2.17.2008

how we are hungry

reading this article feels like walking into that glass patio door that you were certain was open but was, in fact, closed.  here we are, writing about gluten free living, gluten free food, and how we have life-long, incurable diagnoses of intolerances, allergies and celiac disease.  here we are, never wanting for options and never truly needing to look far for the products we require to make our lives a little more "normal."  if you're reading this you're on a computer, and so GF products are no more than a click and a mail box away from you right at this moment.  

why are we so drawn to blogging?  why is it that there is such a strong grouping of GF bloggers out there?  i'd be willing to say on record that there is a thread which connects all of us gluterinis that is stronger than the bizarre immune reflex that brings us together.  we all crave community.

the foods we lose in our lives are far outweighed by the people we gain and the sense of community we feel.  there is something special about this project and there is always someone to turn to when GF life throws you a curve ball.  there are people in our lives that understand and will sit there next to you long into the evening hours because you've accidentally eaten some gluten and can't untwist your aching self and so tonight's plans have to be cancelled last-minute.  again.  and it's okay.  

we are so lucky.

we can continue our lives because we have options and we have this support.  without either of these the things that which makes us different can become unbearable, and we have to realize how important it is that these differences be changed in our minds into something that makes us strong and special.  and this brings me back to the article about a 3-year old girl living in yorktown, new york who suffers from a strange type of allergy that allows her to eat nothing.  

nothing.

little hannah has a condition called eosinophilic esophagitis, which causes her white blood cells to gather in her esophagus, which over time hardens this oh-so necessary pipe.  if life continued in this manner she faces an eventual inability to swallow, potential cracking of her hardened esophagus, and a life spent nourishing her body with a feeding tube.  she is 3 and there is very little in life that she can chew and taste, and she subsists on a formula that doesn't cause this irritation but tastes so terrible she must drink it from a bottle to bypass her taste-buds.  she's allergic to the flavoring.  and what makes things more difficult?  her insurance won't pay for the one thing she needs to be kept alive.  

we are so lucky.

i hope there is a community for this child.  i hope she finds the support that she will need when kids get a bit older and whole lot nastier and suddenly being the one that's special turns to different in her mind and life just gets hard.  kids can be demons if given the chance, and may she never know this with regard to her means of nourishment.  may she find her niche.  her group of supporters.  the ones that love her even when she can't join them in eating a meal.  may they not even notice that separation anymore, as i'm sure your loved ones barely notice what sets you apart when you gather at the table.  may she write a blog.  start a group.  gather her thoughts and help someone else who suddenly finds her child is one of the estimated 1-in-10,0000 that suffers the same.  may she be the one that makes the difference.  changes insurance.  changes her life.  and may she be the one to see all of these things and sit back and say~

i am so lucky.

1 comment:

Naomi Devlin said...

Beautifully written, tearjerking stuff. We are lucky. Keep on celebrating.

x x x x