Friday, April 29, 2011

Just call me Ms. Bookworm.

Tripp man is still the Diflucan for yeast, and also now on Clindamycin for his mouth.  Though I just think his mouth is beyond help because it doesn't seem to be working.  Within the past few days, he's had some trouble with his trach.  Not yet sure if it's a sore underneath the trach and a swollen airway again, or if it's just a cold or resp. infection with thick secretions.  But we are back on breathing treatments and back on the high dose of steriods.  He's just a TROOPER.  Plain and simple.  I don't know how else to put it.  It is beyond my understanding how this little boy can endure all that he does.  He's nothing short of a little saint.

So my super fabulous sister bought and mailed me a Kindle (just becuase) this week.  I thought that was pretty darn sweet of her.  Now, if you know me... you know that I have read approximately TWO books in my entire life.  One that I read last week- "Heaven is For Real" and probably another one I've read during high school that I had to read.  That's about it.  I have always hated to read.  But now, You can practically call Ms. Bookworm.  I joked with my mom today about not hearing something she said because I must have been "caught up in my book."  The joke in the house is always that I'm the "less intelligent" of the kids... just because I was always MUCH more interested in my "social life" than school or any type of learning.  So for me to even want to read a book is a big deal... haha.  But I LOVE my new Kindle.  THANKS SIS.  You're the best!  And after reading the book "Heaven is For Real" and the one I'm currently reading "The Boy that went to Heaven," I have A LOT to say.  So watch out faithful blog readers... I am FULL of things to blog about now.  

So first of all, if you haven't read the book "Heaven is For Real," get up, get dressed, go get it at the bookstore or buy it on your Kindle (iBooks, Nook, whatever) and READ IT!!  Oh my goodness, it is amazing... and I can't stop thinking about it.  I don't only love it because I have a special boy who could possibly beat me in seeing Jesus, but because it gave me a whole new perspective of what lies ahead for all of us.  Of course I believed in heaven before... and of course I've "learned in school" and read in the Bible about what heaven might be like.  But to hear what Jesus is like and what heaven is like coming from the mouth of a five year old- puts a whole new perspective on things for me. 

 God knows exactly what our lives are going to entail before we are even born.  I truly believe that.  God knew that we were going to have Tripp and that he was going to have EB.  He also knew that Tripp would touch countless lives of total strangers.  He also knew that we would have the greatest support system that there is.  He knew that placing Tripp into my hands was the right choice, not only because I would devot my life to him, but also that we have parents and family that would devot their lives to him. And not stopping there- we have a whole community who has stepped up and who is showing us nothing but support and love and the true meaning of "doing for others."  God knew ALL of this.  That is exactly what I was missing in my life before Tripp was born- FAITH and TRUST in God.  Yes, I would pray... but I was praying for things beyond my control and praying the totally wrong way.    

Every page in these two books screams at me: "Tripp was chosen." "You were chosen." "Have faith that God knows exactly what he's doing." "And TRUST that miracles DO HAPPEN." And even more now, I know that whatever happens was already in God's Will for us and for Tripp.  He already knows what's  going to happen.  These two books stress the power of support from the community- I think that's another reason I can relate so well.  They talk about the power of prayer and the importance of "prayer in numbers."  I know that Tripp has touched lives across the world and I know that he has people all over the world who are praying for him and following our story.  So we can't give up now.  

As each day in Tripp's life gets a little worse and he wakes up with new sores and new issues... I know that I need to focus on the positive of this whole situation.  But as a mother, that is getting harder and harder as I watch my son slipping further away.  There is no words to explain the feeling of gradually (but quickly) watching your son go blind right before your eyes- and there is nothing you can do about it.  Or witnessing the PAIN he is in when he wakes up in the morning or during a bath.  But I try to keep focus- and what helps me the most is knowing that not only does God know what He's doing with our lives, but He also sent HIS only son to Earth, to be tortured in the worst way possible- crucified on a cross- and to die for OUR sins. And Jesus' Mother watched as her only son suffered tremendously, was ridiculed, and was hung on the cross.  She knew that He would die and I'm almost certain that no matter waht, that wasn't easy for her- but she also knew that He would rise again on the 3rd day and bring salvation to the entire world.  Is that what got her through it?  It was our fault (through Adam and Eve) that the world was condemed.  And God gave us a second chance when he brought his son back to Earth.  When Jesus was hanging on the cross, took his last sip of wine to close the last Passover, and died- and when He did, He reopened the doors of Heaven for us.  And now it's our choice once AGAIN to follow the right path to get there.  And God knows in this world now, it's NOT easy.

I'm certainly not a Holy Roller, but I'm trying to get there.  That's a name that I wouldn't mind having... I just need a little help.  And say what you will... but when you're put in a situation like mine- you have to choose one of two paths: Following and trusting God or turning against Him in anger.  And in my mind, the first choice is the only way to get through in our situation.  All I know is that having Tripp, and him having EB, has totally and completely changed my life (of course).  But in a way that I just can't explain.  I am STARVING to know God and to learn everything that I have been missing in my Catholic faith.  And I am trying to find ways to let go of my anger and resentment toward other issues, but it seems like those issues just keep getting bigger and bigger. It's not an easy road... and it's not easy to find the time to devot myself to something other than Tripp. 

Now don't get me wrong- I have other stressors in my life even besides Tripp that sometimes cause me to fall WAY off the deep end.  And I'm slowly trying to work those things out to where they do not consume me entirely to the point where I lose focus in caring for Tripp.  But my gosh, these issues seem to be getting bigger and bigger by the minute and testing me in every way possible.  ** And just a little side-note to anyone who thinks that they might know ANYTHING about my other situation... I can assure you that you know NOTHING- no matter what anyone is telling you**  I will be more than happy to share the truth with anyone who would like to hear it. I desperately need to hold on to my sanity by doing what's best for Tripp and I.  Something that I should have been doing for a long time. I've been SO selfless in caring for Tripp, that I've forgotten about taking care of myself, too.  And there's a difference in caring for yourself and being "selfish."  Because God knows that being selfish doesn't get us very far in life.

 I'm thankful to have a very successful business man in the community and probably one of the most devout Catholics I know, Mr. Mike Fulmer, helping me better understand my Catholic faith.  He's turned it into something that has meaning... instead of something that was just a "routine" in my life.  He told me something the other day that I really loved.  He said that "as the father of his family, (he) accepts the role of teaching the faith the the people that (he) loves.  The most important thing that (he) will do in his life is to provide them with the information they need to get to heaven." I think this is so important and I think that anyone who is a father, mother, or role model to someone should feel the same in passing on what your loved ones need to find their way to heaven.  Mr. Mike has a teaching online called "The Fouth Cup." I've heard it a couple of times in person (along with many other Bible teachings) and it is just amazing.  It is the explaination of the Eucharist and the Last Supper/Passover.  This teaching has brought many non-Catholics and non-practicing Catholics back into the Catholic church.  If you haven't heard of it or have never seen it, please take a look.  I promise it will change your life (or at least make you think:) You can watch the whole presentation at:

And now I shall end with some more very deceiving pictures of my child, who will smile and play for me to snap pictures just so I can have some good ones to post here on the blog,  and then go back to his rocking chair:)

This was a HUGE deal last night when he not only wanted to sit on Papa's lap,
 but he was in the OTHER room!  Go Tripp:)

OH, and Happy Belated Easter to ALL... The Easter Bunny was pretty good to Tripp, though he was no more interested in anything in these baskets as he is the man in the moon.



  1. I love you Courtney! I really do. You and Tripp are an amazing team. I too was the one in the family more on the social side of things. But look at me now!!!! I have found God, even though He was there all the time, and I am doing something most don't. Not that I'm all that and a bar of chocolate ;) but I don't think anyone thought I would amount to much <3
    Go God!!!

  2. I was blog stalking and happened on yours. Now I'm sitting here with tears in my eyes. You are truly inspiring and it was an honor to read your story.

  3. Tripp is so cute! Prayers for you and your family! Glad you guys had a nice Easter! Heaven is For Real is a GREAT book. After my twins passed away last November I read it and was so glad that I did!

  4. I, too, am one of the Catholics left wanting more... I will take your advice and look at the link! Hugs to you Courtney and to Tripp!

  5. I don't know you, but from reading your blog for a long time, I can tell you are a very selfless person! You have devoted your life to Tripp!! Please do remember to take some time for yourself. Your such a beautiful young woman, not just outer beauty but I can tell inner beauty too!! You such a great mom to Tripp! Tripp is such an inspiration to me but you are too!! I pray for Tripp every time I pray! God Bless you both!! And God bless your family!!!

  6. Beautifully said - all of it! I will follow the link for the 4thcup, and am looking forward to it. I am a mom of three kids, and in my late thirties. I have found my catholic faith has kept growing and I am hungry for more. This easter I really focused on Jesus ( of course) but spent a great deal of time talking with my older kids about everything from Mary's point of view. It was heart breaking - and I see your parallel. You are an incredible woman. I have read your blog for over a year and rarely comment. Please allow me to thank you for opening your heart and home to us. You and Tripp are always on my mind. I also liked how you said God already knows what will happen, the plan as it were. I used to pray differently, begging for the outcome I think I wanted/needed. Now I realize I need only pray for the strength to handle whatever comes my way.
    May God's love surround you and your family, and the Blessed Mother hold you close.

  7. To be honest it is so very hard to look at those pictures of that precious ANGEL and not scream to HEAVEN how unfair this is!!!! But then I do think of all the people that have a new positive outlook because of you and Tripp. I am sorry that it was your son that was chosen and I am also so PROUD it was your son that was chosen!!!! It is so easy to be torn after reading your story!!! I will always Pray for all of YOU!!!! And sweet Tripp will forever be a part of my heart!!!!

  8. Sweet sweet boy- he is just an amazing kid (I know I've said it before but it's true!) Praying that his airway and yeast issues will go away quickly.

    And do NOT feel bad about trying to take care of yourself - you need to do that so you can take care of Tripp! Praying that you will be encouraged and have peace and rest.

    Have a good weekend, Bookworm! :) Enjoy your Kindle!

    Love from TX,

  9. I just got through a very long diaper yeast infection with my daughter. I tried prescription and over the counter creams, nothing worked. I got Northern Essence better butter cream which would not help mouth yeast but I also used grapefruit seed extract. I was very skeptical of it but that seemed to do the trick. I have no idea if it works on systemic yeast issues, just thought I would pass it along! Probiotics of course work wonders.
    He is a sweet and brave little boy.
    Oh, also have you ever thought about an iPad for him? I do not know if the financial resources would be there but it is really working well for a little girl who has cortical blindness. Check out Gavin Owens blog.

  10. Thanks for sharing those books. I'm going to read them. Two more awesome books that are packed with hope and a glimpse into heaven are 90 Minutes In Heaven and The Shack. Both are incredible. A pastor near you with a story of visiting heaven is Jessie Duplantis and he is sooo funny! Blessings to your family.

  11. Your faith and your deep love for Tripp inspire me.

    I am so glad that you are growing in your faith. I am a Catholic, too, and our faith offers so much hope and strength. I will continue to pray for you and Tripp.

    I think it's a very good thing to be taking care of you.

  12. Heaven Is For Real s one of the best books I have ever read. I found it a few months back and read it on my kindle. I was completely taken by the story and tell others about it all the time. It gives me such comfort to know that heaven is waiting for all of us and I cannot wait to be there someday. Your blog continues to inspire me. Tripp is so very lucky to have you. You were meant to be his mommy. A friend once told me that children choose their patents. That sometimes children know they will live on Earth in broken bodies so they choose patents who will love them and take such amazing care of them while they are here. I think of her words often and it gives me comfort, for I know Hod doesn't make mistakes. He knows exactly what he's doing.

  13. Oh automatic spell corrector drives me nuts....that should read "parents" & "God"

  14. I just found your blog and have not been able to stop reading....I have read for touched by your story...Have added your button to my sidebar.....

  15. As always Courtney,Thank you so much for posting pics of Tripp I love to see his little face! He brings so much joy to my heart. I know that you go through alot from what we read in your blogs and there are things we don't know about you that go on in your life. But I do want to say that I pray for you, Tripp, and your parents alot. Because you take care of Tripp so much and love him so much, for your parents because they are there for you, and for Tripp because inspite of all the things he goes through he shows me the love of life. Your words today have given me alot to think about. Looking forward to reading the books your recommending,closing this up and heading to Barnes and Noble right now:) sending Tripp many many kisses!

  16. Courtney,
    Sorry you are having other issues besides the daunting task of caring for Tripp.
    Over the Easter break I read "Waiting for Eli", written by Chad Judice of Lafayette. He and his wife learned during her pregnancy that their son would be born disabled with Hydrocephalus and Spina Bifida. This was his greated fear, to have a child with a disability. Through his journey he finds faith and trust in God and experiences little miracles along the way. It really shows the miracle of prayer and faith in God. If you get time read this one as well.

    take care

  17. I as well don't know you personally. I stumbled upon your blog while looking at another. You are an amazing person and I don't have to know you to know that! You are so blessed to have Tripp in your life, just as he is blessed to have you. God defiantly knew what he was doing.

  18. Hi Courtney: I have a kindle and just ordered the book. Thanks for the tip. I will let you know what I think after I'm done. I'm sure it will be amazing.
    Sorry that Tripp is still having so many issues. Love that little boy so much. Love the pictures, especially the one with Tripp sitting with your Dad. Thank God you have your wonderful parents to be there for you. They are very special. I guess that's where you get it from.
    Give Tripp a big hug and kiss for me. Please take care of yourself. Love and hugs Leah's Nana

  19. You can always count on satan coming at you full force when you get closer to God, trying his best to bring you down. Praying in particular for your continued strength - physical, mental & spiritual. Happy Mother's Day!

  20. I stumbled upon your blog too and have practically read the whole thing! Tripp is amazing and what a great boy he is! EB or not he is the smartest 2 yr old i have ever seen, your love shines through him! I love him dancing. I could go on forever. Your a great mom!

  21. Courtney. You are just beyond! I can't fathom what you go through emotionally, mentally, physically- every single day. Just wanted you to know you are an inspiration. There are many many jewels in your crown my dear. God bless you and that sweet baby boy.

    P.s. You are beyond gorgeous :-)

  22. Happy Mother's Day to without a doubt the MOST AMAZING mom I know. I hope you had a wonderful day!!
    -Jessica J

  23. Just wanted to pop over to wish you a Happy Mother's Day. You are the most sacrificial and loving mother I "know".
    Wishing you all the best, and praying for God's merciful touch to be on sweet Tripp.

  24. hi courtney - i hope you had a good mother's day!

  25. Hi Courtney & Tripp,
    Just wanted to let you know that my little pre-school class continue to pray for you and Tripp. Everyday they ask about you and Tripp. I tell them how special Tripp is and how special you are and that God always knows what he is doing, even though we don't always understand. You and Tripp are an awesome pair and I am so thankful for you to have your Mom to be such an important part of your life. Hope you all are having a good day!

  26. I bought a nook earlier this year, and I"m hooked on it. First of all I LOVE LOVE to read. I have found many "free" books that I love, as well as the ones that are cheaper as well. I read this one about a pastor who was in a huge accident, now if I could just remember the name but he spend some time in heaven and comes back and tells of his pain of recovery and almost his faith failing. How he saw the greatests things in heaven but was brought back to earth and was bitter about it because everything there was perfect. And being brought back to earth to begin healing from his injuries was very painful. shoot, my memory fails me but it was really really good.
    Maybe its 90 minutes in Heaven?