Purple Stew: A Journey to Joubert Syndrome

By Karen Tompkins

This is a book about Erin Tompkins, my daughter. It is also about my journey to being the best mom I can be for her needs. Erin has Joubert Syndrome, a very rare genetic disorder that disrupts the messages between her body and brain. For more information on this disorder or to find how how you can help, visit the Joubert Syndrome and Related Disorders Foundation on the web.

• Language: English
• Publisher: Lulu.com
• Release date: Apr 7, 2014
• ISBN: 9781312078802

Book preview

Purple Stew: A Journey to Joubert Syndrome

TABLE OF CONTENTS:

Purple Stew:

A Journey to Joubert Syndrome

APPETIZER

Making a purple stew. Whip whip whip whip.

Making a purple stew. Scoobi-doobi-doo.

With purple potatoes and purple tomatoes

Fancy meeting you in a purple stew.

...Children’s game

I usually order clear soups...chicken noodle, minestrone. Safe, well known, comforting because they’re common. But still, I always entertain the notion of something more exotic when I go to order. Perhaps seafood chowder, Cajun gumbo...but Purple Stew??! The idea intrigues me but my appetite for comfort always brings me back to chicken noodle, predictable and easily identifiable chicken noodle.

So, I place my order. Occasionally I wonder briefly why some people would ever order stew. The ingredients always appear to be vague representations of their former selves. I’m never sure what taste I’m going to experience until it’s been bitten. What would I do if I bit into a big chunk and then discovered I didn’t like it?

I have to admit, the few times I’ve been served stew at a friend’s house it has been a pleasurable experience. Aunt Evelyn’s stew was one of these. A perfect blend of vegetables and herbs that made me relax and enjoy the surprising harmony of flavours. But it wasn’t enough to prompt me to order it voluntarily...and I definitely wasn’t ready for the purple kind. Perhaps no one is.

MAIN COURSE

It’s been six years almost to the day and I feel as if I’m right back where I started. Sitting beside my daughter who is hooked up to more wires and machines than I can count while people in pastel cottons scurry busily, brings back more emotions in me than I wanted to remember. I’d worked hard to forget the terror, the confusion and the anguish of those first days when I realized I might never know the baby we wanted so desperately. After two miscarriages, to have come so far only to lose another child; I was just as afraid of losing myself to the overwhelming feelings of despair as I was of losing her.

Erin entered this world and she was perfect. She still is perfectly Erin but at the moment of birth she also fit my ideal. When they laid her on my stomach, she sang a cute little ah with her first exhale. She scored nine, nine, and ten on her APGAR ratings and as a mark oriented teacher, I was proud and relieved. By the next morning, my image of perfection was not being realized. Because of a staff shortage, there was no one to help me learn how to nurse my new daughter and I refused to give her a bottle. Kevin remarked that her breathing was irregular but the doctor's called it periodic breathing ...quite common in preemies (Erin was thirty-eight weeks and eight and a half pounds.. not quite preemie standards!)

I never registered Kevin’s concern at that point. Perhaps it was the thirteen hours of difficult labour. But I think I was still so enthralled that she was here! My little Erin with perfect fingers and toes, chubby little cheeks and a button nose. She was everything I had dreamed of . I held her and changed her; rocked her and sang to her. Early in the pregnancy I had purchased a tape of Disney lullabies and learned three of them (Baby Mine is still a family favorite) and I was overjoyed to be finally using them. I was thrilled with all the little details of my new mom routine: memorizing her face and hands, inhaling her new-baby scent, choosing an outfit for her first picture. I was oblivious to anything that didn’t fit into the perfect world in my head.

I never noticed a thing...except I couldn’t get a handle on the nursing. Erin wouldn’t latch on and when she did, she couldn’t sustain it. But the hospital was busy and noisy and I figured it was my fault. By Friday, she still couldn't nurse and was developing jaundice. I consented to water to keep her from dehydrating under the lights.

Then came early morning Saturday feeding. It took a nurse and I one and a half hours to get her to latch to no avail. Erin was extremely