Wednesday, September 7, 2011

The definition of a HERO.

I have to introduce you to someone. 

But first, I want to start by giving you a brief summary of 
"a day in Tripp's life."  
Tripp doesn't know a day without pain.  He wakes up in pain, he goes to bed in pain.  He starts the day with a painful diaper change, while he cries so hard that he struggles to breathe and has to be suctioned usually more than once during one diaper change.  
He then goes straight into the rocking chair into our arms (with us knowing that we better not even stop to grab something off of the table or we are getting "fussed").  
He rocks the entire day, with maybe a few minutes of playtime here or there a couple of times a day (if we are lucky).  He has lost his eyesight due to blisters that have formed and scarred over his eyeballs. 
 He never gets to do the things that normal children can do because he can't speak, see, walk, or even go outside. 
He has to have a bath and dressing change every other day that causes him extreme pain and anxiety.  He knows this is coming and usually dreads it for half of the day worrying about when we are going to pick him up and undress him.  
If it's humid outside, his trach is usually better, but we do a lot of suctioning.  If its dry out, his trach stays dry and he has trouble breathing even with his humidifier on. 
He eats by me shoving food into his stomach with a tube.  He wants to eat by mouth, and will try occasionally, but usually takes one bite and decides that it hurts so much that he doesn't want another.  
He has over 20 teeth that he's had for over 2 years that have never once been brushed.  
He has sores all over his entire mouth and tongue from his teeth rubbing (just like if his skin is rubbed).  
OH, and his body is covered in raw, deep wounds that never heal and he has to stay wrapped in thick bandages every second of the day, with pounds of Aquaphor underneath those "already suffocating" dressings.  


It's one thing to have this happen to your child without you choosing or knowing it.  
For me, of course, there was no other option than to devote my entire life to my baby- just like most mother's that I know would do.  


What if you knew all of these things that I just mentioned to you, and yet you STILL CHOSE to step up to the plate and devote your life to a child with this disease (who is not even your own flesh and blood)?  Now THAT to me, my friends, would be the definition of a HERO. 

Meet my Hero, Caroline:

Caroline is 20 years old... Yes, only 20 years old...
And she has volunteered with babies and children in Russia, South Africa, Swaziland, Lesotho, Romania, Thailand, and China since 2008.  She spent the last year volunteering in China and Romania, as well as advocating for waiting children in China, and children in need of medical visas around the world.  

Currently, she is fostering a beautiful little boy named Raul, who also has EB.

Meet Raul:

Caroline tells his story on her blog: "Raul was born in Barlad, Romania, on October 19th 2009. He was born with Epidermolysis Bullosa, as was his sister who passed away at one month old.  He lived in the hospital for four months, when he was then trasfered to Tutova Clinic. I met Raul the day he arrived in Tutova, and immediately fell in love. At the time he was in very poor condition, and his condition was not widely known in the area. I was in contact with doctors in the United States during my time in Romania to help find ways to improve his quality of life. Once home I began working on getting Raul a medical visa to come to the U.S. for a short time to receive more expansive testing and wound care. Finally in early August I got the email I was waiting for, and Raul was accepted to Massachusetts General Hospital and Colorado Children's Hospital for free medical care!"

Caroline is taking care of this beautiful little boy mostly by herself and with the help of her courageous and supportive parents.  She is devoting her life to keeping him alive and getting him the best care possible.  She is by his side every minute of the day, never leaving the hospital... not because she HAS to, but because she WANTS to.  Caroline is from Massachusetts, but her and Raul are currently in Denver, Colorado, where Raul is receiving free medical care.  
Last week, he had a feeding tube placed because he was unable to eat without being in pain and without his mouth bleeding.  
He is also receiving IV antibiotics for an infection that was in his bloodstream.  

And just like every other EB child that I "know," he seems like he has the best disposition.  Smiling, playful, and happy.  

How unfair and cruel is this disease?  

Raul's sweet little hand...

I would love to be able to say (before Tripp was born) that I would have fostered and cared for an EB child (or any special needs child) just because it was the "right" thing to do.  But I can honestly say that I think I was way too selfish.  Thank God that there are people in this world who put their own selfish needs and wants aside and CHOOSE to cater to the needs of the less fortunate.
Because it's one thing to devote your life to YOUR child, but it's just downright admirable to devote your life to a child who is not your own.  

So, please, take a minute and hop over to Caroline's blog
and show her some support. 
And please keep her and Raul in your prayers.  
She's is giving a VOICE to one more child who isn't able to have a voice of his own. 
Much, much respect and love to you, Caroline. 



  1. Continuing to pray for you and sweet Tripp. And now I'll add Raul and Caroline to my prayer list. Hugs to you.

  2. Courtney... you and Caroline are via blog entries and facebook posts helping to inspire so many- you are changing the world, one day at a time~ the way people love and share their love. How they use their time and energy- to help others, whether loved ones or strangers. Your love for Tripp and Caroline's love for Raul are like a light shining on my mommy heart. I want to emulate you both :) Thanks for always sharing Tripp with us... his bravery and spirit have changed my life. xoxo

  3. I think you are a hero- as a mom myself, I am just amazed by your strength and positive attitude and I can see where your son gets his determination from. You are a hero all of us moms who face struggles with our own children and continually remind us how blessed we all are. continued prayers for you and your precious boy.

  4. Thanx for sharing this. Always in my prayers <3

  5. Thank you so much Courtney, I really appreciate it! Wish Raul and I could meet you and Tripp! -Caroline

  6. I love reading your blog and pray daily for your beautiful little both are amazing.

  7. I just found your blog and am in awe of you and Tripp. You will be in my prayers.

  8. I am choked up and in tears, again. Y'all are both heroes.

  9. I'm in tears. Caroline is a HERO, as are YOU! I will never understand WHY these sweet babies suffer so much, they are in my thoughts and prayers. All of you are.

  10. I am in tears because both of you are such amazing women. Both of you have strength like no other and those boys, my goodness where do I begin. They are truly the definition of strength. God bless your family's as you continue on this difficult and cruel journey. ((HUGS))

  11. AMAZING. You are both heroes. Praying for Tripp and Raul (and for you and Caroline!!)

    Love from TX,

  12. That is the most beautiful thing I have ever heard. I love to read your blog, because when I read about you and Tripp and the stories about people like Caroline, it reminds me of the beauty God put in the world. It reminds me that God can make beauty out of the ugliest of situations. I think Tripp and Raul are two of the most precious and amazing babies I have ever read about. I think their families and mothers are sent from God to care for them, God chose yall because he knew yall had the grace and would show his light best to these babies. He knew yalls love and care would give them warmth and happiness.

  13. That is such a Beautiful post!!! Praying for Tripp and Raul!!! This is a horrible disease that these babies shouldn't have to suffer with.

  14. Courtney, I follow the caring bridge site of another child with EB - Samantha Sheridan. She is 16 years old, and underwent BMT several years ago (two, I believe). Since then, her condition has only worsened, and she has been dealing with 6-8 hour bandage changes and 30-50 new blisters a day. Until this past week.

    When she was being readied for stem cell harvest, she was administered the drug GCSF - and instantly, her wounds healed, her mouth healed, and she stopped blistering. Because this drug can have some dangerous side effects, and she needed to undergo her BMT, it was not continued as there is no research on it in EB children.
    Well, her situation has been worsening and become rather dire recently, so one of their doctors decided to try the GCSF just to see what would happen. And within a day, her mouth was healed, her wounds closed up, and she is NOT BLISTERING. From 50 new blisters a day and a body raw and more or less without skin - she is now eating everything in sight because her throat and mouth are healed.
    This doctor is looking for EB patients to include in a clinical trial - but only 15 or 16. They are located in Nashville, and I know you are in Louisiana - close enough. I IMMEDIATELY thought of Tripp. It was instant, as soon as I read her caring bridge update. It was as if something divine was telling me that I NEEDED to get you two in contact, if you were not already.
    Tripp and Sam are at a point where there is nothing left to lose but their lives - and if there is a chance, a CHANCE, that this might relieve sweet Tripps suffering and improve his quality of life - that could be your miracle.
    Is there any way I can email you? I would like to send her caring bridge journal post and her email address..... you can contact me at kirstinstenberg@me (DOT) com

  15. Praying 4 ur family daily. U, ur mOm, and off course Tripp is on my thoughts daily. Thinks 4 sharing the other families stories.

  16. To me yall are both heros. My prayers continue to go out to you and tripp and now to caroline also.

  17. your posts always make me stop and focus on what's really important in life! Thanks for everything and I know God is with you two!

  18. Still praying. Thanks for the post. Tell Tripp there are kisses being blown his way from all over the world.

  19. Courtney, As we continue to pray daily in my family for Tripp and your family-- I can't help but be excited about this GCSF drug helping Samantha. The above poster, Lindsey talked about it, and I went to check out her Caring Bridge page. Perhaps both Raul and Tripp could participate! Breakthrough drug maybe--- I am praying sooooo hard for this to be the case!!

  20. She's such a sweet lady taking care of Raul.
    Thanks for sharing Caroline's story Courtney. Prayers and thoughts are always sent to your family and also to baby Raul and Caroline and to all kids who are suffering from this bad disease.

  21. Courtney,
    I have to agree with you it takes a very special person to take the time from her very young life to help another precious life that deserves nothing less. However I do have to say that you as Tripp's Mom deserve the biggest hug and to be recognized for the Wonderful Mom that you are. I can not even imagine the daily struggle of watching your little angel suffer day in and day out. I would wonder daily what did I or he ever do to deserve this pain. It is just not fair in any way. It just goes to show what a person you are by putting another person in the lime light instead of yourself. Thank you for these up dates.

  22. I feel blessed that I happened upon your blog. I don't know you, or your precious son Tripp...but I do know that you are hands down the best mom in the world. May God pour his blessings upon you and your son and your family. Your strength inspires many, so thank you.

  23. I've visited your blog a couple times now and I sob every time I read your posts. Tripp is no doubt a God sent Angel here on earth. You seem like such a pure person and you are an amazing mother hands down. Your story is so inspiring. May God bless you and your family.

  24. A friend just shared a link to your blog on facebook- and so glad she did... My heart goes out to you and your baby, and I will be lifing you guys in my prayers...

    Love, your sister in Christ- Katie

    "Be strong and let your heart take courage, all you who hope in the LORD!" Psalm 31:24

  25. I just found your blog via a pinterest pin and my heart is aching for you and your little one. All little ones with this disease. You, Tripp, Caroline and Raul will definately be in my prayers. Adding your button to my blog to encourage more prayers for these littles.