An Uphill Walk Down Memory Lane

JackJack has had an on-again, off-again bug for the last 8 days or so. He is NOT one of those sweet, snuggly kids when he is sick - he is a misery. He screams and fusses, demands to be held and then scratches once he's up. He whines. He pouts. He kicks. He screams. And screams. And screams.

JackJack on a happier day.

This is not enjoyable, but in its own odd way, it makes me so thankful. Because this ugliness was the way he lived for the first 15 MONTHS of his life... it was like round-the-clock colic garnished with a side of pure meanness and the only person he wanted was Mommy. By the time he was 8 months old, I found myself sobbing on the bathroom floor, gasping for breath between the sobs, sure I couldn't handle another day - another hour - in this horrendous situation, let alone figure out how to ease the havoc it was wreaking on my other children. I prayed that all this bad temper during the day would at least make him a good sleeper...

You can see that, even in sleep, he was unhappy and needed Mommy. He was a terrible sleeper - arching and tossing and turning all night long.

At 15 months, after a consultation with a holistic pediatrician (at the recommendation of my friend Kim), we finally found a pediatrician who agreed that there were two major signs that something was definitively wrong with JackJack and we started taking action.

Why it took me 15 months to figure out that JackJack might be a celiac -- considering his father is one -- is beyond me and I still feel guilt over taking so long to put the pieces together. Looking back, I think these were my mistakes:

1. I accepted too easily that this was my new life, that this kid just had a rough personality and it was my burden to bear. I needed to be ready to fight sooner (I will never, NEVER accept a metaphorical pat on the head from a doctor again.)

2. In all my reading after Big E.'s diagnosis, the earliest case I read of celiac presenting was 2 years old. I never read a case where it presented at birth. I wasn't prepared for that possibility.

3. Because he behaved in the church nursery (where they snuggled him for the full 2 hours he was with them), I thought it has something to do with me and my parenting. The self-doubt almost drowned me.

I wish I could show you pictures of how orange he got from malnutrition or how skinny, but about 4 months ago, I went through all his baby pictures and deleted all the ones that reminded me of how awful it was. I also deleted the one from his first birthday in which he's eating a big old wheat-filled cupcake. My heart seizes when I think about it.

In the past 8 days, he has almost driven me to distraction. Which has made me:

• Thankful for the joy of a little boy he is now;
• Grateful that we did survive those 15 months (I was a moon-eyed idiot at his second birthday, just couldn't keep my eyes off of the sweet thing he's become);
• Humbled over how severely I lacked compassion;
• Relieved for Big E's celiac because without his diagnosis, we wouldn't have had a clue what JackJack was facing. We would be struggling with him even now.

For all mothers out there who have children with chronic disease or disabilities, my prayers are with you this week. I know you are facing things the rest of us can't begin to imagine - logistically, physically, emotionally, spiritually. May the rest of us hear your unspoken needs in our hearts and rise to help you.