I've spent the last few weeks trying to juggle work issues, plan for back-to-school and tackle the unending list of activities, fundraising, and meetings required of me as the parent of two active high-school students. During this time, J. has also been ill, necessitating numerous phone calls and visits to the doctors. And while I'm busy doing a lot of things, I don’t feel like I'm doing any of them well.
The question I continue to ask myself daily is: Am I using J.'s disabilities and medical issues as an excuse to "get out" of time commitments, or is the fact of her issues a real reason why I can't commit to things the way other parents might? I don't know the answer to this, and I suspect it's a bit of a gray area on any given day. When the theater production needs parents to build sets for the play, and I say, "Sorry, I can't, it's J's treatment day", that feels like a reason, not an excuse. But when the youth group needs another mom to chair the fundraising committee and I say, "J's been sick lately, and I'm not sure I have the time,"…well, that feels a bit more like an excuse. And when I look around me at the moms of children with special needs who are lawyers, and doctors, and those moms who speak to their Senators, campaign for change, and travel to Washington to make sure legislation relevant to our kids' gets attention, I feel like I'll simply never measure up. I sit and wonder how it is I could carve out more time for these important activities, yet just the thought of adding anything more to my plate exhausts me. But somehow all these other moms manage it…so why can't I?
At the heart of it is my fundamental belief that nothing I do will matter as much as spending time with my kids, and that J's needs are significant enough to warrant my full attention and dedication. There's also the secret worry that my time with J. is limited, and I fear regretting moments spent away from her. But is that perception real, or just the product of a decade spent in and out of hospitals and clinics? There are days when I feel the full impact of J's many diagnoses and disabilities…and days when I think that her issues pale in comparison to the many other children with special needs I know. Some days, I feel consumed by the level of time and energy it takes to manage her care, and on those days adding one more thing – however "normal" it might be – is beyond me. There are other days, though – days when we are swimming in the pool, or playing games at home – that I think just how very normal our lives are, and on those days, it would seem simple to take on a bit of extra work.
So perhaps the answer is that there is no answer. Some days, I have a good reason…and some days, I'm just making an excuse.
