I just finished reading the book House Rules by Jodi Picoult. And even though Kiran doesn’t have Asperger’s – or autism at all – when I read this paragraph, I think I might have actually gasped:
“This is what you can’t explain to a mother who doesn’t have an autistic child: Of course I love my son. Or course I would never want a life without him. But that doesn’t mean that I am not exhausted every minute of the day. That I don’t worry about his future, and my lack of one. That sometimes, before I can catch myself, I imagine what my life would have been like if Jacob did not have Asperger’s. That – like Atlas – I think just for once it would be nice to have someone else bear the weight of my family’s world on his shoulders, instead of me.”
It’s like a summary of what I am always trying to write about. This is what I am trying to help everyone understand. It’s why I keep coming back to this blog, to write and write and write some more. Letting the thoughts and emotions out of my body and onto this screen helps lessen that load, just a little bit.
When I have a particularly demanding week – or I’m sick and have to also think about my own needs in addition to Kiran’s (I am still not great at doing that unless it’s put in my face, like with illness) – I often wonder how much longer I can do this. And I always feel guilty – and silly – even writing about the exhaustion. It always seems like the weeks I just want to coast – I just NEED to coast – are the weeks I have to fill out disability reports; and Iowa City calls to reschedule an appointment already on the calendar so I have to call them back (remember how I hate all the phone calls); and we decide to take Kiran into the walk-in clinic because we are finally wondering if his eye discharge has been going on too long that it might be something more serious (it’s not); and I have to call the medical supplies place three times just to (maybe) get our first diaper delivery (I’ll let you know, after I call the third time tomorrow); and his private therapists all have days off so two weeks in a row, we go to Childserve three times per week instead of two; and the child life specialist in town needs a callback to get more info on Kiran’s medical history so she can explain to the kids in his preschool class all about the cares they see happening daily; and our healthcare providers need to meet for his annual levels of care assessment; and I just wanted to coast to Christmas.
But I continue to put warm compresses on his eyes, after thoroughly washing the cold germs off my hands, and I put gloves on before I do the tear duct massage. Because it’s working. The eye gunk is clearing out.
And the rest of it, too. I’ll make the three phone calls I have to make tomorrow; we will attend every therapy and assessment appointment we have every afternoon this week (save Friday, thank God for a free afternoon!).
And I will keep wondering how long I can do it, given the exhaustion. I will be thankful every time the helping hands show up, but ultimately, I feel the weight of it all falls back to mama’s shoulders. And even three years in, with so many experiences I never dreamed I’d have under my belt, I do not feel equipped for this job.