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.”
The itch gets stronger.
The impulse to scratch increases.
I am compelled.
I can’t take it!!
I must 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.
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.
All the time.
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.
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.