Wednesday, September 26, 2007

Sweet Caroline

No one has asked me this question, however I feel I should give an explanation to
why I photograph Caroline so often.
My older three are well past the "hey, you want to dress up & let momma take some pictures"age.
I think after years & years of taking over 1000 pics at the beach I've burned them out!
Caroline is still quite the trooper though.
I really didn't get "into" photography until 4 years ago when we purchased my Canon rebel slr. (& now I have my digital canon xt & love it).
thank ya'll for all the super sweet compliments on the girls. That always does a mother's heart good...
let me tell you why its even more special as far as Caroline.

Caroline has a genetic condition called ectodermal dysplasia. We put a couple of thoughts together & presented our concern to our pediatrician. We were sent to a dermatologist who immediately felt this was what she had. Then onto the genetics for counseling.
The disorder affects some or all parts of the ectoderm--skin, hair, nails & teeth and can be mild to be quite severe.
The most concerning presentation is sweat glands that do not function. These children can actually die due to their inability to thermal regulate. Caroline does have sweat glands which was obviously the doctors main concern.
"Have you ever seen her perspire?"
As we thought about this we talked about how when Caroline was little she would run very high temperatures
often as high as 105.6. It takes her much longer than the average person but she does cool her self down, we just have to watch her carefully.
These children can have no hair at all or it can be very very dry & brittle and fall out easily. Caroline's hair is very very soft , its just very slow growing.
She has never had a hair cut, only a few trims of her "curlies" in the back.
These children can be born with no teeth at all , and no nails.
Caroline has stunted growth of both of these. She will have her baby teeth for some time.

I know there are many worse case scenarios . I am very very thankful she does not have it any more severe than she does. She will need further genetic counseling to determine whether she carries the dominant or recessive gene and how that will affect her future.
That & the fact that she will require extensive multidisciplinary intervention regarding her dental needs, that's "all" we have to worry about.

But lets face it, children can be mean.
She came home the other day very sad because a couple of the children picked on her because she hadn't lost her baby teeth yet.
grrr...
She often times asks "when will my hair be long like my sisters?".
I told her God created her very special & made her absolutely beautiful with curly blond hair & beautiful blue eyes.
She is very smart & has such a fun outgoing personality.
She is talented in gymnastics.
I know these qualities are gifts & will be assets to her as she grows up.

Anyway, I say all that because I pray that through the many many photos I have taken of her that I will help boost her self confidence for those days when someone says something unkind.
I pray that she knows she is beautiful indeed.
I love all my girls equally just photograph Caroline a little bit more!

Sweet Caroline~~

18 comments:

Jeanne said...

Oh Paige, thanks so much for sharing Caroline's story with us. She is such an exceptionally beautiful child and like I said before, a natural in front of the camera. She really seems to enjoy having her picture taken. Children really can be cruel with their comments and doesn't it just break yor heart when your child comes home and tells you what people have said to her. But your response to Caroline was so wonderful. With such a loving, spiritual mother as you che will do just fine in life. Hugs and prayers to both of you!

restyled home said...

She's perfect just as she is...
and you are a sweet mum, indeed.

Linda

Rox said...

Well, she is just beautiful! What a blessing to have you as a Mom too. The pictures are always so good. Look at her legs in this shot! Just a gorgeous picture and her clothes are darlin too. I love them. I have just gotten into photography. I have always enjoyed it, but have recently taken it much more seriously. I love your blog and am also in the Atlanta area :)I check in here every chance I get.

Kristin said...

You my friend are the sweetest mamma ever. I have to say we "the knudsen fan club" just love seeing pictures of anyone in your family. Caroline's face loves the camera or it loves her, meaning she takes beautiful pics. So there. I have always thought that God will work Caroline's deal out for her good. I just know this! Thank you for being willing to be transparent and just share your heart. xoxo!

Swede at Heart said...

Paige thank you for sharing this story about Caroline. She is such a precious child you can see in the photos. How wonderful that you are using your love and talent for photography to boost her. You are a great mommy who truly "knows" her children. You can tell her I often have looked at her cute short hair style and wished one of my girls would try that style. It is adorable.

jackie carl said...

Your sweet Caroline is simply adorable.

I have been reading your blog for several weeks now. I can't remember how I came across it. The first thing that caught my attention was learning that you had lost your first husband to cancer. I lost my dear brother to cancer, 5 years ago. He was 44. I & my sis-in-law (bro's wife) are still continuing to learn to deal w/ the loss, pain, heartache & life without him. He had/has 4 children.

(I hope you don't mind me "lurking" around).

All of your pictures are beautiful !

Jackie Carl
Marion, IN

paige said...

jackie- do you have a blog or an email i can get in touch with you?
i'd love to hear more of your story.
xo
you may email me directly at
daniel.knudsen@comcast.net

Deb said...

Hi Paige
Thank you for visiting my blog - tomorrow will be the 1 year anniversary of starting a blog, so it was nice to know that someone "new" had found me :-}
Your blog is wonderful - so many beautiful pictures of your family & sweet dogs. Your little girl is precious ~ thank you for sharing your story.

jackie carl said...

Paige,

You are so sweet to address my post.

Thank you for your email.

My email is jscarl@indy.rr.com

Sincerely,
Jackie Carl

Southern Sugar said...

She's just precious. Thank you for sharing such a personal story. May God bless you all as you walk through the difficult times. Your pictures are just so beautiful. But so is her little face. I am sure that will give her confidence too. That and your love and attention. What a beautiful mother's heart you have.

velvet brick said...

Paige,
My heart has so much to say...first, thank you for sharing your story about Caroline. I would never have known she has this condition had you not shared it with your readers. She is a beautiful child and we can tell just from your pictures how confident, happy and sweet spirited she is. It is so not easy to deal with a child's medical situations (my son has a heart valve deformity and my daughter had to have life-saving surgery when she was 4 months old). You are a wonderful mother, Paige. I so respect you.

Secondly, I understand what you mean about other children being cruel. However, I so wish I had Caroline in my class at my school. She would be accepted for everything that she is and embraced by all of our staff and students. I wrote a bit about what type of school I teach at and I'm very passionate about all of us accepting 'all of us' for who and what we are...(if you go to my blog at www.velvetbrickspot.blogspot.com and look at my post titled 'I work at a failing school.' you'll see what I mean about my school. *don't let the title of the post steer your wrong, though

Thirdly, I send you and your daughter and husband and daughters love, prayers and peace. I get so much from visiting your site, the least I can do as a token of my appreciation is to send a prayer to you and your family.

Thank you, Paige, for sharing your story... it is beautiful.

VB
(actually, my real first name is 'Carolyn', so perhaps I'm a little partial to Caroline???) : ))

Jennifer Paganelli said...

What I love about you Paige is you have quite a bit on your plate and always manage to spread goodness wherever you are..that's a gift and you share it so genuinely....so glad you share so openly..Jennifer

Kimber said...

Caroline is simply beautiful and God made her wonderfully special!

Thank you for sharing:)

Kim

Sheree said...

Paige, she is absolutely gorgeous! I love her blond curly locks and her smile. Blessing to your girl--she is lucky to have you as her mom! Keep the pictures coming--she always makes me smile. :)

Dawn-Hydrangea Home said...

Your Caroline is so beautiful and looks like a model in those gorgeous pics you take of her. Let's hope for a cure for this disorder she has!

Jen said...

What a sweet little miracle she is and isn't she just the luckiest little girl in the world to have you for a Mommy and such a soft place to land after the meanness of the world. Jen

Lana said...

Dear Paige, I don't even know how I found your blog.... just browsing from one blog to the next and there you were. I enjoyed reading your posts, the lovely photos, and your talk of the Lord. Then I got to your post about Caroline ~ my heart nearly jumped out of my chest! I have a son, Wesley, who was diagnosed with HED when he was almost 2 years old (he is 17 now). I know exactly what you are going through, the worries about the heat, the explanations about why his hair was sparse and thin, why he didn't have teeth and when they did come in, why some were pointy.... and then the hurtful words from children at school because he was "different", and I remember telling him that God made him this way and he is even more special because of it. You just keep right on the way you are raising your daughters. Your love of them and your love of the Lord will make them the most beautiful, kind, caring, strong, faithful daughters you could ever hope for.

Take Care & God Bless,
Lana

Lana said...

Paige, I meant to ask if you knew about the foundation, NFED. You probably do. It's a wonderful organization. My email is honeysucklelane at hotmail.com if you would like to contact me about it.

Lana