Monday, April 23, 2012

My pathetic posting...or lack thereof.

Well, it's been almost a month since I've posted, so I guess it's about time to spill the beans again.  I think I've been avoiding my blog posts because I hate being a negative "debbie downer." But I don't like to be fake, either.  I just think I'm at the stage (if there are really even stages) where I'm a little frustrated.  Ok, so I'm angry.  And I really don't like that I'm angry.  I just find myself thinking about things a lot more now.  I find myself saying "it's not fair" a little more (which isn't really like me).  I think at first I tried so hard to just shut everyone and everything out... and not even think about things because thinking about everything that just happened made me so incredibly sad beyond comprehension.  And I just didn't know how to express my emotions or sadness.  Actually, I still don't know how.  But I know that if I don't try, I'm going to explode.  


I'm at the point now where it's so hard to see little boys that would be around Tripp's age, with dark hair and dark eyes, hugging on their Momma's leg in church...  It's hard to think that at the age of 3, Tripp would have been talking up a storm, probably giving me hell because he would have been so spoiled rotten.  I want that so bad.  
It's hard to do anything without picturing Tripp there with me.  And longing for him to be there with me. 
I don't even know what he would have looked like at age 3... because EB took that from him and from me.  For the last year of his life, I didn't get to see his pretty brown eyes. 
It pretty exhausting holding things in.  And it's exhausting pretending like I'm fine. 
How in the world could anyone be fine after losing the only person they wanted to live for.   


That's why I finally broke down and found a counselor.  I had my first session with her last Wednesday and I have my second session tomorrow morning.  I'm hoping that if anything, it will at least allow me to let out my tears and emotions.  Because I certainly don't do that enough.   
The first session was mainly about us meeting each other and then me summarizing the past 3 years for her.  So pretty much.. me crying and talking, and her just listening... it went well.  I think she will be a blessing to me.  
The main thing that stuck out to me that she said in our first session is that I am putting up a "Me and Tripp" wall.  She said that by me not sharing my feelings (my TRUE feelings) with the people closest to me, that I am putting up this wall that doesn't let anyone else in.  And that's not good.  The people who are there for me everyday want to help- they want me to open up.  And I'm not letting them in.    
That is going to be something that I will have to practice... because I'm terrible at letting people in.  Somehow, it's easy for me to sit behind a computer screen and let you know what I'm feeling, but it's another thing for me to be able to open up face to face.  I'm just so used to having to "hold things in" that I'm clueless when it comes to "letting it out."  But I think it's one thing to share my feelings with the people closest to me (my family, Stephen, close friends) but I feel like I shouldn't be real all the time... or should I?  Would it help me or not?  Who knows... Like when I see someone and they ask me how I am, and my instincts say "I'm good... how are you?"  Then I think to myself... "of course I'm not good... I'm terrible, I just lost my whole heart... how could I be good?" I guess I just don't feel like it's fair to people for me to be honest about how I really feel.  People ask that to be respectful and kind, really not knowing what to say.  I hate to just "lay it all out" on them.  But then on the other hand, I feel like its unfair to me to have to pretend like I'm okay when other people still have their kids and their life continues, but my child is gone and I feel like the world should just stop.  
Is any of this making sense?  I will stop rambling... 


Today I spent 3 hours with some pretty amazing people at Amite Marble and Granite.  I'm not sure if I've mentioned this before, but it just so happened (actually I believe God planned this all along) that Tripp's amazingly wonderful pharmacist, Trea, also has a pretty amazing father who owns a marble and granite shop and makes headstones for a living (coincidence?... I think not).  
So, after thinking really hard for 3 months about how I could create the perfect monument to honor my baby, I finally got to design what I wanted with the most kind, patient and amazing people. 
That has to be one of the hardest things on the planet... to have to pick out a headstone for your child.  No one should ever, ever have to pick out a headstone for their child.  
But I know that you will all love what I have decided on.  And I don't think I could have picked something better than I did.  We only have the rough draft drawn up, and it will probably take about 4-6 months to complete, but I am pleased so far with what I have chosen.  
I can't wait to share it will all of you. 
It just might involve someone's favorite furry red friend...  


May 13th is Mother's Day. 
May 14th will be Tripp's 3rd birthday and it will also make 4 months that he has been with Jesus. 
Needless to say, it will be a really hard week/weekend for me.  
SO, mom and I decided that we are going to take a trip to Albuquerque to visit my sister and her husband (they are stationed there for 6 months before they move to Georgia) for the week.  Our tickets are booked from Friday the 11th to Wednesday the 16th.  Part of me feels so guilty for leaving this house at this time, but the other part knows that being here and being around kids, going to family parties and being around Tripp's things will be so hard for me.  It will be hard no matter where I am... so we decided that Mother's Day weekend would be a good time to take the trip.  


I had initially wanted to do something big to honor Tripp on his 3rd birthday- a big party with whomever wanted to be a part of his special day, attempting to also raise more money for EB in Tripp's name.  
But now I'm leaning towards something different.  I don't think I'm up to a big party where I have to put on my happy face and pretend like my heart isn't broken.  
So I decided that the only thing I want to ask is for anyone who wants to honor Tripp on what would have been his 3rd birthday- is for a donation in his name to The Butterfly Fund.  Mrs. Laurie Sterner and the Butterfly Fund are very special to me.  They play such a huge role in helping with the very personal needs of families affected by EB.  And I think that it is extremely important that we help in keeping her fund going strong.  And of course, I believe finding a cure and funding research is important as well, but I also believe that while we are working on a cure, keeping these poor families going is something that is just as important.  It's impossible to do without help and support.  And Mrs. Laurie and the Butterfly Fund were a huge support to us for the 2 years and 8 months that Tripp was here- and they continue to be a support to me to this day.  
So, if anyone has the desire to do something in my baby boy's honor and also in honor of anyone who has lost their life to EB, or anyone who is still fighting hard against EB- that is the only thing I ask. 
You all have always been so amazing and I appreciate it more than I could ever tell you.   


All I'm doing is trying my hardest to stay as busy as I possibly can.  Which I know is not always the best thing, but it's the only thing I know how to do right now.  I'm sorry for not keeping up the blog like I should.  I guess I just feel like I'm repeating myself and I feel like a broken record.  
If anyone has any great ideas on things I could do to keep up my blog better or things I could post about that you guys would be interesting in knowing/seeing (about Tripp or EB, of course:), please feel free to throw ideas at me.  Maybe it will help me with my grieving process as well (stupid grieving process... no one should ever have to grieve for their child).  
And I'll try to do better with taking down my "Me and Tripp" wall and letting you guys back in. 
Just let me know when you're tired of my "debbie downer" posts...
Thank you all, again and always, for the unbelievable amount of support.  
Thank you to everyone who has sent cards, emails, gifts, and letters of encouragement. 
It means SO much to me. 
I am so blessed. 


Love,
Photobucket

196 comments:

  1. Sweet little baby couldn't have had a mommy who loved him more...

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  2. Its good to hear from you-I still pray for you-I have also lost a child...she was 49 days old-she passed away from several heart defects-we were at New Orleans Childrens Hospital-and Calli passed away 4 days before Katrina...so the services and everything were...just HELL...sorry but that is what I felt (and sometimes still feel) like I was living thru...Its late and I wont keep you but I am SOOO GLAD TO SEE SOME WORDS FROM YOU...You do WHAT YOU FEEL LIKE DOING...there is NO RULE BOOK...sometimes I think it would be easier but...You have my prayers and my friendship-if you ever want to spill to me my email is Phyllis_donaldson@yahoo.com...with Love, Phyll

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  3. Courtney, please, please, please, do what you need to do... blog, talk to your counselor, pray, yell at the heavens, call a new or old friend or family member, or whatever else helps you get those feelings out and get some support. Tripp would want you to take care of yourself, in whatever way you need to. Hugs to you and your family as you walk this part of your journey.

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  4. I can't think of anything inspirational to say but prayers are with you.

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  5. You give me a reason to thank GOD everyday.I am very thankful for three healthy boys,and on bad days I think about what you went through and I just want to hold my boys and never let them go.I cant imagine what you are going through but just know that you and Tripp are in my prayers.

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  6. Courtney, you make perfect sense. I have a dear friend who lost her baby boy to SIDS and she has said some of those very things....and I have listened. But you and she have also been shining beacons of inspiration in your faith (so hold tight to your faith!!!). When her baby boy died, that very night she was in church....holding other babies. I don't know how you go on after losing your babies but you and she are doing it. I think you're doing the right things....don't be afraid to say it, cry it or yell about your pain and hurt and anger. You're allowed and we're here. You are in my prayers.

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  7. Courtney, you are an inspiration! You NEED to let it out! I've been surprised following your blog how strong you have been (or at least been acting). You totally have the right to break down, cry, be a debbie downer, it's part of the process. I don't know you, I know someone that knows someone that knows you (HAHA!)who mentioned your blog to me about a year ago and I have been following you ever since. I have never "met" anyone so strong and courageous! Hang in there, keep up with the counselor, and have a wonderful trip!

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  8. You are NOT a Debbie Downer! You are just being REAL! Your reality is heartbroken, sad, hurting. For those of us who have come to love you and Tripp through this blog, that is what we WANT to read...how YOU are doing, REALLY doing. Reading whatever it is that is on your heart. It may feel like rambling but, like I said, it is what we blog-world friends want to hear. I want to know how to pray for you, so when you are open and honest it helps me pray more sincerely for you. You are so special and amazing. You are a wonderful and amazing mother (regardless if your child is in your arms or in Heaven). We are all here to love and support you, and I am so thankful that I "know" you. Lots of love and prayers going out for you. I love you!!

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  9. We will never get tired of your debbie downer blogs :) we all loved tripp and we all care about YOU! you do whatever it takes to heal. I think therapy is a good idea...Im praying that you find some kind of peace.To keep busy maybe you could make things (whatever youre good at) and donate to the other EB kids in Tripp's honor, and let us know so we can help too :)

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  10. Courtney, please, please, please, do what you need to do... blog, talk to your counselor, pray, yell at the heavens, call a new or old friend or family member, or whatever else helps you get those feelings out and get some support. Tripp would want you to take care of yourself, in whatever way you need to. Hugs to you and your family as you walk this part of your journey.

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  11. Courtney, You are not a Debbie Downer! What you are feeling is natural and talking about it on here is probably very therapeutic for you so keep writing what you feel. Kudos to you for seeking help. That is a big step! Always praying for you, your family, and of course your angel Tripp.

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  12. You are never a debbie downer. We all care and wish the best for you! I think about you often. I think you should do some posts on EB (before Tripp, I knew nothing of it), your future plans (going back to nursing?), and just be honest--tell us what's on your heart. We aren't going to judge, just support.

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  13. Courtney,
    My heart is bigger because of you. I hope our big hearts and our tears find their way to confort you. I hope you can find patience with yourself. Your tears will come, you will allow those closest to you in to hold you up. For now, you will hold your Mommy & Tripp wall close to your chest, it is your strength. You will hold your tears inside. When you are ready, you will still have everyone here just as we are today, we were yesterday, and we will be tomorrow. You shared the most precious gift ever with all of us, and I know that I am forever grateful. Your heart i'm sure feels broken, but it will heal. It will heal because of the love Tripp has for you and all your love for him. When you stop holding your heart together, the love will put it back in place. It will always be full. Your memories will always keep you close. It is not fair! But your love is forever.
    Thank you for sharing, for posting. Thank you for your honesty. In the days, weeks and months ahead I hope the prayers for strength and comfort help you through. xoxo with love & admiration,
    Leslie Schaefer

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  14. You are not a Debbie Downer, you are grieving and that is perfectly natural! You should know by now, all of us readers support you and we want to be here for you however we can...if you want to blog about it, by all means do! (I sometimes find that writing my most negative thoughts down helps me out, even if I end up deleting it later) I'm glad you've decided to see a counselor, I think that is a great idea and I hope it will help you find some peace on this long journey.

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  15. You will be loved no matter what you post about. For sure. If you need this to be a place to be 'real', then I'll listen. If you need it for anything else, I'll listen.
    You are so admirable for so many reasons. I am a huge fan of yours and just know good things are to come in your life, although not necessarily right now. & I'm hoping you'll allow me (& your other fans) the chance to be cheering you on.
    Please don't leave me hanging...you are loved. All the way here in Utah.

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  16. Going away in May will be so good for you although I imagine still hard but just allow yourself to go through the emotions! You are one of the strongest, young mothers I have ever "known." Your 'debbie downer' posts, dont say that... youre going through an unbelievably hard time and until your spirits begin to lift a bit please do me/US all a favour and VENT, YELL and SCREAM!! Thank you for making me a stronger mom/woman through your experience and sharing with me!
    <3 Hope W, from Canada!!!

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  17. Honey you are not being a "Debbie Downer", you are just being real. You have every right in the world to feel the way you do. Don't be ashamed of your feelings. You have been through a great deal and it will take time for your heart to heal. Grieving is a natural process that we must all go through, give yourself some time. Seek God for comfort and reach out to those who love you and care for you. God created family and friends for us to lean on. You are by far one of the best Mother's I have ever known, and we have never met. I have nothing but the utmost respect for you. You loved your baby with all of your heart and gave of yourself unselfishly, be proud of that. Tripp knew he was loved. That is evident in those beautiful smiles he always gave. I pray that God will comfort you and that you will heal in time. God Bless you sweetie.

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  18. I know it must be hard to see the little boys here and there, I think its Tripps way of letting you know that he is all around you, in those little faces...take those moments and ask God to allow you to grieve and to show you when its time to stop and start living again...This is normal...and you will make it through...Praying for you...

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  19. You are so brave, Courtney! Working through change is really, really hard work, even when the change is something much less burdensome than losing your precious son. We will never tire of reading the words on your mind--just like stagnant water becomes infected, pent-up emotions will do the same to your spirit. So many of us wish we could have taken Tripp's pain away, and now wish we could somehow take yours away, too. Our hearts ache to help lift the load; to ease the heavy burden....but we can't do that if we don't know how to pray; what your days are like. So tell us, please. You're still doing a great job being Tripp's mama--you're alive and you're here, choosing to wake up each day and do something. Anything. I imagine each day away from Tripp is torturous, and feel like you can't escape the reality of pain everywhere. As unique as your situation is, you are never, ever alone, Courtney. I'm sure you never dreamed of what 4 months without Tripp would look like, but you're doing it. You're doing the hard work, one day at a time, and we are all so proud of you. Praying for God's Spirit to dwell over you tonight!

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  20. Courtney, this post is raw and honest. It is good to read. I just lost my daughter on April 16th, at 8.5 years old. This is a journey I don't know how to travel on, and I am sorry that you are on the same journey. :(

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  21. Courtney,
    You are so right, no one should ever have to pick out a headstone for their child. The 5th anniversary of my son's death was on April 13th. If you feel up to it please read the blog entry I wrote. Maybe there will be something in my words that could help.
    Jennifer

    http://neversaidiwasnormal.blogspot.com/2012/04/thoughts-on-five-years.html

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  22. Never feel like you have to put on a face. If someone asks you how you feel and you feel terrible, you tell them! You have earned the right to be real. I have had three miscarriages and during that time I felt everything you are feeling now. Maybe on a different level, I never had the opportunity to look into their eyes and love them as you loved Tripp, but the pain was real. And if I wasn't doing well I finally got to the point when I would just say, you know what, I hate everything today, or I'm really doing pretty sucky. I also finally got on zoloft...I've never been the type to depend on anything or anyone but myself, but there is a reason God allows us access to anti-depressants. Because sometimes, we get depressed, and for good reasons. I'd encourage you to pursue any means necessary to help you heal and make you feel better. You deserve happiness and you'd be doing Tripp a disservice if you didn't have a life without him...he'd be so mad at you! You better beat on some drums and watch Elmo and do everything else that brought a smile to his face, and brings a smile to yours. Moving on is the hardest thing anyone has to do, and there's a reason there isn't a word for a parent that loses a child, its not natural. But know that you and Tripp are loved by people you do not know and are prayed for constantly. Let me know if there is anything I can do for you. I'm praying for you and your happiness, it will come again.

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  23. My heart breaks for you...I know that physical pain. It takes time. You will smile again, I promise. CJ

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  24. you are an inspiration! you being strong for everyone else is your way of moving on! but it is ok to feel your sad emtions too! we are still praying for you! i have never been privelaged to have children, i could never fully understand your pain, but you have touched my soul and are a great person to know of! you have helped me become a stronger, more faithful person. keep your head up, but it is ok the let out your emotions!

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  25. There are so many people that love you and of course, Tripp. You and Tripp became a part of everyone's family through your blogs. We still care about you and no matter how much of a "debbie downer" you think you are, we still want to know how you are. And we understand how unfair it was for you to have to lose such an amazing little boy so no one will ever look down on you for letting your anger and frustration out. Talk to us about how you really feel...we will listen. We have shared in your pain and cried tears for you and Tripp. We want to be there for you still, even if it's just through your blogs. It is hard to lose someone. I can't imagine the pain of losing a child. Sometimes it's hard to express your feeling with someone but not as hard on the computer. So open up your heart and poor out your feelings...we're listening and we want to help you. Please try to enjoy your Mother's Day weekend. Your baby boy will be with you in spirit, free of pain and suffering. You and your family are always in my thoughts and prayers! Tripp was lucky to have such a wonderful, loving mom. We love ya, Courtney and your Facebook "family" are always here for you. We miss you, Tripp!
    - Lorie Ward

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  26. I think it is completely normal for you to feel like this. Any parent that has lost child goes through this. You are an amazing person and I know that Tripp is looking down on you and knows that his Mommy is doing the best she can through something that no parent should have to go through. You are so strong and I believe once you are able to open up to those closest to you and begin to find any kind of closer that you will feel better. You will always have that space in your heart and think of Tripp always but one day (could be next week or next year) you will be able to wake up in the morning and smile knowing you made that little boys life the best he could have had with the things he was given. You are such an amazing person and I think that all of this will come on your own terms. You can't rush healing and you have to just take each day as it comes and do what you think is best for you. No one can tell you how to live your life now that he is gone, but just know that he is looking down on you and that he will always be watching out for you. He is your own personal guardian angel and though that doesn't make up for the fact that he is now gone, know that he will always be with you no matter what. I hope that you are honestly able to find peace. You are an amazing Mommy and always will be whether he is here or not. No one will ever be able to forget him because you keep his memory alive and keep fighting for the children and families that are going through what you went through and what you are still going through. I wish you nothing but the best. As for the blog, I think you are doing amazing with it. I don't think you are a debbie downer. i think you are a grieving mother who has to let her feelings out and this is the only way you can see to do it. I think subconsciously you know we have all been behind you and watching you go through all these things and feel like you have to let us know how you are doing. Take it one day at a time and just post when you can. It can be a sad post or a happy one, but know that the people that read this blog are praying for you and wishing you nothing but the best in what is sure to be a hard next few months and years in the future. You went through something life changing and no one expects you to get over it right away. I have faith that one day you will be fine and will continue to pray that you find the peace that you deserve.

    Tracy

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  27. Oh hon, my heart aches for you...You have every right to be sad and angry and cry. I am so glad you have met with a counselor that you feel comfortable with and that you can be you, the real you.

    I appreciate your honesty with this blog and I do NOT think you are always "debbie downer" posting. You are "FEELING" posting. I would be more worried if all of your posts were about flowers and roses and how good life is, because I know it's not. And I don't see you as being a good liar.

    You are honest and loyal and love that little boy with all your heart and then some. I can't wait to see what the stone will look like. I wish I lived closer so I could see it in person when it's done.

    You will heal, Jesus promised us he will heal us, BUT I also know that it won't happen overnight. And THAT is ok too. Even though your posts speak of sadness and heartache, they are still uplifting to me. They inspire me to be a better person. They help me to remember what really is important in this life. So please don't apologize, and don't stop writing.

    You may not have Tripp to take care of physically anymore, but I depend on your words of comfort. You seem to take care of me on my worst days by the simple, honest feelings and words that you express.

    I am excited that you get to visit your sister for Mother's day. I am sure you will enjoy that VERY much!

    Please be safe and remember that we are always praying for you! Much love!

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  28. I think you are amazing. Please don't ever feel like you are a downer. You are human. You are grieving, and we are grieving with you. You go ahead and write whatever you need to, whenever you need to. We are your virtual shoulders to cry on and eyes to "hear" what you need to get out.

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  29. Courtney! I nope this blog continues to be an outlet for you to let your feelings out, you have been thru something that the rest of us mothers fear more than anything and I just can begin to understand or even imagine the pain that u are going thru and will continue to do thru. Everytime I read your post or think of Tripp it makes me hug my kids a little tighter. We think of tripp often and be of Tripp I am trying my hardest to get Joshie into Elmo, tripps best friend! We just got josh a shirt of Elmo just like one Tripp had warn. Our prayers are always with you and you keep doing whatever it is that you need to do to deal wit the grief! I will always be hear to read your posts and pray for the healing of your heart.


    Tawny

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  30. Courtney, my heart still breaks for you. I so enjoy your blogs and have no complaints about them whatsoever. You are an amazing lady and you will grieve in time, in your time and God's time. He is still watching over you and always will. You are an extremely special lady and one day you will be okay, not great, but okay. You will see. God will pull you through this. I will be donating in Tripp's name to The Butterfly Fund on his birthday. Love and hugs to you sweet lady. Please send love and hugs to your mom too. God bless.

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  31. I am praying for often. You come into my mind alot when I'm just doing everyday things. I couldn't sleep last night just because I had alot on my mind. Then your name came into my mind in the mist of my thoughts. It makes all the things that are going on seem so small. May you continue to heal and fight Tripps fight. May God bless and all those around you.

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  32. Keep on posting!!! Everyday I wonder if you're doing ok good or bad! I think I need to know you are still there...you are still in our prayers everyday!!!!

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  33. Courtney, to deprive you of your mourning process so that we can walk around "feeling good" would be an indescribably selfish thing. You owe the people that follow this blog faithfully nothing more than you, who you are, where you are in your heart, soul, and spirit... That's it. Isn't that what this blog has been about for so long? Us following your story. Yes, it's Tripp's story, but as adults the emotional attachment formed through this blog is to you and YOUR journey. We can't identify with Tripp and his pain.... There is no way we could ever understand that pain, we can only be inspired by his strength and sweetness. But YOUR pain, that is what is real to us Courtney. That is a pain we can identify with. The unimaginable pain of what it might feel like to lose the most precious thing in our life... That's what pulls our heart's strings and makes the tears flow.

    With that said, denying yourself the ability to grieve is the LAST thing I think anyone who has read this story wants. You are entitled to every bit of denial, anger, bargaining, depression, and God willing, acceptance. You are the one who walked that pain every day while Tripp was a live, you are the one sitting in the aftermath now. Fall to pieces! God will put you back together again eventually. Melt into a puddle. You know giving up isn't an option and you'll have to get back up again eventually. Type in all caps when you want to yell! The people who follow this blog with the intentions of lifting you up and helping you through your pain, are perfectly okay with that.

    In a previous blog you said something that was so profound to me. You were struggling with the fact that Tripp left you here, and that you wished you could just be with him in heaven. And then you said that you were starting to realize that nothing in this world really matters. I know that what I'm about to say will be no consolation in light of Tripp's passing. But I don't think you realize what an amazing gift it is for God to give you, especially someone as young as you, as the understanding that NOTHING in this world matters. Tripp knew that. He came here with a big, huge cross to bare and a mission straight from Jesus. He bore it so gracefully, and he went home to a Savior that no doubt spoke the words, "Well done my good and faithful servant." You were given a cross too. And we don't know why, we don't know why God gives some people a huge mission and others not so much. But the cross He gave you to bare is part of your mission here, as His good and faithful servant. There is something that He put inside of YOU that is so big, so fundamentally profound in the Kingdom of Heaven that he entrusted this mission to you. And when you can grab ahold of that Kingdom perspective, of living in the light of eternity..... that understanding that NOTHING in this world even matters, save for Jesus, Courtney, you are going to reach MILLIONS for the Lord. You already have, honey.

    I'm so sorry that part of that is having to endure excruciating emotional pain. Like I said, our ways are not His ways, and I don't always understand His ways. But Jesus is the Almighty Healer, and the Holy Spirit is the Great Counselor. And with your faith, YOU WILL GET THROUGH THIS. And you will meet your son again at the gate, hearing the words, "Well done my good and faithful servant." And the beautiful thing about those words is that in heaven all your tears get wiped away, and you will no longer have memory of this pain in your heart. I pray for you daily. God bless.

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  34. You AMAZE me!! I dont think your posts are debbie downers! but I think you should let it all out!! I am praying for you and your family! Mainly you, hoping you finally get some closure.. You are such a strong woman and just roll with it! Tripp was lucky to have you as a mother and thank you for sharing him and your story with me!! I pray that a cure is found soon for EB so another child doesn't have to hurt like Tripp.. He has his wings and he is watching over you and smiling! He is proud of what you were when he was here and what you still are to this day!! His mother, his voice!! ((hugs))

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  35. Courtney - when someone asks you how you are doing - yes, be honest. Maybe something like, "Well, to be honest, I'm dying inside. I am struggling. But I am still walking forward, and still trying..."

    That way, you are honest, but giving them a little bit of hope too. (Not that you owe anyone that - you don't. You're not responsible to keep everyone else happy.) But since you seem to worry that people won't know how to handle your grief or honesty - maybe a mix would help?

    Listen, you are so on my heart and in my heart. I have been praying for you and hoping to see a post pop up - not because I'm curious but because I am simply concerned for you and am hurting with you.
    But here again - don't feel pressure to make everyone else happy. We're okay with whatever you can give, whenever you can.

    Your Tripp is so beautiful. Keep believing, Courtney - that you will see him again. Don't ever lose sight of that. (())

    I am sending so much love, and wish that I could carry some of your pain.

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  36. Courtney.. where do I begin.. never feel like you're burdening people by saying you aren't ok. I learned that after the loss of my mom, I was 17 and will be 25 this year. I shut people out like you. There are "stages" to grief and you'll find yourself bouncing between them. There's no set time on how long you have and there's no set way that you'll move through the stages, you'll go from anger to sadness, to disbelief and back to anger, and so on. I'm not going to sit here and say it'll get better, because in honesty it won't, but it will get easier. You have to trust that. Allow days for yourself. Take a drive to a place you've never been and allow yourself to cry. Find someone, one person, that you can break down with. For me that was the biggest thing I found that helped. It took me over a year to find that person and he let me cry for 3 hours without ever saying a word. Allow this place to be your sounding board. Know that there are people willing to "listen" here and give you words of encouragement. Even if all you feel like doing is complaining about the weather. I had a diary after my mom passed away and found that it helped, but when I wrote it where I knew others would read it, it helped even more. Know that Tripp is never very far from you.. he's in the gentle breeze, the warmth of the sun, the beat of your heart, the soothing waves at the lake, the morning song of a bird, the twinkle of the stars, the raindrops on the roof, the fluttering wings of a butterfly.. he's everywhere you are. He had such an amazing mother in his short time and is now your guardian angel in heaven as you were his when he was here on earth. Never think of yourself as a "debbie downer." Even though our loses are different I've found comfort in your words. When I found out Tripp had gone, I asked my own mother to please look for him. She loved children and I know she would look after him as if he were her own until you could be with him in heaven. I hope you don't mind and I hope it comforts you knowing he's got someone looking after him up there, even if it's a complete stranger. Continue to blog when you're feeling up to it and know that we understand if we don't hear from you for a while.



    Samantha

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  37. Everything you are feeling is SO normal. Grief is a path that is personal. Not one person goes through the same thing. But it's very normal what you are feeling. It's been over 3 years since I said goodbye to my son & I still struggle. It's one day at a time, one breath at a time. But never feel afraid to express your true feelings.

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  38. I will never be tired of hearing anything you want to share.... I have two children of my own and my heart truly breaks for you. I know you will alway ache for Tripp but I hope with time it become a little more bearable. You are the most courteous person I know. God bless you!

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  39. Courtney thanks for the update and wanted to say with what you just wrote in your blog is a beginning of taking down the wall! I went through counseling myself and one thing that was mentioned was to write your feelings out on a paper so its out of your mind! well ur doing that along with being in this format the ones that are close to you can also see whats on your mind without the face to face u can work on that later! Steps lil steps even move you forward!

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  40. Let me know if anyone tells you that you are being a debbie downer...I'm from Texas and we don't take kindly to people being rude! You pour out your heart as long as you need to!!!!!!! If nothing else, let this be the place that you can get as "real" as you need to get with your pain. We all come to the blog to check up on you and to offer our prayer support. You would be severally abnormal if you were feeling "normal" right now. I pray that talking with a counselor helps you grieve. Tripp would want his mommy to be able to find some peace.

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  41. Oh sweetie! this has got to be the hardest thing for a mom ever. just do what you feel capable of doing. if it's blogging once a month, that's fine. if it's leaving town on mother's day, that's fine, too. there are no rules. just know that you're loved by many, prayed for constantly, and in our hearts, just as Tripp is.

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  42. Courtney, to deprive you of your mourning process so that we can walk around "feeling good" would be an indescribably selfish thing. You owe the people that follow this blog faithfully nothing more than you, who you are, where you are in your heart, soul, and spirit... That's it. Isn't that what this blog has been about for so long? Us following your story. Yes, it's Tripp's story, but as adults the emotional attachment formed through this blog is to you and YOUR journey. We can't identify with Tripp and his pain.... There is no way we could ever understand that pain, we can only be inspired by his strength and sweetness. But YOUR pain, that is what is real to us Courtney. That is a pain we can identify with. The unimaginable pain of what it might feel like to lose the most precious thing in our life... That's what pulls our heart's strings and makes the tears flow.

    With that said, denying yourself the ability to grieve is the LAST thing I think anyone who has read this story wants. You are entitled to every bit of denial, anger, bargaining, depression, and God willing, acceptance. You are the one who walked that pain every day while Tripp was a live, you are the one sitting in the aftermath now. Fall to pieces! God will put you back together again eventually. Melt into a puddle. You know giving up isn't an option and you'll have to get back up again eventually. Type in all caps when you want to yell! The people who follow this blog with the intentions of lifting you up and helping you through your pain, are perfectly okay with that.

    In a previous blog you said something that was so profound to me. You were struggling with the fact that Tripp left you here, and that you wished you could just be with him in heaven. And then you said that you were starting to realize that nothing in this world really matters. I know that what I'm about to say will be no consolation in light of Tripp's passing. But I don't think you realize what an amazing gift it is for God to give you, especially someone as young as you, as the understanding that NOTHING in this world matters. Tripp knew that. He came here with a big, huge cross to bare and a mission straight from Jesus. He bore it so gracefully, and he went home to a Savior that no doubt spoke the words, "Well done my good and faithful servant." You were given a cross too. And we don't know why, we don't know why God gives some people a huge mission and others not so much. But the cross He gave you to bare is part of your mission here, as His good and faithful servant. There is something that He put inside of YOU that is so big, so fundamentally profound in the Kingdom of Heaven that he entrusted this mission to you. And when you can grab ahold of that Kingdom perspective, of living in the light of eternity..... that understanding that NOTHING in this world even matters, save for Jesus, Courtney, you are going to reach MILLIONS for the Lord. You already have, honey.

    I'm so sorry that part of that is having to endure excruciating emotional pain. Like I said, our ways are not His ways, and I don't always understand His ways. But Jesus is the Almighty Healer, and the Holy Spirit is the Great Counselor. And with your faith, YOU WILL GET THROUGH THIS. And you will meet your son again at the gate, hearing the words, "Well done my good and faithful servant." And the beautiful thing about those words is that in heaven all your tears get wiped away, and you will no longer have memory of this pain in your heart. I pray for you daily. God bless.

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    1. I have briefly browsed the other comments to this post, but I just have to say that your comment made me cry. It was profound and very meaningful and I'm sure it will bring comfort to Courtney.

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  43. i would love to tell you something to make you feel better, but like many I am sure I just can't. You are doing everything right, no matter what it is you feel like you have to do. there is no way to know how to deal with all of this. But please know because of you there are thousands of people like me who have learned more about EB and who have a passion to spread awareness and raise funds, as well as hope for research, a cure, and for the families effected by EB in anyway. If it weren't for you I would never have been given the opportunity to advocate for sweet baby Neal to be adopted. Oh how I wish I could adopt him. Please visit HelpNealEB.com and find and "like" our facebook page, Help Neal, and PLEASE share his picture and story for me! the more people who know about him the better his chances will be, he NEEDS a mommy! (hopefully as sweet as you). its because of you and your sweet baby that so much stuff like this is happening. We love you and are praying for you and thinking of you constantly. Just keep being you, you've one great this far, even when you feel lost.

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  44. Courtney, even in your, as you call it, "Debbie Downer" mode...you still amaze me! As far as I am concerned, you can share how upset/grief-stricken/angry/heartbroken or whatever you are as much as you feel like! These are your feelings and you are entitled to feel them and definitely to express them! Getting them out is absolutely better then holding them in because they will surely start to suffocate you in time! You are still and will always be an amazing mommy, person and inspiration to us all!! We will continue to support you in your fight for EB awareness and a cure a we will continue to pray for you as you try to go on with your life. We love you passed the moon and the stars

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  45. Just taking a few minutes to update at all is a good step. Everything counts. Here's a topic that has been in my mind as I have read your story the past few months, and I know it may be something you may not want to talk about at all... what about Tripp's father? i know that he has been gone from your lives from very early on, but does he have any emotions about this? Does he even know? I couldn't imagine letting go of such an important person in his life (obviously Tripp) and never taking the opportunity to spend time getting to know such a special little guy.
    Still hoping for peace and comfort for you!

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  46. Courtney - you are such a sweet woman. When I first heard about Tripp, it was right after he passed away - I spent all afternoon crying my eyes out. As a fellow mother, I can only imagine the heartache. Don't worry about being a 'Debbie Downer'. Go through the ups and downs that you want to - feel the feelings that you have. You have been so kind to keep us updated - but don't feel like you are letting anyone down by not posting enough, or by feeling like your posts are negative. This is your story, your son, your journey...and you tell it how you want to. I truly believe that you were specifically designed to be Tripp's momma - no one else could have done it better than you - and that little boy was so blessed to have you as his momma. You are in my prayers - I don't know all the 'right' things to say - but I hope you have as good of a time as you can in Albuquerque.

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  47. Courtney, Thanks for the post, we think of you and Tripp often and pray for peace. Keep it real, and please remember, you never ever get over it, you just become used to it. Sending love and hugs your way, Erika in WI

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  48. Courtney, my heart hurts for you! I check your blog 2-3 times a week just so I can check on you & when post something new it is something I will read with my heart! I know you do not know me, but please know that you are in my prayers and thought almost daily.
    God, is holding that sweet angel close to his heart what a beautiful thought know he is in heaven with Jesus, my angel baby, my beautiful mommy & my brother I would like to think they know each other. =o) and they are playing together.
    Grieve, the way you want/ need to grieve, do not worry about others, be real, scream,cry, stomp your feet & hands do whatever you can to help you. I will continue to pray for you .
    Many Blessings

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  49. Tripp was your soulmate. You WILL meet him again one day. Until then, hold him dear to your heart, live for him every day and dream about him every night. My prayers are with you...

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  50. Oh forgot to mention, when in Abq. NM eat some yummy green chili.
    Some good restaurants are: El Pinto, Los Quates & Little Anitas.
    I think you will like NM it is very beautiful & spiritual. As for mass maybe the Cathedral in Old Town, it is an old church but so beautiful
    Or maybe Risen Savior or The Newman Center on the University Campus. I will pray you enjoy NM. As I do.

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  51. You have all rights to be angry, and grieving. You have veen through a lot. I don't know how I would have done.
    Your love for Tripp will never end, but your heart is also full of love for your family and friends. The ones closed to you understand. They others try to. All care for you. And want to help you. They know you are devastated, and they'll understand if you are negative. You have the luck to have them around, so let them step in and try to releve a litthe bit of your pain.
    Good that you see a counselor.
    You are a very brave woman.

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  52. I lost my baby girl Chloe a month ago today to JEB... I feel the same way you do in most things you are feeling, Chloe was 3 months and 20 days when she passed away... I have this bear...well its not my bear, but my husbands, he got it about 7 years ago when he was hit by a semi and in a coma for 10 days and the drs gave him no hope... I took this bear and I put one of Chloe's shirts on this bear.... I sleep with this bear, I hold it when I watch tv, when Im reading, or on the computer... I dont take the bear out in public or even out of my room, because this bear, its my comfort. my private space to grieve. I hold this bear and hug this bear when I cry and when I am in that deep sadness.... if you haven't already or have its something that has really helped me grieve. I put almost all her things in storage, besides just a medium sized box... I don't look in it very offten because I know it makes me more sad. As painful as dealing what we are going though is... we are not the only ones, and one day, we will wake up and be "Okay" Read your Bible sister... that is where all your strength and comfort will come from ( but I am sure you already know that :) )

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    1. Dear Megan
      I am so sorry for your loss. It is so hard to comprehend what you and Courtney and other mother's are going through. But know that people who don't know you in person are thinking of you daily. x

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  53. oh Courtney
    my heart really aches for you. I think of you every single day, and pray for you and Tripp. You are in my thoughts constantly, and without knowing it, I let you guide my actions and reactions as a mom and a person. I think about what you have to endure, and how wonderful and amazing you are and then I try to think how you would react in a situation and guide me. That is a huge cross you have to bear,and it is unfair and you should be able to cry and mourn any way you like. Just know that you have inspired us, brought us closer to God, showed us the way we should be, and we want to be there for you now. Let out your emotions, we don't know you, but you and Tripp are in our hearts. And we love you. I am at a loss of words. I wish there was something I could do to take the pain away. But the only thing I can do is tell you that you are loved and that we are here for you if you want to melt down, scream or cry. Sending love your way, from across the Atlantic
    Christiana

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  54. You are amazing! And in no way a debbie downer! You have inspired so many people including me to be better Courtney! You and Tripp have affected my life in ways I dont even understand! We all love hearing updates on how your doing. im glad you have found a counsler to talk to I know she will help. You had to be strong for so long Courtney. I cant tell you how amazing you truly are. God has big plans for you. I cant wait to see what he has instore. Just look at what you have done for so many people, a community, EB! We all love you so much! We are all here if you need anything! All you do is say the word an we WILL be there! :)
    Love,hugs, and prayers always,
    Ashlee

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  55. I found a quote the other day that said "If you were given this life, you're strong enough to live it" And this quote came to my mind as I started reading your post and I believe that God has a very special plan for you. He lets us go through trials in our life to make us stronger, and I do believe that classifies you as a might strong lady!!! I personally don't fully understand the amount of loss you are going through, I am only 19, and have no children of my own, but I do know you are going through so much right now! And I put myself in your shoes for a moment and I can't imagine even the half of it I'm sure! But I am praying for you! I pray that you find comfort and peace! I heard a preacher not to long ago talking about faith and it's the substance of things hoped for (Hebrew 11:1) And that is what come to mind when I read the part about you being true to people. When someone ask how you are doing, instead of feeling guilty for saying good, look at it in faith that soon you will be good. Because to more positive you see in things the easier it is to come out of negative. Don't get me wrong you have no reason to just jump up and be happy, the whole world should know that!! No one should expect you to be either. In my opinion, you have all the right in the world to me upset and at a loss. When the tears come, let them fall. When the words come, speak them as loud as you please! :) Just take your time, you don't have to rush into being great and fantastic. Find where you are suppose be, learn what need to know, and be the person you were meant to be. And I promise everything will be alright, because with God all things are possible! And He will never fail you! I want you to know I really look up to you because of the strong person you already are and I know you have been through so much more in 3 years than I ever have my entire 19. I'm praying for you and I want you to know that through all the people in your life whether it be your family, friends, people who post on here, I'm sure you get tons of letters and emails and whatever else. There are so many people that love and care for you and want you to be happy, but understand you need time to recuperate! Keep your head high, and I hope this helps at least a little! :)

    With love and care,
    ~Shelby! :)

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  56. I don't think anyone expects you to be anything but heartbroken. I pray that the counselor will help you find peace and healing, even though a piece of you will always be missing. May God bless and hold you!

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  57. Courtney,
    I can not even begin to imagine the pain you are feeling with the loss of your son, even though I came so close to knowing this pain myself. My son is not so far in age from your little one and at 6 months he had open heart surgery. My son is now 2 and doing very well at the moment, but I feel such immense guilt whenever I learn of another child in pain, or another mother has lost their baby. I find myself questioning God. How? Why? These children, why must they suffer?!! And then I read your blog. After all that you have been through, you still thank the Lord and I find that so hard, but I think you are right when you say there is something bigger than us that God has planned. Which you have reminded all of your readers again and again. I pray a lot more now. I give a lot more. I try to be more understanding and I am very thankful and I think of you and your little Tripp and the impact the two of you have made towards, not only research for this disease but reconnecting people, like myself, with God. You are not a "Debbie Downer" you are an amazing example of what God must have had in mind for the perfect human being. A caring, thoughtful, giving person who has spread the Lord's word even after all you have been through. I pray that time will help heal your wounds. That in time, the stories of Tripp you tell will bring laughter rather than tears and I hope you find some peace and happiness.
    God Bless

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  58. In tears now all I can think to say is I'm so sorry. EB sucks!!! I wish I could help take away even a bit of your pain :( I Love you Tripp send your mama some love from up there.

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  59. Oh Courtney, my heart aches for you you're right no mama should ever have to pick a headstone for their child x The photos you have posted are just beautiful thank you for sharing them. I wish you well in your sessions with the counsellor and hope that it gives you an outlet for your anger and your tears. Please use your blog to post your thoughts too as you are right sometimes its easier to type them onto a computer screen rather than say it outloud but it means that those close to you can read how you are feeling when you cant say it. Look after yourself Courtney x

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  60. Courtney,
    Thank you for being so REAL. I look forward to your posts because I have come to love you and Tripp through your blog. I feel honored to "read" your heart and follow your journey. Never feel you "SHOULD" do anything - there is no right way to grieve and move through this incredible pain you are feeling. Allow yourself time, space, and GRACE. So glad you were able to find a counselor you can trust and work with. I know this May (and pretty much every May after) will be so hard for you. I will pray that God will hug you a little tighter, shine on you a little brighter, and speak to you a little louder. May you know how much you are loved and prayed for.

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  61. Do what you want to do, say what you want to say... stop even for a moment thinking about others, us - readers of your blog, people you meet on the street. Think about yourself, your feelings, your emotions because it's YOU! If you want to cry, just cry! If you want to scream, scream as loudly as you can!Take off your mask because Tripp loves you so much and know you without it, without this mask!!!
    Now You are important! Not us! Tripp still lives in YOU! That's why you must be yourself!
    I am writing to you from very far away - Poland. Even here there is someone who thinks about you! And I don't care if you're sad, angry or something else because it's just emotions, we all have them, it's normal! What I care for is YOU! Because you are sooooo amazing, sooo brave (if you are tired of being brave so don't be! but remeber that we will still thinking that you are! ;-) ), sooo incredible that even if you are sad or ""debbie downer" it doesn't change my feeling for you or my opinion of you!!!

    I would like to send you a free mind and peace... but I can't... I just can promise you that I keep thinking and praying about you!

    Greetings from Poland
    Marta

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  62. it is ok for you to be as much of a debbie downer as you please. It is ok to feel like you do, and i don't think any of us readers or your family and friends will care, we are here to listen and help, as we've done all the while Tripp was with us. You have a right to be angry, wouldn't we all be? you have a right to cry, to scream, to be silent, anything that makes you feel better until you heal.
    Lots of love dear courtney

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  63. Anger is a natural stage if grief. Please just do whatever You feel you need to do and take care of You. We do not judge you here. We all are in your corner and would love to fight the pain for you. We pray for peace to settle upon you, but in the meantime, you just need to take each day as it comes and let it out when you need to. Glad you are seeing a counselor. It may be a blessing. May the Holy Spirit be upon you and the grace of God bring you peace. You are always an inspiration.

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  64. Cry your sweet eyes out, my friend. It's not fair what you are going through. You are an amazing mother, and Tripp is so lucky to have a mother like you. All of us are patiently waiting to hear when you are able to make the next step in your life, be it 3 months or 3 years. I can't wait to hear when you are able to think of Tripp and just smile and laugh and not have heartache. I pray that you will find something in your life to make you want to get up in the morning again. You are way too special, honest, beautiful, caring, articulate and loving to have your life end with this tragedy. Be patient with yourself, life is a marathon not a race my friend.

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  65. Cry your sweet eyes out, my friend. It's not fair what you are going through. You are an amazing mother, and Tripp is so lucky to have a mother like you. All of us are patiently waiting to hear when you are able to make the next step in your life, be it 3 months or 3 years. I can't wait to hear when you are able to think of Tripp and just smile and laugh and not have heartache. I pray that you will find something in your life to make you want to get up in the morning again. You are way too special, honest, beautiful, caring, articulate and loving to have your life end with this tragedy. Be patient with yourself, life is a marathon not a race my friend.

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  66. Cry your sweet eyes out, my friend. It's not fair what you are going through. You are an amazing mother, and Tripp is so lucky to have a mother like you. All of us are patiently waiting to hear when you are able to make the next step in your life, be it 3 months or 3 years. I can't wait to hear when you are able to think of Tripp and just smile and laugh and not have heartache. I pray that you will find something in your life to make you want to get up in the morning again. You are way too special, honest, beautiful, caring, articulate and loving to have your life end with this tragedy. Be patient with yourself, life is a marathon not a race my friend.

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  67. Cry your sweet eyes out, my friend. It's not fair what you are going through. You are an amazing mother, and Tripp is so lucky to have a mother like you. All of us are patiently waiting to hear when you are able to make the next step in your life, be it 3 months or 3 years. I can't wait to hear when you are able to think of Tripp and just smile and laugh and not have heartache. I pray that you will find something in your life to make you want to get up in the morning again. You are way too special, honest, beautiful, caring, articulate and loving to have your life end with this tragedy. Be patient with yourself, life is a marathon not a race my friend.

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  68. God bless you! First of all, he was born on my birthday..and my son's. I can't imagine your pain, though I do know what that type of loss does to you, as I recently and tragically lost my mom. You HAVE to eventually talk. Everyone expects it, we don't expect your to put on an act..Feel, cry and laugh on your own terms. I still have not come to terms, maybe never will, with my loss, and it is a year later. How can you? You just have to find your own way to go on.

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  69. You have been so strong for so long and now it's time to let those who love you carry your weight for a little while. You take all the time you need to work on yourself. Don't worry about the things you think you "should " be doing, like tending to this blog. Your followers will still be here for you when you need to vent or to share.

    Don't feel like you have to live up to anyone's expectations. You suffered an incredible loss and that will take time to heal, if it ever truly does. One of the hardest things, as a mom, is defining yourself only as a Mom and you are so much more. To your family, your friends and the community surrounding you. To us.

    I am always in awe of your strength to share this experience and the tragedy of losing the love of your life. I hope you know that there are a large number of people who don't even know you and love you for sharing Tripp with us. What an amazing little soul to have walked in this world.

    Counseling is a great idea and it took real guts to walk into her office after losing your baby only a few months ago. Stick it with it, even during the hard times. Tripp would be so proud of you. And don't feel like you have to be strong for everyone else. If you need to cry, you cry. If you want to throw a tantrum, go right ahead. You have earned those feelings.

    Courtney, I don't think you know what a gift you are to all of us. Everytime I read a post of yours I hug my son (who is 15mo) and know that there is no greater love than that of a mother for her child.

    The picture of you and Tripp sleeping was my favorite. Such a sweet sweet little boy. <3

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    1. Courtney, I look daily for you to post, I miss your blogging, Pleas never feel like we do not want to hear what you have to say. I miss knowing you are okay.

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  70. Pour out your heart Courtney! This will help you to get through those really hard times. You have a way with words :) Praying for you always.

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  71. You are most certainly NOT a debbie downer. You always have blogged from your heart~ why stop now? You still amaze me Courtney. I am praying for you everyday and I was thrilled to see you had posted, for I was worried about you as well. Enjoy being with your sister~ I am sure she needs to be with you right now too. How helpless she must feel being so far from you. Much love and hugs~<3
    Diana a.k.a. Meme

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  72. I've been thinking about you a lot, Courtney. I know the grief I'm going through is not quite the same, but I wrote a post on grief-how to help someone grieve- it may help your feelings/wall feel justified.

    http://heplerfamily.blogspot.com/2012/03/how-to-help-someone-grieve.html

    Like you said, I've learned that there are no sequential grief steps...it's up/down/back/forth...and it never goes away completely. It's just a terrible burden to bear. I pray that God allows me to carry some of your burden for you, so that you might feel a little bit of peace..even for just a moment.

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  73. I dont think this is a debbie downer post. I like knowing how you are doing and being able to still hear from you every now and then. I think about Tripp often. I still am praying for your healing and peace.

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  74. All of us who follow your blog will never tire of you being as honest and open as you feel comfortable with, Courtney. I know for me, it helps me know how to pray for you. This past week you and Tripp have been (even more so than usual!) on my heart, and I felt the need to watch some Tripp videos. My heart was just aching for you. By reading your blog, I know better how to pray for you. I also think your willingness to share your grief is probably helpful to other hurting parents out there-- your writing is such a God-given gift, even in the midst of your heartache.

    I hope you have a wonderful visit with your sister here in Albuquerque. It makes my heart happy to know that you'll get to experience some Southwest beauty in our city and be with your family. I'll be wearing my Team Tripp shirt and praying you have a wonderful visit, even during such hard days.

    Thank you for sharing your heart. My faith is forever stronger through you. Hold tight to your faith as Jesus holds you and weeps with you.

    Much love and peace,
    Devon

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  75. I am glad that you posted, and just so you know. Opening up on your blog is apart of your grieving process!!!! You may not see it now but when you go back and look you will see....life throws us curves and rocks and obstacles that we just never will understand. You and Tripp opened the eyes of millions....just by talking and educating the world on what you are going through and what your child endured every day....Blogging may be your center, I cant imagine what it is like to fill your shoes!!! Honestly, I can imagine it is the hardest thing to ever to do, and the crazy part you need to remind yourself is that YOU DID IT!!! You loved your child more than some mothers can love in an entire lifetime, you kept him safe, you helped and nurtured him, you loved and gave to him the best 2 yrs and 8 months of his life!!! In that you are a hero. It is okay to be angry and have a wall up. It is ot your jon to announce to the world and wear a tshirt that says Im hurting, becuase anyone that ask's how you are doing? Already knows the answer. The greiving process is always going to be there, time doesnt heal, it just gets easier. The questions of why will always stay around, but you will find that over time, your a little more acceptable of the answer. Your little guy and his strong Mommy and Grandmother left a dent on the world. I never heard of EB until I heard about it on the Today Show.... I immediately checked into your blog, that is inspirational and touching in so many ways. As far as things to help you through this time...I feel like the hardest part for you right now is living for you becuase as any mother in your shoes, you neglected you to help your baby!!! It is hard to figure out where to leave off and where to move forward too. This is all normal, you can and will do it and time will allow you to pull up your gard, and scream at the top of your lungs that you are hurt!!!! It is okay you are aloud to be bruised.....Just know that most of the people who know your story help carry your pain, we hurt with you because you left such a impression and desire to educate ourselves more about EB and the families suffering through this, you and a Blessing and you dont even know it, and your child is the same....Tripp is an angel, watching over you...thanking you for being his Mommy..Love Katie chin up girl you got this :) xoxoxoxoxox RIP Tripp

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  76. Sweet, wonderful Courtney...please do not apologize for your feelings. This is YOUR outlet so don't worry about us, the readers. We love you no matter what you are going through, the emotions you are battling, on good days and bad days. We are here WITH you, praying for your peace and comfort now.

    As always, sending hugs and love your way-
    Mary

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  77. Aahh, Courtney, this grief thing.....well....to put it simply, it sucks. Your grief has been a long time in coming. Death is unfair to us parents and life itself was unfair to Tripp. I am so grateful that you found a counselor. I hope that you find, as I have, that a counselor is a safe place to express all that your heart just cannot find words for. Keep writing, whether publicly or privately, it is an excellent tool of expression. I wish with everything in me that I could tell you that the hurting gets better, but I cannot. I've been 2.5 years without my sweet Laynee and my arms continue to throb for her. We have now been without her for longer than we held her and I just cannot wrap my brain around not seeing her again on this earth. My longing for heaven is great, someday we will see our little ones again. Blessings and prayers for you, dear Courtney.

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  78. Ok, honestly, I think "letting it out" is completely healthy! Please, tell us how you are feeling so we can support you. The good, bad and ugly are all parts of life and those who love you will not have a problem hearing about it. It is not being a "debbie downer" it is being human after the loss of a child. Get ANGRY. We are all angry too! Obviously our feelings are not comparable to your Courtney, but we are angry and sad for you and your family. The fact that you are seeing a therapist shows that you know your limitations. Goodness Courtney, you have held your world up for so long! Time won't heal all wounds, but it will make things easier. Give yourself a break, we will still love and support even when you are sad, angry and down.

    Dawn Thomas

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  79. Courtney, I'm not sure if you've heard of Faith's Lodge, but please check it out as a source of healing. I know several people who have been there and it's nothing short of amazing. http://www.faithslodge.org/
    Have a wonderful trip to New Mexico!

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  80. I am glad to 'hear' from you. Do what feels right to you. It is your healing that matters; not the opinions of others or what you think they may think. You are walking a road that most of us can not even begin to fathom. Make your own way.

    My heart and prayers are with you.

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  81. Sweet, sweet Courtney.......I think that the best way to keep up your blog is to put how you REALLY feel on here. This is YOUR journal. If anyone thinks you are being a "debbie downer" or gets tired of you saying these things, then they can just stop reading it. I could not imagine in a million years how your heart must be broken. I am sure that the hurt will ease some over time, but it will probably always be with you. You are so right about this not being fair, because it ISN'T. You just write how you really feel on here and don't worry about the rest of us. Concentrate on getting YOU to the point that you can function in life as best as you can. Love, hugs, and prayers to you and your family.

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  82. Courtney, I check your blog often. I do hope that you find peace in getting your emotions out. It does help. I can't begin to understand the grief and heartache that you are going through, but I pray that the Lord brings you peace in whatever you choose. Praying for you!

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  83. I read your post before heading out to work this morning. (Something I normally don't do - get on computer before work.) I then get in my car and head to work and this song, which I have never heard before on the station I listen to, came on. I knew right away God was speaking to me and that I had to share it with you! The song is "Angel by your side" by Francesca Battistelli. I have not an ounce of knowledge for what you are going through but I feel God wanted me to share that song with you! And as for the answer to when someone asks you "How are you?" our preacher preached a sermon on that. When asking the question "How are you?" we need to genuinely ask and not just ask in passing. We need to want to know that answer (the real answer) to that question and be prepared to stop and listen! You shouldn’t have to give an answer you don’t want in fear that the person asking doesn’t want to truly know! We continue to pray for you!!!

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  84. Thank you for opening up to us here in the blog world. I am so glad you found someone to talk to. I go to a counselor and love it. I don't love the reasons why I have to go, but being able to "let it go" to someone who won't judge me always makes me feel better. I hope that you will continue to blog. I think all of us who have followed your journey feel connected to you and Tripp. We love you and care for you and are constantly praying for you.

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  85. I lost twin sons 4 years ago...They only lived a few days. So I know a little bit about how you are feeling and some of the things you described are exactly how I felt in the months after they died. Be gentle with yourself. There are so many layers to your grieving process...so many only come with time. I am 4 years out and in a much better place it didn't come easy. It tests everything you know. I think about you often....And please don't feel guilty about not posting!
    ((hugs))

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  86. Lots of love and prayers continuously coming your way Courtney! Thank you for allowing us to be on this journey with you... you have taught me so much about patience and faith. Take you time, and never feel like you need to act a certain way. Grieving is not black and white... <3

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  87. I've been looking for a new post. Your not a debbie downer, you are speaking from your very broken heart, and we understand. My heart aches for you and I have continued and will continue to pray for you! I hope you are able to have a wonderful trip with your mother. God bless!

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  88. I'm so glad you posted again I check every day to see if you've written anything. No apologies needed about your feelings. They are raw and real and you don't have to put on your happy face here. I hate that you, and other mom/dad's that read or post to your blog, have had to go through losing a child. I think it's a great idea to remember Tripp with donations in his name! Keep us posted on your progress with your councelor because I truly hope you can find some sort of true peace about Tripp's life on earth and his eternal life in heaven! I hope one day I can meet him in heaven to tell him how much he affected my life!

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  89. You are in my thoughts and prayers. I just wanted to let you know that my family and I will be participating in the "Jogging for Jonah" 5k in honor and memory of Tripp. Tripp's life touched so many people, and is continuing to touch people all over the world. God bless you! <3

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  90. I think you should blog about whatever is going on in your life, good or bad, EB or not about EB, talk about Tripp if it makes you happy or talk about trivial stuff if you are going through a rough patch and want to focus on not so serious stuff. Losing a child is a lot to deal with and its ok to let other people know that it SUCKS, we get that and we'd be more concerned if you didn't feel that way. And don't feel like you always have to blog about Tripp or EB stuff, we know that if you are posting about a weekend out of town or even some really good ice cream that we won't think that you are moving on, forgetting about Tripp, and we know its ok to do regular stuff AND be sad about Tripp at the same time. Hugs to you girl, you've been through a lot and I hope you have a great time with your mom on Mother's Day. She's been a big support to you, you are lucky you have such a good mom :)

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  91. A "debbie downer" you most certainly are not. You are grieving, and you being "a broken record" is part of that process. I think part of us who went on this journey with you and Tripp want to hear it all, the good times, the hard times, the happy times, the most remembered times, and the lonely times. Its the only way we feel we are helping, by just "listening" behind our computer screens. We can't all put our arms around you, but we can be the shoulder you lean on. We can be the outlet for breaking down that wall. You are stronger than you know, but even the strongest cry and get angry. Do not for a second feel like you have to prove your strength to anyone, or that by being honest you are burdening anyone. We love you more than you know!

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  92. I would love to hear about your experience with Anton and how it felt to be loving on some one who you knew needed it so much. I prayed and prayed that you & patrice would be able to go to the hospital for the Delgado family. what an answer to prayer!

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  93. I would LOVE to hear about your time caring for Anton and the Delgado family. I prayed and prayed that you & patrice would be able to go and love on that precious boy.

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  94. your not a debbie downer at all! your real. continue to be so. i pray that i never go through what you have, what you continue to go through. i found your blog when i was pregnant with my daughter, who will be six months soon. when i was pregnant i became fearful of all these things happening that i could have no control over. i would read how well you handled things and knew if i were to have to deal with something like this i would have no where near the grace you have shown. the grace you continue to show. i pray you are able to find your peace. not acceptance. who could accept something such as this? i too have problems with telling people my feelings face to face, exposing the weakest most vulnerable part of myself. that is completely understandable. so as you are able to let people past that wall, pass on that therapeutic advice when your able. i have confidence in your strength and know that day will come for you. prayers and love to you...

    lydia @ the adventures of Mommaloo

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  95. how could anyone yell at you for being a Debbie Downer when you have been such a champion for Tripp for so long?

    When people close to you ask, I would hope they want to know. They see you hurting and they want to help. At very least you could say "I have had better days" and see where it goes. Let them in. It will not dilute the connection you and Tripp have (yes I said have because it will always be there).

    We were here for you then and we are here for you now.

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  96. Dear Courtney,
    I discovered your blog just few weeks ago and I immediately fell in love with your little drummer. I am so sorry for your loss and for all the pain that Tripp had to endure in his brief life.
    Please keep in mind that you were the perfect mom to Tripp and you gave him the best life that a child with EB could have.
    Tripp is now pain-free and still lives in your heart and in many other hearts he touched.
    This is your blog, feel free to express your emotions whenever you need it. We will not get tired of reading.

    Blessing

    Liseli

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  97. Oh Courtney, I wish I could think of something to say that would really make you understand how deeply you have touched me and my family. Really - there is no way to describe it. I am so sorry for the pain you are feeling - I can't even imagine how deeply it must hurt and I don't think there is anything wrong with you posting your feelings. It is not a downer to those of us who have grown to love and care about you and of course your beautiful Angel Tripp. We just want to hear from you no matter what it is you decide to post. You are always in my thoughts and prayers. I will definitely donate money in Tripp's memory. I had posted before that I will never forget his birthday and will think about you and Tripp every year on May 14th. Have a safe trip to visit your sister - sending lots of hugs your way. God Bless you! Gloria from Alexandria, Virginia

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  98. I am so glad you are seeing a therapist to help you find a way to express yourself. You have every right in the entire universe to not be okay. You were so strong for Tripp for so long, and maybe you un-learned how to let your emotions be present in the moment and not push them away so you can keep functioning. You can unlearn that. You need to. I know you can do it. You are very loved, and I hope you know you can call or text me anytime you need an ear, or a hug.

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  99. Courtey, you don't know me. But, God does. Know that it's okay to blog every single day about your sadness, about your anger, about your fears, about your heartbreak. There are hundreds of people who God will put in your path to help you. You are NEVER alone. You are known. You are loved. You are prayed for. You are thought about.

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  100. Courtney, I love your blogs and your strength. you are amazing.. I do not see them as a Debbie Downer I see them as a mom that has lost her whole heart with the loss of such an amazing little boy... You will forever be a inspiration in my life and many others, and Tripp will forever touch people and be my little hero!!...

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  101. My heart goes out to you Courtney. Though I think building a "You and Tripp" wall is the first step toward letting people back in. You need to build that wall up to be able to take it down block by block, to be able to understand all of the different emotions you've stored up. It's not just sadness, anger and frustration that you'll be sharing with your family and the people that love you, once you let them in you'll be able to share the joy that being Tripp's mom gave you and you'll be able to experience the joys that remain in this life. I think as terrible as you're feeling the fact that you're making positive steps to share not just your sorrow but everything you're feeling is the true measure of your strength. Tripp would be very proud of his Mom, not just for how you cared for him while he was here, but for how you're choosing to not forget about the beauty that still remains. I envy your strength, I'm humbled by the love for your son, and I'm grateful for your story. Find peace and know joy, you deserve it and your family deserves you.

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  102. Hi Courtney and Family:

    First, as always, thank you for being so honest with your readers. I had checked your blog several times in the last weeks, so I really appreciate seeing an update. I often think about you and your family.

    I could really relate to you while reading your blog. I am one to always put on a "happy" face too -- even when things are not happy, I think it is easier to say "I am fine" than go into the details. You also mentioned that you busy yourself -- that is another thing I do, but I personally think that is positive thing (in moderation).

    I wonder will you return to nursing? You seem like a NATURAL loving nurse. Or, do you ever think of starting to write a book about your experiences? Your story has touched me very deeply -- for several reasons -- so I am wondering if you writing would be beneficial.

    You mentioned that you are looking for blogging ideas and one that came to mind is occasionally highlighting other children/families living with EB. Before "meeting" Tripp, I had no idea what EB was, through reading your blog, I now have an understanding of what it is and I have told many people about your blog and you have educated us all. Continue to do that -- that is another one of your special, God-given gifts. You can educate and inspire through writing!

    Take good care -- as always, my family thinks and prays for you all often.

    Joanna, Joseph and Jude
    Madison, WI

    PS: You mentioned a trip to NM. I recommend heading to Santa Fe and Taos while you are there. The beauty of that area, surrounded by mountains, I thought is representative of the heavens (wide open spaces, blue skies and majestic beauty).

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  103. We're here because we are fascinated with you, your courage, your story. Your writing style is enticingly to the point and you mystify and mesmerise us with your story.

    It is so foreign to our reality yet our imaginations and empathy let us feel those terrifying glimpses of a beautiful woman who's been swept down a deeply rewarding yet deeply shattering path.

    We all know how the story ends. You will eventually be strong and happy again, but we want to share this foreign journey with you because you are fascinating, strong, and endearing to our hearts. So don't edit out the ending, it's not what your readers want, and it seems it's not what you want either.

    Courage and strength can shine through a blackened heart like yours, and we will definintely find it and love it.

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  104. Hi Courtney, there are so many kind words here that i dont have to say much. I have followed your life with Tripp for a while, but i have never left a comment. But i feel that you need to know now, more than ever, that we care for you. I think about you and Tripp and pray for you often. I cant imagine what youre going through but i know youre one strong mommy and you will find a way to get a little better everyday. My thoughts are with you.

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  105. We're here because we are fascinated with you, your courage, your story. Your writing style is enticingly to the point and you mystify and mesmerise us with your story.

    It is so foreign to our reality yet our imaginations and empathy let us feel those terrifying glimpses of a beautiful woman who's been swept down a deeply rewarding yet deeply shattering path.

    We all know how the story ends. You will eventually be strong and happy again, but we want to share this foreign journey with you because you are fascinating, strong, and endearing to our hearts. So don't edit out the ending, it's not what your readers want, and it seems it's not what you want either.

    Courage and strength can shine through a blackened heart like yours, and we will definintely find it and love it. xo

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  106. You are not a downer at all! You inspire all of us to appreciate what we have, something that can be hard when in the middle of our own heartbreaks.

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  107. I am not the best with words so I'm simply going to say that my heart is aching for you and that I pray for you everyday. Please don't apologize for not keeping up with blogging, you do whatever you need to do and I hope that eventually you are comfortable with letting your emotions out. I have not lost a child so I can't say that I know how you feel but I have lost 2 brothers and IT IS HARD. Everyone knows its hard and it takes months, sometimes years to get to that point where you can say that you are "OK" and actually be telling the truth that you are really OK. There will always be dates, songs, and certain things that remind you of Tripp and all the emotions come right back to you and you know what? Its ok to cry in the middle of Target or the grocery store or driving in your car when you see or hear something that brings Tripp's memory back. There is at least one time a week that I cry because I miss my brothers or I see something that reminds me of them. Tripp will always be with you, that's a huge blessing. He wants his momma to be happy.

    *HUGS*

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  108. There's nothing more I can really say than what others have already said. Just know that it's always so good to hear how you are doing.....no matter if it's good or bad. It's good to know that you are still there with us....we love you, Courtney. No matter what anybody says, all you really want is Tripp. Nothing else matters. We all want you to feel better, we pray night and day for you and your family, we want to connect with you because we are grieving the loss of Tripp as well. As a matter of fact, I feel alone grieving him. My family doesn't understand why I feel so strongly about EB and Tripp because I don't even know you guys. But I go on day by day, feeling the overwhelming sadness that goes along with it. I thank you for all the wonderful pictures and videos you share of Tripp. I really love the first picture you posted of him looking up into your eyes. It must be so hard to look at that. To be able to look into his beautiful brown eyes. It breaks my heart thinking about you suffering through him being away from you. He's so smart and funny. He's so easy to love. In the one picture of you holding him and looking so sad. My heart hurts for you. I wish we lived closer so we could visit. Please post a picture of the headstone when you can. It's going to look great I'm sure. Hope today goes well for you at the meeting with the counselor. I'm sure visiting with your sister will be uplifting to both of your spirits. I've also wondered how your mom and family are doing as well. I think of you guys and pray each and every day, always will. May God Bless You! Sending love all the way from Indiana......

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  109. Please talk about how you really feel and what is in your heart. People should be prepared to get an honest answer when they ask that question. I am so glad that you found a counselor! I know she will help you sort through all the feelings and pain you are experiencing. I don't mind the "debbie downer" postings. This is YOUR blog. YOU can post WHATEVER you want on it. One day your posts will be more upbeat, but for now they are a way to help you deal with the terrible loss you are desperately trying to cope with. You, as always, are in my thoughts and prayers. My son and I still pray for you every night.
    Love always,
    Gina S

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  110. I have been reading your blog for awhile and you are such an inspiration. Please do not feel that you are a 'debbie downer'...you LOST your baby! You are grieving...all of your readers/friends want to support you. Your blog is a good way to let out all the pent up emotions that you have inside you. So happy you have a counselor that you like and feel you can trust with your feelings. God is with you, Courtney! Even when you feel all alone, he is there. He understands our questions and our 'why's' and 'its not fair'. He understands because what he endured on the cross for us wasn't fair either. Praying for you!

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  111. I want to share with you a quote. I know it can not take away the intense pain you feel caused by the absence of your baby, but hopefully it can bring comfort in some way. Remember that you are only away from your child temporarily... think of him as just being in another room that you don't have access to yet, but eventually will!
    " what a wonderful thing is death, really, when all is said and done. It is the great reliever. It is a majestic, quiet passing on from this life to another life, a better life. We go to a place where we will not suffer as we have here, but where we will continue to grow, accumulating knowladge and developing and being useful under the plan of the almighty made possible through the atonement of the son of God". - Gordon B. Hinckley

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  112. Hi Courtney,
    It is ok to vent and I think you should use this blog as a spot to let your feelings out. I know when I see blog posts going up from the people I pray for I pray more often and more specifically. You still need lots of prayer and I am sure all the people reading here feel the same way. We want to release because this is very healthy for you. I am glad you have a counselor, this is a very good step to take and before you just weren't ready for it but now you are. One thing I have been praying for you is for God to continue to guide and direct you, leading you in the direction He wants you to go. Continue to trust in His leading for His ways are perfect.

    Courtney please, as you feel led, let it out and if you repeat yourself, so what. Like I said for me I will know how best to pray for you.

    Praying and lifting you up.
    <><

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  113. No such thing as a "debbie - downer" when you have just lost your child. Please continue to use your blog and us listeners as a tool to help you grieve.

    Would love to know your thoughts and your experience in visiting Anton!

    Praying for you in MN -

    Sarah

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  114. Courtney,
    I'm thankful that very few parents have to experience what you are going through, although I think one parent going through this is one too many. I can't begin to understand your pain, so I won't even pretend. I have grieved over the loss of a loved one, so I guess I have experience with that. I think that grief is an extremely selfish process, there is no right or wrong way, and one of the few times where being selfish is completely okay. I think that giving yourself permission to express your feelings is a great start. If you think that anyone that reads this blog thinks you are being a "debbie downer" then they should stop reading. I don't think that expressing our emotions is being "debbie downer". In my opinion a "debbie downer" is someone who complains about insignificant things. The enormity of your loss warrents expressing yourself anyway you see fit, if that means your write on your blog exactly how you feel, then so be it. I personally find that blogging or writing in a journal to be extremely therapeutic. I don't view someones blog as an arena for options or telling you how or when to do something. I think the fact that you have shared your journey to be an extremely special gift that you have chosen to give your readers. Thank you so much for sharing this gift with us, you have made so many people aware of EB. We, as readers, make a deliberate choice whether or not to read your blog, and we do so becuase we genuinely care about you.

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  115. That's so good that you're seeing a counsellor - just to have someone that you can really open up to and not worry what you're saying and knowing you can be completely honest. Because what you seem to be saying is that when you're replying to family and friends. 'how are you' questions, you're considering them, over you. eg worried about if they'll think you're sounding too sad etc. Everything you write about in this post made perfect sense - and that's so understandable about the unfairness, like even all this energy you're having to put into this part of the grieving process in terms of how you share with other people to me is so unfair, when all you should be having to do at this point is taking your little boy to the park or listening to Elmo singing. And I kind of get being guarded sometimes about answering people's how are you questions because sometimes without meaning to, people can be insensitive in the way that they respond which can cause a little jolt and make you think why you bothered answering in the first place. But then on the other side sometimes talking to friends and loved one's can just give that little bit of weight off the shoulder even if it's just for a short while. I know this is easy for me to say but I don't think you have to justify or apologize or feel like you're being a downer in any way right now- it's easy to gather from your blog and your words that you are doing the best you possibly can be considering the insurmountable heartache you are living with at the moment ( and by 'at the moment' I'm not implying that your heartache is only temporary or will go away, I just mean that right now it's so raw) I really hope for you that your sessions with the counsellor continue to go well and give you even a little bit of peace in your heart.

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  116. I only know you from following your blog, but I am praying for you. I pray that God gives you the strength to grieve, cry, laugh, smile, remember, pray, or just do the daily tasks. This is your blog, so say whatever feels right to you. You were always so honest about what Tripp was going through and that shouldn't stop now. Speak from the heart.

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  117. Oh you are such a strong woman! Keep your head up and know that you have many, many people praying for you.

    I love when bloggers to vlogs. I know many people aren't comfortable with it but it may help you. You never know! And trust me, it seems like you look and sound ridiculous, but nobody except for you realizes it. God bless y'all!

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  118. Wow, what an inspiration you are. I don't even know you, but came across your blog from a post on Facebook. I'm so sorry you are having to deal with the loss of a child. I can't imagine. I lost my dad last year and it was horrible. But, when I get down over petty stupid stuff I try to remember there are people dealing with life's hard circumstances. I pray peace for you and your family. I see Jesus in your post.

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  119. It's so hard to think what my life would be without my little boy. I can't imagine what you're going through. Just know that you have opened my eyes to the blessing that I have, and that I have cried for you. I hope one day you can have peace.
    I've seen a fundraiser where the people did a run online. Let's see if I can explain this. They set up a date for a race day, then people signed up and t-shirts were mailed to them (like a normal fundraising race) but instead of meeting at X city at X time the people that signed up did a run on that day at the time of day that was convenient to them around where they lived. So someone in NYC would be running around NYC and someone in LA would be running in LA. It was a pretty good idea, and a lot of people signed up. I forget what it was for now, but it did help.

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  120. Oh, Courtney, I just love seeing pictures of your little man. I cried the whole time reading your post and with each picture, I only cried harder. He was such a gift to all of us. Thank you so much for being the greatest mommy he could ever have and still does have. It is sunny and glorious outside here in the Midwest today and I looked up to the heavens and felt so reassured. There is an incredible angel looking down on us all. A beautiful angel. His very existence has helped ease much of my doubt about eternity. That is an incredible gift and I don't even know him personally. Thank you for that gift. Hugs to you. <3

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  121. Courtney, I have prayed for you every day for so many months, and I am relieved to read this new entry - glad that you're seeing a counselor and glad that you are being "real" about life just being really, really awful for you right now. I am hoping that your true grieving can begin, though Tripp will always, always be a prt of you. My heart breaks for your family.

    Thank you so very much for sharing your grieving process. And thank you for the link to The Butterfly Fund. Please remember that you are in the hearts and prayers of so, so many.

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  122. Courtney, I'm so happy to read that you found a counselor. That is an important step in taking care of yourself.
    Now that you are torn in pieces because of sorrow and PAIN I want you to know that you are still being lift up in prayers. I'm thankful for being able to follow your blog filled with honest posts, so please feel no need to hide your true feelings.
    I was glad to see those gorgeous pictures of Tripp & you / your mom. Sometimes pictures speak louder than words. I can see the loving bond between Tripp and you: a bond that strong will never die. Tripp was Mr. Lovable. God bless you, amazing Courtney!

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  123. you had to be strong and hold it in for so long to care for and love Tripp....of course you are used to doing that. it's going to take time to learn to let it out. be gentle to yourself! counseling may help you learn how, as will those that are close to you and love you.

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  124. Never, never, never feel like you can't be yourself here! Sad, happy angry, this blog is about you and the amazing little boy of yours. I appreciate your honesty and sometimes it helps to read what you have to say. I lost my first son and it never stops hurting. I just want to give you a big hug. Hang in there, we are all thinking of you and Tripp.

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  125. You are amazing and I want you to know that we are all thinking of you.

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  126. Courtney, I love that you have this blog for an outlet for your feelings. It is good for you to let it out, even if you feel like a broken record. My heart continues to break for you. I miss Tripp even though I never had the honor of meeting him. I cannot imagine feeling it from your side. You are an amazing mom and I will continue to pray for you.

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  127. Dear Courtney
    You have earned the right to shout and cry - it is SOOOO unfair that Tripp had to suffer like this, and your suffering continues. Although you have all of us to pray for you, and a wonderful family, ultimately this is your journey and only you can walk it. If I could help carry you through it I would in a heart beat. But hopefully God will carry you through the hardest parts. Without you and Tripp, I would be half the new mother I am and I am so much more aware of life and those around me now. I fundraise for EB charities and try to educate as many people as I can in my day to day life. And this is all because of you and the way you opened Tripp's and your life to us. Your photos remind me how beautiful he was - I never knew him but I miss him.
    Be kind to yourself and cry when you want to. And if you want to laugh, laugh too - Tripp would want that.
    Love Nathalie in London UK

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  128. Don't ever apologize for anything that you post here, Courtney! We won't get tired of "down" posts or angry posts or anything like that - you need to do this!

    I thought about you last week - was watching Sesame Street with one of the kids, and that Elmo song "Butterfly Friend" came on. What a beautiful song - and what a beautiful, brave boy Tripp was!

    Be angry. Be sad. Share those feelings. Believe in the Lord- He will never forsake you (and I know you know all of this!)

    Love you very much and am constantly praying!

    Laura

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  129. I don't want to express pity because I've received it and the pity just seemed to make it hurt even worse. I would like to encourage you and let you know that I am just one extra person cheering you on from the sidelines.

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  130. It's not fair, it just plain isn't fair.
    I will be honoured to make a donation to the Butterfly Fund for Tripp's 3rd birthday : ).
    I pray for you often dear Courtney. Such beautiful pictures, thank you for sharing.
    ~tracey

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  131. You ARE amazing. Grief is nt easy. Living is not easy, when you have lost someone who you dedicated your whole self and your whole heart to, you fnd you are completely lost. You feel guilt when you have a good day... You find comfort in the normalcy of a bad day.
    When you feel you want to post,we are here. We will always be here. You are always in our thoughts and prayers.

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  132. Courtney, you are an incredibly beautiful person. I'm so glad that you are reaching out for help. I think we all just want to continue supporting you and reading anything that you want to share. You have touched so many people through your struggles and I hope that you know that everyone around you just wants to see you heal and find peace.

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  133. Courtney,
    I want with all my heart for you to be honest with us. I know what it is like to have pain but to hold it inside, not to share with anyone, and it is hard to live that way. Please, share with us, we are here for you.
    Melissa

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  134. You deserve all the debbie downer posts you want. I lost my baby last year and that is what I tell myself. I find some much relief in writing and getting my feelings out there. I decided if people didn't want to hear it they didn't have to read it. :) This is a road no one should have to follow. I am sorry that you do too. You will be in my prayers.

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  135. This is your blog so you should post whatever you feel like. I love how honest you are, and right now, you are feeling terrible, so your posts are a little down. But what would anyone expect?

    I am very happy you found a counselor! It sounds like the first meeting went well and I hope the rest do too.

    Anger is a stage of grief. You should really check out Elizabeth Kubler Ross's On Death and Dying. It is a great book about the process people go through when they find out they are dying, and what the people around them (family, friends) go through. Anger is one of the stages, and it makes sense to be angry about something so unfair.

    Take care of you!

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  136. Courtney, Don't you see, don't you know? God gifted you 'all of us'... these faceless strangers, guardians of your heart, mother's and father's to sit by your side in a place where your thoughts and feelings can flow and where we can listen in the quiet moments in our own lives and hear you... listen to you... absorb where you are at and take you in, in thoughts and prayers... you are not a downer, you are anything but that. You are a remarkable woman that other mother's who are facing the same trials you have faced and continued to face, get to turn to. You are a teacher and have been all along to those of us on the outside looking in.

    We want you to purge your feelings here, in this place. Not because we are voyeurs but because though most of us you have never met, you feel like family to us, in strange and Godly way... you belong to all of us and we belong to you.

    If you need to break, you break, if you need to sob, sob. If a person asks you how you are doing, tell them. The truth. I promise you, they aren't asking because they want a false answer...

    The other day when I was at the gas station, a woman was standing in front of my car... when I got out of my car, she burst into tears... I had never met her before, had no clue who she was, but she ran to me and I immediately took her into my arms. A complete stranger... and she cried and cried and cried... she cried because I live in New England and I am from Oregon. We moved here six years ago and in some crazy rebellion, my husband has refused to change our license plates. Well this woman had just moved here from Oregon and she was so homesick, so heart broken because it is very different on the east coast verses the west coast... it takes some serious adjustments and a back bone to leave your home and readjust to something so entirely different and unfamiliar.

    My point is... we aren't just people... we are spirits on a journey and we need one another. The spirit recognizes this in it's moment of need and the human aspects of who we are, are trumped by that magnificent Spirit God gifted us.

    So if you need to cry... YOU CRY!!! I promise you, God will never place a person in your path that can't take on your pain, your tears and your heart break. Let us hold you, let us be your crutch and turn to your family because I promise you, they already know your heart even if you say nothing at all... let them comfort you.

    Let the good in all of us, fill that void in your life as best we can and for a long time, maybe a lifetime, it might not ever be 'enough'... but we will give to you everything we've got, just to help you walk the rest of the way to your beautiful baby boy, who's waiting for you to fill your destiny too.

    Please forgive me if I have spoken out of turn or said something I should not have. It is not my intention to hurt you, but rather, to comfort you. Livy

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  137. no one here is going to judge your or expect you to put on a happy face. let it out....and if someone doesn't like it? who cares. this is your blog. your way of letting out emotions. your way of remembering your son and working through your grief.

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  138. Courtney,

    First of all, don't ever feel bad about how often you post here! None of us are going anywhere; when you want to write you write and we'll be here. I think about you and Tripp ALL THE TIME; whenever I see Elmo I think of Tripp especially. You have a right to be sad and grieving, and God is still with you, walking with you down that road.

    I think it is wonderful that you are seeing a counselor, and I have confidence that talking to her will help. I also understand what you mean about building a wall and not being totally honest with people, even those who are closest to you, because I am also that way. But I am also learning to be more open with people and not tell anyone I'm fine if I'm not. Personally, I think that if people aren't able to digest an honest answer out of you when they ask how you are, they shouldn't ask the question. And again, I say this from personal experience. What good are people if you can't express your true self to them?

    You are in my prayers always. I love you.

    Sabrina

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  139. The reality is that we don't forget, move on, and have closure, but rather we honor, we remember, and incorporate our deceased children and siblings into our lives in a new way. In fact, keeping memories of your loved one alive in your mind and heart is an important part of your healing journey


    What we have once enjoyed deeply we can never lose. All that we love deeply becomes a part of us


    You give yourself permission to grieve by recognizing the need for grieving. Grieving is the natural way of working through the loss of a love. Grieving is not weakness nor absence of faith. Grieving is as natural as crying when you are hurt, sleeping when you are tired or sneezing when your nose itches. It is nature's way of healing a broken heart

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  140. Courtney, I have been following your story through safe heaven. I just want you to know I am praying for you. I know about those wall's and have put them up my self. I can not imagine the sorrow and pain you have known. You are a wonderful mommy to Trip, your love for him shines! I am and will be praying for you.

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  141. Courtney,

    When I read your post, I feel like I'm reading about myself. We are sisters in this and we have never met. Each time I read your post, I say to myself, I would love to have you as a friend. I wish I had met Tripp.

    Your post are never "debbie downer" or negative or pathetic. They are "real" and they express what Mothers like us feel. My Johnathan went to be with the Lord on February 1, 2003 and I find myself, sometimes, still asking and still full of a range of emotions that include everything from anger to happiness and all that is in between.

    Thank you for sharing with us. Thank you opening your heart to us and giving people like me a chance to continue to feel.

    Beverly

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  142. You owe us, your readers nothing. Not upbeat posts, not regular posts, nothing. We love it when you do post but we don't expect it. You are grieving. Not only Tripp's death but the way his life was. You didn't have time to grieve that when he was with you. Now, you have YEARS to grieve. The pain he lived with. The childhood he and you missed. This grief will always be with you but not this raw. While it IS in the raw stage, we grieve with you, and continue to carry you in prayer. Part of how we carry you, is let your heart dump out on here and we will read it, and weep with you at all that was missed, and pray some more. Hugs to you.

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  143. Oh Courtney. I don't even know you, but my heart aches for you and the hurt you're feeling. I cannot imagine your grief. I haven't checked your blog in a few months, but the Lord prompted me to to think of you and pray for you the other night. And just now I came to your blog because my 1-year old is watching Elmo and it made me think of Tripp :)

    I think it's wonderful that you're seeing a counselor. What a great step! I pray it's a tremendous blessing to you as you heal.

    Be real when it feels right to be real. Let it out. It's ok to be angry, sad. It's ok to also be brave and see the best and God's hand in all things- that's not being fake. I'm sure it's such a mix of legitimate emotions.

    Praying for you!

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  144. You are such an inspiration! (never a "debbie downer")I could not begin to imagine what you are feeling, but always know that you and Tripp, and the love that you have for him, have opened the eyes of so many. I love reading your posts and I pray for you always.

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  145. It is honestly an honor to read about your journey, both with your precious son and your grieving process too. xoxo

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  146. Dear Courtney,

    Thank you for updating your blog! I think of Tripp often and still pray for him and all the other EB angels and children still living this this horrible disease every time I pray. Updating your blog once a month is kinda a lot given what you have been thru! No one will ever consider you a downer! Please continue to tell your true feelings to us...we all know how much you loved Tripp and would expect you to feel that way. I hope you can enjoy your weekend away! Take Care.

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  147. I saw your story on GMA, and my heart went out to you and Tripp. I have followed your blog since.I can not offer you anything other than prayers, and I will do that. Please know that you do not have to put on a brave face, let it all out, and take care of yourself. Love to you and your family :)

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  148. Hi Courtney,
    Here are 2 songs that I think you may like/need right now in this dark time.
    "Safe" by Phil Wickham and

    "I have to Believe" by Rita Springer.

    I pray for you daily and will continue to do so. Thank you for sharing.
    ~Claudia

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  149. I understand what you said above where people ask how you are doing. I'd just answer "fine" cause I'd think they were just being polite & they'd look really uncomfortable when I'd answer honestly. I save honest, more comprehensive answers for those closest to me who I know genuinely want to know.

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  150. I echo what many have shared about accepting what you're feeling at the time and that it's ok to share it. I also feel I've learned a lot about grief from a family friend's blog, started after her son became a victim of suicide: http://rememberingjosh.blogspot.com/. Of course the situation of your losses are very different, but I admire how both of you are able to share your deepest feelings in a way that helps to educate others. This blogger also shares a lot of books, poems, etc. that she's found helpful on her grief journey, so maybe you'd find some comfort in them. Sending you love daily!!!

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  151. I am a hospice social worker and my only advice to you is to keep talking/writing. The only way to heal is to walk through the pain and tell your story over and over again. There is no right or wrong in this. YOUR way is the right one! Praying for you, because I know our God heals. He stores up your tears. He wraps his arms around you. And feels the pain with you.

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  152. Courtney, Your words have me in tears once again because my heart aches for you and your loss. I can not imagine the pain you face every morning when you wake up and the silent ache that you carry throughout your day as you put on that brave front. Let it out, any way you can and anytime you need to. You are stronger than you know but no person can carry this loss without help from others and letting out the pain. I know your pain will never go away and no words any of us can say will ease it for you but read this and know you are not alone. I am not facing anything in my life like your loss, the loses I have had all have been adults and although it hurts I can not imagine what losing your child feels like, but your blog has helped me find courage to face some things in my life I've been afraid to face. I have come to your blog often to read your words and see Tripp's happy face to gain my own sense of strength. You and Tripp both have touched so many lives and there is a silent network of support out there that you have gained from this blog. We are all here to lift you up and listen when you just need to get the words out, even if it's the same words over and over. Vent, cry, remember, and share with us....we're here for you - Heather

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  153. I miss TRIPP SO MUCH! I miss hearing about him. I miss seeing videos of him "fussin" you. So unfair - EB sucks ( and I never use that word). Our wed night bible study topic was...life can only make sense when viewed through eternal perspective lenses. Deep thought to wrap your severely wounded heart around - but in the midst of your sadness, emptiness, anger, questioning God (which He knows that we do at times), guilt for questioning God, frustration..., never lose sight of the fact that in His time and through His grace, (with Christ as your Lord) one day with Jesus leading the way you will have that glorious reunion with Tripp that you so long for right now. And God I hope I am there to witness it! Enough of my preaching. Take care of yourself Courtney. Will keep praying for your heart to heal ( a lifelong process). Love you. Kelley in B.R.

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  154. Dear Courtney...I can only repeat what so many hae already expressed: Do whatever YOU fell like doing. And don't worry about what anybody else might think.
    It is your life and this is your blog.
    Whenever I find some time I read through some randomly chosen passages of your blog. I just wish I could help you somehow. Love and prayers from Germany.

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  155. Dear Courtney, you are not a debbie downer, these are people who constantly complain about everything and are always dissatisfied with life even when everything is so perfect. You just had to trust your precious Baby in God's arms, your hearth is shattered in endless pieces and as the shock is wearing off, you are starting to feel the reality more and more. You have all the rights to feel devastated, desperate, angry, sad, furious and in thousands other manners. There are no words to designate a parent who loses his child, it is just so unnatural. And you went through so many emotions! The beautiful b&w picture of you hugging gently and protectively Tripp on your lap and wrapping him with your motherly regard full of so much love, concern and fear for the future speaks much more than any word... Do not feel guilty for being angry or for thinking that this is so unfair. I felt so angry that the whole wide world was going on like nothing has ever happened. I found myself to a point where I was even angry even at God, questioning Him why he let this happen to my baby and to any other baby. I still do not have an answer because as our priest said God has a plan that will unfold to us very slowly. But He never leaves us alone and I know that He is always at our side, in the darkest moments and your Angel is hugging you as well. Do not feel bad for swallowing hard when you see other little boys with dark hair and dark eyes around. You know you do not hate them, but it is just so painful to see them as it reminds you of Tripp so much and it makes you dream about the "if only". You will be surprised but in years to come you might even find yourself getting particularly attached to those resembling him more. This is what happened to me as God transformed my pain. I am glad you found a counsellor that suits you from the beginning. In my case I was not too happy at the beginning mostly because I was too impatient to have answers she could not give me, but over time I can see that she has helped me living my new life. It is not easy to communicate feelings face-to-face, but do not be afraid to be honest. Your family and closest people are there for you. We are there for you and we all love you the way you are with your strengths and weaknesses. Remember that your mother is also suffering both for Tripp and for you. You know better than anybody else what it means to see your child suffer. Give yourself time, but try to let her slowly get into your wall; you will help her as well. As far as other people are concerned, my personal view is that if somebody asks you sincerely how you feel, s/he should be prepared also to your answer. It is true, it can be difficult for them and for you, there will be awkward silences and some might try to change subject or will have hurtful comments without meaning to be bad. But first of all you owe to yourself and to your right to feel terrible an honest answer. And secondly by being honest you will educate them. Very often people do not know how to handle somebody else's pain mostly because they never had to deal with it. By opening up you will make them think and learn a new lesson and over time they will have a deeper sensitiveness in life. Your initiative for Tripp's birthday is so beautiful… I will be honoured to donate to the Butterly Fund in Tripp's honour. Thank you also for the pictures. They are so beautiful and such a testimony of the unique bond and unconditional love between you and Tripp. As you asked for ideas for your blog I would be interested in knowing more about Tripp's first months, before you started blogging. But please feel free to blog at your own pace. We are there for you and we understand if and when you do not feel to write. Have a safe trip to Albuquerque. Tripp will accompany you in your hearth and will look over you. We miss you sweetest little heaven's drummer boy. Love,Talia

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  156. Courtney,

    It is very good that you are seeing a counselor. Just keep in mind that every counselor is very different. Take the good she recommends and ignore what you disagree with.

    Stay close to Jesus; through Mass, prayer, spiritual reading, and loving your family and friends.

    You are a very good person Courtney. Just allow yourself to grieve and don't over-analyze yourself. Just live and be. God and your parents did a good job making you. Trust yourself and the human nature God has given you.

    I can't believe you and your mother are coming to Albuquerque. My family would love to meet you and your mom.

    Benjamin

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  157. I just want to say that may be the most beautiful headstone I have ever seen. You did an amazing job and captured your son beautifully. Prayers for you on your continued journey.

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  158. Great move with the therapist, Courtney. I hope that she will help resolve some of that anger for you; it is part of the process. I remember feeling the same when my step-father died. I didn't even know that I would feel that way, but I did for quite a while. This is a difficult journey you are on ... I feel for you! Stay strong in the Lord (turn to the word for comfort and clarity) and take care of you!

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  159. Dear Courtney,
    I dont think that there is anything I can say that has not already been said. I think that I can speak for everyone on here when I say that if we could, we would each take an ounce of your pain away. I would take it all away if I could. You are an inspiration to so many mothers out there, for sure to me. I hope that the days ahead come with some comfort. I think that it is great that you and your mom are going to see your sister. You always talk so fondly of your sister, and I can definately feel the love every time you write/blog about her. I think that seeing her will help you get through the very tough times you have coming up. I also agree with so many others that this is your blog, you should write about what ever is in your heart, weather it be happiness, saddness or even anger! Let it all out. We are all here to listen! I still pray for you and Tripp every day!
    HUGS!
    Chrissy (chicago)

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  160. You aren't exactly a Debbie Downer that's for sure. We're going through one of our toughest times with our daughter who has RDEB and I'm particularly feeling sorry for my lot in life and the discomfort and pain of our child right now. So from one parent suffering EB to another - LET IT OUT!!! It's working for me (kind of).
    Cheers
    Ryan

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  161. Hi Courtney--

    I have never commented before and I don't even know if you will get to read this b/c there are so many comments.

    I just want to tell you that- please do not worry about being a "Debbie Downer" on your own blog! You are wonderful. You are grieving. You are slowly healing. You are human. This is your space... say what you need to say. I, for one, would love for you to hash out what ever parts of your grief that you are comfortable w/ on your blog. It is healing and therapeutic for you and others can learn from your journey. I am praying for you and would love to hear any part of your ups and downs that you would like to share.

    I too am grieving for the loss of a son. I too said something similar on my blog- apologizing for being a downer. My commenters were very supportive and told me just to continue to share what was on my heart. I am trying to do that in the best way I can and I encourage you to do that--- just share your heart. You have done that throughout this blog and you do it so well.

    Much love and peace be with you,
    Sarah

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  162. I love the pictures on this post. He is so sweet. It's been nearly two years since we lost our daughter, and I still struggle watching other children her age at times. It's hard. Hang in there. I'm glad you are meeting with a counselor, i was so hesitant to go at first, but it really did help. Hang in there, over time you learn how to "adjust" to this new way of life, the tears still come, but the smiles are present as well.

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  163. Courtney, you are doing the best you can and you can not make posting on your blog a priority in your life right now (even though we love reading your posts). We are grieving with you, through every post, every picture, every tear you shed there are many others crying along with you. Tripp is special, he will always be special. Hopefully you find comfort in friends and family. Believe me that lots of us will be thinking of you this Mother's Day. Tripp will be hoping you have a beautiful day. You will always be a mother, in fact you are the selfless, compassionate, strong mother I wish I could be. For Tripp's 3rd birthday (because in my mind Tripp will grow up and become a rambunctious 3yo sassing his mama and breaking hearts) I think you should take time to celebrate the life he had here with you and the life he is leading with Jesus. His physical life was with you but his neverending life with Jesus has only just begun. One day you will get your wish and be reunited with your sweet drummer boy but for now you need to live each day as he would want you to live... bittersweet happiness. Do all the things you wanted for him. I honestly believe the people who leave us never wish us to be miserable even though we will have to grieve and feel the sorrow and emptiness they left behind. My wish for you is to smile on Mother's Day and smile on Tripp's 3rd birthday, knowing your sweet angel is smiling down on you waiting for you to smile back. Many hugs and how I wish I could give you a teary-eyed embrace to let you feel a little of the love Tripp has made me feel (oh, who am I kidding, if I met you I'd be bawling as I hugged you).

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  164. Hi Courtney,
    I want to let you know that I am praying for you and your family. I cannot imagine how difficult and painful these past 3 months have been! But keep blogging and talking about it. You are entitled to however many downer posts you want! We will be here to listen.
    Keeping you in my prayers,
    Carrie in SC

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  165. I would be honored to make a donation in Tripp's name and in honor of his 3rd birthday! Beautiful pics of you and that beautiful little boy. The one of the two of you sleeping is so precious! Take care c
    Courtney and may God's peace be with you!

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  166. You show great strength. Continue to write about whatever feels right for you. I hope it helps you to heal.

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  167. Courtney,

    You remain in my prayers. I cannot imagine your grief. Even though we all know that Tripp is in a place free of pain, it is painful not to have him here physically. For that, time will help with. I'm sure the headstone is amazing and a great tribute to Tripp. If you have time, I'd love to hear what you thought about the blanket I made with Tripp's picture. I hope at some point, it brings you comfort. HUGS!

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  168. Dear Courtney, you are not a debbie downer, these are people who constantly complain about everything and are always dissatisfied with life even when everything is so perfect. You just had to trust your precious Baby in God's arms, your hearth is shattered in endless pieces and as the shock is wearing off, you are starting to feel the reality more and more. You have all the rights to feel devastated, desperate, angry, sad, furious and in thousands other manners. There are no words to designate a parent who loses his child, it is just so unnatural. And you went through so many emotions! The beautiful b&w picture of you hugging gently and protectively Tripp on your lap and wrapping him with your motherly regard full of so much love, concern and fear for the future speaks much more than any word... Do not feel guilty for being angry or for thinking that this is so unfair. I felt so angry that the whole wide world was going on like nothing has ever happened. I found myself to a point where I was even angry even at God, questioning Him why he let this happen to my baby and to any other baby. I still do not have an answer because as our priest said God has a plan that will unfold to us very slowly. But He never leaves us alone and I know that He is always at our side, in the darkest moments and your Angel is hugging you as well. Do not feel bad for swallowing hard when you see other little boys with dark hair and dark eyes around. You know you do not hate them, but it is just so painful to see them as it reminds you of Tripp so much and it makes you dream about the "if only". You will be surprised but in years to come you might even find yourself getting particularly attached to those resembling him more. This is what happened to me as God transformed my pain. I am glad you found a counsellor that suits you from the beginning. In my case I was not too happy at the beginning mostly because I was too impatient to have answers she could not give me, but over time I can see that she has helped me living my new life. It is not easy to communicate feelings face-to-face, but do not be afraid to be honest. Your family and closest people are there for you. We are there for you and we all love you the way you are with your strengths and weaknesses. Remember that your mother is also suffering both for Tripp and for you. You know better than anybody else what it means to see your child suffer. Give yourself time, but try to let her slowly get into your wall; you will help her as well. As far as other people are concerned, my personal view is that if somebody asks you sincerely how you feel, s/he should be prepared also to your answer. It is true, it can be difficult for them and for you, there will be awkward silences and some might try to change subject or will have hurtful comments without meaning to be bad. But first of all you owe to yourself and to your right to feel terrible an honest answer. And secondly by being honest you will educate them. Very often people do not know how to handle somebody else's pain mostly because they never had to deal with it. By opening up you will make them think and learn a new lesson and over time they will have a deeper sensitiveness in life. Your initiative for Tripp's birthday is so beautiful… I will be honoured to donate to the Butterly Fund in Tripp's honour. Thank you also for the pictures. They are so beautiful and such a testimony of the unique bond and unconditional love between you and Tripp. As you asked for ideas for your blog I would be interested in knowing more about Tripp's first months, before you started blogging. But please feel free to blog at your own pace. We are there for you and we understand if and when you do not feel to write. Have a safe trip to Albuquerque. Tripp will accompany you in your hearth and will look over you. We miss you sweetest little heaven's drummer boy. Love,Talia

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  169. thanks for sharing with us, please don't stop

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  170. http://averycan.blogspot.com/2012/04/take-me-out-to-ballgame.html

    I have never commented before but a friend send me this blog and it immediately made me think of you. I thought you could probably relate to the mom, and maybe could reach out to her. Blessings to you and yours.

    Suzanne, NC

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  171. Courtney, you are an amazing woman with powerful words. I admire you for sharing your feelings. You, Tripp and your family are in my prayers.

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  172. I think the counselor is a great move. Someone who hasn't been directly involved. The comfort of those four walls were anything can be said and their are no feelings to hurt. Were you can process the whirlwind of emotions that I'm sure you are feeling. Just know that I will continue to follow your blog whenever you feel like writing. Thinking and praying for you often.
    LeAnn Turner

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  173. First off, I want to say you're a amazing woman. I have been following you since Tripp's passing, and it saddens my heart that you and him both had to go through this. But I wanted to bring something to your attention that I just found on facebook. One of my friends posted a picture and I thought it looked like i've seen it before. She found it on another page, and shared it knowing nothing about you or your son. But its a picture of your son, and this so called person is getting people to like it, saying with every share there will be 1 dollar donated to the family cause they couldn't pay the bills. I figured I would let you know.

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  174. Dear Courtney,

    You are just a precious soul. Your strength and dignity amaze me. I cannot comprehend your pain. I wish it wasn't so. Please remember if you had gone on to be with the Lord you would want Tripp to live life with BOLDNESS in your honor. Give yourself the greatest gift you can and choose to live YOUR life with BOLDNESS in Tripps honor! He really wants that for you just as you would want that for him. God bless you!

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  175. Sweet Courtney, you don't owe anything to us. We do miss your blog posts, but I am sure all your readers understand. We don't expect you to be happy or even close... I'll pray for you, that breaking that wall down helps you carry your sorrow. It must be so heavy. I know you have people around that are close to you and want to be there for you. I hope you'll let them cry with you - it might make you feel a little better. It's good to hear you say that you are "blessed," because that is a truth that you should hold onto. And always remind yourself that this life on earth is temporary, and you will see your baby again. From one mom to another, God bless you.

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  176. Court, I wish that any tear we shed in loving memory of Tripp, or in sympathetic love for you would be subtracted from the tears you must shed until you reach your peace. If only that could be reality, you wouldn't have had to shed nary a tear after you set your little one free, to soar the Heavens...for we have all come to love both of you so, that I guarantee we would build a stairway to Heaven just for you, only if we could. Praying for you to find peace, in anyway you can. You do whatever you need, in order to get there. It won't be a sprint, but a marathon. But, I gather you've got all the endurance you could ever need! Love, another Louisiana Mama/Nurse

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  177. Hi Courtney,
    I'm one of your biggest fans and actually came to the funeral but I had my two rowdy kids with me so I didn't get to meet you and hug you and have a meltdown on your shoulder like I wanted to :) Anyways, I write a small blog and I wrote a post about trip yesterday that I wanted to share with you. Hope you don't mind we writing about your son, but his life meant so much to me. Praying for peace. http://poopsandpoodles.blogspot.com/2012/05/on-suffering-for-tripp-roth.html

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  178. Talk, Write, Cry, repeat yourself over and over and over again! You have a world of support, we all love you & Tripp and know that he brough US to bigger and better places.
    I talk about Tripp all the time as if I knew him personally, I wish I did get the honor to meet him.

    Hold Strong Courtney, you are an amazing person - You may never get over Tripp leaving this world but I see a big future ahead for you.

    I continue to keep ALL of your family in my prayers, and I will always follow your blog seeing your path, the one God lead you through.

    Xo, Jessica
    Savannah, Georgia

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  179. You are a wonderful person. Be mad, sad, angry, happy, or whatever you want. I am praying hard for you!

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  180. You are an Amazing Women and Mother! Thank You for being so strong..even though you don't feel like you are. You give so much hope to women and moms that are going through what you are going through and even the ones that are not. The moms that have healthy children realize the importance of being a great mom and for me I learn more and more from reading your posts about love. God's love was first and now we are able to share love all because God loved us first. Please keep blogging....you need it, deserve and and WE LOVE YOU SO MUCH!!!! I pray for you and your family! God Bless! I pray that Jesus will comfort YOU as he Has Tripp in His Arms! Love You!!!

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  181. Thinking of you. Miss your posts!

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  182. Courtney, you are a brave woman. My heart is with you.

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  183. May God be with you in your healing. May you enjoy every feeling and thought and treasure it forever. What a beautiful tender heart you have and what a blessing to have such a celestial person for your son. Thoughts and prayers are with you. Jess

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  184. I saw the following poem on Avery's Bucket List and I thought you could appreciate it. Praying for you.
    What Makes A Mother ?

    I thought of you and closed my eyes
    And prayed to God today
    I asked, "What makes a Mother?"
    And I know I heard him say
    A Mother has a baby
    This we know is true
    But, God, can you be a mother
    When your baby's not with you?

    Yes, you can he replied
    With confidence in his voice
    I give many women babies
    When they leave it is not their choice
    Some I send for a lifetime
    And others for the day
    And some I send to feel your womb
    But there's no need to stay.

    I just don't understand this God
    I want my baby here

    He took a breath
    and cleared his throat
    And then I saw a tear
    I wish I could show you
    What your child is doing Here

    If you could see your child smile
    With other children and say
    "We go to earth to learn our lessons
    of love and life and fear,
    but My mommy loved me so much
    I got to come straight here!"
    I feel so lucky to have a Mom who
    had so much love for me
    I learned my lessons very quickly
    My Mommy set me free.
    I miss my Mommy oh so much
    But I visit her each day
    When she goes to sleep
    On her pillow is where I lay
    I stroke her hair and kiss her cheek
    And whisper in her ear
    "Mommy, Please don't be sad today
    I'm your baby and I am here"

    So you see my dear sweet one
    Your children are okay
    Your babies are here in My home
    And this is where they'll stay
    They'll wait for you with Me
    Until your lessons there are through
    And on the day that you come home
    they'll be at the gates waiting for you

    So now you see
    What makes a Mother
    It's the feeling in your heart
    It's the love you had so much of
    Right from the very start

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  185. Courtney, I read your post as soon as you posted it, Tripp is never far from my heart, but just wanted to let you know I'm thinking about you today and continue to pray for you daily!!! I have a butterfly shirt that I got either right before or after Tripp's passing, so whenever I go to my closet and it's hanging there, I think of you two and pray that you are getting through this ok. I can't imagine what you are going through, but I've come to love you and my heart and prayers are with you! And I will NEVER forget Tripp! He was/is amazing!!! Thank you for sharing him with us!

    Sarah from NM

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  186. Happy Mother's Day! This is the first I have come across your blog, and I have to say seeing you and your little guy just brought memories and tears to my eyes! I have a Junctional EB baby, Dominic! Dominic passed at only 2 months of age, 8 years ago. He lives on in our memories. I have since, had 3 more boys. They know about their big brother and always ask if we can take a rocket ship to Heaven and see Dominic, as they are only 5yo, 6yo, and 3 months. You are an amazing person, that's why God trusted you to care for Tripp! What has got me through this is living as if he were here. Have the family trips, celebrate his beautiful birthday, most of all tell his story as you have been, never stop! He is always with you and plays a huge part in your decision making! I say good morning and good night to Dominic everyday. Some days I'll just start crying, I don't think that will ever go away, I don't want it to as much as I hate crying and wish I could always have smile moments. I realize that sometimes you have to cry and that's okay because either way your thinking of his beautiful face and the time you had with him! So again Happy Happy Mothers day! Just by reading your blog, your one of the best out there!!! Take care Courtney and GOD BLESS!!!!!

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  187. Happy Mother's Day, Courtney...although I am sure it is anything but. I am thinking of you and I know Tripp is with you.

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  188. i just happend to come upon your blog today of all days! seems we both have a lil mans 3rd birthday on may 14th. i still have my son and i have taken it for granted. your story has touched my heart in a special way and has infulenced me to open my eyes and my heart. To take a second look and appriciate what i have and know that it could all be taken away in a split second. Thank you for showing me the way!

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  189. I still cry for you Courtney. Not because I feel sorry for you but because if I could do absolutely anything to take the pain away I would and I have never met you. I couldn't have kids but God brought a Son into my life almost 3 years ago through a adoption opportunity. We have struggled with our own health issues not pretending that I know what you have gone through I don't have a clue. I thought I was grateful for my Son but when I met you and Tripp about a week before he passed away (and when I say Met I mean on your blog) my love for him and my patience for his antics for lack of a better word forever changed. Whenever I feel like I can't do anymore or can't take anymore I think of you and what you have done and continue to endure. We will probably never meet but I feel like I know you so well and as a Mommy I hurt for you. I honestly can not imagine the pain. I don't know that I could keep it together like you do. I am so glad you are letting us know how you are. This is your blog and we all Love you no matter how you are feeling. We will always be here for you and you never have to put on your happy face here. Huggs

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  190. My son was born on 5/14/2012 in Albuquerque! I have a cloth diaper company and started donating them to Debra because of your beautiful son and this blog telling his story. It's so strange that you just happened to be in Abq on our son's birthdays. I wish I could have given you a hug mama! Hang in there! God won't put you through anything you can't handle and He'll never leave you! <3

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