Every morning THE VERY FIRST THING Ryan says to me is,
“WHEN can I have my breakfast?”
He’s been doing this for about a year or so.
Very Prader-Willi-ish of him.
At some point in childhood, in PWS, at age 2, 3, 4, or later, kids begin to have an obsession with food. Their brain-wiring causes them to focus, focus, focus on food. In addition to that, they have no satiety signals. Add to that, they have low metabolism, and therefore calories and diet must be strictly monitored.
Preoccupied with food all the time.
ALL. THE. FREAKING. TIME.
The poor child.
These poor children and adults hang their life by their next meal or snack. Truly.
This is Prader-Willi syndrome.
I have been itching.
I don’t mean a mental restlessness. I mean literally itchiness of my skin. All over. Scalp to ankles. The itch goes deep.
A typical moment these past 4 months:
I feel that itch. (on my leg, lets say.)
I try to ignore it.
I keep my jeans pulled down over my leg, as a wall of protection.
“Don’t lift it, don’t go there, “ I tell myself.
The itch gets stronger.
I give in. Damn it.
I lift up my jeans to my knee to expose my lower leg.
I scratch a little.
“That will help, I say to myself, “that will make it go away.”
It doesn’t.
The itch gets stronger.
The impulse to scratch increases.
I am compelled.
I can’t take it!!
I must scratch!!
I scratch.
And scratch.
My face wincing and all twisted up. If I can just get deep enough, it will go away. (I hope.)
BUT IT DOESN’T.
It’s insatiable.
The only thing that stops me is breaking skin and and bleeding and seeing my skin so inflamed and pink.
I grab ice packs. And sit.
With stinging calf and shin bone, I sit.
It is over.
Till the next moment.
Which is not far off.
This is what it must feel like to have PWS.
Hungry.
Hungry.
Hungry.
All the time.
The feeling.
The wanting.
The thinking about food.
Children and adults with the syndrome must often think,
“If I just get that cracker, cookie, apple, just sitting there, I will feel better.
I will be relieved.
It will go away.”
And then he or she takes the food item.
They keep eating and eating till they are sick to their stomach and in severe pain.
They are not relieved.
They are not satisfied.
They are not full.
They. Are. Never. Full.
Insatiable.
I am now on the tail end of my itching and hives issues. But for the past 4 months, I was preoccupied with itchy skin and scalp. I felt very twitchy, restless, and anxious. At its worst, a form of suffering. Moments that were tortuous. Nights that were sleepless.
It has given me pause, though.
I think of Ryan.
I think of Cameron, Gigi, Kai, Ryan C, Trevor, Samantha, Siena, Naomi, Desi, William, Vanessa, Blaise, Max, Joseph, Lily, Oscar, Averie, and all my friends’ children who suffer through hunger, anxiety, constant thoughts about food, and their food schedule.
Monster proportions of preoccupation with food.
And no matter how consistent we are, how incredibly committed to the guidelines and rules we know to follow, and WE ARE, AND WE DO–Ryan’s inability to TRUST his next meal or snack will be provided for–is powerful. Overwhelming.
What has been miserable for me in my itch-hives-syndrome, is NOT having relief. No lotion or medicine, oatmeal bath or coconut oil, or ANYTHING would comfort and relieve me from the itchiness.
NOTHING. Nothing comforting or soothing.
Is that how my Ryan feels?
That nothing ever, ever, ever relieves him from this wondering-wanting-seeking of food?
It breaks this mama’s heart. Once again.
Bailey turned 3 and BOOM! Wieght gain out of nowhere. Constantly dragging us to the refrigerator, picking out of the trash , sneaking and hiding food. I hate that she has to go through this
Katie is 39. She is so brave! She battles this urge to eat every moment of every day. My heart aches for her. She is my gift from God. She has taught me so much! I prayed for patience and God gave me Katie.
I try very hard to keep my daughter (36) busy all the time. She gets it too. She knows that she will feel better and be distracted if she’s doing some activity that makes her happy – – besides eating.
She loves exerci
se – thank heaven. It’s the best therapy for all of it. Swimming, biking, hula hooping and walking…. it reduces the anxiety over food, burns calories, keeps her metabolism moving (so she can go potty).
There may not be a cure in her lifetime – or maybe there will be – but we try awfully hard to keep her feeling good about herself and loved.
The other thing she enjoys is making things. All sorts of arts and crafts. All of it helps.
Thank you for explaining PWS in a way that I can share with our friends.
I hate that my daughter is always hungry. I hate PWS. Your words are powerful.
I often look at my Maddy and don’t know how she copes as well as she does, I don’t think I would do so well. I will use this analogy in the future, it works so well!
Beautiful Jes. Thank you for sharing your journey with us.
Tears…..nothing to say, the helplessness I feel because I have no answers for you or Ryan or for your pain……this gives me only a glimpse of your world and Ryan’s world. My heart bleeds with this small bit of information, and helplessness, because of your efforts to help me understand……
You have gifts. Ryan. Kate. Luke. Chris. And also the gift of writing. There’s so much learning going on, through your beautiful words. Thank you for the comfort of vulnerability to share so deep. Hopefully the itching has been explained and treated. Perhaps even gone now. My prayers include the Patays….for continued understanding and strength. ❤️
As always – powerful!
Not sure if you’ve ever heard me describe PWS to people, but I have often used a similar analogy – I have asked people to imagine that mosquito bite that is super itchy and that they “know” scratching won’t help, but the compulsion to scratch overpowers all logic – and then I tell them, that although I don’t know what it feels like to have PWS, I imagine it must be like this.
Those are my words as well. Incredibly powerful meaningful sad and truthful. My heart bleeds a little more reading this. But I still believe you guys are doing an amazing job and I love him regardless.
Beautifully written and oh so heartbreaking Xoxo