We now have a door on the kitchen. My daughter is 5 and a half. I thought it would be later, when she was older, but the time is here.
I am thankful that the door has worked as a barrier not only to food on the counter or just barely empty cinnamon bottles, but also to a seemingly uncontrollable sneaking of food.
I've read the brochures, the articles on the National PWS site, posts on the PWS FB page, listened to doctors...all of it. But still you cling onto the hope that your child will be different. And I still have hope that she will be. Each PWS phase she reaches I think, "Well, ok, she won't go through the next one, not so bad anyway. She's on the less affected end of the spectrum."
And really she is. I am grateful for that. Freya never had a feeding tube, and while she didn't walk until after reaching 2 years old, she can now run and jump, not like her peers mind you, but she can, and does, and delights in all of her movements. Her articulation is not the clearest and it is often a struggle to understand her, but she speaks in sentences and can usually make herself understood. If not, she has a little sister who comes to her rescue. She knows letters, numbers, shapes...all of the basics a kid her age should know. She loves stories, dance parties and seeing friends.
But here is the thing, as grateful as I am that she can do all of these things, it does not mask the other characteristics, not to me.
The day we decided it was time for the kitchen door began with a red faced Freya having found an "empty" cinnamon bottle (Cosco size no less) in the recycling, getting a spoon and scraping out what she could. All while we were blissfully asleep. A little later, after having left the kitchen for just a few minutes, I came back to find that she had taken a pair of scissors to the bag of steel cut oats. The slumped shoulders of shame accentuated the look of almost disbelief on her face, as if she had just not been able to stop herself, though she knew she should. This seemed different, and far more alarming, than the few mornings before when she had eaten 4 bananas before we woke up. I thought putting the fruit up high would be enough.
She cries for food sometimes, heartbreakingly so, even when I know she should not be hungry. I come to pick her up from her class and, even if she is in the middle of an art project or a pirouette, the first thing she asks is if I got her a snack. And won't stop asking until I tell her when she will eat again.
There are times now when she just seems sad, without explanation. At these times all I can do is hold her and rub her back, telling her how much I love her, while tears stream down her face. My daughter is different, and I think she knows this.
When we are in public and see someone in a wheel chair or walking with a cane, or someone with oxygen strapped to their nose...anything that makes them stand out to a 5 year old that always asks "what's that" and "why?", I take that opportunity to explain how everyone's body is different and some need extra help. I now mention to her that her belly and brain will tell her she is hungry when she is not, and that she should not listen.
How do you explain to your child to not listen to something as instinctual as hunger?
Even as I write this I am remembering something I read years ago when we were first learning about this disorder. The disadvantage of people on the less affected end of the spectrum is that they 'know' they have this disorder. Depression is a common, and probably logical, reaction.
When I began this blog in the weeks after her diagnosis, it was to be a place to process the emotions of having a special needs child. Also, it was to be a chance for my friends to read about my child and her diagnosis so they could know what was going on with us without me having to discuss the not so uplifting details at BBQ's and family dinners.
I mentioned to some friends recently the posts I had read on FB, the numerous laments of people having lost most of their friends as their child grew, the challenges being too much. Now, I have amazing friends, friends who have always been supportive and loving, and of course they assured me that it would never happen to us. And I believe them. That is how I am made, to have hope. But a small part of me wonders in trepidation about our future; my family's, Freya's.
See, I've done the research and listened to countless PWS stories. I know what we are up against.