April 19, 2014
by marfmom


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Friday Favorites

It’s Saturday, which means I was late in putting up Friday Favorites! Forgive me, then come on over and link up a favorite post that you wrote this week! Amy and/or I will come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too.


Friday Favorites with Musings of a Marfan Mom & Anktangle

April 16, 2014
by marfmom


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SmartKnitKIDS Review & Giveaway

Those of you who children with sensory issues (or have sensory issues yourselves!) will understand the difficulty in finding the right clothes. Clothes without tags, or that aren’t a certain fabric, or that don’t have seams that lay a certain way. We’ve got M comfortable with wearing long-sleeved shirts as long as they’re thin and not certain fabrics…no sweaters for this boy! It’s impossible to buy pants for my husband because he has very specific rules on what he’ll wear. Socks can be hard, too. J just flat out refuses to wear them unless he has shoes on, and M has to have the heel line up just so, or otherwise move the heel to the top of his foot. I count ourselves lucky because I know some children who won’t wear anything with seams at all.

Enter SmartKnitKIDS! They sell seamless clothes for sensitive people. You can find socks (even AFO/KAFO sizes), underwear, bralettes, and compression t-shirts. Socks come in adult sizes as well. When the company offered me a chance to review some socks and offer all of you a giveaway, I jumped at it!

I selected a pair of crew socks (in black) and a pair of ankle socks (in blue). Both of my boys were able to try on both types of socks. Note: sizing is not consistent between types of socks, so be careful when ordering. For example, the boys were a large in the crew sock, but a medium in the ankle sock.
SmartKnitKIDS socks
The socks arrived within a few weeks and the boys argued over who got to try which first. J didn’t keep his on all day, but it was better than with his other socks. M loved his and even wears them to sleep.
SmartKnitKIDS socks
The socks held up well in the wash too, which was a concern for me. I thought they might stretch or sag, but so far they look great, same as when we first opened the package! The overall material is thicker than on the regular socks we’ve purchased for the boys. So, while the cost for SmartKnitKIDS socks is definitely higher than for other pairs, they should last longer.

SmartKnitKIDS socks

ankle socks


This last bit may just be of more interest to Marfan families, but when J is up with terrible ankle pain in the middle of the night, thick socks really help. We’d just had the one pair of AFO socks that came with his AFO, but the crew socks are thick enough that they should also help with this pain.
SmartKnitKIDS

crew sock


Final verdict: These are a quality-made product that I definitely recommend if you or your child has sensory issues around seams!

Now, you have a chance to win a $25 gift card to SmartKnitKIDS! This giveaway is open to residents of the US and Canada ages 18 years and older.

a Rafflecopter giveaway

April 15, 2014
by marfmom


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The Gala, and a Hair Retrospective

One of the nice things about serving on the board of directors is that I’m able to attend the annual Heartworks gala in Manhattan. It’s the night before our board retreat (read: two days of long meetings) and is our largest fundraiser event. I get to put on a pretty dress, which is especially big for me considering most days I’m pretty sure I don’t even brush my hair.

This year I have put on some weight (yay stress eating!) and needed a new dress. I tried this one on and fell madly in love with it. I think sometimes I dress older than I am, but this dress felt very “under 30,” and was overall just a departure from what I normally wear. I splurged and got my hair done, too.
Heartworks gala 2014
Now, funny story here. See, I have a terrible track record with up-dos. I have a lot of thick hair and when hairdressers get ahold of it they freak out and feel the need to pull it tight and pile it up like a mound of poop on my head, or worse.

Junior year of high school, homecoming dance. First time getting my hair done. The woman actually uttered the words “I’m going to try something I’ve never done before.” When I finished, my mom gasped, called her friend Marysue, and we immediately drove several towns away for Marysue to attempt to fix my hair before my date picked me up. She made a valiant effort.

Senior year prom I went to a different salon, picture in hand. The woman in the photo had her hair divided into three strands and sort of twisted together in a very simple updo. Somehow, the hairdresser translated it into this. Most heard comment that evening? “Wow! Your hair is really…interesting!”


We can’t forget the Snowball dance my junior year of college. My friend Sarah dubbed this “Little Bo Peep On Acid.” It was a disastrous attempt at getting our hair done for cheap and even two friends working on it in the Fat Fish Blue restaurant bathroom while we waited on dinner to arrive couldn’t fix the nightmare wreaked upon my hair.

No, that’s not a shadow framing my head in the photo…that’s literally my hair. And in the back it was sort of folded in on itself in this weird partial knot…? My mom still almost pees herself from laughing whenever she thinks about this.

These are just a few highlights of my traumatic hair stories. So originally for this gala, I planned to use one of those bun wrap things and do my hair myself but – you guessed it – I had too much hair. I found myself making an appointment for an updo at the cheapest nearby salon.

I came armed with a photo of a fellow latina: Eva Longoria. I wanted a simple, loose chignon.

When I arrived at the salon I was overjoyed to see it was run by Latinas! Surely they had hair like mine and would know what to do with it!

Um, no. I showed the hairdresser the picture of Eva and explained that I wanted something simple and loose. After 5 minutes, she complained “your hair is so thick!” and brought in a second hairdresser. They argued over my hair in Spanish for awhile before the second hairdresser declared my hair too thick for a chignon. But, she told me, “I have a plan.”

Cue the feelings of terror.

My hair was exactly the opposite of what I’d wanted: complicated and literally waxed to my head. But, I actually really liked it! Hooray for a break in the bad up-do curse!

Not the best hair shot unfortunately


As for the gala itself, it was excellent! James Naughton was our MC for the evening. I was sitting at the best table in the room and made a new friend (Hi, N.!). Plus, we raised $1 Million! Congratulations and thank you to the Heartworks committee, who puts a lot of work into this event every year, and thank you to everyone who came and gave money to make it a success!