Giving ‘Till It Hurts!: Parenting a Child with Special Health Needs

Let's start with Janice, a typical mom with special concerns:

Janice sat on the front stoop with her head in hands. The rays of the setting sun were streaming in through the rose trellis but on this evening she didn't even notice the fragrant shadows dancing in the golden light. She just needed to get out of the house, away from him and away from the fighting.

"I dearly love my kids but sometimes I hate being a mom," she had confided to her best friend, Kelly, over coffee just that morning. "I feel like I am constantly fighting them over something. If it's not the TV or video games then it's homework or money or chores. That's bad enough with the older two but when Tyler refuses to do his medical treatments it just sends me over the top. He knows that if he doesn't take care of his lungs, he'll die but I don't think he cares." Tears welling up in her eyes, Janice continued, "He's sixteen and will soon be on his own. When he turns eighteen, the doctors can't even give me any information about how he is doing. Without me there to nag him into compliance, I know that he is going to take years off his life. He just doesn't get it. I don't know what to do. I'm worn out and I feel like a complete failure as a mom." Kelly had nodded and gently patted Janice's hand. "It sounds like you are having a hard time. Hang in there; you're a great mom. It will get better..."

Janice sat on the stoop recalling Kelly's encouraging words but she was having a hard time believing things would really get better. She'd been here before. Sure, things improved for a little while but then Tyler would do something to trigger another crisis. She recalled the last one: when she had discovered that he was throwing his meds into the garbage can at school. One of the students discovered the pills and reported it to the school officer. There were plenty of rumors flying around about the discovery of the drugs until one of Tyler 's buddies recognized the pills as pancreatic enzymes. Even up to the end, Tyler refused to 'fess up. And then there was that time when the school bully made fun of him because of his cough. Tyler decked him and was suspended for three days. Tyler was clearly having a hard time coping with having cystic fibrosis.

Janice just didn't know how to talk with him anymore. She sighed. Kids today give parents enough to worry about: sex, drugs, alcohol, eating disorders, cutting. But, when there are life and death medical issues on top of it all, it seems like just too much.

"How did it come to this?" she whispered to herself. She remembered when Ty was a little boy. He was so eager to please that it didn't take too much effort to get him started on his meds. Oh sure, he'd hem and haw every now and then but she'd promise him a special treat and he'd comply. It didn't take long until he began demanding, "Where's my treat?" upon completing his medications. Janice, also eager to please, made sure she had a plentiful stock of candies and small toys on hand.

This bribery thing had bothered Janice a little. She kind of felt like he was holding her hostage but "kids need to be motivated; I'll do whatever it takes to get him to comply." Besides, she didn't want to make his life tougher than it already was; she felt really bad for him. And, if truth be told, she really didn't have the will to fight him. It was so much easier just to give him the treat. Unfortunately, the treats starting getting bigger and bigger: a new snowboard for a month's worth of treatments; a trip to Disneyland after a hospitalization for IV meds. Tyler always wanted more and rarely seemed grateful. He could easily bring his mom to her knees with a simple refusal to take his life-saving medications. To make matters worse, Ty blamed her when things didn't go right or when he got sick! There was no question about who was in control of the home but Janice was out of ideas. And energy. She was simply worn out.