Remembering Baby Tripp, 5 years later, now 6 years

I was scrolling through my blog posts from January 2012 and was taken back to the story of Tripp Roth as seen through the eyes of his mommy.  Tripp had a terrible disease that caused so much pain and suffering and died in January 2012 from this thing called EB.  Through it all his mom, Courtney, shared the story by blogging and granting some TV interviews on local TV.  While caring for this precious child, Courtney demonstrated so much strength and grace and love for God and fidelity to our Catholic faith.  Everything about this story was inspirational to me and so many others.  In her loss, Courtney demonstrated so many things that we all need to embrace.  So curious, I clicked on her blog today to see if she was still blogging and it appears she may have stopped about a year ago when she blogged beautifully on the 5th anniversary of baby Tripp's death.  I am thrilled to see that she has remarried, after receiving an annulment, still loves her faith and has two beautiful baby boys, younger brothers to beautiful Tripp.  So here is that post from January 2017:

Five years.

It's been FIVE years since my baby took his last breath in my arms.
This has been a tough one to swallow.  I'm at a crossroad between being so happy with my 2 sweet boys and being so sad because I am missing one of them.

I still remember the night before/morning that Tripp died.  He was doing so bad.  I knew it was coming, I just didn't know how much longer we had.  The night before, I put him to bed like normal and fell straight asleep with him.  Usually, a typical night would consist of me waking up and having to suction him about every 20 minutes, but the last week or so he had been so exhausted and he's breathing was much more shallow, so we weren't waking as much through the night.  But this night, I woke up at about 3am, just out of the blue, looked over at him (he slept right next to me in my bed) and I knew it was close.  He was pale, more swollen and breathing so shallow.  And for some reason, I never panicked.  I was actually very calm.  I grabbed his swollen little hand in mine, and I started whispering to him.  I told him how very much I loved him.  I told him how proud I was to be his mommy and to be able to call him mine.  I cried. A lot.  And I told him that I didn't know if I could make it without him.  But that I wanted him to be free of his pain and never have to hurt again.  I made a promise to him that I would try my hardest to get to heaven so that I could be with him again.  And I asked him to watch over me, because I was going to need it.  I cried and cried and kissed him a million times.  Then I started to pray.  I started a rosary, and I'm pretty sure I fell asleep before I finished it... with tears in my eyes and his hand in mine.

Then I woke up... on my own, without waking to the sound of his trach.  I looked over and I panicked.  He was so pale, slightly blue.  I jumped out of bed and ran to the other side.  I felt and listened closely and he was still breathing, but things were just different.  I ran for my mom, who followed me back in the room and we picked him up gently and brought him into the living room into his rocking chair where we spent all of our time.  I was panicking.  It was nothing like the peaceful feeling I woke up to in the middle of the night.  We were both in tears and not sure what to do.  But as always, Tripp coached us through and ever so gracefully and peacefully took his final few soft gasps and then stopped breathing.  In my arms.  In the rocking chair.  With my mom kneeling beside us.

And I didn't imagine it then (because I was hysterical), but I can imagine it now, that he left his tiny, lifeless body and looked down at us and smiled before the angels led him straight up to heaven.  I just  get chills thinking about his little soul, so mighty and so brave, and finally free of pain, making it's way back to Jesus... and Jesus saying, "well done my child."

When I think back on his death and the way everything happened, I am so grateful for that peaceful hour I spent with him before he died.  I know he could hear me.  Even though he didn't move a muscle.  I know he knew how much I loved him.  I may have been lacking at some things, but I ALWAYS told him and showed him how much I loved him.  And he definitely reciprocated that love back to me.

I'm not sad because Tripp died.
I'm sad simply because I MISS him.
I miss the joy he radiated in the room.  I miss the way he made me feel.  Even when I had the whole mom thing wrong or when I was stressed to the max, he made me feel like I was the best mom in the world.  And I know that sounds silly because he was only a baby, but he knew me.  He could read me and my feelings like a book.  When I was sad, he was so calm and still.  Almost like he was sad too, or like he was trying to calm me down.  And when times were happy... he made them oh so extra happy.  With that drumming, or "lip" singing or dancing he would do.
Tripp lived a life of suffering.
And he LOVED life.
Gosh, he is my hero.
The times that he cried were few and far between.  He only cried at bath time, and rarely ever even cried during dressing changes (until the end).
He was the definition of strength.
And he gave me the strength every day to carry my cross, as I watched him carry his with such grace.

I see so much of Tripp in Crew and Nash.
It's like he kissed both of them on the forehead before he sent them down to us.
I wish with all my heart he could be here in our arms, in our house, with us and his brothers.
But deep down, I know that was never meant to be.

I am so grateful for my faith.
I think about parents who are walking in my shoes all the time.
Do they believe in God?
In heaven?
In eternal life?
If they don't, I don't know how they survive.
Literally, like how are they breathing?
I've had ONE dream about Tripp since he died.  And I wouldn't call it a dream, it was more like a nightmare.  I was driving in my car and someone called me and told me that they saw Tripp (that he wasn't actually dead- he was still alive)...  I won't give all of the details of the dream, but it consisted of lots of panic and crying and hysteria.  I woke from that dream soaking wet and sobbing.  And for that first 5 seconds of waking, I actually thought it was real life.
I imagine this is what every day life is for someone who has lost a loved one and doesn't believe in God and in heaven.  Like a constant nightmare of wondering where they are.
Without my faith, I would be in a dark, dark place.

This five year anniversary of Tripp's death has been hard.
And there is NOT a day that goes by that I don't think of him.
I feel that I've made huge progress in the last 5 years.
But no matter how many children Stephen and I are blessed with, or how many years go by, these anniversaries will always be sad, the holidays will always be bittersweet and I will forever be looking forward to the day when we are ALL together- with no more suffering and no more tears.
But until then, I will obsess over and love and kiss and hug on these 2 little godsend blessings as much as they will physically let me... knowing that their big brother is smiling down on them.
Thank you, Jesus.

I love you all.
Thank you for loving us back.

Remembering Baby Tripp

Remember Baby Tripp?  I posted many stories about this courageous little man and his equally courageous mother.  Tripp lost his earthly battle with EB about 8 months ago.  His mom carries on; with fond memories and everlasting love for her baby boy.

Watch:  http://www.wdsu.com/news/local-news/new-orleans/Baby-Tripp-s-Mom-Talks-About-Her-New-Journey/-/9853400/16668926/-/eygxh0/-/index.html

Continue to pray for her and for all those who are impacted by EB and other deadly diseases that take our little ones all too early!

Angel Baby Tripp laid to rest today

 Angel Baby Tripp Roth laid to rest . wwltv.com

Doug Mouton / Northshore Bureau Chief

PONCHATOULA, LA -- Friends and family said goodbye to little Tripp Roth Wednesday. The 32-month-old child was laid to rest. He died Saturday.

Hundreds filled St. Joseph's Catholic Church in Ponchatoula.

"It's a touching story," family friend Chris Benson said outside the church. "It hits home. We all have kids. To put yourself in Courtney's shoes, it's something. You can't describe it."

Courtney Roth worked tirelessly to tell Tripp's story and raise awareness of Epidermolysis Bullosa, or EB. It's a rare tissue disease that causes very fragile skin, so even minor frictions cause major cuts and blisters.

"If you're looking for something positive out of a very difficult situation," State Representative and family friend Tim Burns said, "causing awareness, and their courage in bringing this to the forefront, and showing it for the painful truth that it is."

"I think the lesson that most people get is to count your blessings, things can be so much worse," family friend Joe Benson added. "He managed to smile on a daily basis with all the pain that he was in."

Many at Tripp's funeral service wore red, the color dedicated for EB awareness. And many came in large groups, like the entire Ponchatoula High School basketball team. The Green Wave practice uniforms bear Tripp's name, and they have dedicated their season to him.

"Last night, before the game, they knew from weekend that Tripp had passed, so it was an emotional game last night for us, and that's the best I've seen them play," Ponchatoula basketball coach Dustin Easley said of Tuesday night's win over Slidell, and the effect Tripp Roth has had on his players. "It motivates them. It really teaches them a lot in life, and that's what I've got to do as an educator and as a coach, reach my boys not just for the floor but things in life itself, and it's just really taught them to appreciate everything, and don't take anything for granted."

Tripp's story has spread far beyond Ponchatoula. Courtney Roth's, randycourtneytripproth.blogspot.com, has recorded more than five million hits. One flower order came to Ponchatoula Wednesday from Sweden.

"It's a testament to how he has touched the world. Not just little Ponchatoula, not just his family and friends, but the world," family friend Chris Benson added.

http://www.wwltv.com/news/northshore/Angel-Baby-Tripp-Roth-laid-to-rest-137621998.html

Remembering Tripp through the words of a mommy

Saturday, January 14, 2012

Heaven's little drummer boy.

My precious angel received his wings today. 

I have had many nightmares about having to write this post. 

He was exactly 2 years and 8 months old.  

It happened within minutes of me picking him up out of bed and rocking him.  

He took his last peaceful breaths in my arms, in his most favorite spot. 

My heart literally hurts more than I ever thought was possible. 

I'm completely lost without him and don't know where to go or what to do when my feet hit the floor.   

I miss him so much it physically hurts. 

Please don't forget to thank God for the PEACE we prayed to him for. 

And please bear with me as I try to pull myself together. 

I will let everyone know as soon as I decide on the details of his services. 

Thank you all from the bottom of my heart for the support through this unbearable time.

I know he's flying high, pain free, and talking Jesus' ear off... 

But that doesn't take away this selfish feeling of wanting him back in my arms. 

I love you, Bubby.  

Mommy misses you more than I promised I would...

I hope Jesus loves your drumming as much as we all did. 

http://randycourtneytripproth.blogspot.com/

 

 

 

Yesterday here on my blog I reported about the death of this precious little angel who lost his battle with EB but gained his peace and pain-free eternity with Jesus in Heaven.  The above post is taking directly from the blog his amazing mother kept and these are her words as she comes to terms with Tripp's passing.  The link provided will give you an opportunity to see some of her previous posts, pictures of Tripp and even information about this rare disease.  You can even find a link to donate towards research for this disease and hopefully soon some information about arrangements.

 

Please pray for Courtney Roth and for everyone who loves and misses Tripp.

 

 

Local angel: Baby Tripp no longer in pain!

 "Angel Baby" Tripp Roth loses battle with rare skin disease . wwltv.com
Posted on February 15, 2011 at 11:04 PM

Baby Tripp Roth lost his battle to this rare skin condition this weekend. Bill Capo profiled Tripp and his mother Courtney in a series of stories on Channel 4, as well as on the outpouring of love and support for the family. This original story was published in February 2011.

Bill Capo / Eyewitness News

TANGIPAHOA PARISH, La. -- In a quiet, pastoral corner of Tangipahoa Parish at the edge of Ponchatoula, the "Wash Your Hands" sign on the front door is the first hint of the desperate battle underway inside the house.

Courtney Roth spends much of her day, every day, in this rocking chair, holding her 21-month-old son Tripp in her lap. He is fighting for his life. The slightest touch can cause severe skin reactions, so his tiny body is wrapped in thick bandages, ointment protects his eyes, and he has so much trouble breathing sometimes he turns blue, and now he needs oxygen.

But Courtney holds Tripp tenderly, her love for him lighting her face.

"Oh I see an angel baby. I really do, I see an angel, because I know his personality, and I've seen him grow up, and seen how strong he is and what he has been through," she said as tears formed in her eyes.

When you first see Tripp, it can be startling. Any touch can cause parts of his skin to come off and blisters to form all over his body, inside and out. Doctors didn't think he would live to see his first birthday.

"Epidermolysis Bullosa, we found out that it is an inherited, genetic skin disease that causes blisters with any kind of friction on his skin," said Courtney.

"I think it is one in 2 million are born with this, but his particular illness is the most severe form of Epidermolysis Bullosa," said Tripp's pediatrician Dr. Lisa DeFusco of Ochsner Rothschild Pediatrics.

So Tripp's face and head are covered with angry, red blisters, some caused by the movements of his own hands. Courtney said he is actually looking better.

But Tripp just wants to be like any other baby and have fun playing with his toys.

"He's a little ham," said Courtney. "Loves to play, loves music, is sassy, just like a normal 2-year-old."

He can't speak because he has a breathing tube, but Tripp has no trouble communicating with gestures and expressions, and he has learned some basic signals in sign language. He loves ice cream.

"He's amazing," DeFusco said. "I was scared the first time I had him as a patient, because I didn't know how to examine him."

Tripp has lived with pain since he was born; now it is searing, intense, constant agony around the clock. Bathing is three hours of torture, including covering his body in ointment and sterile bandages to protect it from blistering.

When we arrived, Tripp was listless, his face a mask of pain, and he only wanted his mother to hold him. His parents find it heartbreaking to watch.

"There's been months that he has stayed in the rocking chair, and not gotten up," said Courtney. "That's just his little comfort zone, but he still wants me to sing to him, and he still smiles with his eyes closed."

Every four hours around the clock, Tripp receives morphine through the feeding tube in his stomach, and 20 minutes later, he felt good enough to play. These are the times Courtney treasures.

"He has totally changed my life, for the better of course. He has taught me so much about love, and patience. How can you not have patience when you look at him, and what he is going through?"

She is just 25-years-old, wise now beyond her years. Sometimes she can't hold back the tears, but says she never cries in front of Tripp.

"He sees me cry, and he knows it; he knows I'm sad, and I can't be sad in front of him, because he deserves so much happiness."

She has a lot of support. Both grandmothers spend hours each day helping Courtney care for Tripp. The pharmacist will make deliveries, and the doctor will make house calls from New Orleans.

"She never says why me," DeFusco said. "Not once since I've known this family she has never looked at me and said why did this happen to me?"

Courtney said it's been a "long time" since she's been to a movie or a restaurant.

"We order out if I want to get something to eat; we'll order in," she said, adding that she almost never leaves the home.

Fortunately, insurance covers most of the medical bills, but every month this family spends about $1000 beyond that on everything from over-the-counter medications to the fleece-lined diapers that Tripp must have, $25 apiece.

But right now one of the big concerns is making sure he gets the proper nutrition. It is essential for his survival.

"He's getting all high calorie, high protein, high fat foods that I put in a blender and stick through his feeding tube," said Courtney. "Because he is using so many calories just to try to heal and breathe."

Courtney said Tripp looked so perfect when he was born, but he began developing blisters before he even left the hospital. Now he sleeps next to her, and as she watches his brave fight against the pain, she prays for him.

"Sometimes when it's unbearable, and I know it is unbearable for him, you know, you want God to just take his pain away, and he would be pain free. And then other times when he is feeling good, I want him to be around forever. But you know that he'll always be in pain even if he is around."

In this house, they don't plan for the future. Every day is a gift, especially when they see Tripp smile.

Click here to see Courtney's online journal about her son.

If you would like to make a donation to help the family with expenses, visit any branch of First American Bank and Trust and ask to donate to the Randal Tripp Roth Benefit Fund

http://www.wwltv.com/news/slideshows/Each-day-a-battle-and-a-gift-for-mother-of-sick-baby.html