Friday, October 23, 2009

A little bald girl

Just curious...If you didn't know our family, and you were to see us in public, would you feel awkward talking to us because our daughter has no hair? Would you feel like you couldn't acknowledge that for fear of hurting our feelings or upsetting us? Or what would your rationale be for not mentioning it?

I am asking this because when we are in public, Ava gets stares and we get questions ALL the time from little kids...I mean seriously, all the time.

Yet I think I can count on one hand the number of adult strangers who have even acknowledged the fact. (And most of those were on our trip to Missouri. Maybe Missourians are more outgoing than Oklahomans?)

Take the little boy in the striped shirt for example. When I asked him if Ava could ride on the merry-go-round with him, he said, "Sure! Does she have cancer?" I answered that no, she didn't have cancer, she has a condition called alopecia that keeps her head from being able to grow hair. He said, "Oh, that's like cancer though, right?" :) I LOVE innocent questions like this.



I stood in Hobby Lobby today and had a 10 minute conversation with a woman who wanted to talk all about Ava and Down Syndrome, since she has a 50 yr. old sister with Down Syndrome. But, as I expected, because she was an adult, the question didn't come up about Ava's head. Many times I mention it anyway, just because I know people are wondering, but today I let her talk and talk, wondering if she would ever ask. And she didn't. :)

I admit, I have always been one to not ask personal questions such as this as well. After all that would be rude, right? But having this 'special' little girl in my life has made me see things differently. Now I prefer people wouldn't pretend to not notice, I would prefer people not just feel sorry or wonder, but to openly acknowledge her unique qualities. I don't mind answering questions and sharing her story. Every person in our family is very proud of Ava, and we think she is still just as beautiful without hair as she ever was with it.

I will say this....having a bald child has had some benefits. We have had our meals paid for in restaurants by random strangers on more than one occasion. We get occasional discounts and moved up to the head of the line. On occasions like that maybe it's best people not ask. ;)

I have been experimenting with some changes in her diet, just because it would make sense that her diet must have changed dramatically after joining our family, and maybe that is the reason for such dramatic hair loss. I reasoned that sugar and gluten were probably not something she had much of for the first four years of her life. Remember she drank broth, vegetables and rice pureed in her bottle.

For the last two months I cut all sugar out of her diet. When that didn't make a bit of difference we gave in on the sugar and last week we started her on a gluten free diet. There is absolutely no guarantee it will make a difference at all, but I feel like I owe it to her to do whatever I can.

For your enjoyment, here is my beautiful bald girl without eyebrows....


And just for fun, a picture of the beautiful eyebrows uni-brow that I miss so much.

36 comments:

Hevel said...

Honestly, I wouldn't bring up her bald head if I saw you in public and ended up talking to you for whatever reason. Maybe only to ask how you manage to keep her skin unburnt. (that was always a major concern for me when I lost my hair.) I don't think the reason for her baldness is any of my business, and there could be a gazillion reasons for that. But I'm 100% sure my kids would ask.

Anonymous said...

You know on adoption boards all the mommies who get bent out of shape if you bring attention to their kids and ask about adoption? SO I'd probably not ask for fear you'd be one of those moms who'd get bent out of shape. On the other hand, if you brought it up, I'd probably ask questions. The baldness would not stop me from speaking with you and her. And most likely, knowing that Leukemia is more prevalent in DS than in the general community, I'd probably just assume she had that.

Jan

Charissa said...

Hevel, that would be layers and layers of sunscreen, since she won't wear a hat. Although she is getting better about hats. I learned my lesson that I must have sunscreen in my purse or in the car at all times.

Shea said...

I wouldn't ask, but to be honest, i would look, not just because she is bald, but I think she is really pretty and has very delicate features. A.J. would most likely ask because they do those St Jude's fundraisers at her school all the time and she knows about cancer and loosing hair because of them, and of course she is growing her hair for locks of love for Ava :)) You should hear her tell people about apecha lol. She tells them that's why she is growing her hair out (praise God we only have about 6 months to go, it's been tough lol).

Charissa said...

Shea...You just made me cry.

Cammie Heflin said...

She is so gorgeous! I hope I wasn't one of those sassy Missourians though!

Stephanie said...

I ask. But I've been around enough special needs families to know that it's ok to ask and I just am very interested in medical stuff in general. My kids ask and when they ask me I don't hush them up but I try to explain the best I can and I know it has made a difference in their ability to accept others as they are. On the other hand I have read other blogs where parents have reacted very rudely to people who wonder. I guess you get sick of having people stare and invade your privacy but what a great time to educate people. I don't think most people are intending to be rude but just wonder because they care or want to understand.

Stephanie said...

I ask. But I've been around enough special needs families to know that it's ok to ask and I just am very interested in medical stuff in general. My kids ask and when they ask me I don't hush them up but I try to explain the best I can and I know it has made a difference in their ability to accept others as they are. On the other hand I have read other blogs where parents have reacted very rudely to people who wonder. I guess you get sick of having people stare and invade your privacy but what a great time to educate people. I don't think most people are intending to be rude but just wonder because they care or want to understand.

Alice said...

My oldest sister wore a brace on her leg for many years. She was frequently on crutches or in a wheelchair. Now she is an amputee. She has always gotten stares. Sometimes people would talk to the rest of us like she wasn't even there. She always prefers questions. I try to ask or comment on the condition that gets my attention. It doesn't always work out, though. Some people get quite offended. If I saw Ava, I might ask you if she has a big collection of hat, or how you care for her scalp.
Anyway, my sister is in her 50's now, and most people still stare and give her a wide berth.

Marlita said...

I agree with Jan. Some parents get defensive, and although you aren't one of them, I think that you are doing an amazing job with her.
Having her with me sometimes, I get asked questions too, and I am with you that I would rather get asked about her than people just stare.
And as for her hair... She is beautiful without it, and I'm glad she lets me kiss her head.

Jill said...

She is so beautiful.

Leah said...

I would ask about a growth on YOUR face, and I wouldn't ask about a facial malformation on your husband's face. That would be rude, right? So why would I ask why she has no hair? It's none of my business. I get irritated when people I don't know ask personal questions, then get cranky with ME when it's obvious I don't care tell a complete stranger my child's medical history. They would not ask those questions about an adult, would they? Don't get me wrong, I'm not rude about it, but I do have a list of scripts in my head to respond to various comments. It really depends upon the day, and my mood at the time how I respond. Now children are different. I'm happy to answer questions for kids. Now, if someone tells me they have a child with DS or some other disability, then I'm an open book! LOL That said, I'm in the "she's beautiful!" boat. But, I think Ava is STUNNING. I have always thought that her lack of hair makes her beautiful blue eyes all the more beautiful.

Mandy said...

I would definitely come up and talk to you! My kids would be overheard saying "I think that girl has DOWN SYNDROME doesn't she??" (and you would know I was their mom cause I would be turning red and telling them that it's ok to ask but that we don't need to be so loud when we ask questions like that! LOL).

My 3 older kids LOVE to scope out other people with Down Syndrome and don't see it as anything wrong but that they are a "cool family like us."

Personally, I wouldn't ask you about Ava's head since that dreaded "L" word is so closely associated with children with DS. I would tell you though how stinking cute she is and if she would go to the Prom with one of my boys in about 12 years!

Justine said...

I wouldn't ask. Honestly, I would be concerned I would offend you. I am very interested to observe my own reactions to being the object of stares when Timothy gets home. The one experience I have of something like this is the large scar on my face. It doesn't bother me at all when people ask, but then again, I never feel stared at.

Caroline said...

I wouldn't ask either for fear of offending you, but I *WOULD* smile at both of you and tell you how pretty your daughter is (which she IS!) :-D I would be trying to follow that delicate social line of trying to be polite but still including you in a friendly way and making you both feel normal just like anyone else.

kirsten said...

I would look at her b/c she's beautiful...really a pretty child. Inside and out.

Molly said...

Wow, these are great comments and I had to read because we get lots of questions all of the time.

As much as I thought I would have a simple reponse that would fit every situation I don't. There are safe places to answer questions, and safe people. In an effort to help my kids feel like every other child, I don't feel like I should share their story with strangers. It's appropriate sometimes, but definitly not as much as we are asked. SO, this is why I didn't ask you and didn't even address her baldness. Like everyone else has said, I don't feel like it's my business. I "met" her first on the blog...it was the only Ava I knew. It was normal for her to not have hair, so I didn't really even notice it. How funny is that?

Praying for your family...

Lucie said...

My son goes to school with a boy
who has alopecia- they are in grade 10. My son has said that some students that don't know him think he has cancer. Most people know someone who lost their hair to cancer but not alopecia- this boy is the first person I have ever known with this condition.

I would never say anything about it. I might talk about DS and adoption- but would not talk to you about the lack of hair. I don't know why.

My youngest is very short- I have always heard comments about this- I still meet moms who ask me about him- has he grown? I always found this very odd- as if they think we have any control over his height.
People always notice when someone stands out- no matter what it is.
(He has grown and is now more average) If Ava's hair grows back one day she will blend in more- but who cares- she is such a cutie!!

Tilly Cat & Pip-Squeak said...

I wouldn't ask. But it wouldn't be for fear of offending (I come from a culture where people are a lot more "nosey"! I still get surprised when I read the things people find offensive in various adoption or special needs boards.

I wouldn't ignore her, and I would talk to you and her, but not mention the baldness. The reason is (after I thought about it trying to understand my gut reaction,) that I would think it's probably cancer... I see special needs as something that can bring a lot of joy to a family, but I can't imagine anyone appreciating their child's cancer... So I would feel very awkward bringing THAT up.
I would also fail to stop myself from staring :) She IS cute and lovely, and also you don't see many bald little girls around. I would smile at you to show I mean well and hope you didn't find it offensive :O)

Larsen Family said...

I probably wouldn't ask unless you said something about it. I would probably view it as being nosy, but I'm not sure. But honestly, I don't strike up too many conversations with strangers anyways. I guess I am a really shy person. I will offer someone to go in front of me in line if they have less items than me, but to start a conversation with someone, is just NOT me. Kudos to those who are, but I'm not.

Amy L said...

I get a huge smile on my face every time I see another picture of Ava! She just has that adorable look and I think her bald head is just as cute as can be!!:)
I know what you mean about the questions, I love to talk about my children to anyone that has a question. I'd rather they ask then assume something wrong.
Amy

jennifer... said...

You know what, I think I know the answer to this. Whenever I observe a characteristic not seen everyday, I assume they are already crazy from explaining the same thing to people all the time. I feel like I'm giving them chance to be normal with someone for a change. I met identical twin nursing students the other day. I never said anything about it and just asked them questions about school. Everyone else, though, only noted to them that they were twins. I just imagined that they would love to have something other than their "twin-ness" identify them occasionally. Maybe that's what other are doing for you.

Jaimie said...

i would say, WOW she is absolutely gorgeous :)

Rachel said...

Wow! That really gave me something to think about. I am not sure exactly how to respond although if I saw you I would probably want to say hi to you and would not ask about her hair because I already know she has alopecia. However I would not ask someone that I just met why their child was bald because I figure they would tell me if they wanted me to know. By the way, Ava had beautiful eyes!

Rachel said...

Oops... that was supposed to be Ava HAS beautiful eyes! Pardon my typo :)

Qadoshyah said...

I don't know if I would ask or not. I would probably end up asking though, just to know if she had Leukemia or alopecia or if it was something else. Since I am familiar with the problems that cause hair loss (not person experience, but others I know ;)), I don't think it's a weird thing. It's just something you have to learn to deal with properly (protecting from the sun, etc).

Have you had her zinc levels tested? You may want to consider that as another thing to look into, since low zinc can attribute to hair loss & alopecia.

Qadoshyah

My name is Sarah said...

This is Joyce. I really had to think about this. Focusing on Ava's beautiful face, I truthfully think it would depend on how much time I had. If I was in a rush I would not say anything just in case the mom wanted to tell me all about it and I would have to cut her off which would be rude. I think I also would take my cue from the mom. In your example in Hobby Lobby, I would have said something because an exchange was already taking place.

Anonymous said...

I've been working with special needs kids for about 5 years now, I absolutely love what I do! I would try to talk to you and Ava. I may start the convorsation with something about how beautiful she is, but I would also ask questions about her, I am very curious about each child and their situation. I look at each of the children I see everyday, they are all special and placed by God in this World with a purpose. Some may not be raised in the best of circumstance, we all have our own story, each of us can make a difference with another person (with special needs or a person with needs, we all have needs) by just reaching out, saying "Hello, How are you?" Let them be the mose special person in your world at that minute. :)
Amy

Anonymous said...

Well considering I almost started crying the second I realized who you were I can tell you that I glimpsed Ava in the back seat and immediately thought that the pictures you have posted do not do her justice...she is absolutely breathtakingly beautiful...and she had a huge smile on her face.

Having said that - if I had never read your blog or knew who you were - I'm not sure I would ask either. I would not want to make you uncomfortable or upset. And I can promise you that my kiddos (Addie in particular) would probably walk right up to you or Ava and ask how come she didn't have hair.. :)

Stacy
formerly in Mannford - now Sand Springs - woot woot!

Beth said...

Charissa, if I met a child who was bald, I would assume that the child either had alopecia or was on chemo. Since I knew about alopecia long before I read your blog, I probably wouldn't be asking questions about that. I think I would likely do my best to let the child be a child and not butt into their lives--they're on the playground for goodness sakes, let them play.

I do find, however, that when I start up a conversation with a mom who has a child with a "difference", usually they find a way to bring it into the conversation, especially if I've got my child with Ds with me.

Anonymous said...

I would automatically assume that she had cancer. I have been around St. Jude's hospital enough that it would not be a big deal, but prior to that I would have avoided eye contact so you wouldn't think I was staring. Ava really is a beautiful girl, hair or no hair though. Hopefully she smiles and waves to them. People stare at us all the time because Carson has DS. He always says hi, waves, and if we aren't careful he will go give the men a big hug. We do meet a lot of nice people that way though- but I do get tired of hearing every story about every person with DS that they know- especially the negative ones.

Kayla

Shelly (bradley's mom) said...

I am not so sure i would ask, but not because of what you might say but because she is so beautiful that it has never cross my mind. I know i don't see you guys very often but she is an amazing child and you are very lucky to be blessed with her.

depbluestar said...

awwwwh. she is the most precious little thing=] its been sooo long since we've seen you and your family it makes me sad=[ i dont think i would mention it to her but to you. and ask if she prefers whether it be addressed or not. i love seeing little kids that have some so special or different about them. and i love it when they look up and smile at you. -danielle.

Nikki said...

I just came across your daughters picture & I see this is an old post but, I just had to let you know She Is Beautiful!!
What a cutie pie!!

I don't know if I would ask or not. My mom also has alopecia but, still has some hair (she's a wiggie=) so people don't ask her about her hair loss.

Some people are really sensitive & would think it was rude to ask.

I would def let her know how adorable she is.
She has such a pretty face <3

Nikki said...

I just came across your daughters picture & I see this is an old post but, I just had to let you know She Is Beautiful!!
What a cutie pie!!

I don't know if I would ask or not. My mom also has alopecia but, still has some hair (she's a wiggie=) so people don't ask her about her hair loss.

Some people are really sensitive & would think it was rude to ask.

I would def let her know how adorable she is.
She has such a pretty face <3

Russ Menefee said...

as a cancer survivor, i really love this story! im so glad u adopted her, everytime i see bald children, it just makes me smile :)