"Life has made me very tired. I can't decide whether to keep going or not. Most everything sucks...and it has sucked my breath away."
That was my Facebook status last night before I went to bed. Short. Not so sweet. But directly to the point. And I spoke for both myself and Joan.
What I typed had followed up a very long conversation between my wife and I in assessing our present situation. We do this a lot these days, usually toward the end of every month when deciding where each and every precious dollar should be spent. It is an unpleasant and unwanted routine that too many American families have recently incorporated into their lives but one that special needs families generally have been familiar with for quite some time.
At lunch, after dealing with a smart-assed Subway cashier - something we really didn't need today or any day for that matter, I relayed some of the responses I received this morning which ranged from very kind words of consolation to the suggestion that I go see a doctor. Joan's reply? "They really have no idea, do they?"
That is the God-awful truth. Unless you have been dealt this same or similar deck of cards, one that is about 10 short of a full set and desperately missing a few face cards, you really don't have any idea. You have a sense of the frustrations, pains, heartaches, headaches, backaches, defeats, discouragements, disappointments, humiliations, disillusionment, and adversities of exceptional families but until you live with our particular challenges you will never have any real idea of how incredibly debilitating this life can be...or in our case, has become.
Now before you decide to move on to the next blog or check the next update on Facebook thinking "I think I've had enough of this whining," let me say that we were once just like most of you. Eleven years ago we were just an average ordinary middle class typical family. Two incomes provided us two vehicles, a couple of vacation weeks each year, a very well-kept lawn, weekends tailgating with friends at our Alma-mater, and most importantly money in the bank. Even when a mid-term ultrasound revealed there might be something unique about our second child nothing about it warned us that a personal natural disaster lay before us that would chew us up, swallow the leftovers, and then spit us back out scarred, scared, and shattered. To be honest, we really had no idea.
Within a short time we became a one income family with two-income bills. To make ends meet we depleted all of our savings (mostly in retirement investments - boy, did the IRS love us!) within the first few years of Ben's life. Our family business closed leaving me without a job with flexible hours and even more debt. Joan and I practically earned nursing degrees by learning how to manage our son's medical and physical care. Strangers living among us became a way of life. Time devoted to leisure activities disappeared. Life became measured in how quickly we dealt with the next impending crisis. And for the record we're still driving the same two vehicles.
Despite the bitching and moaning we are extremely thankful for three specific things: 1) Joan securing a very good job that allows us to purchase health insurance, 2) Ben very early in his life was able to qualify for a Medicaid waiver, and 3) so far we have been able to keep up our mortgage payments. Some of you who have followed our blog or my social media outlets for a long time know that for the most part I keep a fairly positive outlook on things. At the moment Ben is the healthiest he's ever been. Despite the lack of art festivals this summer we have (barely) made ends meet due in large part to the benevolence of one of my brothers and a few timely commissioned paintings. So what has changed that has led to darker storm-like clouds hovering about this blog and our spousal persona?
Even though #1 is still fairly secure, "thankful things" #2 & #3 are no longer certainties for us. Those two vehicles I mentioned are being nursed along with duct tape and sleight of hand. The siding on part of our house is in such bad shape that the insulation underneath is exposed to the elements. Carpenter bees have almost completely eaten through our 12 front wood windows. The entire house needs painting which I would gladly do if we could afford the paint. Essentially 11 years of neglected maintenance has raced on by us and overwhelmingly taken the checkered flag. But that's not the part that really upsets us.
The part that upsets us the most is the wake still left from the original disaster; the things that no family in our situation could prepare for or even anticipate. We are in desperate need of a wheelchair ramp to our home, a lift for one of our vans, remodeling of a bathroom to make it handicap accessible for Ben's basic hygiene, and new flooring in the main area of the home in which we spend the most time caring for our son. These are essential things that should be covered under his Medicaid waiver but are now on some waiting list that might be gotten to when the axe quits falling in South Carolina's state legislature. And now the worst part? Most certainly Ben's situation...our family's livelihood is not the worst case of neglect within our state nor most likely in our own community!
I do not write this to invite sympathy for our family. In fact this is not a plea for help personally. It is what it is. This "game" of chance has extracted a physical and emotional toll from all of us. And we are some of the lucky ones. Though it sometimes hangs by a thread our marriage is intact. If you are not familiar with the statistics, the last I checked the divorce rate of couples parenting a special needs child was over 80 percent. Should those parents lose that child the rate increases.
Despite Jessie's obvious maturity in comparison to other kids her age, there seems to be no negative emotional effects from having an exceptional brother. In many cases a sibling (or siblings) of a special child will need psychological counseling at some point before their adult years. The only down side that we know of is that our daughter is fully aware of the financial burden and somewhat aware of the emotional strain from caring for her brother.
Have I frightened you away yet? Are you still reading? Honest to God my intentions are not to impart guilt nor remorse. Of all the things we could accomplish by writing about our lives with Ben, awareness would top the list. And with awareness comes creativity, thought, and hopefully positive change. There is a higher purpose for writing what I did today but you must come back tomorrow to find out what it is. As you saw in the title, I have an idea....