Trending: with Celiac, gluten, and a toddler

It has been two and a half years since I wrote a blog entry. It feels like both a very long and short time. Today is May 1. The date is significant because it marks the beginning of Celiac Awareness Month.  You will not see the word “Celiac” previously in this blog because it was not even a blip on my radar before two weeks ago.

Besides watching Elizabeth Hasseleback, controversial and former co-host of The View, confidently refuse certain baked goods on air, I never knew of anyone who had this condition. What I know is that gluten has become a buzz word during the last year. I have a few friends and family members who have chosen to go gluten-free for “health reasons” or as a new dieting regime.  Admittedly, I didn't take this seemingly odd preference all that seriously except to revel in how annoying it was to eat with them. Sorry guys.

It was two weeks ago when my youngest son, who just turned three, was diagnosed with Celiac Disease. He has been sick for a while.  My family and I did not know what was causing his incessant diarrhea and related symptoms. I was at my wits-end trying to find out what going on. Why did he have a bowel movement after eating and drinking anything – sometimes up to 10 times a day? Why was he always getting stomach bugs? What was going on with my sweet little boy?

After surmising that food allergies may be to blame, I took him to an allergist. Tests did confirm a couple of allergies, including one to apples. The allergist also tested him for milk and wheat allergies, which came back normal. I took him off apples and apple products (which are in everything by the way) but to my chagrin, there was no improvement.

Still not knowing what to do but knowing that I needed to do something, I decided to eliminate ­­dairy because some internet “experts” opined that dairy is linked to ear infections. My son has had many ear infections, requiring tubes along with the gastrointestinal issues. I figured ... maybe.  Again, not much seemed to change.

Our once voracious eater was no longer interested in eating anything. He would play at the dinner table with his beloved Thomas the Train engines rather than eat. It was his older, skinny brother whose dining habits worried us, not Mr. Boy. Mr. Boy was a tank.  His dad referred to him as Bam Bam. But Bam Bam was starting to lose weight.  He was often tired and his constant movements resulted in brutal diaper rashes that would cause him to scream out in pain while being changed.

Nothing helped. We were at a loss. Me. His dad. His Nana. His daycare provider.

When he turned three earlier this month, I took him for his annual exam and brought up the issue once again. Our pediatrician said that he had Toddler’s Diarrhea, which may have been causing the issues. She asked about his diet and I began to list his favorite foods: waffles, pancakes, peanut butter and jelly sandwiches, and it dawned on me – gluten. Damn-it. Gluten, that trendy little bugger. It was one of those come to whomever moments. How could I have not thought of this earlier!?  I should have known.

Immediately, I stopped the medical student who was training with our pediatrician and excitedly shared my revelation. I asked her to tell the doctor the connection I made. The doctor came back into the exam room and said that she had the very same suspicion, but thought it was unlikely. She would run some tests.  A few days later, the blood tests were in … Celiac Disease.

While in a daze, I wrote down what the doctor was telling me on the phone - "Celiac", "gluten", "small intestine", "endoscopy" ... "Children's Hospital" - while The Boy ate something that may or may not have had gluten in it in the kitchen with the rest of the family.

She explained that she was going to schedule an appointment with the Chief of Celiac at Children’s Hospital and less than a week later (this past Tuesday), we had our appointment.The specialist confirmed that Celiac is to blame for many of my son’s health issues and in order to confirm the diagnosis, he would need to do a biopsy.

This surgery will happen in the next week or two and then we will forge full-speed ahead into a gluten-free lifestyle – for The Boy and likely for the rest of the family as well.

We have already started him on a GF diet, although we were advised to keep some gluten in his diet, so that the endoscopy can do what it needs to do and confirm the disease. It is so counter-intuitive to knowingly give a child, your baby; your baby who has been suffering for so long, something that we know is hurting him. But … doctor’s orders.

As soon as I learned of my son's Celiac, I did what people do in 2014, I started researching the topic online. I came across a tweet from the National Association for Celiac Awareness and that in acknowledgement of Celiac Awareness Month, they were looking for folks who want to blog about their experience, so here I am, two and a half years later.  Ready to embark on yet another journey.

I'm in denial. Maternity is quickly approaching and I want to ...

Denial. This is a good one. Takes its job very seriously - disallowing your mind from going to that place where it really wants to go, the same place that causes unending anxiety. Denial will erase - or redirect - your thoughts to something else: the capture of Whitey Bulger, the Casey Anthony trial, or the fact that Ann Taylor Loft is offering 40% off of everything via your new favorite coupon Web site. After the birth of my second son, I am embarking upon my final two weeks of maternity leave. I am sick-to-my-stomach as I think about this transition from stay-at-home mom of a newborn baby to a working mom of a newborn mom and a toddler making denial my closest confidant right now.

Like so many mothers who have to go back to work full-time after the birth of their children a multitude of emotions permeate our reality: guilt, loss, sadness, regret, resentment, anticipation, and fear. Less than an hour ago I returned home from a wedding shower luncheon for one of my favorite co-workers. Today is a Thursday, so the gathering took place during lunchtime at my place of employment. I dropped my oldest (2.10 months years old) off at my sister's house for a play date and took my youngest (12 weeks old) with me to the party. This was not the first time I have been back at work since I had the baby. Once before I took both kids to the office to see everyone. I am fortunate to have amazing, supportive, caring, funny, and really cool co-workers, and, so, I genuinely want(ed) to see everyone and hear how they were doing and, of course, to celebrate the upcoming wedding of my lovely colleague.

But.

The whole time I was there - and still over an hour later - I have a pit in my stomach that won't go away. I am sick, literally nauseated, at the thought of going back to work, of leaving my baby, my babies. Run away is what I want to do. Hop on a plane with my husband and the two kids and leave the northeast for somewhere cheaper and more hopeful - a state, a community where I can have the option of working part-time or not at all just for a year or two. Reality sets in. I can't leave. No where to go - right now. Two weeks. This is what I have and this time must be savored, like an expensive, gourmet meal that I can't afford or pronounce, or, even see for that matter because it so small sitting on my large, white dinner plate. Instead it will be voraciously devoured like a hungry, postpartum mother who has not eaten since breakfast who only realizes this at dinner time.

Denial will keep me company in the meantime. During meal time, nap time, fun time, all day, all night, every day, every night until the day I get up, take a shower, and start my new, old life as a working mom.

Not sure about this "blog" thing.

More than six months have passed since my last blog entry. During these months, I certainly thought about writing a post, but I intentionally put it off because I was in the middle of a heated inner dialogue: to continue blogging for Hope-Full or creating a new and anonymous blog.

The summer and fall have passed and this morning Puxatony Phil came out of his cave - or wherever he lives - and said that spring was only six weeks away, so I decided to make a decision. I will begin to write Hope-Full again. I will probably start a new blog as well and keep it private. The issue is not that I want to write about deep seated secrets and neurosis (I already have) but that inevitably I will take into perspective the audience: friends, family, co-workers, acquaintances, and total strangers, letting the knowledge of this visibility influence what I write or how deeply I write.

After all this build up, what do I want to write about? What do I have to say? Should I just provide a quick re-cap of where I am not? Nah, this is not a Dear Diary thing. I will offer that I was not in fact pregnant when I wrote the Juno post. However, the following month, I was pregnant.

In typical fashion, my husband and I had decided to wait another six months or so before trying and bada-bing-bada-boom (why am I using terms like bada-boom?, I was pregnant - and, oh, what a whirl-wind it has been. From learning that there might be complications, to that it might be twins, to learning, it was a boy! Another boy!~?.

I was pretty dang sure I was having a girl. I even went out and bought a few little girl outfits at a yard sale in anticipation. Deep down, I knew it was a boy. Also, because the issues in the first trimester, I had several early ultrasounds and one of the technicians, said that, although she could not say for sure, she thought it was a boy. Even so, I still kept hope.

When the sex was confirmed at 18 or 20 weeks, I was prepared. Admittedly, I was disappointed because I know that there is a 99.9% chance that this will be my last child and the way some young women fantasized about getting married (I never did), I fantasized about having a daughter and teaching her to be a strong young woman with self-esteem and a sense of humor. Don't get my wrong, my boys are going to be taught to be proper feminists as well. My husband accepts it and gets it, as much as he can. He wants to balance the gender neutral stuff with totally stereotypically stuff. Balance. This is the key to life. Our boys will engage in boxing for sport and self-defense and read bell hooks and Gloria Steinem for fun!

Wiggly Waffle

Middle-aged men, clad in colorful jumpers and Australian accents are jumping, dancing, and singing through my television set, transfixing my son at 6:00am. Who are these uniformed men and why do they have so much energy and why do they have so much power over my "almost two" years old boy? The Wiggles, of course.

Awaking from a full night's (if we are lucky) sleep, the boy will sometimes call for "Mama" or "Dada", but more likely, he will shout for "Banana", "Blue-berry", or his favorite"Wiggly Waffle." Wiggly Waffles are a perfect blend of his love for food and television.

My son is addicted to TV. Well, I embellish. He is not "addicted" but has a very real devotion to certain programs and characters, like Elmo and The Wiggles. Before having a baby, I thought that I would be one of "those" moms. You know the type. They breastfeed for at least 12 months, make their own organic baby food, and do not introduce TV watching to their kids until the American Pediatric Association's recommended second year of life - and then only with a strict two hour a day limit and content, of course.

My upstairs neighbor, a perfectly lovely woman, with two beautiful children, and does not work outside the home. Her youngest shares the same birth - day & year as my son. In fact my son is two hours older than her son. One afternoon, in an effort to be validated (my husband's least favorite word) by the fact that my less than one year old - at the time - liked watching certain children programs, a lot - I asked if her son does as well. Politely, and with genuine humility - she said something like ... "We try keep him away from the television. When my daughter watches TV, I take him in the other room". I was aghast.

A weakness of mine throughout my lifetime has been comparing myself to others. Friendly, non-athletic competition, has always motivated and inspired me. Spending more time preparing for an exam or completing a report for work early are types of silly things that have made me feel superior in someway. Sometimes such comparison, depresses me rather than comforts me, as it should. Inevitably thoughts like, How do they own a house in this fancy-dancey community? Or, How does she look like *that* after just having a baby? And, bingo, I start to feel badly about myself. Not healthy. Not productive. Yet, irresistible.

It is easy to compare oneself to the standard that which you think is paramount. As easy as it to try to keep up with neightbor or the uber-by-the-book parents, I try to focus on what is important. I love my son more than the day is long and would do anything for his unwaivering happiness and well-being - and, sometimes, that involves indulging a ounce or two of The Wiggly Waffle on a Saturday morning while the rest of the house sleeps.