Putting on the Ritz

Being a mom with disabilities isn't much different than being a mom without disabilities. My kids argue, talk back, and complain about doing their chores. I have to be their taxi for school, voice lessons, outings with friends, and to cart them back and forth to their dad's house to get things they've forgotten. I have to plan for and prepare meals, take care of them when they are sick, comfort them when they are sad, and advise them on everything from love and dating to how to handle a fight with a friend. I wash their clothes and pick up wet towels, keep the bathroom stocked with their favorite toiletries and bring them warm towels on freezing winter mornings. I serve as their alarm clock and help them with homework. I attend conferences and arrange meetings with teachers. I keep up with therapy appointments (for my son, who has an autism spectrum disorder) and make sure he takes his medicine. I am the maid and the mentor. The nurse and the warden. The dictator and the joker. We laugh loud and hard and often. We watch movies together, tease the cat, enjoy a meal out once a month, and share quiet moments of reflection and conversation. Life is hectic and crazy and frenetic and usually messy. There is never enough food in the pantry or toilet paper in the bathroom. There is always more laundry to be done. The garage is often stacked high with garbage that I won't make the kids take out in subzero weather. Every time I open my garage door, I worry my neighbors must think I'm a hoarder. I have a son preparing to take his driver's test and a daughter preparing to go to prep school. Even on the weeks when they are with their dad, my days are filled with mom things that must be done. And I wouldn't change it, not for anything.

My daughter was just accepted to a prestigious college preparatory school we are lucky to have near our home. She can go on the school bus each day and be home for dinner every night, but get a world-class education that will open doors for her that a public school education may not. I worry about her emotional maturity. Is she mature enough to handle the intense academic pressure she will face at this new school? Is she strong enough to leave behind her friends at her current school? Will she make friends easily at her new school? How am I going to pay for this?

Living on disability is not easy. It requires tight budgets, eliminating frills, and, sometimes, eating Ramen noodles for dinner five nights in a row at the end of the month. To add a $15,000 bill to that is mind-numbing in its impossibility. I am always optimistic that I will find a way. No matter the situation, I always find myself saying, "it will be okay. I will figure this out".

And I will. Because a kid shouldn't have to have rich parents to have access to a top-notch education. We don't live at the Ritz, but we are going to be putting on like we do, because my daughter wants this, and I want this for her. So, no matter what sacrifices must be made, no matter how hard I have to work, her funny, sassy, sweet, strong-willed, smart little butt is going to be sitting at a desk at the school she wants to attend next fall.

And I won't rest until it happens.