"Quod me netrit me destruit."
What nourishes me also destroys me.

Tuesday, June 19, 2012

So, I'm Not the Only One?




It's been 6,816 miles and more than two months since we've arrived to make Westport, Connecticut our new home.  It's been a tough ride for me.  We haven't lived in the States for five years and I miss our old life and friends and routine back in Dubai.  In many ways, Zane has been my rock.  His illness has gifted him with resilience and optimism that is infectious.  He is also a pure blooded extrovert.  The only thing he loves more than people . . . is meeting new people.  He is as gregarious as it gets.  He does miss Dubai as well and does express that.  But, he sees so much positivity here.  I have asked him if he likes his new or old school better.  He says, "That's a hard question because I like them both."

When we arrived in Dubai, Zane was a year old and was diagnosed when he was a year and a half.  So, everyone in Dubai he grew up with also grew up with his EE.  They knew him when he was symptomatic.  They supported us when he was diagnosed.  They learned along with us what his diagnosis meant.  They helped us through food trials and cheered when he had a clean biopsy.  They cried for him when he had his g-tube surgery and watched him in admiration when he got strong again.  The kids at school didn't blink twice when he was being tube fed in his class at school.  Although, it did bother him at times that he was the only child at his school with a special need.  He was the only one that was different.

So, Zane's major source of anxiety was that first day we went to visit his new school.  He was terrified.  He didn't want to go and kept saying that he wanted to take out his feeding tube.  He was so worried that kids in his new school wouldn't like or accept him because he can't eat like they can.  He was afraid that they would make fun of him for having a feeding tube.  I had him hooked up to his feed pack when we arrived at school.  He begged me to disconnect him so the other kids wouldn't see he has a feeding tube.  So I did.

Normally, Zane is a chatter box and is pure kinetic energy.  But, walking into that school for the first time he was silent and barely moved.  He held tightly onto my hand.  I could feel his hand shaking in mine.  I could feel his tension and anxiety.  His principal walked us to the nurse's office and then to his new class room.  He was terrified and would not let go of me.  The kids in the class were so excited to have a new student and were all clamoring around him introducing themselves.  They were all asking Zane a million questions all at once.  Zane was overwhelmed and just smiled silently.  He seemed mentally preoccupied.  At one point, Zane's teacher said, "Zane, what's your favorite book to read?"

"I eat through a tube in my tummy, " he responded.

Now, imagine being a five year old boy in a new school for the first time.  You have a feeding tube.  In your world that is the only thing that matters because no one else out there is like you.  Everyone is surrounding you.  You are an oddity.  You feel like you're trapped in a fishbowl.  All Zane was thinking about was that feeding tube in his stomach.  He couldn't enjoy the experience or take anything else in until he knew how the others would or wouldn't accept him for not being able to eat.

Then all of a sudden, Zane finally noticed that there were other kids that had special needs like him.  One boy in the class had cochlear implants and the teacher wore a microphone that transmitted her voice to his implant so he could hear her.  Zane looked so relieved.  He said, "Mommy, that boy has a tube in his head and I have one in my tummy."  That little boy became Zane's hero.  He sat next to him everyday.  Zane talked about him constantly and they shared playdates.  He later learned that there was a boy with an insulin pump.  There were kids with facial and physical deformities.  There were kids with learning disabilities.  "I'm not the only one, Mommy!" he said when he came home from school one day.  When he recently met a boy with Down Syndrome he said, "I'm lucky, aren't I, Mommy?  My disease isn't so bad."

We recently celebrated Zane's 6th birthday.  I can't believe how far that little boy has come in six short years.  It's been an amazing ride and I am so incredibly blessed to have him for my son.  We'll be starting food trials again soon because the steroids aren't cutting it anymore and Zane wants more diversity in his diet.  It'll be tough.  I know the emotional roller coaster ride it can be to have to trial foods.  But, hopefully we can find things that won't make him sick and we can get this EE back into remission.  So, send lots of positive vibes and healing energy Zane's way.  We'll be needing it.

Signing off from the States.
Nancy
An EoE mom

6 comments:

  1. Dear mom, reading your blog i feel that you are the best mom and zane is the best and luckiest child in your care. Dear mom zane is in my prayer... Have great faith in LORD JESUS CHRIST!

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  2. As a mom of a child with EoE myself, my heart goes out to you. My 5-year-old child has been eating a "smoothie" made of red lentils, butter, rice, and yogurt all her life (5-6 times a day, 7 days a week). We've been reading the literature on dietary modification as it seems to be yielding promising results. I wish you luck in your journey, you aren't alone in this!

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  3. Eosinophilic esophagitis affects both the young and the old. While it may disguise itself as a food allergy in the young, older patients have recurring GERD and acid reflux as a common denominator among others. The bottom line is, have yourself checked to rule this out. Only a biopsy will confirm it, so it takes more than a simple talk with your doctor to say if you have it or not.

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