Why is it so hard to be real? #ThisIsMe

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…

Hunter&mom2008

If you are looking at the above image and thinking he looks big for his age, I was so upset by the situation that I didn’t even photograph him at that time. One of my biggest regrets now!

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…

Family2012
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.

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  1. I know exactly how you feel. I felt the guilt when my youngest was diagnosed with Sensory Processing Disorder… along with a few other things. I know I suffer from SPD as well, so this had to be my fault. We are our own worst critics… but do not need to be. You appear to have done what is best for your child and no one else should matter. Good for you! Thank you for sharing your story. I pray it inspires others.
    Staci recently posted..Learning to Just Say This Is Me #ThisIsMe #SoFabCon

  2. Thank you for being strong and sharing your amazing, heartfelt story. You are a strong mom and Hunter and your other sons are so lucky to have you!
    Courtney Velasquez recently posted..Case Study: Kmart Outdoor Living

  3. I think it’s awesome that you had the strength to continue breastfeeding even with the negativity that you received! I ended up stopping with my son and went into it with my daughter determined that I would not do that again!
    I’m so happy that you found the diagnosis you needed to get your health back in order!
    Kristy recently posted..5 Quick Dinner Ideas with Solo Plates & Cups

  4. Wow. Amazing post. Thanks so much for sharing your journey in such an honest way. I was there for Jasmine’s keynote too. You and she are both so inspiring. Thanks for being you (& a great mom to your cute boys!)
    Debba recently posted..Spring Snow Brings Rainbows (& also Bloggers & Brands) + Announcing our Winner!

  5. What a beautiful and honest post. Thank you for sharing your thoughts and journey with us. Testimonies like this will help to push others forward, to help them realize how they’re feeling is normal. Real stories are so empowering. Again, thank you.
    Molly recently posted..Moms Listen Up! YOU Can Easily Install a New Waterpik RainFall+™ Rain Shower Head #ShowerMomwithLove

  6. Amber Edwards says:

    What a beautiful, heartfelt story. What a long and hard journey you have been on. It is true, you are the perfect woman to be his mom! I have to battle dairy allergies for my kids. And no one at the school takes it seriously because they don’t require a epipen. As if that is the only reaction that is worthy of attention. But if my kids eat )e “recommended” amount of dairy a day, they rash from head to toe and get hives and are super sick. It’s been a long battle here too. Why can’t people understand that not every persons body is the same? Yours and your son can’t process gluten, we can’t handle dairy in more than one serving every few days. Doesn’t mean they should be neglected by those who are watching our children all day. I am just irritated that the school won’t take a little extra attention to help keep him safe. It’s a child’s life! That isn’t worth a few extra minutes?

  7. I feel for your son having to go through this, and I feel for you as well. Just remember that his condition has nothing to do with blame and judgment on you. You are doing a heroic job in raising him and your other son. To have to cut off relationships and suffer purposeful hurt of body and mind from others is truly abhorrent. I am glad to know Tulsa has you here, you makes us a more tolerant and strong community.

    • Natalie says:

      I don’t really blame people who have a hard time dealing with us and our lifestyle since I can see that’s it is out of ignorance that things are the way they are. However, that doesn’t mean we have to surround ourselves with unsupportive people for their benefit. Thank you for your kind words!

  8. You are a very strong woman. You are doing a great job! My mother in law was diagnosed with Celiac about 4 years ago, so there is a chance my kiddos have it as well. I, sort of, know what you are going through. I always try to keep gluten free items for when my MIL comes visit us, but it is hard. Even the simplest cooking items have gluten. Who would have thought that baking powder and chicken bouillon have gluten in them!?

    You keep doing what you are doing. Stick to your guns. Sooner or later your little one will thank you for doing such a great sacrifice for him.
    Sofia recently posted..30 Things: Dear 16 Year Old Self

  9. So happy to hear that the SoFab conference inspired you to keep writing your story. I don’t think our stories as Moms are ever over… so I won’t say you finished yours. I love that the internet is a place where we can find people going through similar things. I felt so alone when my children were diagnosed with PKU… luckily I was able to find a few blogs that made me feel like others also understood the rare condition. Thanks for sharing. Even though I haven’t shared your exact issues, I have felt the same feelings and have kept them bottled up and separate from my blog.

  10. Wow! Several thoughts here. As a woman who was born with a disability, I always appreciate hearing from my peers who have children with special needs as they try to figure out the best way to help their kids but do so without being a martyr or a complete angel. It reminds me that my mother didn’t see me as a burden either even though I know it was really hard on her at times.

    As a person with bizarre food sensitivities that no one can seem to figure out completely (or some even believe), I appreciate you sharing that side of your journey. It gives me hope that answers will be found for me but also makes me feel less “freakish” for having similar problems that you’ve described that your son endured. (all my symptoms SCREAM celiac but all the multiple testing says no)
    Jamie recently posted..Creative enough: Creativity is in the head and heart, not the hands

  11. Lana Flowers says:

    We all may look so stylized and put together on the outside, but it is shoving aside pride and being brave enough to be real when we make authentic connections. I will never forget your help at SoFabCon at my first twitter party and I will say a little prayer for you, your son, and gluten free peeps the world over. You are strong, brave, inspiring, powerful and genuine.

  12. Thanks for sharing your heart.
    Jasmine recently posted..#ThisIsMe Reflection and Link Up

  13. Wow. I am so sorry you went through that hard time alone! I can’t even imagine. I am glad your husband is now supportive and your son is thriving! My niece has celiacs and had failure to thrive at an early age so I’ve seen it all first hand. Thank you for telling your story. I hope it can help others going through the same things alone and scared.
    Heather McD recently posted..The beauty of Spark of Amber teething jewelry #WIN

  14. I’m so sorry you both had to go through with but you are strong and brave to share your story so that someone else might not feel so alone. Right, now your family is gorgeous. Thank you for being you!
    Cristie Ritz-King recently posted..Why I’m Still Here

  15. As parents we all tend to beat ourselves up over things we really have no control over instead of patting ourselves on the back for taking the steps necessary to make it better.

    This is a time you need to pat yourself on the back! Not all parents are willing to change their whole lifestyle for their children the fact that you are and did should surely out weigh any kind of guilt you feel!
    Kelli Avery recently posted..Is It Possible To Take Your Social Media Exposure A Step Further?? ~ FlipSidez Can Help You Leave Your Mark!!

  16. Oh sweet girl! I’m so glad you shared this story! I know it is going to impact others and I will certainly be more compassionate towards those who must live Gluten Free in a Gluten Filled world!

    In so many ways I totally relate! I have an addictive personality and am strongly addicted to carbohydrates. When I eliminated all sugars, starches, grains, and processed carbs from my diet, I stopped having headaches, upper respiratory infections, chronic fatigue and pain. And I lost 200 pounds. Then I spiraled into depression and allowed myself to resume behaviours and products that were bad for me. I have to get to a place where I truly believe that I am worth the effort and hard choices to keep me healthy!

    And by the way … I am so grateful to you for taking me in this weekend! Thank you!
    Beth Zimmerman recently posted..This Is Me

  17. Being strong for our children is the most amazing gift God could give us. You are doing a beautiful job with your boys. Thank you for having the strength to tell your story.
    JanetGoingCrazy recently posted..I’m whiny and frustrated and I’m getting real – This Is Me

  18. You’re so right that God doesn’t give us more than we can handle. Our pastor actually shared a sermon a few weeks back saying that we were entrusted by God to parent our kids because of our unique experiences that make us the best parent possible for our children. I truly believe this and I find strength in knowing that I can do this and with Him all things are possible.
    Kelly @ Texas Type A Mom recently posted..Socially Awkward, Shy, Introverted, but Genuine #ThisIsMe

  19. What a wonderful story. You are the stronger for this challenge and Hunter is a brave boy. I don’t know how you did it in the beginning. The guilt must have been crushing. Please don’t blame yourself… or at least try not to.

  20. What a wonderful story!!!! You ARE meant to be his mother 100%! I am so glad I got to meet you in person at SoFabCon! You are an amazing person!!!
    Kristin Wheeler (Mama Luvs Books) recently posted..Creating Cool Movies with the Magisto App

  21. I can’t imagine how frustrating and difficult it must have been for you. My kids weren’t sick, but I did have to deal with family members constantly questioning me breastfeeding and doing things like giving them nuts and seafood right in front of me when I’d specifically said “No, they cannot have that.” They would just look at me and give it to them anyway. It was like they would do it to defy me. I’m glad to hear that he is doing well, and you have more support now. I pray that things continue to get better for y’all. You are one strong mama!

  22. Thank you for sharing – what we didn’t know growing up is always amazing.

  23. cool.

  24. What a wonderful story and I’m very happy to read your son overcame his biggest obstacles. I totally love that you love that your son’s full of energy now. :)

    He’ll come to understand being Gluten Free better someday, and thankfully a lot of people are starting to eat that way now by choice. That’s got to help a little?

    sending over big hugs to you and your family. I loved your story.
    Rosey recently posted..Wordless Wednesday (8th Grade Dance)

  25. Wow, what an amazing story. I know it will always be a struggle to keep your family gluten free, but I also think you are wonderfully inspiring and have a great attitude about it. We all have our trials to deal with. There is no such thing as having a child without complications, on whatever level that may be. We should never regret the children God has blessed us with…they also come with immeasurable joy!

  26. Thank you for sharing your story. You are a committed mom and thank God you came through your struggles and learned a lot in the process!

  27. touching story. i know what you’re going through. i had problems with my own son and our own little medical adventure. it’s a process but things get better :)
    Jenny recently posted..Definitely a Mori Girl

  28. I totally believe that God doesn’t give us more than we can handle. I also believe the us is plural. That means he doesn’t give He and I more than we can handle.
    JDaniel4′s Mom recently posted..{Sensory Play} Ice Cream Game

  29. I totally believe that God doesn’t give us more than we can handle. I also believe the us is plural. That means he doesn’t give He and I more than we can handle. I am glad Hunter is so well.
    JDaniel4′s Mom recently posted..{Sensory Play} Ice Cream Game