Is It Blame, Or Is It Beauty?
written by Jessica Patay
There are ripple effects happening at all times in our journeys as Special Needs Moms. Our lives have been dramatically and exquisitely altered…I don’t know about you but sometimes I think:
Because of Ryan…I talk about food, food, and more food.
Because of Ryan…my refrigerator and my cabinets all have locks on them.
Because of Ryan…I follow a meal schedule, a supplement schedule, and a medication schedule for him.
Because of Ryan…I avoid restaurants and parties; and I must tone down any food-related holiday—which is every holiday, by the way.
Because of Ryan…I have a blue handicapped placard in my car. That I use at Target, with or without him, I confess. There have to be some perks to this journey.
Because of Ryan… I have to hide many things from him, like if his brother or sister ate out, if there are any upcoming events or plans.
Because of Ryan…I walk on eggshells, doing a fancy dance daily in an attempt to prevent triggers and tantrums.
Because of Ryan…I have taught my other kids to lie, lie and lie. “If Ryan asks where we were, don’t say we got Yummy Yogurt, say we ran errands. And hurry up and finish that before we get home dangit!”
Because of Ryan…I splinter apart the family, trying desperately to give my neuro-typical “NORMAL” other kids the attention they so desperately need and want and deserve.
Because of Ryan…I am not always the jovial, light-hearted, SUPER-FUN mom I thought I would be.
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I’m SO SICK and TIRED of saying “because of Ryan I do this, we do this, I can’t do that, or we don’t do_(?)__ fill in the blank with a million things.
But is this really RYAN’S FAULT? Is it?
Or is it the fault of Prader-Willi syndrome, a rare disease, that took up residence in his genes 15 years ago?
This crazy, genetic disorder laid claim to Ryan’s brain and body and eating and behavior and anxiety and perspective and functioning and motor skills and speech and social abilities.
And it laid claim to my family’s life, too.
It’s not really Ryan, it’s Prader-Willi syndrome.
When the madness stops for a brief moment, I hear the whispers of my soul:
Because of Ryan…I have been given the gift of shifted priorities. That all that really matters in life is faith, family, and friends.
Because of Ryan…I have grown in tenacity, endurance, and perseverance. I run emotional marathons every month.
Because of Ryan…I have mastered the art of answering 29 questions in 10 minutes while driving down the freeway, and not losing my cool.
Because of Ryan…I have learned what crisis feels like and I have tremendous empathy for others going through crises.
Because of Ryan…I am recovering from the prison of perfectionism and all its false claims and nasty “shoulds.”
Because of Ryan…I have watched my husband rise up in super-human patience and love and support.
Because of Ryan…I have witnessed a maturity and responsibility in Luke and Kate as they cheer their brother on, AND, those times when they talk him down off the ledge of his horrible meltdowns.
Because of Ryan…my life is deeper and richer and filled with goodness-moments and sweetness-moments I never would have noticed nor appreciated. Like Ryan’s daily morning hugs with me. Or when he is genuinely grateful for new socks or spiral notebooks as if they were the best Christmas presents he ever received in his life. Or when he asks about a friend or family member recovering from surgery and reminds me to pray for them.
Because of Ryan…I struggle, I yell, I cuss, I cry and I grieve, and yet simultaneously, I am filled with more gratitude for this one wild and precious life that I was given.
AND----Because of Ryan…I have met the most amazing, kick-ass, brave, warrior-mamas that I call my friends.
Because of Ryan, We Are Brave Together was born.