Our First Answer

Why do we want babies?

For me always knew I wanted to have kids,it was never really a question in my mind. That being said I am not one of those women who knew that I wanted to be a mom of the year. I didn't get warm fuzzies about motherhood that so many of my friends did. I thought it was what I was supposed to do, and I knew I wanted to experience it, but I can't say I was ever really thrilled about the idea. The longing was never there.  Some women are born knowing that they will be spectacular mothers. I was not one of those people.  I also think some women are born knowing they don't want to be mothers. And I think that's okay too.  I was somewhere, confused and floating in between....praying that one day I would be enlightened.  

I remember when I first told one of my dear friends I was pregnant. We were out to lunch having our usual salad and baked potatoes, when I shared with her I was going to have a baby. She of course was very excited for Parker and I, and asked all the usual weird questions that close friends do who have never had children.  During our conversation, she explained to me that she wasn't sure she wanted to have kids.  It wasn't clear she wanted to bring them up in the same world that she lived in. There were so many scary things going, she wasn't positive she wanted to deal with having to protect something so innocent.  It might be too much for her to handle. I listened intently surprised,  because I had never had those thoughts. Her opinions made perfect sense. Why hadn't I thought of motherhood that way?  Was this whole thing going to be miserable for me? Would I always be consumed with worry and fear?  Would I really be able to protect a pure, honest lamb from all of the wolves in the world?

As it would turn out, I cannot. 

Our First Answer

We received word from Toby's GI doctor that his blood work showed some answers this time. This was blood taken a few weeks back, before the 5 hour poke fest in hem/onc.  It showed there was definitive proof that there was something systemically wrong.  According to our nurse, Toby had a genetic panel tested which showed he was 10 times more likely to have this disease than a normal person.  This information leading them to another test for a specific antibody, which determined conclusively - it wasn't our fault, or his picky eating - Toby has Celiac Disease. He had been tested twice for this already - both times ending in negative results.  I was definitely surprised by the diagnosis, and I was also filled with a mix of emotions.  Relief, Worry, Happiness and Sadness, all at once.  What a weird rush of emotions to experience.  I had been begging for answers for over a year, praying it was a diagnosis that wasn't life threatening - So why was I still so worried?  How was there still panic inside?  It was made very clear - this could not be all.  There could still be more.  This could be the first of many results for Toby, we are still waiting on many labs to come back. At least we have a start.  A new beginning.  What a precious gift God has given us - our first answer.  

I was immediately emailed a packet of information.  It described what this diagnosis was in detail, and contained resources for us. Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have Celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley.  In a nutshell, if a person with Celiac disease ingests gluten, it sets their insides on fire.  When they are inflamed, they cannot absorb nutrients, no matter how much they eat.  There is no cure for this disease, and no medication.  The only way to manage the complications is a strict, life long, gluten free diet. 

No more regular noodles for me

   

Our call ended, and I had a feeling of anxiousness.  Anxious to rid my house of all of the toxins hurting my baby.  Anxious to learn more.  Anxious to start moving in the right direction.  Even though the rest of the family does not have this intolerance, this disease needs to be treated like a peanut allergy, and EVERYONE will be gluten free.  Even airborne particles are bad for Toby, meaning trips inside a bakery are frowned upon.   I have to get rid of my toaster - as it has been exposed to glutenous bread before and can contaminate any non-gluten fare that's put inside of it.  ANY open peanut butter, butter, mayo - trashed, there are crumbs in it, or a knife that has touched something with gluten. Our pantry, emptied.  Our fridge and freezer, emptied.  Why?  Because gluten is in almost everything.  Unless it is natural, unprocessed meat, cheese, fruit or vegetable - chances are, it is made with gluten.  It's more than just things made with wheat, barley and oats - something I thought pretty manageable when I first learned about it.  Its a filler, a thickener and a binder.  It's in flour, coloring, flavoring, seasoning.  If my husband and I touch it, we have to wash our hands.  If we eat it, we have to brush our teeth.  The smallest amount of gluten that is ingested (or, Toby touches, then puts his hands in his mouth), can set his insides in a roar again. He'll become inflamed, and during the periods of inflammation, he will not absorb nutrients.  He wont grow. Period. 

Cleaning out the pantry

If I kept deferring cleaner eating because it was too hard to do,  I had no choice now.  No more fudge rounds. No more hot pockets. This is fine by me.  I will eat dirt every day for the rest of my life, if it means that Toby is healthy. 

I was assured that many people have this disease and they have completely manageable, delicious diets.   There are a handful of restaurants, including Maggiano's and Mellow Mushroom that have isolated preparation areas for their gluten free food.  There were many tasty gluten free alternatives being sold at grocery stores, even more at health food and specialty ones.  

So where does one go to get gluten free fare?  We started at Jungle Jim's - who claim to have the largest selection of gluten free foods in the Midwest. 

I should have been ecstatic to have this bounty at our hands, but when I saw that it comprised of 4 half isles, I started to get overwhelmed.  This is it?  This is the largest selection in the Midwest?  I filled my cart up with sauces, seasonings, cookies and snacks.  I hit the freezer section, and saw individual pizzas for $12, a pack of 4 hamburger buns for $5, a half loaf of bread $7.  Sticker shock.  I knew it would be pricey, but this?  No longer are the days of 99 cent 1 lb bags of pretzel sticks, I now was purchasing the 8 oz bag for $5.  I started to panic.  Parker had gone to use the restroom and I stood at the freezer door, my eyes stinging and glassy, wondering how I was going to do this?  How will I get my 2 year old to eat fruit, vegetables and meat, when he refuses to eat them now?  Panic.  What will vacations be like for us?  We can never eat out....Even if they have a gluten free menu (as its a pretty big fad now), they most likely have contaminated surfaces, ovens or utensils (as most of these menus were created for the diet, not the allergy).  We can't stop at the fast food restaurant on the drive down....French fries are ok, but not if they are cooked in fryers that also cook breaded items.  When he does eat meat, he can't order a burger or chicken sandwich and pull the bun off - even the meat having touched the bun can cause problems. What about school lunch - I can't pack a peanut butter and jelly sandwich.  Additionally, most lunch meats have fillers, seasoning and preservatives that are on the bad list.  What about snack time after sports?  What about Halloween?! and Easter?! What about when he's a young man and wants to drink beer! 

ALL of these fears and doubts, all at once - circling in my brain, destroying what little amount of positivity came with this diagnosis. Overwhelming my thoughts with negativity. My husband, returning and seeing the worry in my eyes, rubbing my shoulders and telling me everything was going to be just fine.  How we have waited so long for answers, and we have one.  Stay positive.  

Staying Positive 

Here are the positives:

• Because Toby is so young, he hasn't gotten to experience (or if he has he wont remember) delicious glutenous items - Pizza, Burgers, Fast food, cake, cookies, candy.  Lyla will only know Gluten free.  
• There are lots of things that are safe for Toby to eat that he eats now!
• Cheetos
• Chex
• Corn Chips
• Breyer Ice Cream
• Natural French Fries made at home

Now if I can just get him to eat them......

• Even though most everything has gluten, they do make gluten free alternatives to many things, and even though they are expensive, they are available to us.
• Pasta
• Bread
• Pretzels/Chips/Crackers
• Cookies
• Cakes/Cupcakes - We found two gluten free bakeries in the area! (I think they'll be getting a call soon for a birthday cake!)
• Gluten free is such a healthy lifestyle, and will benefit the entire family by following.  
• I love to cook - and this gives me a whole new realm to explore.  
• This is not life threatening.  It can cause a lot of complications, but all of them are manageable.   
• Barring any other diagnosis - Toby can grow again.  Once his insides heal (after he's been gluten free for a few weeks), he will start to absorb nutrients and hopefully will grow. Hopefully he'll feel hunger instead of pain.  Hopefully he'll want to eat.  

What's next?

Over the next month we transition to a gluten free lifestyle.  Meeting with nutritionists and learning.  Learning new recipes and making meal plans. Cleaning out our house and minds of toxins, trying to heal the wounds of worry.  Hoping these changes allow our boy to grow, while waiting to hear back if there are other anomalies adding to his distress.  Praying this is it, and thanking God for the help he has provided so far.  

His first brown bag lunch for the babysitter.  Gluten free organic cereal, pretzels and cookies. Cheese and apples.  He might eat a few bites of this, but for some reason I pack like he's a football player?!

Why I want babies 

I can only answer this now. I want babies because I want to experience something more than just myself.  I want to fall in love everyday, more and more, in such a unique and profound way - such a different, more fulfilling love than with a spouse.  It's hard for me to knock any part about the love I feel for my husband - this is all consuming.  But our love is like a partnership.  I existed, lived and loved myself far before I met Parker.  He is the underline to the word.  He is the support.  He is my partner, our two hearts side by side.  My babies...My babies fill my heart. They make it beat.  They make me want to be better.  They allow me to let go of every want and desire if only it is for their good.  I didn't realize I wanted them until I had them.  I couldn't have possibly understood that there were missing parts of me, until they were created.  If my heart were made of bricks and stones, it would have been tall and strong long before they were in existence.  But my children are my mortar, they have bound it, and have made it unshakable. Everything can be withstood because they are here, creating a watertight seal.  

If you are unlike me - If you do not want children, or cannot have children, I have no doubt your mortar will be made from other parts of your world that make you strong and advantageous. Your love of family and friends, your passion for your career, your devotion to your faith, the joy of a hobby or craft.  We are all unique, that's what makes life beautiful. 

God has provided me answers, time and again, when I thought the questions were unanswerable.  God has provided me two tiny beings, with the biggest impact on my life.  I will forever be indebted to him, and to my children, and to my husband, for changing my opinion about myself.  For reminding me that I am stronger than I think, that I am happier than I could have ever imagined, and that I am worthy of the warm fuzzies of motherhood I had never thought I would be.

  
Thank you for Listening, 
Lindsey