January 28, 2013
by marfmom
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Marfan Awareness Month: Share Your Stories!

February is “Have a Heart Month” for Marfan awareness. It’s a month that I know we in the Marfamily look forward to 🙂

Many of you have guest-posted at various times, and I’ll be sharing those links on Facebook during the month of February. If you have not guest-posted before and would like to, I’m looking for the following types of stories to post next month: diagnosis stories, birth/surrogacy/adoption stories (that incorporate your diagnosis somehow), or celebration of life stories (sharing the story of a loved one who has passed away). You can write about yourself, if you are affected, or your child.

Please submit your posts to marfmom@gmail.com as soon as possible. Posts in any length or format (ex. – I’ve had poems submitted before) are acceptable. I welcome stories from related disorders as well (Loeys-Diets, Ehlers-Danlos, Beals/CCA, etc.). Please include a title and, if you feel comfortable, a photograph. I may edit for grammar and clarity.

Also, if you’re looking for other ways to spread the word about Marfan this month, check out the National Marfan Foundation’s toolkit!

January 25, 2013
by marfmom
5 Comments

The Liebster Award

The super awesome Kerry, of the blog Undiagnosed but Okay, gave me a blogging award called the Liebster Award! Thank you, Kerry! I “met” Kerry through (I think?) Ellen Seidman’s blog Love that Max, which has a special needs blogger link-up every Friday.

Along with winning the award comes a few tasks. First, besides obviously giving a shout-out to Kerry (seriously, go check out her blog!), I have to display the award:

Next, I pass along the award to 7 other bloggers that I love. In no particular order:
My So-Called Supermom Life: Jamie is a Marfan Wife/Mom. We met when I found her blog via a Google Alert. In the years since then, we’ve also been able to meet in person on a couple of occasions. I love when that happens with bloggy-friends! Jaime blogs about Marfan, but also just general life with 2 kids and a husband.

Running for Autism: Kirsten is an autism mom, like me. We “met” in an online support group for parents of kids on the spectrum. She is a runner and raises awareness for autism with some of those runs. Her blog is about autism and her take on current events. Kirsten is getting ready to go back to school to study writing, too.

Bird on the Street: Katy writes this blog about life with 4 (adorable) boys, ages 4 and under. Her oldest son has cerebral palsy. The family just started going gluten-free. One of these days I need to ask Katy how she came up with the title for her blog!

Connective Tissue Disorders: My Journey: This is written by one of “my” teens, Katie. She writes about chronic pain and living with Marfan syndrome.

Our Sunshine Angel: Kristin’s daughter, Callie, passed away from severe Marfan syndrome shortly after birth. Kristin continues to be a resource in the Marfan community, and has recently started the project Kindness for Callie.

The Giraffe Family: Another blogger that I’ve been able to meet in person, at conference! Marf parents will find themselves nodding along to some of “Giraffe Momma’s” posts. I love her explanation for the Giraffe nicknames for her family members…go read it!

Live and Love Out Loud: Kristi and I bonded over Twitter. Hers is NOT a special needs blog. Kristi takes gorgeous photos. Her family just moved to WA and her pictures totally make me want to vacation there.

Perspicacity: Bonus blog! I’m giving this award to 8 and you can’t stop me. Paula is a runner. She also has a huge heart and is always blogging about various charities. Sometimes she combines running and charity work…this year she ran a race for Autism Speaks and each mile was in honor of someone with autism, including one mile for M. Paula is a great blog friend!

Then, I have to tell you 11 things about me. I’m not sure why 11 and not, say 7, but it is what it is.
1) I’m watching this week’s Parenthood episode while I’m writing this.
2) I’ve been craving soup all day. But I had some for lunch from a can and it was not that great.
3) I love fuzzy socks in the winter.
4) I am missing California like whoa right now, especially seeing emails from my autism moms’ group there about a party tomorrow night.
5) Baskins Robbins’ chocolate chip milkshakes are amazing.
6) I am a night owl.
7) I was a huge Alias fan back in the day.
8 ) I speak fluent pig latin.
9) Most of my mom’s side of the family lives in Brasil.
10) I want to write a book but I don’t know how to find someone to publish it. I’ve had the title worked out since I was in high school.
11) In college, I got to present a research poster at a concert in Rome.

Finally, I have to answer questions that Kerry picked out:
1) If you could change one thing about yourself what would it be? My eyebrows. I hate having to get them waxed.
2) High heels, sneakers or flip flops? flip flops, but I love heels for the right occasion!
3) The Beach, the City or the Mountain? beach!
4) Who is your favorite singer/group? I have a lot…Adele, Train, DMB, the Lumineers are great right now, GooGoo Dolls….
5) If you could vacation anywhere (expense is not a consideration) where would you go and why? I’d love to do a UK tour to see my Marfriends there!
6) Do you mind that my blog is sometimes snarky? Nope!
7) What is one thing we would be surprised to know about you? Anything that I’ve already said, haha
8 )Favorite, guilty pleasure, TV show? I love Castle, but you should all already know that :-p
9) Favorite book or author? Phoenix Rising by Karen Hesse (it’s YA lit but I always cry when I read it)
10) Do you admit to having a favorite child? My favorite depends on the time of day, haha
11) If you could replace your life with one from the Disney Channel which show would you pick? I have nooooo idea. We don’t really watch it so I don’t even know what shows are on.

I’m going to be lazy and say if you won the award from me, just answer the same questions that Kerry asked 🙂

January 24, 2013
by marfmom
2 Comments

Review & Giveaway: Invitation Consultants

You guys! I am really excited about this review and giveaway!

Invitation Consultants invited me to review their Valentine’s Day line of cards. I became familiar with Invitation Consultants during BlogHer and have wanted to partner with them ever since, because I was so impressed with the variety of what their company offers.

For example, not only do they have cute party invitations (cards, birth announcements, etc.),

but they have posters (how great would this be in the nursery?)

and other types of gifts as well, like these notepads for the teacher in your life.

Anyway, I loved the valentine collection! There is something for everyone: cards for your kids to give out at school, invitations to parties, or something sweet for your sweetheart! I chose the Rocking Valentine to review. I knew M would love handing this out in school!

The cards came quickly and were wrapped tightly. (In case it’s not obvious, I added the white bar to remove M’s name for the review.)

They’re made of sturdy cardstock and the colors are vibrant. The picture I used was a little dark, but it still printed over clearly.

I really love the back of the card! Most cards have a plain white background, but this one is colorful and fun!

I showed these to M and he was very excited. I can’t wait for his class party now! 🙂

YOU can win 30 Valentine’s Day cards too! This Giveaway is open to US residents 18 years and older. One winner will be selected.
a Rafflecopter giveaway

* I was given 30 cards to review, and the company is providing the same to a winner. No other compensation was received and all views are my own.