This has been reposted from another place I write. Worth re-posting.
Whenever Ryan has a horrific tantrum, especially in public, I feel a sick wave inside. Internally and immediately, I ask myself,
“What will this look like when he’s 13? 18? 28?”
I feel panic and fear. All the while, I’m utilizing my tantrum-reaction strategies and trying to appear calm and cool. When the tantrum is over, Ryan moves on but yet I am reeling inside. I’m left with the “oh-my-gosh-HOW-will-I-handle-this-when-he’s-older-bigger-louder-stronger” questions.
Why do I put myself on this futuristic rollercoaster? Whenever that “wave” hits, I fast-forward and start projecting how HARD it will be. I automatically assume it’s going to become intensely challenging as the years go on in Ryan’s journey with Prader-Willi syndrome. It is certainly not going to get easier. None of the symptoms or behaviors goes away as children age. They don’t “grow out” of any of it. (Darn…Too bad there isn’t a special needs fairy that grants every family one wish to remove one aspect of their child’s disability.) My perception of my future with PWS is its scary, intense, stressful, and possibly unmanageable. As I write this, even my adrenals are firing and my heart is racing like I just ate a handful of espresso beans!
As I was sharing, (ok, really venting and complaining), with a true-blue girlfriend about my current wave, she short-circuited me with a question.
Friend: Jess, what is in your hula-hoop?
Friend: What can you hold in a hula-hoop?
So I then walked outside to pick up my daughter Kate’s silver sparkly hula-hoop. I put it around my waist. Literally. Its 27 inches in diameter. And with me inside of it, it does not leave much room.
The message my girlfriend was trying to get into my fearful, worry-wart head was that I need to focus on today, this week, or at best, just this moment. All I have permission to think, feel, and worry about is what I can fit into my hula-hoop. THAT’S IT AND NO MORE.
A huge struggle in special needs parenthood-dom is to let our hopes for our children outweigh our worries and our fears. The future will be the future. I cannot control it or change it or make it infinitely better by freaking out now. I am only doing my marriage, my family, and myself a giant disservice by ruminating about what life will look like when Ryan becomes a teenager or adult.
Now where’s that hula-hoop?
Picture from troubadourshow.com