“For whoever wants to save his life will lose it, but whoever loses his life for me will save it. What good is it for a man to gain the whole world, and yet lose or forfeit his very self?”
-Luke 9:24-25
This Sunday's gospel reading was about "taking up your cross." And of course, I try to relate every reading and every scripture to Tripp's situation. But this one was easy. Tripp is carrying his cross every second of every day. He is TWO years old and he's been through more pain in his life than most of us combined, yet he carries his cross with such grace and with a smile on his face. I realize that he gets his strength from God, but some days it's just overwhelming to see. Ok, so my point? Isn't innocence just beautiful? Even in this situation... where Tripp is too small to even know to trust the Lord. When we all are handed our crosses (and EVERYONE has a cross, no matter how big or how small), don't we all wish we could carry them with the innocence of a child? Without complaining, without wanting vengence, without humiliation? Don't we wish that we could just trust in God that He knows what is best. Instead of praying and trusting, do we throw blame and finger-point? I know I'm guilty a lot of times. Because it's hard. I wish I had the strength and innocence of my little man... trusting, smiling, and fighting through the pain. Because as we ALL are having to work hard for our seat next to God and work on carrying our crosses like He wants us to, I am certain Tripp's seat already has it's nameplate engraved as "Drummer Boy."
So it's about time for an update, right?
Things have been about the same over here lately. Last week we had a little scare with one of the sores on Tripp's ankle. It was red and draining and his foot started to swell, but we started him on an antibiotic (the only one we have left that's sensitive to the pseudomonas that he's covered in) and things are looking a little better. Still not 100% though. It's still pretty painful for him.
Last night was a bath night and I gave him his pain medicine and at about 9pm, I tried laying him down on the table and when I did, he pulled up and turned completely over on his stomach (first time he's done this on the bath table). WE ARE IN TROUBLE. So I guess we've been a little spoiled at bath time because he's been so good and so still for us. But he's obviously had ENOUGH. If he can help it, no more bath time for him. SO, since there would be no way that we could "handle" him rolling over like that while he was naked or I would tear his skin... I had to put him back on the rocker, give him a sedative (which I hate), and wait for it to kick in before we started. So at about 9:30, we tried again and he was knocked out. He let us undress/unbandage him without crying at all, but then after we got him out of the tub and back on the table, he cried the entire time. It was terrible. He cries if he's sedated and he cries if he's not. But at least being sedated, he can't roll over like he did.
Playtime has still been about once or twice a day that he will stand. And the rest of the day is spent rocking with us in the rocker. Each time he stands is just a few minutes- but you know me... I catch all of those minutes on video:)
So here they are... my baby's mad drumming skills!
I thought I'd never see my little angel drumming again.
He's such a little blessing.
And as always, thank you all for the continued outpour of love and support you've given us.
It carries us through each and every day.
Love,
Courtney,
ReplyDeleteYou are such an inspiration and so is your son. You all are in my thoughts and prayers so often. Take good care.
Your blog friend,
Tina
I have prayed often for your family! Thank you for making Tripp real to us through your video clips.
ReplyDeleteSuch an amazing little boy. God is truly good. My thoughts and prayers are with you all daily.
ReplyDelete~Katie
He is such an amazing and adorable little guy. And that is one of the most amazing smiles I've ever seen! He's so lucky to have such wonderful people caring for him. Thinking of you both!
ReplyDeleteHis ability to find a beat and make his music amazes me and I know he is truly blessed by God!
ReplyDeleteHe's so beautiful, his videos just make me laugh!
ReplyDeleteDo Lord... watch over your drummer boy and his momma! We all love to see him perform! Thanks for sharing his musical genius with us all! Hugs~ love Meme
ReplyDeleteLOVE THIS! Love your post as well, Tripp is definately an inspiration to us all in carrying his cross. He's so precious!
ReplyDeleteThanks for the update. These videos make my day. I continue to think of you all constantly. I have fell in love with Tripp, he is such an amazing boy. Hope Tripp has a comfortable week and is able to play and smile bunches! Courtney, you and your mother are so strong and so amazing. The life you give this angel is wonderful, you are all so blessed to have each other. Lots of prayers lots of love to you all.
ReplyDeleteThank you for taking the time out of a very busy schedule to share your experiences with Tripp.
ReplyDeleteWe get so excited when you update the blog.
My daughter & I are addicted to this little angel.
Tripp is an inspiration to us all, carrying his Cross with such grace.
May God give you all comfort, peace and strength.
I have followed your blog for quite a while but haven't commented. I pray regularly for Tripp and your family. He is such a sweetie! He really does have talent with the drum stick. Thank you for sharing the videos.
ReplyDeleteWhat an amazing talented Blessing you have! I'm in awe of his musical abilities! Wow!
ReplyDeleteBeautiful, amazing and inspiring all wrapped up in a little boy. Thank-you for sharing those precious moments with us.
ReplyDeleteStill praying in TX
I just wanted to say Thank You, Thank you for having the strength and courage to write... I came across Your Blog of Tripp couple of weeks ago looking for strength in written words and I have found it here. The strength you and your son have together is only made with gods touch. I pray every night for Tripp and you.
ReplyDeleteAbsolutely precious! Such a strong little man. Still praying for you daily. Thank you for the post.
ReplyDelete~Sarah Morris
Thank you for the update. My six year old and I read your blog and watch the videos together. We love Baby Tripp. We will continue to pray for you and your sweet baby boy.
ReplyDeleteJodie
Ft. Worth TX
I am amazed not only at his strength and beautiful spirit, but of his talent as well! That Tripp is AMAZING!!!
ReplyDeleteThank you for sharing. He is a wonderful drummer and such an inspiration. :-)
ReplyDeleteour whole family loves to gather round and watch little tripp over and over.
ReplyDeletehe is so inspiring.
press on courtney! Your words were so good tonight.
remember this is not our home! we await a home in eternity, with our Lord Jesus. No more pain, no more tears, every eye will be wiped dry.
blessings and prayers said for you all.
I am brand new to your blog and am floored by how well he does with the hand motions and with that drum! He's only 27 months old, right? I work for an early intervention program so I feel like I have a pretty good idea of what kids do at different ages. For him to beat on that drum like that with the music and words? WOWZA!!!! What a smart little boy you have. :)
ReplyDeletebeen reading for awhile but this is my first comment. you are an inspiration and your son is so cute and sweet. thank you for sharing this journey with us!
ReplyDeleteI'm praying for swift healing and comfort for little Tripp. God bless this family abundantly!
ReplyDeleteWow, he's such a natural little drummer. He's got a God given talent and he's such a special angel to everyone.
ReplyDeleteCe petit garçon est extraordinaire !
ReplyDeleteI hope you continue to catch every moment and continue to share them with all of us!! Watching those clips always makes me smile. Despite all his pain, despite everything he has to deal with.... he still finds happiness! What a beautiful, delightful soul that boy has!!
ReplyDeleteAnd the "no" head shaking with the adorable smile does me in every single time!!
My co-worker and I are just absolutely in love with Tripp. We both have little boys of our own and we can't imagine your struggles. You guys are amazing. We are rotting for Tripp! Love all the videos and updates!
ReplyDeleteDrumming is how he sings! Beautiful!!!!!!
ReplyDeleteElizabeth
Amarillo, Teaxs
I am new to your blog, and had never heard of EB before now. I will never understand why children are struck with such a horrible disease.
ReplyDeleteI will say that you are a rare gem. You are taking such good care of Tripp. He is a precious little boy!
OMG! I have started following your blog not too long ago, and you're strength and way of seeing the positive side is inspiring! I love how Tripp sings along, mouthing the words and how he totally has rhythm! He's just soooo smart! I'm in love with this Drumer Boy!! :)
ReplyDeleteI love his mad drumming skills! His play is so precious. Please keep posting videos. He is awesome! I love when he tells you that he doesn't want to play the different songs. It makes me laugh! Your words were truly inspiring at the beginning of this post. Thank you for sharing this with us.
ReplyDeleteHe is precious....
ReplyDeleteI am amazed that he can bang on those drums to the tune of the song so well! He is an amazing little boy.
ReplyDeleteThis is adorable and I don't know who is more amazing you or Tripp! God bless you both! :)
ReplyDeleteyour son is an inspiration for us all. keeping tripp in my thoughts and prayers.
ReplyDeleteLast week I had the canker sore of all canker sores. It was huge and hurt so bad. I told my husband, "All I can think of is little Tripp and how his body inside and out is full of these types of sores. . . " Every time I brushed my teeth, ate, or drank, or my kids kissed me and I felt it, I prayed for Tripp. Such a brave hero he is!
ReplyDeleteI love love your posts and your little man. How beautiful it was to just read your sweet words about being like a little child... Man I needed to hear that and I can't stop crying. You are one of the most amazing woman I have ever (well we havent met) ... I want to thank you for sharing Tripps story with us. He has touched so many lives and also helped my spiritually. You are both beautiful inside and out. Thank you!
ReplyDeleteLacy
Love seeing him up and playing, keep the video's coming!!!!!!
ReplyDeletePraying hard for your sweet, sweet drummer boy and your family! Oh my goodness, he is just incredible with the drums!!!! It's amazing!
ReplyDeleteWow! What an amazing little drummer! That's talent! He's so sweet.
ReplyDeleteHe is just the most special boy. He has such a gift for music. I loved seeing your mom's sweet smile as she watched Tripp.
ReplyDeleteI pray for you and Tripp.
What an amazing, beautiful, gifted little boy you have! You should be so proud!
ReplyDeleteNot only does your little angel carry his own cross, he has also hepled countless others find their faith again to carry their cross in this life. God has truly blessed you with one of his most perfect angels care for. And God has blessed Tripp with an amazing mommy and family to love his little soul forever:) Thank you for sharing him!!
ReplyDeleteI have followed you guys for just a short time, but I can truly say that Tripp's spirit, courage, tenacity, and strength have inspired me in so many areas of my own life. God is using your story to touch so many lives, my own being one. Thank you so very much for sharing. I am praying for lessening pain and more drumming playtime!
ReplyDeleteWhat a blessing and inspiration you are, Tripp & Courtney! Thanks for sharing your story, videos, and updates. You have our love, thoughts, and prayers always.
ReplyDeleteLove, Angela & Ethan
Holy moley--this boy is S-M-A-R-T and TALENTED! You do know most 2 year olds can't do this, right? Great job Tripp, you're amazing!
ReplyDeleteGod bless you, Courtney, and your sweet little man. Thank you for sharing him; he is such a blessing.
ReplyDeleteI just watched all of your videos of Tripp. I was especially entertained by his aug 16 th concert because it is my birthday. I have been serenaded by an angel. What a sweet & smart boy! Thank you Paula for bringing Tripp to my life. To Tripps Mom Grandmom other family friends & docs - god bless you all. God bless you too Trip however you are truly the most blessed. Thank you soo very much for sharing your very special boy & family.
ReplyDeleteI have been checking your blog for a while now. I too have a 2 year old, and I'm in shock over how musically talented Trip is. My 5 year old son can't drum that well, and he loves music. What a gift and a sweet memory!
ReplyDeleteSo sweet!
ReplyDeleteCourtney, You are an amazingly strong Momma. I love hearing your updates on Trip. I'm trying to round up some people to walk/run with me in Michigan for a 5k which the money raised goes to EB research. http://aubreys5k.com/
ReplyDeleteI'm excited to do this in honor of kid's with EB such as Trip and a friend of mine who also had a child with EB.
Courtney, he has such great rhythm. Most definitely a little drummer boy! God given talent and a heaven sent blessing. Thank you for sharing your life and blessing with the world wide web.
ReplyDeleteThis is absolutely fantastic...I am speechless at his talent! Thank you so much for sharing Tripp and his story. Bless you all.
ReplyDeleteI always come back to this post, Courtney, and listen to your boy drum away to his hearts content! He never ceases to amaze me. He is such a special soul. :)
ReplyDeleteContinuing to send my prayers and hugs! xo
Ooh, Lovely videos!! <3
ReplyDeleteYour Little Dude has way better rhythm than I do! Just ran across your blog. Your son brings a smile to my face and melts my heart. What an inspiration you are for selflessly caring for him 24/7!
ReplyDelete