The Power of Prader Willi Syndrome Moms
Did you know that mothers of children with Prader-Willi Syndrome have up to twice as much stress when compared with parents of other developmentally disabled children? In addition, parents with disabled children already report a 10% higher number of stressors then the average parent. Not to mention a recent American Psychological Association poll that found that one-third (32%) of parents in general report that their stress levels are extreme!
Wow.
Needless to say, being a mother of a child with Prader-Willi Syndrome can be difficult. You would think that with all of that pressure, PWS moms would just give up and stay in bed all day.
But PWS moms are different.
I have met countless PWS moms from around the world. I have talked to moms right after they got the diagnosis of Prader-Willi Syndrome and moms that have been watching their children 24/7 for 30 years to make sure they don’t steal food. What I have seen is nothing short of amazing.
In this picture alone, these extraordinary women are mom’s that are overcoming personal challenges, while raising children with special needs and choosing to believe by:
- fighting MS and raising her daughter with PWS from a wheelchair
- starting and running the gala for 5 years
- flying in from Alberta, BC, Quebec, NB to our national conference to learn new tips to help their children
- working with multiple PWS organizations to provide the support our families need
- working full time jobs and joining a committee to make a real difference in our community
- attending PWS events and fundraising for any organization to eliminate the challenges
- planning, attending and expanding galas and walkathons to cities and countries all over the world
- organizing golf tournaments , poker tournaments and spaghetti dinners to raise money for research
- sharing their energy and passion with newly diagnosed families…..just because, they want to help…..just because, they remember how it felt to get the diagnosis and what they have over overcome
My personal theory is that adversity makes us stronger. The challenges that these PWS moms have faced, have allowed them to cut through the BS we all face everyday. Dealing with PWS, has allowed them to get to the core of the matter … we’re all imperfect, we all love our children, we all want to do everything we can to help our children. No matter how big. No matter how small.
If you are feeling stressed, here’s a few thoughts:
- Don’t worry - It’s natural and you are in good company. All of the moms I’ve talked about will tell you they feel stressed. They will also say they have had their share of days where they did simply stay in bed.
- Talk to other PWS Moms – I’ve heard over and over, how relaxing it can be to simply talk with other PWS moms who “get it”. Find someone in your area, talk to PWS parents online, or join the mothers pictured above for a night out at our 5Th Annual FPWR Canada Gala
- Find what works for you - Everybody manages stress differently. Take a look at what others are doing , try this stress calculator or checkout 10 Ways to Take Time Out for Yourself. The key is to take the first small step and do something to get momentum.
- Do what you can – You don’t need to solve world hunger or cure PWS by yourself. Maybe today, all you can do is go for a walk … and that’s okay.
“It is the greatest of all mistakes to do nothing because you can only do a little – do what you can.”
Janis Tull Williams Says:
Love conquers all, even stress (most of the time). Sometimes stress wins but the love remains. My sister once asked me why I was so obsessed with food. It seems that was all I could talk about when we had conversations. I would talk about new food items I had found, healthy recipes, calories, etc. I told her that food controlled my world. I have to think about food almost all day because my daughter does. I have to plan meals, think about calories, listen to “I’m Hungry” all day long sometimes, make sure no food is left out, spend hours in the grocery store reading labels. Food is everywhere which causes stress to me because it causes stress for my child. Being always on the lookout, trying to avoid the next meltdown and when that is impossible, trying to just ride it out until it is over. I hate PWS but I love my child. I look forward to school days so I can get a break. Its late, I’m rambling, so I am going to end this. But I think PWS moms rock.
Posted on March 6th, 2011 at 10:48 pm
Teresa Campitelli Says:
A dear firned of mine has a beautiful little girl with PWS. I am in awe at how my friend and her husband take on the challenges that PWS has brought to their lives. They in fact have two children who are the centre of their lives and regardless of the fact that one child has PWS both their children are at the centre of their lives. My friend has sacrificed a great deal and I have seldom if ever seen her put herself first!.
She is a woman with much integrity and has enducated us about PWS but also has been instrumental in making better food choices for our children and school initiatives. Her efforts are exhausting and her determination unwavering. It is an honour to know her!
Posted on March 7th, 2011 at 3:40 pm