Thursday, May 10, 2012

That can't happen fast enough.

I've come to the conclusion that I am one really lucky girl.  Reading all of you guys' comments is honestly a really humbling experience.  I know I've said this before, but I really cannot imagine going through what I went through and what I'm still going through without the support that I've been given by all of you.  Not only the comments on this blog, but the emails and the actual handwritten letters people are sending to me.  It's so comforting.  I'll be honest, there are some days when I get letters and I just don't feel like reading them... I think these are the days when I'm feeling semi-okay and I guess I don't feel like working up a pity party.  But I set the letters aside until that moment when I need a really good "pick me up" and I want to lay my fist into the wall.  Those letters sure do come in handy.  They remind me of Tripp's purpose here.  They remind me of the love and care I gave to him that sometimes I forget when I'm so frustrated, sad, and mad.
Oh, your letters are so kind.  They really are.  I'm not sure what I ever did to deserve so much love and support.  But I'm pretty sure it was the angelic little face and personality of my baby boy that made you fall in love.  Whatever it is, I thank you... from the bottom of my broken heart! 

I know I asked you guys what I could blog about because I was having a hard time trying to come up with something to say besides "I'm just plaid SAD."  But I think right now I want to try my hardest to explain to everyone how I'm feeling, as best as I can, because I think it will help me a little too (gosh... that is selfish, right?) 
Ok, so just maybe a brief summary...

I think I'll start by saying something that I'm not sure if I've ever said.  You know how the doctors told us that Tripp wouldn't live to be a year?  And you know how I watched as other EB babies passed away who were Tripp's age or younger or older?  And do you know how I would say in my blogs that I knew I didn't have forever with him and that one day I would lose him?  
Well, I never, ever believed that.  That's the honest truth. 
 I could say it a million times in my head and try to prepare my brain for it- but never could I picture my life without him.  Maybe it was because I literally spent every, single, waking, (and sleeping) minute trying to keep him alive, that I really and truly thought that we were going to win.  I honestly thought that we could beat EB.  I put my heart and soul and every single ounce of energy I had into keeping my baby alive.  I tried every possible option that I could to keep him with us, all the while telling you and everyone else that I knew the day was coming when he would leave me, and not believing it myself. 
 And with that being said, I was totally UN-prepared for what was to happen.  

I know everyone on this blog has seen Tripp's pictures and watched a few videos.  But I really want to focus on what an absolutely amazing human being he was.  Super human in strength, so wise beyond his years, smart as a whistle, talented in music, and had the most incredible personality of anyone I will ever know.  He was always happy.  As a tiny infant, and as a two and a half year old.  He literally only cried when he was getting a bath or a diaper change and he was in pain... and sometimes he didn't even cry for that.  I tear up every time I talk about him this way, because it's so important that people know this about him.  You couldn't help but be in love with him.  He was funny.  He couldn't talk and never in his short life spoke one word, but made me laugh and smile more than anyone ever has.  He made me the happiest girl in the world.  This may sound silly to you, but since he was very small, he was always in tune with my feelings.  He always watched out for me.  When I was happy, he was happy.  When I was sad, he would stop in his tracks and shut down.  Like he was genuinely concerned about me.  He did this with me up until his very last days.  
He always took care of his Mommy.  
There's so much to learn about life from this little angel.  

There was a period about 2-3 months before Tripp passed away that is almost impossible to describe.  We were EXHAUSTED.  Everyone.  Me, my mom, Mrs. Pam and mostly- Tripp.  This was crunch-time for me.  I knew he was getting sicker by the day.  I could feel it.  I knew when he starting interacting with us less and less that I had to step-up my "Mommy" game.  This was when I started talking to the doctors in Minnesota about the Bone marrow transplants.  Dr. Tolar said that in order to know if he was going to be able to perform the transplant, he would have to talk to me face to face.  Now mind you, at this point, I had only left Tripp overnight one other time when he was about 3 months old (before his trach).  So I was a tad bit nervous (and so were my mom and sister).  So Stephen and I booked tickets to MN, had a meeting with Dr. Tolar, and together decided that the BMT was not an option for Tripp. 
Of course I didn't want Tripp to have to go through more suffering and poking and prying... But now- there are  absolutely NO options left.  There is no feeling like watching your child suffer and being able to do absolutely nothing about it. 

So now what?  Well when we get back after being away for about 24 hours, Tripp was MAD.  He wanted me in that rocking chair pronto.  And then after that day, he didn't trust us.  I think this started his anxiety issues.  He would "switch rockers" literally about every minute or less.  I think he was nervous about someone leaving him again.  So he cried and fussed constantly.  Reaching up in the air to "switch off" as soon as mom or I got in the rocker.  
I don't know if I've ever described this either, but for the last 6-8 months of Tripp's life, he went straight from the rocking chair to the bed- barely getting up to play.  This meant that neither mom or I could even be alone with him (what if we needed to go to the bathroom.. or eat?)  But what I call "switching rockers" meant that whoever was rocking him, actually stood up, lifting him up lying down (on pillows sewn together) and placed him in the arms of the next person who sat in the rocker.  This is how he "made" us do it because he felt too bad to stand up.  

And so then I went into Survival Mode: AKA-
 "These **** doctors are not going to be right and
 this **** disease is not going to take my baby from me." 

We started trying everything... essential oils, topical vitamins, bathing him in "tea baths,"and even something called "miracle gel."  His sores were getting worse and healing them was impossible. 
Then he started with his feeding and belly problems.  Every time I would feed him, he would cry, hold his belly, or even throw up.  I still to this day don't know what was wrong with his poor belly.  Maybe it was also covered in sores like his whole little body (makes me sick and sad just to think about that).  But at this point, I tried everything imaginable to get nutrition in him... but it wasn't working.  No nutrition meant more sores, which meant he was in more pain.  So Dr. Defusco, Trea (Tripp's pharmacist), and I worked overtime trying to come up with a pain and anxiety medicine regimen that worked for him.  What a nightmare.  Bath time was an absolute nightmare.  There were times in the last few weeks that I prayed and prayed that my angel not have to live through another bath (and then when it was over, I would pray and pray that God not listen to my previous prayers... poor God was probably as confused as I was).  The trouble we had was that we weren't sure how much of the medicine he was actually getting because we didn't know how his little body was metabolizing it.  If his stomach and intestines were covered in sores, then how could he be absorbing it?  Oh, it makes my heart ache to think of the pain he was in. 

The last 2-3 weeks of his life were unbearable.  They seem almost like a blur to me today. 
I know that when Tripp stopped fighting, I was devastated.  I could tell that he stopped fighting when he wouldn't fuss us... he couldn't lift his arm to ask for a new toy... and he was so swollen, that he couldn't hold his Elmo.  It was only at this time that I started feeling like maybe I really wouldn't have my baby forever... maybe he was actually getting tired.  But I was still never able to picture my life without him.  Maybe at this point was when the "shock" set in.  Or maybe it was that my heart was literally broken and shattered into a million pieces.  

The night before Tripp passed away, I honestly didn't expect a thing.  I knew he was swollen and less responsive, but he had been SO sick SO many times, that I just didn't know what was ever going to come.  As far as I knew, he could have held on for months longer and bounced back... 
But for some reason, I woke up around 2-3 am- he didn't wake me- he was sound asleep.  I just woke up on my own.  His little body so swollen and propped up on blankets and pillows.  
I talked to him.  For hours.  I held his precious, swollen hand and I told him every possible thing that I could think of to tell him.  I told him how unbelievably proud I was of him.  I told him that never, ever could he possibly know how much I love him and how much of a better human being he made me.  I told him about my grandpas and how I knew one of them was up there waiting to ride him on the tractor, and how the other couldn't wait to finally meet him and sing "Long ago and Far away."  I cried and cried.  I said rosaries.  I talked to God.  I talked to Mary.  But most importantly, I told Tripp that it was okay for him to go.  That finally I was being unselfish enough to know that he couldn't fight any longer... but how PROUD I was of the fight he had.  How PROUD I was to be able to be called "Tripp's Mommy."  What an incredible honor it was to be able to be his Mommy. 
I promised him I would be okay.  And I promised him that his suffering would never be in vain. 
And then I fell back asleep.   

Only to wake up a couple of hours later to what I knew was the time. 
He was dying. 
I knew it, I could see it, and I could feel it. 
His skin was tinted blue.  
That skin that I kissed, cleaned, wrapped, and loved for 2 years and 8 months to the day... 
was turning blue. 
There was nothing I could do.  
He wasn't crying.  He was only breathing heavier by the minute.
And he wasn't responding to my voice or my touch.  

God woke me up at the exact, perfect moment... I'm certain of that. 

I ran to my mom's room and got her up.  I told her it was time.  
I picked up his heavy, lifeless body out of bed for what I knew was the last time. 
I sat in the rocking chair with him in my lap... my mom behind his head, sitting on the couch.  
We waited no more than about 3 minutes... rocking him and telling him it was okay... 
 and he took about 3 heavy, deep, gasping breaths. 
And that was it. 
He was gone. 
My heart, my life, my best best friend... was gone. 
In what felt like seconds.  
Something left me at that moment.  I can't explain what it was, but I will never in my life be the same.    I'm here to say that there is NO other love that could ever compare to the love you have for your child... or at least the love I had for my child.  

And that leaves me to today. 
The aching, torturous, minutes of every day.  
The nights- oh the nights... I dread nighttime.  I completely dread having to crawl in bed without my little man next to me.  I look at all of his bedding... the same bedding that was there the day he left me.  I look at his pictures hanging on the wall and I get a terrible, nauseating feeling in my stomach.  I hate having to live in this world without my baby.  It is complete and utter torture.  
And the people I see, bless their hearts, they don't understand.  
How could they?  
But they try... they ask how I'm doing, and me... I nod and say, "I'm fine." 

I'm a strong woman.  I know that I am.  
But I'm not okay.  Not right now. 
Am I living?  I guess... I'm keeping busy and putting on my happy face.
But losing a piece of your heart... sucks.  Bottom line. 
I'm trying to think of any way to describe what I'm feeling at this point. 
Lost, devastated, sick, mad, angry... 

Seeing parents pushing their kids in the grocery cart at the store is hard. 
Seeing kids in church is hard. 
Seeing any little boy and picturing what Tripp was or would be like at that age is hard. 
Seeing kids PERIOD, is hard. 
But what really irks my chain is when I (secretly) watch parents who are so ungrateful for their children.  Children are such a blessing.  I wish all parents would treat their kids like every single day was the last day they were going to see them.  Not every one is ABLE to have kids, and not everyone is gets the honor of being able to watch their kids grow up.  It's a gift.  I wish people would treat it that way.  
I will never be able to see my baby's first day of school. 
Or his graduation. 
Or see him get married. 
Or have kids of his own.  
There aren't words to explain what that feels like. 

I've said this before... but when you spend every second of your time and every ounce of your energy on loving and taking care of your only child... and then all of a sudden, he's taken from your arms-
It's sickening, gut-wrenching, and totally unfair.
And I never have and never will say "why me?"  Because if Tripp wouldn't have been given to me, I never would have known what true love was.  I never would have appreciated "life" (I'm talking about REALLY appreciating life).  If he wouldn't have been given to me, I would still be in my own little world, living what I thought was my perfect little life- oblivious to what was going on around me.  And if Tripp wouldn't have had EB, I wouldn't have gotten to spend every single second of his life with him, knowing and loving every inch of his little perfect body.  Maybe I would have missed out on something special that he did... if he would have been a healthy baby.  And if Tripp wouldn't have had EB, I never would have known that such a terrible disease even existed.  

It sucks that my angel had to suffer just for all of these things to happen.  
I think of him as a little warrior for Jesus... carrying his horrendous cross here on Earth and now ecstatically celebrating in Heaven over what he has done.  
I get that.  I understand that.  I'm not mad at God.  

The problem is that I want to be there celebrating, too.  
Why should I have to stay here when my baby is in heaven?
That's where I am right now and what I'm trying to figure out.  People can tell me all they want that I "have a purpose" and "I will do great things for EB."  
And maybe one day I will.  
But right now- it's just hard to wake up every day and actually survive... 
Much less do anything productive. 
I feel like I'm walking around life-less.
My only goal now is to get to Heaven.  
And that can't happen fast enough.   

Tripp's beautiful butterfly garden, planted by Grammy. 

Oh, how I miss those big brown eyes... 

And these precious feet. 

And what I wouldn't give to be able to hold these hands in mine again. 



  1. hugs Courtney... and peace be with you.

  2. I wish I could find the right words to say... I can't even imagine what you are going through, but thank you for sharing it with all of us. I admire you and Tripp so much, and I hope you know what an incredible mother you are! And you are absolutely right about children being a gift, and every moment with them being a gift as well. (((Hugs))) and hang in there. If there was anything I could do to make things better for you, I would! You are in my thoughts and prayers!!!

  3. Love u and praying for u. Miss him like crazy.

  4. Oh Courtney, I wish I could tell when it will get better; when life will get easier to live; when your heart will feel less broken. it different for everyone one. But you aren't alone!!! I wish 'i am the mommy of an EB Angel' club didn't have to exist, but it does. And you are NOT ALONE! We are all here for you. I am here for you. just an email or phone call away....always....just take it one second at a time....

  5. I know there's nothing I can say and I cannot understand, only imagine, your feelings. I want you to know though...that I thought of you about an hour before you made this post and prayed for you. I don't even know you...and you were on my mind/heart...and I know there are SO many others who could say the same. I also think of you and Tripp often when I am about to complain or feeling frustrated with something mommyhood-related. You and Tripp don't allow me to complain or be ungrateful. When I want to complain about how fast my baby is growing...I don't because I know I'm lucky to get to watch him grow. It's pretty remarkable that I don't know you but that you and Tripp are in my thoughts nearly every day. He is living on forever in that regard...and God is bringing beauty from pain. I know there is no reason good enough for you to still be here and him to not be...but I just know that there are good things in store for you here on Earth and then you will get to spend forever with your precious boy. To him, it will be like a blink of the eye...and there you'll be with him again. I'm praying for you.

  6. Your feelings are so real. So honest. So unavoidable. And from reading other blogs..SO NORMAL.It's sad that unfortunately once the dust has 'settled' people can't see inside and realise how awful it still is.Maybe a hug would be better than a "How are you doing now?" unless the enquirer wants the real, full, gutwrenching reply.They say time heals all wounds.I'm not sure that it really does because there are moments where if there was a scab forming, it will feel like it's being ripped open again. Your PURPOSE was to take care of Tripp.Not only have you lost motherhood, you've lost your JOB, your CALLING.It's a lonely place to be.And so, I can only pray. Pray that the moments of peace, comfort are enough to help you endure when the pain engulfs you.

  7. Courtney, As I sit hear crying my eyes out I am amazed at how you are able to put this into words. It has been 3 yrs since I lost my son Blaise and I still can't compose any of my feelings on paper. So many things that you said are the same things I feel. Reading this has helped me in a way that no one could ever understand other than a grieving parent. You are an amazing Mommy <3 Thank you so much and God Bless, Tammy

  8. Thank you.
    For those of us who haven't lost a child but know someone who has, you have given us unique insight as to what they are going through.
    Though I know that what you feel is only barely described in this blog, your words help. I see a little more clearly through your eyes what my dear friend is going through. What her nights must be like.
    It will be a year in July that her 20 year old daughter was murdered. I think she would like to stop time so that the coming Mother's Day would never happen.
    Thank you, Courtney for sharing your deepest feelings and thoughts with us.
    I am sure Tripp is very proud of his Mommy.

  9. so amazing! can't help but to think of you each time i hear building 429, "where I belong"! your so inspirational. I hope this doesn't make me sound like a "bad" mom but in certain ways you and tripp affected our life and don't even know it. I remember nights when my daughter would want to stay up all night, and me having to be at work for 6am. if ever I felt slightly annoyed with it I would think of tripp and cherish my baby being able to stand in her crib and holler for me. I would think to myself 'what would Courtney do?' she wouldn't get angry, she'd never take these nights for granted. you & tripp are truly a blessing in so many ways. God Bless You Courtney!

  10. Courtney - I don't have anything to say that could possibly do anything to make you feel better. I'm sure many of us who only 'know you' through you sharing your heart on this blog, feel like we wish we could say or do something. I know every time you share you emotions with us, I feel them so closely...I know that I will never experience the exact same emotions - as I'm sure you feel them 10 thousand times more. But my heart aches, my stomach hurts, my eyes swell up from the tears. I try and take myself to the place of trying to understand what it would feel like to hold one of my children as they took their last breath. I don't even want to fathom it, because I truly feel like I probably would die right along with them. Courtney we are here behind you, thinking of you, praying for you, and akwardly posting comments that we know will never be enough...they will never bring Tripp back...and that really really sucks.

  11. I have no words, only tears. You're retelling of his final night and passing was beautiful and heartbreaking. I thank God that he was in your arms right where he should've been. I'm so deeply sorry for your loss.

  12. Such a heartfelt post. Tripp was such an awesome little boy. I have watched many of your videos with my daughters. They still pray for him every single night during grace...that he still be Jesus' best little drummer boy and that they find a cure for EB. They are 12 and 8. It is amazing the effect his short little life had on so many people. You deserve your time to be sad, mad or whatever. There is no "right way" to do it. We continue to pray for you every night. God Bless!

  13. Courtney my heart breaks for you.I have never lost a child but through your writtings about Tripp I have lost a piece of my heart.Tripp was a brave,couragious soul.He will help you get through this.He has left the world a better place than he found it.I know he has made it better for me.Thank you so much for continuing his blog.He will lead you to the place you need to get to.Much hugs and love to you and your family.Thanks Tripp for touching my heart and soul.~jimmy~

  14. It's true that you know some people don't how much blessing children brings us. Your blog is on point and it got me on tears because I missed hearing about Tripp,you and your family. Im praying for y'all and what a blessing he has been for us all here on earth. Much love always, Cristina

  15. Courtney, you're amazing! Everytime I read your blogs it makes me want to better myself in every way. Ill be thinking about you Sunday and'll be in my prayers! I truly love you...

  16. My heart ACHES for you. You are so right. I thought I had spent 33 years of my life knowing what love was but after I had my daughter, I realized I never knew. No other love is so consuming and unconditional.
    I think of you often. I work full time, don't live near family, and have a husband that travels. Sometimes I get overwhelmed with being a mom. No matter what my frustration is; like crankiness, teething, lack of sleep, or whatever misery, I always think of you and tell myself "to appreciate this moment even if its not so great because I know Courtney would love to have this moment with Tripp" and you can't. I can't imagine how lost you feel. Do you ever talk to other moms with kids that have passed? That could be helpful because they truly are the only ones that could understand the torment you must feel. I have two friends who's children have passed in the last couple of years. One was from an accident and them mom is still so lost. The other was from an illness and she is the epitome of positivity and faith. I would be more than happy to get you in touch with them if you like.
    You and Avery's parents (Avery's bucket list) are on my prayer list every night.

  17. Thank you, Courtney, for sharing with us the details of the last few weeks you had with Tripp. To picture you praying with him the night before he passed is so touching and powerful. You are such a strong woman to give him permission to go, and he was such a sweet boy to wait for your permission. Thank you for the reminder to treasure each day, each moment we have with our loved ones.

  18. My heart breaks for you and your family. Reading the details of your final moments with Tripp brought me to tears. We will continue to pray for you Courtney.

  19. My heart aches for you so so very much. I have been following your blog since the day I saw that my mom was following through FB. I, my family, my friends, my co-workers all prayed/donated/spread the word about EB, all praying so hard that this cure would come in time to save your precious Tripp. It breaks my heart that this cure didn't come and still has not come for other precious children just like your little guy. I find myself having a really hard time with God's plan, but I know that he has one, and I just have to believe that I will understand one day. You have certainly reminded me of that. That he has a plan and he has reasons for all that he does. I wish you and your Tripp didn't have to go through all of this pain, but I truly think that one day, there will be a cure for this horrible disease, and you and Tripp will be part of the reason one is found.

  20. Courtney you are the Bravest and Strongest women i know..I cant sit here and tell you i know what your going threw because i dont...I have a little girl that will be 2 years and 7 months on the 28 of this month and i couldnt imagine anything happening to her...She is my heart and soul Im one of those parents that love being her mommy I believe i was put on this earth to be her mom and dont see how my life was ever happy without her a part of it.....I loved following Tripps story he had a pievce of my heart and i never got to really meet him....I felt as if i knew him forever..I did come and say my good byes to him.....I just want you to know that i believe Tripp knew how much you loved and cared for him and that he is looking down on you smiling...I keep a Blue Butterfly in my house for him......PLEASE keep blogging because i love reading them even tho I CRY my eyes out everytime and it breaks my heart I just couldnt imagine......Courtney you are a amazing mom and there is plenty of moms out there that needs to take lessons.....I go into storys and see moms running their kid over with the buggy bc they are not listening,or smacking them in the face,or parents that have kids and wish they were dies i just dont understand that........I hold my little girl even closer Courtney you ROCK and i will keep youy in my prayes...........

  21. Well said Courtney!!! I loved what u said! I cried because I was trying to imagine how his last minutes were and thank u very much for sharing a painful memory. You r a great woman and u were the best for your baby boy and now I know it: ) I loved your baby boy too! your baby angel wants you to be OK too. I am positive he misses his loving and caring mommy! I wish I could have met Tripp and you in person :) ...Good night

  22. Wow, i am in tears just as i am evertime i read your blog. There is no words that i can say to make u feel better or take away your pain but just know that u are an amazing person! Tripp was and still is an amazing little boy! I could not imagine having to go through the loss of my child. Whether u know it or not , you are a strong woman! You are loved by so many! Tripp is in heaven taking care of u just like u took care of him, every minute of the day! He is a beautiful angel, your wind, your rain, your tears, your emotions! He does everything now that he never got to do when he was with you. He is your protector and your strength! You are amazing and he knows that!
    Love and prayers,

  23. You are in my thoughts and prayers Courtney. I think about you and Tripp often and check back for your posts. Your amazing and I know Heavenly Father is grateful for you and proud of all that you've done. {{{{Hugs}}}} and love <3

  24. you should know I absolutely love you! I love Tripp and your entire amazing Family. I know you know this and a million people love you and have fallen in love with Tripp. and I know Tripp taught you so many wonderful things about this world, but I love you for teaching me so much more then I thought was there. you are truly amazing and I am so glad that for whatever reason it is that our lives have some what crossed paths. Thank you Courtney, as much as you can't imagine your life without Tripp I can't imagine what my life and future would have been with out you!

  25. I hope you keep finding the strength to do what you need to. I have followed your story for about a year and I just can't imagine. You make me a better mom Courtney Roth! Like you said above we take it for granted!

  26. Courtney - I love you more than you will ever know. Thank you for posting this beautiful, heart felt pouring of raw emotion. I'm lifting you before our God and Savior. I'm praying for comfort, peace and healing. Tripp was the luckiest little boy when God gave him you as his momma. But it is more apparent that you were blessed beyond measure to call him your son. I feel so honored to know you and to have known Tripp through you. I too can't wait to get to heaven because I want to meet this angel face to face.

  27. Of all your posts, this one touched me the most. You gave your whole self to your precious baby and now he's gone, along with yourself. The tiny bit you have left right now, the part that keeps your body going, is very small. In time, probably quite a long time, you will feel it start to grow again, little by little. I promise you, it will grow! You WILL grow into a whole self again, you really will. You have what it takes, but, like a great, great tree, it takes a long time. Your seed is so full of good stuff and you are planted in a garden of loved ones and Christ is your sunlight. You are giving service to others, like baby Anton, which is nourishing rain. Your pain is the hard winter ground, keeping you covered, but little by little, your roots push downward and your stem pushes upward and a leaf begins to unfold, then another and another.

    One leaf at a time and soon you'll be a great, great tree, full of self once again. You will grow so tall that you will reach into heaven and find your precious boy perched on one of your branches. Then you will look down upon yourself and see that you lived a rich and full life and it will seem to have been a blink of an eye.

  28. Oh Courtney, my heart just breaks for you. I wish that I had words that would console you and make things better, but alas there are none. You are grieving and I believe that what you are feeling is normal and part of the process. I can only imagine what you are going thru, because I have never lost a child. No mother should ever have to feel that kind of pain. Give yourself time. I know time will never take your pain away, but hopefully it will make it more bearable and then perhaps allow your memories to bring a smile to your heart when you think of your precious Tripp. You will always be his Mommy and one day when God feels the time is right, He will reunite you with your precious little one and Tripp will be anxiously awaiting your arrival, with drum sticks and an Elmo in his hand. I love hearing from you and about how you are doing, no matter how bleak. I love reading your stories of Tripp. Know that many are still praying for you and your family. Oh and I agree, children are a gift and I, too, wish that all parents treated them as such! Hugs...Love you! Teela

  29. You are such an incredible human being! Your hurt, your pain, your love for Tripp is perfectly expressed and felt through your writings. I am humbled to tears everytime I read a blog you post. Your son is an inspiration to me. You are an inspiration to me! Reading your journey has helped me to realize that it's okay for me to not understand things because sometimes its not understanding that keeps me moving forward. It keeps me in an onward pursuit and it gives me all the more reason to trust in God. I am so thankful to you for sharing your broken heart with all of us. Thank You Courtney for letting your heart, your precious Tripp, and your journey be an inspiration to us all.

  30. You are the keeper of Tripp. Holding his soul brings pain and joy. Yet you are here to do that. Tripp's soul is in heaven but it's echo is in you. So, hold on. Whisper and scream. Laugh, cry, sing. The echo of Tripp's soul is being heard...because of you.

  31. You are a very very strong person. You may not feel like you are, but you are. Reading your blog, I cry every time. It hurts to know such innocent people go through such things. You are a wonderful person and I believe God put Tripp in your life for this one purpose. It hurts, I know, but Tripp is helping you even now. He wants you to be happy he wants you to smile when you see Elmo or his little drums. He wants you to have this blog to help other people realize what EB is. No matter what, your baby is looking out for you. Don't ever let someone tell you to move on. I hate those words too. You do what you feel you are ready to do. Tripp will be patient with the best mommy in the world. (:

  32. Courtney,
    I honestly don't know what to say except that I feel your pain in every letter that you've typed. You were more of a mother to Tripp than some moms will be in a lifetime. You made a difference. I know your pain is too intense to realize that now but one day you will. Please know that now more than anything you need to continue living and live for Tripp. You have a lot to offer so many people. You were strong every day for Tripp, now it's time to be strong for Courtney. I am the mother to a mentally handicapped daughter, I'm also her full time caretaker and she is my heart, my life. I know that if something were to happen to her I would be devastated as well. Follow the plan God gave you. There is still work to do. Love you my friend.
    Mary Hooks

  33. My little 8 year old son still faithfully says "Be with Baby Tripp's mom" every night at bedtime when he prays. I cannot imagine the pain of losing a child. I pray that you feel the Lord holding your hand as you go through this sadness. Tripp was definitely such a special little guy who touched so many people.

  34. My heart is breaking for you. My tears are falling for you. I do not know how a parent goes on in life after the death of their child. I don't know how; I have no words of advice for you to carry on through your loss and pain; I simply do not know.

    I do keep you in my prayer book, and right now that seems so insignificant. I wish I knew what more to do for you. How to help you carry through this pain and make you feel a smile again.

    You were surely blessed to be "Tripp's mommy". Tripp lived because you loved him and lived your life to care for him. God knew what he was doing when he picked you. Hold that with you always.

    Peace be with you.

  35. This is such a heart wrenching post. I am sitting here, with tears in my eyes, wishing that there was something I could do even though I know there isn't anything. I can't imagine what you are going through and I will be keeping you in my prayers. Like you said, you are brave, and strong, and wonderful, but that doesn't mean you don't have all of these feelings. I'm glad that you have an outlet to release these feelings and help work through them. Writing has always been a release for me. You really will do things for this world, just like Tripp has, but always remember to take care of yourself too.

    I'm not always the best with words, but I will be praying for you and am keeping you in my thoughts.

  36. I can't even imagine how you feel. My heart is heavy for you, and I am praying for you. You are a very strong woman and I really admire and look up to you.

  37. Oh Courtney, how my heart aches for you and your precious little angel...Yet again, your complete honesty has reduced me to tears. I know it's no comfort, but he has inspired me so much. To keep going when I feel like giving up, to tell those around me what they mean to me and to never take things for granted. The pain you are feeling is so terrible, because the love you shared with Tripp burned so bright. We all wish we could make it better, but none of us can. I pray every night that Tripp is watching over you and that when the time is right, you will hold his hand again. That time may be a long way off and the wait may be hard, but to Tripp it will be but a blink of an eye. He will turn around from playing his drum and you will be there and he will look at you with those big brown eyes and ask you in that voice you've yet to hear 'Mommy why are you crying?'. Then you will take his hand and know that this time you will never have to let go. But for now, you have your own cross to bear, namely your life here without Tripp. Stay strong for his memory and draw strength from the love you share with him.

    Tripp was a lot of things to a lot of people, but he only had one Mommy. You. And even though his time here was brief, he was loved for a lifetime.

    "A butterfly lights beside us like a sunbeam, and for a brief moment its glory and beauty belong to our world, then it flies on again, and though we wish it could have stayed, we feel so blessed to have seen it."

    God bless you Courtney.

  38. I cry every time I read one of your post. Even if it's a happy post. Just seeing pictures of your beautiful son just pulls on my heart.

    The part where you said that God woke you up at the perfect time is tearing me to pieces. I don't think I've ever heard anything that shows the power of God so powerfully, than what I just read there.

    ;( I'm such a mess over this post I can't even type.

  39. Oh Courtney,
    my heart aches for you. I am crying and crying because the pain you must be going through is unimaginable. Tripp was your whole life. I am at a loss for words. I almost feel ashamed writing to you, knowing that no matter what I say, nothing can take the pain away. The only thing I can do is keep praying for you, to find your peace in whatever way you need to find it, and keep loving your from afar.
    Christiana (cyprus)

  40. This is heart breaking and i wish something i said could take that pain away from you but know you are loved Courtney. Dont beat yourself up, you ARE the best mommy EVER and Tripp was blessed to be born in your arms.
    Love & Hugs xxx

  41. Courtney,
    I can not express how much my heart hurts for you. I watched my mom go through losing a child and it was hard. You are so sucks! Just last night my mom sitting on my sofa, I was telling her about Tripp and you, her eyes filled with tears as says, as a mom you never think you will get better, time helps, but you never forget. Your story, your life, Tripps life has forever changed me. I look often to see how you are doing. Wishing I could take away the pain. Just know that you are thought of and prayers go up for you often. God Bless You <3

  42. Dear Courtney, I've read what you wrote with blurred tearful gaze. As I read, my heart was pounding fast and hard and I became more and more nausea. Because I know how it ends, and to be honest I do not want to read it again, but I have to - in case your story ends differently this time...

    It's like watching the movie Titanic. I know how it ends, and yet I'm hoping for a different ending. Every time I see the movie my heart pounds and I sit there and hope for a different ending. Every time...

    I can not put myself in your situation Courtney and feel how you feel but I can familiarize myself with what it would be like and feel to me of one of my children became terminally ill and faded away before my helpless hands and eyes.

    I could never be completely happy, completely lucky or completely carefree again.


    When I touch the thought "forever", I get dizzy and feel sick. To be forever separated from my children, it can not even register in my brain. I would not want to live anymore. I would not be able to live anymore.

    And where exactly are you. In the middle of this unimaginable grief and pain. Emotional kaos. And still continues your lungs to breathe. And your heart continues beating. Although it would be impossible to live on after loosing your own flesh and blood.

    Thankfully, you will meet again. You and your amazing son Tripp. Meanwhile he's looking down at you beeing your guardian angel. And I am sure that he is the worlds proudest boy because he has got you as his mother.

    I have no comfort to give you more than that your sorrow is my sorrow and your tears are mine when you cry.

    On butterfly light wings flies all my love across the Atlantic to comfort you, love Åsa in Sweden

  43. Dear Courtney,
    The strength, courage and love that you've shown throughout Tripp's beautiful life, has been such an inspiration to so many people. You have not only given encouragement to those in need, but have become an advocate for so many who didn't have the knowledge or resources to help them through their own journeys..
    Having followed your own journey, we have prayed for you and cried with you through each or your triumphs and setbacks..
    Most of us will never truly know the depths of the valleys you've encountered, but the mountains of strength and faith that you've shown has enriched and encouraged so many lives..
    I do know how incredibly difficult it is to always remain strong especially when everything within you wants to collapse in a heap and hide for a while..
    Tripp will ALWAYS be a part of your life and every day you will find a piece of him still with you.. Never forget that no matter how many times you fall, God is surrounding you and He will comfort you..
    I know this weekend will be exceptionally difficult for you, but I believe your baby is picking the most beautiful flowers with Jesus for you and when you see him again, you'll be together forever..
    There's a song that helped me to get through a miscarriage years ago and I recently found it on youtube.. It's by The Greenes and is: Jesus Has A Rocking Chair.. I think it would be a blessing to you..
    Finally, I'd like to leave you with some poetry that I've written.. May God continue to bless you and your family each and every day.. Still praying for you..(((HUGS)))

    His Love Always Heals

    I know your heart is broken and yes, it’s even torn,
    Your spirit is heavy and your mind is worn,
    Having loved her so much and suddenly she’s gone,
    You never imagined this day would come.
    I wish I could hug you and help ease your pain,
    Just to reassure and to bless you through this time of rain.
    There are some things that we’ll never understand,
    But God is faithful if you’ll just take His hand.
    He’s waiting for your call and knows how you feel,
    He sacrificed His Son Jesus upon Calvary’s hill.
    Let Him be your strength and on Him fully rely,
    Listen for His voice and He will reply.
    Cling to Him and the wisdom He imparts,
    Draw close to Him, He will heal your broken hearts.
    I don’t have the answers but I know the One who does,
    By faith He is our Master and also just because;
    His Love is everlasting and never knows an end,
    He’ll be there to comfort you again and again.
    And one day you will see, as God Himself reveals,
    That He alone holds the answers and His love always heals.

    Dana R. Duczer
    © 2006

  44. I love you. Just three simple words, but I hope they can help you start to heal. I love you!

  45. Hi Courtney,

    I really had to hold my tears back on this post as I'm at work...... hard. You are so strong and I wish there was something I could do to make you feel better but I know I can't :( Spreading awareness about EB I will for sure do! But I will never be able to bring Tripp back to you, and I know that Tripp is the only thing you want right now. He was such a precious and inspiration and please know that I never ever will take my child for granted and that I will love her so hard everyday for the rest of my life. You are not selfish, and if selfish is what you need to be to feel better, DO SO! No one will judge you!

    HUGS from Malin and Haley <3

  46. Thank you for letting us into your heart. Thank you for sharing your little man. I miss seeing his pictures on your blog. Thank you for continuing to write. Please don't stop....

  47. There are no words adequate. I'm so so sorry. Thank you for sharing your story.

  48. Courtney my publishing company sent a book to me to give to you. If you get a chance you can send me your address on my fb page and I'll mail it to you. Facebook is Brandy Decker, or, but don't email me at that address cause I don't use it anymore :)
    Love you lots

  49. Courtney, its takes a lot to me able to write these things. I can't even begin to imagine. God is right next to you, holding your hand every step of thud way! You are an amazing mom! I will always look up to you!! I will continue to pray for you and your family each day. The world has learned a lot from you!! With all my Love, Jennifer

  50. Courtney,
    I wish there were words to offer that could help, but there are no words strong enough to ease such suffering. My heart breaks for you. Your strength and courage in your fight for your precious child and in your willingness to share with us astound me. I pray that God sends Tripp's special angels to you, to surround you with the peace that he now knows!

  51. wow, you are amazing. your words went straight to my heart and pulled out tears. hugs!!!!

  52. *hugs* thank you for sharing your heart with us. as always, it is very touching and moving. you continue to be in my thoughts and prayers.

  53. Oh Courtney. You are in my prayers everyday. Bless you.

  54. I lost my daughter when I was 37 weeks pregnant with her. I've found that blogging about it helps. It helps me organize my thoughts and see if other people (other parents who have lost children) feel the same way. It helps me not feel alone. I'm glad you're writing. You said it's hard to come up with anything other than "I'm just plain sad." But you did, you wrote something beautiful and heart-wrenching. On some small levels I can identify with you. I will never see my daughter go to school, get married, have her own babies. It's terrible that babies die and I am heart-broken for us both.

    If you find that blogging your feelings helps you at all, then I suggest seeking other loss blogs as well. It helps to feel less alone.


  55. You are simply amazing to me. I cannot even imagine everything your feeling or what it feels like to lose that sweet baby. You (and all the moms that have lost babies) have to be the strongest person I know! I've been reading Patrice's blog and Anton's. I'm so glad you got to be there with them. Although I wish you would have had Tripp instead. Nothing I can say would help and sounds trivial to me. So I will just say that I will continue to pray for you and your family. God Bless You!

  56. Bless you Courtney. May God grant you the strength, peace in your soul and bring true joy back to you. It's so hard to loose a child. It's the hardest thing (in my opinion) a parent has to deal with. My love and prayers go out to you and all parents who have lost children. May you find joy each time you think of Tripp and what a wonderful soul God blessed you with. May your memories of him lift up your spirit. May you picture his happy smile when you feel down. I don't know if I'm praying for the impossible, but I do pray for you and your family and friends. I know Tripp through you and this blog. You have both lifted my spirits many times over. God bless you.

  57. I wish, with all my heart, that I could do something, anything to give you comfort. All I can do is pray and pray hard for you so that's what I will continue to do...

    Sending you love...

  58. I can't imagine what you must be going through. I'm a mother myself and know the true love for your own child. I'm aching for you. I've been following your blog and watching that beautiful baby boy grow every day. If it wasn't for this blog I would not have known what EB is and I would not have had the pleasure of meeting your little prince through your pictures and words. Thank you for teaching me to make every day truly memorable for my children. You and Tripp are loved by so many that you will never personally meet, but no that strangers, like me, all have a

  59. have a hole in our hearts after Tripp left us. Even my children know his name and they are only 3 and 2 years old. He will never be forgotten because you are here to keep him alive in everyone's heart. Be strong, but know that there are people who can help you through this. Thank you for sharing your beautiful baby with all of us. Thinking and praying for you daily.

  60. Your an amazing woman and have taught so many about love yourself. Thank you for sharing Tripps story and yours with us. We indeed fall in love with your lil drummer boy and you as well. God bless took and help heal you.

  61. Dear Courtney,
    Please don´t give up. Tripp is in peace now, he is free of pain...i can´t imagine live without my daughters too... i can understand what you are feeling. Please cry as much as you can, but don´t give up...someday, somewhere yhe light is going to shine again in your live, Tripp is going to do that for you..just believe.~

    A Great Hug from Portugal

    Sandra Coelho

  62. I am so touched by your story and can't imagine what a hard thing it is to go through. I am thankful for each and every day I have with my little boy that took 3 1/2 years to get here and can't imagine life without him. My prayers are with you.

    The Lord is my shepherd;
    I shall not want.
    He makes me to lie down in green pastures;
    He leads me beside the still waters.
    He restores my soul;
    He leads me in the paths of righteousness
    For His name’s sake.
    Yea, though I walk through the valley of the shadow of death,
    I will fear no evil;
    For You are with me;
    Your rod and Your staff, they comfort me.
    You prepare a table before me in the presence of my enemies;
    You anoint my head with oil;
    My cup runs over. Surely goodness and mercy shall follow me
    All the days of my life;
    And I will dwell[a] in the house of the Lord

    The great shepherd is with you and feels your pain and will lead you through.
    God Bless you and your family.

  63. My prayers is with you courtney! May god bring peace to you!

  64. Courtney,
    There are no words that I can say right now. I wouldn't even know where to begin. All I can say is that I am thinking of you and sending my prayers your way! I wish that I lived close to you so that I could give you a great big hug. The garden that your mom planted is beautiful and is such an amazing way to honor Tripp. I hope that the days ahead become a little easier. I am sure that they wont ever be the same, but hopefully they will get easier. Sending love and hugs your way.

    Chrissy Flannery

  65. Oh Courtney.... What an honest and beautiful post. I do not have kids. I cannot have kids. I have had three failed pregnancies and for a long time I, too, had a difficult time seeing kids in shopping carts, or anywhere. I have a difficult time passing the baby isle in stores. I am almost 44 years old now and when I see a baby, I long to hold it. My pain is there but I never got to know my children so, I guess in that way, I am lucky. And you are so right. You got to know your amazing wonderful loveable talented Tripp. And in that way, you are blessed. You are amazing. I cry for you... with you. The world needs you in it.

  66. I have no words, just tears and prayers! )))) HUG ((((

  67. What a post, I can't imagine your pain! I'm soooo sorry for your loss! Thank you for reminding me what truly a gift my children are. Lifting you up!!

  68. This is one of the best posts you have written. I was hesitant to comment on your previous post, but now I see that you did exactly what I thought you should do. We don’t want to read about anything specific. Your blog has always been your way to express both, what was going on with Tripp and how you handled it. It should not be any different upon his passing. Use it as your outlet. We will gladly read it and at least be by your “cyber side” through it. I have no idea how hard it is to go through this. BUT I know how my daughter taught me what love really means. I know how every single day a mother loves their child even more. This love is stronger than us. And while the sorrow you go through is unimaginable, I agree with you that having lived not knowing what this LOVE feels like is not living at all. Just hoping each day gets a little easier…

  69. Courtney, this is absolutely BEAUTIFUL! What a precious angel Tripp is and I can't explain to you how grateful I am to you both, for sharing your story, and bringing me closer to God. I, too, believe Tripp's purpose was to bring God's glory to the world, and I for one can tell you that he succeeded. Daily, when I get frustrated with small things in life, or my 2 boys are acting out, I stop to think of Tripp and he helps me put everything into perspective. I, for one, will never, ever take my children for granted, and I think, in a way, Tripp has helped me to always remember that. I pray for you both daily, and I can't wait to meet that precious angel in heaven one day! Thank you Courtney!

  70. You are so amazing. I hope to be half the mother to my kids as you were to your precious Tripp. He was the luckiest little boy to have you as his mommy. I have that lump in my throat and so much empathy for you...I pray that God eases your pain. You and Tripp have truly changed my life and I am spreading the word about EB as much as I can and hope that someday, there's a cure.
    We all love you Courtney.


  71. Courtney, my heart is always with you as a mom it's broken for you as well. Reading your words have always brought tears to my eyes rejoicing in the good things and mourning with the bad. Tripp is forever in our hearts!

  72. I pray this gets easier for you. It is ok to feel the way you do. When someone asks how you are doing, tell the truth, it is ok to be honest. I will be praying for you on Monday as I know that day will be really hard. It is my baby's birthday as well

  73. I started reading your and tripps blog back in november and I spent days and days reading it and crying with every single word picture and video. I've wrote comments and you an email telling you before how I will for ever be changed by reading tripps story! You and absolutely an amazing woman and mother! Tripp was very lucky to have you as his mother!!! Tripps has made realize how I take SO many things for granted and I work on that everyday!! I just became a mom for the first time back in July and it just breaks my heart that you've had to go through all of this and all the things tripp had to go through! I could not imagine!! I hope to soon come to one of the fund raisers for eb and have the honor of meeting you! I pray for you all the time and wish you well and hope things gets somewhat easer for you!! Just by reading your blog I can tell that Tripp wouldn't won't his mommy sad and upset!!! He's definitely made me want to be a better person and I thank god I found your blog!!! :)

  74. Thank you for sharing this. Mother's instinct is so strong and the fact that you woke up that night and talked to him for hours and that you woke up again right as he was taking his last's so sad and so moving. I feel like a better person because I know about Tripp and your life together. You are right when you say that you were blessed to have him in your life because you know what true love is. I wish you weren't in pain and I'm sure your heart is broken in a million pieces and maybe that I can't take your pain away but I can cry with you. All of us who support you are with you. You are one proud mama and have every right to be. I love to hear your stories about him and how he cared about you so much. I think of all of the nonsense things I see on tv and the news and think about how much I would rather them talk about EB or share a video about Tripp and how much it would change the lives of the people who were watching. Children can sense your feeling and Tripp took care of you and still is. You deserve all of the love and support you get and much more. You Courtney, Tripp's mother are my hero. Tripp is my hero too. And those big brown eyes of his melt my heart. Love, Kristi

  75. I think I am going to print out some of this post and read it when I am feeling overwhelmed with my kids. You are a wonderful person and thank you so much for sharing your thoughts and feelings! That butterfly garden is beautiful!! You are in my prayers.

  76. You are constantly in my prayers.

  77. I don't even know what to say, because there are no words. My heart breaks for you over and over. I pray for you often...

    I know this might sound strange, but you and Tripp are the reason I give my little guy extra hugs & kisses each day. Everyday is precious because life is so fragile.

  78. God Bless you Courtney, I don't know and never will know the pain your going through but, I do believe God made "you" Tripp's mommy for a reason, no one else could have loved or cared for him more than you, you were his rock and now he is your's till you meet again in your heavenly home. I pray you will find the peace you so deserve Courtney, Tripp has!

  79. I can relate that you can't possibly be "the same" or "okay" ever again while walking this world without your child. I know you're not really "fine". I do, however, hope that God will bless you with the peace and comfort that you need to make it through this life with some joy before you are reunited again. When that happens, this world will feel like a blink of an eye. Much love to you...

  80. Oh and Happy Mother's Day to you. You are and always will be one of the most amazing, admirable mothers I know!

  81. I don't know what to say except that you are loved and prayed for and tucked into the arms of God. I love that you're able to express yourself so eloquently. I wasn't, and still am not, able to really get out the way that I feel about losing Jordan. It's still a mystery to me. I'm praying that angels surround you.

  82. You have helped more people than you will ever realize, myself included. Thank you so very much for sharing what can only be the most soul bearing emotional parts of your life. I hope to one day be able to write you a letter and share with you exactly what you have taught me an "experienced" mom of 3. Thank you again. You will forever be in my prayers. God Bless

  83. Thank you for the reminder to love on my baby and not take a moment for granted. This post makes my heart ache for you, Courtney. We love you.

  84. Oh my word how I needed to read this right now at this time in my life. I have cried a thousands tears for you, Tripp & ya'lls family & continue to do so. Please let me tell you what an inspiration YOU (& Tripp) are to me and so many others. Prayers continuing for you and your family♥

  85. Bless your heart, Courtney....a broken hearted mommy. I pray that God will give you a peace that surpasses all understanding, like only he can do.

  86. My heart continues to break for you Courtney. I want to say something comforting, but there is nothing to say. All I can think to say is to ask what would Tripp want for you? How would he want his dear mommy to go on in these tough days? He was strong, so he'd want you to try your best to stay strong too. He enjoyed life as long as he could...he would probably want you to try to find some joy too. He had both good days and he'd understand that you too would have both. Thank you for sharing him with us all...

  87. Courtney you always make me weep big splashing tears. After I write this I am going to go hug my baby boy. I hope this suggestion doesn't offend - I think perhaps you need to have another baby. Not to replace Trip, of course, but to give you a new focus for that huge volume of love and care that you are used to pouring out. If that is too much, maybe consider volunteering a few days a week at a foster home? Perhaps you are so conditioned to loving and giving that without a vessel to pour that into you feel lost.

  88. I just want to thank you for being so honest and sincere. You are right, we could never truly understand your deep loss but I will continue to pray for your healing. Thank you for sharing your amazing little boy with the world so that, we too, will stop and think about the true joy our children should bring us everyday.

  89. Thank you for sharing your life with us. You and Tripp have touched so many lives. I dont know how you are picking yourself up day by day. My heart aches for your loss. Please know that you are being lifted up, mentally, physically and spiritually. Your unconditional mother's love have tought us so much.

  90. Oh Courtney. I don't even know what to say as my tears are flowing. Thank you for being so real and open and honest. I cannot imagine all that you go through every second of every day. When I rock my little one and sing songs before bed, I think of you EVERYTIME and pray for you EVERYNIGHT. You have taught me how to be a better mother and appreciate every moment. Until Tripp's story, I had never heard of EB, and now I try to tell everyone I know. I KNOW that you are going to do great things, as you already have, but it doesn't have to be right now. I try to think of heaven like this...for those in heaven, time is not as it is on Earth. When Tripp sees you again, he is going to feel like he just saw you and didn't leave you for long. Us on Earth are the ones that have to deal with a time barrier, but not Trip! I pray for peace for you everyday and know you and EB are always on my mind. Hugs.

  91. Oh Courtney, how I WISH there was something all of us could do or say to take your pain away. My heart hurts so bad for all of the parents that have lost children. I could NOT even begin to imagine what you are going through. I hope you are still seeing your therapist, because they can help you through this grieving process (along with God, of course). I pray for all parents that have lost their children and for children who are sick & dying. We ALL love you Courtney! Your family loves you. Steven loves you. EVERYONE loves you. You are an incredible person. Thank you for keeping your blog up and telling us all your feelings. That is probably pretty good therapy for you as well. Love, hugs, and prayers to you beautiful girl!

  92. This is the first time I've ever commented on your blog, Courtney, because it feels like no words I have could ever do justice to your amazing son's life or the tremendous, gaping loss you feel now.

    All I can tell you is knowing Tripp through you has helped me to feel a great lover and appreciation for not only my LIFE, but my children... I'm hugging them closer and remembering what a GIFT they are.

    Your boy is so beautiful and I know he's in Heaven, no longer suffering. I'm just sorry his Mama has to suffer so :( I can't even fathom your love and strength - you are truly an inspiration. Thanks for letting us all in....

  93. I am so sorry for what you're going through. We still say prayers for you every night, and will continue to do so. May God grant you the peace that passes understanding. Your little man has done so much for so many, you have so much to be proud of. Love and hugs to you from ND.

  94. Please know that you are not alone. Perfect strangers whose lives have been forever changed by you and that wonderful little boy, are with you always. I pray for you and Tripp every single night before I go to sleep.
    Tripp is also with you always and will be with you every second of every day until that blessed day you walk into Heaven and wrap your arms around him. ((((HUGS))))

  95. I can't imagine the heartbreak you feel, Courtney. But I wanted to thank you for being so honest with your feelings and sharing your story with us. I have loved getting to know Tripp through your blog, what an amazingly strong, loving, smart boy. I'm so very sorry for your loss.

  96. Oh my goodness. I knew, from reading here, some part of what Tripp was going through at a particular time or a particular day. But seeing it all laid out together in one post, along with the agony of his last days ... it's absolutely heartrending. Tripp's life and his mission, his love and his bravery -- all those things were miraculous, awe-inspiring, unparalleled. But I don't think any of us could help losing sight of that beauty and meaning at times when confronted with the reality of a sweet baby in so much pain.

    Don't worry about being "productive" right now. You spent every second of the last 3.5 years growing, giving birth to, and nurturing this beautiful soul who touched so many lives and changed so many hearts. You've already accomplished more than many people do in a hundred years. This is the time to take care of yourself, and let others take care of you. I have no doubt that when it's time for you to continue your life's work, God will let you know. It's just not time yet.

    I wish I had some words of wisdom about how to go on living without your baby here with you. I think to those of us who are mothers, it's an unfathomable question, because the unspoken assumption is that losing our babies would surely make our own hearts stop too. But what do you when your heart doesn't stop in your chest, when you continue to breathe without conscious thought, when you keep on waking up in the morning? I don't know. I really don't know. The only advice I could even guess at is to give yourself permission to feel whatever you feel, lean on your family and friends, do what it takes to get through each day, and take it all one step (or one minute) at a time.

    All I *know* for sure is that Tripp did not take his suffering with him. The affection you gave him, the meticulous care, the security, the laughter, the words of love, the bond you shared -- that's all he took. Only the good. Only what makes him your son and you his mother. I think the rest is so completely left behind that he couldn't even recall it.

    I believe the same is coming for you, just not soon enough. All of this will pass away. But until it does, I hope that you can get enough peace and love and strength to cling to each day, just a tiny taste of what's waiting for you in Heaven to comfort and reassure you and give you strength.

    Much love to you and your family. You are all still in my prayers.

  97. Thank you so much for sharing the painful last few weeks and moments of Tripp's life with us. I got chills when you said you woke up just shortly before he died, and you knew it was for a reason. I have tears streaming down my face for you and for me, having lost a child also. I also get so frustrated with parents that don't appreciate their children. They are so lucky their children are alive and they don't know this pain. I've been thinking of you a lot. Many hugs.

  98. Thank you - as in really thank you - for your honesty in this post. I'm so pleased that you had that time to talk with your little man the night before he passed away. And I'm incredibly sorry for the pain you are in right now, especially when you described your emotions before you go to bed and face the long night, only to wake up to face another long day without Tripp physically in your arms. I expect you must want to shout at the (well meaning) people who ask how you are, I suppose it's their way in to trying to reach out to you but I'm sorry that it just adds to the hardship. In lieu of me not beng able to 'fix' your life for you now and bring back your Tripp to you, as I wish I could, along with all these people who comment, along with your family, I will wish for just some moments of peace for you where you can still hold on tightly to him in heaven but not have the insurmountable pain with it. Just some moments of peace for you is what I will wish.

  99. Not many people share their last moments and I think I speak for all of us when I say we appreciate it. The more I read, the more I cried. Nobody can ever imagine being in your shoes. And nobody ever wants to have to be. Even you, I know. I am praying for your strength and know that we all love you very much and are here to support you in any way!

  100. My heart just physically hurts for you. I am divorced and only get my 2 children every other week, and I am uncomfortable and antsy and sad until they are back in my arms, but I do know that they are coming back. I find that when they are here, I monopolize their time.....I am selfish and don't want them to go to sleepovers or parties because I want all of the time with them that I can have, but I know I have to let them be children and be apart from me sometimes. Your blog post today makes me feel like I am mostly doing the right thing and appreciating them as much as I can. I know what you mean about the parents who don't. It breaks my heart that you feel you want to leave this earth to be with Tripp....I don't know what that internal conflict feels like, but I do know that earth needs MANY more people like you. It would be such a loss for not just mommies around the world, but the EB awareness world, and just the world of kind people in general. We need you here. We want you here. I will pray for strength for you to someday be able to see the beauty you provide everyone here in our earthly life.

  101. God Bless you Courtney. God Bless Tripp. My heart is breaking for you all over again. Every day is truly a blessing. Thank you for sharing your life with us. Thank you for your strength.

  102. It is okay to not be okay. You're still processing the magnitude of everything you lost, which is a huge thing to process and really absorb.

    Thankfully life only comes at us one day at a time. I think asking for more than that right now would be too much to bear.

    I wish I had some great words of wisdom, but just keep doing what you're doing and hang in there. Grieve. Take care of yourself and let it out and let it all in as you see fit.

    I know it seems impossible right now, but one day it will get a little easier. And then the most random things will just bring you right back here and to your knees. And then the good days will come again and there will be more of them and they'll start to string together and the "new normal" will happen. And then the anniversaries will bring you back here, but each time it's easier to bounce back. Our losses are not the same, but year 1 was hell, year 2 is a little more manageable, and year 3 has been almost normal for me. New normal, though. The hole is always there, but it's not always so raw.


  103. Hugs, love, and prayers to you. I wish, like many I suppose, that I had something more to offer, but I don't.

  104. Every time I read your blog, I really do get a new perspective on cherishing our children. I definitely take them for granted because I assume they will be here tomorrow. This of course will not make you feel better, but what a blessing to be able to say you loved your child completely and wholly, without regrets. When you said something left you when Tripp died, I believe that was a piece of your heart that will stay with him forever in eternity. In an eternity where he is in no pain, has no anxiety and is surrounded by nothing but love. The really beautiful thing about that is I have no doubt that your heart is big enough for that piece to be missing. Know that it is time to mourn, and I'm guessing not your time to be in heaven, or otherwise how would the rest of us figure out we better treat our children and loved ones better for tomorrow is not promised. I pray for your peace and rest.

  105. I am so sorry, that he couldn't be healed. I can't wait to meet him in heaven someday. I am praying for you and your heart to heal. I just can't imagine your pain! All I can say it that I am praying for you and wish all the best to come in your life. I know his life was not in vain, God will bring glory to himself through you and Tripp.
    Holly Arnold

  106. Courtney, The only reason I write anything, is simply because I don't want to be a voyeur on your pain, otherwise I really don not feel as though ANYTHING I could possibly write would be minutely adequate. My heart aches as much as possible and I pray for you constantly as you cross my mind throughout the day. I had a thought.... From the 'statistical laws' there will be several of us that have followed sweet Tripp that will experience the loss of our own children whether it be through an accident/illness. It is a very morbid thought perhaps, but true simply b/c of mathematics and the number of people that follow your blog. My thought is that Tripp has changed many of our own lives forever and how we parent. I know I constantly think of Tripp when I lose patience, a harsh word tips my tongue, or I just want to be selfish for a moment. God forbid it is His Will to take one of my kids in the future, but how grateful I would be to have had an opportunity to gratefully parent, which is much different than parenting without appreciating this sweet gift. Anyway I'm sorry if this makes no sense, as it is hard for me to articulate my thought exactly, but I want to say thank you. You certainly owe us NOTHING, and Tripp could have come and gone without the world knowing of this miracle. You have changed my life and I DETEST that you have to go through this agony. I can only pray and honor your wish of parenting with grace and a thankful heart which I promise to you. I wish I could hug you- thank you and we are praying with you.



  107. I have been following your story for a little while now. There is absolutely no way I could ever imagine what you are going through. I was crying while reading your story and it touched me to the very core.

    I once asked an elder in my church "why do some people get to have a long journey in life, and others such a short one?"

    He replied "because in the pre-existence, there were some who were so strong, so good and valiant fighting in the army against Satan.. that they do not need to live out full lives to be judged, because they already proved themselves worthy."

    I then asked, "Well why do they need to come to Earth in the first place then?"

    And he answered, "because we all need a physical body to be translated. Even in the short time they are here, they give others the incredible gift of lifting up and touching their hearts so as to strengthen them for their own journey ahead."

    Thank you so much for you incredible strength and I am so thankful for your blog. You and Tripp have touched so many, many people... causing people to become aware of EB, and also for those people who want to become better people by the example you lead. That in itself is both yours, and Tripp's legacy.

    Just thank you.

  108. Praying for you to find some peace Courtney. I can't even imagine the pain you feel. My heart hurts for you. Thank you for sharing him with us. He has been a blessing (and still is) to many. You'll see him again one day, but I'm sure he would want you to live.....I mean REALLY LIVE. Not just go through the motions. But I'm sure that it is hard. I have nothing to compare that to because as you have already stated, no one can know how that feels unless they have experienced it themselves. But just know that there are a lot of people out there praying for you and sending love your way. Keep your head up. XOXO

  109. Courtney,
    Remember that it's not that you "will do" great things for EB, but rather that you HAVE done and ARE doing great things for the EB community, for all specials needs mamas, for God and for everyone who followed Tripps story. You don't have to do anything more than what you have done and what you are doing. Take care of yourself now.
    Thinking of you and your family in Ontario, Canada.

  110. Courtney, I want to let you know that I think of and pray for you on a regular basis. I wish there was something more that I could say to help, but know that you and your sweet sweet boy are loved from all around.

  111. O Courtney, reading this has brought me to complete tears. My heart just breaks for you. I'm praying for your broken heart!

  112. Courtney,
    I totally get your feelings. I held my baby at her birth, but she was already gone. For months, years, even to this day sometimes, I did not want to be here. Not here. I wanted to be there, up there, in Heaven, where she is. It was a hard feeling to have because I had and still do two other children and how could I ever want to leave them? Or leave my parents or my husband? But the feeling was just something I could not shake. I went to bed almost hyperventilating, because I just couldn't stop thinking about her and the most movement she exhibited in my tummy was always at night. I don't know what to say to help you feel better, I want to tell you something to warm your heart, I just feel so awful for you. I love your son. I have never met you guys and never will, but Tripp was special beyond words, beyond feelings, beyond everything that is tangible on this earth. I HAVE come out of my constant feelings of wanting to be with my daughter. It's been 4 years. I don't know how long you will feel this way. I think you will gradually let those feelings go, but they will never be completely gone, mine sure are not. Grief is such a mysterious process. You grieve your way. You are strong, you're right, and your strength will see you through this path you must take and have been taking so valiantly. Thinking of you! I think of Tripp always.

  113. Praying for peace and comfort for you, Courtney.

  114. Courtney, thank you so much for sharing with the world your true feelings through this period of time and keeping the memories of Tripp alive. I don't know how you do it, but your blogs, pictures, and videos always make me cry. I so wish there is something I could do to take even a fraction of your pain away. Please know that you are always in my thoughts and prayers. I hope I will be blessed enough to meet Tripp in heaven one day to thank the brave warrior.

    Josephine from California

  115. I, too, lost my son in August of last year. He was 17. He was killed in an ATV accident. The strange thing is that some the things you have written about here are some of the very things that have had me upset all day today. He would be graduating high school in just under a month. I won't get to see him do that. I won't get to see his success. I won't get to see him get married and give me grandchildren. I know every feeling that you talk about. It's almost as if you're speaking from my heart. People always say it will get easier. It's been just over nine months for me and it still feels like yesterday that I lost my baby. There is no way the void will ever be filled in our hearts. Our babies took a part of our hearts with them when they left us. From one grieving mother to another, I know your pain and you have been and will continue to be in my thoughts and prayers.

  116. I can't help but think of this song "Long Way Home" by Steven Curtis Chapman, a christian musician who lost his duaghter at the age of 5. The whole time I'm reading your story, the song is just playing in my head. The same God that gave you the strength to help Tripp in his time here on earth is the same God who will give you the strength to heal and continue on your journey home with Tripp.

  117. I sincerely hope you are able to write and publish a book. Do not be ashamed or guilty for what you feel it is real and pure, just don't stop feeling.

  118. Thank you for this, and I don't think anything you do that helps you can be called selfish! I am so glad over and over that you had that time with Tripp and he hung on until you could hold him and be with him. What a blessing.

    It doesn't take away the pain. We all want to try to help share it, so we're here to witness to it and support you.

    I hope you get a little bit of heaven everyday.

    Does Tripp visit you in your dreams or leave signs that he is there with you?

  119. Courtney, You are such a sweet, sweet child of God. When you go through trauma and you just can't wrap your mind around what has happened, all you can do is lean on Him and believe that his strong and mighty hands are lovingly holding you up while you continue to take one step at a time into the future -- no matter how small that step is. Believe that you are right where you need to be doing exactly what you need to be doing. You are in my thoughts and prayers as you journey forward. I wish you many blessings.

  120. Courtney... U are an incredible person
    I see so much love and Love is what we all have to keep trust in.
    Ur heart will always ake for Tripp, but it will get better. U will be able to handle it in a different way in the future... But right now u should just alow ur self to feel how u feel...
    U are an inspiration to all of us mothers or all of us parents by the way...
    We all love u and Tripp
    Love from Sweden


    See how far away you have touched lives and how far away you have people caring and praying for you and Tripp...

    The only thing i HATE about your blog is your comments about you being selfish by writing your raw honest truth down. I HATE it when you apologize for ANYTHING! We all LOVE to hear ANYTHING from you and we are forever INDEBTED that you share your heart with us...

    God bless you...

  122. Oh Courtney, I look at my child everyday and I think about you and Tripp and I know I do not know your pain and sadness, but if something was to happen to my little man I would go insane and i would feel the same way you are feeling right now. I catch myself watching and taking in every little thing that h doees so that I don't miss anything and will be able to remember everything.

  123. hugs, dear Courtney.... keep praying... God will continue walking you through this pain and giving you the strength you need to heal .... and please for as much as you miss Tripp ... dont do anything you will regret later ....he performed his mission here on Earth so greatly... you must honor him and continuing performing yours just the same way and trust God knows when your time will come to see Tripp again.... I can't imagine how much it hurts... but please... dont do anything to yourself to get to Heaven faster... :/ ... my thoughts are prayers are with you!

  124. I have red your blog since last summer and every time I visit here I cry. You have a gift to write so beautifully and gently about your amazing son Tripp and about your love and about Father´s love.
    Many blessings! You are great!

  125. What a beautiful post. I have been following your blog and the way you have cared for and honored your son is inspiring. I am so sorry that he had to leave you. You are an amazing mom and your son left knowing he was loved more then anything in the world.
    God Blessed you with Tripp and I feel like you blessed me with a glimpse into his beautiful heart.
    Thank you.

  126. I've written and re-written my post over and over and i still cant put down in words what i want to say other than im sorry for what you and Tripp went through, what you are still going through and will continue to go through with out Tripp so very truly sorry. My heart aches for your Courtney and wish I could change things for you. Corrina xx

  127. I am so sorry for your aching heart. I shed tears for you Courtney. I wish I was half the mother you are. Thank you for sharing your heart with us. May God bless you with peace and healing and may you feel Tripp's happiness and love around you, for it is surely there.

  128. I agree Courtney. This does completely suck. It is unnatural for a mother and child to be separated. No glossing it over from me. It just sucks and I wish it weren't so. I wish Tripp were still here. I pray for your circumstances and your heart. Gosh I don't even know the right things to pray, but I pray anyway because this really, really sucks. :~{

  129. My heart aches hearing your pain. I pray that God provides you peace until you and Tripp are reunited.

  130. You are going through such normal stages of grief. Just let yourself grieve and don't put any pressure on yourself. These feelings will change in time and be replaced with other feelings. Know that you are loved by friends, family and strangers alike. And we are all pulling for you!!!! Thanks for sharing yours and Tripp's journey with the world. Embrace your memories and try to smile for Tripp! Love, Dean in Alabama

  131. My prayers are with you, Courtney. That little fellow was an angel. I admire you for being so strong and so so honest. Sending you a hug from N.C.

  132. Oh how I wish there was something we could do or say to take your pain away. I can never understand your loss or grief, but I hope you know that we all came to love Tripp. He (and you) have taught us all so much about life, love and faith. I feel like I lost a little piece of my heart too when Tripp left this world.

  133. Watching your son take his last breath, watching his heart beat for the last time. I know how that felt for me. I can't say I know how you felt because I'm not you. I can say that I understand and how blessed were we to have such terrific sons? How blessed were we to be able to say good bye? How blessed were we to tell our sons that we would be ok? I remember the night of his accident, sitting in the hospital room with Robbie, begging him not to leave me, crying, pleading with God. I believe with all my heart that Robbie held on for those 18 months until I told him that Lacey would be ok, that I would be ok, that it was ok to go. When he had that peace, he let go. May your love for your son and your incredible family and loved ones help you through these times. My heart aches for you my dear and I do understand. You put out there what I have not said. Thank you.

  134. I have been keeping up with y'all for a long time now and Tripp's story is very near to my heart. I have three babies that I love so very deeply and I know that my love for my babies was made even stronger knowing Tripp (even though I ever actually "met" him). A few weeks ago I found a little Elmo head (it fell off of a kid's plastic ring) at the park and I picked it up and put it in my pocket. When I got home I put it above my mirror in my closet so I always have a reminder of y'alls amazing love. My son noticed it the other day (he'll be three May 18th) and asked why I had it there. I told him all about Tripp and now every time he sees it he tells me about Tripp. Thank you so very much for sharing y'alls story. I pray for healing and peace for you. You are such a sweet amazing mom and I thank you for helping me to realize that the little trials in life are unimportant. God Bless you and your beautiful angel baby!

  135. Breath taking....just breath taking to read this. Honest, from the gut post. If only we as your blog friends and everyone else could for just a short time take your pain away. I would carry your burden for you with honor. I'm praying for you to find peace.

  136. "This can't happen fast enough." AMEN.
    I haven't lost a child, but have lost loved ones for whom I feel the same....I can't happen fast enough.
    You are so awesome for sharing "out loud" these thoughts and feelings. You and Tripp both have impacted my life so much...I don't know if it's enough to sustain you for me to say that, but I'm saying it anyway. I LOVE Tripp and I LOVE you. I have never met you in person, but wow....have you made a difference in my life. You'll never know. <3 I Thank You.

  137. Courtney, you are an amazing, amazing person, and a wonderful mom--I bet Tripp is bragging on you in heaven right now! I'd never heard of EB before I found your blog: if nothing else, you and Tripp have taught me about EB, and about how hard a family can fight for something! I wish you peace--lots of prayers and thoughts coming your way!

  138. There's nothing anyone can say to make you feel better. Just keep talking to God and he will help you. You are not alone, there are so many people praying for you out there. Just dont give up. And remember God does have your best interest in mind. You are his child and he loves you as much as you love Tripp. He will never give up on you and I'll continue to pray for you every night because thats the best thing I can think of to do. Just be honest with yourself, there's nothing wrong with the way your feeling. It would be more wrong to not feel that way. We all love you Courtney! Don't give up hope

  139. absolutely heartbreaking. your story is so powerful.

  140. I wish I had the right words for you. I cannot even begin to tell how sorry I am that you are having to go through all of this. Your beautiful little man truely has been an inspiration to me. My boys and I prayed for Tripp every night and continue to pray for you. God is with you and he will NEVER leave you. I know you know that, I just want to remind you. Even though you cannot wait till you are with Tripp again, I am so sure that Tripp wants you to live a full, wonderful, happy life. Just like you always wanted the best for him, he wants the best for you. I know none of this is much comfort to you right now. Just know you are in my prayers and you, along with Tripp, have made a HUGE difference in the lives of so many people! Thank you for reminding me, with you blogs, to love life and my boys to the fullest.

  141. There is nothing I can say, so I'm just not going to try....
    Courtney you remain in my prayers because I know only GOD can soothe your heart and spirit - so I'm asking Him to remain with you as you remain in Him. His love conquers death and therein lies beauty!
    Love to you Courtney!

  142. Courtney,
    I have wanted to post for I've silently wept for your pain. Before that I followed Tripp on his amazing journey as he and you touched me in a way that is difficult for me to put into words. Your momma perspective, your life of this amazing little man, your ability to be such an old soul in your maturity and reflection on the gifts God gives us, and just watching Tripp touch and leave his mark on this world... You have helped people to know more about the EB diagnosis and the pain that goes along with it, but also given EB such a human side as well....

    I can't express how much you have helped me love my babies, be a little more patient, be a whole lot more appreciative of the health that we have, and more patient on the days that seem rough... Thanks for being so amazing and sharing Tripp's story. Again... you help us all in a way you'll never know. Hugs to you and your family. Prayers for peace in your heart.

  143. Oh how my heart hurts for one should feel the pain you feel. You are one of the strongest women I've ever known about. You probably hear this a lot but I lost my mom last year and she LOVED babies. Shortly after Tripp went to heaven, I told her to find him and hug and kiss him all over. He is getting so much love until you're there to give him the most amazing love he'll ever know. As much as he wants to see you too, he wants to see you happy here on Earth. You'll get there, he'll help you and he'll watch you always just as my mama (and dad, too) are always watching me.

  144. Heartbreaking. It is just heartbreaking to read your words. I'm so proud of you for writing them though. I know you must get sick of people telling you how strong you are, but you are. What an amazing mother! He is a beautiful, precious baby and it is so unfair that you don't have him here anymore.
    The most poignant part to me of this post was what you said about parents being ungrateful. That is very eye-opening. Thank you for saying it.
    I don't know you but you are so often in my prayers.

  145. Oh you dear, dear girl...

    I know cliches can sound so empty & tacky at times, but I just can't fight this one off: It is better to have loved & lost than never to have loved at all.

    Courtney, you loved. You LOVED. And you did right by Tripp. You are awesome & there are so many people pulling for you.

    You dear, dear girl...

  146. Oh Courtney, thank you for sharing this. I'm crying now, and will give my daughter extra hugs tomorrow thanks to you.

    I will be thinking of you on mother's day.

  147. Courtney,
    Everything you wrote about, all the feelings and emotions you describe, how hard right now must be. When my sister died (I was 22 and she was 31) someone asked me if I was going to just go live in a cabin somewhere like Henry David Thoreau. (At the time I was pursuing my master's degree and was not sure if I would return to school to finish it.) I did not know what to do, or how to feel. I thought to myself after she made that comment, 'well, maybe I will.'
    I know you have probably heard this before and its so true, the emotions that you are feeling are so normal and so raw, it makes being human so painful. Live through each emotion that you feel and don't feel guilty or like you have to explain it. Get angry, get sad, get frustrated, you deserve to feel how you need to. Just make sure that you come out the other end of it. Keep walking through your grief and don't stop.

  148. How I wish I had any words that could really make you feel better. All I can say is that I'm more grateful for every second I have with my children because of you. I am praying for you.

  149. Courtney, My heart aches and aches for you as I read this entry. You describe your pain so graphically and yet even in your deep, deep grief - love comes shining through your words. The love you gave and recieved from Tripp was the most incredibly holy experience a human could ever have. Time and space do not contain Tripp physically anymore, but you must continue on in those dimensions, trying to fill that emptiness. I pray God helps you through each breath you take, each step you walk, each smile you force from your soul. Thank you, Thank you for sharing your sweet, precious child with us. You were so unselfish to do this. My life has been forever changed by that little man's smile and your descriptions and videos of him. Although I may never meet you, you are very dear to my heart and I pray for you daily. Much love to you and your family. Grammy's garden is vision of heaven would include such loveliness.

  150. God bless you, Courtney....Tripp could not have had a better mother than you. The pieces of your heart that are missing are being held as treasures by your little angel until you reunite--they aren't gone forever. Much love to you and your family.

  151. You are so courageous. You are so strong. Let yourself have those weak times. Let yourself cry. Stay in bed for a full day (NO LONGER THOUGH!). Let yourself heal. Obviously, I have NO idea what you are going through. But I still worry for you, and I feel for you, and I love you! (And I've never met you or talked to you!)You and Tripp have touched SO many lives. I know you will get through this! <3

  152. My heart continues to ache for you. Be ause of you, be ause of this post and many others, I will hug my kids a little tighter, have more patience with them, not take a single day for granted. Thank you for that. You are in my prayers...

  153. Courtney,
    I know that there are no words that I could say to take your hurt away. My heart is breaking for you. You are an incredible mom and such an inspiration to so many. I wish I could take your pain away but I can't. Like you said our goal now is to make Heaven our home so we can see our Angels again and I'm not giving up. I'm too close to home now to give up. Praying for strength and peace!!!

  154. Crying with you! I have not commented on your blog in a while and there are reasons that I am not really sure of. I just knew that it would be better for me to remain in the background and be quiet and check in on you, and Tripp, and your family. I had thoughts and I had prayers. I knew God had already taken care of everything past, present, and future...., I knew before Tripp left that it was going to be extremely hard on you. The reason is is Tripp took what you gave him with him. You gave him everything he needed for his Tripp to Heaven. He has it with him now and forever and always. He has everything he needs. He has you his mother with him for eternity. He is embraced in your motherly arms intensely magnified in Heaven by the God our Father. You are already there. You gave that baby your motherly soul completely in everything you did with him, for him, to him while he was here. That part of you has gone with him. Tripp is perfect and happy, and to him it's like you never left, and I do not think he would have left without you eb or not. It's just hard for us to have to let them go. Praying for you and your pain and grief and for you to be comforted. I do not see you as being selfish in any way. I just see you as a hurting/grieving mother who loves and misses her child very much and rightfully so. I miss Tripp too...he always put a warm, bright, special smile on my heart, especially when he played those drums!

  155. Thank you for this post. I'm totally speechless and can't stop crying. You are such an amazing woman and Tripp was a gift from above. I always come back to read your posts even if they make me cry every time. I'm so sorry for your lost, Courtney. I wish I could say something wise. My heart hurts for you.

  156. Read this with sobbing tears, again. Bless your heart. I love his garden. . imagine the one he has in heaven!

  157. Courtney,
    I am so sorry you had to go through all of this and lose your sweet boy, Tripp. Such pain and suffering for all of you. Thank you for explaining this. Please continue to write and get it out.

    You have a deep community of love here and I am so honoured to be a part of your online support.

    Praying for you dear, keep looking up and seeking the face of God. He is shining on you.


  158. It's the busiest day in Heaven
    I'm planning a big surprise
    To let you know I love you
    And that no one ever dies

    Even though your down below
    And I am up above
    I'm sending you my wishes
    And all my angel love

    It's really quite exciting
    To plan this big event
    For lots of gifts will come your way
    And all are Heaven sent

    First I'll take a bubble bath-
    My splashes might cause some rain
    But knowing all the fun I'm having
    Will help to ease your pain

    Next I'll get some pictures
    In my halo and gown
    So when you get to Heaven
    You can show me all around

    I have color crayons in Heaven
    And I will draw some stars so bright
    And place them in the sky today
    For you to see tonight

    Then Jesus will have story time
    And I will sit upon his lap
    He'll tell me all about you
    Just before I nap

    I'll awake full of energy
    And play a game or two
    Before I finish sending
    All my love to you

    After snack I'll write a song
    For all the birds to sing
    And know I've made you happy
    With all the joy it brings

    At night time I'll be tired
    But I'll still hold you tight
    My arms will wrap around you
    And keep you through the night

    And when you finally slumber
    I will kneel and pray
    Asking God to bless you
    On this special Mothers Day

    Your Little Angel

  159. Thank you so much for this post, Courtney! I needed to hear it. We have a 13 year old son with ADHD, and the teenage attitude and hormones that go along with it. It has been a tough year in our house. He and I have constantly been at each other's throats. After I read your post, I went and gave my boy a huge hug and told him how very, very much I loved him and that even though I wasn't always proud of the way he is choosing to act and be right now, that I am so proud and grateful that he is my son. He hugged me back and said that he loved me too! Things this morning were smooth and peaceful. He kissed me goodbye before he left for school. I told him I loved him again. So, even though you wish you weren't here, I do think God has things for you to do here on this earth, whether it is helping a tired, frustrated mom like me see the blessing that her son is,helping another mother who has lost a child, helping raise awareness for EB, or bringing someone to Christ through your strong faith. So, hang on, sister. There will be joy in your life again. Here and now on this earth as well as in Heaven with Tripp. The heavenly Father will make sure of that. With all you've done as a good and faithful servant, and all that Tripp has done, God will see you through this. And on the other side, there will be joy. For you, for your family, and as we already know, for Tripp. Thank you again. Hugs.

  160. No words really. Just tears and, of course, happiness for you.

  161. if only people could really 'get' how precious life really is, our world would change forever. thank you for sharing your heart, courtney. my thoughts and prayers are with you.

  162. Courtney,
    I have followed your blog for a long time, sometimes smiling at your sweet boy, sometimes shedding tears, and sometimes I must admit that I have railed at God for allowing His precious child to suffer so much. I haven’t written before, but I have to write now. I lived through an experience of horror, and learned some painful things along the way. First, there is not a ‘right’ way to survive and move forward. You have to do it your way. And for me, that was a forward/backward spiral. It is funny, but after the immediate period of sympathy and concern, people’s lives got back to normal and they assumed mine was too-but I knew my world would never be ‘normal’ again. Someday, you will feel absolute joy, again, when you whole sweet Tripp in your arms-whole and well, and talking up a storm! Second, I learned that time will ease the intensity of the pain-the ache never goes away. But, I also know, with all my heart, that the greatest gift you can give Tripp is to live every moment of life to the fullest! Do and experience all the things that he missed-hug and love all the people he loved. And, maybe, when you are ready-give him siblings and shower them with all the love they deserve. That is the greatest gift you can give your ‘little man’ who loved his mommy so much-you write of how sensitive he was to your moods and feelings-I think it would give him JOY and comfort to know that your heart aches for him, but that his life did not destroy your life. He taught you so many lessons-let him teach you this one-Life is to be lived-no matter what the pain-drum when you can, rock when you can’t-but don’t give up. Courtney I weep for your sadness, but I admire you for your strength. Take as long as you need to mourn and grieve-but don’t give up. God will carry you until you can walk again. Love to you. Linda

  163. This was absolutely beautiful. I've been following your blog for quite some time and I've never commented. I wanted to tell you that this is perfect, I now have a better understanding of what your life with Tripp was like and, sadly, what your life without Tripp is like. Thank you also for making me appreciate my son more. Things have been difficult in my life lately and I've secretly and shamefully said my life would be easier without him, but it wouldn't be. He is my reason for living and why I keep going. Tripp was a very lucky boy to have you as his mother, not everyone is built to be as strong as you.

  164. Courtney, We all know what a special little boy Tripp was, because you shared him with us. I feel fortunate to have followed your story for so long, blessed that the miracle that was Tripp was part of my life for two years ... even if only virtually. I feel like I know you, through your relationship with Patrice, and she holds you in such high regard that I know you are one of The Good Ones. My prayers and thoughts are with you.

  165. God bless you Courtney. God bless you. May He bring you peace and consolation. You are filled with grace.

  166. Courtney, your post made me cry as hard as I did the day I found out about Tripp and that he had died from such a horrendous disease. What I would say is nothing different than what everyone else is saying so I won't say much. I pray for you daily and I thank you for sharing Tripp with us. I love you and that boy dearly. I have never felt so much love, care, and compassion for someone I have never met before. I pray for comfort during this time for you and your family. Did I mention Tripp and my son have the same birthday? Instead of lighting candles in my son's honor, we will be lighting a candle in Tripp's honor as well.Thank you for sharing with us.

  167. Oh Courtney, that was so intense, and moving, and sad and emotional and so many other things too hard to describe. Thank you for letting us into your life at such difficult time. I think of you often and pray for your healing and peace, no matter how long it takes to come. I am so glad you have your family close to support you and grieve with you and remember all the wonderful smiles and love Tripp gave you all.

  168. Tears for you Courtney. He was a sweet, wonderful little boy. My heart aches so much for you.

  169. I'm not going to sit here and feed you a bunch of bullshit you probably get from well-meaning people all the time about God's plan, everything happens for a reason(which I happen to vehemently disagree with), God's perfect timing, blah blah blah. This crap made me mad when my dad died of brain cancer 4 years ago. I know that at some point in the grieving process, this stuff helps and comforts, but I don't know where you are. I know that losing my dad can't come anywhere close to losing my child, so I can't even pretend to understand what you are going through. I do want to say that your sentence about parents being ungrateful for their children resonated with me today because that is how I have felt this week. Ungrateful, aggravated, annoyed and irritated with their constant fighting, noise and defiance. Thank you for reminding me of what I have, and that I should be grateful.

  170. That thing you said about God probably being as confused as you were?

    Y'know what I think God thought? I think He was right there with you in those times, by your side, arm around your shoulders, saying "I know, Courtney. I know. I understand. My heart breaks as much as yours does. For I watched my son suffer too." He understands. And He understands where you're at right now. And He knows what the future holds for you. But if the present looks like what it does for you right now, that is okay.

    Continually praying for you. Thank you for still sharing your journey with us.

  171. Hi Courtney and Family:

    Courtney, this is one of my favorite entries of yours for a few reasons: it is so honest, you have once again reminded me that God does amazing things (like waking you up at the exact right time) and I believe, I do wholeheartedly, that you will experience real joy again.

    Like many of your readers, we are amazed at your journey and strength. And, I don't mean strength by putting on a happy face, I mean strength by sharing some personal details of your life, experiences and feelings.

    I know Tripp's birthday is on Monday and I am praying that on that day (and all days) you feel Tripp's love for you, engulf you and make you feel that he is with you!

    Joanna, Joseph and Jude
    Madison, WI

  172. Courtney,
    I hope, and I bet they have, that someone has told you that they are proud of you! While reading this post, that is what I was thinking, how proud I am of you for sharing your feelings and making it through each day. There is no way that I could understand your pain, but what I can do is encourage you. Keep going! Just take things one day at a time, and if that's too much, one hour at a time. And take comfort in the fact that you will see Tripp again! I am praying for you, and will offer up several prayers on the day of Tripp's birthday. I know that that day is going to be really tough for you, but remember to lean on your family and friends, and of course, us: your readers:D

    Sending lots of loves and prayers from South Carolina,


  173. Courtney - I am praying for peace, acceptance and happiness for you.

  174. Your pain and grief are unimaginable, but thank you for putting them into words for us. I treasure my baby each and every day, and all the more because of what I have learned from you and Tripp. I pray for you every day, asking God to give you moments of comfort and strength, and that those moments become longer and more frequent as time goes on.

  175. Tripp is one of the most beautiful babies I have ever seen, I look at his pictures and think how gorgeous he was. I think about you and your journey with him often, prayers to you, you are a beautiful and strong woman.

  176. i showed my husband your blog and we read it together, and cried together. we have chosen not to have children, but had we, i would want to be the kind of mom you are.
    heck, i want to be the kind of WOMAN you are.
    i admire every word you put on the page, the courage it takes you to put them on there, and the honestly that pours out. you make me see life far different than i have the past 28 years of my life, and for that, i thank you..
    your courage is what makes many, many people able to go forward in their everyday life problems, along with the trials that seem far bigger than what can be handled...
    i wish i could hug you, sit next to you, and just be. i know loss, maybe not on the level of yours, but i know the feeling of just not being ok. one day, then the next, life will seem LESS sufficating.
    i dont know how to end this, other than to say i love you, and think about you often. thank you again for your honesty and all the passion you put into showing the world how amazing Tripp was.

  177. Courtney, I stumbled across your blog last year while I was pregnant with my first child. Something kept me coming back. All I can say, is you are such a strong person and Tripp was so lucky to have you. I pray for peace for you in your continued journey. At least you know that Tripp will be there waiting for you when it's your turn to go to Heaven. Tissy

  178. Happy Mothers Day to an inspirational woman! You are one of a kind! I hope your sadness and pain ease up a little sooner than later because the world needs more woman like you. If you are crying and not getting out much then we won't be able to see all the other things you can and will do to honor your precious son. No one wants to see a special mom like you feel like how you described ( and trust me everyone understands) but I know for a FACT that your brave son would want you to live your life and be the wonderful woman you are. He is loving you from heaven and saying........."Mommy don't be sad, you love me and I love you and nothing can take that away from us!"

  179. Dear Courtney,
    I found your blog over a year ago and faithfully prayed for little Tripp. Tonight i was thinking of Mother's Day and I thought of you and what an incredible mom you were to your very special little boy. I thought I would stop by and see how you were doing. Your post was heartbreaking and honest. I think about heaven a lot and about all that God has promised us as believers. I look forward to meeting Tripp someday. Until we are all together in heaven, stay will continue to be in my prayers.

  180. hugs hugs hugs. i empathize when it is gut wrenching to see people in public who have no idea what a gift their children are. i've been given 2 beautiful years with my daughter and it is more than i ever would have imagined. life is so precious. love & light to you.

  181. As I sit here trying to come up with the words to say, I have tears running down my face. Today I was in Walmart and my mom (whom I shared this blog with) and I saw an Elmo doll and remembered Tripp and we talked about him. You don't know me or my family,, but you are such an inspiration to me and my 5 year old daughter. We have followed this blog since Tripp was a year old, and Maddy (my daughter) would say at random times "Mommy let's check on Tripp...let's see what he's been doing". She bought him and Elmo, and we didn't get the chance to send it before Tripp went to Heaven. If you'd still like it, we'd love to send it to you! You have opened my eyes to what it's really like to be a REAL "mommy" not just someone they call "mommy" Tripp, as well as you will forever be in my heart! (and my daughters who still asks about him) YOU are AMAZING and sooo incredibly strong. I thinl you should think about writing a book for your own healing as well as remembing Tripp and his struggles. You are an amazing writer! You have brought so much inspiration to my family, and that we are forever grateful for. AND as I sit here through tear filled eyes, and miss Tripp, I can on;y imagine what you are experiencing. My daughter prayed for Tripps healing and now when she prays she tells God thank you for healing Tripp, but I wish I could play with him. Thank you for giving us such a beautiful son!!! You gave the world one of the best gifts you could have, a sweet baby boy who showed us, courage, hope, love, and sooooo much more. I don't think, you are thanked enough.

  182. Courtney, you are such an amazing mom. I am so sorry for you loss. It breaks my heart. It would have been an honor to meet Tripp. What an amazing sweet and loving boy he was. May God continue to comfort you. And please by all means keep posting away your love, grief, thoughts, and memories of your little boy. He now lives in my life too. And I know he is smiling down from heaven playing his drums for you.

  183. I know today and tomorrow are going to be especially hard for you Courtney. I made a donation to The Butterfly Fund in your honour for Mother's Day and Tripp's 3rd Birthday. (((HUGS))) to you.

  184. Happy Mother's Day. We who have children in heaven are still mother's and deserve that recognition. My son never took a breath of life, but he is still my son, and I am still a mother, as are you. I don't understand your pain because I've never had your pain, but it is yours and therefore whatever it is, it's right and legitimate. You get to feel what you feel! But I can tell you this...Tripp is not anxious for you to join him. He's safe and happy and pain free, and that is what he wants for you. You and he will be together for eternity. I can understand your intense desire to be with him now. My darling girl, you have a life to live. When the time is right for you, and not until then, you will begin living your life and I pray for that day. You've earned a happy life, maybe a husband and more children...maybe a life of service, you'll know when the time comes. Until then, let those of us that have come to love you every ounce as much as we have loved Tripp support you through your devastation. If you will let us, we will hold you up when you can't do it for yourself. Our prayers for you are pouring into heaven. This may make you want to punch me, but there is truth in the saying, 'this too shall pass'...meaning the deep devastation that keeps you paralyzed right now. The rest will live in your heart forever and you will never lose your pain or your joy memories of Tripp. Hang on darling girl! We will carry you until you can walk on for yourself!!!

  185. Courtney, there are no words that will comfort you right now, but I am crying with you and feeling your pain. Reading your posts have been enlightening for me and I feel myself being drawn back to a closer relationship with God. I admire the love you have for your son and reading your posts made my longing for a child of my own even stronger.

    I took a leap of faith and put my trust in God and 8 weeks ago found that all my dreams have come true and I am at last (at the age of 40) carrying my first child (having longed for over 20 years for him/her).

    I will be raising this child alone, but I promise that I will love my child like no other, I will never take him/her for granted and will devote the rest of my life to showing him/her how much he/she means to me. I don't think I would ever got this far without reading your posts, the love, strength and faith you have are commendable and inspiring. My life has changed through reading your posts, I'm only so sorry that your words come from so much pain and that you are now bereft of your baby. If I could turn back time for you and lay your precious son if your arms, EB-free for you I would. I'm glad you have such great memories of Tripp, may these carry you through life, giving you strength and one day (but not yet) you will get to play in heaven with him, the two of you living a much happier, drumming and singing Elmo songs all day, surrounded by butterflies and warmth from the sun. Your baby will wait for you, as long as it takes, for love is patient and love is kind. Love for you Courtney xxx

  186. You can be proud that you took the best care of your little man. I wish you peace. He would want you to try and be happy. You help me to be a better mom everyday. Thank you for the inspiration and for the help recognizing what is important.

  187. Hi Courtney,
    Do babies gets blisters/sores only in/after the birth?
    I have wondering.... Babies are moving and touching themselves in the womb, right? Should their body be covered by blisters/sores?

  188. Happy Mother's Day to the best mom I have ever "met". Also Happy Mother's day to your mom..the best grandma. Two women absolutely deserving of aknowledgement on this special day.

    Love from my family to yours.
    (Near Niagara Falls, Canada)

  189. Courtney - a special Mother's Day hug for you today.

    Please, never feel like you can't share what's on your heart. Even though we've never met you, we want to support you. As long as blogging helps you through the pain, we will read and encourage you. Bessings upon you.

  190. Courtney,

    Thinking of you today and wishing you a happy Mother's Day. I know today won't be the same without Tripp but I hope you still have a good day. I know Tripp is smiling down from heaven and hoping you have a very happy day today. If he could talk to you today I have no doubt he would be thanking you for taking such wonderful care of him and being an amazing mother to him. My thoughts and prayers are with you today.

  191. Courtney, thinking and praying for you everyday and especially today. Thank you for sharing yourself time and time again with us out on the web. I am at a loss of words. Just know that you are never truly alone. Even in the middle of the darkest night there are people praying for you. Keep writing Courtney.
    Kelly Dudzinski

  192. Happy Mother's Day Courtney. Thinking of you today more than any other!

  193. Courtney,

    My name is Jennifer. I am 38 with RDEB, Inversa. We have never met but I have followed your and Tripp's journey for the last year and a half.

    I wish there was something, anything, I could say to help fill the void I know is inside you. I do not have children, although I love them dearly, and I do care for them, mostly special needs kids and like you said, they are a blessing and I love and treat every child I care for as if they were my own.

    To bear a child is a blessing and a privilege. I don't know if I will have my own children. I don't know if that is part of this life's journey. When I look at a child, any child, I see the potential within them to do amazing things! With the proper guidance and encouragement, love and respect any child can achieve anything! The key is that they count on us to show them the same unconditional Love and respect they already have for us. Every person is born with this understanding and it is up to parents to care for their kids so they are able to keep that spark of unconditional love and carry it with them through life and into adult hood so they can then teach their own children that with Love all things are possible, no matter how daunting the task ahead of you looks, with that knowledge and understanding of unconditional Love, ANYTHING IS POSSIBLE!

    With every word you write, THAT is what I hear. I hear that never ending, unconditional Love pour from you and while I know you ache with every fiber of your being with the loss of your precious son, I know that you, and all of us, will be forever changed by him. I know that when you look at another child or person or 'situation' you will do so with eyes and a heart that are forever changed by the Love you shared with Tripp. Whatever situation you encounter in life you will see it with renewed purpose and a better understanding of the true nature of the human spirit.

    It is so easy to get lost in grief and blame God or take our fury out on those around us because many simply don't know how to handle their sorrow. I am strengthened, and humbled, by your words and your unyielding Spirit.

    You said, "people can tell me all day long that I have a purpose and I will do great things for EB." I can tell you that, without trying, you already are and you're doing it by just being YOU. Sharing your journey and feelings with us is such a blessing! I am so grateful that you have been so generous by inviting us into your and Tripp's life and allowing us, in a way, to learn from you both, share in your joy and surround you in prayers through your sorrow.

    We, as women, are genetically engineered to do everything we can to save our children and if, for whatever reason, we are not able to hold on to our children as long as we hope to then we are left with an aching void within us, and the effort of simply putting one foot in front of the other every day can seem so daunting. Why should you have to stay? Because we need you. I know that is selfish but we NEED to huddle next to the roaring flame that is your Love for your son so we can continue through each day with the reminder that life is precious and that we should never take it for granted. So that we never forget how important it is to slow down and pay attention to what's truly important.

    Please know that you, Tripp and your family are always in our thoughts and prayers and we are forever blessed for having you both in our lives.

    Hugs, Love and Light,

    Jennifer (Lyric)

  194. I know families are reunited in heaven. And those reunions will be joyous. But YOUR reunion with Tripp someday will be UNPARALLELED!! I know you are so grateful to have learned from him and loved him. And I KNOW he will be so excited to tell you of his gratitude for your selfless service to him. And to tell you he loves you! I can only strive my hardest to gain as strong of a bond with my children as you already have with Tripp.

    I know that you may have to wait longer than you want to see him again. But that perfect little angel is cheering you on! He believes in you. He can't wait to see who you become through all of this.

    I know that no matter how many people tell you you are brave or strong, you probably don't feel it right now. Maybe you even feel weak or helpless. Please, please know that despite your grief you honestly are a source of strength and inspiration to so many. We love you. We love Tripp. We ache for you. But we believe in you too. Just like Tripp does.

    Love and Prayers, Kimberly

  195. I'm so sorry that your feeling the pain that your feeling. I too lost a child. my daughter was 4 1/2 months old when I lost her to a tragic that I never saw coming, and once I wish didn't happen and I still had my babygirl. the feelings you write, are exactly what I feel, but could never find the words to explain. I'm one that hides my feelings and doesn't show emotion.. i wish I could be more like you. after folling your post for over a year, my only question I have is where is Tripp's father? I understand you two aren't together but did he ever see Tripp? was he around for the services? you could email me or possibly post it in your next blog. please stay strong. Tripp has such a wonderful Mommy <3