Parenting Young Children While Managing Crohn's

My daughter, age 4, wore her frilly lilac Easter dress with ruffled white socks and black patent leather shoes. She looked terrified as soon as she entered my hospital room and saw all the tubes.

It was the end of May, and I had just undergone my first small-bowel resection the prior day. I exchanged a fierce look with the adult who brought her. I had insisted that she not visit until I was out of bed and moving around quite a bit so she wouldn't be so scared.

Apparently, that wasn't convenient.

After at least 25 years of experiencing symptoms of Crohn's disease and undergoing dozens of unremarkable barium studies and lab procedures, I was diagnosed at age 31 with this illness. My daughter was one month old.

Shortly after the May surgery, I became a single parent with no siblings and aging parents several states away. I was, in every sense of the word, alone. My initial panic as far as being able to support us financially subsided to a dull roar after the first year. I was then able to concentrate on being a decent parent 365 days a year.

My daughter is now 28, and I've undergone 5 Crohn's surgeries. Here are the most important lessons I learned for parents with this condition who also have young children:

Treat illness routinely. Even toddlers are able to understand that mommy or daddy is right- or left-handed by watching their parent reach for toys. Establishing the presence of an illness without embellishing its importance can happen the same way. Mom or dad has blonde hair, green eyes and Crohn's disease. The more you treat the illness as an everyday part of life, the easier it will be for the child to accept. Kids understand that some parents have to travel on business; they'll also accept that a Crohn's parent has to be hospitalized or go horizontal at home now and then.

Always have a backup caretaker. This was hardest for me. When my daughter had one of many ear infections, I had to ask a friend to take her to the pediatrician while I was in the hospital. Without a family nearby, you'll need to find a few willing friends or even former co-workers to help. It's good for your son or daughter to see this individual a couple of times a month so they can get used to each other. The sooner you get over any guilt at having someone else take on temporary parenting duties, the fewer bumps you'll experience when they do.

Limit information wisely. Never lie. Never brush off a question. Never offer more information than is necessary. Randy Pausch is a Carnegie Mellon professor who skyrocketed into Internet prominence after contracting terminal pancreatic cancer and delivering a now-famous "Last Lecture." Faced with a projection of just months to live, he asked what he should tell his three children. The professionals he consulted advised him to reveal only as much as they could handle and to avoid letting them know he was so terribly sick until he was bedridden. After all, they reasoned, adults are having trouble with the news, so small children could never handle it.

Create time for yourself. This doesn't refer to taking time for a grocery shopping trip without little hands grabbing stuff off the shelves. It means finding a slot or two each week where you can just be by yourself and recharge. Crohn's disease takes both a physical and emotional toll. During this period, you are allowing yourself to be a patient and acting accordingly. You need at least half an hour uninterrupted twice a week.

Let children stay children. Patients with Crohn's disease often lack the support of fellow sufferers. Until you have experienced the urge to slap every healthy-looking individual you pass on the street, you probably haven't come to terms with the illness. There is a temptation - especially when you have just one child - to make him or her a confidante. Pretty soon, your child is in the uncomfortable position of being expected to behave like an adult. Kids are perfectly capable of comforting a sick parent with a pat on the head or just by cuddling. They don't need to be adults.

Avoid overindulging. The temptation is admittedly great. You can't do all the physical activities healthy parents manage, and you often have to change plans at the last minute due to your health. You might also change employers more often than most. Don't give in to guilt and overindulge your small child as far as discipline or material objects. If you do, you'll be setting your children up for tantrums and selfishness as an adult.

Live in the present moment. When you have them, cherish the really wonderful days when pain is minimal, you've only been to the bathroom half a dozen times and the sun is shining. Just for that day, put away your identity as someone who has Crohn's disease. Be a parent and an individual. Chances are, these are the days you'll remember most when your children are grown.