If half of the surfaces in your home aren't sticky, then you've got to be doing it wrong.

There are days when I want to punch my husband in the throat.  Those days when he gets home from work, immediately lays down on the couch for "just a minute" and falls asleep in .7 seconds amidst a screamining baby and a toddler yelling Mom, Mom, Mommy, Mom, Mom Mooooooooom.   I've had a lot of those days recently.  Too many.  Its not just your hardworking husband, it the sweet old lady bagging your groceries.  Moving at sloth speed. Doesn't she realize your kid has poop in her diaper and you thought it would be easier to just leave the diaper bag in the car?  For that matter, doesn't she smell it!!?   Or what about at the same grocery you see a girl you used to work with, who also has two small children, but she - she looks immaculate.  Her makeup is perfect, only outshawdowed by how perfect her hair is.  Gah - I want to punch you because I'm so jealous!  (If your reading this and know I'm talking about you I really love you in all your perfectness!!!) 

I'm a work from home mother.  I have a full time career which requires my attention 40 hours of the week.  Granted, I have some flexibility in which 40 hours I choose, but I need to give that much of my time, in order to provide for my family.  My lovely, adorable, screaming, crazy, loud children are with me two of those days.  The other three, they spend their time with the babysitter.  Praise Jesus for babysitters.  And if you are a babysitter (or a teacher for that matter), you should be granted sainthood.  You should have a special place in the next life where everyone else waits on you hand and foot, and designated little children take turns running around after you wiping every surface so its clean and shiny, and free of germs.  

During the days in which I am required to work my office job and parent my children, I am both happy and astounded when they come to an end and my children fall asleep in one piece.  Its at the end of these days that I feel like I have had the entire staff (with animals) of Ringling Brothers at my house, practicing their routines for the show.  How can my children, with a combined weight of under 40 lbs, 1 of them immobile, render me completely useless?  Wanting nothing more than to get under the covers, curl into a ball, and turn off my brain.  I can't explain it. But it's like that, every time.  And then, I sail right into the three day stretch where I receive help, and all is right again.  Granted, on weeks where my husband is out of town and I am required to pack up the diaper bag, get both kids ready, transport them to and from the sitter, work, unpack the diaper bag, feed the kids dinner, bathe the kids, read them a book, put them to bed - you have to understand - I'm sure I look homeless.  These days, I typically have a normal lunch, but my dinner generally consists of a handful of m&ms and 4 pretzel sticks from the couch cushion, which I found trying to frantically find my son's binky he's been crying for.   Who has time for dinner, or showering, when you'd rather sleep?  Sorry if you see me (or smell me) during one of these days.  It is what it is, and I certainly hope that other mothers go through the same experiences, because if not, I am clearly doing something wrong.  If half of the surfaces in your home aren't sticky, then you've got to be doing it wrong.  If your son's favorite game isn't hitting his sister in the head with his hot wheels, you must be doing it wrong.... Right??

"Fun"

As you can tell, I was in the mood for a break.  At the last minute, I scheduled a grandma for an overnight, booked massages and a hotel room for my husband and I, and started packing up an overnight bag for my hellions  angels.  Parker and I were due for a bit of fun, eh?  We had visions of relaxation, followed by (heavy) drinking, a nice dinner, the casino and...wait for it.... a full night's sleep with no wake up call in the form of crying infant.  (Mental Note - invent alarm clock sound of screaming baby and no one would ever hit the snooze button again.)   Our massages went just as expected, and we headed to our room to get snazzy for our dinner then casino.  We made it just in time for the casino shuttle and that's when the real fun began.  *closes eyes slowly and deliberately*.  We boarded, what can only be considered, a stripper shuttle.  Neon lights, poles, bar, curved leather seats.  Perched atop these seats, at least 15 21 year olds, drunk as skunks, screaming over one another. 

I thought I was escaping from children!!   Dont' get me wrong, 21 year old Lindsey would be drunk right along with them, but 30 year old Lindsey spent the beginning of her night trying to curl her hair (and failing) and squishing herself into her Spanx while gulping down 1 glass of wine running out the door.  Appppparently, the good Lord saw it fitting to shove us, literally, into the middle of a 21st birthday party.  Was there really a time when this was enjoyable?? - Parker and my eyes meeting, and thinking the same thing. We wove along the street, during our 2 minute shuttle to the casino, and as we approached, it happened.  Vomit.  One of the little bastards (excuse my french) thought the middle of a packed shuttle bus was a great place to empty his stomach.  Awesome start to our "fun" night.  Somehow, the sight and smell of vomit as a result of too much drinking kinda curbs your desire to get drunk on your only night out for the week.  

We made it to the casino buffet nearing 10pm.  I had a buy one get one free coupon, I mean, how could we NOT go, right?  We ate until we couldn't eat anymore.  I'm pretty sure I had an entire plate full of dessert.  In fact, I know I did, because my Graeter's had to be put in a side cup as I had no room on my plate.  Massages, Check.  Nice Meal, Check.  Now, it was time for drinking so much that even my half curled hair looks amazing- right?  Wrong. Thinking my spanx were about to bust a seam, we sat down at the blackjack table, lost our money in a short while, and left on the vomit bus as sober as when we left our kids.  

My, what a difference 9 years makes.  We were in bed, sleeping, by midnight.  Instead of getting drunk - we were able to wake up early, shop all day at thrift stores and antique malls, and get back home to grill out and see our babies' smiling faces.  This, this is what fun is. Thank you God for slapping me back into reality and what truly makes me happy, even if I don't recognize it that often. 

This is what matters. 

This week

This week, I started to take out summer clothes for my children.  Lyla's closet filled with new frilly dresses, neon tank tops, and strappy sandals - the same size as her brother's.  For Toby, I just needed to unpack his summer clothes and shoes from last year.  They can be reused, one convenience about a child that doesn't grow :) We have 7 more days to wait until we meet back with our specialists for more information.  As that date grows nearer, I grow more anxious to hear the results.  I pray that there is nothing more than what he is already diagnosed with, but I also know we still have more specialists to meet.  More openings for slivers of doubt to be raised.   Please continue to keep Toby in your thoughts as we pass the next few weeks of appointments, and undoubtedly further testing - bringing along with it more sticks and more worries.  Please pray for his comfort and bravery, and for my optimism to remain steadfast. And lastly, please pray that we win the lottery and I can hire someone whose only job is to walk around behind me and my children wiping every surface so its clean and free of germs.  Amen. 

Thank you for Listening
Lindsey 

Parenting 101

If you've passed parenting 101 (I'm still waiting on my grade....), you know that we teach our children with hard work and dedication, they can be anything they want to be.  The sky is the limit.  But what happens when you don't believe the words coming out of your mouth?  What if you don't think your child can be whatever they want to be?  Is it fair for you to suggest that they can? Is it wrong?

This post might not make me the most popular woman on the internet, its definitely not going to make me mom of the year.  And I hope that one day when Toby is 6'2, 200 lbs of muscle, we can both read this, me sitting on his lap, and laugh at my sweet niaivity.   But c'mon, I can't possibly be the only mother in the world who has doubts?  Maybe I'm the only one who says them, but I know I'm not the only one who thinks them.....right???

In these photos from this week, I can't help but think Toby looks like a little doll. 

With all of Toby's diagnoses still unknown, my mind ventures to the future, thinking about all the possibilities for my boy.  He can be a doctor, a lawyer, a teacher.  He can be a boilermaker, like his father, and fit perfectly inside big power plant furnaces without a hitch.  But, I fear my son will never be a basketball player, even though it's one of his favorite activities now - Daddy lifting him up to dunk in the toddler net.  

Like in all of my reflections, there's this devil on my shoulder asking - what if he continues to not grow?  I hesitate because he loves firetrucks and hoses.  When he's an adult, what if a fire hose weighs more than he does?  What kind of mom would I be if I encouraged my son to be something I fear he won't ever be able to do?  Are there world famous chef's that aren't allowed to taste their own recipes or the food served in their restaurants?? (Maybe he'll start his own GF chain?!?). Stepping outside of my own circumstances... What if your child aspires to be an opera singer, and can't for the life of them stay in tune.  Do you keep up the positivity knowing they weren't born with a singing gene?  What if they fail math every year, but dream of being a chemist when they grow up - Is it in our job description to push them to work harder at something that just doesn't come naturally, or do we instead find all of the characteristics they excel in, and promote a lifestyle suited to their strengths.  

When is the line drawn between advocating and pushing for dreams to come true, and setting your child up for a crushing blow?

I know what your thinking, and trust me, I'm thinking it too.  He's 2.  He's not thinking farther past the 8:30 pm episode of Bubble Guppies much less his career path in life.  So why do I fret about this already?  Why can't my mind be as innocent as his, mesmerized by bubbles and balloons and bath time.  It's only natural for parents to be protective, and with that nurturing and loving.  I wonder if I'm doing my tiny boy an injustice or a favor by leading him to believe that in reality, there are just some careers and hobbies requiring certain physical capabilities that someone who has a growth problem might not be very successful at.   I'd like to believe the latter, but like all of my thoughts these days, it's inter-weaved with doubt. 

Updates

This week we celebrated a milestone.  Toby turned 2!! 

We had a little family celebration the night of his actual birthday with this store bought GF cake from whole foods.  It tasted like cardboard and shortening with sprinkles on top.  So I thought for his big party that weekend, I would attempt my own cookie/ice cream cake.  It turned out muuuuuuch better, and I think even the glutenous members of the family thoroughly enjoyed it. 

Some happiness from this week, in 77 degree weather on a sunny Sunday:

Learning to blow bubbles

Opening his lovely presents

Lovins from Issy....

Very First Easter Egg Hunt!!

Unfortunately with all the happiness, we also had another doctor appointment thrown in between our celebrations. We didn't gain any weight, again.  To put things in perspective, this visit marks 10 months in a row with no growth - almost an entire year - almost half of his entire life. This doctor appointment, unlike any before, ended with a high-five from Toby. We had no shots and no sticks!  What a great birthday present indeed!

I had spent part of this week looking up Toby's recent test results that had come into our My Chart Inbasket - an online service we use to view our medical record at Children's.  Why I thought it would be a good idea to look at them, I have no idea.  I think I was hoping that everything would be normal and I could sleep easy, but they weren't.  And I should have known better. 

I stopped taking notes when I got to my 5th abnormal result.  This one, showing signs that Toby could have sarcoma, Hodgkin s Disease, Leukemia, and other unspecified inflammatory conditions according to internet research.  What the hell was I thinking?!?  You would think I would have learned my lesson by now, but my desire for Toby to be "normal" is so strong, it turns my rational thoughts to mush.   At our office visit, I tried my best to explain my findings to his pediatrician.  He was not the one that ordered the tests, and assured me that he would get the findings from the immunologist as soon as he had time to review the results, following with - "I could have told you they would be abnormal!" Duh. These findings could all be related to his most recent diagnosis of Celiac Disease, so why would my untrained eye be granted privilege to view such destructive info.  One can only wonder.  We are still waiting for our visits on April 30th - we have three of them scheduled.  First stop is GI, then nutrition, followed by Hem/Onc.  Prayers for our little man, for his comfort and good results.  After those appointments, we meet with a Geneticist the first week of May.  I can't say we aren't doing everything possible to find out what's wrong. 

Until Then...

Until Toby is old enough to understand - he will feel like he can conquer the world as he conquers the stairs.  Until that day when I have to sit my son down and proclaim example after example of every quality and feat he excels at, he will think he can do no wrong. But, there will be a day, shadowed in a gray cast of worry and sadness, that I will inevitably console him because he is not big enough to do something.  Anything.  I know it.  And until then, I will be praying that I will be enlightened as to the words I will use to explain what a blessing this all is. That since he was a baby boy, he's been the one of strongest men I know. That if all the other boys had half the amount of courage and perseverance as he does, the world would be full of brave warriors and no sadness or bullying.  After all, he may be small, but he's still the man :). 

  
Thank you for listening, 
Lindsey 

Serendipity

Wowzers

What a relief it is to have such caring friends and family.  But stop it.  Stop it already.  Quit it with the worry and the tears.  When you talk to me about my son, don't let the water well up in your eyes.  I can see when your face turns red, and then I worry for you.  I don't want to.  I mean that in the most loving, sincere, genuine way.  I love you for your worry. But I can't handle it.  So stop.  

I consider myself to be a strong woman. I don't like people to see me cry. I don't like seeming weak. This probably stems from a bad relationship had in my late teens.  Due to his issues with addiction, it met its demise by the time I was 21, all for the best.  I learned a lot about myself, and more about my family and my friends. I made some horrible decisions that I regret to this day.  Ones caused me to cut ties with friendships I thought I would've had for the rest of my life. I learned that the first time you cry in pain, they'll never forget that.  Your loved ones will never be able to erase how bad you hurt.  

It is because of this knowledge, that now, in my later years I try to mask any suffering and pain.  I know now it's different. I know that our struggle now is not a result of my poor choices. But I don't want people I love to worry. I don't want them to be in pain.  I've been complimented about my optimism in the face of our challenges.  I'm like that only because I've been in a place in my life where I have been the exact opposite, and it got me nowhere.  It will get you nowhere to worry, so please, please, continue to lift me up with your happy thoughts, your powerful prayers, and your advice.  It is impossible for me to tell you how compelling these are, as there are no words to describe it.  

Serendipity - an aptitude for making desirable discoveries by accident.

I left the DMV today after taking my Indiana driving test.  Who knew you had to retake the test when you moved states?!  I even had to study.  Good Grief.  I passed though - woot woot! I guess its officially official that I'm a Hoosier.  As I left, I wondered what I was going to make Toby for lunch.  After only a week of getting Toby's Celiac Diagnosis, I'm still a bit overwhelmed at the concept of making buckwheat pancakes, and rice flour bread.  So, instead, I've been trying to replace his usual favorite fare (French Fries, Mac and Cheese, Pretzels and Cookies) with store bought gluten free options - until my brain can wrap itself around the idea that I have to home make my own bread now.  (I know they sell store bought gluten free bread, but I can't stomach the price - this just drives me to learn something new - bread making!) 

Our first homemade GF mac and cheese was a success!!

I recalled, from doing my research, that Penn Station only uses their deep fryer for their natural cut french fries, and thought about how much Toby would enjoy a fresh batch (or a fresh single french fry, his usual limit). Pulling out the of DMV parking lot, I asked my good friend Siri to lead the way to the closest shop.  You'll never guess what happened next.  Just three miles from my starting point, I made the left hand turn into the mini mall plaza, and saw the sign with the red letters I had been searching for.  But right next store, something better stood out. 

This.

Serendipity's Specialty Foods.  I was told there were a few shops in my area that sold gluten free ingredients, but I hadn't had time to research them yet.  I didn't even know the names of the stores.  Until Now.  I had been lead to a treasure trove of gluten free fixins! Can you even believe it!

All of those orange labels, that's all stuff I can use!  You might as well start calling me Betty Crocker :)

If you recall, I had attempted some gluten free shopping when I first heard our diagnosis.  I went to Jungle Jims.  If you aren't from our area - Jungle Jims is a zoo.  Almost literally. 

I get why foodies like this place.  I totally see how the bouty of international fare can be exhilerating for those that like to cook. For me, I hated it.  It was too big, too loud and there were WAY too many people.  Everyone just get out of my way, and let me shop in my asile, as slow as I want, picking and reading whatever I want.  Get off my back. 

Can you tell I wasn't really fond of our experience?  So this.  This place.  Serendipity's.  What a welcome site for sore eyes.  I was greeted as soon as I walked in with a warm smile and a pleasant hello.  She asked if she could help, and I explained to her our recent diagnosis, and that I was just starting my adventures in the GF world.  She seemed excited to help, and lead me down an aisle filled with GF mixes, ingredients, candies and snacks.  This.  This was a lot more my pace.  I can handle this.  She even handed me printed out, GF recipes they kept stored in plastic containers at the front of the store.  I can definitely do this.  

I walked out without any physical fare (I was on track for those french fries remember!).  Instead, I left with a new appreciation for, and longing for learning.  I wanted to get home and research recipes and meal plans.  The thought of shopping for my ingredients doesn't seem so overwhelming now.  What a precious gift God has lead me to, peace of mind, yet again. 

Your help 

Your help has been insurmountable.  Your outreach has been inspiring in more ways then you know.  I know I haven't been able to write back everyone yet, or acknowledge offers of help, but I'll get there!!  Mostly its because I can't think of the right words to type, I'm just not sure how I can adequately portray the thoughts in my head.  All of the positive reflections happening. Just know that I hear them, and I'm so very grateful you took the time to write them. 

I'd like to share with you some of the outreach that has been sent my way. 

"My 16 year old daughter was diagnosed with Type I Diabetes when she was 2. When she was diagnosed, the standard treatment was a mixture of insulin shots and a diet of 3 meals and 3 snacks every day at the same exact time (timed to the rise/fall of the insulin). She was fragile to me when we came home from the hospital after her diagnosis. I was obnoxious, I asked every restaurant for the nutritional content of every menu item, freely lectured them that it is required by law if they did not have it available. I was insane. But soon, counting carbs, timing snacks, poking her with a needle and pricking her finger became normal. And second nature. I still pray every day that they find a cure. I worry EVERY DAY about her health and her future. But I know there is always hope. She is tough and smart and mature because of her plight. And it's made her family stronger too. I know you will experience the same & Toby will grow up to be a strong, smart, empathetic person because of his journey. Hang in there and know that there are so many others that can relate to everything you're feeling right now." 

"It is hard sometimes as medical person to see the concerns, worries, and thoughts the family goes through. You are giving all of those worried about their own children a sigh of relief that they are not the only ones."

"Hello Stranger!  I promise you are doing thing right!!!!  They will uncover What's going on with Toby.   I feel I neglect [my daughter] a lot due to [my son's] problems so I make a point to take her on dates.  Just her and I we do what ever she wants!  She eats it up!  If you ever need anything let me know, I understand the stress you are under!"

"I just wanted to tell you that my heart goes out to you.  I read your blog. And it breaks my heart.  My heart goes out to you, doing all you do, as well as taking care of another child. I'll be sending good vibes your way.  And if there is anything we can do, please let me know."

"Just read your blog entry and wanted to let you know I'm thinking of you guys. Your words are so touching and brought tears to my eyes. Can't even begin to imagine. Stay strong. You are an amazing mommy that clearly loves her babies more than anything. Take care."

"I read your experience about the blood sugar stuff. It hurt my heart and I can't imagine how scary that was...again it made me think of [my son] and all the frustrations and difficulties we had when he had his first surgery at 9mo old and we had to stay in the hospital for almost a week to get his blood sugar stabilized. Just wanted to say hi and "introduce" myself and let you know I'm here if you ever need to chat with someone who gets it or if I can help you in this process at all. It's hard and scary and confusing and exhausting and having an extra set of ears to listen and run stuff by was really helpful for me so just wanted to offer that up! Hope all is well!"

"First off I want to start by telling you that your blog is AMAZING!!  You have truly inspired me in so many ways.  Your honest outlook is so refreshing!  I wish I had good information for you that would help lead you to the answers you need, but my daughter's story is different from Toby's story. I feel for you and the pain you feel for your little one.  We also visit the doctor very frequently.  I think and pray for you often as I know that the fear of the unknown is the worst part.  I always felt like if I have the answers I can deal, but just give me the answers!  I hope that you get the answers you so desperately want.  From reading your blog you seem to be such a wonderful mother.  Your strength is incredible as I can't imagine how hard your days must be.  Like I said I know our stories are not the same, but I empathize with how you feel. 

I will continue to pray for Toby and your family.   I look forward to your blog posts as they provide me much strength on the hard days.  Toby sounds like such a wonderful and brave little guy.  It sounds like you got a special blessing from God as well.

PS - I had a nurse at the hospital give me this poem about kids with 'special needs.' At first I was taken back as I didn't feel my child had 'special needs', but then I realized that special needs can mean so many things.  Many of which may go away and many that stay with a child forever, but regardless it helped me to appreciate everything about her and my son too.  I still get this out from day to day to help me through. "

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Ok guys.  Can you even believe it.  This is just a sample of the many notes and comments that have been sent my way.  All of them empowering me more and more to stay positive.  Celiac Disease is a good thing!!  We can handle this!!  I  keep praying that this is all it is, and we have a while until we are sure, but with your help, my worry is being overshadowed by my joy.  The pure joy of loving life any way you are dealt it.

Thank you all, so very much.  And thank you for listening. 

Lindsey 

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