Musings of a Marfan Mom

February 25, 2011
by marfmom
5 Comments

Friday Favorites

Welcome to Friday Favorites! If you’re new to the blog, here’s how to play along. Every Friday I devote my post to showcasing awesome blog posts by other bloggers that I’ve read over the past week or two. I invite you to do the same and link up here, OR just link up directly to those posts you’ve loved this week. This is any easy way to share the love and find great new blogs.

I LOVED Jennifer‘s of Anybody Want a Peanut? post: Unspoken but True. Her son Moe is on the autism spectrum and so communicates differently than neuro-typical children. This is a really beautiful post about an affectionate moment she shared with her son.

I met Erin, who has Type 1 diabetes in graduate school. At the time, Mark & I didn’t yet know that he had developed Type 1 as well. Erin recently started the blog The Insulin Crowd and I was particularly drawn to her post The Most Awesome Thing I Have Done In Spite of Diabetes Was . . .. Working with people with chronic illness, and having a sister with Type 1 who traveled Europe, I hear “are you sure you/they should do ___?” a lot. Having an illness does not mean we should stop living, it just means we need to be more creative or thoughtful in planning our experiences. Click on over to see what Erin did (and it’s REALLY awesome)!

I can really relate to WendyKate‘s of ABCs and Garden Peas blog post, My Son, the Domestic Goddess?. She writes about allowing her son to play with a variety of toys, and the comments she’s received about that. I haven’t gotten a lot of comments about it at this point, but we let M play with whatever toys he likes, and right now that’s his kitchen set and a baby doll and his blocks.

And last but not least, the post Birth Day by She Suggests was very poignant. It’s about expectations and reality and really just speaks for itself, so please go check it out.



February 24, 2011
by marfmom
3 Comments

Positive Exposure Documentary

I was going to write about toddler stomach flu today, but instead you can all thank your lucky stars that I noticed Rick Guidotti posted the trailer to the upcoming documentary On Beauty. I’ve talked about Rick here before. He takes pictures of kids and teens with rare disorders that affect how they look and shows them how beautiful they are. Rick has been coming to the National Marfan Foundation conference for years and you can’t help but look at his photos and say wow. Our kids are more beautiful than any supermodel. I especially love at the end of the trailer when Rick says “F*** inner beauty, these kids are GORGEOUS!”

So true, Rick, so true.

I for one am so grateful at the hard work he puts into his nonprofit Positive Exposure (which is what On Beauty is about) to help these kids ands teens really celebrate themselves, and I can’t wait to see the whole documentary. I hope it’s available for mass viewing!

If you’re interested in Positive Exposure, they are on Facebook and Twitter.

Please check out the trailer!

February 23, 2011
by marfmom
9 Comments

Lymphedema Treatment

Before


lymphedema compression brace

Because my left leg is worse, it's been in this compression brace for most of the past week.


Unwrapping it for a brief break


Mummy toes!


lymphedema

The brace clearly shrunk my foot, though it's just temporary.

This is what part of my physical therapy for lymphedema looks like. I wear this for a few days, then get it off for about an hour. When my compression stockings come in I can wear those instead, and only use this get-up for when I fly.