Sunday, February 5, 2012

A little piece of my heart.

I'm struggling with finding the right place to be.
I think I've come to the conclusion that I've been too strong for too long.  That's the only thing that makes sense to me right now.  For exactly 2 years and 8 months I had to put on my happy face, I had to "suck it up," and I had to pretend like I was okay (and with Tripp here, that was so easy to do)... but now, I feel like that's the only thing I know how to do.  I am still trying to put on my happy face (mainly because I hate to think that people feel sorry for me) and trying to pretend like I'm okay. 
I think I'm still in "you have to be tough" mode.

Except I don't WANT to be tough.  I want to cry, I want to grieve.  My body just won't let me do that right now and I'm not sure why.  I think I'm trying too hard to keep busy and do things because I'm scared of finding a new "normal."  I don't want a new normal.  I know the grieving will come, I'm just wondering how long it will take for reality to set in.  I don't want this life of being able to do whatever I want.  I don't want the life of not having my baby to take care of.  I don't want this feeling of guilt every time I smile or laugh without my baby.   I want to be smiling and laughing FOR him.  I want to be able to talk in my "Tripp voice" again and make him chuckle.  I would literally give anything in this world to have my life back... my life with him- minus his pain.

I've been thinking a lot about my faith and the fact that I have so much trust in the promise that Tripp is with God and in a better place.  I'm just so thankful for that.  I just can't imagine going through losing a child and wondering where he or she is and if they are okay.  I also think that has a lot to doing with how I am "grieving."  Not that it takes away the pain of not having your child in your arms, but it helps tremendously with any concerns that I would have about whether or not Tripp is okay.  

The homily and readings in mass today were about suffering and why Jesus would allow bad things to happen to good people.  And the bottom line is... that we don't KNOW why God allows these things to happen.  We can speculate, but we don't know.  We won't know until we are able to ask Him ourselves.  But what I do know is that God never left my side.  In the dark times, and in the happiest times...He was there through my family, friends, and the relationships I made, He was there through all of you guys, who have been and still are the best support system I could have had.  And He was there through my little angel- who's smile gave me more peace and happiness than I could have ever asked for.  

Do I think that Tripp was part of God's plan for bringing people closer to Him? 
I absolutely do.
And as tough as it is, I'm still trusting in His plan and praying that He will lead me where I need to go and lead me down the right path in these upcoming months and years. 
I know that I will write a book... I know that I will continue to blog... and I know that I will fight for EB for the rest of my life... I'm just not sure yet how I'm going to these things when a little piece of my heart is missing. 










Love,
Photobucket

239 comments:

  1. I think you are such a strong woman and I admire you in so many ways. Everyone grieves on their own time and in their own way. You WILL make it through and write the book that will tell so many stories and help tons of people! Just keep on keeping' on :) You're doing an awesome job!!

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    1. I can only imagine how disorienting it must feel to wake up each day without Tripp here physically. I will be praying for your new "normal" to come as gently as possible.

      And happy 23rd day in heaven to you Tripp! Can't wait to meet you one day on the other side.

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    2. http://www.rd.com/slideshows/the-best-life-stories/#slideshow=slide12

      Congratulations Courtney!!

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  2. Boy, I can relate to everything you wrote tonight, Courtney. Let it flow, let it flow. If you feel the need to be busy right now, be busy right now. Like you said, you are so used to that mode of strength, it is literally a habit for you. Just trust that when you want to stop moving and break down and crumble into a million tiny pieces, your friends, your family, and you faith will be there to help scoop you back up and put you back together... minus the piece of your heart that will remain missing. Ain't no way around it. I remember being pretty much in a form of shock for at least a month, and then as the shock slowly wore off, I could only really function at 1/4 to 1/2 of my normal physical and mental ability... for quite a while. I'm glad (as I'm sure many will be) that you will continue to blog. Some will leave, but most will stay, because YOU are pretty inspirational, too. Much love, Tim & Angelique

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    1. will there come a time where you write about Tripp's journey from this life to the next? not now, not in graphic detail, just if you were able to know it was coming & if it was everything we've been praying it would be. not that it would be "good" but that there would be PEACE for EVERYONE and that Tripp wasn't suffering more than the usual skin pain. i'm asking not so much out of curiosity as just wanting to know if those prayers were answered.

      in any case, i continue to pray for you & your family as you find your new normal.

      tonight i said what may be GOODBYE to my last living grandparent, just 8 months after my uncle killed himself. and as hard as it is, as TOUGH AS THIS NIGHT IS, i've been telling myself that if you could get through these moments having lost your only child, i can get through them with what we're facing tonight.

      let me know if i can do anything for you.

      love in Him,
      michelle

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    2. I will definitely stay here. I just wish I could help you somehow.

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  3. Sending some prayers and hugs to you. <3 Tripp looked so happy in these pictures. I know he is in Heaven watching over you all, no longer in pain. Nobody can replace him and he will never be forgotten. God Bless you!!

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  4. What a sweet, sweet boy! You both were so lucky to have each other. I'm sure Tripp is happy now to be able to look down and see the beautiful, amazing mother he has. You are a very inspiring woman, Courtney. Good thing are going to happen for you! I continue to keep you & your family in my thoughts & prayers <3

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  5. It will come and go in waves. Be gentle with yourself and ride those waves. Your love is eternal, you will never lose it.

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  6. I've been following your blog for quite awhile now, since Tripp was a baby. I've never commented before, but thought that I might be able to offer some "experience" I guess. I should say I wish with everything in my heart that I didn't have to understand the pain of losing a child. My 3yr old son Landan died on 2006 from Meningococcal Meningitis, he died 23hrs after being admitted to the hospital. Landan was my only child at the time, I felt then & still do that he was my sole mate child. We had an amazing connection that I never thought was possible to have with your child. Like you & Tripp.

    Going from being with your child every second you had to nothing is ... well, I don't think I can describe the pain & emotion behind that. But I know I don't have to because you understand.

    Don't ever be hard on yourself about grieving, because your right - I will happen. Some people say the second year is worse than the first because your practically in shock the whole first year. The second year you feel more of the raw emotion. But no one person has the same journey through grief. My journey is mine, and yours is yours. I don't know if you have an support groups near you, but it was a life saver for me. Something about being in the same room with people who understand the loss of a child is so powerful. You realize that the thoughts you think are crazy, are actually shared thoughts with others who've lose a child.

    Anyway, I feel like I've kinda rambled on & on. Hopefully something I said has made some sense. It will be an amazing, amazing day when we meet our precious little boy's again!

    - Lacey
    www.angellandan.com

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  7. There is no right or wrong way to grieve. Take each day, each hour as it comes and handle it the way that feels best. God is holding you close to His heart and will be there to comfort you, sustain you and walk each step with you. You are in my prayers.

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  8. Dear Courtney, You are doing everything right. There is no one path to grieve and honor Tripp. I can't imagine the shift it's been for you. So hard. Please know that your readers are still thinking about you and Tripp. I hope you keep connecting with us. Keep talking, we are listening.

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  9. Almost everytime you post a blog I see them right before I start my night time prayers (which always included you, your family, & it used to be for God's Will for Tripp & to take away his pain in suffering in whatever way that may be) and I want you to know now that I will still continue to pray for you and your family, but now I have been praying TO Tripp. I remember seeing that in your blog a while back and it makes complete sense. He's was an angel sent from heaven, why not ask him for guidance or with help spreading the faith and love he spread everyday?
    I want you to know your words touch me and my life everyday and every night and I know they do the same for thousands of others. You're amazing Courtney, truly amazing.
    Casey Sanchez

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  10. courtney, you are in my thoughts and prayers. i carry you in my heart and my mind and have done since i first read tripp's story. God will not leave you and He will walk with you and carry you when you need Him the most. Take each day as it comes, breath by breath, munute by minute and you will get through it. Your love for Tripp will carry you high and we will support you in anyway that we can. And now? Just be: do what you need to do, be with those who love you and just keep on breathing. That piece of your heart will always be missing but the rest of your heart will beat on, getting stronger, in time. much love x

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  11. Your strength & courage is overwhelming. I too lost a child & was also in strong mode. I felt as if everyone else's life had moved on & I was alone trying to find a happy place again. Every smile & every laugh, I would feel an overwhelming sense of guilt as if I didn't deserve to be happy without my baby boy. The strength & healing that you receive after losing a child is all the more proof that there is a God and he is healing everyday. Otherwise, how else would we breathe each day after losing our children. Take your time my dear. Heal as you want to, grieve as you want to, & be strong as you want to. Trust me, it will get easier to breathe, smile, laugh, & love again. But it takes time & that hole in heart, that little empty spot, well, that stays. I've had three other children since I lost my Kody & life has gone on but I still miss him & long for his touch & smell everyday. Of course bringing home babies always reminded me of that strong love, that unconditional love that no one who hasn't become a parent could ever understand. I know your little man is with God, pain free & enjoying eternal happiness in the kingdom of heaven. I wish you all the peace you can find in knowing that you were and are and always will be an awesome Mommy & most important Tripp's Mommy! A baby that made a difference in this world but never knew he was doing it. A true saint!

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  12. He's so beautiful! I love seeing the pictures of him smiling! Such a blessing. I pray that God gives you strength and helps to heal your broken heart. I hope you continue to write because you are still very much and inspiration, Momma! Love and prayers!

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  13. honi, you're so smart! you're recognizing with a clear mind where your head is right now. you know you should be/ want to be grieving, but you just aren't yet. that's normal. the first phase of grief is denial. you're still putting on that brave mommy face because, though you know it happened, your body is in the first phase of grief. see here:
    http://www.ehow.com/list_7621271_five-phases-grief.html
    it'll come, when you're ready. just trust God, because he doesn't give you more than you can handle, and maybe he's waiting to give you this for a reason. you're dealing with this in the time frame that you're ready for. don't worry about what's to come, just deal with stuff as it comes (maybe with a little prep on stages of grief so you're not surprised and know what to expect). the only thing you need to be worried about is how you feel TODAY. you'll have good and bad days. if it's a sad day, know that you're supported and that it's ok to feel the way you do. if it's a good day, and you're laughing and smiling, know that your baby is up in heaven smiling with you. you'll never be smiling or laughing without him, don't you worry! you've been so strong for him, and if he wasn't old enough to understand that before, he knows it now. and i just have this feeling that he's up there supporting you, and i know he just wants you to be ok and happy. you spent his whole life giving him strength, now it's his turn to do it for you. he probably knows better than you do how you feel, and i just know that he's going to spend the rest of your life fighting to give you strength. so don't you worry, baby girl. you will go through all of this when you're ready, and you will be fine. didn't you see the strength of the little angel you have on your side? :) sending lots of prayers your way, love.

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  14. You are such an inspiration. Because of you and especially Tripp, I have decided to come back to my Christianity. Don't get me wrong, I am married with a daughter and am not a bad person. But reading and getting to know Tripp through you, I feel like a part of me is missing. And it's God. Thank you for being so strong and sharing everything with us. Tripp is still here with you, and he is completely pain free :) I hope I can be half as good a mother and person as you are

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  15. Still here and praying along with you, Courtney. I believe that God has a plan for everything. Usually we don't understand and then something will happen and it will click in your head - if not for, then...And you just have to smile at the wisdom of God.
    I will be so honored to meet Tripp when the Lord calls me home!
    Many of us are still praying for you, standing in agreement with you.


    By the way, I have found when the anger part of grief comes, that a place in the country and screaming and crying did wonders for me. Having what my grandma would call having a hissy fit.

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  16. You are an amazing person and so much more to all of us than you know. Yes we know of you because of Tripp, but we love you because of you. Your love and compassion, your caring, your wonderful personality is what kept Tripp with you for so long. You don't need to wonder what to do, you just need to move and the lord will show you the way. We will be here when you are ready, and more inspired than ever to do everything we can to help you in this fight. I pray for a little comfort and peace for you every day. We do not feel sorry for you, We hurt for you and grieve with you. You are strong because god made you that way. But when you grieve if it seems too much to handle at times, you can call on us. We will be here with you for the rest of your life. With love, respect, and the greatest admiration, Yours and Tripps ARMY

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  17. My heart aches for you... God is faithful to those that are faithful to him, and you my dear are so faithful! It would be so easy for your aching heart to be angry with Him... I continue to pray for you and all the friend and family that are grieving Tripp. Lots of love to you!

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  18. Dear Courtney -- thank you so much for continuing to share your heart with us, even through the pain of your loss. We are all still here supporting you and loving sweet wonderful Tripp. I, for one, still think of you both everyday -- now even more than ever. As I have said before, that little guy has a permanent place in my heart as if he were one of my own.

    And you, Courtney, are one amazing and inspirational mama and human being! I have no doubt that you will CONTINUE to be a powerful force in the fight against EB. Because of you, I've already educated dozens of people who have never even heard of EB before.

    For now, please take all the time you need for yourself to grieve. And know that we are all here ready to listen to (or rather, read) your words and to support you.

    Love,
    Janice

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  19. You are such a beautiful strong courageous woman. Tripp is so proud of you for everything you have and continue to do. He will guide you through everything that you need guidance through. He knows his mommy took such good care of him and he is going to take care of you now. I came across your blog a couple days after Tripp passed away and am now a frequent visitor to your blog and other EB parents' blogs. I have told so many people about EB. Each and every one of you, these children, and all of your families have become such an inspiration to me. I hold all of u close to my heart and pray for you daily.

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  20. When I lost someone I loved, I remember wanting to cry, but afraid that if I started, I would never be able to stop. I was afraid if I didn't put on the strong face that everything around me would crash. I remember feeling so lonely even though people were there. I remember feeling like I was walking in a sense/ state of mud, slow and heavy, while the world around me moved at normal speed.

    Everyone grieves differently. Everyone has their own time scale. You will find it in your time.

    Know that you are in so many peoples thoughts and prayers right now, tonight, and every day.

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  21. Courtney, you are exactly where you are and where you need to be. You are grieving. It is a day to day minute to minute process. No right or wrong...just without a doubt a sorrowful time. Without a doubt, I'm certain you are feeling an abundance of love you want to give but can't find it's destination. Your love is so special and so many have been drawn to it- to observe it- in wonder and awe. Thank you for that. Thank you for sharing. Take all the time you need now. Be "weak" be angry, be vulnerable. You deserve to stop and be sad. I know that you know how lucky you were to be Tripp's mom and how lucky he was to have you. I also know there is so much that doesn't make sense or seem fair. so be pissed, be sad, get angry....grieve. And live and feel your life now. Your really special, and while we all wish the circumstances were different, your and Tripp's journey is with so much beautiful purposse...
    I don't know you but I think of you and how you are doing every day. I send so much love your way. Thank you for continuing to share and know you are so loved...right now and always. Break some plates, punch a wall, scream, cry and keep being a kick ass girl. Much love,
    Meredith B

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  22. Courtney I am so happy you will continue to blog.A book would be a wonderful way to honor Tripp, help you to heal, and spread the message about EB.You are and inspiration of love to many peeople.I am so thankful and blessed I have been able to follow your journey with Tripp.He is in Gods hands now which makes all things possible.Much love, Jimmy

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  23. thank you courtney, thank you from the bottom of my heart for sharing your story, and keep sharing your emotions. you are in my thoughts and my prayers constantly. You are a true inspiration, and Tripp was sent here to suffer just like Jesus, for a reason. He has brought me and hundreds of other people close to God. That angel of yours has shown us true love. We are better persons because of him, because of you. His work here is not done, he will keep impacting lives worldwide. He is happy and watching you from above. A hero, an angel. I love that boy, and my heart aches that he is gone. I cannot imagine how much it must ache you. But grieve, comes in many different forms. Maybe God, is by your side, keeping you strong still, giving time to the rest of your family to go through their own grieving process, before they have to comfort you and support you. You are being strong again, for all of us. But we are all here for you, we love you, and we think of you daily. Grieving will come at its own time. And maybe it won´t come so strong, because you know, that Tripp is happy, pain free, proud of the work he has accomplished in just 2.8 years. Thank you Courtney, thank you. I am in the process of making something for you, but it might take a while to be finished and shipped across the atlantic. I will email you when its off to find you. Thank you. Be strong. And if you need to break down and cry, your family is there for you. I wish I could be there for you to hug you. I love you Courtney, and I don´t even know you. But I am a better mom because of you. Thank you.
    Christiana

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  24. Courtney, I just love you the WAY you are. You inspire me more than you will EVER know. I will read your book, and keep following your blog and pray for you every single day. It's ok to not know what to do or "how" to be without Tripp. You can just "BE".

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  25. Courtney, your courage and strength is amazing! Nothing I could ever say could take your pain away. It's amazing how I've never met you. Yet I mourn with you. I have cried daily over this and prayed for you daily. You and Tripp together has struck such a deep spot in my heart that I can't explain. I so badly want to help take your pain away. You are such a inspiration. Theres no right or wrong way to "grieve" so take it day by day and don't feel like you're on a timeline to feel a certain way. I told my husband a while back that I hoped one day you would write a book and you better believe I would stand in line to get one. You will be the most amazing advocate any organization has ever known. Please keep the blog going you inspire so many. My only way to help that I'm within reach of is the baseball tournament! So my family of 6 will be traveling about 6 hours to support you and in that! We are excited to have a way to help! Many prayers- Amy Pruitt and family.

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  26. Holding back your tears is not the answer Courtney. Let them flow like the Nile River. LRelease that pain. In 2003, I lost my first born daughter to SIDS. Fortunately, she was not in any pain, but the pain of her loss is greater than any pain I have ever experienced. I know Tripp endured pain, but take a look at his pictures. You can see God's blessings all over his little face. He was so full of life and laughter despite what he was going through while he was here. My heart warms up every time I see his picture because I know he was sent here for a reason. We will never understand the reason behind God's will, but we know that His will has a purpose. Little Tripp's life has brought awareness in Louisiana, and hopefully nationwide, to EB. EB is not something anyone should sweep under a rug and the more people are aware of this illness, the more we can fight for the lives of these precious babies. Although I do not know you, I feel we have a bond through our losses. Despite our losses, however, we have gained guardian angels who will always be here to watch over us. You are truly an inspiration to all mothers. Shine on Courtney, shine on!

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  27. Take your time, Courtney, be slow in this healing process. Maybe it would help you to write down grieving stages and put a tick everytime you think you are over it:
    1) Shock and denial
    2) Pain and guilt
    3) Anger and bargaining
    4) Depression, reflection, loneliness
    5) The upward turn (less physical pain, life more calm and organized)
    6) Reconstruction and working through
    7) Acceptance and hope

    You see, acceptance and hope is inevitable. Everytime you feel sad just think about how close you are to this last stage.

    Thank you for never-seen-before pictures of Tripp, I also miss him.

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  28. Most of us can not imagine the pain You are going through, but I am sure You will heal in time. I am so glad that You will continue the blog. We will never forget Tripp.

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  29. All i can say is you have taught me to be grateful for the smallest (yet largest) things in life. I am a better person for your sharing you life with me.
    Thank you more then words can express...
    Im so sorry for Tripp's departure from earth... But you will be with him and he with you for ETERNITY.
    With love and respect...
    Nicole G.
    Ferment, CA

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  30. You are an amazing woman for what you have done. And my heart has been aching for you. There hasn't been one day I haven't thought of you or Tripp, and I cry every time I read your blog. I wish with all my heart I could fix this for you, that I could send him back to you. Just know how much people care about you and hose many people Tripp has touched. Stay strong.
    Amber, UK

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  31. There will come a day when you know exactly what to do and how to do those things. God and Tripp are watching every single step you have taken and will take, and I KNOW they're as much proud as I am - as WE ALL are. You'll find your way to grief - I promise!
    Just listen what your body and mind are saying for you. If you need to be busy, you are. No one can come to tell what to feel and how to feel. No one! No one - ever - know how do you feel. But still, you're NOT alone.

    And yes, you and Tripp have got me closer to God. You and Tripp are getting me to my knees in front of God and praying first time in my life. I am thanking god for every single second of mine and my family's life. I am praying the same peace for YOU as I prayed for Tripp. You have earned it as much as Tripp has. Remember that.

    Love, Heidi and Eeli

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  32. I especially love that last photo of Tripp outside, just enjoying life. I know he's up in heaven right now with that same cheeky grin and those sparkling brown eyes. He's looking down on you now and forever...until you meet again.
    I'm glad to hear that you'll write a book. I look forward to reading it.
    I'm praying for your comfort.
    Love, Jennifer

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  33. Hello,

    I`ts difficult for me to wright in another language but i hope you can read it.Youre such a lovely en sweet mother and tripp knows that.That`s why he always was happy(and still).My candel is burning for you.
    xxx

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  34. Courtney,

    As I have written to you before, you are amazing lady and my hero! Tripp will live in our hearts always and although I live in Finland and never was so fortunate to meet your little man, I have been thinking about him every sigle day, when I look my own children. And some day you can tell to your baby about the brave big brother, who changed so many lifes and was one reason that cure was found for this horrible disease! Many hugs to you Courtney!

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  35. Courtney,

    As I have written to you before, you are amazing lady and my hero! Tripp will live in our hearts always and although I live in Finland and never was so fortunate to meet your little man, I have been thinking about him every sigle day, when I look my own children. And some day you can tell to your baby about the brave big brother, who changed so many lifes and was one reason that cure was found for this horrible disease! Many hugs to you Courtney!

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  36. Courtney, You are so used to be being a pillar of stength Courtney, it will take time for you to learn that you dont have to be so strong anymore. People will feel sorry for you, but not in a negative way. We feel sorry for the pain Tripp endured and that he passed too soon, we feel sorry for the loss and pain you and your family are experiencing now and we feel sorry that we couldnt do more for you both. Accept that there are so many people that love you that want to be there for you and will help put you back together again when you feel ready to stop being so strong because they want to. Tripp was a child in a million and your bond with Tripp was such a strong one that there will always be a piece of your heart missing there is no way of getting around that but You have documented so many beautiful memories of Tripp that you will be able to cherish for a lifetime.
    The photos of Tripp are beautiful he truly had the smile of an angel
    Corrina xx

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  37. When the time comes, you will break down and you will fall apart and cry, and that's okay. I know Jesus is waiting to hold you and comfort you in the way only He can. I'm glad you that you chose to continue blogging and sharing your journey with us. You, entirely, are an inspiration to me to continue striving to be a better mom and a better person. It is a great comfort to know that even if this very difficult time you hold close to God. You're so right, Tripp is in the best place and he is more than okay now. It will be okay. You will be okay. My prayers are still with you.

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  38. I think you are a very strong person take time for yourself to grieve though and know that someday you and your "Lil Man" will be together. Your family and you are the greatest people I have come to know. Thank you for sharing all the things in your and Tripps life he was a special little guy!

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  39. Hello Courtney,
    If you want to cry you should do it, it makes you feel much better and if you want to smile do it, Tripp we´ll be so happy to see you smiling, don´t feel guilty for anything whatever you do, you are just amazing!!
    I am very happy that you´ll continue to blog and for sure I´ll continue to read it and try to help you in anyway I can (although I am quite far)
    Big hugs
    Cristina (Spain)

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  40. That smile and those cheeks! Gosh I love seeing that face. Nothing will be "normal" for you Courtney because you are extraordinary! Still praying for peace for you.

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  41. Loving and praying for you Courtney. And you are still doing so much for him. My prayers and thoughts will be that you will feel close to him even in his absence.
    Love,
    Laura V.
    Germany

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  42. Maybe it isn't the same but my mom/best friend died last March. A month later I was in London on vacation then went on just kind of numb until summer. Then it hit and I got depressed and it was awful. Only in the last month have I felt like I can breathe without hurting. Grieving is weird. I have cursed every person in prison for living while my mmom is dead, gotten angry at her, all kinds of things. It is important to let all those thoughts and feelings just come and go without feeling guilty. What you are doing IS grieving and it is what is right for you right now.

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  43. I don't know how and I don't know when it happens, but it (a new normal) will eventually happen. I lost my first child when I was 7 months pregnant. I developed a quick on set of severe pre-eclampsia and there was nothing that could be done. I continually asked "why" and wondered when I would feel normal. Somewhere overtime, the anger and pain subsided. I don't know that it's gone entirely. I still grieve for my daughter that I'll never see grow up. But I cherish the fact that I was her mommy for the short time she was with us. Everyone grieves in their own way and with Tripp's passing your life has been thrown upside down, it's okay to just sit back and say "it will happen in its own time." We're all here for you.

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  44. Tim and Angelique said it perfect! No-one knows when the grieving process is going to happen. For some, it happens fast and for others, it happens very slowly. When it does come, you will be at your weakest point.. I'm sure. That's when your family, supporters, and faith will be your strength. TRIPP, will be your strength. I will continue to follow your blogs, as I do Tim & Angelique's and the rest of the EB parents. You EB parents and children have inspired me along with SO many others. I check in with you "Daily". I have not felt sorry for any of your stories. I have felt something totally different, the love and connection with EB parents & their beautiful children.. You are a "God Send". You have given me the strength that I couldn't have found from anyone else. Since reading these beautiful stories/blogs, I have been inspired and touched so deeply, I am pursuing the Neonatology nursing field. I hope to personally meet children with these needs so I can also "keep on keeping on" the fight for this disease. Thank you Courtney, for giving me that strength. And thank you Tripp also. Prayers and lots of love to you and your family and also the rest of the EB family! I love all of you!

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  45. I wish there were words to make this better. I still pray for y'all every night just as I've done since I first read your blog many many months ago. Tripp has brought people closer to God and helped people hug their kids a little tighter. He is a beautiful angel. Thank you for sharing him with us.

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  46. oh courtney, my heart literally aches for you. I have a sick baby too. completely different from baby tripps but she is 8weeks old today and has never come home. you give me strenghth to be the best mommy for her that i can...thank you for letting tripp be a part of our lives. the world is a sweeter place because of tripp :-)

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  47. Courtney, You are so special, god's plan is evident, you and Tripp have brought faith and love to so many people. I can't began to know how you are feeling and what you are going through but I know god is leading you through this journey and he will continue to comfort you. I think of you every day and at the end of the day I know the love you are surrounded by is making you stronger. {)i(}

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  48. Courtney, Bless you. It must be so hard to go on without Tripp. Know that there are so many of us following you, holding you up, praying for you. Not because we feel sorry for you, but because we love you and we love tripp even though we've never met and because you would do the same for us. It's ok to not be ok. Sit and just be, and when the sadness sets in know that trip is holding your had, FINALLY running around and playing and dancing with elmo- pain free. Tripp's suffering has ended, someday our suffering will end to. Today just isn't that day. Today is a day for you to feel the love, and finally let us take care of you.
    Sending all our love
    Stephanie Lawler

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  49. That's right ... you have a whole army of love, support, and prayers out here, but I know you still need to hear what God wants for you to do next. We all pray that as He comforts you, and that comfort sets in deeper and deeeper, you can accept that new "quasi-normal." God bless you and your family. (Matt, Severn, MD)

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  50. We are all here for you Courtney! And for Tripp! And for all the others who have and are suffering from EB. You have forever touched my heart and I have made it my mission to help spread awareness.

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  51. Courtney I am so sorry for your loss, as a mother who also lost a child words can't decribe the pain I know your going through. This post touched me SO much, because just like you, after I lost my daugther my body wouldn't allow me to break down. I lost my 4 1/2 month old to a freak accident, something I never saw coming and wasn't ready for.. but the days after she passed away and my house was full of people I kept telling people "please don't judge me for not crying, I want to cry but I can't" it's almost been 2 years and I still have a very hard time crying and I'm not sure why. I cry for her don't get me wrong, but for some reason my body is still in "you must be strong mode" I just want to let you know that's it's okay to be like that.. I think it's the mommy in us that is telling us to be strong. I think of you often <3

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  52. Dearest Courtney: It will take time sweet girl, lots and lots of time to feel "normal" again. You are so amazing and so strong, but you are human and you will fall to your knees eventually.
    I know what you mean about doing everything possible to end this horrible disease. So many people have suffered an EB loss and just walk away. I can't do that and I am so glad you can't do that either. Together we will fight this EB and bring EB to its knees.
    Take care and remember we all love you and admire you so much. Give your Mom and Dad my best. Love and Peace Leah and Tabby's nana

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  53. I find inspiration in YOU to be a better mom every day. I am praying for you and that you find what you need to bring you peace. Thank you for sharing Tripp with us and sharing your story. You will probably never know just how important your words are to so many.

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  54. I think that there is no recipe for grief Your way of grieving is the only way.

    You did lose a huge piece of your heart, so finding the next steps will take time. I am praying for your peace.

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  55. Courtney, Thank you so much for checking in and letting us know how you are doing. You are in my prayers every day. Many people are but the important part is that before you and Tripp helped me find my way back to God, I wasn't praying at all. If you can have so much faith through everything that you have been through I know that I too can have faith. Tripp is my hero and you are my inspiration. I hear your concern about not feeling that you are grieving properly but you are. The first stage is denial. That doesn't necessarily mean that you are screaming that it didn't happen but rather that there are so many levels of your consciousness that it has to sink through and every level has built-in pain protectors. You know it's real but some part of you has yet to digest it. You are doing great to just make it through each day. I know you can't help but feel guilty about finding resons to smile but know that smiles are what your little man would want for you above everything except for your faith. I thank you from the bottom of my heart for the amazing gift of faith that you and Tripp gave to me. I can't wait to meet him. I know where I'm going now when this life is over and it's because of you. I will spend the rest of my life working to get there.

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  56. I can't even begin to imagine how you feel right now, Courtney. But thank you for writing and sharing your faith. God has used your writing to change my faith, and I am grateful for you, although I wish it could have happened without everything you have endured. Continuing to pray for peace for you.

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  57. My heart breaks for you every time your links pop up in my news feed. You are such a strong woman and I absolutely admire you for everything. I know you don't want people feeling sorry for you but maybe you should think of it in a different way. It's not pity. So many people feel so strongly about everything you post about and it hurts them too. They hate that someone so good has to go through something so bad. You really can't think of it as a bad thing. People LOVE you. People who don't even know you love you and they love your son and they honestly hurt for you but also for themselves. People have become completely invested in your life through what you post on your blog. I worry about you and I'm sure other people do too.

    No one will ever tell you that you are not allowed to grieve either. The process will take however long you need it to but you need to do it. It's okay to not always have a happy face on. It's okay to cry and to be angry and to be hurt. Things will eventually get easier.

    I think about you all the time, but I've never left a comment or really talked too much about it with friends because I get choked up. The one thing I know is that the best possible thing you could do for yourself and for Tripp is to be the kind of person you always wanted him to grow up to be. Live FOR him. Wake up in the morning and tell yourself, "what can I do today that would make him proud of me? What would put a smile on his face?" You are allowed to hurt, but don't ever let it ruin you. You're WAY too good for that.

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  58. Courtney,
    First off I have to tell you how absolutely in love with Tripp I have become. I have children of my own, and even though I didn't meet him or you, and sadly I found your story when it was time for Tripp to go home to God, he has had such an impact on my life. I think of him and you often. I feel, through your story, his pictures and videos and the sharing of your life that he has become one of my children. I see his pictures and I can't help but smile, feel my heart swell with love for the beautiful little boy he was and still is. My heart breaks for you, I do not know what your going through and I thank God everyday for my blessings especially now, for everything I have. You are such a strong woman and God chose YOU for a reason. You are an amazing, strong, and loving mommy, God knows what he's doing and he could not have picked a better person for the job. What an honor to be blessed with Tripp. I look forward to hearing how you are doing and I love that you still post pictures and videos of your precious little boy, every time I see them I just want to scoop him up, hold him tight, and shower him with love. You have allowed us to share in your life with Tripp and I thank you for bringing him into our lives and allowing us to share with you. I continue to pray for you as I'm sure, as a mom, this is so hard for you. I can't even begin to imagine. Just know we are all still thinking of and praying for you. The pictures you posted made my day. He's beautiful and so are you. I pray that you find peace and comfort. Sending love and prayers your way.

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  59. Courtney...I'm not surprised to read this, or find you're in this place. I had a feeling you'd be struggling with "this" now...why wouldn't you be? The center of your world for those 2 years and 8 months has been displaced now, and the very reason for that fortress of strength you built up, is no longer a necessity. I would think there was something wrong with you if I read that you were picking up the pieces of your life - the "before" one - because that one has probably lost a lot of its value, at least from this new perspective you have now. Getting back to anywhere near "normal" (whatever that new normal will be for you) may take 2 years and 8 months, or ten times that long. Whatever it takes for YOU, you need to be gentle and understanding of yourself. You may not grieve in the way you see as "normal"...you may not cry, or let yourself go like you *think* you should, but you will do what you need to. It will come in its own time, its own way. And none of us will ever forget about you, or stop caring about what you are going through. We (all) love you and are behind you.

    Donna

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  60. our prayers for you never stop; you are so strong and your heart will always grieve. A little part with always be broken, always missing but Tripp loves you MORE than anything and is guiding you. He always has and always will. It will take time but know you have an angel and millions of people praying for you everyday.

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  61. Just take one day at a time and remember to breathe. There is no right or wrong way to grieve; please know that when you, we will be here for you. Not a day passes without you in my thoughts and prayers....although Tripp made me a better person just by seeing his beautiful face, you help me be a better mom each and every day.

    Sending all my love-
    Mary and Baby Jackson

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  62. I think your body is stuck in this survival mode that you had to maintain for so long. Everybody handles grief differently, it just might be taking longer for you to metabolize this. You knew that your days with Sweet Tripp were not going to be as many as you would have wanted, so you stayed strong to make sure that he had proper care, peace and love. You made an effort to make each day special and savored every second for nearly 3 years straight - that's a lot of effort! I can't imagine that you'll do a 180 right away - it'll take some time to process this and for the shock to wear off.
    You may never go into a full-on state of grief - that's okay too. Or it may come and go for weeks or months or years - and that's okay too! Everybody handles loss differently. You're a do-er! It's hard for a do-er to stop do-ing and just let yourself be.
    No matter what, Try to relax (I know WAY easier said than done) and let yourself go. I know you have family, faith, good friends, and many supporters to hold you up right now!

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  63. It seems that your journey with Tripp didn't end last month; it just changed. There's no "right" way to grieve, so I hope you can quickly banish any flashes of guilt. Laughing and smiling have to have a part in this process. I hope you have spaces of loving rage, peace, and healing. And I hope it is some small comfort to know that there are now, literally, thousands of people like me who share your determination to demand treatments and cures for EB.

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  64. Don't be too hard on yourself on how to "should" be. As the poster above said- do what comes naturally and if it's being busy and putting on a happy face for a while longer... do that. The time will come, and God (and Tripp) are helping. Perhaps this feeling is God's "protection" from feeling too much yet. I don't know but he is holding you in his arms just like he is holding Tripp.

    I am still reading and still praying for you. I always will. Your heart will always be missing that piece, even if the sting lessens a bit with time. But you will have that piece back someday when you hold Tripp in heaven again.

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  65. My heart goes out to you. I cannot imagine the pain you're dealing with .... but I'm thankful you know exactly where your sweet lil guy is!
    I met a woman as part of an English asst last year...I might suggest you reach out to her. She's on FB - Dana Graham or For the love of Lauren. she is an inspiring woman, just like you. She is also dealing with the loss of a child.
    God bless you courtney

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  66. We have not forgotten about you, Courtney. We continue to pray for you every day!

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  67. Its so ironic that you wrote these words, because a day or two after Tripp passed, I posted a quote on your facebook page that said "you don't cry because you're weak, you cry because you have been strong for too long". I immediately thought of you and Tripp. Your words today truly touched me as always and I always have you and your sweet boy on my mind.

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  68. I don't know if this can help, I have, since very little, had a special ability which i didn't realise what it was until i was a lot older: People who have passed have come in contact with me, often to reassure their family they are ok and happy.

    I never asked for this, I never used to make money and it took me a while to find acceptance in what was happening to me and most of all realize I was not going mad.

    A few people have found peace through what I told them, and although I am only a channel, I am happy to have helped them.

    Unlike many "medium" would like you to believe we cannot choose to contact the other side or choose who to contact.

    They come freely if it is needed and only if it is really needed.
    Your boy never came to me although I followed your blog but I thought this I am gonna tell you might help. Feel free to keep this only for you if it goes against your beliefs or your feel uncomfortable with my message. It comes from a mom's heart to another, simple as that.
    From my experience with passed souls I gathered that when we pass away we stop any suffering, we are surrounded by love and little ones are taken very good care of. They will look after us and inspire us in many ways but their little soul will remain joyful.
    Occasionally some spirits become earthbound to finish some business, but it hardly happens to little ones.
    Pets often hang around until we pass too, being as faithful to us as they were in life.
    From what i gather from these souls who passed we all have a plan when we come here and it usually involves love and acceptance, making this world we live in better.
    How we achieve that it is often up to our strength as humans. Only the strongest souls make it to earth, and any soul is beautiful and if they fail their mission they will receive support once they pass. For little angels like yours, their mission is often inspiring the people they are loved by.
    In my heart, I wish you to feel their closeness, without a doubt you will see your baby again, but for now, perhaps he still has something for you to do.
    Grieving is a very complex thing, sometimes we go through the whole process fast and for others it takes time. Do it whatever way you feel it will help you.
    You must be a very special soul to have been given such a big job in this life, but any soul needs comforting at times. I hope you will find in yourself a moment to let your grief out and find the peace you seek. But have no doubts, your baby is there with you, still close, still loving you, still feeling your love x

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  69. Courtney, I absolutely love being Catholic. The fact that I heard the same gospel reading as you and thought of baby Tripp is awesome. I prayed especially for you. Both you and Tripp have touched so many lives and I thank you for that.

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  70. My heart breaks for you right now. I can only imagine the pain and the emptiness you are feeling. Just take one day at a time. I think its ok to laugh and cry or both at the same time if need be. And yes! You can cry and laugh at the same time. I know I did plenty after my loss. My sister and I would be crying our hearts out then one of us would say something about our Brother (that had just passed) then we laughed till we would cry again. It's a roller coaster ride that you can never exit. I think you are doing an awesome job. Allow God to shower His mercy and grace upon you. Get mad! He understands, trust me. Feel what you need to feel at that momment Courtney. I'm prying that you will do great things to come in honor of this blessed child. Hugs and prayers, Susie

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  71. You will grieve in your own time in your own way. Although we have never met i am truly inspired by your strength. From the very first time I read your blog I fell in love with Tripp(who wouldn't have). You, Tripp and your family are in my daily thoughts and prayers.

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  72. Sending a big hug and lots of love from Arkansas! I think and pray for you often. Try not to let yourself feel guilty. Tripp IS there with you when you smile or laugh. And that must make him so happy.

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  73. Courtney, your post touched me to my heart when reading it. I understand what you are feeling and can tell you that grieving will come. I lost my daughter after only eight days with us back in September. It is in no comparison to what you have been through but I understand the pain. My grieving comes in waves. And everyone says that I am so strong and that they do not understand how I do it. They say that they would still be a basket case. I sometimes want to lay in bed all day, cry, and stare at my little angels picture. But somehow I get up everyday and make it through the day. Sometimes I feel that I just go with the motions and am not necessarily there but instead imaging what my life would be like with my daughter here. So I can tell you that you are strong because God knew you could handle what he has brought to you. He knew that you would be a wonderful mommy to Tripp and that you would be a strong person no matter what. There is a book that I read, that brought me some type of peace if there is any such thing it is call "Heaven is for Real". I know you know Tripp is up in Heaven but this book will confirm it for you if you haven't read it. I will be praying for you.....and thank you so much for sharing your story.

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  74. Courtney, You have a gift that few people hold. I can't even imagine the pain that you are feeling. I have two boys (a five year old and an 8 month old) and I can't imagine life without them. Your faith is incredible - It will hold you together during this difficult time. As Angelique said - a part of your heart will always remain missing but one day you will be able to hold that sweet little boy again and enjoy squeezing him, playing with him and all the things you were not able to do with him because of this horrible disease. Thanks again for being an inspiration to so many people. God Bless you! Gloria in Alexandria, VA

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  75. What a brave and beautiful little boy! My heart is breaking for you and your family. Your time of grieving will come just at the right time, and I pray that you will feel God's arms around you.
    He will carry you through, He loves you as much as Tripp.
    ((((((((hugs))))))))))

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  76. Courtney,
    I'm glad you will continue to blog. You have a gift for writing and while I've never met you, my heart still hurts for your loss. Of course Tripp is pain free in heaven now-praise God! As always, continued hugs and prayers for you and your family from the mid west...

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  77. Courtney, I cannot even imagine what you're going through right now. I try but as a mum it's hard to think of me without my *3 little pieces of my heart*. don't even have the words to comfort you, nor I intend to do that. Just know that you're not alone, I've never met you or gorgeous little Tripp, but pls know, my heart and prayers are with you and with little baby in Heaven. I'm also grieving Tripp's loss, he gave me more than anybody or I could ever have imagined. Let it flow Courtney, do whatever you feel like doing, shattered to pieces or laughing or dancing or just crying so many tears locked in silence for such a long time. I know Tripp wants you happy again, or at least trying so.
    We all as a family are praying for you, your wonderful family and for little Tripp.
    From Argentina, with much much love.
    Hugs
    Paula

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  78. Courtney I just want to let you know what an inspiration you and Tripp are to me and I'm sure everyone who reads this blog. You have not only made me aware of this awful disease but also have taught me to appreciate the small blessings a lot more. I am a new mom myself, my son is 2 months old and I cannot even begin to imagine how you feel having gone through what you have. I just want to let you know that you and Tripp have made a huge impact on my life and since the day I started reading this blog I have thought of you both daily. God bless you and your family as you struggle to find a new normal and please know you are thought of often by many people. <3

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  79. Courtney: thank you for continuing to post and open your heart to us. I think about you, tripp and your family daily. I pray that you and your family remain close, supportive and trusting, like I know yall will. I hope you know that we are all still thinking about you. I know you will (and have already done) great things for EB. You and Tripp's story reminded many of us of the true spirit of motherhood and also of how to truly follow God in faith. Thank you again for sharing your family with us and for continuing to do so...

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  80. My dear and faithful girl,
    Our Lord has his hand mercifully on your shoulder. He will carry you through the coming YEARS. As a mother with a tiny little rosebud in heaven, you never forget, you always wonder. My saving grace is that there is no more suffering, no more pain, no more saddness. Just pure peace and freedom....THANK YOU LORD JESUS FOR GIVING MY CHILD GRACE..SO THAT HE MAY NO LONGER SUFFER. I praise him for that. You ARE in shock and with time, the numbness will wear off and you will grieve. YOU will cry. Sometimes we are so relieved to see our babies no longer suffering that we feel guilty about not crying, but when you see that pain, that strength, that journey, you cease to be concerned about yourself...draw strength from your faith, your memories and your family and friends....I am in prayer for you...take your time and don't be in a rush for a NEW normal...allow the old Normal to adjust itself...Much Love, Tracey

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  81. Hugs! I know that what I'm about to say doesn't come from a grieving parent perspective so please know I'm not trying to say I understand that. It is unimaginable. God has been working on me in the exact area of steeling myself to pain and being strong for so long. I dealt with the ulcers of Behcets for two years with no relief while dealing with an emotionally abusive marriage, I had no choice but to be strong. To force my thoughts to rise above the pain so I could put one foot in front of the other and get through it. God will open you up with time, when you least expect it. When time and space has strengthened you a bit. Be willing to feel, even the stuff that hurts. When we shut ourselves down to feeling pain we also limit our ability to feeling happiness and joy. God will meet you there like a calming salve and help you through this like he helped you be strong for so long. You are loved with an everlasting love. Hugs mama! You got this, you are strong.

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  82. Courtney, I have been following your blog for a few months now and I have to tell you, I am in awe of you. You did everything in your power to give your beloved son a good life, and you did just that. He felt the unconditional love of his Mother every day of his short, painful life. Maybe God sent him to you to let you see just how STRONG you are!! I am old enough to be your Mother and yet I have learned so much from you. I thank you for that. You have renewed my faith in humankind and in God. I will forever be grateful to you and in total awe of how you coped and handled all the sorrow that was sent your way. I will follow your blog as long as you write it, and know that you and Tripp will be remembered in my prayers forever.

    Sandy Kennedy, Aurora, Colorado

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  83. I can’t imaging what are you going thru, but you know that you did the best you could, you made him happy, you were there for Tripp all these years, the best mommy that you could have been. Don’t beat yourself up for smiling; laughing, think this is the way that he would want to see you. Tripp wouldn’t want to see you crying or sad. He is watching now from heaven, this will pass. You are not forgetting about him, he will always be your baby, that will never change.

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  84. Praying for you, sweet Courtney. The Lord has given you so much strength and He won't leave you now. You grieve as you need to grieve, in whatever form that takes, in whatever time it takes.

    And Tim is right- you are an amazing, inspirational person. I'm glad you're going to keep blogging, too!

    I wish I had better words to offer, but please know that my prayers are with you.

    Love from TX,
    Laura

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  85. YOu WILL wrtie that BOOK you MUST not only for yourself and Tripp to get His message out there to speak for him to continue to speak for him BUT also speak for those can maybe can not for the kiddos and the moms who can not bare to speak at all...God has given you such a fighter like spirirt a warriors spirit and HE gave that to Tripp as well and now speka for Tripp...Courtney you will luagh and sing and play and smile, you must inorder to go on to give hope to others, to honor Tripp as he smiled when others would not have been able too...this is also how you can honor your son is by LIVING...maybe not this moment as this is all sooo fresh and so very sore BUT oneday wehn that smile is on your face do not feel guilt feel joy for Tripp <3

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  86. All of us who read your blog and have been tremendously touched and blessed by Tripp's story will continue to "be there" for you, even if it is through prayer and lifting you up before the throne of grace. I am not the same man I was before I read Tripp's story, and he is inspiring me to become a better person, and to help in the fight against EB. Courtney, know that we are with you in the next part of your life's journey, and you will NEVER be alone.

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  87. Oh, Courtney, my heart continues to break for you. I opened your blog this morning hoping to see a new post. All of us around the world are praying for you and wanting to hear from you. I so wish you could have your Tripp in your arms right now, free of pain. Tripp's perfect love most definitely surrounds you. He is looking down from heaven and is smiling his world famous smile, giving thanks and praise to God for giving him the most wonderful mother on Earth. Tripp loves you so much. And we love you so much and are here to lift you in prayer. This past Saturday, February 4th, my mom and I went to a special showing of the "Being Elmo" documentary. I wore red for Tripp, and we talked about Tripp before and after the film. I cried. I knew that Saturday marked three weeks since Tripp's passing. Oh how my heart is sad for you. Your heart must be so heavy that I don't know how you continue most days. At this time, please don't worry about your journey or how you will manage to be able to "continue." You must let yourself feel what is right and normal to feel after losing your precious and perfect little bubby. And there is no "right" or "normal." No one knows what it feels like to be in your shoes, Courtney. But the Lord knows. Rely on Him on bended knee and in quiet corners. He will add to your strength, as we will do in every corner of the world. Sending you a million hugs from Laguna Beach, CA this morning. Love, Laura Lee McChesney xoxo

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  88. i found myself whistling "elmos world" yesterday. and have NO idea why. thought of sweet boy. and you. think of you all the time. xo.

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  89. You are an amazing women. I know you have no idea how I am, but I think about you & pray for you often. I know through Tripp's story & your strong faith other's are putting their faith in God. I know Tripp is so proud of his mommy. You are amazing. Just wanted to let you know that. & that I'm praying for you. :)

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  90. What a beautiful baby boy you were blessed with, thank you for sharing him with us. YOU are amazing and as you know all to well, everything happens in its own time, including grief. Thinking and praying for you.

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  91. Courtney,
    Everyone grieves differently...at a different pace. You ARE grieving, it's just not the way you expected to grieve. As you said, there is some fear that is keeping you from crying like you want to and from a "new normal". It is okay. You will know when you are ready to let go of that fear and let the tears come. I also think your faith and trust that God is taking care of Tripp is bringing you some peace and acceptance, which is affecting how you are grieving...you have hope instead of complete despair. You will find a new normal...in God's time...when God thinks you are ready. Just take it a day at a time. Sometimes that is all we can do is take life a little bit at a time to make it through. Remember that God and Tripp will be holding you and crying with you when are finally ready to not be so tough.
    I am so glad that you are going to continue to blog and plan on writing a book. I know that I will buy your book the day it hits the shelves! I am one of those people that Tripp (and you) has brought closer to God. I had some sort of wall blocking me from the complete trust in God that I have wanted, and your sweet angel baby helped me break down the wall. I don't really know how to explain it, but I felt God deep in my heart and soul like I have not felt him in years. I cherish every moment with my two sons even more than before, and I have slowed down a bit to enjoy life more. Our children are precious miracles that God trusts us to take care of and mold in His likeness. I am eternally grateful to Tripp and you for helping me see that more clearly and strengthen my faith in God.
    There is a song on Josh Groban's first album that I keep thinking of when I think of you and Tripp. It is called "To Where You Are". Here are the lyrics in case you aren't familiar with the song:

    Who can say for certain.
    Maybe you're still here.
    I feel you all around me
    Your memory, so clear.
    Deep in the stillness
    I can hear you speak.
    You're still an inspiration.
    Can it be
    That you are mine
    Forever love
    & you are watching over me from up above.
    Fly me up to where you are
    Beyond the distant star
    I wish upon tonight
    To see you smile.
    If only for awhile to know you're there.
    A breath away's not far
    To where you are.
    Are you gently sleeping
    Here inside my dream?
    And isn't faith believing
    All power can't be seen?
    As my heart holds you
    Just one beat away
    I cherish all you gave me everyday.
    'Cause you are my
    Forever love
    Watching me from up above.
    And I believe
    That angels breathe
    And that love will live on & never leave.
    Fly me up
    To where you are
    Beyond the distant star
    I wish upon tonight
    To see you smile.
    If only for awhile
    To know you're there.
    A breath away's not far
    To where you are.
    I know you're there
    A breath away's not far
    To where you are.

    I truly believe that Tripp is your forever love, and he is watching over you from up above and taking care of you.
    With love,
    Gina Sommers

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  92. Courtney you are an awesome person!!! I think of Tripp & you every single day. When I look at my little boy I think of how blessed I am and how I don't want to take any day or time I have with him for granted. Tripp taught me how to love with all my heart and you taught me how to be a better mother!! I pray for your peace everynight! I pray for Tripp to look down upon you from heaven and to give you the signs you need to let you know he is at peace. You will grieve in your own way in your own time:)
    Much Love & Faith, Becky, Ryan & Baby Dylan Messina

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  93. What could you Possibly give to God that he doesn't already have? He has no lack. The only thing we can give to God: we can enjoy his blessing- for His sake. Don't feel guilty for fulfilling this fundamental purpose which always underlies the other, fleeting purposes and roles in our lifetime. Let God live through you. Allow yourself to smile. Everyone, including Tripp, can only benefit from your experiencing joy. Much love to you, Courtney. You are an example to me.

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  94. Courtney, I think you continuing to write is going to heal you more than you know. I think you sharing your feelings is such a good thing for you to do right now. I have no idea what it's like to lose a child and I am sure that feeling like your life goes on while his didn't is completely heartbreaking. I am not sure if you've seen the movie Courageous, but I saw it over the weekend and it deals with the loss of a child from a Christian prespective. It actually made me think of you two, even though I don't even really know you. I think you are doing a great job. Keep praying, I know people out there are praying for you too.

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  95. I fully believe that God was right along with you and I am glad that you feel like he never left your side, because I don't think he could have. He loves you and Tripp way too much! He was crying right along with you. Your body will catch up, the tears will come and when they do, let them.

    I understand what you mean though, it's easier to go through something like this when you KNOW that your boy is STILL being taken care of by a perfect God who loves perfectly.

    God sends us challenges and trials to test us, to challenge us to see if we will still call on him in our hour of need. AND you have, EVERY day, because you KNEW you couldn't do it on your own. He is VERY proud of you! He is GRATEFUL that you took such good care of his angel while on earth. Maybe he sent Tripp to you so YOU could learn something about yourself. Maybe about your compassion to others, or you abilities as a mother?

    Every trial we have is not wasted or for no reason. They are for our learning and growth and you have had the ultimate test! AND you passed hon. You endured with a cheery heart and did AMAZING from what it sounds like. Now it's your time to rest...HE will let you rest for a time. You earned it, not that you wanted to, but you did.

    Yes, you say you are strong, BUT that is just what God needs, strong women to move his work forward. Crying and breaking down as you feel you want to, does't make you any less strong. Your strength is solid because God gives it to you. Don't be ashamed of it, you earned it hon.

    I wish you peace for your soul this week and comfort for your heart. Much love you are in our prayers

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  96. It is okay to not put on a happy face all the time. There are going to be times when you want to cry, and be angry and question why Tripp had to go, and that is okay. Never worry about how people will feel about you, you have every right to any emotion that you are feeling right now. You are an amazing person, a huge inspiration, but aside from all that you are a mother who is grieving for her baby, and that is normal. We all know that and will not think anything different of you, ever. No matter if you wrote an angry blog or told everyone to leave you alone for two days so you could be alone to cry, and yell, or do whatever helps you heal. It is also okay to laugh, or smile, and be happy. Don't feel guilty for that. Laughter truly is the best medicine, and I know Tripp loves to hear his Mommy laugh and see her smile. He is with you in everything you do. :)It will take you time to figure out a new routine. Don't rush or force anything, it will all come in due time, and day by day, week by week, things will just start to fall into place. Right now, just do whatever you want and put YOU first. Your family, friends and supporters are always there for you through good times and bad.

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  97. Just wanted to drop by and say "Thanks" for the amazing job you have done taking care of Tripp and touching so many people through your words. You and Tripp certainly have led me closer to God, and closer to my own child in the mean time.

    This may sound silly, but I point all of my nurse coworkers towards your blog when they feel like they can't take care of a particular patient. You are a shining example of what a great, compassionate, and whole-hearted nurse should be! I will only repeat what the last comment said- You ARE pretty inspirational.
    I keep you in my prayers through all of this, although I cannot comprehend your loss.
    <3 Kirby

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  98. I can relate also. After our daughter Brea died suddenly the shock kept me going for a while then it wore off. If not I would have stood in the middle of her viewing and burial or in the middle of the store or wherever I was and scream at how life could go on without her! The new 'normal' without our babies is never right in a sense. But, after 5 years I can say that our marraige and family has become stronger than we ever thought possible! Bless you and yours.

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  99. God has a plan for you too Courtney and I have no doubt you are making both Him and Tripp proud! There is no right or wrong way to grieve, listen to your heart and keep your Faith. YOU are a vessel, not because you chose it, but because God chose you....Thank you for posting those precious pictures of that adorable baby boy. His face will forever be in my heart.
    Kasi Treser

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  100. Courtney, all babies go to heaven. When my baby died I was not a Christian so I asked the pastor about this and he said baby's are free of sin and yes she is heaven. I am now a Christian and I am so glad. When my grandson died at 14 months I knew where he was and I know I will see them both again. Christ will get you through this. You will grieve when the time comes. Tripp touched alot of people and who knows he may of brought some non christians and led them to the Lord. I pray peace over you and your family.
    Wanda

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  101. Courtney,
    I totally agree with Tim and Angelique. Everyone grieves differently. You have been so strong and you have so much Faith I admire you so much. I will continue to read and I will be one of the first to buy that book that I know you will write.
    God Bless you.

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  102. I have never lost a child so I really can't (nor do I WANT to) imagine what you are going through. I have recently lost my husband unexpectedly by the "Widow Maker" heart attach. I, too, "put on a happy face" to my friends and family. Going home after work to an empty house, the reality set in and I mourned more than I would let anyone know. The 2 year anniversary of his death is coming up on March 3rd. I still think of him everyday. Does it get easier? I guess so....I just remember all the happy times. You will cope for the rest of your life...keep praying. It helps!

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  103. courntey
    you are such an amazing women,you were the most amaxing mom to Tripp what a guy!!!! I am in awe of you each and every time I read your blog. YOu have shown me how to be a better parent. Tripp was such an amazing kid so strong. The two of you are in my prayers each and every night.
    Love Janice

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  104. I can't imagine your pain and how you are feeling without your sweet Tripp. As a mom I can only imagine and you don't know that feeling until you become a mom. You and Tripp have done amazing things as a team, and even though he's not here with you on earth, you two are still working together as a team! I know it's him that's giving you the strength, and I hope in the coming months you will find a little bit more with each day. God is deftly real, and the other side is too. My good friend is losing her daughter to cancer, and the experiences she's had of the other side are so neat, and for this reason I know your little Tripp is in good hands. Hang in there sweet girl

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  105. Courtney, thank you for sharing your feelings. I've been wondering how you have been doing. Like the person mentioned above, you are inspiration. I am a better person for reading and getting to know you and Tripp through this blog. You will continue to be in my prayers Courtney. And write that book someday because I will buy one!

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  106. I think of you and Tripp everyday. You are a very strong woman and an inspiration to so many of us. I am so thankful to you for sharing Tripp with us. I love you. Praying for you!

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  107. I am so glad to see you blogging and that you are going to write a book! I cannot WAIT to read it! I did the same when my son was so sick and it was so therapeutic for me. We are still praying for you so hard and at times I imagine Tripp just having the best time in Heaven, drumming to his heart's content. I will never forget your little boy, or you and again, thank you for still sharing with us.

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  108. You are such an amazing person and mommy. I agree with you about know where Tripp is. It gives you peace knowing where your child is and knowing that Jesus is taking care of them. Since I can't take care of my Angel, I am so thankful that the best babysitter ever is. I pray that God continues to give you strength and peace. Lifting up you and your family.

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  109. Courtney,
    Know that the way that you are feeling is normal. Everyone expresses grief in different ways so whatever your emotions are taking you is exactly where you need to be. When I heard the sad news of Tripp's passing. I wept for you and rejoiced for him because I knew he was finally at peace with His King. Maybe you are not hysterical right now because you DO KNOW that he is a million times better where he is. You also had time to prepare yourself for his homecoming. Not saying that makes it any easier what you are going through. Please remember that Tripp would want you to be happy and live your life to the best. I lost my Daddy very suddenly when I was little and I went through the stage of "my Daddy is not here to do it, so I don't want to do it" phase. But I realized as I got older how much he loved and embraced life and he would want me to do the same. With time when you do something or see something that reminds you of Tripp, you will smile and be thankful for the precious memories that will remind of you him. They will be unexpected blessings and reminders that they are okay. I continue to pray for you each day. And know that people are not feeling sorry for you. We are feeling your pain. Tripp touched us all and we want to be here for you and help you in anyway we can. Smile for Tripp because he is smiling down for you!

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  110. Courtney after losing my daughter in 2010 to a dipg brain tumor I remember feeling the same way. I wondered if there was something wrong with me because my heart hurt so bad and I needed to cry, but I just couldn't. Don't worry, you are normal and you will be able to grieve and cry in your own time. For me it was about 2 months after Courtney's (my daughter) death. I think when you have to be strong for so long that it takes a little while to convince yourself that you don't have to be anymore. Everyone is different, but that was my experience and I thought it might help you to know there are others that have felt the same way. I will continue to read your blog. I have you saved in my favorites.

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  111. Hi Courtney. I have been following your story for several months now and am so amazed at your strength. I want to tell you one thing that may help you with the grieving. While I was in college, I had a class on death and dying. That was in 1989 and I have thought back to those lectures many times in my life when dealing with grief. I learned that anytime someone close to you is dealing with a terminal illness that you start to grieve for them as soon as you hear those words. You go through the steps of grief while they are still living. The anger, denial, acceptance, etc. I can't remember all the steps right now. Anyway, when the person dies, many times the family has been through a majority of the grief already. That's why many people who have a spouse who dies from cancer will remarry quicker than someone who lost a spouse to an accident or sudden death. I have dealt with both types of death in my family and found this to be true. I'm telling you this to relieve your mind and heart. You have been grieving for 2 years and 8 months+. Don't beat yourself up over the way you feel now or maybe don't feel. You were the most excellent mother to Tripp. Thank you for sharing his story. I know you are going to great things for EB. Take care.

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  112. I think of you and Tripp so often. So many lives have been touched by knowing you both! I will always read your blog, the emotional rawness of how you write your heart out makes me feel human, makes me feel spiritual. Hang in there, everyone grieves differently. Much love and support from NY...and I cant wait to read your book! Thank you for sharing the most intimate, beautiful, sorrowful and hopeful parts of your life with us!

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  113. Your faith is an inspiration, and it drives me and I'm sure others to aspire to achieve the kind of strength in Christ that you have. Tripp, and with him you, have indeed done the Lords work, and I'm sure you will continue to do so. Thank you for that.

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  114. Courtney--

    I continue to lift you up in prayer!! Thank you, once again, for sharing your life and Tripp's life with us!!! God has used you in so many ways you will never know!!! ((((HUGS))))

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  115. Hi Courtney,
    Everybody grieves in their own way and in their own time. When you are ready, you will grieve. I grieve very differently than most people, I draw into myself and hide there until I am ready to come out. Maybe your grieving is in keeping busy. My mother in law works even harder when she grieves. In time you will work everything out. God will lead you where He wants you to be. He has been preparing you for a job that only you can do. You will know it when you are in it.

    Praying for you Courtney, continue to rest in God's love, He is carrying you.

    Blessings,
    <><

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  116. Thinking of you often and sending much love. I can't wait to run out and buy a Reader's Digest! Thanks for posting more pics of your sweet boy : )
    (((hugs)))

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  117. Thank you for your update on how you are doing..your strength is immeasurable. I am sure you will find your time to cry but don't ever feel guilty for when if comes. Your deep faith brings the smile to you and that is a blessing. I am so amazed at how strong your little guy was..I see the beautiful pictures of him and in all his pain, he still smiles. Sounds like his mommy.

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  118. Oh Courtney, he is just gorgeous! Thanks so much for sharing these precious photos of your little man. Love that smile of his! I'm sorry you are going through such a difficult time, but I know that you will grieve when the time is right for YOU. Until then, just take each day at a time, and allow yourself to feel whatever it is you do. There is no right or wrong way to handle this. You have so many people praying for you, including me. Lots of love and light sent your way.

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  119. You definitely have been an inspiration to me and soooo many! I KNOW Tripp is with God and pray for you not to worry about him so much. You're an AWESOME Mommy. Please be OKAY. You're in my thoughts and prayers.

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  120. Courtney, I love looking at the pictures of Tripp... I can see his little toes wiggling away at your "Tripp's voice"... the sound your little man cherished the most I am sure!! Praying and thinking of you every day~ and knowing that a little angel is watching over us all!

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  121. I look forward to each of your blog posts. I am so glad you plan to keep on blogging and write a book. Through efforts and sacrifices like yours and Tripps, maybe one day no other little baby will have to suffer from EB. Do you plan to start any type of fund or awareness group in Tripp's name? I would like to participate.

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  122. Elaine brings a good point on how you have been grieving already for a couple years now. You had to already kinda accept this would happen like when my grandpa got alzheimers , we saw him go downhill for a couple years. When my first Husband died unexpectedly I was in shock just for 1 day and then i had an anxiety attack the next day and had to get used to the new normal. I can't imagine having to go thru my child passing, i bet that is the worst. You will get to the point where you cry, trust me. I was so strong when i was in my first marriage (it was not a good one) I let a brick wall form all around my heart and when i met my current husband i would not let him in and then one night it just happened and i cried for hours because i let my heart "feel" again and it felt good...i know its different situation but its the same concept.

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  123. I wish we could give you want you want--your beautiful baby in your arms and free of pain. He is so cute. Thank you for posting more photos of him. My little girl is 10 months old and napping in my arms and I just ache for you, I wish you could hold your baby again and love him and smell him and do all the things your heart wants to do. I will continue to follow your story no matter what path it takes and never forget the little angel that you mothered so dearly and lovingly for 2 years and 8 months. Even if you never have more kids, you will never stop being a mommy. You will always be a mommy and you will carry your little man in your heart forever. Hugs!

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  124. Oh how I miss your boy! I continue to pray for you. I'm very glad you will continue to blog, I would miss you if you stopped.

    You are an amazing woman that God knew would be the perfect Mom for a most special little boy. He WILL meet all your needs as His Word promises!

    Praying from Michigan

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  125. Oh Courtney, I have just heard of Heaven's new angel, your sweet boy Tripp. I have been in the hospital so have not been checking my email and I am so sorry that this message of sympathy is so delayed. What a gift you have given all of us who follow your blog - the chance to know sweet Tripp, and perhaps the bravest mother most of us will ever encounter. God gave Tripp to just the right Mommy and Grandmom, and what a doctor he sent you too! I am so sorry for your grief. My heart aches for you and my minor hurts and heartaches just pale in comparison. I have never lost a child, other than through miscarriage, so cannot begin to know the grief you are experiencing, but I hope that the knowledge that Tripp is on Our Lady's arms will bring some comfort. If he cannot be held by you, who better? God bless you and your family, and from the bottom of my heart, I thank you for allowing us to know Tripp and you through your blog pages. What an amazing family. ((( )))

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  126. Thank you for posting this. I can't imagine the pain you are going through right now. I imagine that I would feel the same way if I lost my only daughter. It must be so tough.

    You are in our thoughts and prayers. xoxo

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  127. I am so glad to hear from you again. I think about you and Tripp daily and I hope you will be able to grieve and that your body will let you do so soon. Don't be afraid to smile! That is all Tripp wanted all along, I bet he is looking down on you drumming extra hard just to see his moms pretty smile. Your son was a true blessing and such a sweetheart <3 Many hugs to you, you are one of the strongest women I heard of <3

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  128. Your faith is phenomenal and you have shown me that through faith anything is possible. You are truly an inspirational person along with sweet baby Tripp. I know that Tripp is in heaven right now looking down realizing he truly had one of the best mommy's in the world! I have recently been attending church because this has all made me realize that without God nothing is possible. I look forward to reading your blogs whenever you post something new. My prayers are with you and your family.

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  129. It's hard being a "Poster Parent" for a cause. So many eyes on you. Such big imaginary shoes to fill. You didn't put on an act that was fake. You did what you needed to do to survive for yourself and your son (and a community...).
    If you have not connected with a counselor - do it. Someone trained to help people get through this stuff.
    Just as there were time you went "underground" during Tripp's life, you may need to take a break from all this and drink in some life that isn't tied up with EB or blogging or events or media. Maybe quiet time for you to reconnect with you.
    Namaste.

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  130. Hi Courntey, there are really no grief guidelines to reassure you - everyone is different. No doubt you will or may even have been through some stages already and at the moment it sounds as though you are on the 'numb' stage. Keeping busy may be your protection mechanism. It took me a while to realise that I was grieving for my husband whilst he had a nervous breakdown and cancer. I wondered why I felt so bad when he was still there with me but I missed who he was and what we had together before the illnesses.

    Don't beat yourself up, you're doing well and we are all so grateful that you can share your pain with us. Keep fighting.

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  131. It is amazing to see how many lives you and Tripp have touched! Your story certainly has touched mine. I think of you and Tripp often. It is like I know you, even though we have never met. Your story has made an impact on my own life. You have the most amazing support system anyone could ask for. Your family and their strength will strengthen you. Their shoulders will hold you if you need them. You are in my thoughts and prayers!

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  132. Thank you, Courtney, for writing still. Many blessings to you and all of your family

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  133. Dearest Courtney, you are being lifted up in prayer every day. I cannot imagine the path you are on, but I pray you feel the prayers of everyone all over the world as we lift you up.

    Have you considered grief counseling? It has helped some people I know process their journeys.

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  134. Courtney...take your time. You had an amazing 2 years and 8 months with Tripp and you can't expect things to just instantly change. You devoted 100% of your time to him...you were blessed to have each other and I consider myself so blessed to "know" yall. You are so strong and amazing. Just give it time. You will always have Tripp in your heart...he will always be with you. I prayed for peace for Tripp in his last moments and now I pray for peace and understanding and acceptance for you. Just keep your chin up! We are here for you!

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  135. I just listened to faith hill's there you'll be. It made me think of you. I wish I could say something that would be of some help, or make you laugh, smile, feel a little less lost. I just keep praying for you and Tripp, and hoping times flies between now and when you get to seem him again. I heard our time on earth is like a blink of the eye in comparison to eternity, I hope it will eventually feel like that.

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  136. I wouldn't say people feel sorry for you, as much as we feel pain with you... We've fallen in love with Tripp, and although our loss is not nearly as great as yours, we do feel his absence. (I guess I'm sort of speaking for your blog readers; I hope that is ok. At least, this is how I feel.) Just as we stood behind you as you cared for your son, we stand behind you now, as life goes on. You are right: it will never be the same, but I am so glad you know that Tripp is with Jesus. Yes, he changed lives. Truly. And so have you, dear Courtney. You will continue to, since so much of your life's mission is clear. I, for one, am so thankful to you for sharing your journey. Your broken heart is in my prayers, and I cannot wait to meet your little boy in heaven.

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  137. Thank you for sharing the beautiful pictures of Tripp---what delightful smiles! Your wonderful faith is keeping you going. When you pray as much as I am sure you did, you become very close to God and you know exactly how happy and how pain-free Tripp is now. He is with you all of the time, which is a soothing feeling. You and Tripp have helped me so much in the past few months. I am still praying for all of you, as you are so special to me.

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  138. you are an inspiration to me. I love you and Tripp a whole lot! I'm praying and thinking for you, Courtney.

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  139. I think of you and Tripp every single day. I have never met either of you, but somehow fell like I've known you forever. Please don't feel like people are feeling sorry for you in a bad way. I think that everyone just wishes they could take an ounce of your pain away. I know I would if I could. I think that you are already grieving in your own way. You are still smiling and laughing for Tripp, because he will always be with you. He is one amazing little man. He taught me to love with my whole heart! And you have taught me to be the kind of mommy I want to be. Thank you for that and for sharing your story with all of us. I believe with all my heart that Tripp is drumming his little heart out up there, and all the other Angels are dancing to the beat of his drum. Love and prayers from Chicago.
    Chrissy

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  140. Scott M. Peck wrote something to the effect of how evil/bad things can be explained better than good. Death and decay naturally take place in this world (the result of original sin). He said the question we should be asking is, "why do good things happen?" Good things happen because of the grace of God.

    Tripp is in Heaven, and I think that because of his life that people are seeing your faith in God and are realizing how much they need God's grace in their lives too. God uses strange things to call His people to Him, and we may never fully understand them.

    I like to think of Jesus on the cross dying for our sins. He was someone's son too. . . and not just Mary's, He was the son of God. And God loved Him so much, and He had to watch Him die. . . Even worse, Christ was so covered in our transgressions and sins that He cried out, "my God my God, why have you forsaken me," as God had to look away because He is pure and cannot look at evil. That's truly the only unfair thing that has ever happened, and it brought about the most wonderful good. Because of that you and Tripp and everyone else can accept the grace of God in our lives and truly live with Him one day.

    You are grieving. Don't let Satan tell you that you are not. Don't let him tell you that you are weak when you do break down and cry. Trust God and do not fear. Praying for you!

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  141. Maybe all those prayers for comfort and peace for you are in the works right now. Everyone grieves differently and in time you will move through the stages. Finding a new normal will take time, but right now you need to let those people closest to you take care of you for a little while, you deserve it.

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  142. Courtney, you are an inspiration. Because of you and Tripp, I know about EB. I know that grief takes a little longer than we expect. I imagine that everyone grieves differently. Just hang in there and keep close to God. I am learning that myself to just keep close to God. God loves taking care of His children. I can't thank you enough for your blog.

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  143. Courtney - I don't think I have anything to say that will bring you comfort other than the fact that I pray for you constantly. I actually hadn't read your blog until after your beautiful boy had passed away but you come to my mind so often and I just pray for God to cover you with his presence and help your hurting heart to heal. I will continue to pray for you.

    Psalm 27: 13 "I would have lost heart, unless I had believed that I would see the goodness of the LORD in the land of the living."

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  144. I pray that you're able to find moments of peace on your grief journey, and allow yourself to feel whatever you need to feel as you go. You took such loving care of Tripp during his life on earth, I believe that he can now help care for you spiritually from heaven. My prayers are with you daily!!

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  145. Courtney, I have tried to write you a note many times but just couldn't find the words to say. First off, let me tell you how much I respect and admire you as a mother and a person. I have cried and prayed for you and Tripp more than anyone I know and we are complete strangers. You have brought me closer to God and made me appreciate every single moment of being a mother. Thank you for sharing your beautiful son with the world, we all fell in love with him. I will continue to pray for you and of course for your angel, Tripp.


    The Monarch Butterfly Sesame Street episode is saved on our DVR and my daughter watches it often. She loves when Elmo sings with his butterfly friend. What a beautiful song and a perfect tribute to Tripp. I cry every time that song is on but it is also so joyful because I know your son is flying free.

    Peace be with you, Courtney. You are an amazing woman.

    Hugs,
    Courtney East

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  146. Dear Courtney...Your faith is your strength--as long as you have it, you won't be alone. That you are able to maintain that faith even during the hardest times of life, I believe, is so powerful that when you do decide what you want to do, you will have the ability to make an impact even greater than you already have. Please know that when you cry, so many others cry with you--not from pity, but because your loss is felt by even those who never met Tripp or you. You have shared and spread the light of your love...and it seems contagious. That is so very special. Please find comfort in the fact that you will one day be reunited with that piece of your heart that's missing. Much love to you and to the memory of your sweet Tripp. God's will be done...

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  147. Tripp most definitely brought so much good into this world and I'm so thankful that you have shared him with us. I will pray for you and your journey through grief. Your love for your son and your faith continue to inspire me. Thank you.

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  148. Wow after reading what you wrote I had this sad feeling and after I looked at the pictures of that angelic boy, I could not help but smile! I imagine that without him here to cheer you up, things are tougher than they have ever been. Thanks for sharing..you and your son have changed my life. I KNOW that is part of His plan. If your story has impacted little old me so deeply, I cannot imagine how many others are like me. I will pray for you as often as I hug my babies.

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  149. "These are my footprints,
    so perfect and so small.
    These tiny footprints
    never touched the ground at all.
    Not one tiny footprint,
    for now I have wings.
    These tiny footprints were meant
    for other things.
    You will hear my tiny footprints,
    in the patter of the rain.
    Gentle drops like angel's tears,
    of joy and not from pain.
    You will see my tiny footprints,
    in each butterflies' lazy dance.
    I'll let you know I'm with you,
    if you just give me the chance.
    You will see my tiny footprints,
    in the rustle of the leaves.
    I will whisper names into the wind,
    and call each one that grieves.
    Most of all, these tiny footprints,
    are found on Mommy heart.
    'Cause even though I'm gone now,
    We'll never truly part."
    ~Unknown

    I come across this poem and I found it PERFECT for Tripp, and you :) especially cause of the part with pain and then the butterfly! I have read every blog you posted, I just couldnt stop threw the tears and all. I am a mommy of four and my heart aches that your first and only child had to witness this awful disease "/ you are an inspiration to the world as well as Tripp was thanks for not giving up, we love you and prayers for you daily! xoxo Jamie Henson

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  150. Courtney, he is so beautiful. And if he's so beautiful to us - can you imagine how beautiful he is (with all of the sacrifices he was asked to make in this life, all of the pain he was asked to carry) to Jesus? I say with confidence that Jesus is SO. PROUD. of your little boy.

    And of you, too. (())

    Because of you and Tripp - I know that I can do anything that God asks me to do. Like you, I know and trust and believe that God is with us - and will never, never leave us. Ever.

    As for the grief hitting, I have two things to offer. 1) It is too soon. You are still in the numb phase. Please don't be afraid to go to grief share or to grief counseling. Perhaps your church offers something, even. 2) You may not deal with loss and grief the same as with sudden and unexpected loss. Yes, Tripp's death was sudden, and yes, you smiled and were joyful for him and because of him - but you always carried huge pain in your heart because of his wounds. In many ways, you've already been grappling with loss, grief, and pain for 2.8 years. This is a confusing type of grief, simply because of the almost unfathomable amount of suffering you held in your arms and in your heart every day. I don't think you can expect it to look like anyone else's grief; it will unfold over time. One step at a time, one moment at a time - you will grieve and you will be healed. (But you will never not love or miss or forget Tripp.)

    I know that people say all sorts of things when loss has occurred. We say all kinds of wishful things, and some people say stupid things. (They don't mean to - they just get nervous and don't know how to say it.) But as a Christian I believe it is true....absolutely TRUE....that Tripp really *is* alive at this moment. His body is not here, and that hurts you so much - but he is alive. That's what Jesus' resurrection tells us - we, too, have the promise of life everlasting. It's not somewhere so far away - Heaven intersects earth, God lives with us (thru the Holy Spirit.) Death doesn't win - God, and LIFE win in the end.

    Tripp is as alive as we are, Courtney - so even when you are able to mourn hard, it will not be without hope.

    I am praying for you - and I am here if you ever need someone. Holly - (seekingfaithfulness@hotmail.com)

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    1. Hi Courtney, I think I passed you coming out of the post office today, and just wanted to let you know you and Tripp are in my thoughts daily. My heart hurts for you and I hope you find some sort of peace over the coming weeks and even years. I'm sure Tripp is looking down on you and has become your guardian angel.
      -Amanda

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  151. Oh Courtney,

    This might sound like a selfish thing to say and it's not meant to, but I am so happy to read that you are going to continue to blog. Please don't stop. So often we find ourselves bonded to these families who face such trials. We read the unfoldings of your stories and lessons and you become apart of us and we feel like we become parts of you.

    So often people retreat after the loss of a beloved child and though it's completely understood as to why, it so often also feels as though the story wasn't over, it was finished... the lessons were left incomplete some how? I don't know if that makes any sense... but please stay with us... let us be apart of you in this way.

    You don't have to be strong for us. You can break and watch and feel the comfort of hundreds of lives you've touched, hold you and pick up your pieces. We want to. We've felt so helpless so often and in these quiet moments, in our thoughts to you, we get to tell you of your worth and we get to share with you, that yes, you and your family and your baby and your story, brought us closer to God.

    Funny how a complete stranger can feel like a treasured friend.

    You're not alone Courtney... your blog proves that. :)

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  152. Gosh Courtney! Look at his smile!!!! OMG, just adorable! Gosh, Jesus must have given him the biggest hug in the Universe when they met! Jesus must have just melted when He saw the cutest face smiling at Him!
    My prayers are with you, Courtney. I weep for you- even now, but I know that there will be beauty for ashes. God bless you in all that you do.
    I hope that one day you will be able to travel to our side of the world and all over the world, to share about what God did through your precious little one.
    Hugs, love and prayers to you. Love to your mom too. It must run in the family - such amazing grace and strength. Little Tripp got it from you and your mom.
    Bless you. Take it one day at a time. We are all praying for you.

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  153. Hi Courtney , it is not uncommon for woman who has lost a child to experience post traumatic stress disorder. I don't know a lot about it, or your situation, but it might be worth speaking to a professional about. You are in my prayers.

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  154. I've been checking in on your blog, without commenting, but today I will. I am so sorry that you don't physically have your little one with you anymore. I'm so sorry for the grieving process you have to drag yourself through, however and whatever way that happens. Can I just say that I don't think people are feeling sorry for you in a pity way, I think people are just feeling for you, and therefore you don't need to worry about appearing strong to avoid pity. And I know my words are so much easier said than done, and I know I'm not standing in your shoes, so it's said in a respectful way not in I know what you should do way....

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  155. You are a very strong woman and Mommy. You are grieving, just not the way you thought you would right now. We all grieve in our own ways and it's a long process, a very long process. Tripp fullfilled his purpose here on Earth that our dear Lord needed him to, he brought all of us together, has taught us all a lesson that a lot of us would never have known otherwise. He opened our eyes to a disease that most of us didn't know about, he smiled his beautiful smile despite the pain he had to be feeling, you showed the world what a true mother is like, the unconditional love she has for her child, never giving up, always being there right by your angel's side, protecting him, loving him, you were sent here for a purpose, God blessed you with Tripp because he knew you would be the one mother that would be able to show all us other mothers what love is truly about, what is important and what not to take for granted. Tripp will always be with you, I can't imagine how painful it is to not have him physically next to you but in time you will be with him again and you will see him run, play and hear his sweet laugh and that beautiful smile he always had on his sweet little face. You will be able to hug him tightly like you have never been able to do before. Thank you Courtney for sharing him with us, thank you for continuing your journey in keeping us updated with you blog, we all love you, even if we don't know you or your family, you shared the most precious gift with us all. God Bless you and your family Courtney.

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  156. http://media-cdn.pinterest.com/upload/41658365272743599_m2S65Vld_f.jpg

    One of my favorite sayings and one that I remind myself of often when dealing with my disabled daughter.

    <3 TLC

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  157. This was my daily devotional today and it made me think of you.....Prayers always your way.

    "As I write this, it is less than a month since my mother passed away. I prayed for her healing. Our family prayed. Our friends prayed. People we did not even know—people who live afar in Nigeria—prayed for her healing. Despite all these prayers, Mom died.

    Nevertheless, we are people of faith. We cling to the promise of eternity in heaven with our loving God, an eternity in which Mom's vision is clear, hearing is sharp, and joints are limber. God healed Mom. God also will answer our prayers to heal our painful mourning.

    When faced with illness or injury again, I will call on God's healing power. Prayer to God for healing is sometimes all we can do. Prayer is always the best we can do. Therefore, we will continue to pray without ceasing, "Your will be done on earth as it is in heaven...AMEN!"

    Merciful God, we praise and thank you for your loving, healing power, whether you heal us here on earth or through our resurrection. Guide all caregivers to be instruments of your healing. We pray without ceasing for the health of our families and neighbors throughout the world. Amen!
    Mary Simonson Clark
    Minneapolis Area Synod Malaria Work Coordinator
    Master of Arts/Master of Social Work, 2007

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  158. Aw, that little face. How could anyone not miss it?

    Have you read On Death and Dying by Elisabeth Kubler Ross? I just learned she also wrote a book called On Children and Death. Maybe these might be good books to read?

    I have a feeling you will do something amazing to help others, whether it is people with EB or some other illness. So many people know your story and how intelligent you are that a wonderful opportunity will come your way.

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  159. I have only been following your blog for a short time, but have been following Jonah for over a year. That is how I learned of you, I am so sorry for your loss, but know that Tripp is singing praises to God and watching over you! You are a fabulous mommy. I was wondering, did your husband leave you and Tripp? You never mention him. I think that Tripp was a beautiful baby as is Jonah and all the rest of the EB wee ones. May God give you grace and comfort!

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  160. Hi Courtney- I read your post and immediately thought of this poem that someone shared with me when my son passed away. How you are feeling is totally normal, everyone deals with grief in different ways and at different times. Never does a moment go by that I don't think of my son and how much I miss him. He'll always be a part of me just like Tripp will always be a part of you. You are an amazing mom and and incredibly strong woman. Hang in there, girl.


    "The Cord"

    We are connected,
    My child and I, by
    An invisible cord
    Not seen by the eye.

    It's not like the cord
    That connects us 'til birth
    This cord can't be seen
    By any on Earth.

    This cord does its work
    Right from the start.
    It binds us together
    Attached to my heart.

    I know that it's there
    Though no one can see
    The invisible cord
    From my child to me.

    The strength of this cord
    Is hard to describe.
    It can't be destroyed
    It can't be denied.

    It's stronger than any cord
    Man could create
    It withstands the test
    Can hold any weight.

    And though you are gone,
    Though you're not here with me,
    The cord is still there
    But no one can see.

    It pulls at my heart
    I am bruised...I am sore,
    But this cord is my lifeline
    As never before.

    I am thankful that God
    Connects us this way
    A mother and child
    Death can't take it away!

    Author Unknown

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  161. Courtney ~ you are truly an inspiration! The strength that you have is amazing! Every time I read your blog or watch a video of Tripp, my heart melts. Your words touch so many people; it’s like we all know you. It is an absolute fact that you and Tripp have made an impact on everyone that knows you or has learned of your story. I know it has for me! His memory and the impact he made will live on forever!

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  162. Sweet Mama Courtney...none of us would be "okay" to lose such a precious baby. It's okay to be devastated without him. Time will heal your heart...

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  163. Hopefully this Superchick song brings you a bit of comfort - It's a song that get's me through the times whenever I feel horrible and alone.

    Praying for you
    -Emily

    http://www.youtube.com/watch?v=A6K738ne_7s

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  164. Such sweet photos Courtney. I love the smile...the 3rd one from the top is my fav... he looks so happy :) I know Tripp is smiling down at you. So proud of his Mommy. Sending you prayers for peace and strength.

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  165. I just had to write in and send my love to you. I can't even begin to imagine what you have gone through and what you are feeling now. The loss of a child is unimaginable. I lost my mom and my then future brother in law within 6 months of each other so I do know about grief. I wanted to either remind you or let you know that you have been grieving for Tripp since the moment you were given his diagnosis. It's been a long hard battle where you pretty much always knew the outcome. Don't discount all that grief just because it started while he was alive. Whatever you are feeling right now is what you are supposed to be feeling. Just keep living day by day and you will eventually find where you are supposed to be.

    I'm praying for you and always remember you have the support and love of many people.

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  166. Courtney, your faith and courage continue to be an inspiration to us all.

    The grief, the tears, the 'reality of the situation' will all come with time. But you must never feel guilty for how you're feeling right now.

    In one of your previous posts, you say that though you had 'prepared' yourself, you never really imagined that this would ever happen. You have to appreciate, then, that you are probably in shock. You have faced something that nobody should ever have to face but you will endure. God never burdens us with more than we can endure.

    The photographs and videos that you so kindly post of Tripp show, so clearly, what a glowing, beautiful little soul he is. There's no reason why you can't still talk to him in your "Tripp voice"...he will still chuckle.

    Tripp IS a part of God's plan for bringing us closer to Him; of that I have no doubt either - in fact, I'm proof of it. But I also think that Tripp's mission was to stop EB being the 'worst disease you've NEVER heard of', and that's a mission that's now been passed to you.

    The thoughts, love, and prayers of my family and I are with you. You're never alone.

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  167. My Dear,
    You said you hate you hate to think that people feel sorry for you. Not to worry because I am not one of those people. I am very sorry for your loss but not for you. You are without a doubt one of the most loving, caring, articulate, insightful people I have encounter in a long life. Your words have made me cry (many times) but also given me hope, faith, and strength. You touch people in a very positive and deep way. Now look for the opportunities in what is becoming your "new normal". You have too many gifts to share with too many people and it would be such a waste not to embrace this. Tripp will always be a part of you. You will always be his mother and yes, you will always miss him. But your life will go on and the many wonderful things you bring to other people, even strangers, will continue as well. With your great insight and perception discover, understand and love yourself, not as a mother or a wife, but as the magnificent woman that you are. Grieve, cry, throw things, maybe even cuss a little for a week or a month. Whatever it takes. Then saddle up Missy. There is so much the world is waiting on for you to bring forth. And then smile every single day, not because you don't have Tripp but because you had him for 2 years and 8 months. More important because he had you for 2 years and 8 months and not a single person would have been as good and loving mother as you were. So many of us are in your corner and will be rooting and praying for you, sweet child.

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  168. I think those are some of sweetest photos of Tripp I have seen, especially the one where he is simply beaming.
    As you say, the grief will come, perhaps God (and Tripp) is protecting you from all of this happening to you at once? I don't really know what to say. Other posters seem to be able offer many more words of comfort, but I am always thinking of you and Tripp. I can't imagine how painful this is, I wish with all my heart that Tripp was still with you. Please be gentle with yourself. xxxxx

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  169. Hi Courtney, this is my first time commenting on your blog. I found your blog through my sisters pinterest sight a couple of weeks ago. I instantly fell in love with Tripp and your devotion to making his life comfortable. You are an inspiration to me. Every mother should be required to read your blog. I have taken so much away from your story that I can't even begin to tell you how much I appreciate how you opened up your heart and life to the world. Please keep your head up and know that Tripp has changed the world. He was an angel sent to earth to make a difference in your life and the lives of people everywhere. With your help his story has been told. Thanks you so much for sharing your life!!!-Rachel

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  170. Courtney, I think that sometimes we hold on to the hurt because it feels comfortable. The grief will come, and when it does, let yourself feel it. Let it flow over you and carry you in it's waves. The tears will come and you'll feel like thsy will never stop. They will. And, with the tears come healing. I don't thing the pain ever leaves, but it does kind of turn into memories that you will have forever.
    love and prayere,
    Carla Spradlin
    Taylors, SC

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  171. You are one strong Mamma. I look up to you so much!

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  172. Courtney, I just saw Elmo and the butterfly song on Sesame Street today. I of course thought of precious Tripp and I always will. Just wanted to let you know. I believe in signs and I have never seen this on Sesame until today. Maybe Tripp is saying hello! Thoughts and prayers are with you!

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  173. I understand your loss so much. My baby girl Anaya recently passed away. She was 26 months old and struggled with a brain disease her whole life. It has been almost 3 months since she flew to Heaven and I still feel like I am in a dream. I keep myself in "GO" mode so that I don't fall into despair. I now work for an online fundraising company called FundRazr and I am the "community manager". I spend my days helping people raise money for their sick little ones. It is very rewarding.
    I also educate people and advocate for children with Leukodsytrophy. Just last week I went to Italy to help a family whose child has the same disease that Anaya died from. It really dawned on me that Anaya was the biggest influence of my WHOLE life. She was my teacher and she taught me so much! I am determined to share what she taught me with the world, and to honor her life with my love and energy.
    I know that you learned SO much from Tripp. You are forever changed because he existed. You are stronger, more compassionate, more focused, more aware, more grateful - then ever before.

    Hold tight to the lessons that he taught you - and allow yourself to feel pride in yourself. You did a great job! And so did Tripp.

    Love,
    Camara
    www.camaraloves.blogspot.com
    www.facebook.com/camaraloves
    www.healinganaya.com

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  174. Courtney, thank you for sharing updates on how you are doing. I have read every entry of your blog and will continue to follow as long as you write. I think of you daily. Yesterday, I was riding in my car listening to K- LOVE radio station and I heard "Homesick" by Mercy Me. My thoughts immediately drifted to you and Tripp. If you haven't heard that song I hope you give it a listen. Your have been so strong for so long. It is ok to be sad, angry, or an other range of emotions that you feel. Never feel guilty for any of the emotions that you feel. It is part of the healing process. This journey of healing is different for each individual. Know that you are not alone on this path, I will continue to pray for you. You are such an inspiration to me. <3, LeAnn Turner

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  175. I am so incredibly sorry for your loss. While a completely different situation, I thought you might be interested in this blog. http://www.sullivanwims.blogspot.com/
    If you go back to the Sullivans blog on the right side, Brady also talks about how his late wife was a part of God's plan...your comments just also touched me and reminded me of the Sullivan's blog...your faith is truly amazing.

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  176. You inspire me to believe that God always has a plan for us and that He is with us. If someone can go through what you and Tripp have and can be so strong in your faith, then I must continue to have faith also. Thank you for sharing Tripp's story and your always positive attitude.

    I can tell how happy Tripp was and how well you cared for him. His smile is so beautiful! Makes me smile seeing his sweet face.

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  177. Courtney,

    I spent a couple hours in front of the Blessed Sacrament this evening. I prayed a Rosary and read from an encyclical by Pope Pius XIII. I requested your son's intercession and the intercession of all the angels and saints in heaven for this world we live in.

    In the Catholic Church there are three states in life: married, single and religious. All three lead to God and to holiness, although the religious state, with its vows of poverty, chastity and obedience, normally tends toward greater holiness. I say normally because most of us have not loved as perfectly as you loved your son.

    You need to discern which state of life God is calling you to; if you haven't already decided. I think you would make a great sister.

    You're in my prayers and I am so grateful to request Tripp's intercession; even though I still get tears in my eyes when I do.

    Benjamin

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  178. Dear Courtney,
    I related so much to your feelings… you have been so strong and engaged for Tripp and your family every single minute of every single day for 2 years and 8 months and now you do not know how to function differently… functioning differently would also mean to recognize that the reality is different and this is unbearable. I look at the beautiful Tripp's pictures you have posted and I feel a stone in my throat, I long to have had the opportunity to meet him and you and to have followed his further developments, I would kiss those beautiful happy cheeks, so I can only try to come close to imagine how you might feel..
    Grieving is a very complex process and it makes you feel like on a roller coaster … give yourself time to live the different feelings related to it, live hour by hour and do not expect any "codified" reaction from your side.
    Personally I experienced it very differently with the loss of my daughter and that of my father and I can give you my experiences just to show you how different it can be.
    Unfortunately I will send this in two posts because otherwise my PC gets blocked.
    A big hug

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  179. Dear Courtney,
    With my daughter it was and still is very different, especially because while we know that our parents in principle will die before us (even if we do not want to think about it), it is so unnatural to even think that your child will embrace God before yourself. Your child is part of you and you really feel that when they go in Heaven a part of your heart goes with them. I lost Angelica in advanced pregnancy, but the grieving started the moment the doctor announced us in a very insensitive manner that she had been infected with toxoplasmosis and that this had eaten most of her brain (only a small areola was left) and internal organs, so she would either die in utero or short after birth (but with a lot of sufferance). Alternatively we could terminate the pregnancy. I have never felt such a stabbing pain in my whole life. I could barely breath. For weeks I was in shock, I would feel her move gently and yet I knew she would not live for long and I just wanted to lie in darkness and cry, but I had to be strong because I had to take careof my son (who was 5 at the time) and I wanted to be close to my husband who was suffering as well. Inside I just felt so devastated and angry. I could not stand anybody. I felt so lonely, like if everybody's life was moving on completely indifferent to my sick baby and her existence. One day I started to leak water and few days afterwards she was stillborn. We managed to baptise her before she stopped breathing. Giving birth and be surrounded by silence was awful. She was wrapped in a tiny little dress that I had managed to sew and embroider, along with a wool cover. We held her with us for few hours, but then had to say goodbye to her… Immediately after that I started to feel completely numb and indifferent to the whole world. It was like seeing somebody else's life from an external angle. I wanted to cry, but I could not shed a tear. I was doing everything like in slow motion. One day, I was so absent-minded that I nearly stepped over a girl with my car. She got scared, but nothing happened. This day marked the start of a new phase. It was like on a roller coaster, I would feel despaired for the loss of Angelica, guilty as I wondered if I could have done something to protect her, miserable for not having had the opportunity to have memories of her alive and growing up. Few weeks afterwards we found out I was pregnant again and that created a lot of new emotions: anxiety, fear, happiness for the new baby and yet a sense of guilt immediately afterwards, like if having a new baby meant I was forgetting Angelica. For a long time I could not stand to hear anybody laugh around me and I would feel guilty myself if I would laugh or smile. I felt like this would mean betraying her and showing her that my life could just well go on without her. Three years and a half have passed since then and I have had two more children now. There are days when I miss her so much it hurts and there is definitely a part of my heart which is gone with her. I will never be the same as I used to be before her. I always have the picture of her footprints with me and cherish what the priest told me, that this is the tangible sign of her walking on Hearth.

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  180. Dear Courtney,
    As mentioned in my previous post,over time God has helped me and has slowly transformed my pain. As you said I also felt his presence through good and bad times in my life. Now I manage to speak about Angelica without immediately feeling a sense of despair and an unbearable void (even if there are such days), but rather with a sense of warmth and gratitude for the months she has been with me, for the heritage she left us and I feel her warm presence of a Guardian Angel. She's constantly giving me signs of this, which are difficult to explain. Tripp will give you signs too. And I learned not to feel guilty if I smile. It took time. But now I dedicate every smile to her. I would have liked to be a happy and loving mother for her and I think that she likes to see me cheerful and able to enjoy the many beautiful things God created and gave us. Moreover I do it also for my other children as I would like to give them a happy and loving environment too. We visit her together at the cemetery; we pray and talk about her and by doing this I also feel she's still there, but in a different form.
    Do not feel guilty when you smile, even if it will take time. Do it TO Tripp. He's looking at you and loves to see his Mummy's beautiful smile. The fantastic environment you created for him for two years and eight months was done through you love, care, devotion and also through your beautiful smile. When I smile I often think whether she would have smiled as well at the same thing and that also makes me feel close to her.
    Thank you for continuing to blog, for writing the book and for continuing the fight against EB. You will do it, just give yourself time. Tripp and God will look at you and guide you along these roads. We are also here to help in any manner you might find suitable.
    Thank you once more for sharing your heart and Tripp with us. Those pictures are so beautiful.. I particularly love the last one, outside. He really looks like a Saint, he is.
    A big hug, Talia

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  181. Courtney,

    You don't know me but I have followed your blog and story for a long time. This morning on Elmo they played the butterfly song and I thought of Tripp. So many things happen in my day and I often find myself thinking of him and you. He has changed my life forever and there will always be a place in my heart for him. He is such a hero to so many people. Thank you sooo much for sharing your little angel with us.

    You and your family will continue to be in my prayers.

    ~Sheila

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  182. Dear Courtney,

    I only read your blog for the first time the week before Tripp passed. As the mother of a healthy 8 month old I can't even begin to imagine what you must be going thru.

    But I wanted to let you know that each night as I pray over my son, I also pray for you and your family, that God will surround you with those who love you and will lift you up. That he will draw you close to Him as your grieve and help to heal the pain in your heart, even though it will never be fully whole again. Tripp will be remembered, even by those who didn't know him.

    Sincerely,
    Christiana

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  183. I just happened across your blog today and couldn't resist leaving you a message. You have found your way into my prayers. I can't imagine your pain.

    Your little man looks so happy in the photos! In your heart, know that you gave him happiness while you could and now God has him in a painless world.

    Please accept this cyber-hug and know that you are in (from the comments that I see) a lot of people's prayers to pull you through your sorrow.

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  184. I just read through many of your posts (found your blog via pinterest). I am so sorry about the pain you are going through right now. I have 2 sons, ages 2 and 3 and I can't even imagine how you are feeling, or how difficult it must have been to watch your baby struggle. You are an AMAZING mom. I admire your strength, courage, perseverance, faith, and unmeasurable love for your beautiful son. I laughed and cried at the kiss video. Oh, my goodness, he's sooo sweet! Thank you for sharing your perfect son with the world and helping to remind me of what's important. Much love and prayers your way.
    Love,
    Kali

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  185. "People cry, not because they're weak. Its because they've been STRONG for too long."

    Thinking and praying for you everyday.

    firefly_adt@msn.com

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  186. Your story is so beautiful. It is sad, but not nearly as sad as it could be because it is so full of love. I can't help but feel a mother's love for tripp just by reading it. I'm so sorry he passed, but please know you gave him the most wonderful life possible. He was so lucky to have you. Best wishes.

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  187. Courtney, I just found your blog through Pinterest, and have spent the last couple hours reading your posts. What an inspiration both you and your Tripp are. I can't imagine the pain you are feeling now, but I truly believe Tripp is watching down on you and will always be there for you. I am so sorry for your loss, but God has gained a beautiful angel. What a little sweetheart.
    I will keep you and your family in my thoughts,
    Hugs,
    Kim

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  188. Oh Courtney I'm so glad you're continuing to let us know how you're doing. Be gentle with yourself...you've spent the past 2 1/2 years in such tight focus and strong determination for yourself and your precious son - your heart and mind are just adjusting to your new "normal".

    You don't have to cry for us to know how you miss him.

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  189. I just stumbled across your blog and just wanted to let you know that I am thinking of you and praying for you and your family. I am sure there is nothing anyone can say right now to ease your pain but just know that everyone reading your story admires your strength and have been forever touched by Tripp.

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  190. i just happened by your blog via pinterest of all places...was not planning on becoming a sobbing mess 5 minutes ago! you are so inspiring. you son is so beautiful. just thinking of tripp in heaven with Jesus and with a perfect body without pain or suffering makes me have the shivers. God is so good. the way you have handled this gift in your life is such a witness to Gods love. i can't even imagine what it would feel like to lose one of my children, but i know that God does not leave us and He is always there to carry us when we feel we can't take another breath. i will pray for peace and healing for you and your family. what a joy to know that one day you will be with your baby again in heaven :)

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  191. I read your story, looked at your pictures and saw your videos.....I was so touched. Tripp looked like an absolutely amazing little boy. I especially liked the video of him playing the drums! You have an amazing story and an awesome testimony. You are a great mom and I know that God is going to use you in amazing ways as He already has used Tripp to touch people's hearts and lives. God bless!

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  192. Courtney, I stumbled upon your blog this evening and my heart has been completely captured by the incredible story of you and your brave and beautiful son. I am so deeply sorry for your loss and I do believe that countless lives have been and will be touched by the testimony of your love and your son's bravery. Know that you are in my prayers though we might be strangers, I will keep this story with me always. Blessings and peace to you from a fellow sister in Christ,

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  193. You are such a strong woman. I admire your strength. I started following you the day after Tripp passed away. I think of you and Tripp each day since then. You will just run though my mind and I wonder how you are holding up. Stay strong. Tripp was so perfect. A perfect little boy. Take care of yourself.

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  194. I read your story, looked at your pictures and saw your videos.....I was so touched. Tripp looked like an absolutely amazing little boy. I especially liked the video of him playing the drums! You have an amazing story and an awesome testimony. You are a great mom and I know that God is going to use you in amazing ways as He already has used Tripp to touch people's hearts and lives. God bless!

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