Vitiligo and Spring Break – Where We Are 4 Years Later

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It’s been 4 years since our daughter (the middle tartlet, or MT) was diagnosed with vitiligo (read here for my initial reaction). Vitiligo is an autoimmune disease that attacks the pigment in the skin, changing the body’s normal skin tone to white. There really is no rhyme or reason as to how quickly or where it spreads. My husband also has it (it is hereditary), but his hasn’t spread like our kiddo’s.

We can never tell just how much MT’s vitiligo has spread until she has a tan. Being that we are in the midwest and have 6 months of winter, her summer tan fades – mostly her face – and her vitiligo is hardly noticeable.

Well, this past week, we escaped the wintry landscape of Chicago and headed to sunny Florida. I knew, regardless of how diligent we are with our SPF 50, sun hats and rash guards, our olive-skinned babe would soak in the sun and we’d see how much her vitiligo has spread this year. It seems that every year, there are 50% more spots than the year before and this year is no different.

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I usually feel a bit uneasy, not knowing how she will respond to seeing the difference. Will this be the year she becomes self-conscious? Will she still love her spots? Will she ask how to cover it up? I always take my cues from her, if she’s happy, I’m happy. If she’s sad, we talk and try to find a solution. So, this year, after a few days in the sun, MT sits next to me and we start to talk.

“Mom, did you see my new spot on my hand? It looks like a dog.” – MT

“Let me see. Oh, I like it! What else have you noticed?” – me

“My hands are pretty white. More than before.” – MT

“I see that. How do you feel about that?” – me

“It’s okay. I like my spots.” – MT

“Have you noticed them any place else?” – me

“I have more on my feet and legs. I still have my happy face though. Does it look like I have make-up on my eyes? It’s white on top now.” – MT

“That happy face is my favorite still. No, it doesn’t look like you have make-up on. I hardly notice it. Does it bother you?” – me

“No, not really. I have white under my nose now too.” – MT

“You know, you can always talk to me about this. If you find new shapes, if you are happy or sad.” – me

This led to a conversation about what could be done, if she wanted a change. I explained that we could do a sunless tan and that it was a temporary thing (she doesn’t want to lose her spots – it is part of who she is). I let her lead the direction of the conversation, never wanting her to think she needs to cover her spots or be ashamed of how she looks. At this point, she’s still happy. Still loves her spots on her 8-year-old body. Still embracing the idea that she is a messenger, and will teach others about vitiligo.

I tell you what. She is my strength. In a society so set on looks and fitting in, she embraces her differences and knows that she is beautiful inside and out! When asked about her spots, she explains that “it’s just my skin. Some people have moles or freckles and I have spots.” Her self-esteem has never been affected! She always wants to perform in front of people – at school in talent shows, on vacation – singing karaoke or dancing poolside – she is comfortable in her skin. For that, I am grateful!

I’ve been asked about different treatments we’ve tried, and, to be honest we haven’t gone out of our way to change her spots. We went gluten-free for a bit, wondering if she had an intolerance and if so, if we took it out, would the rate at which her vitiligo is spreading slow down. It did not, though we did notice a marked improvement in her attention and angst in situations (that’s another post all together). We tried steroid cream – nothing. We notice that if she does burn (which we do NOT want to happen), her skin does re-pigment, though only short-term – which I guess would mean she would respond to UVA treatments (we aren’t going there… at least not until she lets us know she needs a change…)

Do I get sad? Sometimes. I know that she is still in a great age of acceptance. I think about middle school, bullies, prom, college… She’s asked me if she has children, could they have it too – and I tell her yes. I’m not sure how she feels about it, but it is something I think about too. Never for a minute do I want her to feel inferior, not beautiful or less than. I know there will be jerks out there who will point or say something insensitive. I worry. But then, I’m reminded to take one day at a time, to look at our confident girl and follow her lead.

Vitiligo takes away pigment, but not the upbeat, positive attitude of our 8-year-old.

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Today’s “Preschooler Approved” Activity

Finding activities that are fun and engaging for kiddos and parents can be a bit tough at times. Today, my little guy and I take to the kitchen for something we both enjoy!

What are activities that are hits with your children? Do you have a blog and want to link up? If so, post it in the comments – we are all in this together!

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Moms of Preschoolers Support Group… Week 2

(Today, I thought I’d try a v-log. PLEASE bear with me on this! I’m not used to seeing and hearing myself in this format, but wanted to try something a bit outside of my comfort zone.)

Hello fellow group members! The weather in Chicago is improving and we are getting spring fever! But, as the snow melts (slowly, that is), we are left with a muddy mess. So, we’ve been trying some creative ways to get our energy out while being engaged in age appropriate ways. I hope you’ve found some fun things to do with your kiddos! I can’t wait to hear them!

So, this weekend, we had some great containers in our recycling and decided to make some musical instruments with them (since my little guy is all about being loud and performing for the family). We made maracas by putting dried lentils and noodles in lidded containers, a guitar with rubber bands and an empty box and a drum with anything that could be banged! We were grooving to our up-cycled music! Woo hoo!

The sensory part of this activity was the most fun and engaging- scooping, pouring and running fingers through the lentils and dry noodles. In fact, this was so fun that we’ve created another activity with a large plastic container (think plastic shoe box), cups, scoops, bowls. I love when one activity turns into two!

So, what activity was a winner with your preschooler this week? Do you have an idea of something you want to try?

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Support Group for Moms of Preschoolers, aka Activities to Keep Them Engaged

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Love this boy! Always keeps me on my toes… ALWAYS!

Hi. My name is Ann and I’m the mom of a 3 year old preschooler. (I imagine you all say, “Hi Ann.)

There are days I feel like there needs to be a support group for moms of preschoolers. From the time my little man wakes up, until he goes to sleep, he is going like the Energizer bunny. Don’t get me wrong, I love his energy and spirit, but this old mom is running out of activities that keep his attention for more than a couple minutes.

As a mom of 3 and former teacher of 12 years, I have met my match with this little guy. Activities that I thought were brilliant were scoffed at. Art projects, ha! He laughs in the face of them. He is not like his sisters and this mama needs to broaden her bag of fun!

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This is moments before he decides to take the tree off the paper and throw it and the decorations on the floor and head to the toys. No art for him.

So, I’ve decided to post activities the little guy and I do that are a complete success! In hopes that someone else out there will find something they can do with their kiddo!

I’m hoping this won’t be a one way deal. Please share activities that are hits with your kiddo! Have a blog post? Link it in the comments! Know of someone who needs the Moms of Preschooler support group? Share this with them.

Each Monday, I will post a new activity that is approved by the tiny tartlet and I hope you share yours too!

So, today’s activity is one we’ve done so many times this winter, I’m surprised he isn’t tired of it yet. But, I guess the idea of bringing snow inside is a pretty awesome one. Here’s the deal…

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What you’ll need:

towels, couple of rimmed baking sheets, a large container of clean snow, beach toys, plastic toys – anything fun for snow play!

The only rule I had, keep the snow in the baking sheets or in the large container.

Place the container of snow of a rug or towel, place the baking sheets on towels too… then let the play begin! My little guy, who likes to go from activity to activity every 5 minutes, played for over an hour in the snow! The clean up was easy too. Use the towels to dry off the toys, dump the snowy water outside and viola! Play time is over!

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Now, if you aren’t in a snow covered area, I guess this will be a little difficult. But, don’t leave just yet! I’ll post another activity next Monday and would LOVE to know what you are doing with your kiddo! Leave a comment, link and please share with your friends!

(I apologize for the ads below, they aren’t from me… I need a change!)

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Valentine Family Tradition

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There are so many ways to show the people in your life that you love them, but, the ones from the heart are what you remember forever! In our family, we have a simple tradition on Valentine’s Day to show each other the love. We simply take a cutout heart for each family member and write the reason why we love them or think that they are special. Even the little guy (3 years old) gets in on it. We ask him why he likes being with his sisters or what he loves to do with them and then write it down in his own words!

The night before Valentine’s Day, we sneak in to each kiddos bedroom and decorate their room with the hearts. They love waking up the next morning and reading all the messages about them. Talk about filling up your bucket! The kiddos start their day filled with love!

Now, you could stop there… but DON’T! You can buy an inexpensive journal or notebook for each family member and place the hearts in them along with the year. We all love seeing the pages fill up year after year, but the absolute best part is when you see the kiddos pulling out their journal when they are feeling blue, need a pick me up or just because! What a wonderful way for them to look back and know that they are truly loved by their family. Happy Valentine’s Day!

(Check out my 30 seconds on 30Second Mom!)

Do you have any special Valentine traditions? Any tips to share the love? I’d love to know what you do to help those in your family feel special!

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