It’s time for another make a difference Monday post! Today I’m super excited to tell you about an awesome event happening in Bloomington on August 30. My friend Sarah is a mother, a wife, a sister, a friend, a Christ-follower, and an advocate. She is passionate about her children, passionate about life and passionate about making a difference. I still remember when I heard that her oldest daughter, Lillian, had been diagnosed shortly after birth with Prader-Willi Syndrome. You can read more about PWS here. At the simplest – PWS means Lillian is always hungry, will always be hungry, and will always have to have her food intake carefully controlled.
Out of nowhere, Sarah and her husband had to learn a lot about having a child with a special need, learn how to manage Lillian’s constant hunger, and raise their daughter, despite this unexpected diagnosis in an otherwise uncomplicated pregnancy. While many people would crumble under that kind of struggle, Sarah and her husband rose to the challenge. They are a constant inspiration to me. They have two beautiful children. They have a strong, wonderful marriage. They are tireless supporters of PWS research and believe that a cure is possible for their little girl.
As part of their constant dedication to finding a cure for PWS, Sarah hosts a One Small Step event in Bloomington. One Small Step is a free family event, obstacle course, craft fair and more – all dedicated to helping raise money for PWS. They are raising money through donations and pledges, committing to help other PWS families as they learn how to live with and manage PWS. Here’s a little more about the event:
I am always amazed by Sarah. She fights for her daughter every day. I cannot imagine how tired she can get sometimes. She has to be careful about who she leaves Lily with because they have to know how to manager her food intake. She has to worry about social events and school, both of which center around (often sugary, empty-calorie) food. She has to be strong when the world seems to fight her at every turn.
It’s funny. I emailed Sarah to have her answer some questions for me for this post. Then I realized, all at once, that she doesn’t have time for that right now. She’s a few days away from a big event. Lily started school last week. She has a lot on her plate all the time. So instead, I combed through her facebook page and found some awesome information from when she was doing an awareness month about PWS. This one, in particular, stood out:
“How can friends and family best support you, Lillian, and your family? And on a related note, what actions or things said are NOT helpful, even when really well-intended?”
The best way to support us is to truly understand PWS and the struggle that it is on a daily basis. To know that we try our best to include Lillian in any and everything she can be. We want her to have best friends and sleep overs and play in sports that interest her and exceed in school. And please know that those things are so not easy for us or for her.
It might not come as natural for her as it does for your children, and we’re going to need a lot of grace and understanding when we get frustrated over the circumstances. We might be frustrated because we can’t escape the fact that food is everywhere and it is going to throw a wrench in her ability to focus and cause her distress and anxiety.
It would help if people would realize that food doesn’t have to be involved with every single event/party/celebration. And if it is, it would be helpful if it wasn’t the main focus or used as a “treat” or a prize. It would be helpful if people could get creative with holidays and instead of a candy exchange at every holiday, maybe create a craft or handmade cards or toys to exchange or games to play. It would be helpful if parents considered other children’s dietary issues during sporting events and if the snacks after soccer practice or cheerleading meets or t-ball weren’t loaded with sugar (because that’s a horrible idea anyway).
That being said, what does not help us, but is always meant to be well intended, is when all of those things happen mentioned above, holidays/parties/celebrations etc and they are surrounded by cake/cookies/sugar/candy and then you offer to get a healthy alternative for Lillian. Thank you for the thoughtfulness, I know you mean well and are going out of your way to insure she can be included. And we appreciate that VERY much. It’s still not creating a safe environment for her though, or any child with parents who would prefer not to indulge their children due to behavioral issues or allergies. Trust me when I say, there are a lot of moms who struggle and have a difficult time with this but choose not to say anything to you. I hope that this doesn’t come across as ungrateful, because every single one of our closest/best friends and family have done exactly this. And it’s thoughtful and we appreciate it and the thought really does count. Unfortunately it’s just not all that helpful.
You can read all of the questions and answers Sarah covered here: https://www.facebook.com/onesmallstepbloomington
If you feel inclined, donate to the One Small Step – Bloomington event here: http://onesmallstep.fpwr.org/dw/walking/location/993
Sarah, you are an inspiration to me every single day!