Friday, March 30, 2012

You just can't.

Today was a yucky, sad day.  Perhaps my body is finally catching up on rest from the past 2 1/2 years.  And maybe reality could finally be setting in or the shock wearing off...  I'm not sure.  I have no clue what my body is feeling or what I'm supposed to be doing.  I know that I am the queen of putting on my happy face and sucking it up.  Most of the time, doing that is SO much easier than crying.  But today I had to cry.  I can only go so long trying to be strong.  I am so good at holding in the tears and the pain until it builds up so much that I literally can't hold it in for one more second, and the tears just flow.  

You know how when someone loses somebody they love, they say that a "part of them" is missing?  Well, I know that for me (and I'm sure everyone else who has lost a child), that this "part" is a REAL physical part.  When I say that a part of me is missing, I really feel like it physically is.  It's not just a figure of speech.  There is such an emptiness in my heart when I think about my baby.  And the fact that he isn't here with me anymore just physically hurts so bad, almost to the point of nausea.
  I don't know how else to explain it.  

Tripp was my entire life.  Literally.  He was the reason that I woke up, the reason I took every breath, and the reason I did ANYthing for 2 years and 8 months.  Even though I've been keeping busy and trying to do normal things to make people think I'm okay.  I know I'll never be okay.  
Will I go on with life and function like a normal human being? 
Yes.  
Will I do fun things again one day without feeling guilty every minute while I'm doing them?  
Maybe.  
Will I ever be OKAY with the fact that I have to live without my baby?
  No.  
I'm sure of that.  That is a feeling that doesn't change.  And no matter what I try do to "move on" (I hate those stupid words...) my life will never ever be the same.  I will be happy in different ways, I know... with my great new man and all my wonderful family- but I'll never be able to get back the piece of my broken heart that Tripp took with him when he left.  

I don't know if I have shared this with you guys yet, but I always think of the day that Tripp left my arms.  I think about the moment when I knew that he was no longer here, but had gone to be with Jesus.  I don't know if I could explain the feelings I had at that moment.  I wanted to go with him.  An instant feeling came over me and I was immediately not scared to die.   I'll never be scared to die.  It was an instant feeling that nothing on this Earth really matters.  And that's sort of what I'm struggling with.  Obviously I know that I can't choose when I get to leave this Earth (if I could... trust me, I would).  But I just feel like time is standing still.  Actually, I feel stuck in-between two lives.  I have a beautiful life here- with a guy who treats me like a queen and would give me the world if he could... amazing friends, family, and support.  I'm blessed that I don't have to rush back to work and I can take my time and grieve properly and get back on my feet.  But I also have another side of me that is missing my little boy so much that I would forfeit my life here in one second.  

I often think about the things I would do with him if he could come back for one day.  Oh, what I wouldn't give to be able to play his favorite songs in his rocking chair again.  Or to listen to him beat his drums to "shoo-fly" while fussing me when I ask him if I can drum too.  I know in my heart that I didn't take one day for granted... but I can't help feeling that if I just had one more day, I could show him how much I REALLY loved him.  Because it's so true that you don't know how much you love something or someone until they are gone.  I never ever thought that I could love Tripp anymore than I did when he was here with me... but I can tell you I would give ANYTHING... and I mean anything... to see him again.  
I know the time will come... but those words just don't seem to help right now.  
I can't even bear to flip through pictures anymore... 
I miss him so much. 
And I've come to the conclusion that you can't fix a broken heart.  
You just can't. 




Love,
Photobucket

171 comments:

  1. {{{ Hugs }}} Holding you so close to my heart & praying. This life is hard sometimes but there will be One wonderful day when you will be together forever. It's just hard waiting. Love you

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  2. LOVE to you!!! No words more to say.

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  3. Coutney,
    When Chloe passed away saturday night, I was physicaly sick, I hated losing her and I can honestly say, I know how you feel. When Chloe passed away I said "Have Tripp show you how to play the drums!"
    I hate this pain that us EB mommys have to feel when we lose our children to it.
    Chloe may have only been 3 1/2 months, but I spent everyday at the hospital with her and I understand how you feel about them being part of you is missing. I miss going to the hospital everyday.
    let your self grieve, cry as much as you need to.... Tears are a language only God understands.

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  4. Courtney, I am just so sorry. All I can say is that I have continued to pray for you. I pray God will give you the strength, comfort, and peace that you need so much right now.

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  5. courtney: you should take all of your blogs, journal entries and write and publish a book on your experiences and your grief. i think all mothers would appreciate your thoughts and feelings; especially, those who have lost a child...a

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  6. Here's hoping that the pieces of our hearts that we have willingly given to you might find their way to fill the cracks in yours.... we love you Courtney. We love you for sharing Tripp with us, for helping to make us better friends, people, and parents, and for continuing to trust us with your story. Please feel our strength and best wishes for you. This is your journey, we are just honored that you are allowing us glimpses of your grace.....

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  7. courtney, my heart aches for you and for your painful loss of losing such a precious angel. tripp is definitely an angel in heaven, watching over his brave mama, who so lovingly took care of him everyday. thank you for sharing your journey with your beautiful son. i continue to keep you in my prayers as you heal. and you will heal, but i know you will never forget. god bless you courtney!

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  8. My heart aches for you and i wish something i posted would help you feel better. But please know i love you so much and send you the strength you need to get by each day. Thank you for being you xx

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  9. Dear Courtney,

    No amount of time will ever mend the lose you feel but you are such an amazing mother and an inspiration for me. You gave everything you had to your son and just from reading your story I know that, that wonderful precious little boy loved you more then anything. I pray for you, your family, Tripp and your broken heart and I hope God finds a way to make things a little easier for you. You have touched so many lives and so many people support you and as much as you might feel sad know that your never alone because he is always smiling around you.

    Whitney Caskey

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  10. No words, but I do hurt for you. Praying!

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  11. I'm so sorry you have to feel this way. I know these feelings much too intimately. I think of sweet baby Tripp every day, along with so many other sweet babies ripped out of our lives way too soon. I think of you in this terrible lifelong heartbreak. I have my living family life here which includes my husband and only living child and I adore them, but I have another "life" with my two little boys that I long to be with as well... ((hugs)) www.heatheringthestorm.blogspot.com

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  12. Im so sorry for your loss. Our best friends live next door and we struggled to have our own children for several years and they had a little girl with tracheo esophageal fistula who was very near and dear to us. Unfortunately she passed suddenly two and a half years ago at the age of 3. Her mom started a grief blog haileyshalo.blogspot.com and voiced similar struggles and feelings to yours. Maybe it could help you to read her blog from the beginning? My heart goes out to you.

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  13. How do I send.you a private message?

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  14. Courtney, I cant even begin to understand what you must be feeling. You are such a beautiful and selfless person. Trip was so lucky to have you for a mother. And you were so lucky to have him. I will always keep you in my prayers and I know you will see your sweet baby Tripp's beautiful face again.

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  15. I am praying for you...I wish it didnt have to be so hard....sending you love and my thoughts...

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  16. Please know Tripp knows how much you REALLY love him and what an extraordinary gift that is...to leave this world knowing how much you are loved. Not everyone gets that gift.
    Surrender everything to God; you are His child; he will carry your cross when you can't go any further.
    My prayer for you, and all moms who have lost a child, is a prayer for some peace. Peace in wahtever form it may present itself: a loving partner, family, friends, kind words, etc.
    You and Tripp have touched so many lives of people around the world. No one can possibly expect you to be strong; this is your time to ALLOW yourself to feel and grieve the loss.
    Love and peace to you, sweet Courtney.

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  17. my heart is broken for you....I think about you all the time. I wonder how I would deal with a fraction of what you do, and did...I thank god everyday that my daughter is happy and healthy. Nothing in this world is ever gonna replace him or make that pain go away. you do what you need to do, and in your own way. *wraps arms around you* may god give you some peace in your heart someday.

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  18. Courtney,
    I am a Home Health nurse and mom of 2 in Lafayette. I have been folowing your story for some time now. I have felt your pain and heartache. Because of you and Tripp I hold my kids a little tighter and linger in a hug a little longer, and for that I am forver in debt to you and Tripp. I wanted to share something that happened to me today. I saw an 80 year old patient who shared with me today that she had lost a child at a young ago. I told her that I was sorry for her loss, she looked at me matter-of-a-factly and said, "Why? People do that"...die she meant. And it made so much sense to me, we all do die, just some of us faster than others. She was so peaceful with talking about it, and that is what I hope for you...peace. You will find it, I have faith in it. Sending prayers from this Mommy to Tripps Mommy.

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  19. Of course you can't. And nobody expects you to. You are the bravest person I know, Courtney - but even brave people have to cry. This sounds weird, but I'm glad you're able to cry - you need to let those tears flow!

    I haven't lost a child or had one go through everything Tripp went through, so I won't pretend to know how you feel. But please know that you are LOVED, and that we are all praying for you. I wish there was more I could do or more words I could offer to make it better. Just continue to rely on the Lord for your strength, and cry as much as you want to.

    ...and I know Tripp was smiling at you and your mom while you were in TX helping with Anton. What a blessing you were to the Delgados!!

    Continuing to pray for you!

    Love from TX,
    Laura

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  20. I have nothing to say. I haven't words. I am speechless.
    I just want to say that I am really sorry. REALLY sorry.

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  21. This post brought me to tears. EB is such an unfair disease - not only to the dear ones who have it, but to those who love them.

    Courtney, I know nothing I (or anyone) could say or do could make you hurt less. But I do know that God, who is now holding Tripp, can bring comfort and peace even in the midst of the most horrendous of situations. So, I will continue to lift you and your family up to Him and entrust you to Him. May His love overwhelm you and grant you a peace only He can give that can surpass all understanding. May you rest in the fact that He understands, as He gave up His Son for us.
    ((((((((Hugs))))))))

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  22. love and lots of prayers to you, sweet Courtney! I am so so sorry. No words can cover your pain. So I will pray. <3 xo

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  23. Courtney, I do not understand the pain of losing a child, nor do I want to do so. I am a stranger to you but I have been following Tripp's journey with you for a long time and my heart breaks for you. I do know this...and that is Tripp loved you very much and he knew how much you loved him. He knew the sacrifices you made for him without batting an eye. He will always be with you in your heart (I know that sounds so hollow right now) and he will be listening when you talk to him. Tripp would want you to be happy and healthy and live the life that he could not. As I sit here, grieving with you, I have tears rolling down my cheeks at how much I wish I could help make it better for you. So, please live life and enjoy all it has to offer. A friend in Christ.

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  24. Prayers, hugs and lots of love are sent to you. One minute at a time..

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  25. My WHOLE heart goes out to you. I can not imagine your pain. I did not know Tripp, but just the other day I heard the Mary Poppins song, and immediately thought of him. I am SO SO sorry that Tripp had EB, and I am so so sorry that your precious boy had to leave you. It breaks my heart.
    Because of Tripp, I know what EB is. I have adopted two children with special needs, and advocate for more. I saw a little one for adoption the other day, with EB, and I knew what that disorder was. I shuttered to think this child is fighting this battle alone. It is so sad to think of, because I know how much you gave to Tripp, and how you made every moment as happy as you could for him. You are a great Mommy! Thank you for sharing Tripp's story with all of us! ((hugs))

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  26. I'm so sorry. I can't even begin to imagine the terrible ache of being here without your child. My best guess is that it must feel something like trying to learn to breathe under water or walk around after your heart has been cut out of you.

    Of course a part of you is missing. Your blood was in his veins, your breath was in his lungs, no cell in his body did not have part of yours in it. Everything you did was for him, and you were the center of his world. The magnitude of your loss can never be quantified or properly expressed. The only thing I can think of to counter that is the knowledge that what is so tightly held and deeply intertwined can never be completely lost. Just as you shaped Tripp into the sweet, beautiful child he was, he also shaped you. He will always be with you--even if not in the way that all of us wish he could.

    I'm still thinking of you and your family every day, and praying continually.

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  27. Dear Courtney, i cannot imagine what it feels like being a mother but having to be without your baby, so all i can do is send my regards from here Helsinki Finland. THE LORD BLESS YOU AND KEEP YOU.

    -Sami

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  28. The Lord takes many away, even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore, if rightly considered, instead of mourning we have reason to rejoice as they are delivered from evil, and we shall soon have them again. …

    “… The only difference between the old and young dying is, one lives longer in heaven and eternal light and glory than the other, and is freed a little sooner from this miserable, wicked world. Notwithstanding all this glory, we for a moment lose sight of it, and mourn the loss, but we do not mourn as those without hope.”5

    “A question may be asked—‘Will mothers have their children in eternity?’ Yes! Yes! Mothers, you shall have your children; for they shall have eternal life, for their debt is paid.”6

    “Children … must rise just as they died; we can there hail our lovely infants with the same glory—the same loveliness in the celestial glory.”7

    “Joseph Smith taught the doctrine that the infant child that was laid away in death would come up in the resurrection as a child; and, pointing to the mother of a lifeless child, he said to her: ‘You will have the joy, the pleasure and satisfaction of nurturing this child, after its resurrection, until it reaches the full stature of its spirit.

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  29. Your boy was SOOO loved. I'm sure he knows that : ). I wish you could have your sweet boy back too, he is such a treasure.
    I know you will go on to accomplish great things for yourself as well as continue to carry out Tripp's legacy.
    Thinking of you and your family often.
    ~tracey

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  30. Praying for you as you must be going through the most awful part of this grieving and "healing" process. It hurts my heart to think how slowly it must feel that time is moving before you can be with Tripp again. I'm trusting that God is beside you, holding you and crying with you.

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  31. Courtney, one more day with precious Tripp would only leave you wishing for one more day. Life is hard. We as God's children are supposed to be put through hard things in life. It doesn't seem fair, I know, and maybe it isn't. God took Tripp from your life for a reason. You have to find your reason Courtney. He could have chosen any of us to put in this position- but he chose you! You must realize that this is an honor, not a burden. He knew that none of us were strong enough to go through what you have gone through and He knew that none of us were as right with Him as you are. Don't you see- He chose you. You weren't and aren't an unfortunate mother who lost her child. Although, it is unfortunate. He chose you as the strong God loving woman you are and made you the face and voice of EB and Tripp. Everything you do and say breathes life in to so many of us. Don't you see- do you think that your blog and your story got spread like this just from word of mouth? No Courtney, God knew that he wanted nobody but you and Tripp to do this work down on earth for Him. He is who brought you and Tripp into all of our lives and more importantly our hearts. You are loved by so many but more by God because of your cross that you bare. Stay strong in Him, for only He can bring you the comfort you so deserve and WILL find.

    "Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him" -- James 1:12

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  32. One of my favorite quotes: "People cry, not because they are weak. They cry because they've been strong for too long." There is no timeline for or "right" way to grieve. Get the book "Tear Soup" by Pat Schweibert.

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  33. I am so so sorry Courtney....I pray for you every single day!!!
    Hugs
    Sunnie in NC

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  34. ((hugs)). praying for you and your heart <3

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  35. Courtney...I'm going through my own grief right now and I completely agree. In fact, I was having a day similar to yours yesterday and I wrote a post on grief. There is no moving on from a lost child...only moving forward. You love him way too much to ever move on, but one day, when you're ready, you will move forward. There is no wrong way to grieve...and grief is a beast, it can wrap us so tightly that we cannot breathe. But one day, you will breathe again...and you will move forward. Have you read "I will Carry You" by Angie Smith? I recommend it. May Jesus wrap his arms around you tightly during this painful time and comfort your pain.

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  36. praying for your broken heart - for healing and peace. hoping you can feel all of your "blog friends" sending you hugs and love!
    god bless you!
    susan
    w-s, nc

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  37. Oh sweet Courtney, there hasn't been a day that has gone by that I don't think about you and say a prayer for you. I can't even begin to imagine what you have gone through and are still going through but my heart aches for you!! Many prayers to you from our home! xo

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  38. I wish I had the right words to take your pain away but I don't. I can offer you an ear to listen, just like the rest of the people who read your blog. I check it daily to see how you are. I cannot imagine your pain. I was told after my mother died that the pain never goes away but it eventually gets easier to process. Use us as your platform to process, we all really do care about you, even though we don't "know" you we care and love you! God is watching and when the time is right He will take you to Tripp again, trust in that to make it through the days that you have left here!

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  39. Dearest Courtney: I've never lost a living child, but I think everything you are feeling is perfectly right and normal. It is all so perfectly understandable. However, I think you have to work at getting over it. My dearest childhood friend lost her daughter when she was 3 years and 4 days old. My friend never recovered, and it has been over 30 years. She never bonded with the two daughters that followed, and she became a shell of herself. It has become a compound tragedy. On the other hand, I know a mother that lost her first two children (one on Christmas Day) to a rare disease. She has three more children now that are doing great, as is she, but she said she had to work very hard to regain her life. She struggled. She knew that she had to move past it temporarily (until she is with them again) in order to give her husband and other children the best part of her. She's been completely successful, but it did take a couple years, and it wasn't anything like being easy. It was, however, a conscious decision, and she worked hard at it. I don't know if that helps, but I hope in some small way it does. I think probably everyone grieves differently and in their own time, so you do it your way, take what you need from others, and give to yourself the love you have for Tripp. You need it now. Be strong...

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  40. Continuing to pray for you...

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  41. I am glad you cried. Crying releases stress and pain and it is good for you.

    I have been praying for you often and I am so sorry you are going through this.

    Praying and praying for you Courtney.
    <><

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  42. If there is one thing that I have learned since losing my girls, it is that there is no moving on from losing a child. I went to a get together for people in my support group in which a social worker got up and talked, she said that they used to say the last stage of grief was acceptance, ie moving on. But she said now they're more leaning towards using the word "integration". In this, you move forward with your life WITH your child being a part of it still. Just because Tripp is no longer visibly by your side, you know he's still there offering love and support when you need it the most. He has affected you so profoundly, that you are no longer who you were before him. So through you, he's living on. Everything you do and say and who you are today was molded by his very existence. Many hugs and prayers coming your way.
    Stacy

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    1. Stacy, I completely agree. There is no moving on from a lost child, only moving forward...as best as possible.

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  43. Sending you love. If only the love from others could mend your broken heart! But sadly, it can't. I'm so sorry Courtney. I cannot imagine your grief :(

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  44. Ohh Courtney my heart breaks for you! Your precious baby knew how much you loved him. We could all see it through all the precious videos. Don't be so hard on yourself but also remember you don't have to pretend either! You are in my prayers daily! I fell in love with Tripp because of you! I think you are prettty talented to capture all those memories on video....anytime I get my camera out to record my girls they immediately stop doing what they were doing including my 9 month old :) sending Hugs & prayers your way Sweet Courtney!

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  45. I am not sure what to even say, and I too lost a son. I am praying for you and know what it feels like to loose part of your heart. I am so sorry. I wonder if our boys have met, I wonder if their beautiful, happy little souls have time to miss us.
    We will be with them again!
    In Christ, Kelley

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  46. Dearest Courtney, I had a quiet moment tonight and started thinking of you. I opened your blog, and wouldn't you know it, but there was a new post from you. A gift from you to all of us. Thank you for sharing the feelings in your heart. What WE wouldn't give to give YOU one more day with Tripp. Oh how my heart continues to ache for you. My heart aches for you and for me. We miss Tripp. And we love you, Miss Courtney. I just had to share with you how much we love you. And that whenever I see butterflies, I think of Tripp. And tonight my baby boy, Lance, is sleeping with his Elmo, and we are thinking of Tripp. Sending you all of our love and light from Laguna Beach, CA. xoxo

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  47. the pain will never go away but I PROMISE you it will get easier to live with. 7+ yrs in this journey myself and it took a good year or two before the pain got easier to live with. I know its hard to imagine next month let alone next yr but just take it one day at a time....we are all here for you!

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  48. You are always in my prayers girl. And I know without a doubt that Tripp knows more than anyone how much you loved him and how he was and still is the air you breathe. He knows that it is because of your love for him that you keep going and you imitate happiness - because he wants you to gain happiness and fun again. Don't ever give up, because I know that neither Tripp nor God will ever ever give up on you. I also know that Tripp is holding you and telling you he loves you in his own way. And he will be there the day you can be with him again sing shoofly and elmo and tell him everything you learned and did. All my love and prayers to you and your family.

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  49. hugs and praying for your peace every moment. =( love you

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  50. i know we have never met but I want to hold you and cry with you. I had never heard of this disease until there was this video about you and your son on my friend's facebook wall here in Michigan. Your son was beautiful and so are you and I wish there was something I could do to heal your heart. I cried myself when I looked at the loving photos of you and your precious son. I especially liked the black and white of the two of you, so touching, so real, so full of love and emotion. Just know that I want to heal your heart and pain and give you your son back, I am so sorry for your loss and am amazed at the grace, love and honor that you carry yourself and your son's memories with. I wish I was half the class act you are and I am thrilled that you have been so successful in raising money for this cause. How can I hep with a donation? May your loving memories carry your heart forward and comfort you. You are both so beautiful. You will both remain in my prayers and I look forward to sharing your story on my facebook page to raise awareness and hopefully money for such a wonderful cause. Leisa bball2021@gmail.com

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  51. There are no Words. I cant even fathom the pain you are dealing with. Praying for you here in Northern California.

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  52. My heart breaks for you and how unbearable this is. Thinking of you and Tripp all the time, I so wish it was different. xx

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  53. You are so inspiring. You are such an angel here on earth. My heart aches and can only imagine your pain and broken heart. Your little man is a bright angel blessing so many in heaven. Tripp is playing his drums and inspiring so many in heaven and here on earth. Hugs, Michael

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  54. Courtney I want to hug you! I pray daily for God to continue embracing you. Tripp is with you in spirit. He is the bravest boy in the world.

    Love from California.

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  55. hugs & prayers....your strength, your courage...your EVERYTHING...I wish I was just 1% of you. YOU truly are amazing!!!
    Look to heaven at night, find a falling star. Wish on that star and talk to your baby.
    I lost my brother....when I need to talk to him, I go outside...and wait...wait for a star. One comes...two comes. A sense of "peace" comes over me. He's with me...he sends me shooting star to show me.
    Hold on to your memories.

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  56. Found your blog yesterday and want you to know that I have been thinking of you Tripp...and your loss since reading. My heart aches for you. I admire your strength. I know that Tripp is with Heavenly Father and Jesus in heaven smiling and drumming. Please know you are in my thoughts. Much love and prayers your way.

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  57. Oh sweet angel, I am praying for you. I know there are NO words that can ease your pain or heal your heart. I know that there is no sense to be made of this incredible heartache you are going through. But know that you are loved and that you are being carried before your Lord Jesus in prayer so that HE and HE alone can give the comfort, peace, and strength you need every day until you go home to be with HIM and your SON. What a glorious day that will be.

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  58. I am just so sorry for you. This is devastating. All we can do is pray for you. I hope you can continue to share your life with us. There is gut wrenching desperation in this post and you have a gift for writing that expresses that to us and we share your pain. In your post shortly before Tripp passed you implored us to pray for peace for him and multitudes of us did. I pray for that peace for YOU now. That Tripp's legacy will be his life rather than his death. That your healing will progress quickly. My heart aches for you. I am so, so sorry your journey is so difficult.

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  59. You do have an extra, extra hard situation, that's for sure. Every second of every day was spent taking care of your son. On top of an aching heart, the hours of every day that you normally spent taking care of Tripp are now empty. Your arms are used to holding him, your legs used to holding the two of you up, the scent of him and all the other physical sensations are just suddenly gone. Please don't feel I'm minimizing your loss with my next comparison, because I know a child is so much more significant than a pet, but when my cat died, it was weeks before I automatically stopped looking for her in the patch of sunlight where she always laid, and even longer than that before I didn't sometimes automatically get her bowl out when I fed my other cats. When I think of how I felt losing a cat and think of you losing your SON, after all the love and care you gave him, I can easily imagine how each day must feel to you right now and I commend you for being able to put one foot in front of the other each day right now. That alone is a huge accomplishment! I know that Tripp was your EVERYTHING! He filled your heart, mind and soul to overflowing! Your love for him was the most perfect thing in the universe, even while you aren't, like any of us, a perfect being. But your love for him made you great! It gave you such strength! Just hang on as best you can while you figure out this new world without Tripp in it. There's no getting over it. There's no getting used to it. You are just slowly, ever so slowly, figuring out how to live with it and I know it hurts sooooo bad! I'm so thankful that you know that you are a Child of God! I'm so very sorry you have to go through this.

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  60. Dear Courtney
    Alex and I send you an enormous hug from London. I, along with so many people wish we could do something to help you but only time will heal in part the terrible sorrow you feel. Cry. Shout. Scream. It IS unfair and neither you, Tripp or any other person suffering from a terrible disease deserves it. But know that your story and Tripp's story have helped so many people find a deeper love in their lives, or have been motivated to help a stranger, or raise money to fight EB.
    You have a global community of friends, as well as a wonderful family and partner so even when you feel so alone - missing the one person that completed you, we are all thinking of you. xx

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  61. Courtney-
    I think of you and your sweet Tripp daily. Your relationship change my own with my son and because of you sharing your story, he and I will always have a stronger bond and better appreciation for each other. Your son truly did God's work on earth. I don't imagine this loss will ever get easier but we pray for your comfort and happiness to someday come. You are an exceptional, exceptional person. God bless you.
    Courtney

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  62. My heart aches just reading of ur pain Courtney :*( I think about u & ur sweet lil man everyday when I look at my Tripp bracelet that I got from the awesome people at our vets office (ur fmly)! U have a great support system but I know nothing can stop the pain ur feeling & I cannot even pretend to imagine that agony! God gave "U" baby Tripp for a reason... ur a fighter & he knew u were just who the EB babies needed 2 b their voice! B strong as u always have been but its ok 2 cry.... holding it n only weighs u down with a heavy heart! You've done amazing things 4 all of the EB families.... keep up the good work, we're all so proud of u & ur courage! U & your family will always b in my thoughts & prayers!!! ((((HUGS)))) Love, Belinda

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  63. Courtney, I'm so sorry you have to go though this. I feel your pain when I read your words. You are a mommy first and always will be, whether Tripp is here or not. I know you will see Tripp again and when you do he will tell you that you didn't need one more day to show him how much you loved him. He knew how much you loved because he felt your love everyday for 2 years and 8 months. Please know that I am thinking of you every day and hoping that one day that ache you feel will get a little bit more bearable. We love you!

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  64. My prayers are with you as you grieve this terrible loss.

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  65. Courtney, I am so so sorry. I cannot even begin to imagine your grief....
    When I try, it is beyond horrible and I am sure reality is 100 times worse : ( Honestly, I don't think you ever get over it, and it is cruel for people to suggest you will. I do think eventually life will get easier, especially because you have such wonderful family and friends supporting you. But that hole in your heart will always be there, just know that Tripp will always be remembered by people who didn't even really know him. He was a beautiful, wonderful little boy that will live in my heart and mind forever. big hugs.....

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  66. Oh Courtney, it is still so soon and so raw. Our daughter passed away shortly after she was born in 2009, and that first year is a hellish rollercoaster of PTSD-like flashbacks, yes-wanting to die even if you wouldn't kill yourself, and just a lot of pain and tears. I hope you don't feel like you have to put on too much of a show for others, because I think that that doesn't do the grieving "process" any favors. But I can tell you, while the pain doesn't go away, it gets easier to live with, you just get used to it, I guess. There will be a day-maybe not this year but eventually- when you will smile and laugh again-and a day when you will smile and laugh without feeling guilty about it. But it takes time. Hang in there. Praying for you.

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  67. Courtney , my beautiful daughter, Summer, died a year ago, aged 9months10 days from spinal muscular atrophy (SMA1). I feel 100% the same as you. May our Angels play joyfully in Heaven together. XOX

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  68. No, honey, you're right. No one can "fix" this. And I am so sorry. So, so, so sad and sorrowful over your hurt and lonesomeness and homesickness for Tripp.

    You *know* all of the right things - that there is future hope, that you will see him again and hold him again and that he is *okay* and safe in Jesus' arms....and yet, you just have this awful, horrible loneliness for him.

    So, for right now, just go with it. Let it be. Let US carry you to the Heavenly Father and be your strength.

    Praying for you always - just know that, okay? You are so loved.

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  69. Jesus is Lord of the "Broken Heart!" along with His own Mother.

    This is not anything that you don't know. We are made of the dust of the earth infused with the Breath of Our God. As flesh we will FEEL the sadness and pain. With the Spirit of the Living God we will soar and rise as on eagle's wings.

    Throw yourself on that Sacred Heart and the Immaculate Heart will wrap you in grace.

    God is collecting each and every tear. You and He are exchanging your sorrows for healing and compassion being born in all of us, who are sharing your experience. Love is cold and lost on the earth and you in union with the Cross are guiding us to the meaning of LOVE.

    I too am praying for you. I pray for your dreams. I pray in thanksgiving that you stood as Our Lady stood at the cross when Her Son left Her. I pray for you to find your way to the reunion that WILL Be.

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  70. Dear Courtney,

    I am so sorry for the pain you're going through. There is a time to keep a stiff upper lip and there is a time to grieve and cry. And one needs the time of grieve and tears to start "feeling" oneself again (I hope you understand what I'm trying to say).
    Wishing you the best and praying for you and Tripp.

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  71. Dear Courtney...I don't know how you do it--staying so strong for so long. With each tear, may you may find some relief from the pain; I hope you don't get discouraged over how many it may take. God bless you and give you strength to follow his path. Peggy

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  72. Courtney I red your post yesterday and I did not comment because I just did not know what to say. Today, I still do not know what to say because there is nothing I can say that will make it easier for you and bring Tripp back to your arms. All I know that God is the only one that can bring you comfort during this difficult time and to assure you that Tripp is safe in his arms until the time you two meet again. Love and prayers with you, your family, and Tripp.

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  73. Dear Courtney, there are no words suffient to use at this time. My heart is breaking for you.
    I know regret is part of grieving but i pray you know that you did everything you could for your darling boy. Tripp's road cracked and broke but he was never alone.
    jo xxx

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  74. With tears streaming down my face, I am praying hard for you right now.

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  75. *hug* I cannot imagine the pain and loneliness without Tripp, and the longing to see him again. Does he visit you in your dreams? I don't know if that would be helpful or make it worse. :(

    I don't have any advice, but I am praying for you always. I know God is holding you close.

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  76. Hugs sweetie. You're right, you can't fix a broken heart. As a mom who has lost a baby, our hearts will always be a little broken, our lives will always be tinged with sadness, we will always miss our babies.

    Thinking of you.

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  77. i am praying for you. i think of you often, and when i do, i stop what i'm doing and pray the lord wraps his arms around you. i pray the lord blesses you abundantly.

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  78. Oh Courtney, I never know what to say after I read your heartfelt thoughts that literally bring me to tears every time I read them. I honestly cannot imagine the pain you are feeling - I don't know what I would do without my boys. I am so glad you have found such a wonderful man and I know you will continue to do what you can to fight this terrible disease. I have vowed to do what I can to raise awareness as well. God Bless you Courtney. You are loved by so many people who have never even met you. I was looking at your blog and my 5 year old son saw the picture of Tripp and he said "that is the little boy who makes you cry right Momma?" He knows that Tripp is an Angel now - we have talked about you and Tripp so many times. Sending you lots of love from Alexandria, VA. Gloria

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  79. Courtney,
    In my state of Indiana we can participate in the "mega millions" lottery; this week there was a huge jackpot so there was a lot of media attention put towards it and in turn talk about "WHAT you would do with 580 million dollars." Donating a gigantic portion of the money to DEBRA would be on my list, but I found your post so poignant that not even (nearly) all the money in the world can take away pain or heal a broken heart. In this day of immediate gratification it is hard to wait on anything, much less something so painful as healing from an unthinkable loss, I'm sure the words 'moving on' are frustrating (as if). I am really proud of you for allowing your raw feelings to show-it has to be extremely difficult. I'm not sure what "grieving properly" looks like, you must wrestle with that daily. I'm thankful for your life lessons and the hope you and Tripp inspire. Love, Indiana

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  80. Courtney, I am absolutely positive, that Tripp is with you, not physically but in spirit. I was so impressed with how fully you lived every day with him. When my father in law died a few years ago, my daughter was very sad because he would not be at her wedding someday. She got married 1 1/2 years ago. Two nights before her wedding, he came to her in a dream, with a huge smile on his face and assured her that he is with her always. Your sweet little Tripp is also with you always. Tripp was such a blessing to so many people, he sure inspired me to live each day to its fullest. My heart goes out to you, as you get through each day. Hugs!!

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  81. I also don't have words to help you feel better. I just know that I would feel the same way if my daughter was to go be with Jesus. I think it describes it perfectly when you say that it's hard to find the will to stay on this earth anymore. Sometimes, it's hard to not think of how beautiful and perfect heaven will be with all of the people we love and to be with Jesus. But just know that Tripp is watching you with Jesus and he is asking Jesus to give you strength to continue fulfilling the plan He has for you and he is holding your heart in His hands. God isn't finished with you here yet and He knows that your purpose and plan is bigger than you know. But I know that doesn't make you feel better because we want the people will love here, to hold them and love them and kiss them. You are in my prayers and I watch everyday to see how you are doing.

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  82. Nothing I can say will ease the pain of your suffering, I wish I could make a difference in your life as you have in so many lives. Many people are thinking and praying for you every day. I hope you can feel God's Love for you. You will see Tripp again. He's watching over you making sure good things come to you.
    No greater love than the love you shared with your son.

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  83. You and Tripp have brought our family closer to God. With never meeting you, but reading and following we have witness God. We dont understand why this happened and we pray for you...I dont know what else to say but, God Bless and we look forward to meeting Tripp one day.

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  84. I wish I knew something soothing to say, sweet sister in the Lord. I am praying for you - and trusting that Jesus will pour His all-sufficient grace and comfort over you. You can never love with all you have the way you have Tripp and not feel such tremendous pain and loss. I pray that God will fill that hole in your heart to overflowing with wonderful memories and the hope of eternity.
    With love and prayers in Oregon.

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  85. I agree, you can't. But with faith and time, and alot of both, I believe little repairs can be made. I think of you and pray for you often.

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  86. Oh, Courtney. I am so, so sorry for your pain and for your deep suffering due to the passing of Tripp. The ache and illness of grief is so very real. I've learned that it goes in waves through my mind, body, and spirit. Sadly, it doesn't go easily, and (at least in my experience) requires it be cried out. Nothing else really releases the build up of the sorrow except tears and weeping. At least not grief as intense as the loss of one so tenderly loved.

    I know you have many who love you and wish they could carry some of your grief. May their love give you strength and comfort in these especially difficult times.

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  87. Courtney, We love you and are praying for you! It is because of you and your strength and courage (and vulnerability as well as heart ache) that has lead me to realize how very important it is to spread awareness for EB, and also Help Baby Neal (an orphan who has lived in a hospital his entire life with no one to call his mommy) with funds for his adoption (HelpNealEB.com). Thank you so much for sharing your thoughts and feelings with us all. you are amazing and always with us in our hearts! we love you, we love Tripp and your entire amazing family! and remember it is OK to cry and to be weak and to take ALL the time you need to feel HOW EVER you NEED to feel!

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  88. I am always amazed at the wonderful and beautiful comments that people leave on your blog. It is such a testiment to how much love you and Tripp have inspired in so many people around the world.

    Thank you for continuing to share your life and heart with us, Courtney. There is not a day that goes by that we don't think of you and Tripp, and pray for you. Just like you, I know for sure that Tripp is up there in heaven having the time of his life playing his drums and running around with all the other little angels. One day he will turn around and you'll be there ready to give him a great big hug.

    With lots of love from San Francisco,
    Janice

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  89. I lost my 5 year old son several weeks ago. Like you,I watched him suffer immensely for five years before he passed away, he faded away right before my eyes. I was always giving his round the clock IV meds,checking vitals, living in the hospital. My life was being his caregiver/nurse. Not only is he gone now, but I don't know what to do with myself because he was my whole life, and taking care of him was my whole life. It is so hard..I am so conflicted. Glad that he is no longer suffering and is healed and in Heaven, but I would also still give ANYTHING to have him here with me. I miss him so much, it hurts and I cant make it through a day without crying. I dont think it will ever get better.

    Tripp and Brent are healed, and you and I are broken. I know the pain you are going through..and I want you to know that you are not alone. Much love to you

    http://beautifulchaotic4.blogspot.com/

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  90. My prayers are with you Courtney!

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  91. When I say the following comment it doesn't mean on any way that I'm not considering the sheer force of heartache that must be with you minute by minute. But you mentioned your boyfriend as your new man- I have no doubt that your Tripp organized this, even before he left so there'd at least be some soft place to fall.

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  92. All my love to you Courtney-you are constantly in my thoughts and prayers. You have so many people surrounding you in love and light...

    much love...Jessica DeFeo Houston

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  93. I feel this way too, especially today...as its my boy's 2nd anniversary in Heaven. 2 years feels like 2 days again, but yet an eternity at the same time. xoxo

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  94. oh courtney... :( I can't even imagine what you are going through right how :(

    http://26.media.tumblr.com/tumblr_kvwwr60nhD1qa9nl1o1_400.jpg

    my friend sent me that picture when I broke up with my boyfriend. and yes, i know that breaking up with bf can't be compared to losing a child, but that picture is true anyways :) time heals the wounds. maybe not completely, because things like this always leave scars. but you will feel better in time, your family and your faith will help you with that. Tripp is with God now, he's happy and healthy and he misses you so much. one day you will meet again, and then nothing can take him away from you anymore.

    lots of love from Finland, you and your family are in my prayers!

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  95. Im always thinking of you and Tripp, I check your blog everyday and read through it over and over again thinking how strong and brave you are. Tripp was a true blessing and he inspired so many of us that read your blog.
    I cant even imagine how much you must miss your baby boy. I look at my son whos turning 1 in a month and i cant bare the thought of losing him. You are so strong and i know all will fall into the right place as God intented to be.

    Thank you for sharing your thoughts and photos!

    Much love from Iceland

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  96. I think about you all the time, Courtney. Wondering how you're doing, wondering how it's possible to survive losing your baby. Your strength amazes me. Knowing of you and your sweet little man blesses my family, for it has made me a better mother. You've exemplified a love I didn't know existed.

    Reading about the moment Tripp passed, and wanting to go with him, oh my heart aches. My heart aches. I continue to pray for you. Much love to you and your family.

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  97. Courtney,

    Are you familiar with Reeces Rainbow? They advocate for special needs children who need adoptive homes. There is a little baby boy with EB who desperately needs a home. Please consider posting about him and seeing if your readers will donate to his adoption fund or perhaps one of your readers would open their heart and home to him.

    http://reecesrainbow.org/31789/neal-2h

    Sue H.

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  98. I just found your blog and my heart goes out to you. That little part of your heart will always belong to Tripp. My family is praying for you and hoping that time, love and God can heal your wound.

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  99. Feeling your pain and grieving your loss is all you can do. It's such a process. Also, you're exactly right. Your heart is forever changed, and the loss will always ache. Know that your grief is not lost on the world though.

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  100. I wish I could offer a way to help ease your pain. I'm sorry you're hurting.

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  101. You are in our thoughts. Praying for you.

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  102. My heart breaks for you. I am sorry beyond words.

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  103. I cannot say that I can know exactly what you are feeling, but I do know that Tripp would want his mommy to be happy again one day when you are ready. Don't let anyone tell you when you should or shouldn't be grieving, it will happen in its own time---but IT WILL happen. You have so much more to do in this life don't forget that! Sending prayers and warm throughts your way...

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  104. You sweet angel momma. Wish I could hug you tight tight. The one thing that kept coming to me as I read this was your poem "I Need a Pinky Swear". Thankfully faith reassures me that your "pink swear" with our Lord is being fulfilled. I know he is taking precious care of Tripp, and he is getting to experience a love like no other! Tripp does not feel lonely, sad, hurt, or any of those things. He's lost in the moment up there, and for him, time is also standing still. Once his mommy arrives (one day long long from now I pray), it will feel to him as thought he only just left your arms. Heaven knows no time like we do here on Earth. Much love to you Courtney. I can't even begin to understand your broken heart. All I can do is continue to pray for your healing and that slowly but surely, you get to have some peace with all of this. You deserve it all. Much love and prayers!

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  105. My heart breaks for you. Sending you love and strength.

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  106. Courtney, I've heard it said many times that there's no greater pain for a mother than the loss of her child. My heart almost freezes anytime I try to contemplate what it must feel like...then I'm afraid to even think about it, that it might come through. All of us mother's KNOW what it's like to have a child and to love one; very few of us know how it feels to lose one. WE are very lucky that most of us never will, but you have had to experience it. For us to say it must be hard is empathetic at best. We've felt pain when our child has been hurt or ill, but that's like a stubbed toe compared to your ultimate hurt.

    We're sorry, but beyond that, we try (and I'm sure fail miserably) to "feel" this through your eyes. I don't know the extent of your pain, but I know that it must take longer than 2 years and 8 months to know who you are again on your own.

    Be kind to yourself, and go at your own pace. You can't compare yourself to most others, for you are unique, in your personality and your circumstances. When you play the "what if" game of how you would be or what you would do if you had another day, I'm glad you remember that you didn't take a single day for granted. If you ever need a reminder, just go back through your blog. You lived for him. And you will live on, until it's time to be reunited with him. How nice that because of him, you should have no fear of where you're going after this. :)

    Love,
    Donna

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  107. How great a mummy were you??? the greatest.. How much did Tripp love you??? the most.... I loved his videos, he made me laugh so much at his cheekiness and strong spirit. I shall keep him in my heart if thats ok with you - thankyou for sharing him with us Courtney, we feel blessed. I wish there was something I could say to help you with your grief, but Tripp left you his strength and love - use it xxx Nina

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  108. "People cry, not because they are weak. They cry because they've been strong for too long." Let the people close to you hold you, care for you and support you.

    You know deep in your heart Courtney that Tripp knew exactly how completely you loved and adored him just as you also know that if you only had 'just one more day' with him would never have been enough.

    Tripp WAS a part of you, he was the light of your life, the beat of your heart and the reason for your very being. Time is a healer but 'getting over it or moving on' is never going to happen you just have to, in time, take the memories and special love you and Tripp shared, with you in the future as you make new memories with the people you love knowing he is watching over you with a smile.

    Again, I am so so sorry for your loss Courtney and wish I could take your pain away

    Corrina x

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  109. One night a man had a dream. He dreamed
    he was walking along the beach with the LORD.

    Across the sky flashed scenes from his life.
    For each scene he noticed two sets of
    footprints in the sand: one belonging
    to him, and the other to the LORD.

    When the last scene of his life flashed before him, he looked back at the footprints in the sand.

    He noticed that many times along the path of his life there was only one set of footprints.

    He also noticed that it happened at the very lowest and saddest times in his life.

    This really bothered him and he questioned the LORD about it:
    "LORD, you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life,there is only one set of footprints. I don't understand why when I needed you most you would leave me."

    The LORD replied:
    "My son, my precious child,
    I love you and I would never leave you.
    During your times of trial and suffering,
    when you see only one set of footprints,
    it was then that I carried you."

    Thinking of you Courtney
    Corrina x

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  110. Oh Courtney, I know God weeps knowing your pain because he loves you so much. Praying for peace and comfort for you, Courtney. What an awesome day it will be when you enter Heaven and re-unite with your sweet angel. Looking forward to meeting you both in Heaven :)

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  111. Courtney, Your words are heartbreaking. As I write this, it is the beginning of Holy Week. I think of our Blessed Mother at the cross,her heart breaking as she beholds her son, and I think of you....your cross has been so hard to bear and yet you bear it with so much faith. Your love for Tripp comes forth from every part of your being. It is love made visible to all the world. It is palpable, even through the computer screen. I know you said it is hard to even look at pictures right now, but thank you for allowing us to still see them. The pictures of Tripp are such a source of inspiration for me and so many others. I can never look at them without tears, but yet they make me smile and give me joy, even on down days! There is just something about that little man that always touches me!!! I offer my humble prayers and penances for you as I go through this last week of Lent. May your broken heart be held gently in the hands of our risen Lord and his Blessed Mother.

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  112. You will never "move on" or "get over it". Even when you are an old lady with a couple more children and some grandkids, you will still miss Tripp terribly. But you are so smart and so strong you will find your way and will do even more wonderful things. And it has only been two months since you said goodbye so you are in the thick of it right now. I too am very happy that you continue to share such an honest view of your life.

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  113. He has such beautiful eyes. Such a special gift. I know part of your heart and soul left with Tripp and for that I am sorry. I have to believe God has special plans for you. I'm so sorry for your loss and the pain you must feel physically and emotionally everyday.

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  114. Their are no words that will ever take your pain away. I just want to say Thank you for all that you have and are doing. Tripp has helped you become the person that you are and that is one amazing MOM-Person. Never feel like you should not be grieving. He will be there waiting for you when it is your time and your work on earth is done until then remember he is still with you as we all are.

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  115. Your words truly do describe how it feels to lose a child. It has been over 7 years since my little girl left my arms and it still hurts. It really is a physical pain and really does feel as though a piece of me is missing. When she was taken from my arms for the last time I literally felt as though my breath was taken away from me. I had 3 other children waiting at home for me but in the moment I no longer wanted to be in this world. I too felt in the months after her passing that things would never get easier and that I would always feel guilty for laughing or for going a few moments without thinking of my sweet girl. With time though I came to realize that she would want me to be happy and to find meaning in my life without her. I will never "move on" from or "get over" losing her but I have finally found peace. I will always miss her and probably will always play back my last moments with her wishing that she were still with me but I am finally able to (for the most part) think of her and smile, look at her pictures with fondness and look forward to when I will be with her again rather than wish that I were with her right now. You need to give yourself the time you need to heal. That looks different for each person and no can tell you how it should look or feel for you. As I said, it has been over 7 years for me and there are still days that I don't feel "normal". I don't think I ever will be the same...I don't think I can be. A favorite song of mine is "One More Day" by Diamond Rio. Every time I hear it I think of my sweet Emma. The chorus always gets me- " One more day, one more time, one more sunset maybe I'd be satisfied, but then again, I know what it would do, Leave me wishing still for one more day with you." I think I will forever wish that I could hold her in my arms again...even if just for a moment. Know that you are not alone in that feeling. You are always in my thoughts and prayers. I know what it is like to feel like you are alone and that it isn't possible for anyone to know how you are feeling. But know that you are not alone and that, sadly, many people do know how you are feeling. I pray that you will feel some comfort in that and that at some point you will be okay with being happy because I know that Tripp would want it that way. I believe that you are here for a reason and that your experience and your strength in that experience is helping so many people. You are touching lives in ways that you may never realize. Your words have helped me to heal in my loss so I am sure that they have helped others too. Thank you for your honesty and openness. You truly are a blessing.

    ~Melissa

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  116. I am so glad that You share Your thoughts with us. That remembers me what is important in this life. I do not know what to say, because nothing will take away Your pain:( I am thinking of You and Tripp.

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  117. I miss Tripp and I wasn't even his family. . . Still praying for you Dear Heart.

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  118. My heart breaks for you and this post made me cry! I still pray that Tripp is having a blast in Heaven with all the other EB angels.
    I have no words....hugs Courtney! You are one special person!!

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  119. Dearest Courtney,
    Grief is the most painful and most difficult road you will ever travel. Your heart aches so much because you love so much. Tripp absolutely knows just how much you love him. You proved it every single day of his life and that love will never, ever cease! You will forever miss him because you will forever love him. Praying for our Lord to wrap his loving arms around you and hold you ever so close! You are dearly loved and have blessed us immensely by sharing your precious Tripp with us. God bless you today and always.

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  120. Sweet Courtney....there are no words that can make you feel better. If I could take away your pain, even for a moment, I would because surely you deserve a moment of peace.

    Sending you my love and lots of hugs-
    Mary and Baby Jackson

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  121. Well there sweet wonderful lady. Those words and thoughts are very hard to read. Oh yes, you have lots to live for. You only have to see how many people (perfect strangers) have been torn to write you in your blog over and over to show their deep support and caring for your well being.
    There must be a flood of advice and a torrent of ideas that you must mull over daily. I can only imagine it is staggering to internalize all this, but I can't help but to add to the likely confusing mix.
    I hope for you that you can find help and a true vent to pour it out (maybe someone not in your direct circle), as intense it was living and fighting for Tripp's every breath the quiet beyond since his passing can only be as intense.
    I worry for you that fighting the pain and putting up the strong front may only make the grieving longer and more painful. Yes, losing a child it will likely never go away, but you have a gift of compassion and nurturance that is clear this world rarely sees. The planet needs your passion, your endurance and your life.
    There are many places I'm sure that could use someone like you. Where you can use some of that energy and divert that emptiness to help someone else and a child in need.
    Good Luck finding your way Courtney.
    We're all behind you!!
    Rox

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  122. I'm so sorry for you loss of Tripp, it is NEVER EVER easy to lose a baby, especially when it is your own. I lost my daughter Acadia Faith at 11 days old. She was born with a caudal regression syndrome (skeletal) and truncus arteriorosis (heart). She had heart surgery at 10 days old and was put on ECMO (heart/lung bypass machine) at the very end of the 7 hr surgery. During the night she ended up with blood clot and when she was given medication to relieve it she had a major brain hemorrhage to the point that the ecmo machine was the only thing keeping her alive. This all happened 5 years ago, and although the hurt diminishes, it never goes away. People will expect you to go back to your life and how you "use to be". but how are you suppose to go back to a time when that little life was never in it? they put a mark on your heart and memories in your head and you can never let those go. What you do instead is find a new you and live out your life that way. another thing you may also come across is people will expect you to grieve and "move on" in a certain timeline. Take as long as you need because everyone is different and does it in their own way. although my daughter has been gone for 5 years, there are days and events in my everyday that just hit me and can tear my heart out of my chest. Most of the time I can keep my composure, but sometimes it just hits you like brick wall. Unless you've had it happen, there will be those that just never understand where you re coming from or how you're feeling, but you will have those that will listen to you. You'll need those people. There will be a day that you can bring out his pictures again, maybe not tomorrow, but he'll always be in your heart

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  123. To my dearest family, some things I’d like to say,
    But first of all to let you know that I arrived okay.
    I’m writing this from Heaven, where I dwell with God above,
    Where there are no tears or sadness, there is just eternal Love.

    Please do not be unhappy, just because I’m out of sight,
    Remember that I’m with you, every morning, noon and night.
    That day I had to leave you, when my life on earth was through,
    God picked me up and hugged me, and said, ” I welcome you”.

    “It’s good to have you back again.
    You were missed while you were gone.
    As for your dearest family, they’ll be here later on.
    I need you here so badly as part of my big plan.
    There’s so much that we have to do, to help our mortal man”.

    Then God gave me a list of things he wished for me to do.
    And foremost on that list of mine, is to watch and care for you.
    I will be beside you, every day of the week and year,
    And when you’re sad I’m standing there, to wipe away the tear.

    And when you lie in bed at night, the day’s chores put to flight,
    God and I are closest to you in the middle of the night.
    When you think of my life on Earth, and all those loving years,
    Because you’re only human, there’s bound to be some tears.

    One thing is for certain, though my life on Earth is over,
    I am closer to you now than I ever was before.
    And to my many friends, trust God knows what is best.
    I am not far away from you, I’m just beyond the crest.

    There are rocky roads ahead for you and many hills to climb,
    Together we can do it, taking one day at a time.
    It was my philosophy and please I’d like for you,
    To give unto the world, so the world will give to you.

    If you can help someone who’s in sorrow or in pain,
    Then you can say to God at night, my day was not in vain.
    And now I am contented that my life it was worthwhile,
    Knowing as I passed along the way, I made somebody smile.

    When you’re walking down the street and I am on your mind,
    I’m walking in your footsteps, only half a step behind.
    And when you feel a gentle breeze of wind upon your face,
    That’s me giving you a great big hug, or just a s oft embrace.

    When it’s time for you to go from that body to be free,
    Remember you are not going, you are coming home to me.
    I will always love you, from that place way up above,
    I will be in touch again soon.
    P.S. God sends his love.

    ~ Unknown

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  124. To my dearest family, some things I’d like to say,
    But first of all to let you know that I arrived okay.
    I’m writing this from Heaven, where I dwell with God above,
    Where there are no tears or sadness, there is just eternal Love.

    Please do not be unhappy, just because I’m out of sight,
    Remember that I’m with you, every morning, noon and night.
    That day I had to leave you, when my life on earth was through,
    God picked me up and hugged me, and said, ” I welcome you”.

    “It’s good to have you back again.
    You were missed while you were gone.
    As for your dearest family, they’ll be here later on.
    I need you here so badly as part of my big plan.
    There’s so much that we have to do, to help our mortal man”.

    Then God gave me a list of things he wished for me to do.
    And foremost on that list of mine, is to watch and care for you.
    I will be beside you, every day of the week and year,
    And when you’re sad I’m standing there, to wipe away the tear.

    And when you lie in bed at night, the day’s chores put to flight,
    God and I are closest to you in the middle of the night.
    When you think of my life on Earth, and all those loving years,
    Because you’re only human, there’s bound to be some tears.

    One thing is for certain, though my life on Earth is over,
    I am closer to you now than I ever was before.
    And to my many friends, trust God knows what is best.
    I am not far away from you, I’m just beyond the crest.

    There are rocky roads ahead for you and many hills to climb,
    Together we can do it, taking one day at a time.
    It was my philosophy and please I’d like for you,
    To give unto the world, so the world will give to you.

    If you can help someone who’s in sorrow or in pain,
    Then you can say to God at night, my day was not in vain.
    And now I am contented that my life it was worthwhile,
    Knowing as I passed along the way, I made somebody smile.

    When you’re walking down the street and I am on your mind,
    I’m walking in your footsteps, only half a step behind.
    And when you feel a gentle breeze of wind upon your face,
    That’s me giving you a great big hug, or just a s oft embrace.

    When it’s time for you to go from that body to be free,
    Remember you are not going, you are coming home to me.
    I will always love you, from that place way up above,
    I will be in touch again soon.
    P.S. God sends his love.

    ~ Unknown

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  125. Feel no guilt in laughter, he'd know how much you care.
    Feel no sorrow in a smile that he is not here to share.
    You cannot grieve forever; he would not want you to.
    He'd hope that you could carry on the way you always do.
    So, talk about the good times and the way you showed you cared,
    The days you spent together, all the happiness you shared.
    Let memories surround you, a word someone may say
    Will suddenly recapture a time, an hour, a day,
    That brings him back as clearly as though he were still here,
    And fills you with the feeling that he is always near.
    For if you keep those moments, you will never be apart
    And he will live forever locked safely within your heart.

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  126. My heart breaks for you. My son is the same age as Tripp would be and I cannot imagine what I would do if I lost him. He is my life just like Tripp was yours. I pray you will find peace and you will be able to enjoy your life here until you see Tripp again. God bless you.

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  127. Courtney, you will NOT "move on" but you will "move THROUGH" it. Let yourself feel the pain, cry the tears and know that you truly did EVERYTHING for your little man.

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  128. i have looked through your blog, and i just felt the need to say something. now, i am athiest, so i wont be referring to religion, but i AM in school to be a therapist. i can tell you that from my education, and my own personal life experiences, that the hardest part of the healing process is acceptance. dont put on a happy face all the time; you are entitled to be sad and to grieve and to cry. acknowledging and accepting your own pain and grief is part of dealing with it. be kind to yourself and take care of yourself.

    you are being honest with yourself, and that is one of the most important things, too. keep writing- it is therapeutic.

    i wish you all the best, and hope one day you will know some peace.

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  129. Hi Courtney-- This post really hit home. Everything you say I feel. I am in the 3rd year of 'this' horrible journey and every single second aches. There is no explaining the pain because there are no words. You just cant imagine unless you are in it. Before my little girl passed even the days leading up to her going I just tried to imagine my life without her. What it would be like. How I would feel and even then- knowing it would end- I could never even comprehend how incredibly painful it would be. In the beginning I had a lot of people tell me that It does get easier. I just couldnt understand that. How could my baby not being here get easier? Maybe that is still to come but its been 2 years and almost 4 months that she has been gone and I am still waiting. What is "easier" is living with this hurt. I am getting used to this pain in a very weird way. Its my new normal to hurt everyday. Its my new normal to have everything you imagine life being totally change and I look at everything different. Its my new normal to feel heavy- tired- worn out everyday because I made it through another day without holding my daughter.
    I hate to say I am getting used to that. I feel guilty. I dont want to get used to it. I dont want it to be real. Ill never be okay with living this life without her. Everyday I imagine life with her. How would today be with a child to tot around. and everyday I would give everything in my life to be able to tot that little girl around.
    Sorry this is so long. I just can relate so much to your pain. Your missing. How unfair all this is. How just 1 more day would mean the world to you. I am praying for you and for Tripp everyday.
    Love Kendra

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  130. Stephanie's response above couldn't be more true. I don't think a day shall go by that you won't ache for your baby, but I pray that God will ease the pain for you over time. You are one of God's very best soldiers and he chose you to do some important work, which you have already begun. You & Tripp have raised so much awareness for EB! Many prayers for you and your family!

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  131. Courtney my heart aches for you, i pray that you may find the comfort thru good to get you thru day by day, i thought i would share this blog with you. know you are not alone
    http://jacksonparkcity.blogspot.com/

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  132. I cannot imagine what you are going through and wont even begin to try. There is no "getting over" the death of child. You just move on as best as you can. No one has a recipie for "how to mourn" you do what you need to do and how you need to do it. Just as god guides us in the good times, he guides us in the sad.
    Thank you for sharing yours and Trips life. I have learned many lessons with you on this journey that I will take with me and never forget.

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  133. Still thinking about you both and praying for you every single day.

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  134. You see all those comments? We miss him too, you shared him with us, and we grew to know and love him. No words can help you at the minute, you need to grieve, let it out, but remember, his memory lives in all our minds and hearts. Luck & Love to you and your family xx

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  135. My little girl would be turning five in June, starting Kindergarten in the Fall... I just wanted to tell you - from a mama a little further down the path - that every word you said resounded in my heart, every feeling you have is true, and to remind you, sweet girl, that God is big enough to keep on carrying you through the days to come. I know it seems impossible now and like an eternity - oh how I do - but one day, you too will look back and see how God has carried you and worked in your life and brought you five - ten, fifteen, twenty - years closer to home and your boy. Hold on. You're making Him so proud. ;)

    Psalm 139 <3

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  136. You have been on my mind all day - like you are everyday. Hope you are doing okay! I miss your little guy so much and never even got to meet him! Praying for you Courtney!
    Kelley

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  137. Oh your precious heart! How I love your precious heart! I love how you make me see, think and feel from your perspective. I agree with Stephanie (from comment made 4/2/5:59pm).

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  138. I can't even imagine what you must be going through. You are such a strong and amazing person. Tripp was so blessed to have you as a mom, and you are so blessed to have him, such a strong and wonderful angel, watching over you. I will continue to keep you in my prayers.

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  139. Every part of me wants to do something for you, but I know that I can't do anything to change this situation, nor make it better now that Tripp is with God. You have made very clear statements to "things" I have always wondered, yet ... I have no satisfaction in knowing that I understand more about love and life by your hurting. Again, I am so sorry for you loss. It is just one day at a time from here, Courtney.

    “Blessed are those who mourn, for they shall be comforted.” Matthew 5:4

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  140. Dear Courtney,
    your words are heartbreaking and truly describe how if feels to lose your child. I wish so much that we could all take a part of your pain and heal your heart, but as you said you can't fix a broken heart. It feels like your heart is gone with your child.
    There is no way to move on and when I was told this in relation to my daughter I felt really insulted only at the idea that somebody might think I could move on without my child, like if she had never existed. You are just slowly forced to learn to live with the presence of your child in another form, that of an Angel. You will live and function like a human being, but your life will be forever changed. In my case I learned to be able to laugh and do fun things without feeling constantly guilty also because I have told myself that Angelica would have liked to see me happy and I think I owe it to my other children as her loss it is not their fault. And with time I started to feel her presence in a special way it is difficult to describe. But I am not the same person anymore. I have often an underlying sadness and I am much more fearful in general, especially in relation to the well being of my other children. Some days or events make me cry and feel really bad. It's a roller coaster. Your journey with Tripp was amazing, full of unbearable pain but also full of unconditional love and of many precious moments with him. You devoted yourself to him completely and did not take any day for granted. You knew each day was special and managed to record his fantastic nature and talent through pictures and videos. Every time I see his amazingly good-hearted eyes, his adorable chubby cheeks and his heartmelting smile I feel tears in my eyes but at the same time he's such an inspiration and brings me so much joy. Because of him I managed to build such a magic relationship with my nearly three years old daughter who did not want to hear from me for months after I had to be on bedrest with her younger brother. Because of you and Tripp I feel I am a better mum and a better person. Thank you so much for continuing sharing his pictures with us, especially at a time when it is so devastating for you. I miss him so much without even having had the opportunity to meet him in person, I cannot even come close to imagine how it must be for you. I pray for you daily for peace and to Tripp for supporting you in fulfilling his mission. I will be on your side.
    Kisses,Talia

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  141. Courtney, my heart absolutely breaks for you. I wish there were something I could do or say to help you. One thing you should take notice of though .... I'm seeing that you are very much so not alone. Look at all the heartfelt comments. Any one of these folks would gladly jump to help you, I'm sure, if you ever need to reach out. I know that does not help your heart to stop hurting ... but hopefully it helps you to feel if you need help or an ear or supportive talk, just reach out. Peace be with you. You were the best mother, and Tripp knew that and loved you so. Take care.

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  142. I really like this post that you wrote but I am so sorry that you had to write it, that you had to feel this pain. I too lost my son and it feels good to know others have the same thoughts and feelings as me (not so alone). I had my son at a young age (19) and he died at age 4. I have since had two more children. I see it as being on a teeter totter. On one side, I am with my living children and missing my son. On the other side, I am in heaven with my boy and missing out on my children's lives. No matter where I am my family will never be complete and I will never be able to be with all of my children. It is hard and I'm sorry you lost your precious son.

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  143. Your post brought so many things to mind. I lost a son and daughter after terrible illnesses and I think I feel with you. I was so busy caring and loving them that when they left I had way too much time [as I am sure you feel]. The hardest part for me was knowing so few people would remember them. You know Tripp touched so many lives and your blog brought his life and your journey together to so many others. We will NEVER forget your little man. a hug from Ohio, wendy

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  144. Just coming by to see how you are! Still thinking about you and Tripp often! Hope you have a good day with your angel watching over you!

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  145. Courtney,

    I found your blog today for the first time and it has touched my heart. I have felt pain in my life, but nothing like what you have gone through.

    Thank you for your faith in such a difficult place. It is strong and beautiful like a glittering diamond. It has come from a dark place and withstood more pressure than most people could stand. Every day, you have died to yourself so that your son could live a life full of love. Your tender heart felt every pain that he felt but you were so brave to trust his life and death to God's hands. Thank you for writing about your journey.

    Keep writing and keep clinging to God. He is with you in the continuing darkness as you grieve. Your little boy is in Jesus's arms, where there is no pain, no darkness, only perfect love and joy.

    I pray that you will feel that love too, even in the middle of your intense pain. That you will feel the comfort God gave your son in his last days. That one day you too will be able to see the beautiful rainbows of God's light that your faithfulness has shone on the world.

    Thank you!

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  146. Thinking of you today Courtney and Family. Thinking of Tripp and sending love to you all x

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  147. I am so sorry Courtney. I'm so sorry for your broken heart. Everything you said makes perfect sense. There's no fix for it and that just plain sucks. Sorry to use crude language, but that just describes it best. I continue to pray for you and will keep checking back often.

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  148. I dreamed about you and Tripp this weekend. Tripp was 4 though in my dream and you guys were at a Burger King of all places. Just wanted you to know that you have been on my mind all weekend and I have been praying for you.

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  149. I had come across your blog sometime ago and was very touched by you and Tripp. I'm so sorry to hear he's passed. Thank you so much for sharing him with us. <3

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  150. Thought you might want to read this. <3
    http://liveactionnews.org/opinion/i-wish-hed-never-been-born-the-misguided-view-of-abortion-as-mercy-killing/

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  151. Praying for you. My mother once told me that God can heal the broken hearated, but he wants all the pieces. I can hear the pain in your words and I am continuing to pray for God's best in your life.

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  152. You are such a strong woman, i´m barely starting this journey with my little 3 month old baby, and thinking back about those nights he wouldn't sleep and how i used to complain God! you made me realized how weak i´ve been, i feel so miserable about the way i´ve been acting shame on me! You are an example to follow for moms like me that complain over nothing, now I now God wanted me to run into your blog to make me realize. Thank you very much for sharing your experience you are an Angel in all aspects you were that angel for your little Tripp, and i´m pretty sure hes watching over you up there. God bless you! THANKYOU!

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  153. Your heart will never be complete again until you see Tripp in Heaven. My heart broke the day my son, Dexter, died in my arms. He was only with me after he was born for 11 hours, but I definitely tried to fit a lifetime worth of love in those short, precious hours. The 'physical' grief is hard. Hold to your faith & never apologize for having to do what you need to do.. cry, scream, yell, hide.. it's all a part of a very personal journey. God Bless You.

    Leslie Matteson
    http://throughgreyskies.net.tc

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  154. I'm sitting here with my 3 year old, who is only a month older than Tripp and 8 months pregnant with our second...I can't stop crying as I read your post. Especially the line that said "I wanted to go with him." I can't even imagine how difficult it is, I'm just praying and praying for you. I wish there way something I could say or do for you that would make it better...but I know God can comfort where arms don't reach and pain where the eyes can't see. I know that the Bible says, "The LORD is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34:18.

    Know that I'm going to keep praying for you and I'm sending you all the love imaginable friend.

    Tiffany

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  155. thinking of you & praying for you.

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  156. My prayers are with you! I love reading your story and think you are such an inspiration. I have a company that makes glass lockets that hold birthstone charms. www.glockets.com! I am sending you one with an emerald for sweet Tripp.

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  157. Thank you. Your baby boy is so cute. And having just gone through a loss, although not a son, of my brother, you said everything so perfectly. And I just wanted to thank you.

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  158. My heart goes out to you. I pray for you every time I see an Elmo. Love and hugs to you from across the miles.

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  159. Thinking of you tonight... you and your sweet Tripp stay in my heart. I am sure as the days pass it is not a bit easier. I wanted to tell you that you are one of the biggest inspirations of my life. Thank you for sharing your story, your journey, your beautiful baby boy with us. Your love for him and his love for you is something that I am honored to witness.

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  160. May be it is a little too early to tell you that you will be better, as time heals pain.
    I came across your blog yesterday, entirely by chance. I had never heard of this illness before.
    I am 45 and given up any hope of having ever a child of my own-that is my problem. Which I think that I have come over but always comes up some times.

    I wanted to tell you that by the way you write, and by your face when you kissed him... I dare to say that you are the kind of people that I call saints.
    Please, accept my hug, and my thanks for knowing that there are people with hearts full of love, like you.

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  161. I know just what you mean when you say you no longer feel afraid to die... I feel the exact same way after losing my own son last January. Whether I'm here on Earth, or I die, I'm with people who love me.. The thought of not being able to live my life no longer scares me. I look forward to the time when it's officially "my" time and I can be with my son again.

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  162. Great Job on this Blog. God Bless that baby and you. I have joined your site and if you would join mine, I would love that. http://darlascraftspecials.blogspot.com Thank you.

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