When is it the right time?
At what age? At what cognitive level?
Will he even understand?
Will it make him more anxious? (Because EVERYTHING does.)
Will he just perseverate on it and talk about it over and over and over?
Or will it bring relief—as in “oh, now I understand why I talk about food all the time…”
It was a Friday night in November. Luke, our oldest, was celebrating his 16th birthday with friends at our house, running amuck with food and video games and endless teenage energy.
Ryan wanted to know again and again WHEN IS DESSERT TIME? Of course. No one else cared or asked. Because they just filled up their bellies with pizza.
He followed us into our bedroom, pelting us with repeated questions about Luke’s birthday dessert. Ryan is 13, let me remind you. This is not normal behavior, unless you have PWS, or you are age 2 or 3 or 4 maybe.
We told him 7 or 7:30 pm, whatever LUKE CHOSE, because it was Luke’s birthday. Now, uncertainty is very hard for kids like Ryan. Uncertainty about the timing of a meal or snack, or bless-ED dessert, well that is just too much to bear. Yet, it was LUKE’S birthday and Luke’s choice. Ryan was not going to control it.
Ryan wanted to run out to the family room to badger Luke with the WHEN of it all. But he was already worked up, talking in a shrieking, whiny voice. We wanted to protect Luke (from embarrassment among his peers), so we kept Ry from leaving our bedroom. Anytime you do that, aggression is a risk. Ryan started hitting Chris and we had to restrain him when talking him down wouldn’t work. (Doesn’t usually work when he is that upset.)
Ryan was getting louder and louder, unfortunately. He kept saying he wanted Luke to restrain him, and not us. Whomever is not doing the restraining, is the “good guy,” and Ryan will request that person. Because Luke’s friends were nearby, we still tried to de-escalate the situation, but really we needed to be silent and wait the storm out. Poor Luke walked in with a concerned look on his face, saying, “What is happening in here?” We told him, apologized this was happening amidst his birthday party, and encouraged him to go back to his crew. He sighed and left.
Ryan was not quite calm, but I tried getting him out of feeling-mode and into thinking-mode. It was my turn to pelt him (lovingly…) with questions.
“Ryan, do you want to know why you are so upset?”
“Ryan, do you want to know why you are having a hard time waiting for dessert?”
“Ryan, do you want to know why you ask about food all the time?”
“Ryan, do you want to understand what is causing all this?”
“Ryan, do you want to know why your body and brain are different? Why we tell you that all the time?”
“Ok,” he whispered. It worked!! This seemed to short-circuit the tantrum. We released our physical hold on him.
“Ryan, you were diagnosed as a baby with something called Prader-Willi syndrome. You were 5 weeks old and out of the hospital when we found out from Dr. Flores. He called us to tell us. Prader-Willi syndrome is a rare disease. Not many kids and adults have it.”
He was looking so sad and exhausted (from the tantrum, mostly), and he looks at me with snot and tears and says, “Why do babies get diseases?”
CRASH went my heart. All of our hearts.
“We don’t know, Ryan. Some babies are born with different illnesses and we don’t always know why. But we do know that we will always take care of you. Always.”
Chris chimed in, “This is why you talk about food all the time and need constant reminders that we will feed you. We will always feed you your meals and snacks, we will never forget. Your body doesn’t tell you that you have had food or that you are full after a meal. This is why we have locks on the refrigerator and cabinets now. Otherwise you may eat too much and get sick or have an emergency. Do you think you talk about food more than anyone in our family?”
“No.” Ryan really has no insight or self-awareness. He thinks Luke and Kate talk/ask/freak out about food just as much as him. Or–he just answered that way because he wants to pretend it’s not real.
Sometimes I want to pretend this is not real.
At this point, we had long stopped restraining him. We made a Ryan sandwich sitting on the floor against our big bed. Snuggled together. Us holding his floppy little hands.
I asked Ryan if he needed a hug.
Those big, watery, blue eyes met mine. “Yes, please.”
****
Since that night, Ryan has not mentioned Prader-Willi syndrome. NOT ONCE.
We have brought it up to him, to help him understand when he is having very anxious moments, or needing food security.
It may be sinking in. Light bulbs may be going off in his sweet head. It may provide some relief to know WHY we have said for years that his brain and body are different. Maybe it frames things for him. Maybe.
I know it won’t change his behavior or his food-seeking. He won’t suddenly be able to self-regulate or make himself un-anxious.
And yet, still, he grew up a bit that night of November 11, 2016. We all did.
Jean says
Wow…. there sure is a reason that you were chosen to be his mom in this crazy thing called life. You are such a special person…. and ryan is so blessed to have you!❤️ Thank you for sharing. ❤️
Julie Dripps says
I think Ryan was about 3 when I met you, and my daughter, Victoria, was a baby. I can’t remember specifically the first conversation, but whenever we do talk about PWS, Victoria seems to have a confidence or bravery or understanding that she’s not alone in having PWS. There are others with her same struggles. This also helps me deal with the daily anxiety of life. Thank you so much for you honesty and sharing you stories. You are such a blessing and encouragement to me.
Jocelyn says
Jess, I’m sitting in a cafe on my lunch break reading this and tears are rolling down my face. You are such an extraordinary mother, and truly, you make it look so easy, when truly, it’s not. I marvel at your strength and grace. And as you know, I love that kid! Love you!
Jennifer Sharples says
Oh do I love that boy! Many tears shed for him and you all in your strength! Love, Jenna
Jana says
Those big, watery, blue eyes and his sweet soul … always what I think of when you write about Ryan. Thank you for sharing. Love to you my patient, wise, beautiful, kind friend. XO
Mary Kisaka says
Well done, and well-said. There is no script, and there are no easy answers. But you handled it so well.
kimberly kooy says
So wonderful, Jessica. So beautifully written. Thanks for giving us all a glimpse into life with sweet Ryan.
Mikey Lango says
Oh, my gosh, I am crying. This brings back so many memories of Alex the grandson that we lost in November 2012. He so wanted to be like other kids and not have Prader-Willi.
jessica.patay@gmail.com says
Dear Mikey,
I’m so sorry you lost your grandson a few years ago. It is something I fear with Ryan all the time. Thank you for reaching out and sharing. Im thankful for the community of PWS friends and families to walk through this with. Hugs to you.
Lora says
In sharing with him, ultimately, you are empowering him. And in empowering him you are loving him in a completely new way. A way you all need. So beautiful. As always. Feel as though I were there in the room with you. You continue to inspire through your love every single day.
jessica.patay@gmail.com says
Sharing–>Empowering–>Loving Him. Thank you. You said that so eloquently my friend. XO
Della wirtz says
Wow. Tears😥. I have often wondered if you had ever told Ryan. Hugs . Xoxo💙
jessica.patay@gmail.com says
Friends have asked me if Ryan knew, and not until now. Thank you Della for your sweetness to me, to Ryan, every time we bump into you in the parking lot. XO
Lisa says
Knowing when and how to tell your child of their diagnosis (label) is such a difficult decision. You and Chris handled it with grace and seemed to find the right time for Ryan. Always sending prayers to you.
jessica.patay@gmail.com says
Thank you. It happened so organically which is sometimes better than planning it all out. Grace is with us each step of the way. Your prayers mean so much!
Cynthia MacPhee says
Life is so challenging! You and your family are heroically tackling one day at a time. Kudos and love to you.
jessica.patay@gmail.com says
You know how challenging it is! Love right back to you!
Gabrielle says
Wow Jess, you have such an amazing gift , allowing us to feel a little tiny bit of what you and your wonderful family are going through, if only for a min I felt the love, pain, roller coaster of emotions and dedication your family has for Ryan . He’s such a sweetheart I’ll never forget the first time I met him and he was asking me a barrage of questions about the style of clothing I was selecting at your cabi party. I love his ❤️
jessica.patay@gmail.com says
He does have a SWEET way of leaving his impression on others. Im glad he did with you! xo
Gabrielle says
Wow Jess, you have such an amazing gift , allowing us to feel a little tiny bit of what you and your wonderful family are going through, if only for a min I felt the love, pain, roller coaster of emotions and dedication your family has for Ryan . He’s such a sweetheart I’ll never forget the first time I met him and he was asking me a barrage of questions about the style of clothing I was selecting at your cabi party. I love his ❤️
James Klein says
What a wonderful, moving post. Thank you as always for sharing.
jessica.patay@gmail.com says
I MUST share. It’s what I am called to do. (Plus it is very cathartic. 😉 )Thank you James!
Liz says
So very well said Jess – my heart breaks for all our special kids and that they have to understand these WHYs. Xoxo
jessica.patay@gmail.com says
Oh the darn WHY’S!!!!!! SO hard to explain and understand as adults. I appreciate your never-ending encouragement to my writing Miss Liz. XO
Malena says
Beautiful.
jessica.patay@gmail.com says
Awwww much appreciated Malena! Thx for reading my blog my heart!
Sara Dwyer says
Jessica – you write beautifully and from the heart, with words that resonate with any parent with a child of special needs. I am so proud and blessed that we are – in our own ways – making a journey that is makes each day – a surprise, a challenge, an experience, and a lesson. Thank you for sharing and teaching us all-
Sara
jessica.patay@gmail.com says
Sara, so grateful for your words. Each day IS a surprise, a challenge, an experience, and a lesson! Truth!
Debby says
Powerful.
“Sometimes I want to pretend this is not real.”
Bulls eye on the parenting heart, Jessica.
Thank you.
jessica.patay@gmail.com says
In all madness moments as parents we feel this way! Tell me this is not real?! Thank you Debby for reading and commenting!
susie campbell says
Oh my goodness – thank you for sharing such a big moment. I can feel it. Hugs pretty lady.
jessica.patay@gmail.com says
Susie! Such a big moment I will never forget. And I will never forget that time at the soccer field and Ryan’s (overly) concerned questions about your hurt toe. You were so patient and sweet to him. xo
Violette Beshay says
You create vivid imagery through your writing. With tears in my eyes, I felt I was right there with you…living through the entire process of restraining Ry long enough to explain. You do look like the perfect family with the matching outfits and picturesque smiles.
jessica.patay@gmail.com says
Don’t be fooled by the pretty pix! Its crazy-town over here sometimes! Thanks for reading Violette and feeling it with me.
Pooka Lewis says
Great blog Jess! Ryan is so fortunate to have such thoughtful, loving, informed parents! Sending prayers your way for those moments when overwhelmed seems bigger than thoughtful, loving or informed.
jessica.patay@gmail.com says
I will take and appreciate every single prayer Pooka! Thank you!
Suzie says
In tears reading your ache and courage. You are doing well and loving well my friend.
jessica.patay@gmail.com says
Suzie!! You have ALWAYS been soon supportive and encouraging to me, to my openness, and to my ache. Love u friend.