Monday, January 14, 2013

One Year...

Today cannot be real.  
I wish it were a bad dream.  
Today was the day that I never actually thought would get here.  It's a day that that has haunted me since the day he left my arms.  
I told myself (and countless others who asked) that I was going to give myself a year after Tripp passed away to organize my thoughts, and then decide what I was going to do with my life.  
A year seemed like an eternity... that's why I said that.  
And now today makes one year... and if it's possible, I think my heart may be more broken today than on the day he actually went to be with Jesus.  The shock has faded and reality is BANGING at my door.  That's what I get for always trying to be in control... for giving myself a timeline to heal the loss of my child.  A timeline is not possible.  

It's been a whole year since I've held him in my arms.  
A whole year since I've kissed his lips.
A whole year since I leaned close and told him I loved him.
It's been a whole year and I still don't understand why he's gone.  I still can't comprehend why other people get to keep their babies and I didn't get to keep mine.  
He was my world.  My heart.  My everything.  
And now he's been gone a whole year.  
Where did it go?   

I can't kiss those big beautiful, plump lips...  






I can't look into those big gorgeous brown eyes... 







I can't hold that sweet hand, or rub and kiss my favorite little feet...




And what breaks my heart the most of all, 
is that I can't see that beaming, glowing, amazing SMILE
that he gave me for 2 years and 8 months.  



 

                                       
























I can't hold him in my arms, or rock him in our favorite chair... 






I can't play drums with him anymore, or sing Elmo, or dance... 









I can't comfort him anymore like a mommy is supposed to do. 
Instead, I have to trust that my baby is with Jesus in Heaven, and that he will never need comforting again.  And it's not fair.   



My heart is broken into about 4 million pieces.  
And I know that I will never ever be able to get that one piece of it back.  The piece that made me the happiest girl in the world.  The piece that finally made me complete. 
 My baby boy... who is now my little angel. 

Dear parents (whom I know or do not know) who have ever lost a child:
I am so so SO sorry that before January 14, 2012, I have had NO clue and was totally oblivious to your pain.  Because there is no pain like it.  There is no way to describe it.  There is no way to make anyone ever be able to understand it, whether they have kids of their own or not... or whether they are a part of your own family or not.  No one will never understand... unless they have lost a child themselves.  And I'm so sorry for that.  And you have beaten yourself up mentally trying to get them to understand.  You can't understand why their lives can go on.  How they can be so happy and so care-free when your life has ended and your heart has been ripped out of your chest.  It isn't fair. And it isn't their fault.  I try to picture myself before having Tripp.  I think of how I might have acted around someone who had lost their child.  Would I have said, "Oh hi, how are you?"  And did they roll their eyes at me and think to themselves, "How in the *bleep do you THINK I am??"  Or would I have had a conversation with them and totally ignored the fact that they had lost their child?  Or never mentioned that I was sorry?  Did I actually do these things with women I knew who had lost children?  I don't know.  Because I couldn't possibly have understood before now.  I couldn't have understood what it would have been like to give birth to a human being, fall desperately in love with him or her, live my life for him or her, and then have them taken from me without explanation.  Everything you love in life- things, people, possessions.... will NEVER compare to the amount of love a mother has for her child.  Never.  EVER.  I don't care what anyone says.  So, I truly do want to say that I'm sorry.  I am sorry that you feel alone.  I am sorry that you have to think about the death of your child all the time when most people don't remember.  I'm sorry that you have to have Christmases and holidays and birthdays without your child.  Because now I know what that feels like.  And I would rather someone beat me unconscious every single day of my life than to have to feel like this. 
Please know that I feel your pain... and that you are not alone.

The pain I feel isn't about "understanding why this happened" or "being mad at God."  The pain is simply just MISSING HIM.  It's a physical, gut-wrenching, nauseating pain knowing that you can't hold your baby.  Or hug him.  Or kiss him.  So people that say it will be okay and that I "will be with him again one day," don't understand that I know I will be with him again one day... but that it's NOT okay.  Nor will it ever be okay not to be able to be with my baby.  It's not supposed to happen that way.  I'm supposed to go first.  Will I cope and live normally?  Yes.  But it will never be okay that my son is not here for me to hug.  That pain of missing him will never go away. 
I hope and pray it gets easier... and that I can see and play with other kids without having that gut-wrenching, guilty feeling the whole time.  
That is my constant, daily prayer to God... Peace in my heart.  
Peace to comfort my broken heart. 

My parents have been a greater support to me than I could have imagined.  And I guess now that I know the feeling of loving your child, I understand more how much they must love me.  My heart hurts daily for my parents.  Tripp was their first grandchild.  And also had to suffer this past year, watching their friends and siblings with their grandkids when they didn't have theirs.  I know how much they wanted grandkids and how excited they were when they found out I was pregnant.  And I know that it's a different pain than losing your child, but I can imagine that they hurt for me, as well as hurt because they miss Tripp, too.  And my sister, who just had a sweet baby boy of her own and lives states away, always manages to stay in daily contact.  She will always be my best friend, and always always there when I need her.  
I am just so grateful for the never-ending, unconditional love and support of my family 
(especially on the days that I'm a complete witch).
I could have never ever survived those 2 years and 8 months without my mother. 
 That's a fact. 
I'll never be able to re-pay her for all she's done and continues to do for me. 
Best Mom Ever.

I am also overwhelmed with the blessing God snuck into my life 2 years ago. 
I knew from the moment Stephen came into mine and Tripp's life, that he was a great guy.  But with me being so hurt and mistreated in the past, it took me a little while to be able to appreciate the man that he really is.  And when I finally did, Oh, can I tell you how good that felt?  I finally have a real man.  I finally know what it is like to be loved unconditionally.  I feel what it is like to actually be comforted when I am sad.  I know what it feels like to have someone believe in me, and want to be a TEAM- by working together every day to make our relationship better than it already is... not just using the excuse that it's hard.  We have learned so much from each other.  I believe God saved Stephen for me.  I truly believe that.  And I thank Him every night when I lay my head down on my pillow.  This month also makes 2 years since Stephen and I started dating.   Starting two years ago, almost every single day, he would come home from work, come over, and sit on the couch behind the rocking chair... for hours.  And just hang with us.  Never getting "bored" or never letting on that he wanted to be anywhere else.  Always being perfectly fine with the fact that I couldn't leave the house or that we never got to be alone.  He was so patient.  He took to Tripp so wonderfully.  He jumped right in, with both feet.  I remember how nervous I was the first time Stephen came over to meet Tripp.  I wasn't sure how he would act or what he would think.  But he sat on the floor in front of his toys, and started playing with him like they had been best buds for years.  The little drops of blood from Tripp's fingers when he would accidentally play too rough, never once bothered Stephen.  And it made my heart melt.  And since then, he has been the glue that has held me together.  He would help mom and I with Tripp's baths... and just stand by our side for hours while I bathed him... handing me supplies as I needed them.  He's shared my tears, my smiles, my meltdowns... and most importantly, he shared in my son's life.  So he actually got to know and love a piece of my heart outside of my body... for an entire year of his life... which has been SO important in our relationship and being able to understand what we went through.  He has held my hand through it all.  He treats me better than I even deserve sometimes.  
And I get to become his wife... I am a lucky, lucky girl. 

God has also shown me how active He's been in my life by the friends He's sent me.  I haven't figured out if they are angels yet, but I'm pretty sure one of them curses way too much to be an angel... just kidding, Amy!  (those of you who know Amy, understand that :).  I met Amy through Ch.6 news when they asked me to do a story.  Since then, she has texted me every single day (never ever missing a day) to check in on me.  She has been an amazing friend.  If I don't text her first, because I'm having a crap day... you can always bet she is going to text, even if just to say "how was today, my friend?" A simple "how are you" and acknowledgment that I'm hurting means so much these days.  And I can always count on it from her.  Well through my friendship with Amy, I met Jenn Lormand, who I told you owns Ascension Fitness in Metairie.  I have been working out with Jenn on and off for about 6-8 months now.  Jenn is amazing.  She has been an amazing friend and such a huge part of my healing  process this past year.  Well Jenn... being the one who is always wanting to do something to help me... just recently introduced me to another woman who works out at her gym, named Erin.  Erin lost her precious son to an accident when he was 14 months old.  It has been 7 years, and she has since then had 4 more children.  She is amazing.  She is exactly what I hope to be in 7 years.  This friendship that I am just starting with her, is only one that can be sent by God.  She's exactly what my broken heart needs.  Someone who I can relate to.  Someone who can say, "I know how you feel" and actually REALLY know how I feel.  I can tell her anything.  I can tell her that I lay my head on the pillow sometimes at night and pray that my heart stops beating because it hurts too much.  And she understands the pain.  She checks in on me regularly, and offers to get a sitter for her children so that we can have lunch.   Or she will just text to check in and see how I'm doing.  I am more grateful than words to have her to talk to, to cry to, or to laugh with (without feeling guilty about it).  So it just shows, how God put Amy in my life when Tripp was a little over a year old, to be the friend I needed, and then Amy lead to Jenn in my life at the time I needed to pull it together, and then Jenn led to Erin into my life at the perfect time, when God knew that I was at the end of my rope and couldn't handle it on my own anymore.  He knew I needed someone who had been in my shoes.  And that before now, I was too hardheaded to ask for help. 
I don't think this "chain of friendship" was a coincidence. 

God knows.  He listens.  He is present.  And He is GOOD.  He had my life planned out from the beginning.  He knew everything that would happen.  And He knows everything that is going to happen.  I just have to remember to trust Him.  So my goal this year, is to TRUST HIM.  Through the pain, through the heartache, through the torture of every birthday and holiday... through the days when I feel like giving up, I want to remember to trust Him.  It will by no means be easy.  But I believe the only way that I'm going to find some peace... is by building a better relationship with God.  And that relationship begins with trust

And I am, AS ALWAYS, overwhelmed by the continued support of all of YOU.
All of you wonderful people who have followed our story, 
who have prayed with me and for me, 
and who are still supporting me a whole year later... 
I love you.  
And I am so thankful for you. 
I'll never be able to say that enough. 
Thank you for the mail, the letters, the gifts, and the kind words.
But for most of all, continuing to remember my sweet boy. 
And continuing to raise awareness about EB so that one day no one will have to suffer from it.  
Thank you...
from the bottom of my broken heart. 

    


 Love,
Photobucket

168 comments:

  1. God bless you Courtney, You are in my prayers always- but especially today. I cannot even imagine the grief, but your testimony of all the good in your life that helps sustain you is powerful. *hug*

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  2. My heart breaks a little Everytime I think about you having to witness your baby struggle so much... And then let him go. I found this beautiful & fitting. I don't know you, personally, Courtney, but I thank God for you & your family & Tripp. And I HONESTLY LOVE YOU!
    Letter to grieving parents adapted from Ram Dass


    Dear COURTNEY & family,

    Tripp finished his work on earth, and left the stage in a manner that
    leaves those of us left behind with a cry of agony in our hearts, as the
    fragile thread of our faith is dealt with so violently. Is anyone strong
    enough to stay conscious through such teaching as you are receiving?
    Probably very few. And even they would only have a whisper of equanimity and
    peace amidst the screaming trumpets of their rage, grief, horror and
    desolation.

    I can't assuage your pain with any words, nor should I. For your pain is
    Tripp's legacy to you. Not that he nor I would inflict such pain by choice,
    but there it is. And it must burn its purifying way to completion. For
    something in you dies when you bear the unbearable, and it is only in that
    dark night of the soul that you are prepared to see as God sees, and to love
    as God loves.

    Now is the time to let your grief find expression. No false strength.
    Now is the time to sit quietly and speak to Tripp, and thank him for being
    with you these few years, and encourage him to go on with whatever his work
    is, knowing that you will grow in compassion and wisdom from this experience.
    In my heart, I know that you and he will meet again and again, and
    recognize the many ways in which you have known each other. And when you
    meet you will know, in a flash, what now it is not given to you to know: Why
    this had to be the way it was.

    Our rational minds can never understand what has happened, but our hearts
    – if we can keep them open to God – will find their own intuitive way.
    Tripp came through you to do his work on earth, which includes his manner of
    death. Now his soul is free, and the love that you can share with him is
    invulnerable to the winds of changing time and space. In that deep love,
    include me.

    In love,
    Rikki Moore Hurston
    Baton Rouge, LA

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    1. Courtney read this and re-read this reply from Rikki Hurston......it is your equal understanding in faith, the gift of faith given to you.

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  3. thank you so much for sharing the memories and pictures of Tripp. I can't help but smile when I look at his happy little face and those big beautiful eyes and yet I am overwhelmed with sadness for you because I cannot imagine how difficult it must be to miss him so terribly.

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  4. Courtney - My heart is broken for you!Even though I never met Tripp, I feel like I knew him (thanks to your wonderful blog) and I think of you and him often and pray for you both each night! You are a living example of what love should be; thank you for sharing that with all of us!
    Blessings!!
    Kelley

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  5. Loving you, hurting with you, praying for you, remembering Tripp today and always....

    Holly
    www.seekingfaithfulnessblog.blogspot.com

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  6. Beautiful! Reading about Tripp still brings the tears, but I am so happy for you with all the good things going on in your life now too.

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  7. Praying for you everyday. I am so sorry for the pain you have, I cannot as a mother even begin to imagine. May God bless you and wrap his arms around you. Your beautiful little boy has touched my heart forever.

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  8. My continued prayers are with you. Thank you for inspiring me to be a better mother and to not take one day for granted with my children.

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  9. Still praying for you. Your writings always inspire me to be a better parent to my kids. God Bless!

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  10. Nothing I can say can make you feel better I know this, but I hope this hug I send you can bring some relief.
    Imagine how many moms, reading your words, give their kids some extra kisses or cuddles or time, because realize how precious any moment with them is.
    It is not the same as if you could do it, not even close, but your words, coming from your broken heart, make this world a better place every time your heart speaks.
    XIz

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  11. Prayers for you and your family! I can't imagine your pain....I have followed your and Tripp's story and think of your little guy often. God bless!!

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  12. I pray for you all the time. I pray for you to have peace. You are so strong. My heart breaks for you and I think about you & Tripp often. Thank you for always being so open & honest with us, it is amazing. I'm so glad God brought you Stephen b/c you are amazing person who deserves to be cherished & loved.

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  13. Courtney, You are remarkable. You are generous. You are loved. You are so special. God blessed us with you and Tripp. I am in awe of the example you and your family set for the world. Love and trust are so important in life. I've kept up with my prayers for you and your family, also for other parents and children who living with EB. Thank you from the bottom of my heart for sharing Tripp's life with us. God Bless you and keep you. I'm wearing red for Tripp today. I know from my faith that Tripp is smiling down on you from the arms of Jesus.

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  14. I am thinking of Tripp, you and your family today.

    Love from Southern Ontario, Canada (near Niagara Falls)

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  15. Dearest Courtney, I awoke this morning thinking of your beautiful Tripp. My heart is broken for you. We miss Tripp and his take-your-breath-away smile, adorable lips, chubby cheeks, kissable and smooshy little hands and little feet. We miss everything about him. And it's NOT okay that you can't hug him. It's just not okay and it will never be okay. You share your feelings so beautifully, and Tripp is the luckiest little boy to have the best mommy in the world. We miss him and we pray for you, sweet Courtney. Lots of love, Laura Lee McChesney, Laguna Beach, California xoxo

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  16. Hello Courtney. I've followed your story for a long time through your cousin Erin Tabarrok. Erin and her husband Mark both took care of my son, Lev, during the three years I was lucky to have my little lion (Lev means Lion in Russian and heart in Hebrew...)in the world. We lost Lev just over two years ago to brain cancer, the end of a long fight after he was diagnosed before birth with heart disease and spent his entire short life battling one impossible thing after another. Your grace and happiness throughout Tripp's life and despite your sorrow struck me from the beginning and I've never stopped reading your words. I was so sorry to hear of your loss. I'm so grateful, though, that Tripp had you for a mom. Grateful that your faith lets you know that you'll be reunited. Grateful that you have Stephen to help you remember the good things on earth. If there was one lesson I've learned as I've tried to rebuild, tried to find my footing, it's that one: Remember the good things on earth. There are so many amazing things happening every minute even as the sadness threatens to overwhelm us. Weddings, gorgeous new babies born, glasses of wine with friends, laughing at videos of kittens on the internet...my cup overflows with them each day. It's a gift to have known your story and a gift to hear that you're as strong as ever one year out. Greetings from two years out, mama. It never gets easier, but I think we just keep getting stronger...

    Yours,
    Michelle

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  17. Dear Courtney
    I continue to be overwhelmed by the beauty and strength of the love between you and Tripp. I think of Tripp a lot- he lives on somewhere I am sure.

    I hope you mind some comfort today in the fact that so many people love you and your son, even though we never met either of you.

    You inspire me to be better as a mother, wife and friend and daughter.

    And wow what a gallery of joy seeing those gorgeous photos of Tripp.

    I continue to be heartbroken for you but full of hope for you.

    Please write a book - it would be a best seller.

    X

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  18. As always Courtney - your heartfelt thoughts brought me to tears. I will forever remember Tripp's birthday and of course the day that God made him an Angel. My prayers and thoughts are always with you - you and Tripp have really touched my heart. I loved to see the precious photos of a beautiful boy who was taken from you way too soon. HUGS to you. Gloria from Virginia

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  19. Always thinking of you and your sweet boy. Praying for your heart <3
    ~tracey

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  20. I am very sorry for the loss of your little boy. Tears rolled down my face as I read your amazing story and saw the photos of your son. May God give you the strength each day to look at life as a blessing and know that each day your son was with you, was to help you become a better you as well. Thank you for sharing your story!!!

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  21. my heart breaks for you. I've been following your story for years now, and it has helped me be a better more loving mother.

    thank you.

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  23. Forever in my heart, I will never forget seeing the picture of Tripps hands, folded as if he were praying. It was one of the first pictures that I seen after our son was born in 2011 with EB. I googled EB and that was one of the images that I viewed and from that day on, I followed every post and tried to friend request you on FB numerous times. You have been a inspiration to me and so many other families that EB has changed. I will never forget this day and I will forever spread the word about EB and fight for a cure not only for my son, and many others but for your son and all the EB angels as well. May God continue to bless you and I hope that you continue to blog, I look forward to reading ever one of them.

    Sirena

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  24. Today and everyday, we send our love to you and pray for God to bring you peace. Through your pain, you have inspired so many...I give thanks for stumbling across your blog, just when I needed to, and firmly believe it was divine intervention. So, although we have never met, I consider you a friend and someone I would do anything to help. Thank you for sharing your sweet little angel with us all. I will never forget his beautiful face.

    XOXO-
    Mary and Baby Jack

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  25. Courtney...<3 & prayers with you always.

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  26. I'll never have words to say but I am always praying for you and crying with you.

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  27. Beautiful words paying tribute to your boy. Your post brought me to tears. My love and prayers are with you....

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  28. god bless you courtney. I have been thinking about you daily, but I have focused all my energy and love and prayers on you since yesterday, because I knew today marks one year since Tripp received his wings. You are truly wonderful and we love you and Tripp, that amazing warrior, that little boy who teaches us daily and brings us closer to God. may you find your peace. my thoughts are always with you.
    christiana (cyprus)

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  29. Still here, still praying, still missing your sweet boy with you....

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  30. Courtney,


    My two daughters and I started following tripp's story about a year and a half ago. Kaitlyn is five and Madison is thirteen. They both feel in love with Tripp, and they would ask me how he was doing. We looked at his pictures and videos together. We paticipated in a few of his fundraisers, when he passed, my heart ached for you. At the time, I could only imagine how you felt. But today, I KNOW exactly how you felt and what you continue to feel. My five year old, kaitlyn, passed away oct 19,2012. It was a freak accident. She was pinned on top of an elevator that someone built into their home. Because there were no safety features, kaitlyn was able to gain access to the top of it. No one realized she was up there, and someone used the elevator. Just out of sight for a short time, and she was gone. Everything you wrote is so true! I miss everything about her! Even the times she would get mad and cry. Every day is a struggle, but somehow I manage to make it through to the next day. Our lives changed forever the day we lost our children. The only way I know how to make it trough this is to keep kaitlyn's memory alive. She may be gone, but her life isn't over unless I allow it to be.

    God bless you!
    Hope guillory

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  31. He was such a cutie, so happy. You did a wonderful job raising him and the time he was here on Earth I am sure you made so happy for him. He was a gorgeous boy! I know what you are feeling, I lost a child at 2 months old. It never really gets better, you just learn to live day by day the best that you can and with the help of God all is possible. He will mend your broken heart. You will see your baby boy again. God bless you and your family.

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  32. I never leave comments, in fact I never read blogs. Your son was such an adorable, chubby guy :-) I can never imagine your pain, but as I read your words I had tears in my eyes & chills through my body. I can't imagine having my baby & then just not. and having to live everyday, normally. eat. work. wash. I am so devastated for you. I don't know why God took him home but try to be comforted knowing he's pain free, snuggling with lambs in Jesus' arms. I'm so sorry, God bless ur family & may he ease the hurt ur soul feels. I enjoyed looking at his sweet smiles & hearing ur story. for mothers who have lost a child & for us who haven't, it helps us think a little more about others.

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  33. Hello Courtney,

    Just wanted to take the time and let you know that you are a true inspiration. I recently endured the unimaginable and lost my baby girl on August 25,2012. The pain as you well know is at times unbearable. We are just starting this horrific journey, yet your strength and faith is a becon of hope. God Bless you and your family and angel Tripp!!!

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  34. Prayers hugs and love from one mama to another. Always thinking of you and Tripp.

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  35. There are so few words. I cannot comprehend your loss! Your baby boy was so precious! Those cheeks, those eyes, and that smile! Rest assured that he is playing and giggling and completely well in Heaven with Jesus laughing at his antics. You will be with him again someday. Until then, keep reminding us to pray for you so that you will be like your friend who can help someone else get through their sad days. God bless you!

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  36. this breaks my heart. Babies and mommies shouldn't have to suffer so much. Our thoughts are with you. Hugs!

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  37. I cried reading this untill the end. I lost my son of 2 years and 9 months so about the same age as your sweet baby. I can't imagine how i'll b feeling the day that marks one year of him being gone. It's to hard to think of that day. I just wanted to tell you im sorry and that I know your pain a pain I wish no mother would ever have to feel.

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  38. Sitting here weeping with you. Sending love and prayers from one stranger to another!

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  39. You are blessed with your friends and family. I truly believe that God placed all those people in your life for a reason and I also believe that Tripp is smiling down on you. It totally stinks. He should be here with you. You are a great mommy. So sorry for all your pain. I can't read this without crying...can't imagine how broken your heart feels:(.
    Emilie

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  40. I remember reading your post a year ago & thinking to myself "I can't even fathom what it would be like to lose a child".... & then I did on 9/24 & it has changed me forever. This is a "club" that nobody wants to be a part of. However, the amazing support we can give each other is invaluable. You're absolutely right, nobody can know this pain unless they've been through it. Don't rush your grief, there's no timeline for this type of thing.
    You ARE an amazing mom & he will be honored in everything that you do! Somehow we will get through this but I still don't know how!

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  41. I am so sorry for the loss of your son. I lost my 22 year old son, Clayton, last year. The 1st anniversary is coming up and I am dreading it. God bless you.

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  42. Dear Courtney <3 I am so sorry for the pain you have to live with day in day out. Your son Tripp was a beautiful, smiling little boy. I am so, so sorry for your loss. There are so many negligent people in this world and I will never understand why it is the good, kind loving parents like yourself have to suffer. <3 xx <3

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  43. I am speechless. How palpable your pain must be. I am so sorry. Courtney, you will be in my prayers. Tripp seems like a wonderful guy. You will be in my thoughts, dear heart.

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  44. Hi Courtney,My name is Debbie Moore and I am so sorry for the loss of your precious baby. I didn't get to know Tripp, but after reading your blog I feel as if I knew you both. My Grandson Jaxon Boye also suffers from EB. My heart breaks everyday for my son and his family. I believe God chose Chad and Sara to be Jax's parents because he knew the love and care they would have in their hearts for their son.I believe God chose you to be Tripp's mother for those very same reasons. I know how it does feel to lose a child. My 1st born , my daughter Jacqueline was born in 1975 and passed away in 1977, due to a freak accident. I woke up to find my child had passed away and the pictures in my mind have never gone away.Life as I knew it was over. My heart broke into a million pieces and I miss her every single day of my life. When people say it gets better, I'm really not sure what they mean.The only way in my mind it would get better was if I woke up and discovered it was just a bad dream and my baby girl was still here with me.If they say time heals all wounds, they my reply is no it doesn't.What I do know to be true is that as time goes by our lives start filling up with things that take up our time.Our minds start to realize that we were blessed to be able to have held our babies and loved and comforted them. We find that it was our honor to have been called mommy by such precious lil human beings. That we tend to concentrate on the happiness they brought to us ,and the good memories we have of them.I love and know that Tripp was a blessing to you and that he was blessed to have you. I know we'll always miss our babies and wonder why we have to have lost our children. But I will always remember Jackie as a blessing to so many and her beautiful smile that brought joy to whoever knew her. The comfort I find is not that time has passed but that she is with God and all those that have passed before us that loved her as well are watching over her now. I pray for everything good for you Courtney.I pray for all our EB friends and families. I pray for a cure for EB.

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  45. Courtney, from the first time I heard of you and Tripp have touched my heart. I am sorry for the loss of your precious little angel, who is now looking down at you from heaven! You're right, God has HIS plans and His plans always happen even when we have no clue as to why or what they are. While reading this, I look at pictures of my son and cry my eyes out...for you and your loss, what you're going through, and for having a healthy little boy. Thank you for sharing your story, you have touched so many lives from all over the world. God bless you and your family. <3

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  46. Thank you for the post. I always love to read them, even though they make me cry. I want you to know that I will always remember Tripp. I will always love him. He changed my life forever. We all live differently after learning so much about life through Tripp. We love stronger and deeper. We learned so much about God, prayer, grace, joy, peace, love.....I miss him terribly, yet I have never met him. It's such a loss to us all that he's not here anymore. It breaks my heart. I'm so sorry. Just wanted to say that his headstone is AMAZING!! It's a perfect memorial for him. You couldn't have done a better job! You and your family are truly wonderful people. Congrats on the engagement, new house and new baby nephew! We would love to see some pictures of the little guy. Take care and God bless you always.
    Angela Nave - Goshen, Indiana

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  47. Wow I can't believe that its been a year already. I remember finding your blog when Tripp was only a few months old and my now 5 year old was a baby herself. May God continue to comfort your heart and let you grow in the plans he has for your future. You are amazing Courtney.

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  48. Courtney,
    You are such a beautiful child of God. God truly did choose the best mommy for Tripp. Oh, dear one. God identifies with your pain. He is right there with you; He is holding Tripp right now. What a precious heart you have. I am blessed by your words. Know today that the Lord's favor has rested upon you, and that you are loved.

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  49. No words- just hugs and prayers to you, your family and little Tripp. Bless you and your family.

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  50. I have been thinking about you the last few days as I knew the year mark was coming. I thought of you and Tripp last night actually. As always, know Tripp has changed many lives and you are an inspiration.

    - Joanna, Joseph and Jude
    Madison, WI

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  51. Hi Courtney,
    I have never lost a child and when I try to imagine the pain you and others are going through, I can't. I try and try to place my feelings where yours are but my mind won't let me go there. So from this, I know the pain is just too deep and the void to wide for a parent who hasn't lost a child to understand the depth of your loss.

    God does understand the pain you are suffering, for He too let His Son go and had to bare the deep searing pain of that loss. He can relate to you and He is always there to comfort you in only way the Heavenly Father can comfort, completely and wholly.

    Praying for you and rejoicing at the news of your wedding.
    <><

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  52. Thank you for sharing your story. Your son is beautiful.
    While many of us cannot ever understand all you have been through, we know life is not the same and will keep you in our prayers.

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  53. Hugs to you and kisses sent heavenward to Tripp. <3 <3 <3

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  54. Bawling my eyes out and praying for you today and for a very long time to come. Tripp was a beautiful baby with such an amazing mommy in you. May the Lord continue to see you through each second, each minute, each hour and each day as He continues to hold you in the palm of His hand. Your writing is beautiful and poignant. Thank you so much for sharing your beautiful story of love and faith. May He bless and keep you always. Many hugs!

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  55. My goodness, he was beautiful. Heaven is so lucky to have him. You are and will continue to be in my thoughts and prayers, Courtney.

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  56. Tripp will never ever be forgotten~ he sure taught all of us so much! You too Courtney! I have marveled at your strength through the years I have been a blog "friend". I know your Mom thinks you are the BEST DAUGHTER EVER, along with Brit of course!! Know you are though of often and know that the thought of little Tripp brings smiles to so many. Tripp will be thrilled for you as you become a new wife. He will send more angels to you so you can "Mommy"~ a role he wants to see you performing again! Love to you!
    Meme

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  57. Trip is adorable...so precious. I love his drummer skills .....x0x Keep up the faith...

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  58. Oh the Tears! I knew this day was coming and I have been watching the calendar as it was nearing closer. I have prayed for you almost every single night since Tripp went to Heaven. I still cry thinking about your sweet baby boy that I never met. It was your baby that made me realize that I needed to hug MY baby a little tighter everyday and be more thankful. My baby was only 6 months old when Tripp passed and I was still battling sleepless nights and the stress of a new baby....but after reading your story and getting to know Tripp through your blogs i knew I had to be more thankful and more patient...thanks for that gift that you and Tripp gave me.

    Like I said, I still pray for you a lot, on his birthday, at Christmas...I am always thinking of you. God Bless You and I hope you have a Good Day today remembering the precious little gift that Tripp was and how he has changed so many lives for the better! I hope to visit his gravesite one day and maybe even you!

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  59. My prayer for you is that you will find peace for your heart and comfort on this very sad day. It reminds me of the verse to mourn with those who mourn and rejoice with those who rejoice....there is a season for all those things, today I mourn with you.....may the Lord shine his love and peace around you and your family.

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  60. Dearest Courtney,

    I had Tripp on my heart all weekend - please forgive me for not remembering why! I won't even pretend to imagine what you're going through, but please know that my family loves you and still prays for you. Tripp was an unbelievable child, and God used (and is STILL using!) him in a mighty way. Praying for extra peace and comfort for you today.

    Love from TX,
    Laura (for Team A)

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  61. I cried as I read this. Im so sorry for what you're going through. I know that doesn't really help but I am. I don't know what you're going through but I know how much I love my son and for that reason my heart breaks for you. I think of Tripp often...usually when I see Elmo :) I will continue to pray for you. God bless.

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  62. I've cried the through the through the whole story. I lost my first beautiful daughter of SID'S at 7 months old. So you story truly touched my heart. I can clearly remember the feeling. The feeling is like no other and your so right If a person hasn't been through the loss a child, theres no possible way they can begin to understand the pain. It drove me when people would say I understand although they ment well, I knew they couldn't possibliy understand. All I can say Courtney is it will in time with the love and strength of our father in heaven (with our angels)get easier to cope with. Good always comes out of bad and Tripps story is being used to glorify God through your strenght. Your amazing always know that things always work together for thoes who trust in God.

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  63. Dear Courtney: My name is Cheryl and first and foremost, I am so very sorry for the loss of your sweet baby boy. My heart hurts for you, as I, too, know the pain of losing a child. A baby. I had never heard of EB until I came across the stories on Facebook of Baby Easton (who has TRULY stolen a piece of my heart!) and also Baby Eli. That is also how I just learned of yours, today. While my daughter, Jessica, was not born with EB, it was still no less of a shock to learn that, because of either stepping or sitting on her umblical cord right before birth, the lack of oxygen to her brain rendered her blind, deaf, unable to swallow or have any head control. She came out fighting seizures and required a gastrostomy feeding tube shortly after birth. My husband and I were basically told that children with her condition, hypoxic eschemic encephalopathy, tend to live only a couple of years and what they usually die from is pneumonia. Baby Jessica was two years and two months old when she passed away two days after Christmas in 1997 from exactly that. You are right in that it's not fair and does not follow the "normal" life cycle. I, too, was very angry because I felt I did all the right things: reading, birth classes, regular checkups, etc. My husband, too, was my ROCK and I cannot imagine going through that experience without him. He also helped me to see that, if Jessica could not remain on this earth with us, WHAT BETTER PLACE for her to be than in God's loving arms! She is one of His angels now, no longer in pain, and being (I'm sure!) a joy to behold! May God bless you and your family and I hope the pain you are and will experience at the loss of your son be lessened by the knowledge that, not only was he a BLESSING to you, you were the same to him...God picks ANGEL MOTHERS very carefully!

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  64. Dear Courtney, I am so sorry for loss and broken heart. I know there is nothing I could say to make it any easier but my heart goes out to you. God love you for all you have been thru. I know you couldn't control the quantity of years your sweet baby boy had but it is obvious in the pictures that the quality of life you gave him was more than any child could ask for, especially one who was battling such an unforgivable disease. Your love for him shows in abundance in each and every picture and he was as blessed to have you as you were to have him. You will see him again one day and there will be no more EB or pain. I will keep you in my prayers that the Lord comforts you and helps you find your way day by day. I know he will alway be in your heart. You take all the time you need, no one can tell you how long to mourn, only you know how you feel. Don't forget that alot of people are praying for you and are thinking of you. Tripp was truely a beautiful sweet boy! Again, so sorry!

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  65. so saddened by your pain Courtney :( I can not imagine the pain of losing your precious angel Tripp.....I do know he has had a profound affect on many peoples life's and hearts. He is sadly missed by all....RIP Tripp ♥ ♥ and sending many thoughts and Prayers for you to heal Courtney...We Love you ♥ ♥ ♥

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  66. Courtney
    I think of you so much and wonder how you are doing? I think of Tripp and can't believe this year went by. I told your sister on her FB status that when i think of Tripp, I think of him beating his drums and shaking that little booty.. I can't ever imagine how losing him felt to you. Plus you were with him every minute.. and i think of your mom..
    Nancy

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  67. I learned of Tripp a year ago today. I cried for the next two days. I shed tears again today. Courtney, you opened my eyes and heart to something new: How I might approach those who have lost children. I thank you for that and for continuing to share your life with us. I will always humbly remember this day in honor of Tripp, you, your mother and your family.

    In Christ's Love,
    Scott

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  68. I learned of Tripp a year ago today. I cried for the next two days. I shed tears again today. Courtney, you opened my eyes and heart to something new: How I might approach those who have lost children. I thank you for that and for continuing to share your life with us. I will always humbly remember this day in honor of Tripp, you, your mother and your family.

    In Christ's Love,
    Scott

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  69. I can't come up with anything eloquent to say that might actually make you feel better, so I will just say I'm thinking of you, and have been all day.

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  70. I can never think of the right words to say to you so I'll just start by telling you just HOW amazing you are! Your love for your sweet boy is absolutely incredible! You are such a strong person & Tripp was so lucky to have you as a Mommy, just as you were blessed beyond words to have had him for 2 years & 8 months to the day! I am so sad, and so heartbroken, as I type this through the river of tears flowing down my face! You're right, it's NOT okay that Tripp is not here, just as it will never be "okay" and never be understood! EB is so cruel & so unfair! May you continue through life knowing one thing is for sure ... you have one amazingly beautiful angel watching over you always! I love you sweet baby Tripp & I think about you all the time! Please keep your Mommy safe & guide her through this life. Xoxox Love & prayers to you & your family!

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  71. Hello Courtney,
    I have never commented here before but I want you to know that Tripp will NEVER be forgotten by me. I have read your blog and keep up with every update no matter how heart wrenching it is...because as hard as it is for me to read it is billions times harder for you and if you can get through it, I can stand to read your story and remember Tripp.

    I cannot express to you how sorry I am that you have to go through this. No one should. You are stronger than I think I could be. I have not been through what you have, but I can imagine that I would agree with you; that you will never again be complete. IT will never be okay that he is not with you. It will never be okay that you have had so much pain. But, YOU will be ok. Complete, never, able to understand why this happened, no - never, not even okay about it happening NEVER, but you will be okay, yes. You have the best family a girl could ask for in this situation and that will help you be okay. You also have so much support from so many of us that you don't even know and probably will never even meet. But you are in our thoughts more than you can know. There is so much love going your way, you will never truly be alone.

    I am so very sorry.

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  72. Sending love to you! Praying for you!
    Best,
    Holly Arnold

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  73. Hi Courtney,
    Of course we followed Tripp’s story while he was here with us on Earth and prayed for him, but now we lift Tripp’s family up in prayer nightly. My son Carson has RDEB (age 5). This morning I embarrassingly forgot it was Tripp’s one year anniversary, but for some reason dressed my entire family in red today. I never coordinate a color just to hang out at home and match. I didn’t find out today was his anniversary until tonight when I got on facebook and saw your post at the exact time it was posted. So my Carson, my Charlie (one year old), myself and my husband in his red tie had a red day. Obviously I was led by the Holy Spirit and your Tripp to put my entire family in red today. AMAZING how your angel Tripp is watching over us as we struggle with EB daily. I love you Courtney and will continue to pray for you as you heal and for your EB journey. Love, Kristy

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  74. Woke up to this post and I've been thinking about you two all day. Your words continue to be so beautiful, heartwrenching, and honest. Thank you, thank you, thank you yet again for sharing Tripp's amazing and heroic life with all of us, and sharing your heart along the way. You are an inspiration to many. Much love and many hugs to you and your family always!

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  75. I will hold you, your beautiful baby boy, and your family in my heart as I pray tonight. Words fail me, but please know how sorry I am for all of your pain.

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  76. Courtney, not a day goes by that I don't think of you. Even though Tripp was only a part of my life online and through Patrice and Jonah, I miss him. I really, really miss him.

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  77. How could anyone not believe in God. There is no way that you could possibly be this strong without him. No way. I am a mother myself and I have been following you and Tripp's story for over a year. You are nothing short of amazing. Amazing. You are brave, and honest, and beautiful. Your son was just like you. Strong, and beautiful and brave. I wish I knew you so that I could be your friend and cheer you up. I would do it. You know what life is really about at a really young age....and some people live a lifetime and can't seem to grasp it. And you are still faithful to God. I am only 32, but feel like you surpase me in everything. Please know that when I lay my head down tonight, that I will pray that your heart feels better. I love you and I think you are beautiful.

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  78. Courtney: you are remembered ever so often and Tripp is not and will not be forgotten. I have told others of your boy and feel I have shared some of my life with him by giving part of my heart to him, you, and your love-filled family. May God's peace fall upon you, flow within you, and fill you.

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  79. Thank you for this and your example! I understand in different ways...ALMOST lost my child physically to an accident that left him with severe brain damage. So even though he is still with me...he is no longer the boy I once knew. SO I mourn my loss of him but love him for who he is now. I care for him daily...trach and all and my life is different. I worry that one day he will pass before me and I will have to mourn that loss all over again.
    I too am learning to trust God...even though I don't understand at all why I have been given what I have been given.
    I am grateful you have found an amazing man to share in your happiness and pain!!
    Sending my love to you!!

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  80. You continue to inspire me to live more selflessly, more patiently, more lovingly, and more gratefully. Thank you for sharing your angel with us. My students and I have learned so much from you both. My thoughts and prayers are still for you often.

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  81. Thank you SO much for continuing to include 'us' in your life and in your thoughts and feelings. It's an honor. Being terminally ill myself, and knowing that there is a home for all of us that our Heavenly Father has prepared, I know that Tripp is one of the very first people I will seek in Heaven. I've loved him for over two years and I can't wait to know from him what his earthly experience was like. I know already that he will sing your praises as the best mommy in the world, and truth be told, I'll have to agree with him. You take good care of yourself mommy, and I know that your Tripp is still making you proud in the next life, as you continue to make him proud in this life. Love to you and all the family!!!

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  82. I'm remembering you and Tripp today, not that your journey and EB are ever far from my mind though.

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  83. Lord bless your sweet momma's-heart, Courtney. Prayers for your renewed hope in heaven. I know after losing a little one, that was the most blessed thing I grew to understand. Nothing else can heal a broken mama's heart. May your tears be shed with an ever-present hope.
    Also, I am sure you have come across it, but I have cherished the poem A Pair of Shoes. May it too bring you comfort. Hugs sister.

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  84. We prayed for you a year ago, but not realizing the date last night you entered my heart again. Last night, you and Tripp bounced in my mind and I prayed again. I didn't know why or how the image came to me, but it was enough for me to stop thinking of me and starting praying for you. Guess that's what Guardian Angels are for. May your Angel wrap his arms around you and give you peace.

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  85. Dear Courtney, I've been thinking about the date of yesterday approaching for some time and I felt heartbroken for you and Tripp. It is not right that he had to go before you and it is not right that you have to wait to hold him and kiss him again. They say that if your husband die you are a widow, if your parents die you are an orphan,but if your child dies there are no words to qualify this excruciating pain. As you say, it's like your heart is ripped off your chest and shattered in million pieces and it physically hurts, you physically miss him and long for him.
    I "met" you and Tripp only through your blog, but I feel so close to you and you are both constantly in my mind and inspiring me. I find myself crying over Tripp and you especially when I can experience something beatiful and I am saddened at the tought that he had not had the opportunity to experience the same here on heart.At the same time I am so grateful that he was sorrounded by the best love and care one could wish for. I cannot even imagine how you feel. As you know, I lost my Angelica in advanced pregnancy so although the experiences are very different I feel to say that I can relate to the pain of loosing a child even if each own experience is so deep and peculiar. I take this opportunity to apologise to you if you ever felt hurt because I was telling you about my experience and feelings to show you one of the million patterns this can change your life. I had somebody telling me nastily that my loss cannot compare to the loss of a toddler. Please know that I never meant to make comparisons and no one knows our deepest emotions, expectations, dreams, struggles we have to face. It's impossible to find an answer to why Tripp had to leave earlier and to why you have to suffer so much. When our Angelica grew her wings our priest told us: "do not ask yourself why it happened. Focus on the lessons she left you". Tripp was an amazing teacher: I have lived in different countries met and read about a lot of people yet I think that nobody could be a better teacher of patience, strenght, courage, optimism, faith and trust, unconditional love.
    My main message comes to what you say: trust in God. Remember : "For God so loved the world that He gave His only begotten Son, that whosoever believeth in Him should not perish but have everlasting life." The pain you are experiencing and the longing to hug and kiss Tripp will never go away, but I pray for you that it will be gradually transformed and translated into something beautiful. I pray that God gives you peace and shows you the way to continue Tripp's mission. He has and continues to change so many hearts! And we'll be there to help you in any way you will find suitable.
    I thank God for the blessings he gave you by sending you your amazing family (your mum and sister are beyond awesome- thank you Anita for your amazing role and for being the most fantastic granny one could wish for) , Stephen and your friends. Thank you for sharing your life with Stephen and Tripp. This moved me so much; thank you so much Stephen for having being a guardian angel to Tripp. The images of Stephen sitting behind Tripp's rocking chair or helping you with baths are priceless and brought me to tears.
    You are wonderful Courtney and prayed for daily. Tripp melted my heart and he will always be remembered and honored by me.
    Love you Tripp and Courtney <3

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  86. i will never forget the story of you and your son, you two are just an amazing pair, the love and sweetness always takes my breath away and makes me bawl like a baby.

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  87. I fell in love with your little boy and he stole my heart with every picture, video and story you shared. He is truly amazing. You both touched me so much that I shared his story with my family and friends. I cried tears for your broken heart. I just want you to know that no matter how much time passes, I will never forget. I am so happy you have found love, your best friend, and that you have such an amazing support system and unconditional faith in God. You are an inspiration and you should be so proud of all you have overcome (even if you may not feel like it some days!). My heart reaches out to you, I respect you, and I hope you're doing okay.

    XOXO
    Jenny @ jpetschke625@gmail.com

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  88. Courtney,
    We have been thinking about you and can't even imagine what you are going through. Rafi recently said she wanted to be called Tripp because she trips all the time. I told her I would be so happy to have her nickname be Tripp and when she gets older she will learn all about you and your son and know what a privilege it is to have that name. Much love, Jackie, Brett and Rafi

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  89. I don´t know what to say. Prayers sent your way from Spain. LOL

    Cristina

    PS: I wore my red for Tripp. Love you little drummer boy

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  91. Courtney,
    My heart breaks for you. My first daughter's birthday was January 14th. She lived only 10 short months. I remember the gut-wrenching agony...horrible chest pains from a breaking heart, the intense aching of arms longing to hold your baby again, bargaining with God for one more day with them as if somehow that could ever possibly be enough. I'm so sorry for what you and Tripp have had to endure. I pray for you and share your story often. I'm glad that you have found someone who truly loves you.

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  92. Praying for you....You are such an amazing mother, God knew what he was doing when he made you Tripp's mommy. I wish so badly you didn't feel so sad. May God continue to allow you to notice the blessing you have in your life. xoxo

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  93. thoughts and prayers. I found a saying today that touched me and kinda fits.
    "When someone you love dies, you never quite get over it. You just slowly learn how to go on without them.But always keeping them tucked safely in your heart."
    Hugs and Kisses to you Tripp.

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  94. Me and my11 year old daughter check ever to see if u have posted. We are truely touched by Tripps story and pray for you often! God bless u and ur family and u will continue to be in our prayers. I have Tripps sticker on my car and explain yalls story whenever someone askes about it! All my love and prayers for u and ur family! Lisa

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  95. Thank you for sharing! I lost my son, Seth, nearly four years ago. After we lost Seth on of the most challenging things was for me to feel okay having happy days. I'm so glad you're experiencing new different happiness.

    Please know that Tripp will not be forgotten and he was blessed to have such a wonderful mom!
    ~Erica

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  96. I will always remember Tripp, always. Much love to you.

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  97. Wishing Tripp were here to celebrate with big Elmo drums on his birthday.

    I know just the pain of losing a child and I'm so sorry you are part of this club. It's daily waking up and choosing life when you're not sure how you can go on. I'm 2 years out now and I still cry.

    Sending love to you.

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  98. Courtney, let me just give you a mental hug when I can't in real life. I have not had a child with EB--but I do know loss. I once was pregnant with twin boys, and one without my knowing passed away in my womb, and I delivered both 10 weeks early. His brother remained in the hospital for 6 weeks and now has a type of cerebral palsy. My son, who was still born, we had named Jeremiah (before we knew his "fate"). I will NEVER forget what it was like to hold his body in my arms, the weight of his little body I still can feel...although it's been two years since I held my sweet boy. I never got to see his eyes, smile, or touch his warm babysoft skin. He was with the lord before I got to ever see him. So I do not know what it is like to miss that, and miss him in my life...and to have those memories. I've always said that no way is better. It's terrible to have them for a while and lose them with only memories and photos behind, but it's also tragic to have nothing. As parents we should never have to face the loss of our children--it's not natural and it comes with so much pain. As time goes on, the shock and raw pain might dissipate but the emptiness is still there. Every milestone and moment of your life is left wondering what it would be like now if they never left us. It'll never go away. BUT with all of that, we KNOW they are with our LORD. I used to bawl in shower feeling like my baby needed me, he needed his momma to hold him and kiss him and tell her how much i love him. And then God showed me..my son isn't some Baby crying in a cold room needing his mommy---no, he is everything he was supposed to become on earth but better...he's grown, at his most awesome potential. His eyes shine, his smile is brilliant. He is full of the love of the Lord, he is NEVER in ANY pain. Ever. He is full of Joy.He doesn't long for us his mother, but he is simply waiting for us. This life may seem long, but an eternity is forever and you will get to see your son and it will be as if you never missed a second with him. You will get to kiss those lips and hold him and see him be happy and painfree and perfect. FOREVER. and ever. and ever.... THAT truth helped me feel better as a mom. I still wish I could hold him. So while I heal and wait for my time, i learned that holding a teddy bear close (in my case a frog) made it feel just a little bit better. That I can cry if I need to and it's ok to cry no matter how long it's been. It's also ok to smile. What our job now is to remember, use our experience to be the light and support for others who experience loss, and to live our life to the fullest knowing one day we'll be together again. :) HUGS mama

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  99. Courtney...I have been following yours and Tripp's story for just over a year...and I remember reading about his passing, and just bawling my eyes out until they were swollen. And just knowing that if I could feel that much pain, for a child and a mother that I didn't even know in person...that the pain you had to feel was a million times magnified. Like many others I don't even know what to say...I'm thankful you've been strong enough to share yours and your amazing little boy's story...that you've shown others God's hand at work, even when we don't understand it, and when it sucks, and it's not fair. Sending love from Arizona. -- Crystal

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  100. Dear Courtney,
    Maybe it helps you a little to hear that Tripp has made me a better person as well. After I had gone thru your blog nearly exactly a year ago, I started googling about EB and butterfly kids and I ended up knitting and crocheting clothing for stillborn babies - a thing I had never even thought about before. And I try not to be so hard on my kids when they get all excited and start fighting with each other.
    Love from Germany

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  101. Courtney, my husband and I make "Inspiration Angels" they are necklaces and the motto is "Spin the wings, remember your blessings" and I would LOVE to send you and your loved ones some!! It has gotten us through hard times to remember, everyone has SOMETHING to be grateful for. You can emails lorislovables@gmail.com or tbtcreations@gmail.com with your address and what your favorite colors are. Check out TBT Creations (Thoughts Become Things) on facebooke or even Loris' Lovables on facebook to find us. Your story inspires us and we would love for our jewelry to inspire your!!

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  102. Hi Courtney,

    I have been following your blog for a while when I was pregnant with our second child and always asked God to give you strength. I didn't know that I too would identify with you because our son Jaden, passed on 26days after birth in November 2012. It was such a shock to all of us, and the pain was unbearable and it has been 2 months now. I can identify just a little with your loss and emotions. I love God but I miss my son so dearly.

    We are also blessed with my daughter who turned 3 in January and she also misses him so much and it is a painful place to be but I thank God for the love He has shown you through your friends and family. I thank God that we live in the hope and faith that we shall see our babies again and that the love we have for them is unconditional and goes beyond death.

    I thank God that no matter the pain, your faith is stronger and you lean more on Him. May he continue to be your rock and pillar of strength. God Bless

    Sylvia,Kenya

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  103. Dearest Courtney, You and your Mom are always in my thoughts and prayers <3 My grandson, Jacob, has a mild form of EB. He is 27 months old now and he gives me a little insight into what you and your Mom must feel. I have to admit, I can't even go there completely in my head...I can't breathe :'( So, all I can say is that I understand that I can't fully understand, but you have my deepest heartfelt sympathy as you try to go on and live your life without your precious boy :'( It know it is great comfort and little comfort that he is with God, I pray that God continues to guide and comfort you and your family.

    With loving sympathy,
    Rebecca Bair

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  104. Courtney - I'm not sure you'll see this, but if you do, please link to my blog (www.avb-belle.blogspot.com) and read today's post (Loss...and peace, and love). At the bottom, there's a link to a petition to Congress to extend the benets of FMLA to parents of deceased children. It's a cause close to my heart, and I belibe you'll find it compelling as well.

    I have no words to quantify how Tripp has affected my life. You are inn my thoughts and prayers, always.

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  105. Dios te Bendiga, Ten la Seguridad que tu Hermoso Hijo está en el Cielo Cuidando de tí y Orgulloso de la Madre Maravillosa que Dios le dió, nuevamente Dios Te Bendiga!
    Perdona por no Escribir en Ingles espero puedas entenderme.

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  106. I stumbled across your blog a year and a half or so ago, and followed you and Tripp closely. My heart went out to Tripp, and I have the utmost respect for you. You are such a great mommy! I ended up having a special needs child as well, my son was born in September 2012 with a severe complex heart defect, and thanks to your blog, and seeing your devotion to Tripp, I knew I could be strong for him like you were for Tripp. I am so, so sorry for your loss, and I can't imagine the pain you feel. You and Tripp have touched many lives, and for that, I personally am thankful.

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  107. We won't forget, Courtney. He touches many of us still. You are in my thoughts and prayers and I am so sorry you are hurting.

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  108. Courtney,

    My heart aches with you...I lost my baby girl when she was 1 month old due to complications from Williams Syndrome. She was my 3rd child. It was an unexpected loss. She was not diagnosed until after birth. Like you, I had so many questions of why me and what did I do wrong. Your description of the loss and the grieving process seems all too familiar. The 1st anniversary of the loss was the hardest to get through. I too leaned on the Lord for strength and comfort. Without Him, I would not be here today. It's been 4 years now and I have been blessed with the birth of a healthy little girl in 2011. The pain eases a bit over time but there will be moments of unexpected grief. Allow yourself to be in those moments of pain. For in those moments of weakness, know that the Lord is with you, comforting you. Thank you for sharing your story with us. Tripp is one precious little boy who's life has touched so many hearts.

    Amie

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  109. Courtney,
    My heart is breaking for you and I am balling my eyes asking GOD why did he have to do this to him and to you. It is not fair. It is not fair. I commend you for sharing this story. You have changed my life and I will appreciate every single thing that I have more than ever. You are a hero, and I know Tripp is with you every second. I don't know how to help you console or how to tell you it will go away when it will never go away. A mother's pain for her son DOES NOT go away, but I can tell you that God is preparing you to be with your son again.

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  110. Courtney,
    I can't begin to understand your pain. I lost my younger brother tragically 6 months ago today, and it has been very painful for me. But I know my pain is nothing compared to the pain my parents have endured and continue to endure. Just like you, they lost their son too soon. There are no words I can say to make you feel better. All I can say is my sons and I(6 and 2 yrs old) pray for you EVERY night when we say our nightly prayers. We love you!
    Gina S.

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  111. Dear Courtney,
    What a beautiful, heartbreaking tribute to Tripp and to your faith in a loving God. Thank you so much for the guts to share your journey with those who have never traveled such a difficult path. I'm so sorry you lost your beautiful boy. I'm so sorry you have to carry the burden of grief every day. I can tell you that your words and pictures of Tripp and his smile and gorgeous eyes have affected me for the better. I am keeping you in my prayers and hope that every day brings just a little more healing to your heart that is broken in so many pieces.
    Thank you for sharing your story and for sharing your amazing son.
    Fondly,
    Maureen

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  112. Dear Courtney,
    Thank you for sharing your story and that of your AMAZING and BEAUTIFUL boy, Tripp. I hope every day brings you a little more healing and peace. I'm so sorry you have to carry this burden of a mother's grief. Sending prayers and tears from Virginia.
    Fondly,
    Maureen

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  113. Like most of us, I do not know you personally. I have been reading your blog for some time, before Tripp went to be with Jesus. I always think about him when I see the drum that we have, or when my little one watches Elmo on TV. I check your blog to see how you are doing...If I knew you personally I'd be texting or calling every day :) I think of you and your family often.

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  114. Like others that have posted here, your story also touched me to the core. I also cried for you and my heart truly ached for you. The photos of Tripp are so beautiful and so full of life and love. So sweet and such a ray of light. He was really something special and so are you. Wishing you peace.

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  115. Hi Courtney,
    I stumbled upon your blog today and I have to say your entry really really touched my heart.I am sorry for your loss and I pray that God will give you strength to overcome the pain and loss you're going through.

    hugss



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  116. One Year!
    Thank you for sharing your son with us - your blog friends.
    Aren't we all so blessed to live in a day when photographs assist our memories of loved ones and days gone by? I often consider what it must have been like years ago when photos didn't exist.
    I am so grateful for the little and big blessings in your life. Even the little one's seem big, don't they.

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  117. Oh my God! He was truly a beauty. He had a lovely smile. I cried when I read along this tribute to your son! I'm so sorry for your loss and hope that you can overcome - or at least lessen- your pain though I know the sadness won't go away.

    Hugs from Indonesia <3

    Caroline
    http://missoline.com/

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  118. Dear Courtney.

    I haven´t wrote something to you before, but I followed you a long time before tripp went to God.
    I just want to let you all know that Tripp is missed even here in Sweden.
    I hope that someday you can smile again, from the bottom your heart.
    Lots of love,
    Jessica Kernell
    Linköping, Sweden

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  119. Dear Courtney,
    My mom and your mom are 1st cousins. My mom's Maiden name is Elizabeth "Libby" Dugas. I have followed your blog for about 3 years now. What you wrote was such a wake up call to how we deal with people who have lost loved ones. I am so sorry you have to go on with out your son. I can tell by what you wrote that your heart is stretching and growing. Praying God continues to comfort you.

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  120. your story and your Tripp have touched me more than you will ever know. I'm crying with you even though I know, I really know that I have NO idea, not the slightest what you're experiencing. My prayers are with you.

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  121. You are doing really great, Courtney! Highs, lows, really lows, and the super-suck-the-air-right-out-of-your-body lows, you are doing great. You've grown so much in this last year. Your love for Tripp is a shining example to all mothers.

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  122. Praying for peace for your broken heart tonight, Courtney. I'm crying heavy tears for you and praying that God heals your broken heart. God Bless.

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  123. Courtney, I cannot imagine the pain you are going through, I just found out about your gorgeous baby boy's story and I am really overweldmed, the way you are so positive makes you a great woman and it is really inspirational, God has great plans for, cause you give light and hope with just writting, God bless you and continues giving you the strength you need... Nancy C. from Mexico

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  124. hey,
    you are a Super women.So I have just read your article and seen you Son.I felt that you are great woman.Don't worry God will blessed with you.hey I am a business women and I don't care about any thing I am providing Some toys Coupon Codes for Babies.But now I am so angry on me that i am also a woman but not like you.Your stories are touch my hearts.My best wishes are with you.Your son is so cute.thanks for advising me.Thank you!
    Ana

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  125. You are an amazing woman. At a time where I am fighting to keep faith when there are challenges my own family is facing your words have encouraged my heart. In all things God is present. If you can still trust and believe despite all you have endured surely I can stand strong and hold onto my faith. Thank you for trusting us with you and your son. You both are angles. One on earth and one in heaven. I pray that God continues to touch give you strength.

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  126. I've shed tears as i read your story,Courtney.I believe this is the hardest moment u going through without your little angel. And we believe that God will never give u more than u can handle. You & your little one are in my prayers.God bless <3

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  127. You are amazing, Courtney. I still think of Tripp often and miss seeing his cute little face. I have learned to cherish every day with my children because of Tripp. I wish I had some words of comfort but I know that will not change anything. Just know how much you both still touch my heart. I know you will be together again and until that day he will look down on you, saving you a place. Hugs!!

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  128. My heart goes out to you. I am so sorry for your loss...I can't even imagine what it's like losing a child. The closest person I have lost is my father, and I still struggle to talk about him without crying. I will keep you and your family in my prayers. I believe we may never know "why?" to so many things...one day you will meet your son again in heaven and can give him a big bear hug.

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  129. May the Lord Jesus be with you, Courtney, and with your family. Thank you for educating me on the EB disease, so that I know to stop and pray should I see another baby with it.
    Love and blessings,
    Dana Kruckenberg

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  130. Courtney and family,

    I have bad news. I've been diagnosed with cancer. I'm asking you to pray for me that God heals me and allows me many more years of life with my wife and children. Please ask Tripp to pray for me and intercede for me to God.

    Benjamin

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  131. I just discovered this blog by accident and I am so overcome. Tripp was absolutely beautiful. I am so unbelievably sorry for your loss. I cannot begin to imagine the level of anguish you are in. You are in my prayers! God bless you, Courtney! You are a truly AMAZING woman!!!!

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  132. I think of you all the time, Courtney, and pray God's peace & comfort for you. Tripp is not forgotten. He will always be in our hearts.

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  133. Courtney I read your blog from start to finish some time ago.. and have recently stumbled back on it.. I am glad to know you have Stephen and countless others by your side. I remember first reading of Tripp's passing and crying behind my monitor. Bless you...

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  134. I have been reading your blog from start to finish on and off since just after Tripp passed. My heart and prayers are with you now and always, and I want you to know, Tripp has completely stolen my heart. I haven't posted before as I was not sure if you would see it, and I hope this post finds you well as can be. You are SUCH an amazing mommy, and I am sure you will be an AMAZING mommy to the babies that will come your way in the future. They will be hand picked by Tripp, and able to play with their beautiful, amazing, wonderful big brother, before joining their mommy here on Earth. I think Tripp knew he was going to be leaving soon, and perhaps that is a big reason he loved Stephan, he knew his mommy would need a strong, loving man to look after you when Tripp could not physically do the job. I am also sure that he smiles, and watches you every day, between playing his drums, and walking with Jesus, and I can bet he tells everyone around him, "that's MY mommy! Isn't she great?!". Be well, and remember you are loved every day! :)

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  135. I hope you are doing okay. Such a silly word, I know. "Okay". I am sure you don't feel okay most days, but I hope you are able to find glimpses of hope and peace each step of this journey that no parent should ever have to take.

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  136. Dear Courtney,

    I came across your blog today and saw this entry. My heart breaks for you and your family. I gave birth to my daughter four months ago, and I'm not sure I could be as brave as you if I was in your shoes. I am sincerely inspired by your honesty and bravery. I shared your post on my blog to spread awareness about EB even further. I hope you can find a small amount of peace in knowing that Tripp and his story is helping so many future children.

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  137. Praying for you, Courtney, and for God and his precious angel Tripp, in heaven, to comfort you! Have followed Tripp's story for some time and am always so moved when I revisit your site. You and Tripp continue to touch my heart. He is the sweetest boy, and you are the best mommy. Sending prayers and love your way, always. Vanessa

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  138. I am so sorry for your loss, I can't even think or imagine how heart wrenching it is to lose a child. I pray that God will give you strenght every minute of the day and shower you and your family with abundant of loves. We all know Tripp is now in a better place. May your day will always be brighter like a sunshine and may happiness will always be with you. I may have missed reading some parts of your blog post, wonder what happen to Randy. May God bless you and your whole family. Big Hugs, Yuzz Yusof

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  139. My heart breaks for you. There are no words. God bless.

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  140. I pray for you all the time. I pray for you to have peace. You are so strong. My heart breaks for you and I think about you & Tripp often. Thank you for always being so open & honest with us, it is amazing. I'm so glad God brought you Stephen b/c you are amazing person who deserves to be cherished & loved.Find some great Chic and Hot Wedding Dresses

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  141. It has been so long since I have seen a post that I wanted to touch base and let you know that I pray you are healing and doing well. Praying also that our precious LORD and Saviour is continuing to uphold you and your family and may you all be blessed with knowing He loves you!

    Love and blessings, Alice Collette

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  142. I can honestly feel your pain and I am so sorry for you and your family and especially for your son. I too lost a son but I didn't have the luck to see him live a life. My dates were off and the doctors let him die thinking he was younger than his age. But he was over 2 lbs and should have been saved. I have cried every year since he has died and he died in 1995 on February 14th. So I have never celebrated Valentines Day since his birth and death. I have spent the day crying for my son who is one of God's Angels now. My Nicholas Gregory will forever be missed by his mom. I hope that for you, you can move forward and celebrate Tripp's life as I couldn't. I would have loved to see him grow but God had other plans for us. May God keep you close and give you strength and heal your broken heart.
    Love and Hugs,
    Mary Baldassano

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  143. Think about you so often and keep you in my prayers, Courtney. I can only imagine your pain, but our God knows your sorrow and He cries with you.

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  144. Courtney, you were on my mind today. Just wanted you to know I still think of you and Tripp. I firmly believe God has an amazing plan for your life. I cried with everyone else when he passed, but not because he was entering our Savior's arms, but because I knew how much your heart would hurt. Praying for you and the road He leads you on.

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  145. How R you Courtney? I'm checking you everyday via this blog, if you have written something.

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  146. Still often think of you and your sweet boy and pray you feel more moments of peace and God's comforting grace as you continue on your journey. Hoping your new home and wedding plans are coming along nicely and wishing you all the happiness your precious heart can hold. For as long as I live, the sound of little toy drums and the sight or sound of Elmo will always bring to my mind the miracle that was your beautiful Tripp. He is remembered and will never be forgotten. God Bless.

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  147. I miss your sweet sweet baby.. Please share how you are doing, what are you feeling. We are thinking about you a lot!

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  148. Dear Courtney: I am so sorry for the loss of your amazing little boy. As I scrolled through his pictures I was so moved by the fact that in almost every one of them he was smiling! What a great kid! My daughter, Meredith, died in her sleep in 1988. My gift is that she did not suffer. Not one bit. I am lucky in that. Tripp suffered, immensely, but I'm willing to bet that suffering was cut dramatically by your beautiful dedication and love. All these years later I can be torn to pieces, out of the blue, with grief. But know that those moments at least grow further and further apart. I woke up thinking about her today, my usual self-punishment: "I should have just gone in when I hear her" and later stumbled across your blog. I now know that my Merry and your Tripp are tumbling and playing as only children can do; I woke up this morning thinking of her, perhaps, so that they could meet. You have been so strong for so long and will continue to do so, I am sure. God bless you,

    Rachael Craig

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  149. why haven't we had any more posts from Courtney?

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  150. Thinking about you and hoping you will return. I check everyday!

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  151. Think of you often. Always sending up prayers. Hope the home and wedding plans are all going well. Love from California...

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  152. Happy Mother's Day, Courtney. You are a mother I truly look up to.

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  153. Thinking of you Tripp today on your birthday. Praying for you and your beautiful family Courtney. HUGS from Virginia

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  154. Courtney- I just found your site; I want to thank you for sharing your beloved Tripp's light with our world. Thinking of you both, today.

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  155. I came across your blog on Pinterest while searching for ways to incorporate faith in God to a group of 9 year old cub scouts. My heart goes out to you. The smiles on your little guys face in all of those wonderful pictures tells me, that despite his trials in this life, he was able to find joy. And you helped him find that joy! Keep trusting in God, I know He is there for you and will be forever to strengthen you until you can one day be with your son again. May God bless you and keep you in the palm of His hand. <3

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  156. I think you are a very kind hearted person ,honest and open about all you have been through i admire that . I am so sorry for your loss.

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  157. I am so sorry for your loss, You are a very loving person. god bless you .

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  158. I have just discovered your blog Courtney. I am sorry for your loss. In th few years Tripp lived i can tell he had a very happy life. This is life...i hope that are feeling ok.


    regards from Cyprus

    Eleni

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  159. I have followed your journey from almost the beginning and have thought about you often, especially lately. Thanks for the update! Please continue to write. Your strength and healing, good days and bad, are for yours and I find inspiring. Your raw emotions of having difficulty with yourself feeling happy are quite common and there are no 'right' emotions when you've lost someone. You are the mom your son was supposed to have and you did the most wonderful job the you were chosen to have. Blessings and love to you and congratulations to you and your wonderful husband in the new journey ahead.

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  160. Oh, Courtney. You were such a good mother to your precious baby. You were so loving and patient and kind with him. I am so sorry for your loss.

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