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 syndrome, Multiple 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