Welcome! I'm Cookie's Mom. You can learn all about Cookie and why I blog here: About Cookie's Chronicles. If you're new here, you may want to SUBSCRIBE TO MY RSS FEED. Thanks for stopping by! Pull up a beach chair and be my guest, won't you?

Friday, March 30, 2012

Things are going to be a little different around here.

It all started early one morning with a scream. “Mommy! Mommy! My belly hurts! Mommy!” Two hours later when his stomach and bowels were empty, and I was exhausted from repeatedly hauling his 45 pound body back and forth between bedroom and bathroom, he crawled back into bed worn out and slept.

The flu? Interesting that I didn’t get it. I get everything!

When he awoke he was better, and his bodily functions were normal.

This scene repeated itself another six or seven times over the following three months. Sometime in the middle of that period, I started to wonder... These can’t all be the result of multiple flus. He recovers quickly. Sometimes it comes back days later and sometimes it’s a month. I’m not getting sick, and I get everything!

There were several visits to our GP, numerous visits to the hospital, one of them in an ambulance, a referral to a pediatrician and finally a blood test that confirmed my fears.

Celiac disease.

Driving home from the pediatrician's office after hearing the news, Jack sleeping soundly in his car seat, I began to think of what it will mean for him. I thought of birthday parties and other celebrations - how he will be "different" - how he will need to bring his own food and avoid all of the tempting things the other kids may eat. I let myself cry, while Jack slept.

Anyone who has a child with an illness probably knows better than I do what a roller coaster of emotions I am going to experience. Already, I have felt pity, sorrow, guilt, and hope among others.

I felt guilty because my lousy genes are responsible, at least in part, for his illness. I don’t have celiac disease (I have been diagnosed with, among other things, Ehlers-Danlos syndromeMultiple Sclerosis and Hashimoto’s Thyroiditis), but it seems I have passed on a propensity towards autoimmunity in general.

Of course, I am no more guilty - no more responsible for my genetic makeup - than my parents were, or their parents before them. Still, as many moms have done, holding my perfect child in my arms I hoped his life would be different. I hoped that he would walk an easier path than I have. 

Next I felt ashamed for thinking I should be exempt. Why should my child be free of disease when so many other children have autoimmune disorders and life-threatening allergies? 

I didn’t realize how I was holding my breath – anxious – until the call came in today. Jack’s appointment with the GI clinic doctor is in just a few days rather than months.

Apparently, there is a chance of a false positive with the blood test, though the pediatrician has never seen one. So, Jack needs to have his intestine biopsied for confirmation. In the meantime, he needs to eat gluten again - it needs to be in his system before the test. Today was day one back on gluten, and he is complaining of stomach pain.

Helpless? Sad? I don't even know how to describe the feeling of forcing your child to do something that causes them pain and that you know is bad for them.

But the appointment is in just a few days, and so I feel relieved. 

A roller coaster of emotions indeed!

Last night I posted this on Facebook, and it was automatically shared on Twitter:


I can not believe the response I received. My request was retweeted many times and often by people I didn't even know - wonderful, caring people who saw my call for help and stepped up.

Today, though I am sad, I am also hopeful and so very grateful. Thank-you to all of my Facebook friends and Twitter angels for your help and support!

Celiac disease.

Today, writing those two words bring tears to my eyes again. BUT, I know we’ll be okay. 

I’m a resourceful, proactive mom. Since the diagnosis two days ago, I have bought six cookbooks, subscribed to at least as many blogs, followed 20 or 30 new tweeps and liked several Facebook pages, all related to celiac disease and gluten-free living. I have already mailed my membership form to the Canadian Celiac Association and entered important information session and support group meeting dates in my calendar.

In minutes or hours or days, something else will hit me - I'll think of some challenge or sacrifice that Jack will have to make, or perhaps I'll start to ruminate on his potential for a future of ill-health - and I will be sad again. 

I'm certain to also have moments of feeling sorry for myself. Even on the days when I can barely move, I will have to do the hard work of planning for, shopping for and preparing gluten-free food for my son.

But then I will focus my energy on solutions and connecting to the supports available to me, and the sadness and self-pity will dissipate. 

Things are going to be a little different around here. I haven't posted in a couple of weeks, not because I didn't have anything to say. I just didn't know how to say it. I have been thinking for months about whether or not continuing to blog makes sense right now.

My son needs me, and time is becoming less and less available. Much of my time these days is spent managing medications, health maintenance routines and diet.

Even after months of debating the issue, I still don't know where this blog is headed. I have had thoughts of taking a lengthy sabbatical, and that may yet happen. Still... this blog may be just the place for me to explore my feelings around all of this and to play some part in making a difference in the lives of those who are suffering from any of the various ailments that affect my family.

I'll keep you posted!

In the meantime, if you have any resources for celiac kids or gluten-free living, please do pass them on, will you?

Thank-you all so very much for your support!

~ Sue

34 comments:

  1. When I saw you post on FB about Jack being diagnosed with Celiac's, my heart went out to you. I can't imagine having to re-vamp his whole eating/diet and how it will affect his life. I do know though that one of Teen B's bestfriends grew up with Celiacs and never felt deprived or disadvantaged and it was because her Mom made sure not to let that happen. Sydney would go to birthday parties with cupcakes, cake and pizza (all gluten free) that she could eat, right along with her friends and not feel any different. Mom would call ahead to find out the menu and then make the same for Sydney to bring along with her. Never met a happier, well-adjusted young girl. SO, I know Jack will not suffer having you as a Mother. He's a pretty lucky guy to have been born by YOU!

    *Hugs*
    Bruna

    ReplyDelete
    Replies
    1. Thank-you, Bruna. I like to hear these success stories. I know that Jack won't even miss it eventually, and some day may not even remember having ever had wheat. Thanks so much for your support these last few days! xo

      Delete
  2. Oh Sue, I am so sorry to hear this. For you and your litte one. It is not fun suffering along with your kiddo.

    I hope things get better in your household and that the diagnosis turns back negative. Crossing my fingers for you mama.

    ReplyDelete
    Replies
    1. Thanks mama! :) Whatever happens, just knowing what we're dealing with is half the battle. The rest we'll figure out.

      Delete
  3. So sorry to hear this Sue. But it sounds like you are already responding with all the strength and love that a mother can. I guess it will be a rough transition for awhile, but like Bruna said, I've had guests at my children's birthday parties who have special diet needs and we are only to happy to accommodate them as best we can. I am sure other parents will do the same for you.
    Sorry I don't have more information for you.....only lots of hugs and encouraging thoughts!

    ReplyDelete
    Replies
    1. Thank-you, Leslie. Your hugs and encouragement are what I need most! :) I know it will all work itself out. I had someone suggest making up cupcakes ahead of time and freezing them for last minute celebrations, which I think is brilliant! Definitely going to do that.

      Delete
  4. So sorry to hear about all you are dealing with right now. Just know that your bloggy community is behind you, no matter what. <3

    ReplyDelete
    Replies
    1. Thanks Amanda. It's good to have you guys to lean on! :)

      Delete
  5. Sue:
    Firstly I want to say that my heart goes out to you with this diagnosis because any challenge our children face pulls at our heartstrings. I want you to know that I write both from a professional standpoint (not with Celiac but with challenges) through being a sp ed teacher and advocate for students with different needs and from a personal standpoint (again, not Celiac but we have 3 adopted children; one has ADHD, another has schizophrenia and bipolar disorder, and the third has anxiety disorder that seems to be turning into something worse).
    What I'd like to say first is that it's okay for you to feel exactly as you do right now. This is very normal. Whenever we learn of a disability or disorder faced by one of our children we go through the grieving process (shock/denial; pain/guilt; anger/bargaining; depression/reflection/loneliness; adjustment (the upward turn); reconstruction/work-through; acceptance/hope. We all go through that in our own time and in our own way. Just remember that you have friends (offline and online) who are there to support you as you need it. Your emotions will continue to be all over the place for a while but will eventually reel in to a more manageable set of emotions with the occasional spike of anger/depression/anxiety/helplessness/etc. Until then, be gentle on yourself.
    The bottom line is that nothing has changed for Jack; he still is loved and is surrounded by people who will make sure his life is great. You, however, are in transition. But know that you will make this transition and, once made, Jack's life will not be noticeably different to any of his friends' lives (so, he takes his own pizza to parties). YOU will make sure that he doesn't suffer and that's the best thing you can do not only for him but also for you...for it will keep you moving forward and that's what we parents need in order to feel we're doing our best.
    There's a great video series on Celiacs by Dr. Gary Kaplan. I've put the link for the first in the series. The other 6 should come up alongside this one. I always believe knowledge is power and this series helps put things into perspective.
    http://www.youtube.com/watch?v=SX2rTfIdpNc&feature=relmfu

    I think the thing you need to hold on to right now is that Jack's life won't change. He'll still go to college, get married, have children, change the world and do everything else he's slated to do. The only thing that will change is his diet. Hold on to that knowledge as you go through the transition of accepting your child (whom you want to protect) has a challenge to face.

    In regard to blogging while you go through this transition...do what feels right at the time. Know that people will understand and support whatever you decide to do.

    I was looking to see how many of your posts I'd shared and was shocked to see 0 (I share daily) but think it's probably because I'm so new to the tribe that this is the first one you've posted. So, belatedly, let me introduce myself. My name is Rhia and I'm a new tribemate of yours. I have children with severe mental illnesses so can relate to much of your spiraling at the moment. Please contact me if you feel I can help you in any way.

    Take care of yourself and your family.
    Rhia

    ReplyDelete
    Replies
    1. Rhia, this is what my motto is too: "knowledge is power". Thank-you for your kind words. I am trying to allow all of the feelings to just be what they are - allowing the thoughts to come and inform my actions. I love this: "He'll still go to college, get married, have children, change the world and do everything else he's slated to do." Thank-you for your offer to help. So nice to have met you.

      Delete
  6. I am so sorry you are having to go down this road with your son. I don't personally know what it's like, although I do have a friend who needs to eat gluten free and her daughter does too. It's been a few years now, but she seems to be doing OK with it.

    I for one want to encourage you to keep blogging. You know what I go through with my husband, and blogging is SO GOOD for me in regards to helping me process and deal. The community that comes with blogging is an amazing resource. Take advantage of it!

    Wishing you guys the best!

    ReplyDelete
    Replies
    1. Jen, thanks for that reminder. You're right. Blogging has been so helpful. We moms, especially if there are any additional challenges to face, can feel so isolated at times. Blogging and this fabulous community definitely helps. Thanks so much for your support, Jen.

      Delete
  7. Sue when I read this I too felt so sad for you. Having gone through many different tests and dealing with my daughter and her special needs I know the hell we parents put ourselves through whenever our children have to deal with anything. Also, seeing your child in pain is it's own awful hell. I'm so glad you will be seeing the doctor soon. Sue, from my own experience feelings just come, and the best way to deal with them is to just feel them. You are handling this so well and I'm so glad you have been getting support from the online community!! Please know you, your son and your family are in my thoughts and prayers. Much love!

    ReplyDelete
    Replies
    1. Thank-you, Kathy. It helps to hear your words. I know something of your family's story and I admire your strength as well as how you handle everything with such openness and grace. I'm happy to have people like you in my life to look to for guidance right now!

      Delete
  8. I will be praying for Jack and the entire family. It is so hard being a Mommy and dealing with your child's illness. You will have to decide about your blog and its future, but one thing I know that if it hadn't been for the internet I wouldn't have found out what was wrong with me. Now having the support of my online community has also helped tremendously. I am so glad the appointment is coming up. Keep us updated when you can. Hugs, Lisa

    ReplyDelete
    Replies
    1. Lisa, thank-you. I'm with you there. This online community has been such a huge support for me. You have been in my thoughts too ever since your POTS diagnosis. I do not have POTS, but I know that some people with EDS suffer from POTS as well. I hope you are keeping well, and though I'm not so good at making the rounds to others' blogs these days, I think of you often! Hugs back!

      Delete
  9. Wow. A shock for you and your family. I am sorry to hear it.

    I am glad you were able to find out answers to what has been making him so sick.

    My only connection to celiac disease, is that I taught a little boy last year who followed a gluten-free diet. He had the gene, but did not have celiac disease (it was dormant), but one of his 3 siblings did have it and so did his Dad, so the whole family followed the diet. HIs mom would do similar things to a previous poster, on pizza day make gluten free pizza, find out what we were eating at celebrations and send his own version. She also used to send in the most delicious muffins for me (gluten free) and fresh out of the oven.

    ReplyDelete
    Replies
    1. Thank-you Lisa. It definitely helps to have answers, though the initial shock is a bit of an adjustment. People are definitely becoming more accustomed to seeing kids with allergies and food intolerances, so having a celiac kid these days is SO much easier to manage! Jack's new diet is much like mine has been, so in ways it will actually be easier to manage - one diet instead of several.

      Delete
  10. I watched a documentary once on BBC about a "raw" family. They were asking the teen girl if she ever resents not being able to eat cake with her friends. She looked at the reported puzzled and said: 'I never tasted one so why would I?'
    I just remember her confidence and seeing the world from her perspective. I think with you as a mom Jack will grow up never ever viewing his allergy as a handicap. I wish he never was diagnosed off course but you took words out of my mouth: "I’m a resourceful, proactive mom."
    It is just a bump Sue. Jump high and call us when you need a friend to listen and hold your hand.

    ReplyDelete
    Replies
    1. Thank-you, Stasha. :) I hope that Jack will not feel deprived. By the time it is even an issue, I imagine that he will have met several other kids just like him and the world will be even more accustomed to and accepting of kids with dietary restrictions.

      Delete
  11. We're here for you Sue...lots of love and support! Now you can be the cook you've always wanted to be! ;) Don't forget to listen...God will tell you exactly what you need to do to take care of Jack.

    ReplyDelete
    Replies
    1. Thank-you, Beth! :) The cook I have always wanted to be - HA! Yes, I have been pondering the irony of this. Most of my life I have wanted to avoid spending any time in the kitchen, and now most of my time is spent there. Ah well. It's definitely worth it to have healthy, safe, delicious homemade foods!

      Delete
  12. Good luck with everything. It's hard but not impossible, at least you know the cause and you can work with it.

    Bette Hagman's cookbooks are great gluten-free cooking - everything from cookies, bread, entrees, etc.

    http://www.amazon.com/Bette-Hagman/e/B001KHLIJY/ref=ntt_athr_dp_pel_1

    ReplyDelete
    Replies
    1. Thank-you, and you're right. Knowing the cause means we can also know how to deal with the problem.

      Thanks for the book recommendation! I'll check it out.

      Delete
  13. Oh, Sue...I'm SO sorry!! I had no idea all of this was going on. You ARE a proactive mom, and he is lucky to have you!!
    I have no resources for you...just a shoulder to cry on if you ever need one.
    xo

    ReplyDelete
    Replies
    1. Thanks Jen. That's all I really need. :)

      Delete
  14. I am so sorry that you are going through this. You are an amazing mom and you will all get through this. It might be hard at first, but I know that it will all be okay.

    ReplyDelete
    Replies
    1. Thank-you, Barbara. :) You're right. It's going to be okay.

      Delete
  15. Sue, my thoughts and prayers are with you and Jack. Love that you're proactive AND being honest with your emotions about it all. It's got to be hard. It's so cool that the twitter and FB community had such a great response! We're here for you.

    Judester

    ReplyDelete
    Replies
    1. Thanks Judester. Miss you guys! Your support means a lot to me.

      We are all okay here - just muddling along like everyone else, I suppose! Pretty soon we'll have it all figured out and have adapted our diets and so on. Eventually, I'm sure, it will hardly matter to us at all!

      Delete
  16. :) Miss you too. And you've got our support. My son's friend was just diagnosed with it too. He's 13 years old and missed months of school before they figured it out. I guess what I'm trying to say is that you're not alone. If I can help, you have my email. ;)

    Judester

    ReplyDelete
  17. I know the feelings you are describing. When we found out my daughter had a peanut allergy our worlds changed completely.
    I'm thinking of you and your family xoxox

    ReplyDelete
  18. I believe when we become parents, it's like the first day of college classes - there's a lot of learning to do.

    We don't get to sign up for all our courses, though. Some are signed up for us.

    Sure, we all get the "weaning 101," "terrible twos" and "intro to dating" (I'm just starting this class!), but some are dropped into our schedule without us knowing.

    Courses such as "peanut allergy" and "celiac disease."

    Here's hoping you'll post again soon, and share some of what you've learned in this course you didn't register for. Such a beautiful site, beautiful child, and wonderful writing here.

    Hope we'll see more, soon.

    ReplyDelete
    Replies
    1. Eli, thank-you for your encouraging words and for taking the time to connect! I'm working on coming back - just sorting out logistics.

      Delete