Monday, November 22, 2010

"Pray without ceasing" -1 Thess 5:17

Hey guys.  Tripp actually had an okay day yesterday and and a pretty decent day today.  Today he actually sat on the floor for awhile and let us play with him, without fussing for us to pick him up.  That's a pretty big deal for him becuase he hasn't been doing that at all.  He still had his moments where he would feel bad and just want to rock... but you can at least tell that he WANTS to play, but just sometimes can't because his eyes hurt him too bad.  

Tripp is SO much fun when he actually "feels" like playing.  He has the best personality ever.  He's so funny and definitely keeps us on our toes.  He's to the point where he can tell us "no" and really know what it means.  And I have to say it's pretty darn cute when he's so rotten.  Like if he has your phone and you want it back- he says "no," or if he takes my mom's glasses and she needs them back- he says "no," And my favorite, when you ask him for a kiss- he says "no." 
Look how rotten...

I love this walker because it's older (we got it from a family member) and it's got 6 wheels instead of 4, so it helps him to turn easier without dragging his feet.  Some of you had asked questions about the walkers/bouncers awhile back... wondering how we used them without getting blisters.  I usually just leave a blanket in it so the blanket keeps the edges of the seat from touching him... and usually as long as he's bandaged up and no skin sneaks out, he's okay.  But that could change soon with all of this bouncing around he's doing now- like in this next video.  

He learned a new sign yesterday- Quiet or Shhhh.  It's so cute. We taught it to him after we realized that he gets a little attitude when we ask him to sign something and he doesn't want to.  So we taught him how to tell us "shhh.. or quiet"  Yes, I know... we're creating a monster.  He doesn't really know how to use it, though.  But he DOES know how to "slow" dance and "fast" dance (and the little fuss he gives the first time I ask him to do it, is what we get A LOT :) See?

This child LOVES music.  My favorite is when he's rocking in the rocking chair with his eyes closed, you start singing to him... and you can feel his back start to "bounce" to the rhythm that you're singing.  He's got the cutest little dance that he does to ANY music with that quick, jerking, head-nod.  It's just plain adorable.  Right now he loves The Itsy Bitsy Spider and I love when he does the "sun" part:)

And he also "wanted" to get in his swing yesterday... it probably messed up his eyes more, but hey- he gets what he wants.  Even if it's Grammy's glasses.  Watch how happy he gets when he knows he got what he wanted:)

Yes, today was the last day of his 10-day antibiotic cycle.  Could it be possible that they did their job and that his eyes are just bothering him now- yes.  Is it possible that in 1-2 or 3 days he will start feeling terrible again- yes.  But all I can do is be thankful for the good days that he does have and make sure I witness every second of his happiness and every second of his misery.  Because in all reality- I don't want to miss out on ANY SECOND of his life, no matter what. 

I'm on cloud nine when he's feeling just a little bit better- enough to actually make me believe that he has SOME quality of life.  Though when we bathed him yesterday... it was SO bad that I told my mom that my heart just sinks to my feet and I honestly would rather ANY alternative than for him to be in the pain that he's in (and the itching that he has).  But then about 30 minutes to an hour later- half way through bath- he's like a new boy.  It's like he feels 110% better.  And it's two totally different types of emotion for me.  Talk about an emotional roller coaster...  The good times are good and the bad times are BAD.  

But I'm learning.  I am learning SO much.  From Tripp...from others....and from God.  I'm realizing more and more each day why God chose me for this journey.  I was starving for Faith and missing SO much in my life.  For those of you who don't know by now... I am Catholic.  And up until last week, I was the Catholic who went to church every Sunday, and instead of flipping through the scriptures to see what mass was going to be about... I would flip through them to see how long they were going to be.  Or instead of giving my undivided attention during the Liturgy of the Eucharist... I would be looking around to see who all made it to church that day.  But for the past 2 weeks, a very close family friend, who is an amazing man of faith and who knows the Catholic religion inside and out, has been coming to study the Bible with me... and teaching me.  And I am BLOWN away.  I don't know if it's because us as Catholics receive the Holy Spirit in Confirmation too early, or if it's just that we aren't taught IN DEPTH about our religion and faith at an early age.  But let me tell you... I am learning things that I never knew, getting questions answered that I've had for years, and growing in my faith each new day.  And I'm loving every minute.  

I know maybe that it's sad that it took something horrible like my son having EB for me to actually be READY to learn (because you have to be ready)... but maybe this is all part of the big plan.  Maybe He has big plans for me.  I already know that He has big plans for Tripp.  

We rejoice in the hope of God's glory.  Not only this, but we also rejoice in sufferings, knowing that suffering produces endurance, and endurance, character, and character, hope.  -Romans 5:2-4



  1. Tripp is the cutest kid-seriously gorgeous boy! I'm so glad there have been some playful moments, it must make your heart sing.

  2. Courtney, I too, am Catholic. I think we sort take the "ride" early and just are set out to sea. We ride this boat sometimes simbly because we were taught, like you say at a young age, to simply sit and ride. Bible study is wonderful. Something I would love to do as well! And I think I WILL... see Tripp inspires YOU, You inspire ME and so on and so on! Tripp is a Treasure!

    Here's a tip... add to the itsy pitsy spider song. 2nd verse: the GREAT BIG GORILLA ~ sung in a deep loud voice! 3rd verse: the teeny weeny ant ~ sung in a high quiet voice! I teach a Music In Motion class and would love to send you a cd of some fun fun music!

  3. Courtney, he is the cutest little thing EVER! My little boy (almost 3) asks to see Tripp all the time. At first, he asked me if Tripp had been playing in the dirt. I explained that he has booboos on his skin. Since then, he has asked me several times if we can help Tripp's booboos go away. I explained to him that we can pray for him. Tripp is reaching all kinds of people...teaching them about prayer...even 2 year olds!

    Tripp is such an adorable boy and he is SO smart! Would it be possible for him to get a speaking valve for his trach? I can see that he is trying to form words with his mouth. I've worked with a couple of people who used a speaking valve; I'm not sure if that's an option for sweet Tripp or not, maybe it would put him in too much respiratory distress? You are doing an AWESOME job with signing!

  4. I am laughing out loud at Tripp's antics. He is one smart young'un! Keep the happy videos coming! It makes my day to see Tripp playing and just being cute in general. I love the joyful sound of your voice and the love and pride that fills your every word. By the way, I love your could be a model! Gorgeous! I think you are beautiful inside and out!

  5. ...and the rest of that Roman's verse's........"and this hope will NOT lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love." I love that part of about our hope in God WILL NOT lead to disappointment, bc our hope in other things.....meds, hospitals,people,our own strength....all that WILL disappoint us at one time or another in our lives....but not God. .......praying for your little guy.

    Sharon (your mom's friend from Costa Rica)

  6. I love Tripp, he is so lovable all the things he does just cracks me up. Kisses and Hugs!

  7. Hi Courtney!
    Those videos are just wonderful. I'm so glad the bouncy is working out for Tripp. Bella LOVED her bouncy seat, it made her so happy to be up off the ground and seeing the world like the rest of us, especially her big sissy!
    I too was raised Catholic and completely resonate with your experience. It's almost as if we are taught to be passive listeners instead of active readers. That's what I was left with at least.
    I am so happy to also hear the this experience is bringing you closer to your faith. I've had quite a few comments on my blog about how tragedy and suffering has driven people away from God. I just don't understand. I guess there is much work to be done to really show people what faith can be, and you are doing that EVERY MOMENT of every day with Tripp.
    I'm proud to know you and be your friend. You inspire me, too! Many blessings and hi to your family,

  8. I think no matter what religion a person is that as a teenager/young adult we all tended to do the same things - see how long service would be, etc.

    I know this is probably a really stupid question, but are there any type of sunglasses or something that Tripp could use when he is outside, or even inside? I know when I've had an eye infection all I've wanted to wear is my sun glasses - kept the air off my eyes, as well as the sun. Could your local optometrist somehow fashion some sort of glasses that wouldn't hurt him too bad? Or contact a manufacturer to see if they could come up with something?

    Your new picture is beautiful by the way.

  9. Sweet sweet Tripp - that boy is just TOO cute for words!! I've been praying for his little eyes and bottom to heal quickly - will keep praying for that.

    I'm not Catholic, but I catch myself doing the same things at church sometimes - I think we all get to that place because it's so easy for us to try and do things by ourselves instead of trusting the Lord to work His plan in us. I'll pray for you to continue to grow closer to Him and that you'll have encouragement and peace!

    Please kiss that sweet boy for me - can't wait to show these videos to my kiddos!

    Love from TX!

  10. Hello!

    I read little Elly from Sweden's blog, and have really noticed how her skin has improved lately, especially her face. Her mother attributed it to some kind of steroid cream, I believe. If you think it might be helpful for Tripp, maybe you could ask her about it.

    Just wishing I could do ANYTHING to help!

    Your family are in my prayers often!


  11. Tripp is such an amazing, cute baby.

  12. Love those videos... what a precious little guy. It must make your day to see him so happy.

  13. I have never commented before but stumbled on your blog and I think you are doing an amazing job under the most difficult of circumstances. My thoughts and prayers are with you and your beautiful son.

  14. Boy can he get those little legs moving!

    So glad that you're able to be encouraged by getting into God's word. Not sure how any of us make it through the pain in this world without the hope we have in Jesus.

  15. Courtney, you must be so proud. What a precious treasure you have been given. He's a little potato and a firecracker all rolled up in one! Love it, love every little bit!

    Love wins,
    Renee Tam

  16. Hi Tripp,
    Your new video's were great. I've had a smile on my face all day long.

  17. He is about the cutest little monster ever!!! I love the video's and it is awesome to see him so happy.

    Give him a gentle hug from me.


  18. Courtney you are such an inspiration to all of us!! God works on mysterious ways and you are one of those ways!! You are a very special person who instead of being angry with God for what Tripp has to go through you embrace the Power of GOD! I know you have those angry times and you have every reason to experience that. Tripp has taught us so much!! Do continue on your journey of getting to know God's wondrous message!!!