So, I've been waking every morning with a vague sense of dread, and it's not the usual will Sophie have a lot of seizures today? Will Sophie be alive this morning? Will Oliver be in a good mood or bite my head off? Will Henry make it through high school without sex, drugs and rock and roll? or Will I make it at all, today? Yes, that's the usual, a million worrisome thoughts that generally disappear by the time my eyelids are fully raised and my cheery morning self slips into my body. Lately, though my dread has continued on into the morning, and that's because I'm looking for a job. The work that I've been doing for many years has come to an end -- no more federal dollars for the projects that I've participated in, and the non-profit I am currently under contract with has little to no steady work. The problem with getting just any job is that I have very little flexibility and need flexibility. I have to be ready to deal with Sophie if she has a bad day and can't go to school. I have to make at least $20 an hour to break even and pay for childcare for her to begin with, and then there's Oliver who is at a time in his life where he needs me to be with him, particularly after school. Given the amount of stress in our home -- some of it bloggable and some of it not -- and the ongoing struggles that siblings of the disabled face, I feel that it's paramount that I am readily available for my boys. While I'm perfectly aware that we're fortunate to have one decent income and have had some help from my parents and my up to now steady part time work, I'm also perfectly aware of what I might have earned, might have contributed, might have been doing if my first baby hadn't developed this devastating disorder and been so disabled by it. Let's face it: I'm the CEO of Sophie, Inc., and it's a volunteer position that has reaped many, many rewards but it has also made it extremely difficult to do anything else.
Better minds have grappled with this and are better able to articulate it, and one of these is my friend, the writer Jeneva Stone. Here's an excerpt of her most recent thoughts with a link following to the complete post.
This bit of data changed my self-narrative. I had been grateful and continue to be grateful for the medical assistance Robert receives and the nursing care for which we're now eligible. But had these supports been available sooner, I might have been able to earn more money, pay more taxes, spend more and stimulate the economy, participate at my child's school, and otherwise enrich my community.
Instead, I had been cowering and avoiding reading the comment threads that follow news stories about children with disabilities--comments that blather on about families and choices, children who are burdens to society, people who don't want to pay for the needs of disabled children because their parents chose to have them and foist them on the rest of us, people who are concerned about their tax dollars being wasted. How to respond to this? Whine about paying for the incarceration of children some of you out there abandoned and/or failed to parent properly, or your ER costs because you won't pay for health insurance? Hmmm.
But now I know that by being a responsible parent, I saved taxpayers $7 million dollars at tremendous cost to my family's financial well being. I feel good about that. I've made a real contribution to society, even if unrecognized. Now, please, stop talking trash about me, my kid and my family.
Jeneva Stone, from Busily Seeking 2.0: The Costs of Caregiving
Read the rest of it, here.
Reader, if you are the primary caregiver of a disabled child or children, how do you balance work (the paying kind) with your duties (the non-paying kind) and if you don't balance them, what does it look like? If you are not the primary caregiver but, rather, an innocent bystander, I'm interested to know what you think about this dilemma.