Thursday, January 5, 2012

Catching up...

Hi there. 
I want to first thank everyone for the encouraging comments and also all of the holiday wishes!
And also a huge thank you to everyone who sent gifts to us!  You guys are amazing. 
I hope every one had a great Christmas. 
This Christmas was a hard one for us- as I knew it would be.  When I think of what Tripp "should be" doing at 2 1/2 years old,  it makes me really sad to think about all that he is missing out on.  Santa Claus, opening presents, baking cookies, etc... We've never even come close to that.  BUT, he is surely surrounded by LOVE, and I think that is what's most important.  

This Christmas was pretty low-key for us.  On Saturday (Christmas Eve), my parents went to my family's house in Lutcher, and Stephen spent the day here with Tripp and me.  Then that night, my mom kept Tripp so we could visit with some of my family here.  Then, me, Stephen, my brother and his girlfriend Ashley all went to midnight mass.  On Sunday, Tripp's MeMe and PawPaw Carey came to visit and exchange gifts for a couple hours.  And then finally, Christmas night was when Tripp was alert enough for me to open his presents for him (it was bath day, so he had sedatives in him).  I could have just wrapped about 10 empty boxes, because the only part he liked was the noise when I tore open the paper.  He wasn't interested in any toys I bought (which I expected... he hasn't been in to ANYthing lately).  He did however, play for a few minutes with one new little music maker.  
And when I say "a few minutes," that's even pushing it.  Playtime has pretty much been non-existent (even on the rocker) and he hasn't stood up in about 3 months.  


Bubba's days have been about the same, give or take some really bad ones.  His bottom is really raw right now, so even diaper changes are dreaded and he needs extra pain and anxiety medicine for each change.  And it takes him a while to settle down after they are finished. 

Though he is struggling with pain and I'm trying to find the right pain regimen (which is nearly impossible when he can't speak or communicate about how the meds work or make him feel and also the fact that we have no idea how his body is metabolizing it), he is also struggling with anxiety.  I think he's always "on the edge" and sort of always "expecting" that we are going to do something to him.  He anticipates diaper changes and trach changes at night, so he cries and switches between me and my mom in the rocker almost every 2 minutes at night.  We talk to him constantly, explaining when it's "time" and "not time" for diaper change.  But I think the trust factor is gone and he doesn't trust that we mean what we say.  It's horrible and sad, but I have to change him... I'm not sure how to go about fixing this anxiety issue when changing him has to be done. 

I've been doing his baths earlier in the day. I try to have everything set up before he wakes up in the morning, that way I can give him his sedatives while he's still asleep and he doesn't have to wake up and be anxious all day. We just get it over with.  I was waiting until late in the evenings before because I had to give him the sedatives, and I didn't want him to sleep all day after bath.  But at this point, when he's just miserable all day anyway, I figured the sooner the better where he could relax for the rest of the day knowing it was over (until night time of course, when he gets anxious again). The sedatives don't even really put him out anymore anyway, they just work as an anti-anxiety for him- even at high doses.  Sometimes I think my baby is super-human;)

So still, our days consist of being in the rocking chair and rocking all. day. long.  Thank God I don't get "rocker-sick," because I get car sick, plane sick, boat sick, etc. ;)

What gets me through each and every day is that one line from the poem "The Brave Little Soul" that I posted previously: "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength."  I have to trust that God is with him and that He is helping him bear this tremendous amount of pain, because I don't know how any child could possibly be this strong all alone.  I talk with him every night... about God, about heaven, and about how Mommy will be okay (one day) if he is too tired and ready to go home to heaven.  
But this kid is a fighter.  Sometimes I just wish he wasn't so strong.  My heart is aching for him to have some peace, however that my be. 


I'm so grateful for all of the people in my life.  This past year has been life-changing for me in MANY ways.  I have made some A-mazing friends- friends that will last a lifetime.  Friends that have been there for me through every hardship- even from a distance.  These people have gotten me through the hardest time of my life.  And for them, I am forever grateful. 

I am also blessed to have an amazing guy in my life.  I thank God every night for sending me someone who loves me and loves my son enough to face our situation head on.  I am grateful that Tripp finally has a man-figure as an active part in his life (other than his Papa and PawPaw Carey).  It was a scary feeling going through a bad divorce and wondering who in the world would ever want to take on a woman (a stressed out woman, might I add) who never leaves the house...  but also her sick child who requires her attention 24/7?  I've known Stephen since kindergarden- we went to school together until high school.  But there's something about being a little older and a little wiser... it isn't until then that you know exactly what you want (especially the second time around).  He came into our lives and has been exactly what I have needed.  I could not have made it through this past year without him.  I couldn't ask for anything more.  He is wonderful, his family is wonderful, and I finally know what being happy feels like.  

And guess who is in town this week...??
My sister and her husband!
We didn't get to see them for Christmas, so we are so excited to get to spend the week with them.  We will do our family Christmas tonight, opening presents together and I'm sure eating a whole lot:)
They don't leave until Tuesday morning... and I'm never successful in getting them to stay longer, so I guess I'll just enjoy the days that we have! 

I hope you all have a great weekend! 
Thank you, as always, for the continued prayers for peace... in any form. 



Love,
Photobucket

142 comments:

  1. Stay strong little fellow. You help and make me to appreciate everything that I got and not to think what I don't have. Thanks for that. Godspeed.

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  2. Dearest Courtney,

    I can not send you enough love and prayers. We all feel like Tripp is part of our families. My heart aches for you. I pray for you guys daily.

    You have fang and support all over the world!

    Think of all the peopleyou have taught about EB! You are inspiring! I hope you realize that!

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  3. Courtney, you and your little Tripp are so inspiring! Your posts keep me on the right track...always looking for the good even in the not so good situations!

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  4. Hugs and Prayers going out to you and Tripp! Thank you for sharing with us.

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  5. Courtney, YOU ARE AMAZING!!! So glad yall made it through Christmas. You are so blessed in so many ways. Other mothers out there wouldn't be able to handle half of what you do for that sweet baby Tripp. I would just LOVE to wrap baby Tripp (and you) in my arms and just squeeze tight! I want to kiss those precious cheeks! Girl, I think and pray for yall every single day! Keep your head held high and keep giving that little angel your love!!!

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  6. Thanks so much for the update. So nice to hear how things are, I think of yall all the time. Sending all my love & as always PRAYING! Casi

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  7. It's so good to see an update from you Courtney and I'm glad you found someone to be in your lives. Tripp is an amazing little guy and so lucky to have you as his Mama. No matter how sick he is, he's always such a beautiful baby.

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  8. Courtney you are an awesome mother and strong woman, I keep you and Tripp in my thoughts constantly. Though I don't know you I love you guys dearly and wish for a day when EB is no more. Keep your head up hun we are all here for you.

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  9. I am sending my love to sweet Tripp! I think about him and pray for him daily!

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  10. You are amazing and your son is amazing. I can't say it enough. I pray for you all fervently every day. God IS with Tripp and IS helping him bear with the pain. Tripp is the most amazing, strongest boy I have ever "met"(internet or in person) AND YOU are the most amazing mother.

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  11. I always get teary eyed when I read your posts. You are so amazing Courtney! You and Tripp have so much strength! It's amazing how He works in mysterious ways, bringing people back into our lives :) I think of Tripp everyday. He is so beautiful! xx

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  12. I say a special prayer for yall each night. You are a very special person and he is such a precious angle!! May God bless and keep you and bring you more happiness and peace.

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  13. You are such an amazing Mom. Your strength and love for your son, and your ability to stay so positive is a constant encouragement for me. I know you think Tripp is the angel here, but I think you might just be one as well.

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  14. God Bless you and your precious little man.... You are both in my thoughts, quite often.... May God grant little Tripp (and you) relief from his pain and suffering... You are both so loved, by so many... Our prayers are always with you...

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  15. Tripp is such a beautiful and strong little boy. I think of you both often and pray for his comfort and peace daily. I'm still praying for a miracle, in any shape or form.
    God bless you Courtney for staying strong through this heart-wrenching ordeal Tripp calls life. You are an amazing momma!

    As always, sending you lots of love!
    Mary and Baby Jackson

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  16. Sending many Prayers and Love to you and gorgeous little Tripp!!

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  17. We prayed for Tripp today in homeschool in Chattanooga, Tn.
    Oh, how I pray Jesus comes back for all us today. To get us out of this broken world.
    Tripp is a SUPERNOVA, and so are you Courtney. Shining the light of Jesus into the dark world.
    Much love and prayers-
    Stephanie

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  18. God bless you and your sweet baby. Only you and our Heavenly Father know the heartache you feel. Don't let negative comments people make get to you. I believe Tripp picked you to be him momma because he knew you would always do what was best for him and love him unconditionally. You inspire me.

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  19. You and Tripp are in my thoughts and prayers all the time, Courtney. Bless that baby boy and may he have peace, as you say, in any form.

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  20. I could not wait to hear all about Tripp's Christmas this year. I thought about your family constantly this year. Just the fact that he is here to celebrate in the birth of Jesus (even if its in his own special way) is a miracle. I feel so blessed that I was introduced to Tripp in 2011. I feel that he has forever changed ME for the better, and I will always be so grateful for that little boy and for you for what you have inspired me to be! Thanks for sharing him so graciously with the world, Courtney. May God bless Tripp with all the peace and love he deserves, and maybe even that special miracle we are all praying so hard for! God bless you both in 2012!

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  21. Courtney, I'm so glad to read that you have found an incredible man to love and support you and Tripp the way you deserve. It pains my heart to read of the struggles you have on a daily basis, your precious little guy has willpower and strength that is *absolutely* superhuman. It's inspiring, challenging, and so many other things. He's just incredible, as are you.

    I know my prayers are but a drop in the bucket of people coming together on his, and your, behalf, but please know no matter what I'm doing - you guys are on my heart. MY life continues on here in Minnesota, because it has to...but I still am praying and thinking and wishing there was more I can do. I know God hears our prayers. His plan may not be known yet, but He has SUCH plans for Tripp.

    Immensely blessed by you! <3
    Jen
    (the one from Minnesota, hello!!) :)

    PS!!!!! I love the pictures, of course!! (I'm sure Brit is going nuts with the camera!!) <3

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  22. Oh Courtney, there are so many things to say and yet nothing that can be said right now. Tripp is always in our prayers as are you. Kaelin is always asking about Tripp and prays each night for you both. God love you Courtney. You are doing a great job.
    Dawn Thomas

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  23. Thoughts and prayers are with you always. I've been so anxious to see how Tripp was doing...so glad to see how peaceful he looks (as can be) in your latest pics. So glad that you have a strong rock to rely on in Stephen - you cannot be expected to hold everything up yourself. I know you have your mom and family, but especially after the rough divorce like you said, it's a blessing to have to love and support that YOU need. You aren't alone...we're all there with you in spirit, hoping that your little one has peace and comfort, and that you and Tripp's other caregivers find the necessary strength to get through every day. With great respect, Donna

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  24. You and Tripp are always in our prayers. Both of you have touched us in ways I never thought possible. I am happy that you have found love, that is so wonderful. We continue to pray for peace and comfort to fill your home. We also pray for relief for baby Tripp. Thank you for being so transparent and holding onto your faith even when it is hard. It matters. Much love, Nicole and Kenny

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  25. I was reading your latest blog with the 3 year old my grandmother babysits. He saw the pictures of Tripp and kept asking what happened. I explained that he has a lot of owies. He looked at me and said "I give him a kiss." and kissed the computer. "Now we go see him and hug him. No more owies." So give Tripp a hug and kiss from a sweet 3 year old. And thank you for taking such amazing care of your special boy.

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  26. Your family and Tripp are continuously in our prayers!! I have never commented but I do read every single post and subscribe to your blog. You are an amazing woman and mother don't ever think different. I cant imagine how you feel and the emotions you endure. i had my first child this past Feb. and i never thought i could love another human being so much and have so many emotions. I cry with ever post and just always know every mom out there is behind you. I pray he is comfortable soon. have a good day. Oh and last, Stephen you are an amazing man and i dont even know you to stand behind her in the time of need like this is remarkable!!

    Amanda

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  27. Thank you so much for the update. Praying for Tripp and for his wonderful caretakers.

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  28. Courtney, I'm so happy that you have such a wonderful man in your life. He truly must be amazing. Still sending prayers your way for comfort and peace for all of you. Glad to hear your sister is visiting. I know you must be so overjoyed! Enjoy your visit! XOXOXO
    Blanche Melvin

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  29. Courtney, I have not enough words to comfort you or little Tripp. But pls, know we are with you guys, reunited in hearts. We have never met, but I can imagine, at least, what you're going through as a mum.
    Keep strong!!!! Tripp and you are angels on this earth.
    with much much love for both.
    Paula from Argentina xx

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  30. You & that little boy are just so amazing! **hugs, love, & prayers**

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  31. Hey :) Even though Im just a 15 year old girl from Finland, but seriously, I'm thinking often of you and little Tripp. Though I'm so young, I've gone through not-so-good things BUT I'm pretty happy of those things I have and I you make me to stop thinking about things i DON'T have. I'm so sad for Tripp, he's such a cute little boy! It's not fair at all that he has to keep fighting for that kinda pain. And I'm very jealous 'cause you have so much strength to compete this all. I wish you all the best!!

    Ps. I'm very sorry of my (maybe) bad English..

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  32. I think of you and Tripp often and always look forward to your posts. Your son is such a trooper & so are you! Please know you are all in my prayers.

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  33. Courtney you are doing such an amazing job loving and caring for your son Tripp. I know these days are so rough on all of you and I thank God you have comfort in that poem that you shared last post. Here are a few Bible verses That I hope will bring you comfort.
    Genesis 1:1-2
    In the beginning God created the heavens and the earth. Now the earth was formless and empty, darkness was over the surface of the deep, and the Spirit of God was hovering over the waters.

    2 Chronicals 16:9
    For the eyes of the LORD move to and fro throughout the earth that He may strongly support those whose heart is completely His.

    God is hovering and His eyes are roaming throughout the earth. He knows how Tripp is and how much pain he is in. I believe God is with Tripp all of the time, comforting, soothing and carrying him. Tripp belongs completely to God.

    Praying and praying for Tripp often.
    <><

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  34. Ohh Tripp you amazing little boy you.. My heart aches thinking of the pain you are going through I wish I could take it away somehow. I wish everyone who knew about your story could agree to take a part of your pain so that you would be pain free and do all the things a toddler would do. I have a little boy Aidan who is about your age and looking at him and seeing how active he is and you haven't sat up in 3 months breaks my heart. You deserve to be doing it all. I Love you Tripp I may not be near you since I live here in Jersey but you are constantly in my thoughts.

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  35. so glad you have found someone that loves you and Tripp. Love the latest pictures of the adorable little guy. My heart aches for you and Tripp. Hang in there. you're a great mom!

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  36. Thanks so much for the update. You and Tripp have been on my mind and in my prayers. Despite his failing condition he looks pretty good! You take such amazingly great care of your little man. Your strength and his strength must be heaven sent. Otherwise I don't see how you could do it. I hope this is a blessed year for all your family...knowing that blessings come in all shapes and sizes and circumstances. Love to all, Jan

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  37. Courtney,

    Thank you so much for the update. You and your little man are on my mind everyday. He is amazing and for sure super human!! I will continue to pray for you both :)

    Kelly Cunningham
    Sacramento, CA

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  38. Your son is absolutely precious...what an angel. Let's have faith that God is taking care of Tripp right along side you, and that He will take him home when it's time.

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  39. Still wishing you all the best. It sounds like you've got an amazing support system there and I'm so happy that you do. Tripp is looking a little better in the pictures you posted, I hope he's feeling a little better to go along with that. Love and prayer for you and baby boy.

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  40. Hi, I've never commented before but I have been following your blog for about 6 months now (I found you through another blog). I'm a child life specialist (which means I help kids cope during hospitalization and stressful/painful situations). I just wanted to tell you what an AMAZING job you are doing as Tripp's mom. You care for him so well and you really have done everything you possibly can to help Tripp be comfortable and feel loved. I wanted to comment on Tripp's changing/bath anxiety. You said that you have tried talking to him about when it is "time" and when it is "not time" and that it doesn't seem to be working (btw I think it is awesome that you have been doing this!!). One thing that I have done with kids in the hospital who are not cognitively able to understand what I am saying is to play a certain song a couple of minutes before a procedure, keep it playing during the procedure, and then stop it when it's done. Only use that song for changing times. Tripp will most likely come to dread the song, but it may give him a sense of relief after the song is over because he will know that the procedure is done. This has been an effective preparation tool for some kids I've worked with, and I just wanted to pass it onto you to try (if you want). I pray for you and Tripp often and you are always in my thoughts. And despite Tripp's pain, I think he is looking really good! His face skin looks very soft and not too painful at this time, so I hope that is the case. You are an amazingly strong woman and mother and I don't think I could ever say enough wonderful things about you. Tripp is SO lucky to have you as his mom.
    Prayers with you always,
    Megan

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  41. Merry Christmas and Happy New Year! Wishing you and you family lots of happiness and love. Sending prayers to you also.

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  42. Amazing child, Amazing mother, Amazing grandmother...Amazing grace.
    I am in awe of all three of you.

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  43. There's something about those Stephens, for sure - my husband is a Stephen. Isn't it wonderful when you finally feel like you've won the love lottery?!

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  44. Awe, bless you and your sweet boy. The skin on his face looks so good in the above pictures! I pray his little bottom heals up so he can be more comfortable. My youngest had a terrible rash for 2 months on her bottom( any skin that was left was blistered and awful), a pediatric dermatologist finally suggested cleaning her bottom with mineral oil, and then completely slathering her bottom with ihle's paste; it finally healed. I know you are probably inundated with suggestions. Just thought maybe mineral oil might be more soothing than water for cleaning that raw bum? Praying for a miracle.

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  45. You and Tripp are always in my prayers and in my thoughts.....

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  46. Courtney, with all the pain that Tripp does endure, he is a little super human. My thoughts and prayers are with you guys. Stephen sounds wonderful. I hope things work out for you two and you stay happy, because you deserve love and to be loved (other than us that is). Keep strong,and WE LOVE YOU.

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  47. I cannot find the right words to say to try to convey how incredibly strong you are. What a gorgeous little boy you have, and what a momma you are! Tripp is such a special soul, and he is so lucky to have you as his momma. You are fantastic! I will be thinking of you and Tripp and sending good thoughts your way always. <3

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  48. Dearest Courtney: Thank you so much for the update. I have been thinking about you guys so much during the holidays and hoping everything was okay with my favorite little boy. Sorry that Tripp is still so upset about baths and getting his diaper changed. He is so amazing. I am in awe of your entire family.
    So happy that you have found someone worthy of your love. He must be very, very special. He is the lucky one to have you and Tripp in his life now.
    Please take care my friend and give your parents my best. Give Tripp a big hug for me. Love you guys. Love and Peace Leah and Tabby's Nana

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  49. Thanks so much for the update Courtney. You are in my thoughts and prayers every day, and I have been wondering how you are both doing. I'm glad you are going to have your sister and her husband in town- there is nothing like getting time with my sister. You and Tripp are both so strong, and two amazing people. You are right that God is with Tripp and you each day, and he will not leave either of you through any of it. I will pray for peace and comfort for you both, and for his anxiety to be quieted. Your little boy is so beautiful, and amazing. Thank you for sharing him with us.

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  50. Thank you for the update. I have been thinking of you and Tripp since the last post and wanted to know how he is doing. The skin on his face looks really good! I hope that it provides some comfort to him since it looks like it is healing up nicely. I know you said his bottom is so raw. It is too bad there is nothing you can do for that area. Your family continues to amaze and inspire me. Thinking of you and Tripp always. From St. Louis, MO.

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  51. I think about Tripp everyday. I have a dreamcatcher on my rear-view mirror with Tripp's picture in the middle of it. He is a fighter.

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  52. You and Tripp and your family are in my daily prayers. I have bragged to so many people how wonderful you are. God will decide when it is time for Tripp to join him. My husband passed a couple of months ago---had a very rare auto-immune disease, diagnosed 1 week before he passed. About a month after he passed, he visited my youngest daughter in a dream. She was in a very white bright room with tables and chairs when a door opened and her father, dressed in a white jumpsuit and a huge smile on his face, came thru a door. She asked him how the food was and he said it was excellent. She asked him if he was happy and he said he was very happy. This was so reassuring to me----I know heaven is real and it is absolutely wonderful. The same daughter had a visit from her grandfather 2 days before she got married and he reassured her that he is with her all of the time. She had been very concerned that he would not be present when she got married. I keep praying for Tripp to be comfortable--I know he feels loved. Bless you as you go thru each day. You all are in so many prayers and thoughts of lots of people.

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  53. Ditto what Melissa said. I love Tripp, you and your wonderful mother! You all are truly, unbelievably amazing!
    And I'm so happy for you and your new guy!

    Kathy (a grandmother)

    I've tried to post on here so many times. Somehow it goes away when I go to Google and they want me to give them my cell phone number???

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  54. Love those photos! His face looks great! Too bad his little bum can't look the same way. :( I'm so glad that you have a man in your life to help you through this. Ever since your divorce, I've been worried about that for you because I know that mentally, I could have never made it without Brian. Love to you all (and your wonderful parents!)! Love, Jenn

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  55. Thanks for the update. I'm always looking for one and praying for you all. We call our son 'Bubba' too. He turned 2 in November. I wish for peace and less pain for your Bubba.

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  56. still always praying for your little man! May the LORD be glorified in Tripp's life and yours!

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  57. Praying for little Tripp who I have come to love from afar. Thinking and praying for the both of you!!

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  58. Oh my heart is breaking for you. May God bless you and your family. Prayers sent your way.

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  59. Praying for you all. You are such a wonderful mom to such a special little boy. It is so heartbreaking to hear about his pain and I just can't imagine how hard it is on you. God has such a special plan for Tripp. What an amazing boy.

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  60. Sweet, sweet Tripp you have taught me more than I can express. When I even begin to complain about anything the Lord brings you to mind. How dare I complain when you are so brave and strong under such circumstance that I can not fathom. You are a real hero little man. I look forward to meeting you one day in glory so I can thank you in person.

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  61. You are an amazing mother. I pray for you and your precious son. He is such an inspiration to everyone.

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  62. You are an amazing mother. I pray for you and your precious son. He is such an inspiration to everyone.

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  63. Thinking of you two often. You are both such an inspiration. Tripp will forever have a place in my heart and you have made me a better parent and person.

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  64. Praying for peace for all of you -
    And happy that you have found your Stephen -
    Take good care,
    Heather from New Hampshire

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  65. Thank you for the precious update~ I have been worrying about you and Tripp. Enjoy Brit, there is nothing like a sister! Hugs to you, Tripp and the rest of your loving family!

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  66. Courtney, love and prayers to you and your gorgeous son. The picture of Tripp holding Elmo is precious. He is precious.

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  67. Thank you so very much for taking time to update for I wonder how you guys are doing every single day. My continued thoughts and prayers to you and Tripp...

    ~Erica

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  68. My heart breaks for it all but I'm so happy you have found some happiness during this rough time!! You deserve it for your selfless attention to send for Tripp.

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  69. So happy for you that you're able to find some joy in the holiday this year. My daughter and I continue to pray for you all every night. Sending extra prayers and love to Tripp so he may be less anxious.

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  70. Courtney, I pray every day for a miracle for Tripp and a cure for EB...but I also pray for God to continue to send little blessings to you and Tripp each day. Blessings of strength, comfort, reassurance, and love from the many human angels He sends to you and Tripp. You have such a cross to bear in watching Tripp suffer. You are so strong in your faith. May God continue to give you His gifts of wisdom and knowledge to help you keep Tripp as pain free and at peace as possible. Thank you for your courage in sharing so much of your life with all of us. I love each new update, esp. the beautiful pics of sweet little man. Much love to you both.

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  71. Thank you so much for updating! I know your hands r full! My family thinks and prays for u all daily! I'm so happy u have a strong and sweet guy in your life. I hope u can feel how surrounded by love u r!!
    Tripp looks so sweet in his pictures. Love that Elmo is always close by :)

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  72. Merry Christmas night! I hope you all have an amazing visit. I have been following you for a long time but never can find the words to say even hi. Well tonight I will grow a pair and say hello. MY name is Jaclynn and I have a 14 month old name Leeland Dean. I play Tripps videos for Leeland and he dances with Elmo and Tripp. You are in our thoughts every day and we hope nothing but the best for your whole family.

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  73. Praying everyday for Tripp and your family. May God bear his burden of pain and give him peace. He's a true angel and so handsome!

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  74. Dear Courtney,
    Thank you for the update- I think about your family every day. You are an amazing mom and I will pray for peace for both you and Tripp. He is such a sweet boy- his face is just beautiful. Sending hugs and prayers every day.

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  75. I have visited Your blog every day to see if there are some news about Tripp and today was the lucky day:) I am thinking about Tripp every single day.
    Tripp looks so much better on the pictures and I wish his little butt becomes also better soon.
    Always when I want to complain about something or someone else complains then I think of Tripp and tell others about him. I can not stand any complaining anymore.
    Hugs and kisses from Estonia

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  76. Hi there, I have been following your blog for months. I am just amazed by Tripp and your amazing selfless love for him. I have a question about his dressing changes though. I'm a nurse in a busy ER, sometimes we give kids Versed before a procedure, is this a drug that you have tried with Tripp? I wonder if the amnesic effects would be at all helpful to him with his anxiety level.

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  77. Hello little Tripp, you are such a little cutie and a brave little man. Courtney you are a amazing person and a wonderful mother. I see way to many mothers who don't care for their children and it truly pains me. I'm a mother of 7 kids, its a his mine and ours thing. :-).. My 11 yr old has MRSA, wich was passed on to me. She allso has hearing aids and times get tuff but we continue on. I feel i'm blessed to have my little ones. I wish more people could be as strong as you and God put Tripp in just the right hands. Kisses to Tripp and many prayers. I don't know what you are going through or your family, I couldn't even imagine. Keep your head up girl, your are truly amazing.

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  78. Courtney,
    It breaks my heart to read your post, but I hear the hope for the future in your words and it is endearing. I think of you & Tripp every single day. My youngest child is about the same age as Tripp. I think of the two of you and all of your struggles I am so happy that God has provided for you a soft place to land. I look at Tripp and despite everything he is absolutely beautiful you can see the radience of God in his face, breath taking. Praying that God will provide peace, comfort and resolution for Tripp & your family this year.

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  79. I have to say, that the pictures you posted at the bottom of the screen, Tripp's little cheeks look SO clear and sore-free! Small miracles, I know:) Still praying for you guys in Florida!

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  80. Tripp is definitely strong person, stronger than anyone I know. He's changed my life & so have you, Courtney. You've taught me so much and I can only hope one day when & if God blesses my husband and I with a child that I'm half of the mother you are. You're amazing!
    As for Stephen, I couldn't be happier for you. God does send strength in the time of need. So happy for you & for Tripp. He definitely needs that man figure! :) Keep us updated. Sending my open arms & pouring love your way! Xo

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  81. Every single post you write, amazes me. You have got to be one of the strongest women in the world! Tripp is so handsome, and is so lucky to have you in his corner! Praying for you and Tripp always!

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  82. SO happy to hear you have found a wonderful guy!!! You, Tripp and the rest of your family is in my thoughts and prayers - Kelley

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  83. May the good lord bless and keep you all! I am praying for peace and an end to Tripp's pain.

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  84. I am so amazed by your little boy, his strength, and also amazed by you,by your endurance. You are an inspiration. Prayers for peace.

    Blessings, Grace

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  85. I have been following you for awhile. You are an amazing mother and woman of God. I see Gods love flow through you to your son. Our family prays for Tripp every night (even th 20 month old).

    May God Bless you and your whole family.
    The Socha clan

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  86. My heart breaks for you and Tripp. You are such a strong woman and mama! I am so glad you know what real happiness is with Stephen. I am sure he feels the same about you! May God continue to bless you. You are always in my prayers.

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  87. Dearest Courtney,
    My heart goes out to you and to your beautiful son. A friend of mine's daughter had EB and she used to try and do all the painful things (diaper changes, dressing changes etc) in one room so that her daughter knew that if she was in any other room she was relatively "safe" from having something painful happen to her. Maybe this is something you could try with your son? I realize he can no longer see, but perhaps he can be sensitized some other way? Perhaps a scent or sound so that his anxiety levels aren't always so high? Much love and prayers to you are you and your son go through this.. Peace.

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  88. Sending you and Tripp lots and lots of LOVE =) always-

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  89. I have never posted before, but have been a follower for some time now. You are an amazing mother! And Tripp is an amazing Child of God! You have a beautiful family and I think about you all and pray for you often.

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  90. Tripp is a beautiful, strong, and amazing baby/person/superhero. I am in awe of him and of you. You both encourage me to be a better person, to love what is in front of me, especially when I am stupid enough to think that any of it sucks in the least. When I read your blogs, I can feel my heart and soul opening up and I thank you for that.

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  91. You don't know me, but since I've stumbled on your blog my heart and prayers have been with you. You're an amazing mama with an amazing little boy!

    Amanda

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  92. I've just recently discovered your blog, and his story has made an impact on me... He is so strong, and so are you. We will keep Tripp (and you) in our thoughts.

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  93. I came accross with your blog, through babycenter.com, someone there was asking for prayers for Tripp a few months ago. I have never posted before eventhough I checked your blog every other day, expecting a miracle. I have posted about Tripp on my Facebook. I somehow, like many other people feel like he is part of my life. I have no word to express how my heart shrinks and aches when I read how he is not doing well. Tears are rolling down my cheeks as I type this. I have a 22 month old that has developmental delays and has had a year full of tests, MRIs, EEG's and endless visits to the Primary Children's hospital, I have felt that we've had a rough year, but when i am about to lose it, I think of you, and somehow that gives me strength. I have no right to complaint, about going from specialist to specialist, when you are going through this. You are such an amazing woman, and I'm sure Tripp chose you from Heaven, this was meant to be, why or what's the purpose? I don't know.... but it is amazing to know that there's people in Russia praying for Tripp. You are so special to be the one caring for this Angel. I know the heavens are watching over you, and like you said God is with him and helps him through. Thanks so much for sharing your life with us, for opening your heart, and for reminding me that there is a lovely Heavenly Father that watches over us. May you always find the support, love and strength to get you by, day by day. My heart goes out to you and Tripp. We pray for you every day.

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  94. Praying so hard for you and Tripp! I hope you have a wonderful time with your family. God bless you all.

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  95. Your family is always on my mind and I wish you only the very best. You have a beautiful son. Thank you, Tripp for helping me be a better Mommy to my two daughters. You have shown me over & over & over again what is REALLY important in my life. For that, I will always be grateful.

    Happy New Year!

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  96. I know you get tons of comments saying just what I'm going to say BUT...I've been reading your blog for a while and have never commented but you, your family, and sweet Tripp are always in my prayers. I think of you and Trip often now that I have a little one. You are such an inspiration and I admire your strength and grace during this hard time. Tripp is just adorable and I pray for him to find comfort and peace.

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  97. I have been praying for you Courtney, even though I had no idea about your situation with your ex husband, I am so happy that you have found someone to love you and Tripp and to be there the way you need. I pray for Tripp every night. He has a special place in my heart - the two of you both do. He is always in my prayers.

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  98. The Lord has put Tripp (and you) in my heart and mind and prayers. With you, I trust and rejoice that these words are true:

    Charity...bears all things, believes all things, hopes all things, endures all things.
    Charity never falls away: whether prophecies shall be made void, or tongues shall cease, or knowledge shall be destroyed.
    For we know in part, and we prophesy in part.
    But when that which is perfect is come, that which is in part shall be done away...
    We see now through a glass in a dark manner; but then face to face. Now I know in part; but then I shall know even as I am known" (from 1 Corinthians 13)

    Longfellow wrote in his 'Psalm of Life',

    Tell me not, in mournful numbers,
    Life is but an empty dream!--
    For the soul is dead that slumbers,
    And things are not what they seem.

    Life is real! Life is earnest!
    And the grave is not its goal;
    Dust thou art, to dust returnest,
    Was not spoken of the soul.

    Not enjoyment, and not sorrow,
    Is our destined end or way;
    But to act, that each tomorrow
    Find us farther than today.

    Art is long, and Time is fleeting,
    And our hearts, though stout and brave,
    Still, like muffled drums, are beating
    Funeral marches to the grave.

    In the world's broad field of battle,
    In the bivouac of Life,
    Be not like dumb, driven cattle!
    Be a hero in the strife!

    Trust no Future, howe'er pleasant!
    Let the dead Past bury its dead!
    Act,--act in the living Present!
    Heart within, and God o'erhead!

    Lives of great men (and little boys) all remind us
    We can make our lives sublime,
    And, departing, leave behind us
    Footprints on the sands of time;

    Footprints, that perhaps another,
    Sailing o'er life's solemn main,
    A forlorn and shipwrecked brother,
    Seeing, shall take heart again.

    Let us, then, be up and doing,
    With a heart for any fate;
    Still achieving, still pursuing,
    Learn to labor and to wait.

    Keep hoping and loving. God is faithful. He does not disappoint. Even though I haven't met him in person, Tripp has made me laugh, made me cry, given me courage to face my own fears and difficulties, and blessed me with his joy and love. He is a precious, funny, musical little boy. Keep hoping and walking each step with continued faith, and know that you are the perfect mama for Tripp. Thank you for sharing your journey...consider me a friend walking alongside you in spirit.
    God bless you and keep you.

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  99. we think about you EVERY day. See elmo at target and sigh, "OH God bless Tripp! God help Tripp. PEACE!"

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  100. I'm so happy to have found your blog, thank you so much for taking the time to share darling little Trip with the world. The video's of him "riding" grandpa's horse and drumming along to Elmo were fabulous! His drumming abilities are amazing, being able to completely stick to the beat is unheard of in such a tiny tot. I hope that he's feeling a bit better and up and drumming a little more for you. His smile turned me entire day around, thank you.
    Hats off to you for your incredible poise in dealing with the incredibly ignorant comments. Your ability to point out the complete lack of sense, let alone common sense, in their comments in a direct and non-emotional manner is impressive. It's unbelievable to me that people are unable to see that of course your seeking attention, that attention for EB is the 2nd most important thing in your life and that B. you get to choose, or should choose to end his life, simply ignorant.

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  101. Everytime I read your post and see new pictures of Tripp I get tears in my eyes; tears of sadness and amazement.

    It is so hard to see a child suffering and lacking the fullness of health. It is hard to read about a mother desiring so much good for her child. It is hard to think how much you are suffering as a mother -- all the hopes, dreams and all the difficulties.

    At the same time, you and Tripp give me hope because if both of you can endure so much, I too can endure the difficulties of life. I wish I had some of your strength.

    Seeing Tripp also makes it easy to know what is important in life. He looks good! He is in my prayers.

    Benjamin

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  102. Praying for that sweet angel and also for you (as always). He's been on my mind a lot this week. Praying that he will have relief from his pain and anxiety - I cannot even begin to imagine it. Tripp is SO brave!

    And you are brave, Courtney! May God continue to give you His strength and wisdom.

    Love from TX,
    Laura

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  103. Prayers and love to you and Tripp. He is so precious.

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  104. I think of you and Tripp every day and I always pray for his peace. I admire your strength so very much.

    God bless you and your dear boy.

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  105. Tripp is amazing. YOU as his mom is amazing. God bless you. My prayers are for you both...

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  106. My new year promises: I keep praying for Tripp, I keep telling about EB to everyone, I will donate money for the research, I will not close my eyes and think that it will go away, because it wont. I promise to do everything I can to help.
    Im proud to say that I have keep my promises,every single one of them. And I will not stop,I will not close my eyes.
    More and more prayers for Tripp!

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  107. Once again, I LOVE that he is holding onto an elmo toy and it amazes me how he is with music!! I am sure you've thought of and tried everything possible, but is there any way to somehow use something with lavender to help calm him? I know he may not be able to smell and I know you have to be careful with germs and I know it could be annoying to get suggestions as you obviously rack your brain as it is for solutions. and if medicine doesn't do it, plants in the room may not, but it is just a thought. Lavender is just awesome when you crush up the buds or put a dab of the essential oil form of it somewhere. I'm curious if stress and anxiety make EB worse?? I was just watching a show tonight about stree and excema. I know this is way different...I might try looking it up though just because I'm curious...I always read your blog late at night. So I get a little rambly. Seeing Tripp brightens my day though. He looks really good, so all of the bathing you have to go through is worth it. I know you know this already, but I'm sure hearing it give you a little extra encouragement. And I'm so happy for you that you have a good, mature, happy relationship with a new man. That is so good.

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  108. How my heart breaks to hear such sadness snd pain you both endure, not just Tripp, your job as a mum must give you the same anxieties and pain that Tripp goes through every day. Bless you both - and the strong rock standing by your side.

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  109. I don't think I hae ever commented on here before but I have been reading for a long time. I remeber Tripps first birthday so it was before then. I just don't know what I could say that wouldn't sound trite or pathetic. You are amazing and your darling litte boy is an inspiration. I often come and read your blog if I have had a bad day. Every day I have no matter how bad, is a walk in the park compared to what Tripp has to go through. I rarely come to your blog and don't shed a tear. I always say a prayer. And come away feeling humble.
    You are a fantastic mummy. God bless you all.

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  110. I cannot undo the damage done by thoughtlessness, but I hope my words can help you. Your son's struggles and the grace that you describe in him, along with your own strength and dedication, are inspiring. I have always loved the potential in people, but your words and the courage you show by sharing these stories expand my understanding of human capacity. You are a most precious and valuable blessing to your son, as he is to you, and both of you are a blessing to this world.

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  111. God bless you all.

    I know that God keep you both.

    Hugs from Finland.

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  112. This is the first blog I've ever read from you and I'm in tears. Your strength and positive outlook are amazing - I think you're a perfect example of God matching the perfect children with the perfect mommy <3 God bless you both.

    http://www.krissyj0606.blogspot.com/

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  113. Dear Courtney,
    Have you ever heard of homeopathic remedies? There is a very good one called Arnica, that helps with healing wounds. Another one, Aconite, is for fear and anxiety. These remedies have no bad side effects, are safe for babies, and I've never heard of any problems when taking them with other medications. I was raised on them, and have used them with my 3 children.
    I've followed your story since this past summer, and like so many others, you and Tripp have taken a very special place in my heart. My children and I pray for you all often. Sending huge prayers for comfort, health, and strength you your entire family. Sincerely, Emily

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  114. As usual I'm in tears after reading your post. My family and friends pray for peace for your family every single night. God bless your sweet boy. You're an amazing mother, you and Tripp are meant to be. Love you

    -Melissa Pline

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  115. Hi Courtney! Love from Socal! Sorry, I haven't been on my dashboard till tonight; we're bizzzy getting ready for Wings of Hope on Wednesday! Given the circumstances, it really does sound like you all had a really good Christmas. I am so happy to hear the happiness in your words. I know it's not all happy, but that you do the work to find it, focus on it, share it, and be grateful for it... well, that's really the game, isn't it? I'm so inspired by you. Thanks for the update; we were really missing you guys. Your updates connect us, and we LOVE that.

    Much much love to you guys,

    Tim and Angelique

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  116. Courtney,

    I was so happy to see the update! I always look forward to new posts.

    Although I'm not in the same situation you are, I too have found myself getting stuck in the "what my child could be/should be doing" woes, as you mentioned. I know first hand how easy it is to slip into that. It's even easy for me to (which I fully admit to doing sometimes) compare her to other kids in a similar circumstance (in my case, other kiddos with down syndrome) and say to myself --

    She should be doing _______ because they are.
    Or they can do _____, why can't she?

    But again, I only bring sadness and doubt to a place it doesn't belong. If Chloe doesn't worry that she should be doing anything other than what she's doing at age 7, why should I? Right?

    You're so right, Courtney -- all that matters is LOVE and Tripp is surrounded with loads of it! :) Near and far -- people send him love and prayers, and I know he feels it. Especially his Mama's love as she rocks him every day. :) And I know God sent Stephen to you and Tripp as well. I am so happy that you found one another again! Now it's time to run off to Maui! ;)

    And just how the lines in the "Brave Little Soul" poem bring you comfort (which I'm so glad they do!!) -- I often times like to let my mind slip into the mentality that my child knows more about the world than the rest of us because she made a pact with God in this life to have special needs. I like to sit and hold her in my arms and daydream of her having conversations with God before coming into this life. And in those conversations, I imagine God telling her all the answers to the world's problems and all the secrets to the questions we ponder. I like to believe that God said to her, "See how they worry about this and that? It's far easier and less complex than they think."

    Perhaps it's like that for Tripp too. Yes, he's in pain. Yes, his situation isn't ideal. But do you think when all is said and done and he returns to God's kingdom, he'll look back at his life and be angry that he didn't get open his presents like all the other 2 year olds OR that he'll reflect back with God and say -- I had a really great Mommy, who did everything for me and I never felt so much love?

    I like to think it would be the latter. ;) And I happen to think he'd tell God -- you did a great job helping me pick my Mommy out. She was the best Mommy in the whole entire world! :)

    I'm so thankful I found your blog Courtney. It's been great getting to know you over these past few months and I'm enjoying getting to know your family too!

    I'm sending you LOTS of hugs & prayers, and I'm hoping you are having a great time with your sister and brother in-law!! I'm sure Tripp loves the extra company! :)

    Talk soon! Hope you all have a good week!

    XOXO,
    Katie & Family

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  117. Hi Courtney I'm ten but I still think you and trip are amazing i prayed for him over and over in church I doing jobs around the house so I can donate money to help find the cure what else can I do

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  118. I'm always in tears after reading your post. You are such an amazing mother and your son is wonderful. He is so brave. I pray for him.
    God bless you both!

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  119. Hi Courtney ~

    I just found your blog through Safe Haven. I was up until 3am reading through some of your posts. I must first say ~ I am already in love with your sweet little man :o)

    I also admire you greatly, for so many reasons. You are the mommy of all mommies. I plan on reading your entire blog, but so far, I am in complete awe of all you have been through and continue to go through and how you handle yourself.

    I have to say, I felt so insanely protective of you and Tripp with some of the comments you have been subjected to. I seriously wanted to hunt these people down and punch them in the face (well really, I wanted to do so much more to them, but hey ~ this is a family blog, right? So I'll leave all of my mafia thoughts right where they belong...in my head :o). I too know their comments were out of ignorance and not understanding the situation, but still ~ they disgust me to know end.

    We had to make life and death decisions a few years ago for our daughter and until you are in that predicament...you have NO IDEA what you would do, or WHAT the process truly entails. People think it's so simple to "let someone go." Before, I too thought it was a simple decision, but I cannot ever even fathom coming at someone the way that person did. I am referring to the one comment you included within one of the blog posts. People can be so hateful. It is obvious they are just miserable themselves.

    I am just in disbelief that anyone would ever question your decisions and how you are handling such an extraordinary circumstance. I can't imagine how anyone would say anything, but complete and total praise and admiration!

    My step-father and our daughter were struck by a car and I remember reading the story in the paper a few days later. One person had the nerve to comment, "Was the car ok?" I thought, wow! How tough that person was, hiding behind his/her computer screen, spiting venom. Like you, I wasn't gong to take that, and fired back.

    Thank God for the many good people around the world :O)

    I never venture to understand another person's situation, but there were so many similarities I felt with our situation, and of course so many differences. I plan on reading all the way through for this reason, and because I already care so deeply for your family.

    Thank you for sharing your story. I look forward to going back through and seeing all of the pictures of Tripp. He has captivated my heart. He is one of the most ~ I can't even find the right word to describe what I am feeling right now. Every word seems to pale in comparison to my thoughts. Anyway, he is such a beautiful soul and I just love looking at his little face : ) I also absolutely love the pictures of him with his little Elmo in hand. Those made me cry. Adorable.

    I wish you and Tripp as much peace as possible.

    With love,

    Jen

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  120. Praying for peace for Tripp and strength for you.

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  121. He's looking good, Courtney. His little cheeks are so clear in these pictures :) I'm glad that he played a little bit. I keep you in my daily prayers and on the Prayer page of my blog. Happy New Year to a wonderful mama and strong baby. Hugs & Blessings.

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  122. You both are in my prayers and have been since I found your blog. I'm so glad to know that you have found someone who helps you be happy. God bless you.

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  123. Courtney, I hope you, Tripp and your family enjoyed your sister´s visit. I am always praying for your little man from Colombia.

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  124. Dear Courtney, and dear Tripp. I've been watching some of all your videos here on the blog. I smile and cry at the same time. What a personality he has!!! The video where he rolled his eyes at you, it was so funny.

    Oh God I am so happy that he has YOU for his mother. I am sure that nobody would do your "job" better. It makes me feel good to know that he has you (and your mother of course). I cry when I read here, every single time, but at the same time I know that no boy in this world (not even my own two sons ;) has a better mother than Tripp.

    Every single day I think about you and I try to not let my own "small" problems bother me because compared to this SH*T decease EB, nothing is a problem. Not even my biggest problems are big next to EB and what it does to children.

    I look for your posts every single day. Always wishing for good news.

    Take care and God bless you.
    Love,
    Lisa

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  125. Praying for y'all everyday! I come by the site every. single. day. to get my "Tripp fix".

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  126. Keeping you in my prayers and thoughts. Keep having faith!

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  127. Hi Courtney:

    I read this entry the night it was posted and just re-read it tonight. I truly feel that I know you and Tripp. I think about Tripp all the time and pray that he has peace and somehow he knows all the lives he has touched. I have told many friends/family about your family and some of them have started reading your blog.

    I wanted to send Tripp a Christmas ornament and unfortunately didn't; I am sorry for that. I did send you a card a few months back, but I am guessing you get hundreds of pieces of mail each week.

    Please know that tonight when I head to bed, I will be saying a prayer for Tripp (as always).

    From your friends in Madison, WI.

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  128. I'm really sorry for your son's behalf: (

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  129. I have been reading this blog for some time now... trying to understand, trying to see what this sickness is all about.
    Thank you for telling the story of your sweet little boy. It absolutely tears my heart and hurts me that this young child is suffering so. My little boy is exactly the same age as Tripp (born May 14th 2009), and when I look at him... and I look at Tripp's pictures, it makes me wanna howl "Why does THIS boy suffer that disease that is SO horrible?!"
    I just makes me hug my son just a little bit tighter, kiss him more often and tell him that he is loved, every day. Just like I know Tripp is loved. I hug my boy and think of hugging Tripp. So, a virtual hug for your family, and keep on keeping on.
    May this year bring you some kind of peace.

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  130. Hi, I stumbled onto your blog and am amazed by you, Tripp, and your story. I am a nursing student and while I LOVE pediatrics, it is so difficult to see children in pain. I truly admire you and your spirit, and you are all in my prayers.

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  131. Hi dear wonderful mommy... All my love to u all and TRIPP... He was blessed to be at ur home... thanks .. u all are soo amazing.. God bless u all !!
    Let me pray...
    Cheers dear..
    Priya

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  132. Praying for you momma for peace that only Jesus can give!

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  133. Courtney praying for you and your family to be at peace. I his short little life he has changed and become a part of many other families. You will see your little man some day again and he will be pain free! RIP little Tripp!

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  134. So glad that your sister got to see the little angel before he slept for the last time.

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  135. i am not a person of many words but i have to say u are an amazing woman . God Bless You!

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  136. As my heart breaks for you Courtney, I can't help but think of Tripp smiling, healthy, playing his drum with his pal Elmo in heaven on the lap of God. He has been blessed with the best mom, so proud he must be to have chosen you for his time here like all of us so short but his was spent loved and cared for so deeply. As the lord says our time here is but a blink of an eye compared to the eternity we will spend with him & our loved ones in heaven. It really strikes a chord with me personally the similarities as my son loves his drums and his best buddy Elmo just like your Tripp. I pray for peace for you and your family to get through this difficult time. I'm sure you'll do great as you are an inspiration along with Tripp with your unwavering faith to all of us parents. Thank you for sharing your lives with us. I am a better dad for having stumbled upon your story on my wife's I-Pad, your blog just happened to be up as she fell asleep so upset reading it. God bless and thank you again Courtney & Tripp.

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  137. I never knew about this sickness. You are so strong. Me and my wife have a 1 year old daughter and a 4 year old son and our heart really goes out to you! We pray that Jesus gives you peace and ease your loss. Tripp is an amazing kid. Thank you for sharing this with us. We cried reading your story and seeing Tripp it really made us so sad. We will continue to keep you in our prayers. God Bless you. We truly believe he is with Jesus in His Arms without pain or sickness. Be BLESSED!

    from Malaysia.

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