If there's anything mothers of children with PWS agree upon, it's that we all hate PWS. It's not just the food seeking, which is awful, gut-wrenching, and scary (empty boxes of cookies found in a closet, empty peanut shells in a house with no peanuts, eating non-food items like tin foil, food colouring, and dirt). It's also the surgeries and braces for scoliosis, surgeries and glasses for vision problems, braces to keep hips in check, orthotics to keep ankles in line, helmets to adjust skull shape. It's growth hormone deficiency, and every day injections. It's medications for reflux, for constipation. It's positioning devices and standing frames (which apparently Ellie is getting fitted for at our next pt session). It's silent pneumonia, undetected respiratory infections, oxygen saturation and breathing issues. It's on going poor muscle tone, balance issues, motor developmental delays. Speech delays, learning delays, growth issues. It's seemingly endless appointments with therapists, doctors, respirologists.
PWS is so very many things, it is overwhelming.
Someone said that we're lucky, that we've had an easy road so far. Part of me, the optimistic part, says "We sure are!! Look at everything Ellie can do!", and then the realistic part of me says "hold the phone... lucky?" Lucky to have had serious breathing issues, months of lack of oxygen, serious growth restriction, substantial developmental delays, months and months of living in hospitals? Is that really lucky? Sure, Ellie is healthy, ish. She's not allowed around other kids, her brother can't have play dates. We can't eat around her, otherwise she cries and cries. She has progressed so far in just a few months, but she's still far behind.
We are lucky that we have a diagnosis, because we can go forward knowing what might come. Then again, we live in fear of what might come, and who knows, those fears might never materialize. We know that she is already hungry. She wants food all.the.time. She has eagle eyes, and can spot a snack across the road. She fixates. She's still a baby. She can't verbalize. She doesn't have to say a thing to get her point across. At least we`re not waiting for the hunger to start, we don`t have a honeymoon phase, we don`t get to experience some time of "normal". That sucks, but we try to find the positives.
I dutifully measure out all her (four) bottles, every morning, making sure not to put even a smidgen more powder into a bottle than she is "allowed". I pre-measure her one solid meal of the day, hoping that she will like it, hoping that the textures won't freak her out to the point of my having to make something else. Making something else is the worst, because she can see there is more food. She's a smart one, this little monkey.
Someone mentioned that something like 70% of people with PWS are walking around undiagnosed. I sometimes wish that were the case for us, because those cases are likely milder than the people who receive their diagnoses early. Maybe not always, but maybe. Another PWS mama pointed out that there are 10 subtypes of PWS. That explains why some kids resemble each other, and not others, it's very interesting, actually.
There's one thing I am sure of, positive of, and no one can tell me otherwise, is that Ellie will never get fat. I refuse to accept it as a possibility.
I wrote a post, and deleted it, because of negative feedback. I've decided, this is my blog. I write because it's my therapy, I am fully entitled to my opinion within the space of these posts. If you don't like what I write, all you have to do is click Ctrl+x. That part is easy. Word of warning, you might not like what I have to say in the following paragraphs.
I know Ellie won't get fat, because I won't let her. She might get a wee bit chubby, but she will never enter into the range of "obesity". It's not going to happen. I can control a lot, I can control what comes into our house, for instance. I have a personal issue with junk food, I love it. I love it so much that I have no self-control whatsoever when it comes to eating it. None. I have to have it. So, I just don't buy it. We have no junk in our house, no processed foods, no candy, chocolate, ice cream, cookies, chips, Cheetos, granola bars. Our house is pretty boring when it comes to snacks, fruit, veggies, plain with no dip. We don't snack, though. DH and I eat three square meals a day. J might get a snack at preschool, and in the afternoon. Right now he is eating a small bowl of frozen blueberries. Food isn't a big deal. We don't bribe with food, we don't reward with food. We don't have cable, so we aren't subjected to food commercials. We eat because we have to, because it nourishes us. Not because we're bored, because we have cravings, or because it's pleasurable. No fuss, no muss, if J doesn't like it, too bad. You get what you get, and we rarely, RARELY do seconds. That's how I was raised, and that's how I'm raising my children.
DH comes from a family of overweight people. For some reason, growing up, I didn't know anyone who was really overweight. It was odd for me to meet a whole family of people with weight problems, and to be heckled for being thin. I see the struggle, the health problems, the tiredness they face. I've heard the excuses. There are always excuses. DH, before I met him, spent five years losing 100lbs, through healthy eating, and exercise. He's been able to maintain his weight in the seven years we've been together. It's safe to say, we hold each other accountable for our weight, and for the weight of our children. No excuses, not in our house.
Ellie has PWS, she is always hungry. She is metabolically unable to take in as many calories as a genetically normal baby. That means she isn't allowed to eat as much, if we want her to stay healthy. We're in the "easy" phase, as some people put it. We're not into the thick of things, because she isn't mobile. At least we have control at home.
Then, there's school, daycare, grandparents, sleepovers, etc... to worry about. Food seeking becomes a tremendous battle. These kids are ingenious when it comes to sneaking in food. I've heard crazy stories, and I've met amazing parents who persevere, who fight for their children because their lives depend on that fight. It's not improbable that we will have to cut ties to people who can't or won't change their views on food, and its availability around a house, and its proliferation around every holiday. Holidays for me are more about the people, than about food. I don't know how we became a nation so food obsessed.
I don't know what the journey ahead will bring. I suspect, it will entail a lot of tears, fights, begging, pleading, lying, sneaking from Ellie, and perseverance from our end. Who knows if she will be able to comprehend consequences, but we've started with routine, with structure, and we're going to do everything we can to make it work. I am fully committed to ensuring Ellie never gets fat, and I have no problem saying never. I know it's not happening. You can hold me to that.
I can't tell anyone what to do with their child. I care about all children, about their health, because they are our future. But, it's not my place to judge their parents, or tell them how to raise their kids, just as it isn't their place to tell me what to do. We are all, I hope, doing the best we can for our children, PWS or not.
