Monday, March 5, 2012

A very humbling couple of weeks.



To say I long to hold my baby boy in my arms again would be a drastic understatement. 

I apologize for not writing lately.  I really do plan on keeping up this blog... I guess I just needed a little break to gather my thoughts.  Though I'm not sure my thoughts are gathered quite yet, but I'm going to try.  

There has been A LOT going on, so this may end up being a rather long post.  I guess I'll start with how I am doing... except for the fact that I really have no idea how I am doing.  I know I'm keeping really busy.  Going to the gym (sometimes even two-a-days), spending time with my family and with Stephen and his family.  Those are the things that make me happy right now.  I've come to realize that no matter what I say or how I say it, I could NEVER explain to you guys what I'm feeling.  And I know most of you understand that.  

Two years and almost 10 months ago, I gave birth to my first baby- and from that SECOND on,  for 2 years and exactly 8 months, I devoted every waking (and sometimes even non-waking) hour to taking care of him, loving him, and keeping him alive.  And now for almost 2 months, my arms have been empty.  It's the worst feeling that I will ever have- I'm positive of that.  I hate saying that "I miss him," because that just doesn't seem to do it justice.  There are no words that could ever express how much I miss him and how much I want him back in my arms.  As tired and exhausted as I was, I would trade this life that I have now for my life back with him in a heartbeat.  HE was my life.  And I'm having to learn how to live my life without him now- not by choice, but because I know that God's plan is much bigger than the plan that I had.  

And God's plan is still happening... through Tripp and through some pretty incredible, generous and caring people.  First of all, I want to say that I DO receive all of your letters and e-mails.  PLEASE forgive me if I haven't thanked you personally, but it's been pretty impossible for me to keep up.  I'm trying to send out thank you cards, but I'm a little behind and a tad bit overwhelmed.  But I want you all to know how VERY much it means to me when I receive a sweet card in the mail, or when I read your kind words through an e-mail.  I promise that I receive and READ each and EVERY one.  They honestly keep me going.  So thank you all- from the bottom of my heart.  

Two weekends ago, there was a Softball tournament that was put together here in my hometown in honor of Tripp.  It started with an extremely kind family- David and Jessica Thompson- and David's softball team, who wanted to dedicate their entire "season" to Tripp.  They named their team "Tripp's Troops."  They had jerseys made and then began to rally teams to put together a tournament.  Well, it turned out that it was much bigger than they expected.  There ended up being 56 softball teams (Men's teams and co-ed teams) from across the state.  The whole town participated- our local Recreation park and director, Mr. Bill Wheat, donated the park and also worked hard to gather some incredible local bands and activities for the kids. Tripp's Troops also put together a silent auction where people from the town donated things and services to be bid on.  And they also had a huge amount of men and women who volunteered their time to cook, clean, set-up and work this big event!  The turnout was amazing.  It was incredible to see so many people out there in support of Tripp and our families.  I am so humbled that a family that we didn't even know would go out of their way to do such an incredible thing for Tripp, our family, and for EB. 
 I am so grateful for the support. 
Thank you SO much to everyone who was involved. 





AND then, this past weekend, we had another amazing event happen.  
Our local news anchor, and now friend:), Scott Walker, from WDSU Channel 6, decided about 2 months that he was going to not only run the Rock-N-Roll Half Marathon on March 4, but he was going to dedicate it to Tripp.  He decided that while he was training for the half-marathon, he was also going to raise money for DebRa.org in Tripp's honor.  He then created a website- www.runningfortripp.com where he has been tracking the progress and keeping people updated.  

Then, people from the community wanted to get on board as well.  So, local friends decided that they, too, wanted to run for Tripp and also help Scott raise money.  They created t-shirts with "Team Tripp" on them and spread the word through Facebook.   It was so emotional for me to see so many people wearing red and honoring my sweet boy in such an amazing way. 

There was also someone really special who wanted to get in on the action- my Daddy, Tripp's Papa:)  My dad has been running here and there- he runs 5Ks pretty often and for the past 3 years, he has run the Crescent City Classic, which is a 10K.  That's the furthest he had ran- before he decided to also run the half-marathon for Tripp.  He said he would just be happy if he crossed the finish line, but he sure surprised us.  My dad ran the whole 13.1 miles, without stopping.  I was completely choked up when I watched him run through the finish line, smiling and pointing to his "Team Tripp" shirt.  I was so incredibly proud of him.  So was my mom, as tears ran down her face.  And I think even Stephen got choked up a little:)  It was a pretty great experience.

Scott writes about this weekend and his feelings about it HERE, on his blog.  It made me cry this morning.  
I am so proud of him- for taking this on, and for totally ROCKING it. 
I got to meet Scott's amazing wife, Jennifer, and the rest of his family this weekend, as well.  They are such wonderful people. 
I will never forget yesterday and the support we received as long as I live.
Scott first set his goal at $5,000, then $10,000, then 20, then 30... There was over 500 donations online plus the donations given by mail, phone and in person.  
As of today, he has raised a whopping $42,481 for DebRa. 
That is HUGE.  This whole event was HUGE. 
If you missed out on getting to donate to DebRA in this way and towards this event, Scott still has his website up and running for a few more weeks!  Let's help him get to $50,000 before he closes out his site for this year! Visit www.runningfortripp.com for details on how to donate! 
To watch Scott Walker's live interview after the race, click HERE.

I got a little emotional after the race- seeing everyone gathered together with their "Team Tripp" shirts on and meeting people who have followed my blog and who's lives have been touched my my precious little man.  

I want to thank everyone who was involved in this weekend. 
I want to thank Scott Walker for taking this idea and running with it- for helping me to spread awareness about EB in Tripp's honor.  I want to thank Dianne Cothern and everyone who signed up to be a part of "Team Tripp."  I know God was smiling down on all of you yesterday- continuing what Tripp started.  Spreading the love, spreading awareness, and doing something for us that was so much bigger than I can explain.  I know how much it means to me and to all the adults and children who are affected by this horrible disease.  
I am completely humbled by the generosity and big hearts of so many. 
I hope all of you will continue to fight EB with me.  Because Lord knows it's about time that these children and adults receive the long overdue and much needed attention and awareness that they deserve.


Scott Walker at the finish line (with the beanie:)


My Daddy at the finish line! 


My dear friend Amy (from WDSU) interviewing my Dad after the race.














The only thing getting me through the days is knowing (well, believing) that my little boy's soul is in Heaven and he is playing, laughing, and running around- having the time of his life.  Probably using a little stick to "bang" on anything and everything he can to play music.  Maybe humming "Elmo's world" or "Shoo Fly"- and maybe even thinking of me... But most importantly, I believe that his time in Heaven is a blink of an eye compared to the time I have left here on Earth.  So I pray and hope that while he's running around and playing, it will seem like only minutes to him.  And I hope he's having so much fun that when he finally remembers to turn around and look for his Mommy, I'll be right there. 

I kind of think of it like this video below.  This shows his little personality PERFECTLY- always ignoring his Mommy.  I like to think he's up in Heaven ignoring me until I make it there to squeeze him and kiss him like never before. 


The cutest booty shaker EVER. 


Love,
Photobucket

122 comments:

  1. Thinking and praying for you always, Courtney. I know that I know that I know your sweet boy is in Heaven with Jesus.

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  2. courtney i would love to get one of those Jearsey we would love to buy some ... as an eb mom who plays ball

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  3. It was a pleasure to meet you and a HUGE honor to run and raise money for EB in memory of Tripp!!! Your parents were so kind. I hope to be a part of many more events to raise money for EB. Gotta go. My little boy wants to watch Tripp's video's again. :)

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  4. Every part of the blog brought tears to my eyes, as it always does. We love you and your family so much and love hearing from you! So excited about all the people and events that Tripp has inspired. What a special little boy.

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  5. Thanks for the update. Have you read the book Heaven is for Real? I haven't experienced anything close to what you have, but from a child's perspective and someone who has a baby in Heaven, I think you would like it. You are an amazing mama. You and Steve look gorgeous together.

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  6. I love u courtney. May god surround u with love. U inspire me so much. I cry every time I read ur blogs and ur an amazing women. My wish is for u to have peace in ur heart. U are hands down and angel and one hell of a strong women. Tripp was given the best mommy ever and I know he is in heaven doing his thing but at the same time he is always with u no matter where life will take u.

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  7. My thoughts and prayers are always with you, Courtney, and both you and Tripp are never far from my mind. Love and hugs to you <3

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  8. That's so sweet Courtney.... You are truely amazing!! Thanks for keeping us posted with your blog.. It makes me feel as if Tripp is still here by reading your post... You are a strong amazing women and we all love you for that. You never gave up. I will never for get you are Tripp. You touch my heart in so many ways and words can not describe what you go through in a given day. I am glad to hear that you are slowly getting out and doing things. Even if it takes awhile to get back to us with your blogs I completely understand. I am glad to see that you are keepin it up for Tripp. Thank you agin for all you done for him. You taught us all to never ever give up. God bless

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  9. That shake your booty video is the most amazing thing ever! Triipp had some rhythm!!!! I found your blog through Pinterest and you have absolutely changed the way I go about my everyday life. I have a 13 month old girl who is perfectly healthy, strong and beautiful. Through your story, I have learned not to take one day for granted - no matter how exhausting the day might be:) Please keep writing so I can continue to be inspired! God's Blessings.

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  10. I just want to say that I love reading your blog, it helps me get through my lonely days being at home, i've been out of work since July of last year...your words keep me going and my hopes up that anything is possible....Thank you and I would like to know where I can order or buy one of the t-shirts for tripp?

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  11. You are such an amazing mother and a huge inspiration to others and I would just like to say thank you!

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  12. Oh my goodness! Tripp is indeed the cutest booty shaker, lol!
    I love how much Tripp continues to affect the world! So many amazing people coming together because of him. ((HUGS)) to you sweet mama.
    trace

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  13. Love the videos of precious little Tripp!!!!!!!!!! :)

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  14. As a mom I have no words but only tears; of sorrow for your loss and of joy for the legacy of Tripp's life. I will continue to pray for you, your family, and the amazing plan God has for your life.

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  15. Courtney,
    This is a beautiful post!! I love how positive and wonderful and supportive your community has been!! It is so great to see people come together to support!! :) Best wishes and prayers always!!
    -Meesh :)
    P.S. love that shot of your dad!! Def. framer!! :)

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  16. Beautiful post Courtney...think about you and your drummer boy often. This post brought me to tears...
    ...I'm sure he is having fun in heaven and I have no doubt he thinks of his mama.
    My thoughts are with you as you continue down God's path for you. Much love and big hugs!

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  17. Hang in there! Think of you and your sweet little boy often. Love the videos...especially Tripp shaking his booty! How precious!!!! I'm so thankful you have these videos to watch, although I'm thinking it is tough to be able to watch them as even I wanted to reach in the screen and give those cute little cheeks a big kiss!

    He sure knew how to make his way into other's hearts. Hugs Courtney...God couldn't have placed His precious child here on earth to a more loving, patient, and joyful mother. I know you miss your little boy. Will keep you in my prayers.

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  18. I love seeing the videos of Tripp. It brings joy to my heart to see all the love that people have for Tripp and your family. Praying for you and praying for a cure!!!

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  19. You are so inspiring and so is Tripp! I've followed your blog for a long time and my heart is so heavy for you still. So thankful that one day I get to meet Tripp in heaven and you too! What a blessing that will be :) Courtney, you are amazing. Thanks for letting God speak through you in all of this. I love the shirts, wish I could get one somehow! You're a beautiful person inside and out. Thanks for shining!
    Amanda

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  20. He is in Heaven, and he surely thinks of you. You were his angel on earth. Hugs and prayers!

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  21. can I just tell you what a inspiration your family is. how amazing it is that you are sharing Christ's love through it all. Keep it up and know you are loved

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  22. Glad to hear you are okay. it is wonderful and amazing to hear how wonderful people can be. Thanks for sharing how Tripp has influenced people to do amazing things.

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  23. Those events look absolutely amazing. Congrats on the money raised and I hope you make it to your $50,000 goal. I think you had it right the first time when you said you know, and then changed it to believe. I think you know he's in Heaven, healthy and pain free. Carry on, I know it's not easy but you do look happy and you deserve to be.

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  24. SO Glad you posted. I know a lot of us have been waiting to make sure you are doing alright ( as alright as you can be). I KNOW Tripp is running and playing and happy knowing that he has changed SOOOO many people's lives and he will be a major reason and part of finding the cure for EB, and with people like you there will be a cure. I do hope you continue with this blog because I will miss you if you don't. You are admired and loved and you make me a better person! Thanks Courtney!!

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  25. Courtney, thank you for sharing your latest updates. I believe, without a doubt, that time in Heaven is like a blink of an eye. I know your little man is up there having the time of his life- missing you, for sure, but knowing that he will be with you in know time. I know that you will be united someday and wow, what a day that will be. My family and I think of you often and pray for continued peace for you knowing that your little boy is out of pain and forever in the company of the Lord.

    Take Care,
    Tawny Niemann

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  26. Thank you so much for sharing your blog. I read it all the time and I just cannot imagine what your life has been like these past few years. I know you do it not because you have to, you do it because it is what you are meant to do. I know because I have a special needs child myself. I pray everyday for your peace of mind and that Tripp is having the time of his life in Heaven.

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  27. I am so thrilled to read a post from you. I continue to pray for you and to think of your sweet little one. What an impact he has had on this world and the hearts of many! We are blessed that you have shared him with us. May the Lord hold you tightly and carry you forward until you see Tripp again. God Bless, Elizabeth in North Carolina

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  28. Amazing as always! So happy to hear that you are busy and surrounded by people you love and who love you and Tripp. His memory is going to (and has done) amazing things in the world of EB. He had a mission in life, and he completed it. Sometimes I think of all the people I want to meet in heaven one day; your son is high on the list! You look beautiful (as always), and so does that wonderful mama of yours! Your Dad is amazing, and seeing you and Stephen together makes my heart smile. You deserve all of the happiness and love this world has to offer! XOXO

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  29. What a sweet boy you have. You both have touched my life, and I think about both of you often. I can't imagine what you are going through, but as strong as you have been, I know you will make it through, as tough as it may be.

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  30. What a sweet boy you have. You have both touched my life, and I think of both of you often. I can't imagine what you are going through, but I know how strong you have been, and know you will make it through, as tough as it may be.

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  31. you are beautiful INSIDE AND OUT, Courtney, I cant begin to say how inspiring you are, you were chosen to be TRIPPS mother by GODS will and his wisdom, look at Nancy Grace's updates nearly each day there is cruel heartless woman abusing the privilege of being a "MOTHER". It was a total blessing for both you and Tripp when God choose you to be his mother, YOU nailed it with every breathe you took and Tripp was a God sent gift that fought his battle with every breathe in him while showing the WHOLE WORLD new meanings and lessons of life! May you find peace as "WE" the WORLD are praying and supporting you and the knowledge we gained through you and this little hero!.. TRIPP <3

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  32. You are always in our prayers Courtney. I think that big things are happening all around the country to raise awareness for EB, all thanks to Tripp, Bella, Jonah, Anton, Ella... You are so right when you say it is all part of God's plan!

    Much love! Lilia, Chris and Gerry B.

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  33. Another great post! Thank you for keeping up with this blog. Just know that so many people are praying for you to adjust to your new normal. Tripp is up there singing shoo fly and banging on that drum :)

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  34. The video of him ignoring you made me laugh:) and the video of him shaking his booty is just so adorable:) I absolutely loved them--thank you for posting them--although I never met Tripp, I miss him too. It is so beautiful to see how much his life is still continuing to touch others in such a big way & how he has brought so much awareness to this horrible disease. His life is going to help so many other kids & family's deal with this. And your strength & goodness still inspires so many Courtney!! You are still on my heart & in my prayers. I also look forward to giving Tripp a big hig one day & watching him give you lots of kisses & hugs:)

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  35. You are truly an amazing person. I hope that you can find peace and enjoy life until you meet up with Tripp again.
    Heather

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  36. Thank you so much for sharing! I will continue to keep you in my prayers

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  37. I LOVED LOVED your video's!! He is adorable shaking his booty and nodding his head.... ! And boy did he ever ignore you! Precious child!

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  38. You are such an amazing woman. I never had the honor of meeting you or your precious Tripp, but know that your story is with me often. I am truly moved by your strength and courage. I hope as the days pass you find some peace, if only to pass the time till you are with him again. If I could I would give you a giant hug!

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  39. So proud of you and contined faith! :) I miss my Charlie so much too. I know exactly what you mean when you say you hate to say it because it doesn't feel like it does him justice. It has been 8 months tomorrow since my baby boy went to heaven and I am just now getting to where you are in strength.

    Kate
    embracinglifesjourney.blogspot.com

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  40. "But most importantly, I believe that his time in Heaven is a blink of an eye compared to the time I have left here on Earth. So I pray and hope that while he's running around and playing, it will seem like only minutes to him. And I hope he's having so much fun that when he finally remembers to turn around and look for his Mommy, I'll be right there."

    Yes, I believe that too, Courtney. Thanks for the update, it means so much. Still can't hardly believe or imagine your pain - but absolutely still carrying you to God in prayer. (())

    Tripp is so beautiful, Courtney. I think that even though you are seeing some amazing things happening through the kindness and generosity of those around you - you aren't going to know the complete story until you hold him again in heaven. Along with what you *do* get to see from this vantage point - there are certainly some amazing undercurrents happening that one day you will know when the veil has been lifted. "No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him" (I Corinthians 2:9)

    Sending so much love to you and your family and loved ones...

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  41. Thanks for sharing this with us. I have been following your blog for almost 8 months. I was so excited when I read about the Run for Tripp, and how people were donating. It's awesome to know there's still good people among us. I have a 2 year old girl that was just diagnosed with Rett syndrome. When I am having a down day,I read your blog and that's what gets me going.
    You are a great woman, it's amazing all that you have accomplished, and all the hearts that you have touched with your blog. Thanks for your inspiring words!

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  42. I can't help but think that you spent all your time caring for Tripp and being his angel and now it is his turn to be your angel. It will be one fine day when you get to be with your little man again. Sending lots of love to you and your family!

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  43. Courtney I think of you all the time! Thanks so much for the update. I am so glad to see that Tripps EB brothers and sisters will have much hope for the future through his legacy. Before your blog, before Tripp, I had no idea what EB was. Now I know, and I am educated as well.
    Much love you to you, and I pray that you will continue to feel a peace that passes understanding.

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  44. Zach (5yo) got in bed with me about 3 am yesterday. When we woke up he said he had a nightmare, said the devil was trying to kill Tripp in Heaven; but God, without wavering, stopped the devil by allowing a table to fall on Satan, with barely the blink of His eye. I asked him what they looked like, almost afraid to ask what God looks like; he said the devil looked twisted and scary, but Tripp was "normal" with healthy skin; he couldn't really remember what God looked like, but remembered more His demeanor, His posture, His confidence. Wow. I wished I had that dream!

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  45. Courtney, there are no words!! You, Tripp and the rest of your family are in my Prayers. Hang in there!!!

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  46. 'And I hope he's having so much fun that when he finally remembers to turn around and look for his Mommy, I'll be right there.' Courtney, this sentence says it all!! I hope you are right and I hope you hold this sediment in your heart till you do catch him in your open arms! I am thinking about you and praying for you and your family~ much love <3
    Diana

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  47. Hi Courtney,
    Wow you sure have been very busy! This is amazing, the love that is still being shown to you and Tripp. I am praying for a cure for this nasty disease and hope than many children who suffer from this will one day be healed.

    I am still praying for you often and I know in my hear that Tripp is having a blast. He is finally pain free and with His Lord who is telling him, "Well done! Good and faithful servant!!"

    Thanks for updating. I have been led to other children with EB and have taken up the fight in praying and interceding for them as well.

    Praying for you my dear.
    <><

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  48. Courtney, Hang in there. My heart hurts for you and I can only imagine the pain that your heart feels missing your baby boy. He surely has touched many lives and will continue to touch lives. Your loss is so fresh and you lost a child. No mother should have to experience the loss of a child and also for their child to have to endure such a terrible disease like EB. Tripp was/is so pure, so precious, so loving. I pray to God everyday to give you strength and comfort. I pass the cemetary here in Ponchatoula each day and love seeing Elmo and the Butterfly and the flowers at Tripp's gravesite. I pray for your sweet baby boy every day. Hang in there.

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  49. I think of you every day, and am keeping you in my prayers. I pray that you will have peace know that Tripp is forever more in the arms of Jesus.

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  50. Courtney,
    Glad you are keeping busy, I'm praying that celebrating Tripp helps in anything that could possibly resemble a healing process. From the photos it seems like Tripp's smile continues to shine through the supporting community! My daughters' favorite song is "happy and you know it" thanks so much for sharing the video. My daughter remarked how she didn't know "shake your booty" was part of the song and she giggled when you said it and he acted it out so we've officially added in those lyrics! Tripp is able to connect with so many through your dedication in capturing so many priceless moments. Thanks for posting, it's funny how I miss someone whom I've never met and was so happy to log on tonight and see your post. Be good to yourself!

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  51. Honey thanks so much for this update, I wish I could give you a big squeeze in person. I am reading your updates with so much gratitude for the support you and Tripp rightfully receive and the awareness of EB growing stronger every day. I feel such a weird sense of guilt that I could not do anything to help change the outcome of your story. I am so so sorry for that.

    I think often about how life is a blip and know you'll be reunited, that is one thing that I know in my heart! Many people in my circle now know about Tripp and EB and just love the bejeezies out of you both. Because of you so many people fight harder to be conscious of and continually counting their blessings.

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  52. Courtney you are such a beautiful person both inside and outside. Trip would be proud!

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  53. so glad you posted! i think and pray for you daily, and wonder how you're doing like i would a sister (i have never met!) i have kept up with the events on facebook, the outpouring of love/support is insane! so happy for you to be surrounded by a community like that! oh, and you and stephen look so great together! so happy for you!
    my 22 month old thinks tripp is the cutest thing! she always wants to look at pictures/videos of him!
    love,
    kaci (from texas)

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  54. I'm so glad to see your updates. Been praying for you every night before I sleep and been thinking about you. Hang in there!!

    Rita (from GA)

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  55. Courtney,
    I have been checking your blog for updates every single day, sometimes, twice a day. I yearned to hear that you are doing well. So today, when I discovered your post, I nearly jumped from joy. I love you and Tripp, you are in my prayers daily. And to think that before letting us into your life, I wasn't even a believer or a person of faith. Thank you Courtney, you have made me a better mom. I wish I can be one tenth of the mom that you are. But none of us can be as perfect as you, which is why God picked YOU to be Tripp's mommy. He is up there in Heaven, happy with what he has accomplished. And God, is watching over his little angel, proud and amazed at how many people Tripp has brought back in God's light. There are no words to express how you make me feel and how much honored I am to have come to know you, a beautiful, wonderful person, INSIDE OUT, an angel of God, a saint here on earth. Thank you.
    Christiana (Cyprus, Europe)

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  56. Hi I just found your blog from safe in heaven I am so sorry you had to say good bye to your sweet son. No words would ever be enough. I gave birth to a still born son 1-24-12. I was just going from blog to blog trying to be encouraged. Well you encouraged me, such a brave wonderful woman and mommy you are. Thank you for sharing your story. Saying a prayer for you tonight.

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  57. "But most importantly, I believe that his time in Heaven is a blink of an eye compared to the time I have left here on Earth. So I pray and hope that while he's running around and playing, it will seem like only minutes to him. And I hope he's having so much fun that when he finally remembers to turn around and look for his Mommy, I'll be right there."

    I truly believe this too Courtney.

    Take Care
    Corrina xx

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  58. Hi Courtney - I was really happy to read your update. I think about how you are doing frequently and say a little prayer for Tripp each night. I am glad you are getting lots of support and cards and letters - so many people care about you and your family and now also care about other people facing this EB challenge.
    I hope my 10km run in May is half as successful as Steve's run - I am running in honour of Tripp so will mail you some photos of the day. Here's to raising more money for DEBRA.
    Big hugs from Nat (London UK)

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  59. OMG... that booty shake video is awesome, I LOVE IT! Such an amazing little boy.

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  60. I have been following ya'll's journey 4 mths and have laughed, cried & have been truly humbled by u & ur incredible family. The love is wrapped so tightly in the strength of ur family it truly is a beautiful thing. I feel like I am a better person just by getting 2 know u & ur family by following ur story... I have truly been inspired by ya'll's love & endurance. I pray everyday 4 all of ya'll & I know in my heart that ur beautiful little boy is just smiling & playing until he gets 2 see u all again. I know that ya'll have the strength needed & def. the love needed 2 get u through these tough times, & now I promise that all of us who follow ur story will make sure u have all the prayers u need 2 continue 2 b as strong as ya'll have been... I am inspired 2 b a better person, a better mother & a better friend thanx 2 ya'll.

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  61. Thinking of and praying for your family.

    Tripp is such a beautiful boy, his videos and pictures always make me smile. I'm so glad there are so many people out there to support your family and who love Tripp and want to do in his name.

    God bless you, you're a beautiful soul.

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  62. It was so great and comforting to hear from you again. I've really been thinking so much about you and praying for you. I have to say that you are so very right, the cutest booty shake I've ever seen!!! Completely made my day.
    -Jennifer

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  63. I am so glad you posted an update! The support you have, shown by these 2 big events, is incredible. I still light my candle, and my son and I still pray for you every night.
    Hang in there! God's still got you!
    Gina

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  64. Just beautiful, Courtney. I like how you imagine heaven being a moment for those there, while we live out of our lives here. It makes it easier to think about those we love and miss..,that it won't be too long (to them) until we're reunited.

    With lots of prayers,
    Donna

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  65. Dearest Courtney: Thank you so much for the update. I have been wondering how you have been holding up lately. So glad that things are okay for now. That hole in your heart will be there forever, it just closes up a little tiny bit every once in awhile.
    You and your AMAZING family are in my thoughts and prayers every single day my friend. I just know, with your mom and dad's love, that you will be just fine. Please remember that so many people love you. Take care. Love and Peace Leah and Tabby's Nana

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  66. I am with most of the others who posted before me when I say it was SO good to hear an update from you! I know you are a strong woman but even strong people can only take so much, and I've been worried about you. I guess I need to have more faith. :-) So inspiring and heartwarming to see all of the events being done in Tripp's name. My daughter prays for Tripp every night that he's having a great time in heaven, and we pray for you daily for strength and comfort. I loved the videos, they made me smile. Hugs from Wisconsin!

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  67. Courtney & Family,

    It was so nice to see a new post from you! I understood though, as most of us I'm sure have, that you might need a bit of time to reflect and take some time for yourself. :) It's good to hear from you though!

    I had big ol' tears in my eyes when I read about all these incredible families and people, including your Dad, doing things...putting on events...raising money in Tripp's name. How am I not surprised though?! Little man is AH-MAZING and his legacy, his love, and his spirit will live on!

    My favorite photos of you? The ones with you and Stephen! You two are such a great {and cute!} couple. I feel like his love for you just radiates through the photo. He's got that unconditional love, protection vibe that I love so much! :) SO happy God brought you two together.

    Courtney, I already see and know that God will continue to share His messages and love with you. He will continue to show you that Tripp's purpose goes way beyond the physical life, and that there are big plans for you still.

    And yes -- it really will be like a blink of an eye before you see each other again; like he was ignoring you and he turns around to find you there again! Loved those videos! In the meantime, take your little mans lead and "shake your booty" through this life. Keep on enjoying the small things. :)

    Love all this EB Awareness Spreading! It's so fantastic!

    Lots of love & hugs,
    Katie & Family

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  68. Dear Courtney,
    thank you so much for posting again. Your post brought tears to my eyes. Every time I see Tripp's contagious smile I am so deeply touched..he is so precious, he really radiates happiness. His videos and pictures make me wish to hug him and cover him with kisses.I can only try to imagine how much you are longing to hold and cuddle him...I keep praying to God and to Tripp to support you, to advice you and to guide you in continuing Tripp's mission.
    The booty shake is simply adorable. I also like the video when he's ignoring mummy! It reminds me so much of my own son when he's deeply into something that interests him. As you said, I like to imagine that he's now absorbed in playing with my little Angelica, her little friend Vladimir and all other angels and that he's drumming for Jesus and that when one day he will turn to see where is his mummy, you will be there to run and embrace hm... thank you for sharing with us these beautiful initiatives that took place in Tripp's honor. It is so moving to see the outpour of love he arises and to see how we can mobilise to help you in your goal to win EB and in continuing Tripp's mission.
    Let's help Scott reach the 50.000$! A big hug, Talia

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  69. Courtney, I am so happy you wrote an updated,(I was a little bit worry how you were doing).
    The videos of beautiful Tripp are wonderful,what a personality he had and just so adorable the one shaking his little booty, he must be blowing kisses to his amazing momma all the time.
    Sending you a big ((HUG))) from Spain

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  70. Love the videos Courtney. He's got such a great rhythem. :)
    I have never thought of Heaven the way you described it in your last paragraph. I think you are absolutely right. He's up there shaking his booty and when he turns around, you will be there. This brought tears to my eyes and warmth to my heart. Made me want to leave work, go get my little dude from school and just hold him in my arms. Love you!!

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  71. Thank you so much for sharing your story and Tripp with everyone through this blog. I find myself crying each time I come here and read your blog, what a sweet precious Angel you had in your life and look and all the wonderful things he did while with you here on earth and continues to do in heaven. I lost a niece to SMA who was like my daughter and I cared for her daily, I would give anything to have her back in my life to hold her and kiss her just once more! Thank you again for sharing Tripp and your story.

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  72. What a beautiful update, thank you Courtney. I check your blog every now and then, because when surfing on the internet I came upon your blog and have been checking it ever since. You bring tears to my eyes, the love and pain jump out of yours last blogs and I think about your loss very much, because I have a little boy that looks a lot like your Tripp. I can't image what you are feeling now, but I can image how proud you are of your son and how much you love him. Always in my thoughts, a mother from Holland.

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  73. oh dear Courtney

    Please never stop with your blog because you always make me focus on what's really important in life.... when I am almost forgetting what really matters in life...I always get an email with an update on your blog to remind me that life is too precious and to remind me of everything I should not take for granted... thanks so much for always pointing me in the right direction!

    I am always so happy to see your words and I'll never see Elmo and not think and say a prayer to Tripp!

    Love,
    Thais

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  74. Just as God carefully chose Mary to be the special mother of Jesus, God carefully chose YOU Courtney to be the special mother to Tripp! You two are such an inspiration. Even though he left this world 2 months ago, Tripp is still touching the lives of so many! God bless you and your family, just know that prayers are going up for you. Hang in there, you will hold your sweet baby again some day! Your sister in Christ - Gretchen

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  75. I'm so happy and excited that these wonderful things are happening for you. It's so very good to see you out and about getting into your new life. Tripp will be with all of us through our lifetimes. His is a spirit that can't be forgotten. Smiling for you, and sending prayers. Jan

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  76. Courtney, I think of you often and pray for you every night. I am amazed, though not at all surprised, of all the "good" that is coming from Tripp's life on earth, post his heavenly birthday. Good is not a strong enough word to describe all that is happening. You are an angel on earth. Always know that so many people, many of whom are strangers, are praying for you every day and that YOU and Tripp have changed our lives.

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  77. Hi Courtney

    Im so happy that all this money was raised in awareness and to help find a cure for EB. Im thinkin and praying for you and your family everyday. Tripp was surely loved by many people. I hope people will always remember him and what he was sent on this earth to do.

    much love from Iceland!

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  78. This made me tear up. I'm so glad you are pushing through everything Courtney. You are such an inspiration. I hope one day I have at least 1/4 of the wonderful outlook you have on everything. You are such a sweet, kind hearted person and your family and friends are truly blessed to have you in their life. As TRIPP was truly blessed to have you as his MOMMY! Sounds like you have had a busy few weeks; and I'm glad you are finding ways to keep going.
    You are always on my mind, in my heart, and in my prayers. You and Tripp are my heros.

    Love you, Amanda Harvey

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  79. Thanks for the update, I have been thinking of you and praying that you are getting the strength from God to get through this hard time!

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  80. Courtney- So glad you updated us with a post. I check your blog daily. There's not a day that goes by that I don't think of you or Tripp. I'm still continuing to get closer with God. I have joined a mom's group at church that meets twice a month and a mom's play group that meets on alternated weeks. I have been attended church regularly as well. I now have a thirst for a relationship with God that I have never felt before. It's a work in progress. Trying to grow more in faith, to grow more as a wife and mother. All of this was sparked by following Tripp's story. I was amazed at how much money was raised for DeBra. Tripp's life has touched so many, myself included. I am forever changed.
    LeAnn Turner

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  81. Courtney-
    Look to the night sky
    The star that to you, appears to be bright,
    Will be Tripp,
    Looking upon you during the night.
    The lights of heaven are what shows through
    As Tripp watches all that you do.
    When you feel lonely. Look to the Heavens in the night sky above.


    A childs life (Tripps Life) is a story told by God

    God Bless you and your family.......

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  82. Hi Courtney and Family:

    I have thought of you frequently over the last several weeks. I am glad to read your blog and see that you are surrounded by loving people. What a great support system!

    Do you have any plans to go back into nursing? I just think you have such a loving attitude for all people that nursing is such a natural fit for you. I also look forward to a day when I can read your story!

    Please take care. We think about you, the family and Tripp frequently.

    Joanna, Joseph and Jude
    Madison, WI

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  83. "If you're happy and you know it, shake your booty!"
    Oh my gosh...THAT is adorable.
    So glad you gave us this update. I think of you often.

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  84. You were right: Cutest. Booty. Shaker. Ever!

    Continuing to pray for you. Such a good mom, I love the way you put it about Tripp being in Heaven, playing, and time passing so quickly, turning to see you. . . there you are, his beloved Mommy. You continue to be inspirational to many, many people. Thank you for sharing your story and your beautiful, sweet Tripp with the world!

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  85. Dear Courtney,
    I check your blog daily too and I'm so glad to read from you and see that you don't have to face this hard time alone. And I'm proud of you because you're still fighting to beat EB. I'm positive you will succeed.
    Still thinking of and praying for you and Tripp.

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  86. I'm sorry that you're hurting to the core. It certainly is a testament to you and your little one that so much community support and money was raised in Tripp's honor. Thank you for the time you've taken, during this very difficult (an understatement I know) time for you, to post an update on how you are managing. The fact that you are moving around and smiling that beautiful smile in those photographs - (and please don't think I mean your smile doesn't mean you're not hurting) to me indicates that you are doing as best as you possibly can. What an amazing strong and beautiful person you are.

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  87. Awesome people doing inspiring things! There is good in this world (just when you think there isn't)! Thinking of you and keeping you in my prayers. You and Tripp have changed my perspective. Someone mentioned the book Heaven Is For Real" above. I just read it and thought it was very comforting...you might like it too. Take care and know you are loved by Him and by all of us!

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  88. It is nice to see you post! Glad you are hanging in there the best you can! It is very awesome how much Tripp has inspired people and what they are doing in his honor. I can just see him running alongside everyone. I still think of you often and check back here for updates. I also love that booty shake video!! SOOOOO CUTE!!!!!!!! Prayers and hugs from Vegas....

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  89. Still thinking of you and Tripp every day. Thank you for taking time to keep us updated on how you are doing. You have such a gift -- to be able to beautifully express your heart and soul with words.
    So many wonderful things are happening because of Tripp -- what a blessing he is to all of us and especially to the EB community!! I am constantly amazed about how much he has inpired me and brought me closer to God, and even more in awe by the thousands and probably millions of lives he has touched.

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  90. I love this post! So many positive things for EB in honor of your little man. You continue to stay in my prayers.

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  91. Thank you so much Courtney for posting and sharing the 2 videos with us. Watching him be his wonderful self in all the little videos always brings a smile to my face and a tear to my eye. He is still my inspiration. I just love that little man Tripp and always will!!! You continue to inspire me also with your courage and insight and great, great love. Thank you for the lessons you have taught me about self-sacrifice and true devotion. My prayers are with you daily. Much love to you and your family.

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  92. Tripp....you are amazing even in heaven...look at all you have done little man :) Courtny.....keep your chin up.

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  93. Once again, this blog made me cry. So touching to see this outpouring of love and support!!! Tripp has left such a huge legacy.

    I haven't stopped praying for you

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  94. Thinking of you today. Sesame Street is airing the Butterfly Friend episode. I am sitting here covered in tears.

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  95. Dear Courtney,
    I just wanted to let you know I admire your strength through a time that I cannot imagine. My son is 2 and was watching Sesame St...it was the episode with Elmo's little butterfly song. Tears started rolling down my face as I immediately thought of your little angel. Through your story I have learned to really appreciate and cherish every single moment I have with my son. Thank you for that. I think of your family often and keep you in my prayers.
    Thank you again, Cassie

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  96. Think of you and Tripp often! May you know that you have changed my life immensely for the better. I realize the beauty (like in Tripp's life and the positive message he's spreading) in more of life. You're heartfelt posts are inspiring and I know Tripp is drumming with the best of them up above!

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  97. Courtney,

    You are truly amazing and thank you so much for keeping us all updated. Tripp is in the clouds looking down at you with the biggest smile on his face and he runs and plays with all his friends above. God Bless you and your family!

    The Moody's

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  98. I am a follower of your blog and love you all so much. You are a true inspiration for others. I have a question for you…my friend just lost a 4 year old due to choking and I am wondering if you can tell me any good books I can get her that would help her get through this grieving and healing time? Thanks so much!
    Love
    Jill

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  99. Always thinking of you Courtney. Thanks for posting the pictures and the new videos of precious Tripp. TEAM TRIPP!!

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  100. It's really hard to think of the right words to say. I just found your post from another blog, and just want to say how very lucky Tripp was to have such a wonderful person to love him, hold him, cherish him. All my best, and you both will forever be with me now.

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  101. Courtney, thank you so much for continuing to update the bog. Each day I think of you and Tripp. Your angel continues to live on in so many hearts and its amazing the wonderful things that are happening because of it. Courtney, I am praying for you. Your strength and grace is inspiring. Please keep updating us.

    With Love,
    Kelly Dudzinski

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  102. Hi, Courtney...

    Congratulations to you, your family and everyone involved for the successful fundraisers in the name of Tripp. And to your Dad for the impressive crossing of that finish line!!

    I don't think I will ever get enough of watching videos of Tripp, or looking at his pictures...just seeing him always makes me smile, while at the same time bringing tears. His photos and your stories about him are magical to me, and uplift my heart, however bittersweet.

    I don't have to tell you to keep the faith, because from all appearances, you've got it going on! Hold on to the love that is inside of you and all around you--it is truly a gift for yourself and for so many others.

    I just know that Tripp spends a lot of time telling others what a wonderful Mommy he has....

    Take care...Peggy

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  103. Hi Courtney, just wanted to tell you that I think about you, and your baby, and your family a lot. I keep checking the blog for new posts about how you feel, your healing process, your thoughts..
    There is such an incredibly touching song by Anastacia "How come the world won't stop" - but I dear to say it's not true, because the world stops from time to time to think and be in prayers with your baby.

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  104. How beautiful to see so many come together still for Tripp!..the mark he has left in this world is enormous. I have often thought about you Courtney, so glad to see people around you supporting you. I can't imagen how must be feeling but just seeing Tripp's video gives me an idea of how. Love you! and thank you for continuing to let us be a part of your life.

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  105. What an amazing update...there are such wonderful people in this world that is so full of icky things! Tripp is an inspiration to so many...his little life touched many hearts! Courtney, you are such a strong woman and an awesome example of who we should all strive to be. Loving, caring, humble and real! Praying for continual comfort for you and your family!

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  106. I'm so happy you still write your blog, and I'm SO HAPPY to see you smile, becuse I can't even imagine what you've gone thrue! I'm so glad to see that there is so many people out there who care!! I will be praying for you<33

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  107. Dear Courtney...

    I'm one of your many readers and supporters. Not ONE DAY has gone by that I haven't thought of you and Tripp. Between reading your blog and watching all of your movies (many more than once)...just watching that little guy shake his booty and drum and smile with all his happiness and sassiness...I can't even imagine how deep your loss is. He is so special, Courtney. I have no idea what you're going through, but I'm SO sorry you're going through it. My husband, my 12-year old son and I are all strong supporters of you, your family, DebRa, and of course Tripp, and we always will be.

    Love,
    Melissa Mularski
    Brown Deer, Wisconsin

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  108. I saw your excerpt in Reader's Digest then found your blog online. I have NO words to tell you how much I have truly been inspired by you and Tripp. I have never been so touched in all my life. He was seriously so amazing. Like I said, I don't have the words but I will pray for you every day. I truly believe there is a special place in Heaven for such a wonderful person like you, right next to Tripp. I dedicated my last blog post to you all. I will continue praying.

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  109. I just stumbled across your blog and i can't leave without saying that I truly admire you! Your strength and your courage is not from this world. Tripp was such a special boy!

    with love, Anne

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  110. Ok so as I write this bawling my eyes out. I am soo happy to have found this blog. I am not one that cries easily, and I can't say I knew you before this happened, and not sure I will ever meet you but I do want to say that I am glad you know that you will see him again and I love your view that it will be but a moment in time, and I think you are right. It takes a really strong person to go through something like this. The lord only gives us something we can handle and I am sure you don't believe you are handling this but I am sure that because of your life and his you have touched so many others lives. And I hope that brings you some sort of solice :) I enjoyed reading it, and hope that you will soon be able to LOVE life because he would want you to---sincerely Angela

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  111. Love the shake your booty video! how precious! He is a doll! I am so glad to see that a community is pulling through for you...you need that support...thanks for blogging...please keep blogging...I love keeping up with you and think of you often!

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  112. What a beautiful tribute to Tripp, how special!!! His sweet little life touched so many hearts. I just love the designs on the softball t-shirts and the Team Tripp shirts, so clever and so Tripp. Love and hugs to you Courtney!!

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  113. Tooooo cute! Yes, Courtney he really is he cutest booty shaker EVER. Thank you for posting the lovely videos.
    God bless you, Courtney.

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  114. I just love this. Tripp deserves the honor. I hope it gives you strength. Thanks for sharing this!

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  115. Stay Strong. We are all here for you.
    This post was one of the many that made my heart heavy, I will always follow you & this blog - HUGE inspirtation. Tripps story has changed me.

    XoXo - Jessica

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  116. Thought you'd like to know about this fundraiser for EB taking place in Jerusalem! http://www.jstandard.com/index.php/content/item/a_butterfly_on_jerusalem_stone/

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  117. I cannot imagine the loss you are feeling right now - the thought of it breaks my heart. I pray that you receive some peace and healing, and I will continue to do so. You are an incredible inspiration to me - may God truly bless you in the upcoming days and weeks.

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  118. Hi Courtney I have just spent the last few hours reading your blog and i am so so sorry for your lose. I just can not stop crying and I could not even imagine what you are going through, being a mum to 3 young kids i am so inspired by your courage and your love that you showed Tripp every day of his beautiful little life. I will be giving my babies extra cuddles at bed time tonight. You are an amazing Mummy!!!! xx

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  119. Happy 3rd Birthday in Heaven Tripp! You are one loved little boy! Running, Laughing, & Playing Little One! Sending you, your mom, & your family extra hugs & kisses! Keeping you all in my thoughts & prayers daily!
    P.S. Courtney, you are one AMAZING MOM! My Pokeno group & I are sending a donation today to the Butterfly Fund in the honor of little drummer boy Tripp & you Courtney. Again Happy 3rd Birthday Tripp & Happy Mother's Day Courtney!

    With Love,

    Nicole

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  120. I think I just spent over two hours on your blog. I just couldn't stop reading your journey, and I am in tears because of it. My little girl is going to be 3 in July and I can't imagine her not being here. You have opened my eyes to so much. Your strength and courage are amazing. Your faith in god and heaven are incredible. I will never forget your story and Tripp. I will never forget the gift you gave meto be a better mom to my kids, loving and kind and less selfish. For those that left you horrible comments in the past that is why you were chosen for this journey because with your incredible journey and beautiful words you will be able to educate everyone on EB(which I never heard of till now myself)and get rid of the ignorance. Thanks for renewing my faith. Thanks for sharing your journey. Taking the kids to see Sesame Street Live on July 1st. Tripp will be with us that day and in our hearts and thoughts. Elmo was always a favorite for us but now he is also a reminder of Love, and unselfishness.

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