Friday, February 4, 2011

Got the phone call

I'm not even sure what to say.  Eliana's GI doctor called.  I have to say again what an incredibly kind, caring and patient man.  I appreciated that he took the time to call, to explain and to answer questions.  I never felt rushed or silly at all with my questions. 

Even though I knew the call was coming, it still is hard to have a doctor calling with test results.  I was able to handle the call.  I've handled the day well (I think).  It hits me though in pieces. 

"Mild changes were observed in the tissue that is consistent with celiac disease"

He explained that because her numbers were so very low and the changes so mild, that it is likely that we've caught it at the very beginning.  "It has to begin somewhere" and it looks like this is it.  There is a "remote" possibility that this may not be celiac, but he didn't think so (and honestly, neither do I).  In my heart, I've just felt like this was coming. 

We have two choices:

      1.  We can accept the diagnosis and begin treatment.
      2.  We can wait 6 months and do the blood test again

Dr U explained that there is no urgency to treat this based on how early it has been caught.  Not treating it now will not produce any permanent damage to her.  Any damage that might be done with celiac's disease is reversible.  If we don't treat and begin to see symptoms earlier than 6 months, we would need to reevaluate.  Based on her results, we will want to have the rest of the family tested as well.  Either now if we are going to begin treatment for Eliana or we can wait 6 months to see her results and go from there.

So, there you have it.  Eliana has celiac's disease.  I hate writing that out.  I hate seeing her name associated with one more thing.  I hate diseases that strike children. 

Here are some of my thoughts on this.  And yes, some if it is going to sound whiny even though I know this will all work out.  I know God will equip us to handle this.  I just wish we didn't have to, kwim?

I know there are gluten-free products out there.  They are also expensive and in small packages.  (Maybe there are resources that I'm not aware of though!  I'm hoping!)  I'm going to have to get really creative in working out our food budget to handle this.  Not to mention getting creative in the kitchen.  Have I mentioned that I really don't enjoy cooking?!  LOL  Not sure why God keeps giving my kids (and me) food challenges!  And different ones at that!  I was wondering today if this is a small piece in a big picture that I just can't see yet.  He is caring for us in this way and maybe one day I will understand. 

Here is the other piece of the puzzle.  I think in some ways, I'm probably more aware of the challenges we will face due to all that I have learned with managing Joshua's diabetes.  Eating foods - or not eating them - can just be tough!  Without even going through it yet, I know it is just going to be hard. 

Food is such a part of our culture.  Its part of almost all that we do from meals to parties to church and even our homeschool outings.  Its rare that something does not have food as a piece of the event.  So many foods have gluten in them.  So many.   
Since Joshua's diagnosis, I've become so much more aware of food.  I can pick up and eat what I want whenever I want to.  I don't have to worry about what is in it or what it will do to my body.  If I'm hungry, I can eat.  It just won't be that easy for her.

I wonder not just how this will affect us in terms of cooking and preparing food at home, but how will it affect Eliana's life.  She already faces challenges that most of us don't have to deal with.  I just don't want this to be one more obstacle for her in finding her place.  I don't want this to be a barrier to her being able to go places and do things.  I just don't want this to be another way in which she might feel "different".  Now, I know that different can be good.  There are differences that I see in her that challenge, encourage and inspire me.  There is a purity of her heart that truly is a gift.  I think most of us have experienced times though when different is just plain hard.

Birthday parties,  Potlucks.  Snacks at church.  Eating out.  Summer camp.  Co-op.  And more.  Will she be included or will it just be a burden to try to provide foods for her?  Will she resent not being able to just eat what she wants?  I know that has been really hard for Joshua.  How hard will it be and will she even understand why she can't have goldfish?  Or a variety of other foods that we've worked so hard to get her to eat.  She is still so very young.

Want to hear something ironic?  I *love* carbs!  Maybe that isn't ironic as it's probably true of a lot of us.  I have 4 or 5 50 pound tubs full of various wheat products that I bought in bulk.  I use this to bake and cook with - bread and muffins mostly.  Yum!  Now, I know I can make these without gluten, but there will be a learning curve.  (And a cost curve as buying a 50 pound tub of wheat is much cheaper!)  I know, I'm whining again.

As I have learned over the last several years, there are times when you just need to mourn - and then move on.  This is something to mourn.  The loss of a piece of normal for our sweet little girl.  I know it could be worse and I'm thankful for something that is managable.  I know God will use this to teach me.  I pray that He will use this to help mold and change all of us so that we are more like Him. 

I'm not sure where we will go from here, but we're leaning toward waiting.  I can use that time to learn and prepare.  We would love your prayers, advice and insight.  Hugs are great too!  Thank you friends for holding up our precious little girl.

With love