Thursday, November 7, 2013

My Son Has Been Gluten Free for 3 Years. Today I Had My First Meltdown About It

 
 
I hesitated to write this post because I don't want to sound selfish, or callous, or like I'm complaining, but I figure that if I'm feeling this, someone else may be feeling it too.

Gluten Free living has become such a normal part of my life that I somehow completely missed the fact that my son has now been gluten free for 3 years. Quite the milestone, considering he's just over 4 and 1/2 years old. Since the start, I have tried to be positive about his diet because to be honest, I was relieved that we figured out what was making him so sick and that it was something that could be managed. The truth is, yes it required an overhaul of our diets, but natural gluten free food is readily available, so I started meal planning to ensure that my son ate a variety of delicious food. I cleared out the cupboards, researched what it meant to be gluten free, started this blog, and reached out to the GF community for support.


Now people who are new to this whole gluten free thing reach out to me for support, and it makes me happy to know that I can help.

I thought I had this thing down. I keep the tone of the blog positive because that's how I feel most of the time about my son's illness- that with positivity and some creativity, my son won't miss out on much. So far, he hasn't. I know that things will get tougher as he gets older, but up to this point we've been able to manage fairly well.

I was so concerned about making his dietary restrictions a non-issue for him, that I failed to realize the stress it was putting on me. I'm not going to pretend that it's the same as caring for a child with severe special needs, or one who has a fatal illness.  Still, the fear of my child getting sick from something he eats is very real, and the pressure on me to make sure it doesn't happen and the worry I feel when it's out of my control are very real.

People talk about feeling depressed, or out of control, or frightened when they are first diagnosed, or when they realize the magnitude of the task of caring for a child who is gluten free or who has Celiac Disease, but I didn't feel any of those things at first. I was relieved that he wouldn't be on medication, or disabled, or fighting something that would see him hospitalized frequently, or worse.

That is, I didn't feel any of those things until this morning, when I came back from walking my son to school, saw the package of gluten free cookies I had forgotten to bring to the daycare again, and had a meltdown of epic proportions. I pulled myself together long enough to put the toddler down for his nap, and then sat down on the couch and cried as though someone had died. Actually, I'm still crying.

The second I saw the cookies, the stress of the past three years hit me full force, including the guilt of feeling stressed about caring for my child. I felt guilty that I had forgotten the cookies because now he won't be able to have his afternoon snack. I felt guilty that I had forgotten it had been three years since he'd been off gluten. I felt guilty that sometimes I get angry at him when his behaviour goes crazy after he's eaten something with gluten in it. I felt guilty that my patience levels are often lower than I'd like because after a week or two of caring for a kid who has been cross-contaminated, I'm tired of diarrhea, rashes, mood swings, and out of control behaviour.

I felt guilty because sometimes I forget that I'm not the actual one suffering. My son is. Then I felt hopeless because I would do anything to make it be me instead.

I know that parents of children with food allergies or other food related illnesses are often stressed, but I never put two and two together. Since my gluten free son is the oldest, and he's been GF since he was less than two years old, I didn't experience parenting any other way until the baby came along.

 
  • I didn't realize it could be normal to have a child nap several hours a day and sleep through the night.
  • I didn't know what it was like to only have to change a poopy diaper once or twice a day.
  • I didn't think about how much time I spent reading EVERY. SINGLE. LABEL.
  • I hadn't thought about how much prep work it took just to get out of the house: extra food in case there's nothing to eat when we get there, 10 diapers for a simple outing when he was a baby because he was likely to poop through them all, several bibs because his drooling was out of control, several medicated creams because his skin was full of rashes that hurt
  • I forgot that most parents only have to shop for gifts when invited to a birthday party or event, not prepare an entire separate meal and provide cake too
  • I forgot that most people can just order in on a Friday night or pop out to a restaurant without researching every angle and talking to several people first, and then still worrying that something will go wrong
  • I forgot that most people don't make travel arrangements around food availability, or pack entire meals and snacks for flights, or plan every outing in advance
  • I forgot that most people don't have to send pizza from home on pizza day, or provide art supplies, or bring their own food to the school picnic, or special candy to trade out on Halloween, etc., etc.
  • I forgot that most parents don't worry about their kid being picked on, bullied, left out, or fed something unsafe EVERY DAY OF THEIR LIVES
  • I didn't think anything of the extra prep and worry that comes with knowing that one bite can make my kid sick for weeks
  • I never acknowledged the anger and frustration I felt when the daycare or someone else who was caring for him fed him something off-limits, even though they know better, and how if he was allergic and anaphylactic, he could be dead by now. Instead I feel as though people look at cross-contamination as an unfortunate inconvenience, when it's so much more than that

 I never want my son to feel as though his food restrictions are an inconvenience to our family. I don't want him to feel as though it's work to feed him, and I don't want him to know that my husband and I worry about him because of what he can't eat. I know we're lucky. He's gained a lot of weight and is now in the 40th percentile. He's active, and smart, and funny, and asks the best questions. He's our little Superhero, and he hasn't let any of this hold him back.

I'm so grateful I didn't have this meltdown in front of him.

Now that it's over, I'm surprised I didn't have it sooner. It's okay to be terrified, sad, freaked out, upset, angry, whatever, because the truth is, this sh*t is hard sometimes. I don't know why I never let myself believe that on a personal level. I never judge others when they talk about how hard it is, but I never acknowledged it to be true for me too.

I honestly think this blog has helped me in far more ways than it has helped anyone else. It kept me positive. It helped me look for more and better ways to feed my son. It has put me in contact with companies and organizations providing products, resources, research, and awareness.

Most importantly, it's put me in contact with you, the reader, and with other gluten free and Celiac advocates around the world. The gluten free community is a force to be reckoned with and a wealth of knowledge and encouragement. Help and support is out there, whether you need recipes, products, or advice. I've met so many wonderful people who are doing such good work, that I'm inspired to be better every day. When readers reach out and ask for advice, or tell me that I've helped them in some way, I know that my decision to start this blog was one of the best I've ever made. I don't know how I would have done this without all of you.

Today, I just needed to vent.


My son, a few moths before we figured out what was wrong, and him again, 3 years gluten free.

6 comments :

  1. Thank you! Thank you! Thank you for posting this. I've been going through these exact same feelings even though we're in our 5th year of gluten free living. Me and both of my daughter's have Celiac's and my oldest has done fantastic on the gf diet, my six year old is constantly sick. We've recently been dealing with bacterial infections and the truly awful side affects they have had on her little body and now we're about to go on a strict candida diet since she also has candida. She is 6 yrs old and 34 lbs. The thought of this diet freaks me out and I have lost it more in the last 3 weeks than the last five years. Having people tell me the diet change is no big deal since we have already drastically changed our diet, makes me want to punch someone at times I really appreciate your honesty. You are not alone and its nice to know we're not alone either! =)

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    1. Thank you for your comment. I feel for you and your girls. I don't blame you for wanting to lose your mind when people make insensitive comments. We hear them all the time. It is frustrating, especially since we want to be so positive for our children.

      I really hope this new diet works for your daughter. I think it's normal to be freaked out about it. Just because we would do anything to keep our kids healthy doesn't mean it's not scary to think about. Just so you know, you sound like a pretty awesome mom. It's nice to know I'm not the only one who loses it sometimes!

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  2. Kat, I'm not sure I've said it before, but whenever we talk about your sons glutten issues I'm struck by what a wonderful mother you are. Such an amazing hurdle to overcome with your first child. Living with Rheumatoid arthritis I'm aware how life changing any kind of illness is and it is NEVER wiithout moment of despair or feelings of defeat. You are doing a wonderful job, I hope you are able to celebrate that now that the stress has been acknowledged.

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  3. Saw this yesterday but didn't get a chance to comment until now. How you are feeling is totally reasonable, and venting can be totally healthy. You've been doing an amazing job, and the fact that your son is so much healthier now than he was before he was diagnosed just goes to show you how awesome a job you're doing. While it does suck that some people don't realize how harmful it can be to your son's health when it comes to cross-contamination, awareness and education for this is getting better, so by the time your son is older he hopefully won't have to worry quite as much that he could get sick from cross-contamination... Anyway, you're doing awesome and if you ever need to vent, send me a quick email.

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  5. Vent away Kathleen, it's good sometimes to let it all out. We all need to vent about this at times. I've been doing this since my daughter was 8 - she's 20 now. I've definitely had my fair share of meltdowns along the way. It's great though that you strive to stay positive because that's teaching your children to also look at this from a positive point of view. I think an occasional meltdown is perfectly normal as we navigate through this gluten-free maze in a gluten filled world.

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