Special Needs

The text read: “Mom, there’s blood. A lot.” After reading my 18-year-old son’s text, I called a specialty gastroenterology clinic. After giving the scheduling desk my son’s symptoms and birthdate, we had an appointment the next day. A next-day appointment for a new patient with a specialist? Sound the mom alarm bells. The doctor visit was quick and to the point. Two days later: a colonoscopy. Within four days of making the initial phone call, we had a diagnosis: Severe Crohn’s Disease. My 18 year old son had been experiencing gastro-intestinal issues on and off for four years. There was also a period dramatic weight loss and bouts of debilitating fatigue - both of which were written off to teenage hormones....

This is a recounting of a true life event and subsequent episode many months later. My son is ventilator dependent. He also relies on five other machines daily to keep him alive. So car travel looks more like an ambulance ride. And I used to be able to handle it as the lone adult in the car, until the day we left the hospital about two years ago, and it was a horrifying, near death experience. My son does not "transition" well anymore. Meaning moving him from one place to another, especially into the wheelchair or carseat. It's one of the main reasons we moved to home nursing exclusively almost five years ago. Trips in the car meant multiple stops...

Picture it. You are casually strolling the aisles of the grocery store racking your brain for that one item you forgot to write down while wrangling your kids to stay nearby when you turn the corner and spot it. This unfamiliar sight is quietly sitting next to a little boy who is holding his mom's hand while she peruses the frozen vegetables. This unicorn of grocery shoppers has big brown eyes, white fluffy hair, and is basically just begging you to come pet him. This sweet fuzzy sight is a service dog for a child with autism. Service dogs are becoming more and more popular for people with disabilities, and it has become blatantly obvious to me that the majority of the population has...

You read that right. I have aides. Rather, my son has aides (also known as direct support workers - DSWs.) He has four regular nurses and two regular CNAs who care for him. Daily there are two strangers (minimum) in our home to care for our terminally ill, medically-fragile, technology-dependent son. Weekly we also have teachers, therapists, program coordinators, waiver supervisors, nursing supervisors and more enter our home. {Somebody send us a Roomba!!} I am asked frequently what it's like having so many strangers in our home. Well, it's weird getting used to at first. But when you weigh the alternative which is not having the assistance our son needs to survive -- you learn to deal with this sacrifice....

I remember it like it was yesterday - the call from the pediatrician informing me that she had referred us to Children's Hospital in New Orleans. When Salem was 9 months old, I noticed that she was sitting strangely. It wasn't a normal slouch, but was more like she was almost sitting on her lower back instead of her bottom. I didn't know if I was overreacting or if it was something worth looking into. We brought it up at her next appointment, and the doctor scheduled X-rays to see for sure. That's when I received the call that it was more severe and we needed to see a specialist in New Orleans. In a moment, something that I had never even...