Why is it so hard to be real? #ThisIsMe
This past week I was in Arkansas for a conference with my online family Collective Bias. I couldn’t wait! All I could think about was all the things I would learn to help make me a better blogger as well as networking. However, I was surprised by how inspired I was several times with some of the touching keynotes. I couldn’t imagine getting up there and telling a room of 300+ people the truth. I guess you could say that I felt the need to only talk about ways to make gluten free and healthy living easier. If I had been doing this for 5+ years and still have bad days, then why would anyone want to listen to me. I felt like a fraud sometimes putting on the facade. When I started Great Contradictions over 2 years ago, I started to tell my story (and Hunter’s story) about how we became gluten free. I started and I never completed it. Telling the story was just too much. The courage that these women have has inspired me that I need to get it out there. I am just going to start at the beginning…
Five and a half years ago, Hunter (my middle son) at 8 months was not thriving. He had gone from the 99th percentile down to the 1st in two months. He went from sitting up, crawling, and cruising earlier than our first to being unable to sit up. I was a mom of 2 who felt all alone. A husband who I found out wasn’t the person I thought he was who had us relocated to a place where we knew no one. We ended up making less than promised. Who am I kidding we were broke and we had a child with a lot of medical bills being racked up. I felt all alone. I would tell my husband my fears and be honest, but he never listened. I would say the oddest things trying to get him to listen, but from his reaction I knew that he wasn’t there. When Hunter was hospitalized for a week, I sat alone in the hospital for most of that time while my husband worked to pay the hospital bills. My husband’s parent came and got Dylan, but not a single person came to the hospital while I was flailing. I sat alone watching my son not thrive. I was criticized for breastfeeding. I was criticized for not knowing how many jars of baby food he ate, because I had always made them homemade. I was criticized for doing all the things that I thought were best for my kids. My oldest Dylan set me up for failure. He was the perfect child who met all the milestones, who never cried, never was sick, and never did anything wrong. I was shocked at how different the second time around was. Hunter cried all the time, he pooped 15+ times a day, and he never slept. I was exhausted and scared, so What was I doing wrong this time around?
When we finally found out that Hunter had Celiac Disease, I was relieved at first. I thought healthy cooking is my thing so this will be so easy. Changing his diet seemed so much better than medicine, surgery, or the alternatives that could have been worse. I didn’t realize how difficult cross-contamination would be so we went from only Hunter gluten free to a 100% gluten free household. The relief was shortly followed by regret. When I stopped having the migraines (and other medical issues) that had tortured me since age 4 and started to feel better, I realized that Hunter’s condition was my fault. I realized that I had passed on something that was going to make his life difficult. It didn’t help that one day my mom said that she wished I was never born, because of the way that I suffered with my health and the spiral into what we were currently dealing with Hunter. I got mad and said that never in a million years had I ever thought that about Hunter. To be honest, when my mom said that I wondered if I felt the same way. I wondered if I would have never had them would everything have been better. If you knew that you could pass on something that could increase their odds significantly of different forms of cancer and if not 100% gluten free his immune system is compromised causing him to get really sick. I wondered if I would ever say anything like that out loud to Hunter and I knew my answer was definitely not. I love my mom more than anything, but it was hurtful and unproductive. It made me question everything for a brief moment before I told myself that I had to be strong for my family.
I got through the beginning with a big smile on my face for my boys while I was really struggling with all that went into keeping Hunter gluten free. We stopped going to see family who didn’t understand or agree with the gluten free lifestyle. People intentionally gave Hunter gluten like I was some over-reacting mother doing it for attention. Hunter has the severe side of classic Celiac Disease symptoms so it was clear what was going on. We couldn’t get them to understand so I had to cut off from some of the people who mattered the most to me. I felt so hurt though. Our family was going through one of the hardest moments and I was bearing the weight on my shoulders.
Let’s fast-forward five and a half years…
Hunter is a happy thriving 6 year old. He has way too much energy, but for someone who use to sleep 18+ hours a day you won’t hear me complain about the over-abundance of energy that my happy-go-lucky boy has. I have never met anyone like him. I am glad that I overcame the obstacles to help him be the strong, kind child that he is. That doesn’t mean we don’t have tough days.
- Hunter starting school has been hard. Even as much as I do to make it easier on the school, last year Hunter had bronchitis over 15 times. I fought and I fought. I educated them on how to keep him gluten free. But at the end of the day, I was told they didn’t have time to wash hands or tables to keep cross-contamination to a minimum. I feel like it’s the world vs. us! However, as the mom, I have an obligation to keep fighting the fight to get Hunter’s needs met. I usually am nice about, but sometimes I have to be demanding. When it’s all said and done, I want my kids to know that someone is always on their side standing up for them….that’s me! I am the biggest supporter of my boys and how awesome they are!
- I still cry sometimes in the grocery store when our regular brands are out of stock (or have changed their formula). It may seem insignificant, but it’s not to Hunter & I. I just want to get in and out of the store, but instead I have to read a ton of labels only to find nothing.
- Hunter has what we call “Robot Teeth”. Due to his poor early development, Hunter had to have crowns put on all of 8 of his back teeth. Of course, he gets teased at school for kids saying he had cavities, but it was lack of development. Last year we got the pleasure of spending thousands of dollars to put him under to have the procedure done. With all of the children who died from un-monitored in office dental procedures, I knew with an auto-immune disorder that it was worth the extra money to avoid complications. I felt embarrassed by the whole situation though, because I didn’t want people to see his “Robot Teeth” and think I was a bad mother. Why are we so hard on ourselves because of what others will think?
- Hunter never complained about being gluten free until this year. I assume it happened when he started going to a full day of school. It is so unfair that I am gluten free. I try to build that connection, but we are gluten free together! But who am I kidding, I know that no matter what age you are that it does feel REALLY unfair. From time to time, he says something like I wish no one was ever gluten free. It breaks my heart a little to know what road he has a head of him. I know there are worse situations, but it’s okay to accept that his life will be different.
I truly believe that God doesn’t give us more than we can handle. I have really struggled with that thought though. I have really struggled with the why would God do this. I could try to do all of this without a higher power out of anger, but it’s that higher power that reminds me that everything happens for a reason. While the last 6 years have been a roller coaster of emotion, I can at least say that I am so thankful I am able to be the mom that the boys need me to be. My husband and I weathered the storm. He is present now in our life. He finally listened and heard that I needed him. The thing about being a strong woman is that people often think you don’t need their help, because it’s hard to ask for it. Thinking back years ago, I don’t think I ever could have imagined the kind of strong person I would turn out to be. Sometimes I still feel the guilt of resentment and regret of what I have passed down to Hunter or the situation we are dealing with. At the end of the day though, Hunter was meant to be and I was meant to be his mother.