I've been spending my night hours working on my pile of mail, housework, decluttering and sitting nearly comatose, trying desperately to figure out how to do all that NEEDS to be done, by myself.
I've been spending my day time hours preparing meals, driving to therapy appointments and medical appointments, taking 6 hour round trip medical trips, homeschooling, doing more housework and more paperwork, feeding, bathing, changing, dressing kids, combing their hair, cutting their hair, and the list goes on and on and on.
In between all of this are very few stolen moments of taking a bike ride (a major undertaking), going to the park (have to drive to get to one), bowling now and then, perhaps a movie every couple of months, and not much else. I try to have fun, but the stress builds as the hours tick by and I think of all that's not getting done that is so important.
I don't have time to be mom to my kids. Some might argue that doing all of the above IS being a mom, but I'm not getting in those down-time moments of plain and simple enjoyment with my children and I miss it terribly. I know my kids miss it. I even wonder if my older two kids know about it or if it's just a meaningless distant memory of their first months home before the move and the diagnoses and all the things that we now deal with because of their multiple and many special needs.
I have hope that things will eventually settle down, but each time this seems to be on the horizon, another program or agency sends a boatload of paperwork my way with impossible deadlines to meet that correspond with deadlines from another agency. If I don't meet these deadlines, my kids are dropped from services and programs they, that WE all, desperately need, but doing all that is required to keep them in these programs is keeping me away from them by taking up all of my time.
I don't know how I'm going to do it all. How many moms have said this and had another older, wiser, more experienced mom say, "Welcome to motherhood. You'll never get it all done." And these were moms with neuro-typical kids. Well, they didn't HAVE to get it all done. But I do, because if it doesn't get done it really matters and the consequences are dire.