Eos Night Before Christmas

December 15, 2010 at 2:30 pm 9 comments

 Eos Night Before Christmas

          ©Cara Koscinski

 

  ‘Twas the night before Christmas, when all through the house
     The pump was a whirring, and waking the mouse;

 
His feeding bag was hung by his bed with care,
In hopes that some nutrition soon would be there;

The children were nestled all snug in their beds,
While visions of eating real food danced in their heads;

 G and NG Tubes, each with their caps,
If they’re open, they’ll leak and disturb my kid’s long winter’s  nap;

When the pump started beeping, there arose such a clatter,
I sprang from my bed to see what was the matter.

Away to his side, I flew like a flash,
Tore open the covers – saw a kinked line and a rash….

I think of the time that he could eat food.
When people didn’t judge us, some are just rude.

The cakes, cookies, and foods that he cannot eat.
The dream of giving my boy just one food treat,

Has vanished and won’t come back very quick,
No one can cure it, not even St. Nick.

More rapid than lightning the vomiting came,
Eosinophils cause this disease, EGID is the name.

In Greenville, Colorado, Pittsburgh, and Philly!
In Boston, in Texas, in Florida, in Cincinnati!

They work on research, so our kids can grow tall!
Now find a cure today! Please we pray!  Work together all!

Dreams of having a typical childhood away fly,
Because of this disease, our children must cry. 

 Vomiting, pain, diarrhea, and choking,
ulcers, fatigue, another doctor-are you joking?

Enemas, laxatives, surgeries, scopes,
Steroids, tests, biopsies, IVs-yet our kids have hope!

Just when you think this disease has calmed down,
Our kids are faced with another re-bound.

Insurance won’t pay for his special food,
We must fight for everything, we hate to be rude;

A pump and some formula flung on his back,
And another day goes by with him wearing his pack.

His eyes — how they twinkle! His laughter– how merry!
He cannot take even one taste of dairy!

Just a little bit of food he can’t chew with his teeth,
We must steal food away from him like a thief.

One or two safe foods, we learn to cook.
Expensive food stores, all of our money, they took.

Someday he’ll be chubby and plump, like a jolly little elf,
And I’ll laugh when I see him, in spite of myself;

Until then, we all will continue to fight…..

“Merry Christmas to all, and to all a good-night.”

 © 2011  Shared with permission

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Entry filed under: EE or Eosinophilic Disease, Occupational Therapy, parents. Tags: , , , , , , , , , , , , , , .

VISUAL learners A Life Without Food, Joshie’s Story

9 Comments Add your own

  • 1. kloppenmum  |  December 15, 2010 at 3:06 pm

    That’s a journey. Thinking of you.

    Reply
    • 2. route2greatness  |  December 16, 2010 at 5:44 am

      It is a journey! We are blessed to take it with our kids. Thank you!!

      Reply
  • 3. Colleen  |  December 15, 2010 at 7:23 pm

    GREAT job
    May I share on my blog?

    Reply
  • 5. Jacqui  |  December 16, 2010 at 9:22 pm

    Absolutely beautiful!! Our entire family loved it!! You are a beautiful mom and an awesome friend!

    Reply
  • 6. Anjeanette  |  December 20, 2010 at 6:50 pm

    Saw you linked this on Tara Ross’s Facebook. I am in tears! My son and I both have EE and this just touches my heart. (Hope you don’t mind I am linking it on my Facebook page.)

    Reply
    • 7. route2greatness  |  December 20, 2010 at 8:13 pm

      Thank you for writing! Please post on you fb page. Have a WONDERFUL holiday!!

      Reply
  • 8. Kim  |  January 9, 2011 at 8:32 pm

    Thank you for blogging and sharing information about EE. Because of you and others that have shared personal experiences, I have found some answers and have found it therapeutic to research about EE online. I decided to write my own blog about my experiences with my son who has EE. If you want to link it on our site, I can reciprocate too!
    http://ahardjob.blogspot.com/

    Reply
  • 9. Marissa  |  December 14, 2011 at 6:28 pm

    This is so good…brought tears to me eyes. My daughter was recently diagnosed with EE, and it helps knowing there are others out there. Hugs.

    Reply

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