Monday, April 4, 2011

A miracle himself.

This weekend was kind of sad for me.  I have "those days" every now and then when reality sets in and I actually have time to stop and think.  Either about what the future holds or the fact that Tripp's current life is so incredibly different than a normal (or should I say "healthy") 2 year old's is.  It makes me so sad that I can't take him places or do things with him that healthy kids can do.  I mean, I can't even pick him up and hold him without him getting anxiety because he thinks he's getting a bath.  Then when I go somewhere... like church yesterday and see all of the kids- it makes me sad.  I'm normally okay about it and can deal with it, but sometimes it just hits me like a ton of bricks.  Especially when I see kids who were born the same time as Tripp, whose Mommies were pregnant at the same time I was.  That's a hard thing to see. 

I realize that people who have healthy kids don't really have a chance or a reason to stop and think about how much of a blessing it is for them to be healthy.  But being on the other end, I swear I think about it every single day.  Somedays I can face reality and other times it slaps me in the face.  I would give anything in this world for Tripp to be a normal, healthy boy and be able to run around outside, go get a snowball, ride his bike, eat cheerios, brush his teeth, or sleep cuddled up next to me without machines on or worrying about getting a blister.  Sometimes I just look at him, and I try to picture what he would look like if he didn't have this horrible disease... no sores, his eyes perfect, fingernails, toenails, little chunky thighs... and then I have to take myself back to the reasoning that God has a plan for him.  And it's not right for me to picture what he would be like "EB free," because he was never meant to be "EB free." He wasn't meant to have fingernails and toenails.  He wasn't meant to be able to speak like other kids.  He was put here to touch and change lives... even if it's one person at a time.  And I see what he's done just in our community.  I see the people that have come together to help us, the people who have come into our lives that we otherwise would have never met, and the sacrifices people are making to help make our lives just a little bit easier.  

It's so horrible when you actually take the time to stop and think about what's going on and how much Tripp is suffering each day (and thinking about how much he's suffering and actually SEEING him suffer is totally different)- but I just don't have any other option than to focus on the good that is coming out of this.  I mean, what does focusing on the bad do?  It leaves me sad and depressed and unable to be happy for Tripp.  And that's not an option (But like I said, I'm certainly allowed my one meltdown a month or so, I think).  So once again, I want to SINCERELY THANK everyone who has been so supportive- your kind words, emails, letters, etc.  You may not think that it's doing anything.  But each word gives me just another push forward... literally.  I'm so blessed to have the support that I do.  And I know I always say that... but it's SO SO true.  I can't imagine going through this without so many people, who have played so many different roles in my life. 
I AM SO GRATEFUL.  Seriously, I am. 

On another note, Tripp's beautiful, wonderful ENT Dr. Rodriguez made a house call on Thursday.  She said she had been thinking about us and had an idea that might help Tripp's breathing.  So she brought over a bigger sized trach (which is still not the size that a normal 2 year old would wear), but it at least gives him a larger hole to breathe out of.  It's a 3.5 in diameter instead of a 3.0.  And it does seem like he is breathing much better.  So far none of the noisy, wheezing breathing.  The only thing is that my suction catheters are just a tad too small and don't really "do the job" like they did with the smaller trach.  But he is getting to the point where he can cough pretty good on his own, so he helps out a little.  Except when he's sleeping and laying down.  

Anyway, I have a few more videos that I took after I posted all the others.  He's always been a dancer and a booty-shaker, but in the past couple of days, he's been REALLY getting down.  Like throwing his arms around to the tune of the music.  I swear there is nothing in the world that can melt your heart more than seeing this kid SO happy and playful with all he goes through.  
I keep saying that I'm waiting for a miracle... 
but he's already a little miracle himself.

 Check this one out.. it's my favorite to date. Listen close to his movements and the words in the song. Also, he's "clicking" with his tongue as he's dancing ever so cute:)

This is his little "play area."  (I want to get rid of the big green and red tub, but he loves it cause it makes sounds when he bangs) But anyway, he walks all the way down to "spin" the ABC wheel, then walks all the way back to his drum and beats to the tune of it.

Dancing to 1, 2, 3, 4 on Elmo.  I can't catch him all of the good times that he dances and shakes to the exact tune, but I think I caught a little of it.  I think in this one if you listen close, he's "clicking" the tune with his tongue, too.  

Grammy "fake chewing" bubble gum, blowing the bubble, and popping it.  
Look at him "chewing" with her:)
This is a short clip, but he will laugh at this for hours!
And it sometimes helps him not to cry for diaper changes:)
He especially loves when MeMe really chews gum and pops it. 



  1. Did you see the shirt Patrice posted about.....its brilliant. And even though I am here at your blog because of sweet Bella, I think of you and tripp everyday....
    Now, I gotta get off this phone and on my computer to watch those clips!

  2. Hi Courtney, I too came to your blog because of Bella and think about you all often. Recently, in my blog journeys I came across this: and your post tonight made me think of this. I think it sums it up perfectly and puts into words what you and others sometimes fail to be able to convey. Lots of love you to you guys!

  3. oh my goodness.. precious precious videos!

  4. P.S. I have a hard time putting into words those bad days and wishes and dreams you have to adjust for your child. Our journey is nothing compared to yours, it is still difficult. <3

  5. Oh my gosh, he gets cuter every day. And my 14 year old daughter, who has RDEB, thinks Tripp is just the cutest kid ever.

  6. Oh he is just the sweetest thing, shaking his booty!! He's an awesome little dancer : )
    Little Tripp makes me smile so much everytime I see his pics and videos, thanks for posting!!

  7. Courtney, first of all, Tripp is the cutest, wiggliest, best booty-shaking boy ever! I had to watch the videos with the sound muted because my husband and son are already asleep in our room, and I was trying so hard not to laugh out loud. He is so darn funny!. And secondly (?), I, too, just had one of those moments when I tried to imagine what's it like to be in my son's shoes and I was so devastated. It's tough, I know. I just thank God that our sons are tougher.

  8. Tripp is the most adorable, smartest and cutest boy ever! He's so smart and I really love watching him dance and click his tongue with the music. And he really loves music! :) He's the cutest! God Bless you! Stay strong! :)

  9. OMG- his rhythm is AMAZING!!!
    Thanks so much for sharing all these Court!

  10. I actually think he is musically gifted. I am NOT kidding. Incredible when he was beating to the ABC song, perfectly!

  11. Every time I read your blog, I just can't believe how incredibly strong of a person you are. It brings me to tears. Tripp is always smiling despite his suffering and trials, and that says a lot about his sweet momma! It is so true that he has touched so many lives, so many hearts and has made people who have 'normal', 'healthy' babies to think twice about how truly blessed and lucky they are.

    Please know that I truly look up to you and think you are so inspiring. You have such a beautiful little boy. My husband loves to watch your little videos that you post of him. We loved watching him shake his little booty, and man has he got some rhythm!

  12. THIS IS THE BEST POST YET. His rhythm is perfect, he has awesome moves, and he is a scream. I mean, when he beats part of it on the drum, and part on the furniture...genius. What a sweet, fun post to see...thanks for making me laugh out loud, I absolutely love him. I cannot imagine the hurt involved in all this, but the good times are absolutely beautiful. I am so tickled and impressed.

  13. Okay, Court, this one made me cry like a baby! You are such an incredibly strong person and I wish everyday I could take away yours and Tripp's pain. I am so incredible blessed to have had the opportunity to witness both of your journeys through this. You are right, those of us that were blessed with healthy children have taken that for granted, I know I did everyday before you and Tripp. Now, you both have inspired me to be more patient, loving, understanding, kind and a lot closer to GOD, so I thank you for telling your story and sharing your miracle baby with all of us! We love you both very much!

  14. oh my goodness. he is the cutest! i love how he dances to 1-2-3-4. your boy has some mad dance skills :)

  15. Wow ! He's sense of rhythm is just amazing for a 2 year old !! And he really knows how to move his butty ! hehe ;)

    All the best for you xx

  16. SO ADORABLE!!!!! They are all such cute videos, Tripp your an awesome little dancer.

  17. Courtney, I haven't commented before, but this is Chelsea, my husband is in Brittany's husband's squadron. You have NO idea what an impact Tripp has had on me. He makes me so very grateful for every day in my life. And you inspire me to be the kind of mother who is grateful for every day. You are so strong (at least most of the time, and that's perfectly ok), and thinking of your strength and wisdom and trust in the Lord, that helped me through losing my sweet Job. Thank you for sharing yourself and Tripp with us, he is a little miracle who is reaching people daily.
    The videos are adorable, what joy and happiness and love in the face of adversity! The Lord has blessed that amazing boy with a strength and understanding beyond what we know. Keep strong little Tripp, we all love you.
    Chelsea McCown

  18. He is so precious! I've never met you guys, but I just love you both. You have touched my life in such a way with your strength and beautiful heart. You are both absolutely amazing. Will continue to pray for you guys!

  19. He is unbelievably musically gifted!! I have never seen such a sense of rhythm in a 2 yr old! He is amazing! I loved, loved , loved these videos. What an absolute cutie patootie!

  20. Courtney, You are an amazing momma and you have an amazingly talented "booty shaker" with rhythm. Thank you for taking the time to blog and post videos of your precious lil one. He brings so much joy to my soul watching him enjoy "life". I will continue to keep you all in my prayers. Stay strong and keep the faith...Love you guys...
    Mrs. Pat

  21. You are an amazing mother and you are right...your son is a miracle. He is changing lives every single day. I only recently started reading your blog and your sweet little boy has touched my heart in a profound way. We have a son who is turning three next month and he has a terminal illness so I know what you mean when you have those bad days. I have those too. As a mother you want to rake away all the hurts and pains and to watch you child suffer can be so overwhelming and so heartbreaking. My prayers are always with you and Tripp.

  22. May the Lord continue to bless you richly and may you not only know His Presence with you, but FEEL His Presence as well.

    I do not know your pain as felt with your situation with Tripp, but I certainly know what it is to watch my son suffer and feel helpless to give him what he needs. It has been through that pain that the Lord has shown me, as He has shown you, what beauty and wonder He is using my son to bring forth into the lives of others. Press on in faith and know that you are lifted in prayer by so many!

  23. Tripp is DEFINITELY musically gifted!!!! OMG!!!! I was just amazed by watching that!!! He is such a sweet miracle....keep clinging to the Lord Cortney...he will supply you with the strength you need:) You are one awesome Mommy indeed!!!

  24. hi Courtney and Tripp,

    I lurk here, and have for a long time - at least I don't remember commenting before - but I LOVE the videos (especially the one at the very top, when I first started to scroll down it was a still frame and Tripp's arms were flung in the air, and I could just tell he was doing something fun!) and your writing. You are truly inspiring, both of you.

    Thinking of and praying for all of you-

  25. Courtney,
    Tripp is very musically gifted, as many others have said. His sense of timing & rhythm is incredible. Is there possibly a music therapy available for him? Maybe someone who could come to your home and do music & rhythm exercises with Tripp. He would love it!
    Know that you are a great mom and you, Randy, your parents and all Tripp's family are in my prayers.

  26. Courtney... What a gem he is!! He totally keeps the beat with the music~ such great talent!! I wish I lived near you and I could visit with some music in motion!

    I agree with you ~ He is already your little miracle. God does have a plan, for you and for Tripp. God has certainly chosen wisely when he placed Tripp with you my dear. Hugs and love to all of you~ Diana

  27. Wow. Seriously he is the most precious thing i've ever laid my eyes on!!!!! His dancing is just to die for! That baby sure is an angel. And so is his mother, grandmother and the rest of your amazing family! xoxoxoxo :)))))


    the last one. i cant handle it.


    hes brilliantly musical.

  29. I'm in love with this sweet boy. He's the most amazing dancer that I've ever known. Tripp is unique. He is a real miracle (at the same time very amusing miracle ;) ).
    Courtney, unfortunately my english is enough poor to express how much this kid touched my heart. Just know that I think about your family every day and pray for you!

    With love,
    Marina (Russia-Italy)
    P.S. Kisses to my little hero Tripp

  30. Wow! Tripp has some crazy rythym...most adults don't have half the rythym he has. I was so impressed with his abilities, I had to share the videos with my husband (who thinks I spend way too much time on the computer) :)
    I am pregnant with my 1st baby, Courtney, and I hope that I am half as good a mom as you are!
    Keep praying for that miracle!
    Chicago, IL

  31. Cutest videos EVER!!! Man Tripp is so dang cute!! I just want to come give ya'll big hugs!! Ya'll are my heros!!

  32. Hi Courtney-

    LOVE that booty-shaker! That is SO sweet! And Tripp has some serious rhythm, too - musical genius in the making! I think someone else commented about music therapy, but I wonder if Tim would be able to recommend anyone (of course you KNOW he'd be there himself if he could!) :)

    I'm so sorry it was a hard weekend for you. I wish I had the right words, or more importantly, a cure for this dreaded EB. Please know that you are loved and prayed for here in TX - my kiddos ask about Tripp all the time and pray for him, too. You are an AMAZING mom!

    Love from TX,

  33. Long time reader, first time poster....

    The boy had RHYTHM!!! Wow!! And his little butt shaking as he dances is too darn adorable!! Thank you for sharing those videos - they made my day!!

    Tripp most definitely does have a hard road ahead of him, but I get the feeling he's a happy little soul despite it all. I am so glad you "share" him with all of us!

  34. That boy's got some moves and can keep a beat like nobodies business! I love love love seeing your videos.

    Your strength and outlook on life has been such an inspiration to me. Going through live always has it's ups and down and problems and you sharing Tripp with us has helped me focus on what's most important. Tripp is so strong and courageous, he inspires me to stay strong when things get tough.

    Thank you again for sharing him with us!


  35. I check in on Tripp's progress all the time, but I've never posted. I just had to after watching these videos. He is SO amazing, Courtney. So very, very amazing! He is touching so many lives!!

  36. I so adore the Tripp videos. I love watching him do his thing(s), and it always puts a huge smile across my face. There's something special in the things he does I can't name, but he's got tha rhythm down...I just love it! Thanks for sharing!

    Music is so food for the soul! And you can tell he loves it!

    And I love Tripp! Praying for him and his family....

  37. ...and I'm just waiting for one of his vid's to go viral!

  38. Wow his rhythm is perfect!!!! I enjoyed watching these videos and seeing him so happy! Thanks for posting!

  39. As always thank you for sharing him with us :) He is such a cutie and so smart!! I've never seen such a smart baby! He really likes his music. He is absolutely adorable dancing and has great timing. It brightens my day to see the videos of Tripp. Always praying for you and your family.

  40. I don't know if I have ever commented on your blog posts before, but I have been following it for while. I came over here from Jonah's page. I just watched the video of Tripp spinning the abc thing and then walking over to bang on his drum and I knew I just had to comment. OH MY GOODNESS is he such a sweetie pie!! He has stolen my heart! Your son is amazing!! His smile just brightens my day. I want to thank you for sharing is precious life with all of us. What a special treat! You are such a good mommy.
    Love from Minnesota!
    Tonia Judd
    P.S. WOW does he have awesome rythmn!! What a rock star :)

  41. Can't even remember now how I found your blog, but I found out about EB while watching thru some Mystery Diagnosis videos on You Tube and "The Boy Whose Skin Fell Off" was suggested - so I watched the whole documentary. And now after hearing your story and stories of others with EB, I stand amazed of the strength that you and Tripp both have. There aren't even words to describe the amount of respect I have for you. You are an absolutely incredible mother to your sweet little boy - and man does that boy have some serious rhythm! Tripp truly is a precious gift from the Lord. Know that you are both in my prayers.

  42. Those videos are adorable!! I mean, really, watching videos of someone else's kid isn't usually that interesting, especially if you've never met the kid, but Tripp is GREAT! He's so funny and enjoyable to watch dance- and what amazing rhythm. I love how at the end of the ABC song he nails the drum on the last note! And the signings and clicking.. it's all too, too much and brings a huge smile to my face. =) Thanks for sharing your beautiful boy with us!