following our story, and praying for my little Bubba.

Dear God, 
I hope you didn't think I was going to give you a break tonight, did you?  I need you tonight more than ever.  I know that you know pain, God.  You sent yourself in the form of man to Earth to be crucified- the worst possible form of death (other than EB... just kidding...kind of).  You know Tripp is suffering- just like you suffered.  Sometimes he reminds me of you, God... when he cries and coughs really hard and all of his little scabs start to bleed and there are lines of blood just running down his face.  I think of you and the crown of thorns stuck into your head.  And how many times you were beaten and tortured.  I'm trying, God.  I'm trying so hard to understand what Tripp's purpose is.  Or more than that, HOW LONG his purpose is.  I know he's brought people back to prayer, back to church, helped us to love our children more, and appreciate little things that we never appreciated before... but he's miserable, God.  My sweet boy is tired.  And I know that I'm not telling you anything that you don't know... Heck, maybe you and Tripp communicate on a daily basis and Tripp knows exactly how long you expect him here on Earth.  That's really cute how you guys are keeping me out of the loop, though... Probably joking together and saying, "how many times do you think she's going to ask for her miracle today?"  No, but really... I trust you, God, I really do.  And I truly believe that you know what you are doing, so...

"When I am afraid, I will trust in You."
-Psalm 56:3

I'm afraid.  I'm sad.  I'm anxious. 
But I'm trusting


Sweet Jesus, what I wouldn't give to go back to this day and be able to look him in those beautiful brown eyes again... 



Love,
Photobucket

82 comments:

  1. I just wanted to say that you are the strongest mommy ever! I am so sorry your little boy has to endure so much pain. He is a little fighter! Praying for you and your little boy.. <3

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  2. I have been following your blog since kelly posted for prayers. I usualky dont comment. But, tonite i felt so strongly to say that my family all the way here in northern calif. Is thinking and praying for your sweet little guy! Your little boy has touched our hearts so deeply! As a nurse my self i know how very tired u must be trying to balance your training while it be taking care of your precous little boy! Im so glad tripp has his own elmo song! He deserves the whole sesame street cast singing to him while you rock him!! :)

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  3. Dear Courtney, my heart breaks for you. I don't know if I could be as strong as you. I pray everyday for God to heal Tripp, or take his pain away to make him comfortable, and to give you strength to carry on. I have followed Tripp ever since I found him on Bella's Blog, along with Daylon. I call them my little EB babies. I frequently ask my friends and family to pray for him. He's not my child, but it hurts to see him in so much pain. I know God is keeping a close watch over him untill it's time for him to take him home. Tripp has done his magic on me. I have become much closer to God thru him, and I think he has touched my sister, she is now going to church and reading her Bible.
    Love & prayers,
    Carla Spradlin
    Taylors, SC

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  4. My love, my thoughts and my prayers are with you, your amazing Mum and that beautiful little man of yours.

    May you feel Gods arms wrapped around you so tightly.

    Love Bec

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  5. I cried and prayed for your precious angel tonight. I asked God to take his pain and to be with you and your entire family. I truly hope you get a miracle for your miracle. Tripp is a miracle. You my dear are an angel. You were put here to take care of him and you are doing a fabulous job. I could never imagine the pain you are going through as his mother.
    God Bless and Keep you all!

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  6. You are the strongest most amazing person EVER. God is beaming with pride over you. I will continue to lift you both up in prayer. Those letters were so raw, honest, and beautiful. Thank you for sharing your heart and soul like you do. I love you dearly and think and pray for you often. Hang in there. Tripp is the luckiest kid on the planet to call you mom.

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  7. Your mom taught you the art of mothering ... when you look at her patience, her endless devotion, that endless love she has~ those are all the traits we witness in you for Tripp. What a wonderful mother you and Tripp both have. I offer my prayers for your sweet little Bub and my thanks for sharing him with us. This world is a better place, all because of Tripp. A miracle is what I will pray for, it is what he deserves. Tripp, you are so brave. I won't ever stop praying for you.

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  8. I have no words. I'm praying for Tripp and sending you, him and your family lots of love. (hugs)

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  9. Tears and prayers for patience, strength, and relief. God hears all prayers and He may not answer when we want Him too, but at the right time, perfect season, peaceful moment, Baby Tripp will get his wings. And you will know that all is well. I pray for peace that.surpasses all inderstanding.

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  10. You are the strongest, most patient person I have ever met! I dont know you personally but when reading your post I feel like I'm right there with you and your beautiful baby Tripp! You and Tripp make me realize just how special life is and I appreciate my kids so much more now! I pray for Tripp everyday and I hope that by telling his story to people I meet someone will come up with an incredible miracle! May God bless you ( with a miracle),Tripp, your amazing mother, and all the wonderful doctors that are fighting so hard for your precious little boy!

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  11. Really praying for a miracle for you and especially for Tripp. I don't think there is a more deserving person out there.

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  12. Oh my goodness, Courtney, my heart just aches for you. Thank you for sharing and please know that you, Tripp and your whole family are in my prayers. Praying for a miracle for Tripp.

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  13. Courtney, I am praying God gives you comfort, that he holds your heart ever so gently~ the way you hold Tripp, and that he gives you the strength you need right now. Hearts are breaking everywhere when we think of Tripp, for we want comfort for him too. I am happy to be a prayer warrior for your little man~ I love you and Tripp!

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  14. You are such an inspiration! Praying for a miracle right along with you!! God bless Tripp and your entire family!!

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  15. Hi Courtney! I can't imagine how difficult this is for you and all those who love Tripp. I believe there are no words that can help you, however I would like to thank you for inspiring so many people! You are a great example of strengh and I truly believe that Tripp is an angel here on earth ! I am from Portugal (look how far your strengh has come!) and everyday I send all my prayers for you! I hope that soon you will get your miracle. I send all my love for you, for your mother and for our little angel! Take care

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  16. Praying so hard for you Courtney and Tripp.

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  17. I haven't met you but I love you and your sweet little boy. You are the strongest, most amazing mom....I've been praying (in tears) every day for a miracle for Tripp but I'm not giving up! More than anything...I'm praying for his comfort.

    Lots of hugs and love-
    Mary

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  18. Courtney, Praying harder than ever for a miracle and that God please fulfill His plan with Tripp- not suffering any longer. It just isn't fair God change other lives through the expense of a poor baby's suffering- just so many question's for God.... I don't understand and am struggling so hard to trust and am not even in the situation! I am truly in awe of you and your unwavering faith. Praying for reprieve from pain and suffering for sweet Tripp and mama too....I do know that the faith of a mustard seed is what is needed and there are so many here having so much more--- Please God provide a miracle.......

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  19. What a struggle it must be to want him free from pain but also not want to let him go. You are inspirational, although I know you'd rather just be a normal mom watching her son run & play and give you a hard time during his terrible twos. Tripp is definitely a God send and you're so right. God knows the number of Tripp's days just like he knew the number of days I would be able to keep my daughter in my womb before she was stillborn. We cannot understand God's plan in this life but it's so obvious that Tripp was sent for something so so big. I pray with you for a miracle for Tripp, for you, and for your mom <3

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  20. Courtney, today your letters have moved me to tears. I pray for you and Tripp often. As someone who doesn't handle pain well, I can't imagine what living with EB must be like. And I don't know how I could have the strength you have to do all the things you do for Tripp, continually and without a break.

    I will also pray for your miracle. Of course we all know Tripp is already a miracle, such a special child of God.

    I hope you can feel the love that surrounds you and Tripp as we all pray for you, and gain from strength from knowing how many people are praying.

    Julie in Maryland

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  21. My heart is with you and your baby boy. You are truly selfless.

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  22. Dear Mommy-to-the-most-precious-baby-EVER,
    You bring us to tears, you make us stronger, you make me want to be a better person, you make me want to be a better mother. No letter, no words can ever thank you for that. Thank you for allowing Tripp to crawl into my heart and thoughts. Take care!

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  23. You are one of my most favorite EB Mommy's. Hang in there and keep trusting, we will all hang in there and keep praying. I was thinking of you all last night. I put Drake in his Elmo pj's since Elmo is Tripp's favorite. I hope he has a peaceful day.

    Thinking of you all daily.

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  24. I pray every day for you and Tripp, Courtney. You are so right that he has brought so many people back to prayer, back to church and made us appreciate our children and all of life's blessings so much more. God bless you both.

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  25. Courtney, my heart is aching for you and Tripp. I so wish I had some answers for you. You are such a strong, wonderful mom and your faith and love in God is amazing.

    I don't know much about Tripp's condition but my husband is a physician and he is familiar with it. I don't want to give you advice but I am wondering if you have considered moving far up north to where there is a lot of cloud cover. My hubby said that children with this condition benefit when they are not exposed to a lot of sunlight. My husband knows of a family that adopted a child with EB and they moved to Prince George BC because there tends to be a lot of clouds.

    I am praying and praying for you and Tripp. Hoping for a miracle and relief from this pain. What a wonderful mother you have. I see you come from a line of selfless love, handed down from generation to generation. I know this is so hard for you, hard to watch your child suffer.

    So many are praying for you. Continue to keep your eyes on Jesus and He will continue to give you the strength to make it through.

    Praying and praying,
    <><

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  26. Hi Courtney and Family~

    Courtney, I don't know if you received our card (I am sure you receive a thousand pieces of mail each week) but I can't tell you how much we think/pray for your little boy. We, in Wisconsin, and our extended family in Rwanda, Africa are praying for all of you. Tripp truly has done something amazing by bringing so many people in this world together. Please know that we are thinking/praying for all you. My husband is a Rwandan genocide survivor and has shared with me stories of suffering I can't imagine. He always says that "God provides" and I know God is providing for you and your little Tripp.

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  27. Courtney if I could give you a hug I would! I know you need on to just lean on and cry and let all of that frustration out.

    I pray for you, Tripp and your family daily. I pray you get your miracle in whatever form you need it to be in!

    Much love,
    Rhi*

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  28. You're a very strong person. I dont know how you go everyday but then again, I dont have sick children. Im sure if I did, I would know where to find the strength from. I pray all the time for you and Tripp. I have never heard of EB until recently through your blog. Its very very horrible. I have never seen anything like it. I hope that he gets better soon and that someone finds a way to help him.

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  29. I've followed you're little bub for a while. Your strength is amazing. My heart breaks for the pain he endures. I don't have any children of my own, but I'm auntie to several. So give that beautiful boy a kiss and gentle hug from auntie RiRi.

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  30. I don't have anything to say, dear Courtney, so I will just send you hugs

    ((((((( huuuugs)))))))

    hugs that are meant to give you strength for another day of fighting and hoping for a miracle, another day shared with your great little fighter who can still bring a smile to your face through it all ...

    Tripp sure has a mission here on Earth and even though it is a rough one, I know he is doing it beautifully and God knows it too and when the right time comes, He will give Tripp the golden star for the great job he's done, the great lessons he taught ... and the same goes to you, my dear ...

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  31. I have been following your blog for a while and you are such and inspiration to me and Tripp is nothing short of an angel. Everyday I pray for a miracle for your family and will continue to do so. Tripp is always on my mind and I hope more than anything for his pain to end. You are an amazing mom and your mom should be so proud of the daughter she raised. My heart goes out to you and Tripp.

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  32. I am so happy that you read the comments that people make to you on fb and on your blog. You need the support of all of us and you need to know how many people pray for you, Tripp and all of those who care for the two of you. You are one incredible mommy! I pray that you get the comfort that you are desiring...that you get the reassurance you are looking for. You will make the right decision. I have faith in you.

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  33. Dear Courtney,
    I am praying for you and little Tripp. I know that God will take care of you. Tripp is the cutest little boy ever. I love to read your blog and the pictures and videos are adorable.

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  34. My prayers are with you and your family, as they are daily! You are incredibly strong, and a great mommy role model. My heart aches with so many others for you. I wish I had better words of comfort for you. God Bless you, Courtney!

    "For I know the plans I have for you," declares the Lord, "plans to prosper you, not to harm you, plans to give you hope and a future." (Jeremiah 29:11)

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  35. I love you guys! I'll be praying hard for Tripp and you tonight. Much love,
    Laura V.
    Bergisch Gladbach, Germany

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  36. I am so thankful for your blog! You and Tripp (and your mom!) all inspire me for your *true* strength....you allow others to step into your shoes and are willing to be vulnerable enough to discuss the hardest of emotions. Your unwavering faith should touch every single person that reads this blog! I can only imagine how He beams at you for the love you provide for Tripp and for all of us by sharing your world and inspired thoughts. I will continue to pray for all of you...
    Cynthia
    http://www.adreamadoption.blogspot.com

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  37. Courtney, as always, you put my "normal" life struggles with a toddler in perspective. As tears stream from my eyes as I read this post and my little boy says "mama what da matter?" I am humbled by my earlier frustrations and sad that you don't get these wonderful interaction experiences.

    I pray for your continued strength and wish there were more that I could do.

    I know that decisions you make for sweet Tripp will be right because the decision for you to be Tripp's momma was the right one.

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  38. Dear Courtney,

    As I read your letters today, tears began streaming down my cheeks. Your letters touched me in such a profound way that it compelled me to start praying before I could even finish reading the words.

    I prayed that Tripp's miracle is received. I prayed that Tripp has less pain and his wounds are healed. I prayed that God would heal your heart and ease your pain when you are sad. I prayed that if God doesn't plan to send a miracle (because you're right, only He knows the plan), that he show us the way. And lastly, I thanked God, right there in the middle of my prayers, for showing me the way to you and your family. It is a true blessing that I found you.

    I send you my love, my strength, and my hope. And remember, when you need us -- just keep writing. We are all here. Kinda like God and his secret meetings with Tripp, we're all with you in spirit, whether you can see us or not. Especially moms like me, who are far away.

    A quote for you: “Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”

    You, Courtney, are the epitome of true strength. And for that, I have all the admiration for you in the world.

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  39. I am so sorry Tripp and you are going through this, I´ll be praying hard very hard all the way from South America.

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  40. Hi Courtney,

    Just wanna share this song that greatly suits you as a God's child who trust Him. My thoughts and prayers for you and Tripp all the way. <3

    "Warrior Is A Child" by Gary Valenciano
    Lately I've been winning battles left and right
    But even winners can get wounded in the fight
    People say that I'm amazing
    I'm strong beyond my years
    But they don't see inside of me
    I'm hiding all the tears
    Chorus:
    They don't know that I come running home when I fall down
    They don't know who picks me up when no one is around
    I drop my sword and cry for just a while
    (Look up for His smile)
    'Coz deep inside this armor
    The warrior is a child
    (Aahhh)
    Unafraid because His arrow is the best
    But even soldiers need a quiet place to rest
    People say that I'm amazing
    I never face retreat, oh no
    But they don't see the enemies
    That lay me at His feet
    Chorus:
    They don't know that I come running home when I fall down
    They don't know who picks me up when no one is around
    I drop my sword and cry for just a while
    (Look up for His smile)
    'Coz deep inside this armor
    The warrior is a child
    (Aahhh)
    They don't know that I come running home when I fall down
    They don't know who picks me up when no one is around
    I drop my sword and cry for just a while
    (Look up for His smile)
    'Coz deep inside this armor
    The warrior is a child
    (Aahhh)

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  41. Tripp is so lucky to have you!! I read (or look) daily at your blog. You have more strength than any woman/person I know!
    One day Trip will no longer be in any pain, God is the only one who knows what route he will go but regardless he will be a happy healthy toddler with NO pain!!
    God Bless you Courtney, you are AMAZING!!!

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  42. Courtney,

    I pray for a miracle for little Tripp every night. You are an incredible mom, and I honestly don't know how you get the strength to meet each day's challenges. May God bless you and your family.

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  43. I do not pray enough and I realized while reading your story that God knows exactly what everyone's prayers are, but it is us who needs to pray them for comfort and peace. Your little boy has shown the world who God really is. He is an amazing little man who has an even more amazing mother. You are showing more and more people how Christ wants us to be by your fight and devotion to your son. I will pray even harder tonight, and not just for your precious boy but for you and everyone else that surrounds him. He will be just fine, because he has God on his side and so do we if we ask for it. Prayers and love!

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  44. You are an amazing mother. I just want you to know that I am praying for you all the way from Wisconsin.

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  45. Praying for you in Texas, I can only imagine how much pain he is in. He is a blessing to everyone. I check your blog nightly and pray for Tripp and you. Thank you for sharing your baby with us! You have made me realize how far away from God I had gotten... Thank you for helping me find my footing again. Sending prayers and love your way

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  46. My thoughts and prayers are with you and your precious little man, he is truly a gift from God who has touched so many lives. A mother myself, I can't imagine what you are going through, you are truly an inspiration. May God bring you both strength and comfort...

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  47. Courtney, I have to tell you there are so many times when I read your blog and feel God. The feeling brings me to tears and I always say a prayer for Tripp. I can't imagine how much you must be hurting, but your faith and the strength you appear to have will constantly keep you afloat. This will help you through anything that comes your way. I can tell by the way you write about Tripp and when you talk to God. Continue to trust, because it will keep you going no matter what. I am definitely not an expert in trust, but I do know what the results can be if you don't. I have all the faith in the world in you and in Tripp. I love yall even though we have never met, I know that I was meant to know your story.

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  48. "Be faithful in small things because it is in them that your strength lies." -Mother Teresa
    May God continue to bless you and Tripp with the "small things" and the support in which you both require to survive, even when it's just enough strength for you on behalf of him. You are truly an inspiration!

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  49. Lord,
    Fulfill your purpose for Tripp; do not abandon the works of your hands. (psalm 138:8)

    Lord,
    Hem Courtney in - behind and before; place your hand upon her so that wherever she goes and whatever she does, she will be accompanied by your presence. (psalm 139:5-10)

    Lord,
    Let your peace, which transcends all understand guard Courtney's heart, her mom's heart, and their minds in Christ Jesus. (Philippians 4:6-7)

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  50. Courtney, you are truly an example to all of us mothers. Your strength and courage are absolutely incredible and I admire you so much. Tripp is truly an angel and I am so grateful I came across your blog. My heart aches for little Tripp but you can definitely see what a fighter he is and your selfless love is amazing. Thank you for putting perspective back in my life. I hope your prayers are answered soon.

    From a stranger and fellow mommy.

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  51. courtney, you are an inspiration to all of us! sweet tripp is an angel here on earth. his suffering should remind us to see jesus in every person we "meet" - his suffering will not be in vain!
    thank you for all you do....
    god bless y'all!
    susan
    w-s, nc

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  52. Dear, sweet, beautiful Courtney,

    Thank you for sharing your beautiful heart, and your precious prayers and "notes." You continue to transform and change my heart and my life ~ from watching yours through blog world. You are in my prayers, in my heart....I am asking Jesus to bring your whole family relief and peace. Much love ~ alice

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  53. Always praying and always in my heart.
    You are a very amazing Mommy.
    Thanx for sharing.
    Everytime I see a Elmo now I think of your sweet Tripp.

    {{HUGS}}

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  54. I am praying for Tripp's miracle.

    This is the most beautiful post I've ever read. Thank you.

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  55. Praying for precious Tripp and for you and all around you to have strength and courage with each passing day!

    "Be strong and of good courage, don't be afraid, nor be scared of them: for Yahweh your God, he it is who does go with you; he will not fail you, nor forsake you." Deuteronomy 31:6

    HUGS & Blessings :)

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  56. Courtney,

    You are such a brave mother & woman all around. Many mothers reading your blogs could not even imagine what you are going through, I know I can't! I shed tears & think of you & pray for you all the time. Tripp is such a special & blessed little boy to have such a superwoman mom like you. And I know that your mother is nothing but thankful to have you & Tripp in her life as well, and probably knows how grateful you are to her even when/if you don't say it. You're amazing & courageous, and I know that little boy that you look into the eye's of every single night knows the same thing & more! You are definitely an inspiration, and I am confident that whatever happens Tripp knows how much you love him.

    God Bless You, Tripp, & Your Entire Family!

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  57. I've been following Tripp's story for awhile now and it still brings me to tears. You and Tripp's story have impacted my life forever. Courtney, I just want you to know that the world would be a much grander place if there were more people like you in it! You are a true inspiration and I could only aspire to be half as wonderful as you. Your strength and patience is beyond amazing. Tripp's will to live is so completely and utterly amazing that I know God has his hand in it. That is definitely one special little boy. He never ceases to amaze me! There are not enough kind words that I can say about him or you. If you ever need anything, just know that it would be an honor for me to help you in anyway possible. You, my friend, are the true definition of a WOMAN! May God continue to bless you and your family and guide you throughout this journey!

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  58. Courtney,
    The tears are streaming down my face. Your strength is incredible and unbelievably inspiring. You were chosen to receive your "angel" because God knows you will share his message. The two of you teach all who share in your story to love deeper, more often and unconditionally. You and Tripp will forever remain in my prayers.

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  59. My heart just aches for you, but I KNOW that God picked you to be Tripp's mama because you are the most amazing mama. God will guide you through this. I am praying for YOU and for Tripp.

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  60. Courtney,
    Thank you to both you & Tripp for sharing your incredible story. He looks so sweet in all of his pictures and his drumming skills are very impressive. :) Your life together have inspired so many! Please continue to stay strong. You both will be in my thoughts and prayers and may you find comfort in one another and through God.
    Have a blessed day!
    Angie

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  61. You must be one special person to have been trusted with this Angel here on earth!

    I pray for your little angel lots!

    I'm very impressed with Tripp's drumming skills! He is a little musician for sure!

    You should be so proud of your family! I know God is!

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  62. As usual, I'm at a loss for words. I SO wish I could take sweet Tripp's hurt away! We pray for him daily, and are praying for you and your mom as well. God is with you and He will give you strength and peace.

    Love from TX,
    Laura

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  63. Hi Courtney - I'm a mom to five children... the youngest was finally a boy... and I've read your blog from the beginning. I've never commented before but felt the need tonight. I just wanted to tell you that we pray for you guys all the time - and that we are in MN... where all the EB stem cell transplants are taking place... and if it ever happens that you two find yourself here for a transplant, I will drop everything I have going on and help you in any way I possibly could.

    Your daily life makes MY daily life look like a picnic in the park.

    God Bless!

    Cathy

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  64. Tripp and your family are AMAZING. He has touched so many lives. I pray for his comfort, your strength, and peace.

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  65. May you experience the love of Christ, though it is too great to understand fully. Then you will be made complete with all the fullness of life and power that comes from God. Ephesians 3:19

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  66. Oh man, Courtney, we love you. We are Right. There. With. You. Always.

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  67. I stumbled across your blog several hours ago and I'm at a loss trying to leave other than to say thank you. I hope you feel the strength and support from all the prayers you and Tripp are receiving. I am so humbled by reading your story. The strength you and your mother have found through God and your love of Tripp is an inspiration. I believe with you that Tripp will soon be healed or free of his pain.

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  68. *crying and crying out on your and Tripp's behalf*

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  69. Tears. More tears. And prayers. Sweet Tripp. I have a 21 month old little guy and the thought of going through this with him....I just can't even go there. I cry for you and Tripp, and I pray for you and Tripp, and your family, and your doctors.

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  70. Storming the heavens in prayer for Tripp!

    Andrea

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  71. "Let your gentle spirit be known to all men. The Lord is near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus." Philippians 4:5-7

    I also have not commented on your blog until tonight. There are hardly words to describe how deeply you, Tripp, and your parents have all affected my outlook on life's precious moments. I firmly believe that God gave you Tripp knowing you would love him through thick and thin and put his needs before your own. Bless your mom for all her selfless help. I will continue to pray for peace, comfort, and understanding. Always hoping for a miracle :) . I am 27 and have two children of my own, a 5 year old boy and a 3 year old girl, and one due in February. I cannot imagine the strength it takes to carry out the day to day chores as a mom, while at the same time your heart is in so much pain. I love the videos of that sweet boy. He has so much joy. He knows your love and that you are doing everything in your power to help him. Have peace that God is in control. In Him, Melissa

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  72. Hi Courteny, I just found you through Top Mommy Blogs, and I had to comment, becuase my heart breaks for you. I don;t have a sick kid of my my own (and I realize what a blessing that is) but I've stood by two of my best friends as one has a daighter diagnosed with cerebral palsy and the other has a daughter that just underwent a heart transplant because she was born with half a heart and has now been diagnosed with a blood disorder in which she can't produce white blood cells on her own. I know what it's like to pray for a miracle as you watch a child suffer, and I will be praying for a miracle for you and Tripp as well. One verse that has helped me during the roughest of times is from Isaiah 45:2-3 "I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron. I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name." Find peace in knowing that He walks before you, and He has the ability to level your mountain. He loves you and He loves Tripp more than you could ever imagine. I'm praying for you!

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  73. Baby Tripp IS like Christ. He is such an incredible blessing to all of us! He reminds me of Diamond from the book: At the Back of the North Wind - a children's book written by George MacDonald.

    You obviously don't have time to read right now but listen to it with Tripp and your mama on your laptop here:
    http://www.oneplace.com/ministries/focus-on-the-familys-radio-theatre/listen/at-the-back-of-the-north-wind-episode-1-224920.html

    In the meanwhile praying for you guys...as always.

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  74. You are the greatest and most loving Mother a child could have. I pray for sweet Tripp every day. It breaks my heart to think of all the pain he goes through every day. You have to be the strongest woman I know. God knows what he is doing and you will find peace with him. God Bless You and Sweet Tripp

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  75. My heart aches for you. I know your mom understands. Thank God for amazing docs, and mommies! Prayers as always.

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  76. Courtney, I can not even imagine what you and your mom and dad are going through but I know speaking from a mothers point of view she would never want to be anywhere eles. My daughters have told me before how sorry they were for raising their voices or holloring at me for something but they knew that I would always be there for them when they were in need or even just like you said to sit by your side. A hug or even a look in her eyes is all she needs. Wish I could do more. Give Tripp our love and prayers.

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  77. Tripp is a very lucky boy to have such a supportive and caring mommy. Strong mommy = strong baby. Rock it girl ! We got your back!

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  78. I don't know you, and you don't know me. What what I do know is that you are a WONDERFUL mother and an inspiration to so many people. Tripp is so lucky to have you and it is so encouraging to read how you trust in God and give HIM your situation. Praying for you and your son. Jeremiah 29:11- God's plans are perfect and there is a reason for everything! Keep fighting!!

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  79. He's the cutesy little boy ever and your best mum ive ever seen

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