Many of you may have noticed my love for crafts involving Rory's hands and feet. Rory is my first and currently only child, so I naturally love documenting her growth in any way I can. My love for those little feet and creating crafts using her feet comes with a different reason.
Rory was born with a 1 in 300,000 birth defect called Congenital Femoral Deficiency, or CFD. It is where one limb doesn't grow as much as the other. In our case, it is her little right leg. (for more information on her condition and treatment please visit her
website )*
I started doing feet art when she was 3 months old. Since her right leg is smaller on the right side- her right foot is also smaller and I wanted to see just how much smaller. I broke out the paints. I dipped her feet in the paints and placed her sweet feet on the paper. She loved the paint on her feet and she smiled the whole time. So, I now love finding new ways to make Rory's feet (and hands) into animals and objects.
Her condition has completely consumed my life. Although I hid it from most people as long as I could, once she started wearing shoes it was impossible to hide the large shoe lift on her one right shoe (her current shoe lift is 6 cm).
For me trips to the store are no easy task. I am stopped at least once per store and asked about her shoe. I also receive comments (my favorite include how cute the little Lady Gaga shoes are, and how I must really like platform shoes if I am putting them on my baby) and Rory gets quite a few stares.
To make this easier for me to explain to people and for myself (and I encourage other mothers to do the same), I made little business cards about her condition and refer people to Rory's website. Now, whenever someone approaches me (or can't seem to stop staring) and I am short for time, I hand them a card and say She has a rare birth defect called
Congenital Femoral Discrepancy where her right leg doesn't grow as much as her left leg does. Here is a link to her website, please feel free to visit it for more information.
If you are interested in making your own cards, you don't have to have your own personal website, you could put a link that can help describe your child’s condition, or just type a little paragraph about what it is for people to read. I know for me, some days I do not want to see people stare at her shoe or hear anyone talk about the little Herman Munster shoe, and these little cards have saved me a lot of time (and tears) in explaining her condition.
You all are wonderful! I love being able to be so open with everything! I was a little nervous about the responses I would get to this post but am so pleased after reading all of your comments! Thank you!
What a great idea…pretty soon she’ll be headed off to school and she can hand out her cards herself. I know another Mom blogger who creates personalized books. She began her business by creating a book for her son to share his condition with his class. After the teacher read the book a few times it became part of the class library and he was able to take it to each new grade level. He gets less stares because they all know the story. Blessings to you and your beautiful, bright baby:)
What a great idea! My little girl has Alopecia Areata and is almost completely bald. We get tons of stares. Being that she’s only 2 years old people just assume it hasn’t grown in yet and assure me that it will grow in thick and curly and I can nod politely. But I’m sure in the coming years we will get lots more questions. Thanks for the great idea!
Hi Havalyn! First, I want to congrats you for been there for your daughter. I was born with congenital hip dysplasia which wasn’t found until 2 years later. As a consequence, my right leg got shorter, too. I had 10 surgeries before age five but ended with the same kind of shoe until age 12. I just had bilateral hip replacement around 1 year ago and still have a bit difference between my legs. People always stare, ask and talk, but your daughter will learn from you how to deal with her condition, the situations and get the best of the experience. For me, it was to become a physician and try to help. I applaud your inniciative (the cards are a great idea) and for been such an awesome mama. I know your daughter will be so proud for having you as her mommy. Sorry for any English misunderstanding, I’m still learning the language. Blessings! Maria
I think this is such a good idea because it shows those of us who have NO idea what to say…and will likely say the wrong thing…that you are open to talking about it. The cards are super cute.
Very cool idea and kudos to you for spreading awareness about this condition! You go, Mama!
What a touching story – I applaud you for handling what could be an awkward situation so well. I think the “business cards” are brilliant!!
My friend at http://oursonkai.blogspot.com/ has a similar approach. As an aunt to two special needs children (niece has a mild congenital defect, my nephew has a severe chromosomal defect) I am interested in how other mom’s address their child’s needs. I ask so as to learn if there is something I can pass along to my sisters to help them. Props for being open and not sensitive.
This is really wonderful idea! I bet people appreciate you sharing the cards with them.
Strange as it may seem I love the shoe lift and see it as the most amazing art canvas – you could paint scenes on the white part. I hope that the stares are because people are interested and not being rude.
Thanks for sharing your thoughts and your ideas.