That phrase, commonly found on the back of shampoo bottles, pretty much sums up our lives with Ian. I'm not sure how much new information I can convey on this blog---each day flows into the next with only minor variations on a common theme: How do we make it through another day with the fewest meltdowns, the happiest possible Ian, and the least stressed out parents. Some days are more gracefully lived than others. Some days I want to shout "I've had it! That's it! Someone else take up the mantle of parent-of-severely-autistic-child from now on!" I'm not particularly proud of these moments, but I acknowledge that I am human and not near being the saint I wish I were--so I have these moments. But as a very dear friend pointed out once to me---I consistently "show up." I'm here. I love him. Even when he is pulling my hair. Even when he screams so loud my ears ring. Even when he lies thrashing in our bed distressed beyond imagining by something we can't even guess at. Even when we have to wrap him up in a blanket and sit on him to try to chase away these anonymous fears. Yes, even when he poops and smears it all over his room. I love him.
So---another day passes with "the bug", and the grace of God whose love "passeth all understanding" keeps me going. And the love of friends and family, and by the extreme good fortune of having the help of a wonderful caregiver and her family (thank you, thank you, Kandace!) Here's hoping the state continues to acknowledge our need for help. It really
does take a village to raise Ian.
It's been 14, almost 15 years since diagnosis. God give us the strength to keep "showing up."
The picture above was taken several years ago---here are a few more for your perusal:
Another picture from several years ago--he is with his sister and Dad lurks in the background.
When he had hair!
When he was going through a particularly bad phase of pinching himself and pulling out his hair. Now he always has a Marine haircut to prevent the pulling. The pinching has actually been better lately---thank goodness!
Showing up really is the work of parenting. It's always the case. You throw a big laser bright light on this, though because to stay present (& safe & with any humor left in you) requires major work.
ReplyDeleteI think as you keep saying your truth, new things come through.