Monday, November 21, 2011

A LOT of catching up to do...

SO... 
I really don't even know where to begin or where I really "left off."  But I'll start off by being honest and saying that I've been a little secretive lately- but it's for good reasons.  Trust me.

Let me start with the GCSF.  I think I left you all a few posts back (I think in October) where I was giving him the Rocephin injections to try and get rid of his current infection so we could get his white blood cell count in a semi-normal range so that he could try the GCSF.  I had told Dr. D that the only way I was going to try these injections was if everything was lined up with the GCSF so that if the blood work was good, that there would be absolutely no "window" of time for his count to go back up before we got to start this new drug. Well, about 4-5 Rocephin shots in (just FYI, those shots were horrible- something I will never do again), we drew his blood and his white count was in normal range (high-normal, but normal).  
So, with the help of Tripp's amazingly wonderful pediatrician and our amazingly wonderful pharmacist, "Uncle Trea," I had the GCSF in my refrigerator that same day.  

So I started the GCSF (Granulocyte - Colony Stimulating Factor), giving it subcutaneously (under the skin, into the "fat").  This drug is used mostly in chemotherapy patients to help stimulate the production of certain white blood cells.  I won't go into detail about what this drug is doing for EB.  Because honestly, I don't know enough about it- it didn't work in Tripp.   But that doesn't mean it hasn't had good results in other kids or adults with EB.  But Tripp has a lot going on... he's on constant steroids that we can't get him off of (we tried and were unsuccessful) and even though his counts were normal at that time, doesn't mean his infection was completely gone.  And those were the two things that we were told could affect the results of this drug... but I had to try it anyway, to at least say that I tried. 

So GCSF is a no for Tripp. 

The next secret is kind of a big one.  But in my defense, I didn't want to get anybody's hope's up.  

After realizing that we had exhausted pretty much every option of making Tripp comfortable, I revisited the idea of the Bone Marrow Transplant.  There has been a lot of people emailing me and posting asking me if I knew about the BMT.  I've known about the transplants since they first started them about 2 years ago.  I have followed many of the kid's journeys through these transplants.  And when they first started, this just was not an option for Tripp- he was not yet sick enough and they were extremely dangerous and brutal in children under a year old.  If you aren't familiar with the Bone Marrow transplants that they are doing in EB kids, I'll try and tell you briefly what they are about.  The transplant is NOT a cure (at least not yet)... It is a chance for a better quality of life.  It is brutal... the side effects of the chemotherapy are just horrendous.  Reading about what those children went through (some of these precious kids not making it through the transplant) was heart breaking.  I felt that bringing Tripp in for the transplant at that point was giving up and taking his life.  

Well, at the point that we are at now, I felt like NOT trying the transplant would be like "giving up" and just watching him die in my arms in the rocking chair.  And talking to the Ringgold's (who's daughter Bella went through the BMT last year and lost her precious life), I found out that the chemotherapy regimen was less "toxic" in the current BMTs that are going on.  So, I called Dr. Tolar, one of the transplant doctors in Minneapolis, MN who is currently responsible for about 18 Bone Marrow transplants in EB kids up to date.  We spoke briefly about what I needed to do to get an appointment with him ASAP.  The appointment would just be us deciding if he would even be a candidate for the transplant.  Dr. Tolar was absolutely amazing.  Usually, Tripp would have to travel to the "initial" appointment, but being as sick as he is, there was no way I could have brought him to Minnesota twice.  So he said that it was fine if I came without him. 

Like leave him?

(GASP)

So, I worked HARD contacting all of Tripp's doctors and getting all of his charts faxed to Minnesota.  I had to write a one page summary of Tripp's life (haha)... that turned into four pages.  I had gather pictures of his wounds from birth until now and we had to draw blood for his HLA testing (marrow donor).  All of that was sent to Dr. Tolar in Minnesota.  Now we had to see when the earliest time was that I could get an appointment, being as he is out of town a lot.  He fit us in within the week.  November 18th at 11:30am.  

another (GASP)

So I booked the tickets right away.  My boyfriend, Stephen, took the trip with me.  I know, I know... now the secrets are really flowing, right? :) He has been by my and Tripp's side every day for quite some time now.  Heaven-sent??  I think so.  So, he and I left Thursday evening after bath and got back late on Friday night.  My sister flew in town again to help my mom.  Mrs. Pam (MeMe) was out of town for the week or she would have been here like she normally is every week.   

The only tickets I could find with a week's notice worked out pretty well.  There was no way we could pull it off in one day because our meeting with Dr. Tolar was planned on being about 4 hours.  So we had to stay one night.  We left on bath day, so me and mom got my little man bathed early.  My sister flew in right before we took off so it worked out well.  And mom and Britt didn't even have to change his neck/trach bandages because I was back the next night to do it (that is done every day).  I still can't believe I left my bubba overnight.  But he was in the best hands possible- no doubt about that!!  Mom and Britt didn't sleep much- they just rotated and took turns watching him sleep because they were scared they wouldn't hear him and wake up to suction him when he woke.  It was a blessing the way things happened, though, because he was sort of "knocked out" after bath and for the rest of the evening I was gone, so he didn't really reach for me much (he's been a Mommy's boy lately, and I'm NOT complaining... I'm loving it).  So to leave for an entire night was really hard.  But I knew I had no choice.   

ANYWAY... on to the news...

Not necessarily good news, but it depends how you look at it.  

We met Dr. Tolar on Friday.  He was incredible.  He made me feel so comfortable.  He shares my passion for EB, for a cure, for these poor children.  He is a good man.  And I'm so glad I took this trip to meet him in person.  It helps you to trust someone by actually looking in their eyes.  
He walked in and I could immediately tell that this was not going to go as I had planned.  
But that was okay, too. 

The first thing Dr. Tolar said was along the lines of, "I looked through all of Tripp's pictures and charts and he's a very sweet and very brave little boy, BUT he is very very sick."  
I knew right then and there that my idea of what I thought was going to happen was not reality. 
I was let down and relieved at the same time.  I knew this was a "last resort" on saving Tripp's life.  But I also was absolutely sick to my stomach about putting him through such an awful procedure when he's already been through SO much. 
Now don't get me wrong, Dr. Tolar and I talked a long time about everything.  He made it very clear that if I wanted to bring Tripp to MN, that he would make it happen and that we could try to get him to a point where the transplant might be "semi-safe."  But he also said that he is 100% sure that Tripp would have every single complication from the transplant.  And he looked me in the eyes and said that he thought that Tripp was too sick to survive it.  He was not trying to "sell me" the BMT, he wasn't telling me that for my benefit, he was sincerely concerned about my son.  I felt that for sure.  And I respect him for that.

I think the biggest thing that stood out in our conversation with Dr. Tolar was when he told me that he "sat in" on an EB support group.  It was a group of older children who had Dystrophic EB.  He said that when the kids were asked if they would rather have never been born than have to live with EB, EVERY. SINGLE. ONE. of them said that they would rather die than live with EB.  
That is incredibly heart-breaking.
He said that I am "Tripp's voice."  Tripp can't tell me what he wants, so it's my decision to do what I think he would want and what I think is best for him.  

He told me that even though Tripp's biopsies were inconclusive to Herlitz or non-Herlitz (the two subtypes of Junctional EB), that he was 110% certain that Tripp was Herlitz- no doubt.  And it was then that he looked at me so sincerely and said that it was absolutely unbelievable that Tripp was still alive.  He complemented me for my care and devotion to my son.  It wasn't until then that I started to cry.  I know part of the reason Tripp is still alive is his care, but to hear it from Dr. Tolar... was pretty humbling.
He said it was admirable that I would make the decision to keep him at home for the "end of his life" instead of opting to take him to the hospital.  
Admirable = the hardest thing I will EVER go through.

So now... what's next? 
Your guess is better than mine.  Dr. Tolar said that he would help me with whatever I needed and would support me in whatever decisions I made.  He also said he respects my decision not to go forward with the transplant.  He, along with our amazing team here, is going to help me with pain control and trying to keep Tripp as comfortable as possible.  

Back to square one.  

When we came back from Minnesota on Friday, Tripp was feeling horrible.  The next day, he was running 102.6 fever, shaking in pain, and just crying.  He hasn't wanted to get out of his bed, because he knows he has to get his diaper changed.  Then he doesn't want to go BACK in bed from the rocker because he knows he's got to be changed again.  I switched him back to the Dilauded for pain (along with the Methadone) and it seems to be helping a little, at least sedating him a little more than normal.
Not something I want, but again... it's not about me.  It's about his comfort.
He hasn't stood up in well over a month.  He lays on one side of his body, in the bed and in the rocking chair... hardly wanting to move at all.  But of course every now and then, fighting hard and dishing out smiles.  God, I love this child.  

How does a mom opt to keep her son at home and watch him die?  I'm so sad.
I don't know.  I have NO clue how hard it will be.  I have no clue what it will entail.  But all I know is that my little boy deserves nothing more than to be COMFORTABLE.  And if the transplant is not an option for him, then taking him to the local hospital and sticking him with needles and IVs is definitely not an option either.  He will see Jesus when it is time and when he is tired of fighting.  
 I don't know when that will be.  And I'm trying to become okay with that.  

I'd be flat-out lying if I said that I'm not angry.  Of course I'm angry that my baby is suffering so much. 
But I'm praying A LOT.  More than I've ever prayed in my entire life.  I'm trying to understand.  I'm praying and pleading and begging to understand.  But I know and trust that I WILL understand with time.  
I think I'm struggling the most with "keeping him comfortable."  If I have to keep him home and watch him die, then why can't God at least help to make him comfortable? 
ONE DAY... I will understand. 
And like I told Dr. Tolar, I will fight to my death to cure this disease so that no other child has to just "wait to die."  And so that no other parent will ever have to knowingly watch their child's life fade away.

A sweet lady wrote this on the "Prayers for Tripp" Facebook page.
It made my heart smile.

While I prayed for this child this morning, I asked God, "How can this be? Why? This poor child is innocent and hurting! Why does this child endure this? What could possibly come from this?" He answered me, "Child, this child is made PERFECT! He is my vessel! He is the exact tool being used everyday to draw others into my kingdom! Although through your natural eye you see pain, sores, disease, hopelessness, and weakness... I see comfort, beauty, health, joy, strength and compassion! This child has brought many to me! He has brought the hard hearted to be compassionate! He has brought the depressed to have joy! He has brought many that were weak and caused them to be strong! This child has brought LOVE to so many and THIS CHILD is MY CHILD! Perfectly made indeed!"   

Thank you perfect wonderful sweet strangers... for loving my child.  
When I feel like every day is groundhog day and I feel like I can't possibly get out out bed just to "watch my child suffer" knowing I can't help him... you all give me the strength to do so one more day.  

Now, I've held off on writing this paragraph for a while now, but I have to get this off my chest.  It's time for me to educate the (very few) people who have been leaving ignorant and ugly comments on my blog.  Such as this little "preview":

"A real mother would let their child go if they were suffering so much. I would rather my child pass peacefully from this world in my arms instead of endure a lifetime of blisters, wounds and blindness just so I could selfishly keep him in this world for my benefit."

Newsflash, lady.... I cannot just take my child's life.  What would you suggest I do?  Suffocate him?  Overdose him?  Euthanize him like a dying cat??
I'm trying to write this without being ugly, because I know that what was said was out of ignorance and people that write or think these types of things do not fully understand our situation. 
The main point is that people that write these ugly things do not have sick children.  So they don't have a clue what they would do in my situation.  The last thing I am doing is using Tripp's sickness for my "benefit"- I wish I didn't have this blog about my sick child.  I wish I didn't have to fight everyday for his life.  I wish it wasn't my life-goal to educate the world about this life-threating and cruel disease.  I wish I didn't have to be "mom-inated" in contests because my child is dying.  I wish he was healthy.  I wish he could run and play like your kids do.  But he can't. 
So before you go casting stones and thinking that I'm "selfishly keeping my son alive."  
Get your facts straight.  
If I could take my son's place, I would. 
If I could take his pain away in any way I knew how, I would.  
But he's not an animal.  I cannot euthanize my sick child.  
So you (very few) people out there who call me selfish for "letting my child suffer"... 
It's not my decision when he leaves this Earth... it is God's.  But it IS my job to make him as comfortable as possible until that time comes.  And I am trying my absolute hardest to do that.  
I pray that God never gives you a sick child that you YEARN with every inch of your being to save.   

And P.S.  I forgive you for saying the ugliest things I've ever read in my life.
And I will pray for you.

But on a much brighter note, we are receiving so many ornaments that we had to get another tree!! They are flooding in.  You guys are unbelievable.  I just can't thank you enough.  
I hope everyone has a great Thanksgiving week.  
I know, along with all of you, I have MUCH to be thankful for.  
Make sure you thank God for your many blessings... 
I know I will. 





  
Love,
Photobucket

219 comments:

  1. I'll never understand how people can leave such vile comments on a blog that is so laden with beautiful, heart-breaking love and pain. :*(

    I keep praying for you guys. That's all i know to do. . .just. pray.

    Hugs

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  2. I have written things and erased them over and over because I just don't have the words to say! I am heart broken and speechless! Please know that we are praying for y'all!!!

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  3. I don't post a lot, but just wanted to let you know that I read every post. :) This made me tear up, thinking of everything you're going through and not getting hopeful news about the BMT.

    As far as the nasty commenter, shame on them. Before you even said it, I thought, she obviously does not have a sick or dead child. No one who does would EVER say that to you. Tripp isn't being kept alive. He's here for whatever reason, and he's a miracle. You're just trying to keep him comfortable while he's here. That comment disgusts me. I'm happy you addressed it here, and I'm sorry you had to read it.

    So many hugs to you, and you are always on my mind.

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  4. I really don't know what to say other than you are an amazing mom, and I pray for you and Tripp constantly. I read this post with tears, but also in awe of YOU. Stay strong. You have so many people, most you do not know, who are standing right beside you in this. Big hug from Birmingham, AL.

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  5. Courtney.. You are the most amazing mother! And these people that are writing ugly things to you can shove it! Ignorant is exactly what they are. I think and pray for you and Tripp everyday and just know God and all of us are on your side. I cant express enough how much of an inspiration you are to people.

    And girl you go ahead with your boyfriend! You deserve a good man who makes you happy and puts you and Tripp first!

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  6. I pray for you and your sweet sweet Tripp often! I have never commented but felt the urge to today. You are one strong Mommy. I want to let you know when I become overwhelmed in my daily tasks or life in general I often times think back to you and I am quickly humbled and brought to my knees in prayer for your ever so difficult situation. Not many Mommy's could continue with what you do on a daily basis and still remain so hopeful and full of faith. God has done amazing things through Tripp's life and he will continue to do great things! As for those that say mean things, what better thing to do for them than to pray for them. You are a true example of love!

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  7. You are incredible, Courtney. Really, truly. I've complained about the most insignificant things today and there you are, watching your sweet boy suffer every moment. I don't know how you do it but Tripp is so blessed to have you, as you are to have him. I know we don't know each other but I pray for you and Tripp - for Tripp's comfort and God's will with his life.

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  8. That last picture is just so heartbreakingly sweet. I am in tears, and my prayers are with you.

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  9. Ugh, I am sick about what that ignorant person said to you. Absolutely disgusting and I'm sorry. Where is the empathy that so many people in this world lack? I don't know.

    On to more positive things...what an AMAZING little boy you have! Such a special little spirit and child of God. While I know he is in a great deal of discomfort and pain, I pray that our Savior will comfort him, and bless him with His spirit. Very few people in our world suffer the kind of physical pain your boy has, but our Lord knows of his pain. And He loves him, more than we could possibly ever comprehend. I have no doubt he is watching over all of you. Of course, I know that doesn't make any of this easy, but I hope you can feel that comfort during the difficult times ahead.

    I'm grateful I found your blog. Blogs like these always bring life back into perspective...what's most important. So thank you for putting your story out there. I'm so sorry you're going through all of this. Your baby boy is so lucky to have you for a mom! I know he just adores you and somewhere in that wise little mind of his, he knows that everything you do is for him. May the Lord bless you both.

    Emily Murray

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  10. Courtney.. you are an amazing mother! Whoever the people are that are bashing you can shove it! I cant express enough how much of an inspiration you have been to me in more than 1 way. Tripp is a HERO an so are YOU!

    And you GO GIRL with your boyfriend! You deserve someone who makes you happy and can handle things.

    My prayers are with you and Tripp everyday!

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  11. I don't usually comment because I simply do not know what to say....however, this post in particular was so moving. YOUR strength and courage as a mama to her baby boy is awe inspiring. Know that I am praying for you and your precious beautiful Tripp.

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  12. Every post I read from you is so beautifully and wonderfully written. It is obvious that you are a wonderful, devoted, exceptional mother. I pray for you and Tripp everyday. Bless your sweet family.

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  13. My sweet sister. My heart breaks for you. Bless you for loving Jesus with your whole heart despite your trials. Tripp is a lucky boy to have a momma full of so much love. You are in our prayer as well as Tripp.

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  14. I have been reading all you blogs and praying or your family and expecially your little man Tripp. It saddens me to know that your son has EB. Your are an excellent mother doing everything you can and I don't know what I would do in your shoes. Don't let anything bring you down, expecially the ignorance of other uneducated people. You are a strog woman and Tripp get that from you. I cry for you an Tripp and I pray for y'all any chance I get. Remember "Hope isn't silly if we all band together!"

    Always in my prayers.

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  15. I am so sorry that Tripp has to endure such pain. My prayers are with you and your son.
    Jennifer

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  16. God Bless Tripp, you, & your family--

    My son had cancer, so, I understand watching your child suffer"part"-
    Courtney, my whole family prays for all of you & we will say a special prayer for you guys on Thursday-

    love & prayers from Yorktown Heights, nY

    xoxo
    cathy

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  17. I have been following your story for some time. I am so sorry Tripp, you, and your family have been chosen for this journey. I continue to pray for all of you. You are such an amazing mom. Thank you for keeping us updated.

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  18. Courtney, your secret of a special someone in your life makes me smile~ You are simply the most wonderful mother EVER~~ I pray daily that God helps you through, that he will hold you up when the moment comes, and that he takes just as good care of Tripp as you have! God bless you~ Hugs

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  19. Courtney - You are such an amazing mom. Thank God for you and thank God for your precious baby boy, Tripp. You are both an inspiration, and are so beautiful. I don't know how I ever came to know about your blog, but I have been praying for you and Tripp even since that day. I can honestly say that God has used you and Tripp to change my life. Peace and comfort to you.

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  20. You are an amazing mother. I don't know how you do it, but I hope if I ever had to go through what you do when I have children I hope I have your strenth.
    I look forward to seeing videos and good updates and I always end up crying... I will pray for you and your little man

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  21. Reading this, tears, as always. So sorry that you endured hatred like that. I think you are doing an amazing job keeping him comfortable. And the blog is your outlet to complete what you said, LET PEOPLE BE AWARE OF THIS DISEASE! I will be honest, I had no idea what it was until I read your blog. I literally wait everyday for you to post so that I can read. I am sorry that the BMT will not work. I can only say that I pray for you and Tripp. You are amazing and let NOBODY tell you any different.

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  22. I can't believe someone would leave a comment like that. Her momma must not have told her what my mother told me all the time growing up: If you can't say something nice, don't say anything at all. I think you are doing a phenomenal job. And I agree that Tripp (and you) are being used for the glory of God although it is hard to understand why He allows so much pain. God bless.

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  23. I cannot believe anyone could be so ignorant to leave you a comment like that. I am so sorry.
    I admire you and your strength and think you are doing an AMAZING job.
    Tripp is so blessed to have you!

    I am continuing to pray for his peace and comfort and for you and your family too.

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  24. I'm so glad you were able to meet Dr. Tolar, he is amazing, as is the whole team here (I'm a pharmacy student at the University of Minnesota). I wish there was an answer for Tripp...something to relieve his pain, and yours. I'm glad to hear you have support, whether it be from your family, a boyfriend, whoever supports you is clearly an incredible person, and strong like you are. Best wishes always.

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  25. Wow I am blown away by you and your son. I would do anything if it would help your son live. He is so sweet and reminds me of my own son that I have been crying feeling so helpless since I have seen your story. He is a miracle and no doubt an angel here on earth. I will work till the day I die to raise awareness and a cure for EB. I have never seen anything like it! Breaks my heart! Your an amazing mom, I don't know how you do. I will continue to pray for Tripp-he amazes me!!! I sent Tripp an ornament...I would send a whole tree full if he would be in no pain. Keep us posted on his care

    Kelly Cunningham-Holton
    Sacramento, CA

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  26. I'm new to your blog but I must say I'm impressed. You are such a wonderful mother and I honestly don't believe many moms could do what you do. I'll be praying for Tripp. He's such a sweet little guy!

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  27. Courtney, I don't remember how I originally found your blog (I think maybe a friend on Facebook pointed me to it), but I'm so glad I did it. You are an inspiration--loving so fully, persevering so strongly and rising so dignified above ignorant criticism. I always pray for you and Tripp. May you both find comfort.

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  28. You are amazing and strong and Tripp is so incredibly lucky to have you. An inspiration to me. ~Jen, Honolulu Hawaii

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  29. In this season of Christ, you and Tripp are constantly in my thoughts. My mother has lost her firstborn to electricity and her last child to leukemia. She has always believed that God never gives you a cross to heavy to carry. I know that she made it through these hard times through her faith.
    We all need to remember that we are not here forever. This is not our true home. Thank God that we had the privilege of being blessed to have our loved ones in our lives and that he trusted you to be there to take care and love Tripp on his journey. God bless you all.

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  30. You are the strongest most loving woman I've ever seen. Your unwavering love for your son absolutely amazes me. It breaks my heart to see you and Tripp suffer so much. Please do not allow the terrible things people say bother you. Your strength and love are so admirable I could only hope to be as wonderful of a mother as you are.

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  31. Courtney you are an amazing mom! I have a juvenille diabetic son,and I have done anything and everything for him to help him have a happier life. But nothing compares to what you have been through my sweet friend. Hold your head up high, when you have God as your father guiding you in everything. How can anyone in this world think your doing wrong. May your day be filled with peace love and happiness for your baby boy. Praying everyday for you and Tripp. May God Bless you both.

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  32. I think your doing an amazing job. I can't imagine ever having yo be in you'd shoe. ice worked in hospitals and nursing homes for several years now and you seem to be the best nurse your son could have asked for. you seem kind, patient, gentle, and loving. if I had a child like yours I could only imagine I would want to be in his place to stop his suffering but I would never want to let go. I've read all your posts but never commented because usually im crying to much to see what im typing. I think ur sons quality of life is probably tens times better than what a hospital or home nurse could have offered. I pray for a cure. I pray that you and your family stay strong. I pray that your baby doesn't suffer any more than is necessary for gods plan. I also pray that god smacks some sense into those ignorant few. to do nothing is heartless, but you have the biggest heart imaginable. most people would not have made it as long as you. you are amazing, must be where tripp gets it from. I hope you both have a wonderful holiday season.

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  33. Courtney, I don't know the right words to say most of the time so I dont post but I check your page once a day for updates. I have a 7 yr old son "with mild autism" and a new 8 month old. Every night for months my 7 year old who lacks understanding for alot of things prays for " baby Tripp to heal and be shown Gods miracles and dont let us have nightmares, charge the forcefield and cut the bad wires" He asks about him alot and loves to see his cute videos. We think of Tripp as part of our family through God kingdom! It is amazing to see how Tripp can connect to my son whom cant even connect with his own baby brother. You and your son are a blessing to our situation and I wanted to say " thank you from Me, my family, and from Tripp! I'm sure he would tell you himself... Your Love helps more than just yourself through hard days! You are doing whats best for Tripp Never forget THIS... people with little understanding can and should keep their thoughts to themself! God bless you, your family, Lil Tripp, and the thousands of souls he touchs buy being one of God's most Beautiful creations! Xoxo's

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  34. Courtney, it is my guess that the people who post these ugly comments do not have children. There is no way that any " normal mom" would ever post such a comment. The heartbreak and fear that moms feel when their children are hurting or sick can only be felt by a true mom. God bless you and your family Courtney. You all are so loved and do help bring people closer to God.

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  35. Nothing to say Courtney but I am Praying for you and the choices you have to make daily. NO ONE should have to make.

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  36. Sweet Courtney, you are doing the best for Tripp that you know how to do. Keeping him home, keeping him comfortable. It's humane. My daughter is end-stage mitochondrial disease. We are on palliative care, and constantly debating when to go to hospice. Like you, I can only hope that her passing will be peaceful and painfree. But until that time, what can we do? Love them, keep them comfortable, and sit in the rocking chairs all day rocking them. Keep going Mama. ((hugs))

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  37. Courtney,

    I think you are an absolutely amazing woman. I am so glad you have a strong support system, aside from the ugly comments some negative people leave. I love the poem that reader wrote, because it is so very true. God is so amazing. Tripp is so lucky to have a mother like you. My son has some special needs, as far as attention, speech, etc. I don't know if I could be as strong as you are. It shows me that even though sometimes we believe our struggles are hard, there are always people out there who have it worse than we do. I will keep your family in my prayers. And even though I can't imagine losing a child, I do know that there is an amazing place for them to go to.

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  38. Tears and tears are just running down my face. I ache for you Courtney. My heart breaks with your heart. There could be no better mother than you for Tripp. You are a gift to Tripp as he is a gift to you. God has plans and He is using you and Tripp in ways that you might never know. He has given you many, many supporters to make it through this whole ordeal.

    I love your strength and courage and the love you have for your son. Praying for you and for Tripp always. Hoping he will be comfortable but I won't give up on a miracle.

    You have been given much grace for you to understand and forgive people who leave thoughtless comments. You are doing the right thing and if I was in your situation I too would be doing what you are doing; the very best for my child.

    Loving and praying for you and Tripp.
    <><

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  39. We lost our daughter Brea 5 years ago at one and one half years old to Sudden Unexplained Death. Yet I do not even pretend to get what you must be feeling. One loss cannot be compared to another! I had the comfort of knowing she died taking a nap with her Daddy, not to have to watch her in pain day in day out! You are an inspiration to me and your private decision should be just that and it will not nor could it be be understood by anyone but you. Bless you!

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  40. Hi Courtney. I have been following your blog for sometime now and have always wanted to contact you somehow. Today, after reading your update i just had to create an account so that i could leave you a comment. I just wanted to let you know how amazing you are. Tripp is so lucky to have you as a mother. There are so many of us out there that could not do what you are doing, are not STRONG enough to do what you are doing for your son. I think about you and Tripp every single day. You are a hero in my eyes.

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  41. im usually too blurry eyed from all the tears to even comment and usually I don't even know what to say to make you feel better. I have worked in nursing homes and hospitals for several years now and I can't imagine doing what you do. you have a never ending job as a nurse and your son is so lucky to have the best nurse. u seem loving, gentle, and patient...plus your mommy. people who can't see how amazing you are for making his quality of life as good as it is are just ignorant. they do not understand that to do nothing is neglect and goes against all aspects of being a mother. Continue to be strong til the end. I pray for Tripp and for a cure. You are the most amazing person and im glad you have Stephen(I think you said your boyfriend) there for support. I had been curious. I personally know being a single mom is hard enough and I also have a godsent man who supports me thru everything. It takes a special person to handle this type of situation so both of you deserve awards and Tripp also deserves an award for having the strongest will and much much more. God bless your family and I hope you enjoy your holidays.

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  42. Hi, I am new to your blog. You are an incredible mother with an incredible son. I read this post with tears in my eyes and hope in my heart that one day I will meet you both, whether here on earth or in Heaven above. God bless you both.

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  43. Courtney, I don't post often but I read every FB and post you write. I am praying for precious Tripp and that God relieves his suffering. He is an instrument of God's love and that poem from that lady is beautiful. You are a strong, SELFLESS woman who will go to heaven for all your love and devotion to both God and Tripp. Like you said, those people are ignorant. Ignore them. Saying prayers for you every night and PS glad you have a wonderful boyfriend to support you. You deserve it!

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  44. Praying for your strength and your sorrow and for the little man. He is a precious gift from God. I know you long for his pain to be erased and I pray that God answers your prayers. I pray that daily you can find what he enjoys and that you can keep him pain free while he snuggles you. You are a strong woman and I am in awe of the grace you possess to face your daily challenges.

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  45. I think of you often and how strong you are and this post shows exactly that! You have got to be one of the strongest women to ever have lived and the fact that you are so loving, dedicated, selfless AND so readily forgiving towards (heinous) others is saint-worthy, no doubt! Here here to one of the best mothers the world has ever known! And a big fuzzy Elmo hug to your precious boy who is loved by so many!

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  46. Courtney, You have an amazing heart and soul as done your son.I have been following your blog for over a year and have prayed for your family every night since then. I have a son who is close to Tripp's age and I can not for a second imagine what you are going thru. Don't ever doubt what you have done as a Mother, EVER!! You have only done everything and anything to help your son. You are truly an inspiration!!! May GOd bless you and Tripp and minimize suffering for both of you as much as possible as he takes you down this path called life.

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  47. I am so sorry that there are people out there that can be so ignorant. You are one of the strongest people that I "know". You are in my prayers. Thank you for sharing your journey.

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  48. Courtney,
    You are an amazing mother who loves her baby and wants to do everything possible for his life and for that I am thankful!! All of us mothers would do the same thing. I don't understand what the Lord is doing but I do know that all things work together for good for those who love the Lord and are called according to his purpose. My prayer for you and you sweet boy is for God to mercyful during these days and that you will see His love all around you. Sending you my love, Lori

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  49. Courtney, I am so sorry that you are having to make such painful for your amazing little boy. I'm glad you recognize the ugliness of what that person said to you. You would obviously give anything for your baby to be pain-free and happy. Every bit of joy and happiness he has had is because of you. Our daughter passed away at nine months old last year from a sudden bacterial blood stream illness. Her sickness was very brief and at a certain point (when she was on ECMO) it became obvious that stopping treatment and moving into comfort was the only option. It is by far the most agonizing decision a parent could ever make. To let Tripp be at home where he is comfortable and loved is the greatest thing you can do for him. It takes courage, love and complete selflessness to make these decisions. In the end, the most important thing is how you feel about the decisions you make for your child. No one has the right to question it and there is no doubt that Tripp is thankful for the decisions that you are so lovingly making for him. You are also giving yourself a wonderful gift by being with him in a comfortable, supportive environment where you can soak up every second and detail of him. Peace to you and your incredible little guy!

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  50. Like others, I write and re-write this, because what kind of words could I possibly say to you? While you deliver faith, hope, and love to us all, we struggle to find words to suffice how much our hearts and prayers are with you. You are an absolutely amazing mommy. I pray daily for you and Tripp. I also pray that I may be more patient and loving to my children, and that when my nerves are being pushed and tested, I can remember just how blessed I am to have two healthy children. I hug and kiss them as many times in the day as they will let me. You are doing an awesome job. You are incredibly strong! Even with the nasty comments, you rise above and remind us all what it's like to be a Christian. Jesus certainly is working through you and Tripp in many ways. I wish that I had words of comfort, but I know that y'all are in the arms of God and His love will deliver the comfort you truly need. Thank you, Courtney, for being the person so many of us strive to be.

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  51. Courtney...you are an amazing mommy and Tripp is beyond blessed to have you..don't EVER let anyone tell you otherwise and you are too smart anyway to let that get to you. My baby girl had a positive coombs test when she was born...we live in a small town and she was almost airlifted to a large city for a complete blood transfusion; the doctor said that if she doesn't get better and if the blood transfusion does not work she will be "a vegetable"...I will never forget those words. She is fine and did not have to be airlifted. After going through that you look at life differently; and as scary as that was to me I cannot begin to imagine what you are going through with your sweet angel and what you have already endured. You are an amazing, wonderful and strong person. May God Bless you and your sweet Angel Tripp. I will continue praying for you and your family. Love you. Nicole Wish we were closer so I could help you more!

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  52. My heart goes out to you, I cannot imagine your pain. Tripp is so loved by people, like me, who have never met him. His suffering is truly temporary and I am so thankful to know that his healing and comfort will last all of eternity. God can work with broken hearts, Tripps life story breaks the hearts of those who hear. Though not an enviable position in this life, his suffering is not in vain, he is a blessing to this world. Praying peace that passes all understanding, courage to trust that you will see him healed, faith to know that Gods comfort will cover even this in due time.

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  53. My heart breaks to read the pain that Tripp has to go thru everyday, but it soars every time I hear of another day he is around to love him mommy. I have prayed often for you and Tripp. Even with a child with EB I can't imagine what you go thru everyday. Through your blog I have come to love both of you. God definitely has a play for this little boy and his mom. I pray his peace for you and comfort for Trip.

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  54. Praying for you Courtney, and your precious baby boy!

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  55. Oh Courtney, you are such a strong woman. We are praying for your sweet little boy and I will never forget how strong he has been for the past 2 years. God be with you all.

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  56. You are such a strong mom to do what you know is right for your son. This is my first time commenting, although I've been reading since the beginning of your blog. You and Tripp have done so much to educate people about EB. I have EBS-DM & I was 24 before I found the name of what I had (through my own searching) & 35 (this year) before I finally got a doctor to officially diagnose me. Growing up with "weird skin" that meant I couldn't do things & couldn't really explain made a difficult childhood worse. This year I was telling an acquaintance about EB during awareness week & before I could even mention the name; she asked "is that like EB? Have you read about Tripp?" A random person, with no personal connection to this disease actually knew about EB. I almost cried. Thank you for sharing so much of your journey with us. We pray for Tripp's comfort & your strength daily.

    Kristy F.
    Gonzales, LA

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  57. I'm so sorry that you are sad, Courtney. Just know that you have so many people here to support you through this most difficult time in your life. I wanted to share that I find it neat that the BMT doctor told you that you are keeping him alive. I was just telling my husband the other day about the poor orphan EB babies and how I doubt that they will thrive for very long without the type of love and support that you give to your son every day. I truly believe that Tripp is still alive because of your love for him. Every day he opens his eyes again because he loves you so much and has to look forward to seeing you again.

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  58. I don't normally comment, but I read your blog faithfully. I wanted to post because of the ugly comment that was left on your blog. I know you will hear this a million times, but I feel sorry for people like that. I feel sorry that they think they know more than everyone else and feel they need to tell people so. And it just blew me away that she felt that you were letting that sweet boy suffer. She can't be serious.

    Anyway - your family is in our hearts and prayers everyday. Hang in there.

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  59. I know you hear it all the time but he is so lucky to have you. You are truly a Godsend to him. Keep strong, I'm sure it's incredibly hard, but you've got the support of more people than you could ever know.

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  60. Thank you for this update. I continue to pray for you and your precious sweet baby - i pray for his comfort and for your strength and I praise GOD that he has provided you with a precious loving support network.
    lifting you up,
    a momma in spring, tx

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  61. Courtney,

    You are the strongest, bravest mommy I know!! Do not ever doubt for a second that you didn't do something enough, didn't make a good decision, or worry about the people who aren't able to see the *big picture*. You are right, those comments come from not only ignorance but lack of personal experience...and well, God has a way of teaching lessons, in whatever strong of subtle way He choses, and will show them their mistakes. And a mistake it IS that they leave such hurtful messages. Shame on them! If I knew who it was, I'd defend you sister!

    Doctor Tolar is right -- it is because of YOU, and your love and care that Tripp has made it this far. He's one lucky little boy because he has the most phenomenal mama around! :) A mama that would move Heaven and Earth if she could just to take away his pain; just to ease his suffering.

    And your Mr. McWonderful? OH HOW HAPPY I AM FOR YOU!! OH COURTNEY!! YAY! I'm sure he is the most amazing man and I am certain that God sent him to you! Thank you for sharing your *secret* with us!! :) :)

    Keep fighting Mommy Courtney. We are all here for you, whenever you need us. And baby Tripp, you are in my prayers always.

    XO,
    Katie & Family

    P.S. Happy Christmas Tree Decorating! They both look great!

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  62. I love you, Courtney! Please don't ever feel like you need to explain or justify yourself - you are a DARN good mommy and Tripp's guardian angel. Don't let anyone tell you differently!

    Whew - now that I have that off my chest! :)

    Thanks so much for the update. I've been praying for sweet Tripp and also for you, but now I know that you need specific prayers for wisdom and peace as you care for your angel. It sounds like Dr. Tolar is an amazing doctor and praise God that he was so honest with you - even if it wasn't the news you wanted to hear. I'll pray that you know what to do, and how to keep the Little Drummer Boy as comfortable as possible.

    Your Team in TX is pulling for you!!!

    Love,
    Laura

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  63. those people you talked about in the end made me so MAD!!!!! ok, if your poor child was trying to pass away peacefully in his sleep and you were keeping him alive in some sick and not natural way...yea, that would be wrong. but giving him medicine and keeping him out of pain as much as possible until it's time for him to go to a better place? please. they need to chill out. and some of those putting their two sense into it don't even have kids probably. i couldn't help but rant a little. Always wondered what I would do if I had a sick baby, and I hope I can do as well as you. Keep up your love and devotion, it's miraculous to read about.

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  64. Courtney- You are incredible - hope you don't let the negativity get to you for a second- you and Tripp are AMAZING, STRONG, and an INSPIRATION.

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  65. I am so sorry you would ever get a negative comment - unbelievable! You are the BEST mother I know! I've learned so much from you! I'm also so sorry you and sweet Tripp are going through this.
    Y'all are constantly in my thoughts and prayers - Kelley

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  66. Courtney and Tripp - everyday we pray for you, and think of you, and wish so much that Tripp and Max (my 3 year old) could play together. Peace be with you -

    “I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.” Mother Teresa

    With great love,
    Heather, Steven, Jillian, Hannah, and Max, who asks to see Tripp's picture and "play with Tripp" all the time....

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  67. Courtney, not only do I love Tripp but I love you as well! As sisters in Christ, I pledge to be here for you even though we don't live in the same place. Through this blog I have come to know and admire your faith and courage (and Tripp's), and I will continue to keep you in my prayers each and every day. I have shared Tripp's story with my friends at our local writers group, and they keep you both in their thoughts and prayers as well. So Tripp is touching lives here in NJ; that's four more voices reaching the ears of God on his behalf!

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  68. As always praying for you and Tripp! You are both touching so many lives. God has Tripp here for a purpose, never let anyone tell you different!! God bless you both! Peace and comfort surround you!

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  69. I think about you and Tripp every day. I wish I had something better to say but I want you to know that I care so much. I wish there was something I could to do to help. I pray for you and send positive thoughts your way. You have an amazing little boy that has made a difference in so many lives including mine. I want you to know that one of the things I am thankful for this year is getting to know Tripp. Thank you. My heart goes out to you. You are an amazing mother. Your son is an Angel.

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  70. You are to be commended for the care and love you provide to your son. I'm so sorry there are such ignorant people that leave ugly remarks on your blog. I, too, will say a prayer for them. I wish for Tripp peace and comfort....you are a fantastic mom!! Peace to you too! Allison

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  71. You are an amazing mother and I cannot believe anyone would have hurtful things to say. I can tell how much you LOVE your son.

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  72. Courtney- I don't even know the right words to type here. You are so beautiful. Truly, Tripp is showing me a little of Christ every day. I think of you two all of the time! Sometimes in my prayers I ask God to give me a little of your exhaustion or Tripps pain. If you are too tired to prayer- know that there are many praying and lifting you up! You are one of the most selfless poeple I've ever known!! Much Love!

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  73. Courtney, Prayers will never cease for you to have strength and wisdom as you go through this journey. Tripp knows so much more than we do I do believe. He knows his mama is storming heaven and earth for him and that it is mama's love that is the only comforting thing in this life. I have no words to offer that are not a cliche', but my mama's heart is heavy for you. I know you will make the best decisions in a situation where 'best' is only relative. I will pray hard that satan stay away and not put anger in your heart. I know he works overtime in situations where our finite minds cannot understand. I could not imagine not feeling anger and frustration. Thank you so much for sharing your life on this blog. For what it is worth- it has changed my own life. I am so so happy that you have found some comfort and happiness in one very lucky and blessed boyfriend! Tripp is smiling too for his mommy :) Happy Thanksgiving to you and your family Courtney.

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  74. ((((hugs))))) People are so ignorant. Makes me sick. We could have taken our son off life support, but I couldn't take his life, or decide when he should grow his wings. Like you said God determines that! Many prayers for you and Tripp

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  75. You are an inspiration and my hero. I pray every day for God to ease Tripp's pain. I check on your blog every day, to see if you've posted an update on how he is feeling, and I think about you and your son frequently throughout the day. It humbles me and puts everything in perspective. Reading about you and Tripp has made me a better mommy, more appreciative of all of the beautiful things in life, and brought me closer to my children. I thank you for that.

    I hope and pray each day that your baby has a good day.

    As far as the negative posters...wow. They clearly need prayers almost as much as your family does. Or a Groupon for empathy.

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  76. You are the best mommy in the world and Tripp is so lucky to have you. SO many prayers from everyone in my home to you and Tripp. You have inspired me in so many ways and I thank you for that. XOXO

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  77. Courtney,
    You are the bravest mom that i know! I pray for you & Tripp and wish him comfort & freedom from pain. You are the greatest gift for Tripp!
    LeeAnn

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  78. Courtney,

    Shame, shame, shame on the ignorant people that have the NERVE to say such nonsense. For them, I will pray. I will pray that God helps them learn compassion. I apologize on behalf them! You are the most amazing mother EVER! Your devotion, unselfishness, and life's work are evident. Tripp wouldn't trade you and neither would we (those who love you and Tripp from afar). I pray that God brings you peace that surpasses all understanding. I pray that God takes Tripp's pain away. I pray that when it is Tripp's time to meet the angels, IN GOD'S TIME, at that moment, you know that you've done ALL that you could possibly do. Your story is amazing! Tripp has touched SO MANY LIVES! That smile! Amazing! Peace, peace, peace. Love from Texas **BTW, the kids are working on the blanket!**

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  79. Hey Hun
    I have never commented before but have been reading for a long time now. I had a blog I kept while my husband for a research based stem cell transplant at Duke in 2008 for Scleroderma. I kept it to keep everyone at home posted for the 6 month we were there and well it became bigger than I expected. My husband died in January of 2009 he was 26 or son was 18 months old. I am telling you this because I had to shut my blog down from the 2-3 cruel comments I would get about our choices. Everyone seems to know how to live your life better than you do especially in times of crisis.........but they are wrong, the only ones that knows is you and your supports. I admire you for your strength and for confronting the uneducated, I was too weak to do that and wish I had your strength. Keep doing what you are doing loving that baby of yours......Hugs to you

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  80. You are such an inspiration, Courtney! Tripp is so blessed to have you as his forever cheerleader and caregiver. I am so emotional over how much I admire your strength!

    KK

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  81. Tripp is truly lucky to have you as his mom. You have more strength and courage than anyone I know. And Tripp is an amazing little boy. I love, love, LOVE his smile. It is obvious that the folks posting nasty comments have never had a child much less a sick child. I cannot even read your posts without tears in my eyes and my heart breaking. May God Bless you. Prayers and love to you both.

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  82. I rarely comment but pray for Tripp and you daily. You are such a beautiful example of God's love and devotion to us in the love you have for Tripp. Praying that Tripp will be able to get adequate pain relief. Again, thank you for sharing him with us. HUGS and prayers from SC!!

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  83. With every Blog or Facebook post I read, I'm completely overwhelmed by the trials and tribulations that you and Tripp face daily. All I can say is that my admiration for your dedication to Tripp only continues to grow. I tell myself daily that if I can only be 1/10th of the parent you are then I've done a great job. Tripp is lucky to have such a strong person in his corner making his decisions for him. He knows that you have his best interests at heart and only want to make him happy. I promise that I'll continue to pray daily for peace, comfort, and the strength to make these gut-wrenching decisions. We're here standing behind you all the way! May God bless you, Courtney and Tripp!

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  84. Thank you so much for keeping us updated. I look forward to reading every word that you have to share.

    You are so good to forgive. You are right, they don't know what it's like. Judgement is not their job, it is His.

    God bless.

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  85. You are truly amazing and selfless. Do not listen to those ugly comments. Tripp is so lucky to have such a strong and loving mommy! I wish you and Tripp comfort and peace.

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  86. I want you to know that I think about you and Tripp every day. I wish there was something I can do to help. I am sending positive thoughts and prayers your way. Tripp has touched so many lives including mine. I share his story with my four young children, even my 21 month old. He brings me my iPhone and says "baby"...he wants me to show him the pictures of Tripp. One of the things I am thankful for this thanksgiving is getting to know Tripp and his story. You are an amazing mother and have made the best decisions for your son. Tripp is a little Angel here on earth. I will continue to pray for you .

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  87. Courtney, please do not let people like that get to you don't even give their hurtful comments a second thought. You are an amazing mother and I would do the same for my kids as well. My niece has bee battling leukemia for two years now and she had a bone marrow transplant. She'll be 9 next month. I pray for you and your son often and will continue to pray. Never lose faith in God! He had a bigger plan for all of us that we just can't seem to understand or see yet. My heart goes out to you and your baby! Have a blessed Thanksgiving!!!

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  88. Tripp is so beautiful and peaceful in that picture!
    Wow, you have been through so much. I am so happy that you got to try the G-CSF, and meet with the transplant doc. You can be so certain now that you have made every attempt to fight Tripp's EB. My heart is so heavy for you having to make decisions no parent should have to make. I am angry that anyone would question your motives. It is so clear how much you love your sweet boy, and that his pain hurts you to your core.
    You and Tripp are never far from my thoughts.

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  89. Sweet Courtney, I pray for you and Tripp throughout the day. I know that there are no words that I can possibly say to take away any of your pain. But do know that because of you I know about EB and I am spreading the word to others. My son loves to watch Tripp's drummer boy videos and dances along to Tripp's beat. Each night when I lay my son down and we say our prayers, we say one for baby Tripp. I pray for Tripp's comfort and for God to ease his pain. As a mother, I admire your fight and strength. I would do exactly the same for my baby and would give my life for him if needed. I am not sure why someone would ever post such horrible things on here but you are doing wonderful and anyone who thinks different does not need to respond. Keep your head up and know that Baby Tripp is truly an inspiration and you are too!

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  90. I don't comment much, but I do read your blog faithfully. I just wanted to say that your strength is incredible and inspiring. I could never imagine what you are going though, but please know that my prayers are with you and your amazingly strong little boy.

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  91. Courtney, you and Tripp are so beautiful and strong. I can't tell you how much of an inspiration you are, and how much I am hurting for you both. I can't imagine your pain, but I just wanted you to know that I am praying for you and Tripp.

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  92. I have no comment for the horrible comments that have been made about you, Courtney. I wouldn't want to sink to their miserable level. Trust in the knowledge that you and Tripp are so very loved and valuable. God has big plans for you and your precious angel.

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  93. Dear Courtney, 21 years ago my little 6 year old son became very ill. He somehow acquired meningitis (HIB.) After less than 24 hours in PICU, in a full blown coma, on a respirator and with a feeding tube, I made the heartbreaking decision to have the machines turned off. The EEG showed no life. I rocked and sang to him as his heart kept beating...until it stopped. I am not trying to make you sad or think about the future, I want others to know that we are moms. We are not Gods, we cannot predict anything. We CAN love with our entire being. I believe you have made the best decision for both of you. Holding him and loving him through all of this is the best thing that you can do. I pray that you and Tripp have a beautiful life, albeit short; for it can never be as long as you would want it to be. He has a purpose, as do you. He is a strong little boy and you are one of the strongest mommys in the world. It is sad that he will leave you, but you will have an angel watching over you until you meet him once again. If you ever need to talk, please know that you can contact me...anytime. Please whisper to Tripp that T-Ron will love to teach him to ride a bike. Much love, CJ

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  94. I am so sad reading what you are both going through. I can't imagine it and I admire you all more and more each day for your strength and love. Your beautiful baby boy has changed my life forever and I'm praying harder than ever for him now.

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  95. God was with this angel before he was ever born, and He has remained by his lil side every day that he's been in your life. I pray daily for you and Tripp. I pray for his comfort and for you peace. I admire your faith. You will understand one day just like you said. The bible says "Yea though I walk THROUGH the valley of the shadow of death I will fear no evil. We aren't to pray to get out of the valley just the strength to get through it to the other side. Hugs and Love

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  96. I pray that a children's hospice group will come to your aid. To give comfort and care to you and Tripp. All of you need support at this time. Please Lord, give the people who have the time to this little family who need love and care.

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  97. Courtney - you are a true inspiration. I have only known your world for 3 months....the 3 longest of my life. No one teaches you how to care for a sick child and no one understands the reality of EB unless they live it. I feel truly blessed that I was able to meet you and Stephen - thanks for agreeing to meet Mandy and I and our sweet baby girl Quinn. We will say many prayers for all of you and mysteries that God continues to bring to light for all of us. Keep the faith, stay strong and love that little man!!!
    -Marc Seymour

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  98. I don't know how you do it. I just got done taking care of a sick child who didn't get out of bed for 2 days and thought that was hard. I can't imagine being in your position, and it truly saddens my whole heart that any child has to live like this. I don't know what the reason could possibly be, but God us mindful of you both. Tripp is lucky to have you for a mom. I hope and pray for comfort and peace for both of you.

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  99. God bless you Courtney, you are amazing! I pray for your sweet lil man everyday. What a little Angel on Earth.

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  100. I know you know this but I just have to say no one has the right to judge you when they haven't walked in your shoes. You are so right that they have no idea. There can't be much worse than watching your child suffer and you are doing it with grace and advocacy for your child. He is blessed you are his mom.

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  101. You are such amazing women. Your little guy is so blessed to have you as his mom. I can't say I know exactly what you are going through, but Year ago I found out that my little guy had a bad heart and had to have open heart surgery at 3 weeks old. He is now 15 months old and has gone through 2 open heart surgeries. I would do anything for my little guy. When he was in the hospital recovering from open heart surgery and in pain, I wish I could of traded him places. God only gives us trials that we can handle. I am so thankful for our father in heaven and the blessings that we receive from him each and every day. I pray that your little guy can feel comfort from his pain and that you and your family can also feel comfort as well. I know that when your little guy returns to his heavenly father that he will praise you for being such a wonderful mom to him and I know that you will see him again with our heavenly father and he will be normal. Thank you so much for sharing your blog with every one. I would like to share my religion with you http://lds.org/?lang=eng. I don't want to offend you or any one else. But I just feel in my heart to share this with you. Thank you! :)

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  102. I am praying for peace of mind for you and I am praying for Tripp because I know that he is a fighter. Plus I never give up on a Miracle and that is what Tripp is. He amazes me each and every day. Keep your head up and don't worry about what others say.

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  103. I have been following you and Tripp since you began your blog. I keep you in my prayer book and on the prayer chain at church. My heart is breaking for you and Tripp.

    I am so sorry the ignorance of some brings such horrible comments to you. You are the best mom ever, and Tripp is so blessed to have you for his mommy. My prayers go out to these people in a hope they can soften their hearts and show compassion.

    I am happy to hear you have someone special in your life, to be with you and Tripp--I am so happy you have been blessed with love.

    Blessings, Mari
    http://whathappenswhenthedaughterbecomesthem.blogspot.com/

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  104. Blessings to you and your beautiful sweet strong little boy.

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  105. My heart is breaking for you tonight. This is my first time reading your blog, and I bawled for you, and for Tripp. I bawled for you because you write with such an open heart, and anyone reading can feel in a second the love you have for your little guy --- and I so wish there was something SOMEONE could do to cure him. I cried for Tripp because I feel so bad for what he is going through, and I feel it's so unfair. God bless you (I do not say that often or lightly) --- both of you. Thank you so much for opening your heart to strangers and for sharing what you are going through. You are doing the absolute best thing any mother could do for him --- dedicating every moment to him, holding him, smiling with him, loving him. I will keep you in my thoughts daily and check back.

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  106. You and Tripp are continually in my thoughts and prayers. I feel absolutely heartbroken that BMT is not an option to help save Tripp's life. God's plan is hard to understand but I know He has a plan for Tripp. It is excruciating to see him in this pain and I wish I could understand why He would have an innocent child endure this. I can only hope that He is holding Tripp in His arms through all of this. I know that his passing will be bittersweet and I hope that you receive comfort knowing he is out of pain and in the arms of our Savior. Prayers and hugs for you and Tripp!

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  107. She has a very hard road to travel hopefully none of us will ever experience. She always let's god shine through. I'm sorry to hear ignorant people have had to say some bad things. Hopefully she is educated a few with her post today. I admire you strength Courtney and Tripp. You have been showing all of us how we should trust in god always. Praying for you and all the uninformed people. 

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  108. I just started reading your blog and I am overwhelmed at what an amazing Mom you are!! I am praying for you and Tripp and praying that God will guide you in every step you take.

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  109. Hi Courtney and Tripp,I have been reading your blog for a while now and for the life of me I cannot beleive that someone can be so hurtful!! You are trying your best to make Tripp comfortable! If one of my children were that sick I would be doing what you have done!!
    You are a wonderful mother with a very brave boy!! xxx
    Liezel Warner - New Zealand

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  110. Dear Courtney,

    I have never identified as an especially god-fearing or religious young lady, but I know that Tripp's existence and your unconditional devotion to him as it is relayed to us through your blog has brought me closer to God.

    You have made me understand that suffering, as difficult as it is sometimes to wrap my mind around, is actually God's greatest instrument of love.

    For how stressful your situation is, you write to us with such clarity and confidence. I appreciate your wisdom and honesty in all that you share.

    You were the perfect woman for God to choose for this heart-breaking job. I will always think of Tripp now when I see Elmo, I will always remember his remarkable spirit and percussive talents!

    Also! Congratulations on having a special man in your life (other than Tripp, ha). You deserve all the happiness in the world and I wish you a bright and loving future together.

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  111. There are no words I can type that haven't already been posted. I can't even comment on the negetivity you read from people who are so incredibly misguided. I've been following your blog for quite a while. I've shared tears, sleepless nights, LOTS of prayers, and held my breath through every update. I can't even imagine how much you really go through in your daily walk with this miracle child. I've had a hard life, and known pain but nothing compares. I just want to offer a word of encouragement... We already know that Tripp is here for a reason and that he's an incredible, life changing example of strength and courage in this world. But so are you. God knew exactly what He was doing when He entrusted this amazing baby to you. You are the perfect one to care for him. Every time I read your blog, I see God in you. You so fully demonstrate God's love for His children in your love for Tripp. Your love is selfless, unconditional, and self sacrificing. You've endured more in this journey than most people can handle in a lifetime, and yet the desire of your heart is just to make Tripp's life better. In it all you keep your faith, you still manage to smile, and you appreciate every precious moment with your baby. You're a true hero and God will continue to bless you all your days, as He's blessing Tripp by giving him the best mommy possible. I've prayed so many times for Tripp's healing and for comfort for you both and I will continue to do so until he's either healthy in your arms, or healthy in heaven. My heart is forever changed by your story and your lives. Thank you.

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  112. I've been reading your blog for the past few months. I've never been touched like this ever before. You and Tripp have won my heart. I believe after watching my elderly mother suffer recently that the family suffers as much as the patient. God has one hand on you and one hand on Tripp. I pray with everything I have that you will both be comforted, that Tripp will be comfortable and as pain free as possible. There is no greater love than the love you have for your son and he for you. I realize my trials are nothing in comparison Tripp.
    Nothing lasts forever, not even pain. The most important thing we have in this life is LOVE and families.
    God bless you both with all that you are in need of at this time.

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  113. Courtney, I kind of figured youwerd checki.g out BMT. I'm so sorry things didn't work out. I think you are doing things just the way any good mother would. I pray everyday for Tripp and you. I'm happy to hear you have a boyfriend, someone to take care of you while you areloving Tripp.
    Love and prayers from Taylors, SC

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  114. Courtney, I'm like many others, I don't know where to begin. You are a very strong, caring, and loving mother. Tripp is very blessed to have you as a mom. I pray for y'all everyday. As I've read your story, I'm blessed Tripp was placed into the right family. God knew what he was doing when he blessed you with Tripp. You have been such an inspiration to me. It takes a strong person to do the things you do daily and never complain. God has a special place in Heaven for you also. Continue to stay strong because you have a lot of support out there. We all will continue to help you pass the word on EB and fight for a cure. Keep your head up!!!! You and Tripp are so loved. I have tears in my eyes everyday I read your updates. Prayers and lots of hugs for You and Tripp

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  115. John 14:27 Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.

    As always, your post moved me. Your suffering is beyond what I can comprehend and I won't pretend I understand. I will tell you that it appears you are moving into a new season. In this deeper, darker, but richer place, I pray that you will harken only to God's voice, moving boldly closer to Him minute by minute...breathing in holiness and love. We command all false voices fall away until you and Tripp and your family are cocooned in a peace that passes all understanding. Press in, sweetheart. Let the rest fall away.

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  116. I am in awe of how strong yet humble you are. God is holding you close as you hold Tripp. I am praying for you guys this Holiday Season. Tripp you are my hero. When you go home - your mom will be okay. We will hold her up in prayer. We will hug her tightly as she longs to hold you. We will support her on the journey to cure EB. We will LOVE her because of her LOVE for YOU!!!!

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  117. Courtney: First and for most you are an amazing mother and the best picked mother for Tripp. I found you a few years ago through Jonah's page. I am sorry people are ugly and don't realize what they are saying. I think they just want his and your pain to stop and for him to be finally at peace whether it is her or in Heaven with God.
    Tripp is an amazing little boy that puts a new definition to fighter, determines and strong. He could be a poster child on what it means to be a good sport because of all he has been through he has been a wonderful child. No parent wants to see their child suffer or in pain and I know how I feel with the simple pain I see in my 3 children so I can only imagine what you feel everyday.
    I wish there was more I could do or stay besides I pray for Tripp so he can be pain free and a happy healthy little boy. I pray for you and your continued strength while you care for you son. My final pray is for them to find a cure for this horrible disease so no child has to suffer with this again.
    I hope you have a wonderful Thanksgiving and holiday season. HUGS to an amazing mom who sure deserves so much more time with her son and for her son to be healthy.

    Anne Marie

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  118. Dear Courtney,
    You are facing things that no parent should ever face. Your decision to keep that sweet boy comfortable and loved are the most unselfish things, the hardest things for a mama to do. Please know that I am praying for you and Tripp and your family...praying for peace and strength.

    An Ohio Nurse

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  119. My heart is breaking for you. I am so very sorry. The Lord will help you both through this and give you strength to endure it. You are such a beautiful person and one of the best mothers in the world. I am always praying for you and Tripp.

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  120. Courtney I think I say this everytime I read your post, but you are the bravest Mommy I know (or have read of). Tripp is very lucky to have such a great person careing for him and loving him! I can't even imagine what your days and nights are like knowing there is nothing you can do for your sweet baby boy! Keep Strong Courtney, I am praying for you and Tripp.

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  121. You are the definition of an angel. When God gave Tripp to you, he definitely knew what he was doing - as most mothers on this earth (including myself) do not have the strength that you have. I cannot even try to imagine the hurt and pain you face every day. Somehow, by the grace of God, you do have a "peace that passes understanding" - even if you don't see it - I see it in the amazing words you write. I hope you know just how lucky Tripp is to have you. You truly are amazing. God bless you!!!

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  122. Courtney and Tripp-

    There is nothing to say that has not been said before, but we absolutely adore both you and Tripp and have been holding our breath for an update on him. I wish so much that there was something modern medicine could do for your precious boy. If tears and love helped, he would have been cured so long ago by this world of people who would do anything to make him better. I am so glad you have this support system around you in your family, the medical community, and now this person who has come in to share your burden, and your joy. I cannot comprehend how impossible this time is for you, and thank you so much for sharing your family's story with us.

    So much love,

    Sara and Wendy

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  123. Dear Courtney, I'm so sorry for the sadness you've had to endure, and the undkindness of strangers. Ignorance knows no boundaries. I want you to know that you and Tripp have been a blessing to me. Because of you,I've had to re-evaluate and reset my shallow priorities. I've prayed for you both and I've marveled at your response to the hardships you've been given and your testimony to the Grace of God in the midst of hardship. I wish every mom loved her child as you do.
    We continue to pray for you and you praise God who continues to give you hope and grace. My eldest daughter is expecting our first grandchild because of our knowledge of Tripp we have discussed our hope that no matter who this child is or what burdens he may have that God will equip us to deal with them as you have. God continue to bless you Courtney and I pray He will continue to give you and Tripp comfort in the days ahead.
    Thankful for your praise, Debbie

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  124. My heart breaks for you and I am so sorry that you did not get the news you wanted to hear (however, I sense getting the "permission" to let go of the BMT may have been a bittersweet relief).

    Dr. Tolar sounds as though he was sent straight from God to help you process this and comfort you.

    As for that idiot who wrote the mean words, I am sure she would also fight to the death to try to help her kiddo. You are right, it's not your decision... it's Gods.

    I have been praying for Tripp for months now. For healing for comfort, for a positive change. I think I will start focusing on comfort- for Tripp physically, and for your heart to have strength and healing.

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  125. p.s. and I agree Stephen is heaven sent. Not only to help you through this journey, but also to be there with you with whatever may come after the journey is done.

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  126. Just wanted you to know that I was telling my family (husband and two older girls)about you and Tripp last night and my girls wanted to see your blog, so I showed them after we spent time in prayer for you and precious Tripp this morning. Hoping today is a good day for you both!

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  127. My dear Courtney, I do not know you and Tripp personally. Yet it feels like you are one of my very closest family members. I never prayed for anything special before in life, but now I pray every day, even several times a day - for Tripp. I love him as if he were my child and I suffer in my mother's heart when I read about his painful existence. It makes me warm inside to read how you love and care for your son. Day in and day out without wavering, you are there for him to give him the safeness of your voice, your hands and your warmth. Tripp - little boy who is as old as my son Leo has changed me inside and out. He has made ​​me a better, more grateful human being and a mother who every day thank my children because they chose to come to me. Nothing is obvious anymore but everything is love in the end. Tripp is loved and blessed all around the globe. Please give Tripp a butterfly light kiss on the forehead from me. Lots of love, Asa in Sweden

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  128. Dearest Courtney--I am speechless. You are an amazing testament of being a Mother and a Christian. I continously pray for strength for you, your family and that sweet angel Tripp. I pray that you have a wonderful Holiday season and can continue to love and hold that baby boy until the Lord above decides that it is time for him to come home. You are precious. Wishing nothing but the best for you and your future. God Bless You!

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  129. Tripp and Courtney,

    You have my heart, my hopes, and my dreams. May your peace come gently, and your love flow freely. I hope your heart can feel the love and support that is surrounding the world for you both.


    Dear Ugly commenter,

    Count yourself lucky that you have yet to have to watch a loved one suffer needlessly, while you are helpless to do anything but stand by and watch.

    A selfish parent would keep all the joys and trials to herself. Courtney has graciously invited us into her life, her home, and her tribulations. She blessedly allows us to share in her ups and downs with her gift from God.

    You owe her your gratitude, and your thanks. Because of Tripp and Courtney, thousands and thousands of people are now aware of a disease, that we otherwise wouldn't have even dreamed of. Because of Tripp and Courtney, that awareness will hopefully speed up funding and ideally a cure. If even one less child suffers because of their advocacy, direct or indirectly, then Tripp wins.

    A real mother would walk through the fires of hell for her child. I think we can all agree that Courtney has done just that.

    ~Cheryl

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  130. I am honestly speechless!! You are an amazing woman and mother! Tripp is beyond blessed to have you as you are beyond blessed to have such an amazing miracle, Tripp. I pray that you can enjoy Tripp's time here until our Lord and Savior calls him home to heaven! Gob bless both of you and I will be sending many prayers your way.
    Much love!

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  131. You are an amazing Mother & woman. Sweet Tripp is always in my prayers♥

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  132. I am shocked and disgusted at the audacity of people. You handled that with grace and beauty. Kudos to you. Love you both.

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  133. When Jesus decides it is time for T to come home, remember that he is no longer in pain. I can't imagine going through what you are going through, You are an angel.

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  134. Courtney,
    I wait on the edge of my seat for your posts. Hoping and praying that Tripp has a good day. As a grandmother of 6 healthy and beautiful grandchildren I am always reminded that by the grace of GOD there go I. You are a hero in my eyes as much as you wish no one would have a reason to say that to you. Tripp is blessed that he is YOUR son. I believe that JESUS has a rocking chair also. You and Tripp will be in my heart and prayers for ever.

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  135. All I have to say is, you're the least selfish mother I've ever known of. Your baby is fighting for his life and will go when it's his time; I'm not sure why others don't understand that it isn't YOUR decision when his time comes. Unfortunately you can't reverse the hatefulness in people. You're a wonderful person, as is your son, and he's lucky to have such a devoted family to love and care for him; I'm not sure the same could be said for some parents. I think you're doing a great job and wish some parents could take lessons from you on love - the world may be a better place if they could.

    Keeping you, Tripp and your family in my thoughts.

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  136. Continuing to pray for you and your sweet boy. I'm sorry that on top of everything else your family has to deal with you also have people who are less than encouraging. I pray that they think about what they've said and learn to be more compassionate in the future.

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  137. Courtney: We all love your son dearly, and you of course love him the most.

    But, what if the miracle we all are waiting for is that Tripp will go through and survive the BMT and get a good life? You know how strong he has been over the past years. With all the prayers following you.. this CAN really be inside of him.

    But I don´t know if this is the best for him. I´m thinking selfish thoughts. You are thinking the bravest thoughts a mommy with a suffering child has. You are an angel as a mother and Thipp couldn´t have made a better choice of mother.

    Love you both.

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  138. I haven't been a reader for long (I recently found your blog from a friend's blog) but I can't say how much Tripp's story has touched my life. And your endurance as a mother is so encouraging. I can't begin to put myself in your shoes, but I could only hope if I ever was that I'd be as God-searching as you are and would have the strength that it seems you have...which can only come from God. Anyways, I just wanted to let you know that I think about y'all so often, and your little man is precious, such a fighter and a gift!

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  139. Courtney,

    You and Tripp (and your entire team) are amazing in every single way. And that prayer? Perfect words. Your strength is inspiring.

    P.S. I've followed your story for quite some time and hardly ever comment. I had to leave something on this post. Good for you and God has blessed you with inspiring strength among other things.

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  140. It is so easy for people to get caught up in life, I know lately I have been stressed about holidays and money and everything else that comes with this time of the year. Every time I read your blog, reality sets back in and reminds me that life really is not that bad. I'm not sure how one person can have such inevitable strength and passion but I applaud you for all that you do. For facing all the challenges and leaving it in gods hand to make the right decisions. I am in awe that one would say such things without have the smallest idea of what you go through on a day to day basis. NO ONE would want this for their child, but you make the best of an awful situation and that is really all that you can do. The world is praying for you and Tripp!

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  141. I LOVE this-

    "And P.S. I forgive you for saying the ugliest things I've ever read in my life.
    And I will pray for you."

    and im so glad to have an update because like a lot of people who check in on you.. I check often. this story about Dr. Tolar makes me love him even more.(ive been on the cure EB train since I saw a documentary so many years ago) I adore your conversation with him. and I am behind you 100 percent. im a stranger i know. but when you learn about tripp you dont really feel like a stranger after a while. how can you not care? ... I think your choices are perfect. you are doing things right. you are supported. whatever you choose. because you are coming from the right place. and man... i would want you as my mom. and i mean that in the least creepy way possible. but you are a warrior. and you are the perfect voice for your child.

    And also I think you will love this verse. it screams your name. and tripps. and your mothers. and everyone involved. who is living out their faith so beautifully-

    Exodus 9:16
    But I have raised you up for this very purpose, that I might show you my power and that my name might be proclaimed in all the earth.

    This very purpose. and you are living that out. it is amazing to stop and recognize what is going on in your life as what you are raised for. this very thing. That is a comfort to me. I hope it comforts you. and empowers you.

    xo

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  142. Praying for you and your sweet boy, that God will comfort you both and give you peace.
    "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

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  143. I'm so sorry that your sweet angel is suffering. I know that God knew exactly what he was doing when he sent Tripp to you. Tripp is one lucky little guy to have you for a momma. You do everything you can for him and that is all anyone could ask. Ignore the negative comments you get, some people are just stupid. God bless you and your family. I pray the Lord will guide your decisions to help Tripp the best ways possible.

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  144. All I can say is that God gave Tripp the best Mommy ever and you the best little boy ever! May God continue to guide you through all your difficult decisions. God bless you and your family who have made it possible for you to care for precious little Drummer Boy! I will continue to keep you all in my prayers. Thinking of you daily!

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  145. Courtney -

    I've posted on my blog for a Christmas Miracle and prayers for sweet Tripp! Happy Thanksgiving - I know you give thanks everyday for his beautiful self!

    FarabeandJustin.blogspot.com

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  146. So many thoughts with this post. First off, kudos to you for addressing the negativity. It breaks my heart to think someone would say something like that to you when you endure as much as you do. Keep your faith and keep doing exactly what you are doing for your amazing little boy. I'm so sorry to hear that Tripp isn't a candidate at this time for those treatments. I truly believe, as you do, that God's will is being done, no matter what happens. And lastly, so happy you've found someone! You've been strong on your own for so long, and even with those close family connections, a relationship like this will hopefully give you even more comfort through the tough times, and someone else to smile with through the good times. Many hugs to you and Tripp....I am praying for your family daily. Happy Thanksgiving!

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  147. Tears are flowing, and prayers are going up. Prayers for comfort for Tripp and for you. God Bless you. You are an amazing woman and Mother! and you are doing the right thing, don't ever let peoples ignorant comments get you down.

    And to the woman who left that ignorant comment, shame on you. If you don't have something nice to say don't say anything at all.

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  148. You, Tripp, your family and support team are all amazing, beautiful people. I have been following Tripp's story all the way from Seattle Washington and I pray for his comfort and your internal peace. Thank you for always reminding me about what is important. Happy Thanksgiving to you and yours.
    -Kari

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  149. My prayers are with you and your family.

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  150. Just amazed by Tripp. So brave. To give smiles even in so much pain. And so, so lucky to have a Mama like you. I am praying for Tripp and you all.

    God Bless!

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  151. Courtney,

    Not even Jesus had everybody comprehend the magnitude of everything he was doing... so don't let these ugly comments discourage you ... I know it's easier said than done, but you're a great mom and has way more to worry about ... there will always be narrow minded people that don't know how blessed they are ... on the other hand there will be always the opportunity for you to continue the mission Tripp started ....

    Lots of strength to you and everyone around you ...

    Warm hugs...

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  152. Hi Courtney,
    I continue to be amazed by your love and dedication to your son. You're amazing, girl!! I think I missed the ornament info...what kids of ornaments are you looking for and where do we send them?! Would love to send some love your way!!

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  153. You and your baby (I can call him your baby right? My 2 year old will forever be my baby ;) )Tripp are truly an inspiration. My 22 month old nephew passed away at home from a chronic illness called IPEX. Although it was a different disease my BIL and SIL had to make difficult decisions like you. They chose not to do a BMT because it was not successful for his disease. And so we kept him comfortable at home until his passing. His little life changed mine forever. And your story is changing many people forever as well. Now, for the naysayers...Taylor Swift said it best... "People throw rocks at things that shine." You and your little man shine. Your an inspiration.

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  154. You are amazing! You and your precious Tripp have touched so many lives and hearts with the story of Tripps life. You are truly a blessing and an inspiration with your unwavering faith and courage and your ability to see the blessings in your life rather than focus on the negatives. I truly don't know how you do what you do. I pray for you both, cry for you both and think of you both often. Thank you for sharing your life with us and Thank You for helping me to be a better mom by taking notice of each blessing in my life (big or small) and not taking a single moment for granted. Thank You!

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  155. I'm terrible at writing comments about anything, but I feel like if there is a time now is it.

    You are a pure wonder.

    And.

    Tripp is indescribably phenomenal. Seriously. Both of you. I tried to find words for what I wanted to say to you, but I really couldn't. I just wish I could walk up to you, give you the hug I'm sure you need, and the amazing 40 year long massage you deserve.

    And you suck mean person. >:( How could you say something like that? I dare you to have the same dignity and grace this woman has.

    Tripp, you're an inspiration, little one. I <3 you without even knowing you.

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  156. Courtney, My heart breaks once again for you & Tripp. No mother should ever have to make the decisions you have to make but thank GOD that Tripp has you. I'm blessed to know you & Tripp (thru the internet of course). I'm so thankful that you are sharing your lives with us. You have touch so many lives, so many people are now aware of the "monster" called EB, thanks to you. Tripp's little life is so BIG. I pray for you both all the time...that's the one little thing I can do. I pray that our dear Blessed Mother Mary will cradle you both in her gentle arms and ask her dear SON to comfort you and Tripp, to take away all of his pain, and to give you peace and joy. And if it is GOD's will to completely cure Tripp and all the children with EB, then please dear Lord do it soon. AMEN~ God bless you & your family, Kathy Guillot, Carriere, MS

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  157. I have to say YOU ARE AN AMAZING MOM... Tripp is a lucky little boy to have you as you were so lucky to be given him. I could really go off about these people who are clueless but I would not want to lower myself to their level. You and your family(congrats on your B-friend) are all amazing. Hope you all have a Great Thanksgiving.

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  158. Courtney - I hope the love that all of us good, caring people are sending your way will somehow make a dent in the horrible comments that the "monster" wrote. All us Moms are connected by the love we have for our children and the love and sacrifice that you have given Tripp is like no other! I only hope that I would be able to live up to your example!! Please know how much we care about you and Tripp and that you are in my thoughts and prayers daily. Although I don't know you personally, I feel like you are part of my life. Sending you and Tripp a hug!! Sharon

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  159. I've never commented before. But I pray daily for your sweet Tripp and for you. You are an incredibly strong and brave mother to an incredibly brave and strong little boy. May God protect you both and bring you peace in this time of pain.

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  160. Wishing you and Mr Tripp and your entire family a blessed and Happy Thanksgiving. Thinking of you all and keeping you all in my prayers <3

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  161. I sit here in tears because I wish I could be more like you. I wish everyone had your faith! I will continue to not only pray for your wonderful little guy but that you continue to be the strength he needs. I also pray that this little boy changes the hearts of everyone who knows his story. Prayers!

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  162. courtney - you are the type of mother all of us pray and strive to be! praying for your perfect (what a beautiful post), sweet baby and for strength for you!
    god bless y'all!
    susan
    w-s, nc

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  163. I was so sorry to hear that People would actually leave you ugly comments and I am so glad that you have set them straight. You are such a loving Mother and Tripp such a precious boy. You and Tripp continue to be in my prayers.

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  164. I had never heard of this disease. I however think you are great mom. I can tell by your words that you truly love your son. I'm sorry people don't understand what is going on. Sometimes I wish people would just keep their thoughts to themselves. I wanted to let you know that I will be praying for you and your beautiful son Tripp. God Bless!
    Amanda

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  165. Courtney, I can't tell you how much I wish words could heal, both Tripp's body and your heart. I'm so sorry that people say such ugly and hurtful things to you. Know that for every ignorant jerk saying those things, thousands more are praying for you and Tripp. Your faith and your strength amaze and inspire me. My heart breaks for you and Tripp, and I cry every time I read one of your posts. I find myself thinking of Tripp several times throughout the day, and I use each time as an opportunity to send up a prayer asking for comfort for the little man. You and Tripp have had such a strong effect on me, you've tought me about courage and selflessness, grace and unconditional love. I'll be including you and Tripp in the list of things I'm thankful for this Thanksgiving. May God grant you both comfort and strength.

    Much love to you both!

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  166. Honey, you can fix ignorance, but not stupid. I have been praying for Tripp and you! He is adorable, and he is perfect, absolutely perfect. No you are not selfish not at all. I lost my first son to sids at 5 months old and now I have another son who is terminally ill. So I understand exactly what you are saying. I just want to let you know not just anybody can be a parent to a medically needy or terminally ill child, God does not just bless anyone with this gift. This is a true blessing and honor to be a parent to a special child, and know you are your childs advocate, you are his voice. You are doing a great job in my eyes. I'll be praying and thinking of you and Tripp. Cute lil guy :)
    Hope your family is able to enjoy Thanksgiving with Tripp. Praying for you and thinking of you and Tripp. Love that's lil guy <3

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  167. You are an unbelievable person. And I do believe your child is a special angel here on this earth. He is beautiful and amazing. I'm praying for you two.

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  168. Oh how I pray for comfort for Tripp. I'm so sorry that he's been hurting so. Some things maybe we will never understand, maybe we just have to accept. Please don't listen to those negative comments, you are his mother, you are the one first and foremost with his best interests at heart. God forbid they have to walk a mile in your shoes, then they may really know what it's like....

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  169. Courtney,
    I have read most your blogs and everyone puts me to tears. I have never responed as to come up short for words that are comforting to you. You are one amazing mother and Tripp is one amazing child. God is using you and Tripp in so many ways and I want you to know that you have touched so many lives. My Mother died holding my hand when I was only 13 years old. She had a bone marrow transplant and it did not work. Her last words were God is with me, I was so scared of death yet when the time came I felt so much peace for her. God does amazing things. I am now a mother a five and also have a husband who went through cancer. Out of hard times and mcuh love good thigns do happen in time. It is so hard to understand why God would have Tripp suffer however I know he is holding him close in his heart. You are so amazing as a mom, If I could just give you a big hug right now even though we are strangers I would. Know that hugs are sent your way from MN. And know that at our dinner table we have a picture of Tripp and we pray as a family of 7 for him and you everyday. I also want you to know don't worry about what others say "Forgive them for they know not what they say Lord" You are doing just what God wanted respecting the life process and his big plan for Tripp's entrance into his Kingdome someday. Please know this, you and Tripp are both loved and prayed for by many strangers that you don't even know are praying for you. After suffering heartships over the years I have found this one quote to bring me peace and it is written on one of my walls in my home as well: It is simply this- "Rejoice in Hope, Be patient in tribulation, and be constant in Prayer, God will bring you peace!" May God bless you and Tripp and give you peace in your hearts. Love Mrs. Sara V

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  170. I don’t know you or your precious son but I think of you daily. I know now that there are Angels on earth. You and Tripp as well as your mom and support team remind me of that when I read your blog.
    I just wanted to say how sooo sorry I am that you and Tripp are going through this pain. His may be physical pain but as a mom I cannot imagine the emotional pain you are going through daily too. I wish I could just give you a big hug. Prayers for you both.

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  171. Courtney, I have never posted here before but I have been reading your blog for some time.

    Please know, that whatever happens, you and Tripp have changed peoples lives. Tripp is a miracle, and a soldier of God, and he has done (and will continue to do) amazing things for the souls of others. Tripp is a saint.

    He is so blessed to have you as a mother, and God chose the perfect person to hold and rock and fight for this sweet boy. May the Lord give you strength for what is to come. And may you find peace.

    I will pray for you and Tripp.

    Also, and I think this is important to say, I really, truly, 100% believe (beyond a shadow of a doubt) that Tripp KNOWS all that you have done for him. He is wise Courtney, he has been blessed with you as his mother for the duration of his journey here and he KNOWS that he is lucky to have you. He may have even helped to choose you as his own. He loves you with every fibre of his being, and he knows how much you love him. He knows of your strength and your sacrifice. He knows Courtney, he knows...

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  172. Courtney, I have to tell you that both you and Tripp have made such and impact in my life. On days that my two healthy, fighting, whining children are on my last nerve I can't help but thank God that they are well and able to tear my house apart. When one of them is ill for a few days or I'm finding it particularly hard to cope with their various food allergies, I can't help but to thank God that they are able to eat food at all and I know that that measly little cold will soon pass. I am a very blessed woman, but my being just wants to find ways to complain about my life. Since I have heard your story and read your blog, I stop my complaining and praise God for his blessings. So I am truly indebted to you and your family. I continue to pray for God to make Tripp comfortable and limit his suffering. Do know that Tripp does serve a beautiful purpose in his trying life and you both send the world such a beautiful message of love. AND you have got to be the best mother in the entire world, my new role model. I hope your family has a blessed Thanksgiving and I guarantee I will be counting all of mine. Lots of love and prayers...

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  173. Courtney, I have been reading your blog since I first heard of Tripp's EB through Patrice's blog about Jonah. I have smiled, laughed, and cried reading your posts and watching videos of your darling little man. Every single time I see anything Elmo I always think of Tripp. I can not imagine how you must feel, but please know that you and Tripp both have touched my life as well as the lives of so many others. You have one amazing little angel, that we all pray for daily and love dearly! May God bless you and give you and Tripp comfort. Happy Thanksgiving to you and your family!

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  174. Courtney,
    I am a mom of two reading this in the middle of the night as so often happens. Thank you for the updates. I, like so many others, think of and pray for Tripp very often and I am always thinking of him and you and wondering how all is going - hoping and praying so hard for you both. No doubt Tripp is a miracle. No doubt you were specially chosen to be his mother and his voice. God is working through you both. Tripp is a very very special and blessed boy - his strength is beyond words. I cry each time when I read of his pain - it does seem so unfair. why god? but goodness and love is coming about in the world because of you and tripp. he is a SPECIAL SPECIAL MESSENGER OF GOD. i will continue to pray for peace and comfort for you both. And like so many others, are supportive of you in whatever decisions you make. I think you are on the right track because everything you do or think is out of the purest love.I think what the previous poster said is spot on too - Tripp knows...he knows of the magnitude of your love. Have a blessed Thanksgiving with your special little man and your new man (so happy for you to have the extra support!) and your family. Hugs to you and the lightest of kisses for Tripp. Praying for strength, comfort, and peace for you both. Yours in prayer, Amy

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  175. Hi Courtney,
    I also admit to being a "lurker" I apologize. Like others have said before me, there simply aren't the right words to say. I have been reading Job lately and thinking about all of the dumb things his friends said to him in his time of utter despair. I don't want to be like that. I have no idea what it is like to be you, how hard it must be to get up every day, how much you love your son. I am praying

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  176. I too am a reader, but I don't often comment (on any blog). I just wanted to say that I am thinking of Tripp and you.

    You are an amazing woman and Tripp is so blessed and lucky to have your as his mother. I am devastated to think of how hard it must be to caring for Tripp at this time.

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  177. I just came across you blog and I am sitting here at 7am with tears pouring down my face. I admire your strength and courage and think you are an amazing mother and person. NO matter what happens, you will always be Tripp's Mommy and he will always know that no one in the world could be a better one. I wish I had the words to say that would comfort you and even more I wish I could hug you. No one should ever have to go what you have gone through. Please take care of yourself and stay the beautiful person that you are. I am thankful this Thanksgiving that there are mother's on this earth like you.

    Sincerely,
    Kat Roberts

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  178. Dear Courtney, I am a journalis and mum and live in Milan, Italy. I've been reading your blog for over a year by now. I pray for you and your lovely baby. You are teaching us the real meaning of the word "care".

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  179. It's interesting that you made that statement about God at least making Tripp comfortable, because when I pray for Tripp I don't pray for the EB to go away. I know that's not going to happen, and I say that to God. But God, can't you take his pain away, heal some of the sores at least? Can't God do that at least? I don't know what I believe about God being able to change the unchangeable (like if he could make Tripp wake up without EB one morning, take away a brain tumor, which he didn't do for my dad, etc). I am not sure in my faith, I guess, because too many times I have prayed and prayed and something God could have done he didn't. I don't know about miracles. But I do know this...if he can't take away Tripp's EB, I pray that he takes away the pain, the infection, something to make him more comfortable.

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  180. Just came across your blog. You are an amazing mummy of a very very special angel. Thanks for sharing Tripp's story. May God give you lots of strength and comfort to both of you. Take care.

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  181. I am thankful for having found this blog and for your sharing. I am thankful that you are wise beyond your years in making decisions for your child. There is no doubt in my mind that you and your family have given this sweet baby the utmost in care that can be given. What difficult choices you have been faced with--most of us could not even imagine having to live through an hour of your day and watching your kid suffer as you do during his daily routine. I'm thankful for your supportive family and that you have a significant other in your life. In the end, you have to know that you have done all that you can do for someone you love, and I think that you have done an admirable job of fulfilling that mission. How I wish some of us could take some of the pain away from Tripp and from you.

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  182. Hi There Courtney...
    It has been a pleasure following your amazing story. Seeing Tripp and learning of the strongest little man ever known! He sure is adorable. I just wanted to tell you how amazing you are. I cant imagine going through what you are going through. My little girl had a genetic disease and spent the last month of her life in the hospital on life support. So many people asked how I could sit there and watch her die. Its amazing because being out of the situation I think the same thing. But when you are in it. You have the most incredible strength. and YOU have the most unbelievable strength!

    I am so sorry people have to write such horrible things. I have been left some horrible comments and I seriously hope those people are being paid to do it because what a sad life they live. To be so cruel and judge someone. It seems so out of this world to me. My comments were the opposite as you. I was told I murdered my daughter. What is so frustrating is they dont get it. They have never been in our place. Our situations are so different and I dont want you to think I am saying I know what youre going through at all.
    I am sure its hard for that not to hurt or even sting but please know there are seriously thousands if not millions of people who think you are a hero. That think Tripp is the most incredible little angel.
    We are praying for you. For Tripp. For any amount of relief. You are changing lives!
    xoxo

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  183. Courtney & Tripp~
    I have been following your blog for several months now. There have been several times that I have wanted to leave comments or ((HUGS)) but I didn't have an account so I couldn't. Well, the time has come for me to create an account so I can tell you and your son what an amazing pair you are. It is so hard to even find the right words to say to you. I will tell you that you have changed my life. That poem that you posted in this entry is true to the T! You have given hope to the hopeless, you have shown the ultimate love, you have given faith to the faithless. You two are changing lives for the better. I pray for peace for Tripp, I pray that God heals his pain and yours. May you always feel God's arms wrapped around you and may that give you comfort. Thank you from the bottom of my heart for sharing Tripp with us. Keep beating that drum Tripp when you are with Our Father in Heaven...when I hear thunder I will tell my children it's Tripp playing his drums! God bless each one of you!!
    Sincerely~
    A follower from ND
    Heather

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  184. Hi Courtney,

    I've read your blog for months and I pray for you and Tripp when you come to mind. Thanks for educating me and lots of others about EB. And thanks for posting with such grace and courage. I would have long ago gone private because of comments like the one you shared from that ignorant person. I just wouldn't have the strength to do all you do and also put up with such people. But you do.

    I really took to heart what you said in your Dear EB post. I was convicted by what you said about people complaining about trivial things. I've tried to be much more aware of that in my life. I have nothing to complain about compared to what Tripp deals with daily.

    You're a great mother, the best kind of mother. Tripp is blessed to have a mommy like you.

    I pray God's richest blessings on you and Tripp.

    In Christ,
    Laura Lee

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  185. I do not know if you still have the time to read all of the comments, but I wanted to leave one to let you know that you are not alone in choosing to fight this, and other, horrible, rare, genetic diseases that seek to rob children of a life they will never have. I am 29 years old, and after narrowly surviving a very harrowing experience myself (NOTHING like Tripp!) I have decided to follow the plan that God seemed to be shouting in my ear and become a physician.

    During my training, I fell in love with the study of genetics, and was shocked and terrified to find that so many children in the world suffer from genetic diseases that have not been named. It sickening because, many of these tests are preventable by screening the parents, but many parents do not even know that the monster of genetic diseases is lurking in the shadows.

    I work hard EVERY night to study genetics. While you are rocking your baby, I promise, I am studying. When I am too tired to go on, and I want to quit, I read this blog and do a little more. Tripp is an inspiration to me as a scientist, a Christian, a chronic pain sufferer (how dare I ever complain of pain again??), and a future mother. Please let him now that I am at Berkeley, and I am going to help him. I am taking is call very seriously.

    Also, I have a very wonderful mom, and she has had to sit helplessly by as I face some hugely, physically painful and devastating battles alone. She always told me "I would take your pain if I could." I always thought that was just something mom's said, I didn't think they MEANT it--not really. I mean would she REALLY want this pain? However, the other day I watched my dear sweet God-daughter cry in pain over a temporary injury, and I felt my entire body being torn into two pieces. Nothing I have EVER felt in my life compared to the excruciating agony of watching a child you love hurt. I know realize by taking my pain, my mom would be taking the easy way out. (Not that, that was her intention--of course not). My experience with pain (and I have a lot of it) has been that is much MUCH easier to have the pain than to watch someone you love in distress. Soon though, you will both feel some relief--though it may be filled with sorrow. His pain is temporary, but his message, his hope, his peace springs eternal.

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  186. I also know that when I have faced very dark times, I have often asked myself "How could this be worse?" Then I think "I could have been born to a different mother." Please remember that. When you think that Tripp's life could not possibly be more miserable. Think how God had the compassion to place him with a mother would love him SOO much, and would devote her entire life to his care. What if he had been born to a mother who chose to--let him die? How? By watching as infection ravaged his body? I have battled psuedomonas and there is nothing more painful (in my experience--and I have a lot to compare it to). Would another mother stand back and watched as he gasped for air like a goldfish who fell out of his bowl? Every decision you have made, every treatment you have given him was in his best interest. You have allowed him to live his life with as much joy and dignity and as little pain as possible. I am sure there are days when it may have been easier for you if he weren't around--what parent does not feel that way? What then would happen if every time your child was in pain or misery you said "Well--I guess it's time to put 'er down." My parents would have done that LONG ago, let me tell you. However, they realized they are not God. They do not have the power to take life. Everything will happen in His own perfect time. There is no need to force the hand of God.

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  187. I have been following you and Tripp's story for quite some time, and I never cease to be amazed at your love and compassion. I'm just so sorry you both are having to endure this terrible disease! I pray for your precious son every day. He is an angel!
    May God bless and keep you both.

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  188. Wow.
    Thank you for the update!
    Courtney, you are so brave. It's not just Tripp -- it's you too. And you're right. This will be the most difficult experience of your life, but I can clearly see that Tripp has also brought you some of the best experiences too. There's good and bad in everything, I suppose.

    As for those awful comments....
    I wouldn't give it another thought. Those people don't know what they're talking about. Certainly, no loving mothers could take her own child's life intentionally, so that's out.

    Euthanasia is not a real option (though I'm a firm believer that it should be -- we have as much right to die as we do to live. I say that as someone who lives with a degenerative condition that's associated with chronic pain that will only get worse with time. But I'm a firm believer that the individual would need to be the one to make that decision. I would never support euthanizing a child, unless he could understand and make the decision on his own.)
    And even if it was an option, what mother could go forward with that decision? Very few, even when it *is* in the child's best interest. When it comes to euthanasia, I struggle with my pets. My pets! (And I only euthanize when life is painful and there's no hope of recovery; when death is imminent.) I can't imagine trying to make that decision for my child. Impossible.

    To be selfish would be to hospitalize him and treat him aggressively, opting for painful treatments with injections and IVs and medications and procedures that keep him alive, but just barely. Selfishness is to keep him alive because *YOU* want him here, even if it's not in Tripp's best interest.

    Clearly, you have rejected that approach, instead opting to keep him as comfortable as possible. There is nothing selfish about your approach. You consider Tripp's needs, interests and perspective first, yourself secondly. That's the epitome of un-selfishness.

    Clearly, the people who have said those terrible things just aren't thinking. So please don't let them upset you (so much easier said than done!) Your focus should be Tripp and yourself.

    Now, are there adults with Tripp's precise condition? You mentioned a support group (what in incredible revelation, by the way -- that they'd choose death instead of life.) Do those people have the same variation as trip? Or do they have the less severe non-Herlitz variety?

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  189. Courtney, I have read your blog for months now. I cry every time I do. I cry for Tripp and for you. I wish it could be different, that Tripp never had to feel pain again and that you wouldn't have to watch him suffer... I pray for you so often- earnestly.
    The only thing I can say is that it wasn't supposed to be this way and one day, it won't be like this ever again. I ache for the day when all disease, and pain, and separation and heartache is gone. One day it will be.
    I hope you are encouraged tonight that our hope is not in vain and that you have people praying for you.
    love and many prayers,
    ebe

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  190. Courtney, I just stumbled on your blog tonight and am in tears reading your and Tripp's story. He is so lucky to have you as a Mother, and it's so clear that you are a wonderful Mother. I had never heard of this terrible disease. Saying prayers for you and your precious Tripp. There is a special place in heaven for you BOTH. And the nasty commenters? Ignore. They're obviously ignorant. Hang in there. Love and prayers from the Alabama gulf coast. XOXO
    www.shopaholicinalabama.blogspot.com

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  191. And here I'm complaining cause my son may have eye cancer...At leeast he's got a good chance of surviving...This is the most heartbreaking story I've ever come across. You have the most amazingly brave little warrior in your son and, he's got a wonderful mother in you. I'm sure your love and devotion is what gives him the will to live. I admire you with all my heart. I know it's hard, but Try to ignore the mean comments, those people have no heart. I wish there was something I could do other than send all the healing thoughts I'm capable of. Stay strong.
    http://areasontostayalive.blogspot.com

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  192. I have followed what you have posted on Facebook but I never took the time to read your blog, until tonight something told me to slow down and read it. I am glad that I did. Courtney, I am so amazed at what a wonderful loving mother you are to this amazing little boy.
    I have ran through my life in a haze just trying to make it through with little thought to anything. I realize just by reading your blog tonight that my children have grown so fast right before my eyes and I havent noticed. You have made me realize that I have to get out of the haze and really look at them and enjoy them and love them like there is no tomorrow, because one day there might not be a tomorrow. So thanks to you I will tell them everyday that I love them and I will take time to show them that I care and that I am greatful and blessed that I have them in my life.
    I pray that Tripp has no more pain and that you stay a wonderful strong loving mother to this little butterfly that has graced all of us with his presense and with his teachings.

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  193. Prayers of comfort for Tripp, and Peace for you Courtney.

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  194. You are an amazing mother who is completely self-less. So glad you are not letting the ignorant people out there get to you. They have no idea what it is like to have a chronically ill child.
    Oh and I love what the woman wrote about her prayer and God's answer to her prayer. It is so true, as much as our human eyes don't understand it Tripp, and every other chronically ill child out there is perfect in God's eyes!
    You and Tripp are a true witness to what God can and will do!

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  195. I very rarely comment, but I do pray for you & Tripp & your family every single day. I have read every entry in your blog & I believe that it is both the most heartwarming & heartbreaking thing I've ever read.

    You are a wonderful mother. So very selfless & dignified in your trials. It makes me so sad that someone else who has no idea what you're going thru would assume to pass judgement on you. Didn't anyone else watch Bambi? "If you can't say nothin' nice, don't say nothin' at all!"

    Keep on keeping on, Courtney. Our prayers are with you & your precious angel. I shared your blog link on Facebook & it got the most amazing response. Tripp has touched so many lives, including mine, & you're spreading the word about EB one heart at a time.

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  196. I just found your blog and have been reading it and crying my eyes and praying continuously for you and Tripp the last hour. You are an outstanding mother. I can only hope to a mother that's half as amazing as you are to Tripp. Keep doing what you're doing and providing the best care possible for your blessing. Hugs and prayers to you!

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  197. You are an amazing, amazing person, Courtney! You are so brave to keep working so incredibly hard for Tripp--and for all of the other EB kids. I'm praying for you and Tripp!!

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  198. You are simply amazing. I donated to the butterfly fund with Tripp in my heart. Tripp is very lucky to have you. I will pray for him and for you, that you both find peace in such a very hard situation.
    Kara

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  199. I absolutly can note believe you have any kind of comment on how you are a "selfish person". A selfish person would have let that child go and continued on in life no knowing or caring what happened to that child. You are NOT selfish person if anything u are selfless! Courtney this brings tears to my eyes and I want you to know that God has a plan for you and that baby! He will take care of everything and no matter what these mean people say you at the end of the day know you are perfect in God's eyes. Stay strong for that baby because he needs you to make it through this! God Bless!!

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  200. …and dear mama, you are also strong enough to continue documenting all of this. writing about it. good job. my heart goes out to you. I only understand a mere tiny sliver of your experience-I fought for two months for the life and well being and comfort of a sick and starving baby in an orphanage. That was so hard. I'm sure you know what I mean when I tell you how I could FEEL the Holy Spirit pouring life from me into that baby boy. You are stronger and more capable than you even know. I know you will never give up. Keep making him comfortable as best you can and you will definitely find comfort in knowing that you did whatever you could, no matter what happens or when or how. Keep praying, that is why you are surviving and able to find joy. And! The whole reason I wanted to comment: I love how Tripp is holding his tiny elmo toy in his little hand while he sleeps in that picture. <3 So precious and sweet.

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