Thursday, October 31, 2013

Another holiday comes and goes...

I woke up this morning with such a heavy heart. 
I open Facebook (like a dummy) and see all the pictures of kids in their Halloween costumes. 
 Halloween at school, field trips to the pumpkin patches, dressing up for Trick-or-Treat.  
It's a very rare occasion for me to cry.  I think my heart is a little cold and hardened.
But this morning (well most of the day) was that rare occasion.  

I didn't get dressed today.  I didn't brush my hair. 
 I didn't put makeup on.  
I woke up, sat at my desk and started looking through old pictures and videos...  And I swear the weight of a ton of bricks felt like it was sitting on my chest.  
It was hard to breathe.  It was hard to catch my breath between the wails and the sobbing.  
How in the world has it almost been 2 whole years since I've been without my baby?  
And how in the heck am I still alive?  

I realize now why I avoid doing what I did today.  
Why I try to avoid talking about it, or looking at pictures and videos.  
Because it hurts like hell.
  It's like sitting down to slit my wrist.
Not my idea of fun. 
But today, I just needed it.  I needed the reminder of what my days, hours and minutes used to consist of.  I needed to hear the sound of that little drumstick banging on his drum.  I needed to see that sweet smile. I needed the reminder that I was a good mom.  That I tried as hard as I could.  Because, honestly, sometimes I feel like a flat out failure.  I watch his videos and look at his pictures and think about how much pain he was in.  How he was ever able to muster up a smile is beyond me.  

Y'all, those videos were his happy moments.  The moments where he felt good enough to play or to smile.  And in the end, they were the moments when he had enough pain medicine in him to be able to sit up and function.  He was so strong.  So brave.  I tried to record all that I could because I knew one day, even the 40,000+ pictures (literally) that I had, weren't going to be enough. 
 And they aren't.  
But beyond the videos and pictures was real life pain.  I say "real life," but it was still nothing like I've  ever witnessed before.   Something unexplainable.  Unimaginable. 
I can honestly say that that for the 2 years and 8 months that Tripp was alive, I was living in a super-human body that was held together by the grace of God.  
Looking back on these videos and pictures now, I just can't comprehend how I didn't just sit and cry and cry and cry.  I know that I did what I had to do for my baby.  I had blinders on and I was focused on one thing and one thing only... the health, happiness and comfort of my baby boy.  

But now... as I look back on pictures and videos, I swear I feel like you might as well take a butcher knife to my heart and twist it a few hundred times.  How could one child live through so much pain? And how did I witness it knowing I couldn't stop it?  
How are there precious children and adults still living right now through this type of pain?  For years? With no relief? It makes me SO sad. 

The other day I was sitting, thinking about these same things... the pain that Tripp suffered through and the pain that other children and adults with EB suffer through.  And I thought of something (I wish I could say God spoke to me, but I've been begging Him to do that for years and I've never heard anything... maybe He speaks to me in ways I don't realize.) ... but anyway, I thought, "You know, I'm so sad about the pain that Tripp suffered and the cross that he had to bear, along with the one I'm bearing as well... but Jesus went through this same pain (was it worse, equal, less?  I don't know) but He was beaten, cruely tortured and nailed to the cross?  But do I get sad about that?  Do I cry about that?  If I love Jesus as much as I love Tripp, shouldn't it make me sad that He suffered like He did?  All because He wanted us to be able to spend eternity with Him?
Is that how much we are supposed to love Jesus?  Is that why He keeps telling us He wants a personal relationship with us?  So that we can love Him like we love our own kids?  Or the unimaginable... even MORE than our own kids??  I think so.  
It was a pretty cool epiphany moment. 

Ok, sorry, sermon over.  I'm all over the place.  Back to what I was talking about... 
I've tried to tell myself for over 4 years now, that God has control over Tripp's pain.  That God had to have been taking some of the pain away from him.  Faith is hard.  That is a hard thing to believe.  It's like you believe it because you absolutely HAVE to believe it to survive.  Because what if God didn't? What if Tripp felt every little bo-bo?  Every blister that felt like a 3rd degree burn?  Every bath when water hit his sores, and he screamed and screamed uncontrollably... who was helping him out with his pain then?  The thought of how much pain he was in has haunted me for these past 2 years.  And only for the past 2 years, because I'll say it again... when he was alive- I was in survival mode.  Doing what I absolutely had to do to get through each minute with a smile on my face.  For him. 

I have no clue what I'm trying to say, really.  
I'm just trying to let out my sadness and my pain.  
In some kind of way.  By being real... and honest. 

I spent all day yesterday with my mom cleaning out my storage unit and going through the rest of Tripp's things.  Deciding what to keep and what not to keep.  
It was heart-wrenching.  Completely just wrong.  And sad. 
Needless to say, there wasn't much that we could part with.  Unless he just absolutely never played with it, or wore it, or touched it. 
 How does one part with the most precious memories they have... really, the only things this mommy has left?  

I would give up my life this very second if I could be doing this again. 

I was the happiest I'd ever been.  
Despite the pain of watching my child suffer.  
Despite the compete and utter exhaustion from literally no sleep. 
Despite the mental torture of not being able to help my own child. 
Tripp made me the happiest girl in the world.  
I lived for him.  Literally every move I made was for him.  
I put 110% into it... and I guess that's why I feel like I'm grieving 110%. 
It's hard.  It sucks.  There's no way to describe this feeling.

certainly would not say that I don't have anything left to live for... because that is very untrue.  I have THE most amazing man in my life... who was, is and will be by my side through the good and the bad (and the really really bad).  Stephen has saved my life.  Given me reasons to smile and to love again.  He has taken care of me better than I ever thought possible.  He has picked my up from my lowest place and taught me how to trust in love again.  I'm very, very grateful for him. 
He's a man who shares my faith, shares in my pain, shares in my happiness, loves me for me... and also puts me in my place when it's needed.  He was made perfectly for me. 
And I of course have my incredible family and friends who put up with my good days, my emotional days and my terrible-I-don't-want-to-be-around-anyone days.  They love me unconditionally.  I have my sweet momma who was by my side every minute of this journey, who hurts on her own AND when I hurt.  But I was surely born into my family for a reason.  There's just no way that anyone could survive without the support that I've been given. 

But... I AM saying, that my life will never, ever be the same.
I know my fellow mommies who have lost their precious babies can relate-  
I will never have that "same" happiness again.  Yes, I will have happiness again... I have happiness and I will be given more happiness.  But not happiness like that.  Not the pure bliss I had for 2 years and 8 months.  Nothing will be able to replace that. 
My heart is aching and broken.  It may heal in places over time,  but it will never be whole again... 
until I'm reunited with my baby.  
What a glorious day that will be.  



  1. I can feel a teeny, tiny, hint of your pain when reading this. I am so sorry.

  2. Your words never cease to inspire and amaze me while simultaneously breaking my heart. I only wish there was something I could say to ease just a fraction of your pain. I am honored to read this blog and to have followed you and your beautiful boy's story for so long.Sending many hugs.

  3. Praying for you tonight, Courtney. May God grant you a peace and comfort that only He can grant.

  4. Thank you for sharing your heart and faith. I pray God continues to give you strength and peace.

  5. I am so sorry for your loss, and hope that you know how much you inspire those of us who read your blog. We can see how special Tripp must have been to inspire such love and devotion from you, and hope that you soon find peace and comfort.

  6. I had the pleasure of meeting you, your mom and Tripp at the Doctors office in 2010. When I talked to Tripp he kept smiling and smiling. My heart was broken when you told me about him. I was so amazed at your courage and your mom's courage. You looked so young. Your mom looked so young. She looked like she could be his mom instead of his grandmother. I knew God was holding you in his loving arms to give you strength and courage to endure. You gave me a card with his website He was a beautiful child and I loved watching his videos. I loved his LSU video. It was just unbelievable how he played his xylophone. He's not hurting anymore. Thank you for being such a good mom. You are in in my prayers that God will give you peace and happiness.

  7. There is never a day that I do not think of Tripp. The both of you have touched so deeply. I have no doubt that Tripp watches over you daily and is so proud of you as his mother! You are an amazing lady and he was given to you for a reason. God bless you.

  8. You are so strong and you have a very warm and good heart<3.I feel your pain everytime when I am reading your writings.Luckily God has been with you and you can rely on him.Memories of your lovely little man are something that never go away.I hope all best to you.You are amazing and it is nice that you share your story with all of us.<3

  9. I am so sorry for the pain you feel. I cannot even begin to imagine what you go through every day. I will never forget Tripp, he helped me realize a lot of things and I am forever changed because of him. The only thing I can say is, at least he is no longer in excruciating pain. I know that does nothing for your broken heart though :( Tripp was a precious and special child, and he has a precious and special mama. hugs.....

  10. God was with you every second of every day while you took care of Tripp. He still is...speaking to you and carrying you when you are at your worst. Your epiphany was God talking to you. And God sent Stephen to be with you and love you no matter what.
    When I feel like I can't take anymore I read a Post-it on my computer. It says: "God is here always to hold, love, and protect me." Tell yourself that when you feel such despair. Give Him your pain. He lessened Tripp's pain, and He can lessen yours, too. You just have to give it to Him and keep trusting Him to take care of you.
    I think of you everyday and my boys and I STILL pray for you every night. You are an exceptional woman with a beautiful soul. Keep the faith.
    Love always,

  11. Just know that people you don't even know are still praying for you... that you will be held in the hollow of His hands.

  12. I hope putting your pain out there for us to share with you will help ease it a little for you. My heart is still broken for you. I think of Tripp all the time, especially when I look at my boys. Your boy taught me to appreciate every minute with mine.

  13. I'm always praying for you and your sweet boy Tripp. He was and is so lucky to have you as his mama. God chose you for a reason.

  14. Love and hugs as always- praying for you.

  15. Oh Courtney, I hope you can feel the love we are sending in our comments. I wish I could send a hug. God matched Tripp up with the perfect Mommy. I have never lost a child after birth so I do not know what you are feeling, not really. My ex has turned my adult kids against me and I never hear from them, which hurts but cannot be compared to your loss, not at all. You are always in my prayers, and the prayers of those with whom I have shared your story, and Tripp's. I hope that by expressing your pain to those of us who care, you may feel some comfort and know that we are sending love the only way we can, through the written word. May God bless you and hold you ever in his hands, and may you someday have peace and comfort and easing of your profound loss. He was your sunshine and your world feels dark without him - that I can understand. Much love and a big hug

  16. Hi Courtney,

    I have been reading your blog for a few years now and am so inspired by you. I especially relate to this post, this idea of relating our human suffering to Jesus' suffering and death for all of us. I am mom to a 5-year-old son with a terminal condition called Spinal Muscular Atrophy and was recently asked to speak to youth at our church. I wanted to share my talk with you: because I love what Pope John Paul II wrote about suffering and I included a snippet of it in my talk. What you've suffered through, no parent should have to endure. But for me, while my son is still living, it brings me comfort knowing that this suffering her on Earth is only temporary and that we can truly offer it to Christ who can heal our hearts and bring us comfort and peace in those times we most need it. Blessings and love to you as you grieve your beautiful boy.

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  18. nobody will ever replace anyone, but as the seasons come and go, more and more people will fill up your heart with pleasant emotions that will slowly heal the major pain you feel.... true, the longing for Tripp will always be there.... but you might find yourself more at peace as time goes by and as God works his miracle in your life once again .... :) ... don't stop sharing your feelings with us... we love to hear about them... and love to know about you and how things are going ...


  19. Oh Courtney, we love you so much. I wish I could ease the burden of your grief just a little. I know I can't, so just know we are thinking of you and loving you always, and are grateful to have you in our lives.

  20. I am so sorry Courtney. Today I renewed my DEBRA donation that comes out of my check. I'm not saying this to pat myself on the back but I want you to know that Tripp AND you made a difference in a lot of lives including my own. I heard about EB from your heartfelt blog and it touched me in a way I can't explain. Keeping you in my prayers!

  21. God is caring for Tripp, just as he is caring for you. Hold tight to His grace, His love, and His words. They will sustain you now as they did when Tripp was here with you. You are loved and prayed for by so many people. Thank you for sharing your heart.

  22. I have to start by saying I'm so happy you're back. I know I speak for a lot of people when I say that you were missed!

    Before reading your blog, I would never imagine I could love someone I've never even met. But I honestly love Tripp. He is the most beautiful little guy I've ever seen with a beautiful personality to match. I definitely learned a lot about life from that little guy... and I didn't even "know" him.

    I can't begin to imagine the pain you've endured -- through his pain and now learning to go on with your life without him here. You did a phenomenal job as his mommy - he was a very lucky little boy. And you were lucky too - not everyone gets to be mommy to an angel. <3 Sending lots of love and constant prayers for your healing and peace.

  23. I came across your blog right before your sweet little Tripp passed away. My heart broke for you then & still breaks for you now :( I think about you & check in on your blog from time to time wondering how you are doing. Your faith & way with words always inspires me (a fellow Catholic girl :) I really believe your epiphany was God talking straight to you....when I read that it reminded me of something my 5 year old recently said to me when I asked him how he knew something. He said " God told me" Then he said..."Ya you know sometimes when thoughts come into your head it's really God talking to you." It kind of blew me away...but is so true. I wish that any one of us could take away your pain...but know that we will keep praying for you & I for one still love to read what you write! God Bless you :)

  24. Courtney, I have no words of consolation. I can't imagine your pain. I can't imagine the pain that Tripp went through. It's so very sad.

    I remember when you first posted that video of Tripp and the maraca, dancing around, trying to make you laugh. I remember laughing and crying at the same time thinking of this little angel and the simple and universal tendency for kids to want to make their mommies laugh.

    you are an excellent mother. world class. You inspire me to be a better mother.

  25. I honestly believe that God does speak to you in ways you may not understand or realize. I am 37 and have been working on figuring out how he talks to me. For me, when I feel complete peace after I hear something, I KNOW this is my Heavenly Father talking to me. It could be so different for you. It took me 36 years to figure that out.

    You are an amazing woman who God called to have a child who has changed the world. What a blessing that God blessed you with your little man.

  26. Wow God DOES speak to you.

    You are drenched in the prayers of so many as you walk this journey. Your willingness to share your tender heart is affecting the way we pray and act toward those who have suffered great loss. God is using you. Even in this terrible time. He is here, He sees you, He speaks to you.

  27. My son has asthma and I have noticed something:
    when my son gets a flu he almost always goes in a very bad condition due to that asthma. When it happens I feel like a superhero which can take all hits. I smile, I play, I take care, etc... you know, all things what I think my son needs in that moment from me to go through those hard moments/days/weeks. And I do everything for him and I don't feel myself even a tired even though I sleep 2-3 hours at nights.

    Pls, don't get me wrong. I am don't comparing asthma to EB. Just saying that I know how you manage to be the superhero over two years: because of Tripp.
    And how Tripp manage to go through all that pain and still be so brave? Because of YOU and your love.

    I was thinking what you were saying about that God expect us love him more than we love our own childs. It feels.... wrong. How I can NEVER love anything more than my own son?

    I am here for you. Have been since I started to read your blog (two days after Tripp died and it was in our news here in Finland). And I think you are one of the bravest and strongest mom I have ever "known". You are my inspiration.

    BR/ Heidi from Finland

  28. Thanks for spilling the beans all over the place! It's allll good, and it's really healthy to let it pour out just the way you did.

    I really think you touched on something really powerful here. You were 110% ALL IN with Tripp, and because of it, you were the happiest you've ever been. I really think you are showing us all love's true colors. It can hurt like nothing else… true, but it also causes happiness like NOTHING else, because in it's most pure form, which you completely and authentically embodied and shared with us, love is free from circumstances and conditions. DESPITE witnessing all of Tripp's pain, you found your highest happiness ever. You loved your way right through it. Girl, you are an inspiration to us all on how to love like there's no tomorrow. Thank you for blogging again. I hope it's helping you, because it sure as heaven is helping all of us. :-)

  29. Praying for you so much at the moment Courtney. May your heart, mind and soul know the peace of God, which passes all understanding. Psalm 121 xx

  30. You know, I don't think anyone comes here to necessarily read about your day-to-day with Tripp, I think it is more to read how you are so open, raw and honest with your triumphs and struggles. We are very much interested in your "boring" life (as you said in a previous post).

    I think it is encouraging to see someone who can be all out with their struggles and still point to the One who redeemed us. It is nice to know, that in comparison, my problems are minor - and I need to be reminded to point to the same One who you point to.

    Does any of this make sense? In short, we care. I have never met you but my mama heart bends and sways with yours as you talk about your son. I have prayed for you. I have cried with you, although not nearly as many times as you have cried alone.

    We like the updates. I am watching for the day when you set a wedding date (or has that passed already??)

    Looking for the day when your pain is surrounded with joy as well, bittersweet I am sure - it most likely always will be that way, but joy nonetheless.

  31. You mirrored my same exact thoughts when it comes to having true faith. We all have different circumstances in our lives but I do believe we can connect and understand when it comes to our faith. We question it probably more than we should. And I have wonderful memories along with the bad in my valley but I do know that God is real and He is always present in my life, working out a plan for me. Even though you feel like he has never spoken to you, He has through the blessings you have received. Look who he chose for His child to be taken care of by. Look at the family he equipped you with to help you during it all. Look at the man he has placed in your life to give you a new happiness. It's not always Him "speaking" to us. He can speak to us through little nudges, through someone else, through so many different things. You keep holding on, girl. And thank you so much for sharing your testimony. And so many are praying for you!

  32. I'm so sorry ur hurting so much, I don't blame u. Tripp is such an amazing boy we all hurt and miss him with u :(

  33. You are the most real and honest person I have ever had the pleasure of knowing. Thank you. God has used your pain and grief in unimaginable ways and I am blessed by your story in numerous ways. My heart aches deeply for you and I am so sorry that you enduring this pain every minute of every day. It amazes me that you are able to write and reach out in the midst of the heartache but God is using it to touch others and in turn bring comfort to you. You are definitely the apple of his eye and he is so very proud of you. Tripp was the luckiest little boy to have had a mother like you.

  34. You continue to amaze me! As a mother, I just don't know how you do it every single day...but you do! God is definitely great, and you are definitely an inspiration!

  35. I'm so sorry, it's beyond words. I know what it's like to look back and just wonder why you didn't completely break down, but it's because you were a good mom. And please, don't say sorry when you're talking about your faith and God!! It's one of the reasons I come back to read your posts. To learn what you've learned. I can read as many words as you can write about God and your faith. I just want you to know I pray for you every single night, you're on my list of specific people to pray for, and I pray for you by name. God bless you.

  36. Hi Courtney

    I just wanted to let you know that I have been following your blog for a little over two months now. I just wanted to thank you from the bottom of my heart for sharing your life and your amazing Tripp's journey. You alone have renewed my faith I was lost and walking aimlessly, but you have shown me strength, faith and mostly love. You and Tripp have proved that this World is still amazing and wonderful. Thank you for what you have given me. I send you a big hug from California may God shower you and your family with infinite blessings. Once again THANK YOU.

  37. I just ran across your blog today. Researching to build a website for a college class. I'm a mom of three teens. Your blog touched my heart. I hope you keep the joy your son left in your life, and run with it. (o: That son of yours would want you to enjoy every bit of the world you can, for him, for you, and for everyone you love and who loves you back. Get out there and dig in. Find your niche. Keep the joy in your life, that you always kept in his. Many hugs to you!!!!

  38. Thank you for blogging again. Thank you for showing me tha there is life after the loss of a child, even if is not the life you planned and wanted. My son has cystic fibrosis, and his future is uncertain. it means a lot to me to hear from a mum who has been through it... is still going through it. You are incredilbly courageous.

  39. Dearest Courtney,
    Thank you for loving your little boy so much. And yes, the promise of what is to come with him is great and good, and that little saint is already experiencing that lovely glory, and your sadness is right and true and good. It is right to mourn, and your reflections are wise. you honor him. You always have. And it seems you still live as you should; these two experiences---living past and living now---they make you who you are and who he is (still!). Thank you for writing again.

  40. I am so glad you are blogging again! Many of us not only fell in love with your Tripp, but also with the amazing love you had for him. Thank you for writing again :)

  41. Just wanted to say you have been on my heart. Hope all is going as good as it can.

  42. So much love sent to you and yours

  43. Courtney and family,

    I often posted on your blog, but I got sick. I was diagnosed with stage III cancer. I did 7 weeks of radiation and 6 rounds of chemo. It almost killed me, but it didn't ;-)

    I want you to know that your blog and Tripp have touched my heart. On several occasions, I asked Tripp to intercede to God for me while I was fighting cancer; fighting for the chance to raise my kids. I had a list of saintly people I prayed to and Tripp was one of them.

    Courtney, I'm so sad that you have suffered so much with everything that Tripp went through and for losing him. Yet, know that you have not lost him. He is in the Communion of Saints and watches over you and your family. One day you will be reunited with him again.

    "'Cry out. What shall I cry? All flesh is like grass and their glory like the flower of the field. The grass withers and the flower wilts but the word of God lasts forever.'" (Psalm 40)

    "Whoever does the will of God remains forever." (1 John 2:17)

    Courtney, God sustains Tripp even now. Tripp is with God and one day God will give Tripp a glorified body.

    Courtney, ask God to grant you healing and peace. Ask Tripp to intercede for you.


  44. I wish I could help you in your pain. I would like to tell you something from my childhood when I was very sick and in pain. I had a kidney problem with high fever and ache. I felt terrible could not eat womiting. It took days at a time but game several times. BUT. I was always with mommy usually at home but also in hospital. I felt pain and felt me so sick but I always had my mommy. That feeling brought me some kind of cloud surrounding me. Safe cloud, love cloud. Even in pain i felt easiness of the child. I was with my mommy. I am sure that Tripp had the same kind of love cloud. He had his mommy. He could feel safe in his enormous pain. Little Tripp had his darling mother. An example from everyday life. A child falls on asfalt and hurts his or her knee. So painful. Does a child think that his mother is bad now he has this knee wound aching? Of course not. The knee hurts yes and mother loves me. The love cloud separates him from hurting.
    And Courtney sweetheart sadness you feel is love. Turn to think always you feel sadness thowards Tripp to how much you love him. Love this very moment. And going to love everafter. Your precious Tripp lives in you Courtney. Playing drums in your soul. Love is not sad love is happiness. See, you are happy again. Tripp is happy again. You both are and continue your life together. Yes untill you see again. :)
    Warmest regards
    from Finland! (Hope my language was ok..)

  45. I miss hearing from you, best to you and your family in 2014

  46. Hello! My name is Louise and I'm from Sweden. I came across your blog quite a long time ago, read everything and was incredibly moved by your big heart and your son who seemd to be such a wonderful boy. Today, out of no reason, I came to think of you and thought that I should visit your blog and send you some love. Hope that you're doing ok

  47. Thinking of you today and praying for peace for your broken heart. Much love.

  48. Praying for you today and always, Courtney. You and Tripp have been on my mind all day.

  49. you are so so so amazing. he is so blessed to have you as a mother!

  50. Courtney, wondering how things are going for you. Hope you're ok. We miss you!

  51. Please keep blogging we would love to hear how you are managing and Tripp is still continuing to help you along!

  52. Postive thoughts are with you everyday but especially today! Hope all is going well.
    Melissa Lanier

  53. I just wanted you to know that you are in my thoughts and prayers. I found your blog about 6 months before Tripp passed away. I was blown away by your strength. I know that your world with never be the same. I am glad that you do find happiness in parts of your life. Hugs from Colorado