Some days feel heavy. Some days feel exhausting. Some days I feel as though I am trapped and spinning out of control in a massive hurricane that is relentless and showing no signs of slowing down.
These are the days when a sudden change in routine will upgrade the hurricane from a category one to a category five in less than five seconds.
These are the days when I’m trying desperately to grasp my son and pull him from of the eye of the storm. Sometimes I get lucky and I’m holding him tight enough to pull him back to calmer ground. Other times I’m not so lucky, so I wrap myself around him trying to protect him as much as I can.
On these days we are both crying and exhausted but I suspect my exhaustion is nothing compared to his.
On these days I look at my child and wish I could make it all better for him.
I’d like to tell you how hard this is for him, all of it, especially the change in routine. After so many years, it’s still very hard.
I’d like to tell you that over the years it got better, it did and at the same time, it didn’t.
I’d like to tell you how change is difficult for many people living with autism, as it is for Emilio.
So if you hear my son shouting at the top of his lungs things like “because it’s too expensive”, “no time”, “not fast enough”, “too slow”, these are his buoys keeping him afloat in the storm.
Without them, I don’t know how he would manage or how I would be able to help him.
From the outside looking in, one would think none of his words make any sense. Shouting sporadic phrases into the air without logic behind them is well…odd. But they make sense to him and at the end of the day, that’s all that I care about because if this is what he needs to keep his head above water, so be it.
But I’d also like to tell you about the other moments, the beautiful moments that breathe faith and hope back into my lungs.
The brief moments during the storm when my son can articulate why he is upset.
The moments when his words shine so bright, they touch the deepest part of my soul and I’m holding on to every word like a precious diamond found in the darkest, cavernous mines.
My diamond, shining bright.
These are the moments when my son can say things like “I wasn’t prepared for the change” or “I need more time”, “It’s too fast”.
His words give me the opportunity to adjust my sails and help him further.
If only you can see how huge this is for him.
If only you can see how this triumph is equally wrapped with challenges.
If only you can see his struggle when I tell him one Sunday morning that we’re out of bagels but he can have an English muffin instead.
This is hard for him because it’s Sunday and on Sundays it’s half a bagel with a banana, not half an English muffin with a banana.
The storm is coming, I feel it.
Why didn’t I prepare myself? Why didn’t I check earlier if I had bagels? Had I checked I would have seen we were out and I would have had the time to pick some up on Saturday.
Instead, I’m in the kitchen thinking how I’m going to prepare him for this and how I’m going to prepare myself to handle it all.
But once in a while we find a diamond….
Like on this Sunday morning when he tells me it’s okay, he’ll have an English muffin but, can we please go to the store and pick up some bagels after breakfast?
My diamond. My beautiful precious diamond.
So when the storm comes and it picks up speed, I’m hopeful that I will be blessed to find another diamond.
What are your stories of finding a diamond when you least expect it? These are incredible moments that we will treasure forever.
Thanks for stopping by…