I read a story today online about a young girl who experienced similar problems to what Mr. O did before we started this gluten free journey. My heart went out to that poor child, her Mom and the rest of her family who lived in their own little gluten “hell”. I can tell you first hand that it’s not a place you ever want to experience. Especially with a child. We did and no matter how trying or difficult our gluten free life can be, we are not going back there. Ever. Period.
Oliver was the most precious baby. He had beautiful, big brown eyes. I remember him looking up at me right after he was born and I was smitten. He was gorgeous. We were so happy to have this healthy, amazing baby after waiting so long. I was instantly in love. But being in love doesn’t change the fact that Mr. O’s life was full of trying moments from the get go. He was a crier. He cried a lot. No, I mean A LOT. I remember sitting up for hours and hours at night with him, rocking in a chair and pacing the floor. He wasn’t happy unless he was moving. Or, unless I was moving. I remember once we were traveling for Christmas and he was about 4 months old. We had a rough time on our trip and I remember dancing around, literally dancing around my in-laws living room with him for hours on end. It was the only way that he would be somewhat content. And, forget about laying him down in a crib or playpen. That lasted no more than 30 minutes at a time. If he ever did fall asleep, I usually snuggled up to him in bed or sat in a reclining chair with him on my chest. It was just easier that way. Then when he was awake in 30 minutes, I would be able to catch him early and hope that I could shush him back to sleep quickly. It never worked. I spent the good part of the first 18 months of Oliver’s life awake. Literally. Awake at all hours, crying or not crying. It didn’t matter what I did or what hubby did, we were beat. I was so exhausted. Burnt out. When I think back on those 18 months I don’t know how I functioned. I actually went back to work after 12 months and I have no idea how I did not pass out on the floor there. I remember rocking in the chair in his room every night and crying. Crying. Crying. Why was it so hard? I loved Mr. O more than I thought ever possible, but if this was just the start and I was already having such a hard time …. I thought I can’t do this. I felt horrible. What kind of Mom says that? There were days that my only goal in mind was to make it until hubby came home so I could go and lay down and rest. Even if it was for just 10 minutes. I lived day to day. I was consumed with trying to get him to sleep and be content and life just passed me by. Looking back on that period of time, I get sad. I see pictures of Oliver and I want to cry. I was so tired and exhausted that I feel like I missed out on enjoying my new baby.
At 18 months, when I first started piecing things together for him, I was so relieved. Taking him off dairy was the first step. I didn’t know if he was lactose intolerant or had a milk allergy, but either way it didn’t matter. It was a glimmer of hope in such a dark time and I reached out and grabbed it. It had to be worth a shot. I couldn’t go on living the way I was and so I thought, we have to do this. In my eyes, and hubby’s eyes, there was no choice. And, it was a step in the right direction. Although it was small, it was the first step in a long journey towards Oliver’s healing. And, even though Oliver’s diarrhea disappeared, he still had terrible behavioural problems. Starting around 18 months, Oliver would lay on the floor and bang his head profusely into the floor. I mean hard, over and over again. I remember him crying and just continuing to bang his head. That’s when I knew there was more to Oliver’s story. But, when I took it to my doctor I was told that he was teething and that was normal behaviour for a teething child. Really? Profusely banging your head over and over on the floor? So hard that you get a goose egg? That’s normal? I knew it wasn’t, but I still didn’t know how to change it. Or why it was happening.
When Miss C arrived just after he turned two, I had high hopes that the second time around things would be different. They weren’t. And, although Miss C was slightly more content than Mr. O, she didn’t sleep. She didn’t cry like him did, but she didn’t sleep. She was awake all the time. Just awake. Wide awake. And, to top it off Mr. O was still awake at night. He dropped his nap (whatever short nap he still had) at 22 months. He was done. I was envious of those other moms whose kids just continued to nap well into 3. What could I do to change things? Nothing. Once again, I was tired. Our troubles with Oliver continued and like I said in an earlier post, when we finally met with the naturopath for the first time, Oliver had been on so many antibiotics for several infections and had even had a bizarre trip to the ER. I was willing to try anything by that point, and I mean anything.
At our first meeting with the naturopath she spoke at length about celiac disease and gluten sensitivity. She told me that taking him off gluten was probably what would need to be done, but that allergy testing would confirm if that was the right path to take. It was. Gluten, dairy, peanuts and citrus were off the charts for Oliver. Seeing that, I knew that drastic changes had to be made. I was ready. I couldn’t go on like this anymore. I was living hour to hour and trying to function in everyday life on the outside world as best I could. This was my second glimmer of hope. I reached out and grabbed it. And, I’ve never looked back.
Did people think I was crazy? Yes. Did I care? Yes, at first. Who even knew what gluten was 4 years ago? I didn’t. Call me stupid, but I didn’t even know what it was. I had a lot of learning to do. This I knew. So did hubby. Changing our life wasn’t easy. In fact, it was hard. Damn hard at times. But, every step we took with Mr. O we saw results. Every one. You see, that’s what is so amazing about this journey. He had so many signs of gluten intolerance, but all of them were ignored. Or not even ignored, just overlooked. Everyone made excuses for his symptoms. The diarrhea, crying, behavioural problems, black rings around his eyes, all of it. But within weeks of taking Mr. O off gluten, I saw dramatic improvements. He was a different child. Completely different. We couldn’t believe the transformation. Not to mention the sleep. Oh the glorious sleep! Taking such a huge step in the right direction encouraged me to seek help with Charlotte as well. Life was different.
Do people still call me crazy? Yes. Sometimes my ears burn and I know that there are still non-believers out there. In fact, we’ve lost relationships with important people because of it. I’ve been told that I talk too much about his gluten intolerance and the possibility of celiac disease. Do I talk about this in every conversation I have throughout a day? No. Do I talk about it? Yes. And if you had been through what we have been through, you’d talk about it too. I want people to understand it. I want to shout from my roof top that my kid has done a complete 180. We have unlocked the door for Mr. O. That’s what I believe. He is so intelligent, loving, kind and he is our beautiful boy. He is so different from that little boy who used to lay on the floor and bang his head profusely. He is so different from that little boy who looked at you, but never really saw you, his eyes glazed over. He is so different from the little boy that used to hit his sister so much so that I was afraid to leave them in a room together. I am so happy. I am so happy he is so different. He is our beautiful boy and I want the world to know it. If I can tell my story and help just one family, just one beautiful little boy or girl. If I can share my story so they, too, can unlock their doors … then I’ll talk about it.