Tangi Lifestyles April/May 2011 : Page 19
D e a re st Tri p p, E a c h d a y w h e n I l o o k i nt o y o u r e y e s, I f e e l s o g u i lt y. N o t b e c a u s e I t h i n k t h a t it ’ s m y fa u lt t h a t y o u a re s u f f e ri n g , b u t I f e e l g u i lt y b e c a u s e I a m h e a lt h y. I h a v e p e rf e ct e y e s ig ht, I h a v e h e a lt h y s k i n, I h a v e m y f i n g e r n a i l s a n d t o e n a i l s, a n d I c a n b re a t h e e a s i ly w it h o u t h a v i n g t o st ru g g l e f o r e v e ry b re a t h I t a k e. T h e s e a re s o m a n y t h i n g s t h a t s o m a n y o f u s t a k e f o r g ra nt e d e v e ry s i n g l e d a y. -Excerpted from Courtney’s blog, “EBing a Mommy,” February 4, 2011 Photography by Summer Bo yd AprIL-MAY 2011 19
Each day when I look i nto your eyes, I feel so guilty. Not because I think that it’s my fault that you are suffering, but I feel gu ilty because I am healthy. I have perfect eye sight, I h ave healthy skin, I have my fingernails and toenails, and I can breath eea sily without h aving to struggle for every breath I take. The searesoma ny things that so many of us take for granted every single day.
Onchatoula-native Courtney Roth is 25 years old, a nurse, and stay-athome mom to son Tripp, 22 months. On good days, Tripp plays his drum, shakes his bottom, and commands anyone in the room to snap their fingers along with him. On bad days, though, he listens to his mom sing to him, rocking back and forth, while they wait for the morphine to ease his constant pain.
Tripp has Epidermolysis Bullosa, or EB for short. It is a rare genetic disorder that causes his fragile skin and mucous membranes to blister with any friction; his tiny body is covered in raw, red sores.Courtney must keep everything bandaged, salve for his head, hands and feet, all of which have blisters, just not as severe.
When Tripp was born, physically he looked perfect, except for one large blister that covered his head and very long fingernails.
But shortly after Courtney delivered, doctors told her and her husband, Randy, that Tripp probably had EB, a disease that affects about one in two million babies. Doctors predicted Tripp would not live to see his first birthday.
Soon, the disease began to ravage Tripp’s insides as well; at about three months he had to have a feeding tube inserted into his abdomen because sores inside of his mouth made it impossible for him to eat. Shortly after, a tracheotomy became necessary for Tripp to breathe, although his breathing is still labored.
EB requires round-the-clock care, and while Courtney tends to him daily, Randy and both grandmothers also ensure Tripp receives excellent care. Doctors credit Courtney’s meticulous care for extending Tripp’s life this long.
Bath time is particularly harrowing, since all of the bandages must come off, exposing Tripp’s wounds, then reapplied along with Several ointments that prevent infection. The process can take up to three hours.And in spite of the difficulties EB poses for Tripp and the rest of the family, Courtney is quick to count her blessings.
“We have learned with time that every day we have with our little boy is a gift from God.He was sent to us for a reason and he was put on this earth for a reason. He is an angel.The joy of my life, what I look forward to every day,” she writes on her blog.
In a recent news feature on Tripp, She admitted to WWL reporter Bill Capo that she doesn’t get out much; when she wants to eat out, they order in. His pediatrician, Dr. Lisa DeFusco of Ochsner Rothschild Pediatrics, makes house calls and the pharmacist delivers the many prescriptions that must be administered to Tripp.
Dr. DeFusco, also interviewed for the story by WWL, noted Courtney’s strength and courage in the battle for Tripp’s life.
“She never says, ‘Why me?’ Not once since I’ve known this family has she looked at me said, ‘Why did this happen to me?’” Dr. DeFusco said.
Instead, Courtney is thankful for support system she has found in the blogosphere and in prayer.
“It’s touching that so many strangers who don’t even really know my situation are so supportive,” Courtney writes. “I’m blessed with the best support system I could ever ask for.”
Not one for complaining or taking time for herself, a recent blog post asks readers to forgive her absence; Tripp has had a few good days in a row, and she’s used the down time to “de-stress.” Also, she invokes their prayers for two little boys with EB without supportive families to tend to them. She writes:
“So there’s something that’s been weighing so heavy on my heart lately. And if I’m going to be honest, I really am not crazy about doing this kind of stuff on my blog, but I feel like it’s important to ask you guys for a favor. Not for me, but for [two] kids who are battling EB alone, without a family.”
She goes on to tell about Carson and Anton, and the families with the heart, but not the finances to adopt them.
It’s hard to imagine having to endure such a horrific disease alone. Courtney hopes that by raising these two boys’ issues, they can enter into loving families more like her own.
“Tripp is one lucky little boy to have so many people who love and care about him,” she writes.
Courtney also notes that it is easy to forget that while Tripp isn’t physically where other children his age are, he is fully intact mentally. She adds:
“I know that he understands me when I tell him how many people out there are praying for him.”
Read the full article at http://www.ammaxdigital.com/article/Courtney+Roth/684844/65575/article.html.