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I normally try to stay upbeat or positive because I personally feel it is better than wallowing in self-pity. However, our journey with my daughter’s Celiac diagnosis has been anything but positive. We came out of it smelling like roses, but our Celiac journey consisted of a lot of yelling, shaming, guilt, blame, and a plethora of other feelings I am not proud of. What I am proud of is that we, as a family, have come through it and are better for it.
The Ugly Truth
I hated potty training, I mean HATED it! I would have paid any amount of money to have someone else take care of that little task. We got through it, so to speak, but it was not pleasant for any of us.
You may be wondering why I bring this up, well, this is where our journey starts. My daughter seemed to always be constipated. She would hold her bowel movements (which I thought was her expressing her control) until the point her body would just go. She would have accidents off and on for years before she was able to heal her self.
She is also strong-willed and needs the proverbial brick upside the head (no, I don’t beat her) to learn any and all lessons. It’s been a blast let me tell you. I thought her “accidents” were because she just wouldn’t go to the bathroom. We tried everything I could think of (bribing, yelling, shaming (unfortunately)) but to no avail. I have always had issues getting through to her. You can imagine the struggles we went through and how awful we both felt.
The hits keep coming
We found out she had Attention Deficit Disorder (ADD) and that opened our eyes to her inability to focus and follow orders. In case you are wondering I am totally linear and literal kind of gal. Logic normally rules me and the fact that I couldn’t get through to my daughter drove me nuts. Well, logic is not a language she speaks and it took me way too long to figure that out.
Things got better for a while, but her bowel issues did not. We tried rounds and rounds of Miralax (yeah, I wasn’t pleased either). Eventually, I complained enough and we were able to get a referral to see a pediatric gastroenterologist (GI). Our daughter was about 8 at the time. I thought “finally we will get some answers”. Yeah, we did, but we also didn’t.
I found out anatomy “might” be causing some issues and her holding her bowel movements all these years had taken its toll on her GI tract. Basically, she had done so much damage that when her brain said: “hey, time to go to the bathroom” she already was going (or was about to). In order to fix that we did another round of Miralax and added Exlax to the mix. She also had to do a complete cleanout and again, it helped for a while.
School seemed to be the issue because she was fighting her body to be on a school schedule instead of what it wanted. We considered homeschooling her, but she is the epitome of a social butterfly and I honestly hated the idea. I am just not equipped with the patience she needed. We struggle for another year or so before I pushed to have blood work done. I just “felt” that there had to be a reason, any reason, why this was going on.
Alas, my mother’s intuition was correct. It was at this time she was diagnosed with Celiac disease. She was about 11 at the time.
My Guilt and Shame
I eventually learned how to communicate better with her. See, she wasn’t the problem, I was – I am the adult and she is the child. I had given up trying to get through to her when she needed me the most and had made her feel bad (for years) because of her accidents instead of fighting the doctors to get answers. The first time she hid one of her accidents from me after we received her Celiac diagnosis she said she hid it because she didn’t want to get yelled at.
Shot to the GUT!!
I deserved it and took it. I apologized and we talked a lot. See, I think it is important to take ownership of the shit we sling. She needed to see that even adults need to be held responsible for their behavior.
She is now 13 and is moody as ever (got to love puberty). However, even though I failed her when she was younger, I have done my best to not fail her now. I made an effort every day to be a better parent to her because she deserves it and more.
It wasn’t her fault, any of it, but it also wasn’t mine either. Once I realized it was just genetics and quit trying to find a blame target we started healing.
The Other Side
Besides the moodiness of puberty, she is a well-adjusted kid with a heart of gold. I still see glimpses of the young girl I shamed, but as more time goes by, I see it less and less (thankfully). Do we still struggle, of course? I have learned to be a better parent, but I also know that I won’t be winning mother of the year either. Each day I choose to do my best every time I talk with my kids and most of the time I do well; however, sometimes I still fail and I own it and try to learn from it.
I chose to share Our Celiac Journey: The Ugly Truth because even though I hope with all of my soul that no one acts the way I did with their child who has special needs, I also realize we are all human and make mistakes. There is no manual that you get before you become a parent so we all just do the best we can. Most of the time we are OK, but when you are thrown a curve ball that you aren’t prepared to deal with and have to wing it.
Society likes to pretend that parenting is all rainbows and unicorns, but it is not. It is hard, messy, and thankless. But it is also wonderful, enlighting, and the best job in the world.
In the end, if you have made mistakes as I did, own them and learn from them. You may still stumble from time to time, but keep moving forward.