I’m currently making a bit of an effort to get in better shape, starting to run again after a very lengthy break, and getting my diet in a better place. I know all kinds of people have difficult relationships with food, but I think living with Prader-Willi makes me view food in a way that is just crazy.
So much of our culture equates food with love. Food is nourishment, right? We invite our friends and family over and share a meal- it is what is good, and expected, and hospitable. Food appeals to our senses. It sometimes makes us feel a certain way- that’s why we call it “comfort food.” When you live with Prader-Willi, though, food becomes a necessary evil. You’re living with the enemy. Something might be left out, left open, and terrible, unthinkable things could happen. It’s the center if your universe, and the elephant in the room. There’s probably not much of your time spent thinking about it. And if, perchance, there were a moment you weren’t thinking about it, the person living with PWS in your life will certainly remind you of it. Over and over and over again.
You eat pretty healthfully. You have to. You have to set a good example. You have to play fair. But there are times, when you’re alone, when you freak out and eat all of the things that you can’t have otherwise. You have secret stashes and drive thrus and parties at other places and you feed your face- because then, you can.
That’s no way to live. It’s not healthy. I want to do better. I want to feel better, stronger. I want to be nourished and satisfied by what I eat. I want to be fit as a role model for my sweet girl and others like her. I’m done eating whatever, whenever. Honestly, I’m a little hungry. It reminds me of what it might be like for my sweet girl. I have to figure this out for the both of us.
PS- this photo is not an ad, but Sophie loves this dressing (calls it “syrup” for her salad,) and I can’t find it anywhere anymore. Anybody got a lead?
Today was picture day at Sophia’s school. We curled her hair this morning, and the curls were still there when she got home! We were pretty excited about that, so we needed to document this unlikely happening. This photo is the first of the series.
My writing prompt for today was, “What surprised you most today?” I’ve been thinking all day about what I want to write here, where I want this “blog” to go. As I thought about it, I was really just surprised about how many ideas I had for things I’d like to share. I thought about sharing the obvious- the challenges & every day living with Prader-Willi syndrome. I thought about sharing my adventures the next few weeks- I’m going to be visiting friends, going on a retreat for moms of kids with PWS, and on a trip to Charlotte, NC over Sophia’s spring break. I thought about sharing crafting things, and I thought about sharing the personal challenges I am undertaking now, and in the near future. My thoughts are all over the map, but, apparently, so is my life, so I’m just going to go with it. If you have things you’re interested in learning about me, or about how we manage things with Sophia’s “hungry tummy,” don’t hesitate to ask. Apparently, I’m more ready to share than I thought I was.
What are you worried about? Ah- the age old question. I think it might be better to ask me what I’m NOT worried about. The answer would be much shorter & less complex. I am a chronic worrier. It’s interesting- I am a very optimistic, glass half full person most of the time, but once I get started, I just can’t stop the worry snowball effect. Don’t get me wrong- the things I worry about tend to be legitimate concerns. I worry about money, my family’s health & safety, if I’m being a good enough wife & mother, the mess that is my house, my friends, and the future. Many of these things are far beyond my control. I have to constantly remind myself of that & try to let it go. That is so much easier said than done, but I have to remember it’s worth the effort. That energy can be much better spent- on dealing with the things I can control. #RollerJournal
What would you like to remember from today? As we come closer to Sophie’s 4th birthday (19 more sleeps!), I would like to remember this, her 3rd year. She has come so far while she was 3- strengthening, speaking, questioning, sharing. She spontaneously tells me she loves me, she cheers everyone on, she is the girl you go to when you need a smile. She loves a “big surprise,” which is often a little something I picked up at the dollar store, or is something she needs. She laughs easily. She loves to sing, dance, & play her piano. She’s bossy. Really, really bossy. I’m working on teaching her to request rather than demand. She loves Disney movies, Eric is her favorite prince, she loves to steal her daddy’s spot in the “big bed,” and will give away her hiding spot with giggles every time. She is growing up so very fast. She’s mastered a million milestones this year- running, jumping, speaking in full, well thought out sentences. I was explaining to her yesterday about how her birthday is a very special day for me, too. I told her that when she was born, she changed me. I became a mommy for the very first time. What an incredible ride we’ve had, these nearly four years. I am so proud of her- who she is, how hard she works, how strong willed she is- even when that doesn’t always work in my favor. I can’t wait to see what 4 brings, but I will miss this, year 3. #RollerJournal
What’s the best thing you read recently? This isn’t an original answer, but I would have to say the best thing I’ve read recently was the Hunger Games trilogy. There’s so much happening in our current political climate that terrifies me. It seems that there is a movement for a government ‘takeover’ of our rights to access health care, to be safe on the streets- even the protections of the Constitution are being tested. The messages of the books- a privileged few benefiting from the oppression of the masses, utilizing fear as a tool of control, the fact that there are no easy answers and that rebellion will be met with swift action- it’s all there. Freedom to gather, freedom to speak freely, freedom to question authority- these are no longer givens in the ‘land of the free.’ It doesn’t seem so far fetched to imagine a large scale rebellion- and a post apocalyptic future. My favorite thing about the Hunger Games trilogy is how widely they’ve been embraced by the masses. I find that speaking to others about their experiences reading these books lends itself to my own expanding understanding of people and human nature. Yesterday, during the Easter Sunday mass, our Pastor, Laura, referenced a quote from the movie The Hunger Games- “A little hope is fine- a lot of hope is dangerous.” I think that is exactly what the current persons of privilege are afraid of- that as long as we have rights and hope, we can change things. I honestly believe that the current movement by government officials to limit freedom by whatever means necessary is born out of their fear of losing power. Until there is a change, a rising up, a populous demanding that their freedoms remain unencumbered- the story of the Hunger Games will not seem far fetched. I can only hope that we can hold on to hope during this frightening time- and stay dangerous. #RollerJournal
Day 7 of 30 days of Thankfulness. Today I am thankful that I have finally accepted myself as an artist. I think because the mediums I use are non-traditional, it has been difficult for me to understand that what I do is art. For some reason it’s always been in my head that one could only be considered a true artist if they used paper and pencil or paints. I’ve known so many incredible artists that use these tools to bring their visions to life, it has been easy to relegate myself to “crafter” status (not that there’s anything wrong with that!) However, the more I share my creations with others, particularly those I don’t know, the more I can see things through their eyes. What I do, not everyone can do. I weave yarn into useful objects. I collect beads and findings and put them together in ways that people see fit to adorn themselves with. I can sew. I can look at something and work out ways to re-create it. It’s taken a long time, but I am really grateful that I’ve learned to see what I do as art- and I am thankful to all of the people who helped me to see what they see.
Day 6 of 30 days of Thankfulness- I am amazed at how lovely this fall has been. I am so grateful that the temperatures have changed slowly and we’ve had the chance to see the trees explode with color. I am thankful that today I found my way outside to stand in the warm sun before tonight’s forecasted freezing temperatures hit. I am blessed to have taken the time to pay attention as nature prepares for her winter slumber. Lastly, I am so glad that I got to share all of this with Sophie. Comparing colors & shapes of leaves, stomping on crunchy brown leaves as we walked home hand in hand, savoring the last warm days as much as possible. I’ve enjoyed this year’s fall more than any I can remember and for that, I am incredibly thankful.
Day 5 of 30 days of Thankfulness- I love my car. Really, really love it. I am grateful to have it- and grateful for my wonderful in-laws who gifted me with it.
Day 4 of 30 days of Thankfulness- I am so very grateful for Stock Elementary, Sophia’s amazing school.