You are here

My sweet 6 year old Kayla

Okay. So i have finally worked out a plan with my daughters doctor (she has seen her for the past two years and is amazing). We call it the sit and wait game!!! I love it. We were told early on that Kayla wouldn't walk roll over or crawl. They were all wrong. My daughter is very stubborn ( don't know where she gets it from-lol). When she wants to do something you had better hope that you are a part of it or you will have to clean up the outcome of whatever project she has gotten into her head. She would sit and watch my son running circles around her and stealing toys silently. If she got really mad she would let out one really blood curtling scream and resume whatever she was doing. Let me just say this was all after she had learned to roll over and sit up which she wasn't supposed to do!! Dr. Kathleen Mohen at Dartmouth hospital decided to take Kaylas case after we encountered many other doctors who either pushed us toword an amputation becasue of thier lack of expierience or others who where so flabbergasted by Kayla that they ultimatly told us that they could not help. Don't get me wrong. The docs who openly admitted that they couldn't help have my utmost respect because of thier honesty. I appreciate them not putting us through any unneccesary testing that they ultimately would not be able to interperate. Doctor Mohen has put us at ease. Kaylas femur is growing however slowly and just as stubborn as she is. She is now wearing a 2 3/4 inch lift and still an afo brace that is slightly more modified to her than before. My biggest wish for her is to meet a firend who she can share stories with and relate to. Is there anyone out there with a similar story that would like to have thier child meet another with the same prognosis? I want the best for Kayla and she has asked me to write a letter to "any girl" who would know what she goes through.
Please e-mail me at my personal e-mail
I do have one funny story to tell-
A couple months ago we ( kayla, my husband and my son and I) were walking through the local mall. Two little grey haired ladies stood off to the side staring at kayla's leg and they started whispering. Kayla (whose ears are as great as mine ) heard and saw them. I had hoped she hadn't. She stopped me dead in my tracks yanking on my arm when she stopped walking to turn and address these ladies.
Oh boy- I thought to myself. What is she doing now. Well, she stood stareing at them making them obviously uncomfortable. They stopped whispering and just looked at Kayla as though to wonder what she was looking at. She cleared her throat VERY LOUDLYand said, " Do you know what manners are?" The one lady to the left says to her , very politley, "excuse me?". Kayla procedes with- " well, obviously your mommies didn't teach you good manners! My mommy says it is not nice to talk about people who have problems and that is is really unpolite to stare and whyisper about them. You just did that all to me and I don't like it!" Well, by this time I am almost crying out of joy for Kayla finding her voice and out of the fact that my baby is so grown up about all this. The two ladies are looking at her in disbelief and with red faces. No answer from the ladies prompts Kayla to go on a little more. Now she looks at me and says " mommy, isn't it rude to talk about people, you always say that it is not polite and that no-one should do it, why didn't they listen to thier moms?" I didn't know what to say so I looked at the women and said to kayla, "Hmmm, Why don't you ask them?"
Kayla turns to them and says her last bit of wisdom, " You should know better since you are older adults, I don't think that you are very nice for talking about me. I never did anything to you. Stop stareing at people cause it's not nice. I think you were really rude" Then she turns on her lift and tugs me to go with her while these two women still stare at me as if I am to correct her for talking to them like that. I let my husband grab her hand and I turned briefly to these women with a big smile on my face!!! I said " that's my girl- I agree with her!!!!" and I walked back to my wonderful family and enjoyed the rest of our day at the mall!!!


It's wonderful to hear how Kayla stood up for herself. She's going to have to do that a lot in her life, and it sounds like she's a pretty confident girl!

Having BPFFD, I can tell you that there is always someone who stares. Most days you can take it and ignore it; some days it bugs the heck out of you.

A few weeks ago, I was on vacation with my family. We went into a fast food restaurant for lunch. There was a set of grandparents there with their grandkids, one of whom was about 5. He was ahead of us in line with grandpa. He kept staring at me, and I knew he was going to say something. He asked the grandpa, "Is she a grownup?" Grandpa said yes and the grandson asked, "Why is she so small?" The grandpa did a great job and responded, "People come in all sizes."

We ended up sitting at the table next to these people. The grandson said to the grandma, "That lady is small." The grandma replied, in what I'm sure she though was a whisper that I wouldn't be able to hear, "That's what happens when you don't eat your vegetables."

I couldn't keep quiet. Very politely, I said, "Excuse ma'am. I am very offended by what you just said. It's untrue and it's rather rude." The woman was absolutely mortified that I had heard her comment. She came over to our table and apologized with tears in her eyes.

While I felt bad that I made an old lady cry, I was rather proud of myself for not keeping quiet and letting her lie to her grandson.

Kudos to Kayla for finding her voice :)!

It's so uplifting to hear these stories. I have BPFFD with an above knee amputation on one side. When I was a baby (I'm 31 now), my mother made a point of not hiding my legs. We grew up in Florida, where it's almost always hot, and so I was always in diapers and a T-shirt. One day, when I was a baby, a man turned to my mother while she was in line at the grocery store. He asked her, 'What's wrong with your baby". My mother said in her smooth Cuban accent, calmly and curtly, "Nothing. She was born without a leg like you were born without a brain". I know it's human to stare and wonder, but it does get a little old. I never mind the children, it's always the adults. I try to use these moments as a chance to educate (but I have to admit, it is fun to make the really rude people feel uncomfortable sometimes). The nice thing is now my 5 year old speaks up too. If she sees someone staring she'll say, "There's nothing wrong with my mom. She has one leg. You can ask her about it if you want to". The thinks it's fun and LOVES being a know-it-all. As a mother now, though, I can't imagine what it's like to have someone stare at your child like that. People staring at me- I don't care. But if someone made one of my daughters feel like an outsider... I don't know what I'd do. I really admire you parents out there that deal with it. The story about my mother- what she said- is funny until I really think about what it was like for her in that grocery store.... piles of food, a wiggling baby in her arms, and the spotlight. I imagine all the blood rushed to her face and her heart stopped. How to keep it together when you feel your kid is being attacked, but not to make a scene, because it would probably affect your kid more than the person's comment. It must be so hard to find the right balance in the reaction. So, good job parents.

The way I have handled stares has changed with age, but one of the more entertaining was in college. Friends and I had a game when we went to the mall to guess upon arrival to the mall, " how many kids would get slapped or carried away by their parents in a set amount of time?". We had rules to this game, both feet had to leave the floor to count as carrying and cupping the parent's hand over the mouth did not count as a slap. The friend guessing closest usually was treated to a soda or something by the rest. Of course, the kids were never the was their parents and it was probably wrong of us, but it made the situations awkward for the parent, rather than awkward for me. (btw-one of these friends is now a special education instructor) And yes, sometimes the parent that made one of us the winner was thanked for their behavior.

Now our family is the stare magnet and I don't mind. I hope it redefines the watcher's definition of ability and human worth. One of my children waves at those who stare and I just love that response. Sometimes I wish I had taken time to dress myself or one of the children better....but I know if people are staring then they are noticing that I have a fantastically unusual and blessed family that only God could create.

I know just what jen is saying. I have UPFFD and gets lots of stares which i am now used to so it generally doesn't bother me. But whenever i go shopping or out to lunch with my mother she can get really upset. Most of the time i know she is trying to hide it because it makes the stares more obvious and harder to ignore. There has been times when she has had a sharp tongue to incosiderate passersby, who clearly want to know whats wrong but are also forgetting their manners at the same time. The a deal with it when i can't ignore it is to just stare back and make the other person feel just uncomforatable as i do when i get stared at. I love Kayla's story and i'm sure i have heard similar stories from my childhood, which means if Kayla continues beingconfident and outspoken, she will not have a problem getting through the difficulties in life


I really got a chuckle out of that story. Like lindamo mentioned, when we are in public, we are always going to be starred at. I find myself trying not to be to obvious, but still stare at others who are a Little different. It's just the nature of us humans.
I work in the office of a moving company, and I remember about thirty years ago a truck driver came into the office. I could see by the way he dressed and acted that he was not the brightest bulb on the tree. When he came into the office, he looked at me and just bluntly said
"what happened to you" . I was kind of taken back that someone would be so blunt. I politely told him that I was just born this way.
Then he said "people like you don't live very long". I thought that comment was way out of line, so I looked at him with a smile, and told him that I hope I live long enough to dance on his grave. I think he got my message.
Anyway, I think kayla will have a lot of stories to tell by the time she gets to be my age.

A doctor that examined me in my first few months of life said similar kinds of things, i'd been about 3 months premature and after he'd examined me he said, he'll never sit up, stand or walk, probably has hearing and vision impairments, just take him home and love him!
It really is silly to make such broad statements early on, because who knows! Little did he know, i've always thought it would be great to have gone back and visited him, prove him wrong, but he's long since dead.
Kayla's response to stares and whispers, that's fanatastic, good on you, and thanks Kayla's mom for sharing that with us.
I have to agree with Duane, i think it is human nature for people to be inquistive of people that are different, but you can be subtle in how you do it, not blatant staring and loud whispering. I sometimes find myself looking at other people with disabilities wondering if they have anything similar to me, but not staring gormlously. I am naturally an inquistive person, and interested in things that i have a connection to.
I think if education about disability was far more detailed from a young age the problem of staring etc wouldn't happen as much in generations to come. In a simplistic way, saying every kid growing up would benefit from having a disabled friend, i think is true. I hope that any of my school friends right from 3-4 yrs old to university level will have a better knowledge and outlook because they've known, lived and interacted with a disabled person.
Different people have different toleration levels of what they can put up with, i'd say i'm an old hand and it really doesn't bother me most of the time, i do though sometimes find myself staring back, even at kids, and i so feel like saying, hey what are you staring at! but i don't, can i help? would be more polite. It was good to read the more witty ways to respond. With Linda's experience recently, I think though sometimes people need to be made to feel bad, embarrassed, ashamed, to make a diffrence for how they'll be in the future.

Dave Bailey

Loved Kayla's spunk!

We have developed the phrase, "We must be in the land of Stare-a-lot!" when we get . . . stared at a lot.
It has really helped our daughter express her frustration with this in social settings. We have tried coming up with responses to people:
1. I was born with a shorter leg and can get a lift. You, however, will never get a brain.
2. I notice you are staring at me. Can I help you?
3. Dad's "communicative approach" - just walk up to the person and ask them a question e.g. "Can I help you?"
4. I (mom) point out something unusual about the kid that is staring in a loud voice: look at that sticker she has on her hand, etc. The kid usually looks away really fast.

We're looking for other creative, and even polite, ways to alert people to their own lack of manners.

I enjoyed reading about Kayla's response. Great for her. I want to share two stories both from this past week. A young girl did the "Mommy, Mommy" and a mad dash for my children at the playground. As they approached I thought "here we go again" and put on my" life is great, just born this way stranger smile". They asked if her daughter could say Hello to my son. This was the first time for such a kind approach, making my answers a little less short Well in conversation it turns out her daughter also had a prosthetic and was excited to see somebody like herself. I hadn't even noticed the girl's helper leg. Then a few days later,we were at a function and noticed a man with a prosthetic arm. I asked him if he would mind showing off his arm for my 2 year old son. He made the components move as I told Cody about his helper arm. It wasn't until I thanked him for helping let my son see somebody like him, (with a helper arm/leg) that the man realized Cody wears a prosthetic. My children had been running around for half an hour before hand, and this man had not seen seen Cody's leg! So it was I who had made the rude approach and questions. (Kind of). I'm sure there is a leson or two in these stories. And once again I get to change part of how I perceive and react to these situations.

YES KAYLA!!!!!!! I'm so sick of the sares and whispers...and Brooke is only 6 months! I just go over now and say" It's called bilateral PFFD, and yes, she is missing both her arms, and no, the dr.'s have no idea why...adbn yes, she IS VERY healthy....that usually either shuts them up...or they ask more "polite" questions. hehehehe

A question of why came out in my mind when I got PFFD son. A feeling of embarrassment when people stared and laughed at him. Anger would sparked, and I would pity myself for having one with defect.

People disappointed me. Lots of many questions asked, Do you take pills before? Have you fallen when pregnant? or Any relative with that condition? Some would have pity emotion and would say, we felt sorry you got one with defect. My answered is no, Never I pity my son and felt sorry. I pity the person who do not understand people like my son. I guessed for people with deformities or with relative like one understand more than without one.

When people stares with my son. He just smiles and would say Hello good day, God bless you. They will not insult him and they would say You are a smart boy.


Thank you for posting this