Monday, February 23, 2009

A Little of my Goldie Sadness

Today Goldie and I had a little conversation in the car that was light hearted and cheerful but that made me cry all the same.

A few months ago we found a few bald spots on the back of Goldie's head. I probably wouldn't have even thought much about them or worried that they meant anything except for the fact that my sister, my father, and a cousin all have alopecia -- an autoimmune disease where your body's immune system attacks your hair follicles. Doing a little research I quickly realized that there is not much else that causes your hair to fall out in round patches -- radiation treatments, ringworm, tension hair loss from tight ponytails, nervous habit of pulling out hair and . . . alopecia. None of the others apply so unless it is a total fluke, she most likely does have alopecia. Many people that get alopecia only ever have patches here and there and nothing more. Which would be what we hope for. Some lose all the hair on their body (like my cousin) and others lose all the hair on their heads (like my dad and sister). It is just a waiting game now. Both my dad and sister had patches for many years before losing all of their hair. Needless to say, this has given us a lot of anxiety and stress over our little Goldie. The thought of her losing her sweet little blonde locks, dealing with the trauma and insecurity of being bald, and the unthinkableness of any kid ever making fun of her makes me sob every time I think about it in any depth. My family has been wonderful though (as has Mikes). Knowing somewhat about how difficult it is to handle (from witnessing my sister dealing with it), they have all been praying and praying for her. Praying that she might not lose her hair, and that IF, for whatever reason, she will have to have this trial, that the impact can be softened -- that it can happen in a way and at a time that would be the least traumatic.

I've had mixed feelings about how to deal with it at present. Mike believes (and is likely right) that there is no reason to make her worry when we don't even know that she'll ever lose it. At the same time, it seems like in some ways it might be less devastating if it wasn't a sudden shocking surprise. I've read that children often cope with it better than adults because they are less conscientious about appearance issues, and part of me thinks that if she knew it was a possibility and we were able to just talk normally about it maybe it wouldn't be as bad as it could be if, say, it suddenly got bad in the middle of those rough and insecure teenage years. If it does happen, I would hope she could just be bold and confident -- that she could be unashamed in using it as a mark of who she is and realize the opportunity it would be for her to stand out and influence people who were struggling. That is how my sister is now, but I clearly remember how horrifying it was initially for her and how terrified and humiliated she felt at the thought of any boy she was dating discovering she wore a wig. Oh, but I mustn't type about those kinds of things because then I start to tear up again as I think of Goldie.
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Anyway, I haven't said anything specifically to her, but once, several months back, I just kind of tested the waters casually by saying something about how beautiful she was and how she would even be beautiful if she had no hair. I think that, because we'd been looking at her head a lot, she sensed something in that statement that she otherwise would not have because she immediately said, "But I don't want that to happen! I wouldn't be pretty!" I said, "but Shannon has no hair and she is pretty." "Yes," she conceded thoughtfully, "but I don't think a kid would look much good with no hair." I mentioned how I'd seen a lot of pictures of kids with no hair and that they looked very cute, but changed the subject because I didn't want to upset my little girl who had said, "Still, I don't want that to happen to me."

Then, out of the blue today, as we were driving in the car (it has been probably two months since that conversation) she said, "Mom, if my hair ever does do that -- fall out, I'd like to see some pictures of those kids with no hair so I can see if I'd still be cute or not."

"You'd be so cute honey because you have such a cute face and such a cute round head." I responded casually, "but I can show you those pictures on the computer sometime."

She still seemed interested in the topic so I said, "Goldie, do you know what is fun that some people do if they have no hair?"

"What?" She questioned.
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"Sometimes they just show their cute heads, and sometimes they wear all kinds of cute scarves on their heads that they hook things to like flowers, and sometimes they get fun wigs so that they can have brown hair or blonde hair each day!"

"Well," Goldie said happily, "I wouldn't much like the wigs."

"Just maybe the things wrapped around your head or just showing your cute head?"

"Yah."

"You know what is kind of funny. Sometimes people with no hair get very cold because hair keeps your head warm so sometimes, like Shannon, they wear snuggly little caps to keep their heads warm."

"Or" she said excitedly, "I could just put my hood on!" she paused then laughed, "If I always wore my hood, no one would even know I didn't have any hair!"

"Yah, you could just trick them. That would be silly, but also just showing your little head would be very cute."

"Yah," Goldie agreed, "I would just do that if my head was cold." She gave me her crazy wide eyed silly face and laughed, "'cause I wouldn't want my head to get cold!"

And then we were at our destination. I love my little girl. I liked how calm and happy she seemed having that conversation, but I feel extra emotional again because of it. She is quite the cutey I must say. I've been having a lot of fun giving her a little extra attention with Abe and Daisy back in school. Here was what she was doing today.

video

12 comments:

jami said...

oh nancy, what a hard thing to be worried about .... but also so good that she has beautiful examples around her - especially in shannon. whatever the outcome, whether she one day has hair or not, she comes from a family who loves her and is teaching her already that beauty is more than what's on the surface. i think what you're doing is very smart - little conversations like that probably will help her down the road, and help you feel better about it too ...
hugs and prayers ...

Tia Juana said...

And now I am fighting the tears as they push forth with a sadness for your sweetie pie Goldie. Why must these little angels have such heavy burdens? I wish and wish with all my heart that she will not loose her hair.

Last night for FHE my little Sharktooth gave the lesson on the Holy Ghost and something he said in his simple testimony touched my heart at the time. He said that "when we grieve we are comforted by the Holy Ghost and we don't have to have someone die to grieve, it might just be that we want something really bad and we can't have it and the Holy Ghost will help us to feel better." Okay, what a no brainer is that for someone who has grown up with this knowledge but it is true, I think we save that influence of the HG and knowledge of the atonement for times of tragic death and what have you, when in reality, here you and she have been having this comfort in a very discomforting time through conversations that will one day give her strength. I'm sure you already realize this but be sure to seek out this comfort!

Thank you for such a heartfelt and honest post. God bless.

Tash said...

oh life just goes along happily and then you find a few patches and then you realize...
well Its a good thing she has a sunny little name and a sunny little soul. And its a good thing you are talking about it but just in a casual way
I am so sorry about your sadness!

Catherina and Brett said...

Nancy,
what a hard thing to have to face. I hope that all will be well with you and your little Goldie:-) The thing that I love the most about this Gospel is that it is a Gospel of Hope. And Peace. And Comfort. May the Lord watch over you and your little ones always.
Love
Flodi

Liz said...

Ohhh, sweet sweet little Goldie. I love her little comments to you in the car. You can tell she is already a very strong individual. It would be so sad if she does lose her hair, but Heavenly Father has already blessed her by having those in your family that have already been through such a hard trial around to encourage her and show her how to cope. And she will still be the cutest thing, hair or no hair.

Karen said...

Your Goldie is a little angel. What a sweet, wise little person she is. She is so blessed to have you. So often we forget what real beauty is. Your sweet Goldie, I am certain will always know what the things of real beauty are in this world. More often than not, that is the battle, knowing the difference.

Perla said...

i am in tears, of course. how do little ones have such amazing strength to just calmly have a conversation like that which tears our hearts to pieces? i have so many emotions involved with all of this. i feel guilty. i don't really know why. but i guess because i feel like this should be my trial and no other girls in our family are supposed to suffer it and maybe i am not doing something right to learn enough from the trial if others have to have it too. i don't know. but i promise you that i pray that i will stay bald forever and eternity if goldie can keep her locks. but of course only the lord knows what trials we need to become the people that we need to become and also, at this point in my life i am truly able to be grateful to have alopecia for how it has helped me understand how i am and define myself, beauty, and others. anyway, i love you and i love goldie.

Krista said...

Goldie is adorable. It sounds like you are saying the right things. Good job, mom!

Rhonda said...

Poor sweet Goldie. Your conversations with her about this make me want to cry. We are praying so hard for her! I am so glad that she has such an amazing personality and such loving parents!

marzee said...

I'm sorry Nanc - I can't imagine what it would be like to try to strengthen a child through something like that - when you yourself need the strengthening as well. I love you all so much - and you will be in our prayers.

PS She is beautiful - just like her Mommy.

Nancy said...

Thanks everyone for your very sweet and hopeful comments!

Mugsy said...

Hmmmmm I am so torn. I love my little Golds. I just can't imagine being OK with any hardship having to face her....You are such a great mom nanc. I love the way you handled the conversation.

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