Wednesday, October 31, 2012

Happy Halloween

A regular post coming tomorrow. 

For now, there is music blasting, a crock pot simmering and two excited sweet littles whose mama loves holidays.  We have a house full of friends we love tonight, and I couldn't be happier.

Happy Halloween.  Have fun and stay safe tonight.


Our Halloween Card this year:

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(back):
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Monday, October 29, 2012

F.A.Q.: Down syndrome

The following post is in response to this month's earlier post, dealing with Down syndrome and welcoming your questions. We are honored to be able to share the things we are learning about Down syndrome on this blog and invite you to join us in making efforts to raise awareness for the value and acceptance of individuals with Down syndrome in our culture.


Q:  Are there different degrees of Down syndrome?  Is it a diagnosis that has a "spectrum?"

A:  Down syndrome affects every child differently.  I look at this no differently than the fact that every child, regardless of chromosomal make-up, develops and learns differently.  Just as there is no test to determine what Lainey will know and be able to do at thirty years old, there is no test to determine what Nella will be able to do.  Bottom line, as always:  We take one day at a time, celebrating our children's unique growth and ways of learning and providing support in the areas where they need it.

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Q:  What day-to-day (or weekly/monthly) things do you do that have to do with Down syndrome?  Do you do therapy?  Is there a "plan?"

A:  We currently have in-home therapy once a week for physical therapy and occupational therapy.  Nella's received these therapies since she was three months old.  In O.T., we are currently working on varying play with familiar materials (taking the same toy and using it in different ways), puzzles with no picture matches (having to match shapes), lacing cards, using crayons and pencils and imitating symbol strokes (line down, line across, etc.), and beginning to use little scissors. 

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In P.T., we are working on jumping, stairs, lots of balance exercises (uneven surfaces), tricycle, ball throwing, catching, kicking, etc.  For both P.T. and O.T., I love that our therapists incorporate real life activities as much as possible.  I've walked into our kitchen before to find our O.T. and both girls in aprons, working on pouring, measuring, scooping, stirring, etc.  I am thankful for our resources--trained care-providers who support our everyday efforts with their expertise.  And I am also aware that, as parents, our role in educating our children (typical or not) and providing them experiences for their skills to evolve is the most critical element in their development.

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Q: I am curious about Nella's speech.  What does she say?  Does she talk a lot? 

A:  Again, every child develops differently and at varied paces.  While I am happy to talk about Nella's speech progression and what we do to promote it, remember that her verbal development isn't necessarily directly related to our strategies; most of it is due to genetics just as every other child's ability to do certain things is related to the intricate structures within their brains that make them who they are. If you see a child with Down syndrome who isn't as verbal, it certainly doesn't mean his/her parents aren't using speech development strategies at home.  One of the physiological traits of Down syndrome is short term functional memory which means language, listening, following instructions and understanding consequences are more challenging for our babies. When I find I need extra help in understanding these issues and how they relate to parenting Nella, I always start by asking trusted friends within the Down syndrome community who are further along on this journey.  They share with me the things that worked best with their children and direct me to other resources that can help. 

Also, I am not a speech therapist.  The things I share that I've found to be succcessful are only based on my own experience with my own kids.

Nella has recently made some noticeable strides in speech, pointing out pretty much everything she wants and using 3-4 words to describe it ("Mama, pretzels please."  "Mama, shoes on.  Walk, please."  "Lainey, come find me!").  I would estimate that she has around a 100-word vocabulary of expressive language (more for receptive) but is continually learning new words as we introduce things to her and ask her to repeat us.  We talk to her just like we talked to Lainey when she was Nella's age, describing all of our routines as we perform them, asking Nella lots of questions and giving her time to respond ("Nella, do you want to go bye-bye to Target?  What are we going to see there?  Do you want to bring your grocery cart?  Go get your shoes on, please.").  We are currently focusing on a lot of everyday tasks and giving Nella directions, inviting her to be part of the conversation.


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For example, for bedtime we'll ask her to pick out pajamas, go get her toothbrush, wash her hands, etc. and she's very good at repeating our instructions and running along to follow directions.  She's currently loving the opportunity to respond to questions with words, such as, "Nella, what pajamas do you want to wear, the pink ones or the red ones?  (Nella says "pink.")  "Oh, pink.  Good choice!" 

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We speak to Nella like we speak to Lainey.  We make jokes, we use big words and complex sentences, and we are constantly talking to our kids, even if they might not understand everything we say.  While flash cards and sit-down word instruction is fantastic for early literacy (which is important!), I find that the most important thing we can do in engaging our children in conversation is to talk, talk, talk to them and give them as many opportunities to express themselves and respond to verbal cues as possible. 

I'm quoting my dear friend, Elizabeth (physician, D.S. mama and researcher) on this issue: "Nobody can ever promise you that any sort of therapy or intervention can make your child into a super-talker. Or they can promise (some folks do, and it's usually expensive.....) but they're not telling you the truth.   Might be that you work as hard as any mama could possibly work, and your child still isn't at the level you would want them to be.  But I can promise you this:  if you DON'T talk with them, don't expose them to language and writing and music and listening, they aren't going to make progress.   End of story."

Success for us is not measured in how many words Nella can say.  Verbal development varies in so many ways in children, both with and without Down syndrome.  We have friends with children who communicate in other ways, and it is always an inspiring thing to see the ways in which parents and children lovingly communicate with each other and with the world around them, even if it isn't with words.  I am both grateful for Nella's progress and yet aware of others' circumstances and continually learning from those around us.

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Q: Our 10 month old daughter has Down syndrome, and I wonder when I should talk to our 3.5 year old son about it. I feel like he wouldn't understand it now, but I don't want him to be unprepared if someone outside our family says something insensitive to him about his sister. Any advice?

A:  Families choose to talk about Down syndrome with their children in different ways.  For me, it was important to at least give Lainey a basic age-appropriate description early on because I wanted her to know why Nella had therapists coming to work with her and why we decorated wagons and wore "Nella's Rockstar" t-shirts for the Buddy Walk.  We started with what we know--reminding Lainey that every child is different.  We talked about children we've seen or know who have wheelchairs, wear hearing aids, have peanut allergies, take medicine for asthma, etc.  We talked about all the things that make them special and unique as well as the things that make Lainey special and unique--she has blond hair, she is tall, she is really good at drawing, she has a hard time with jumproping, she knows lots of words but is still learning to read, etc. With that introduction, we told her that Nella has things that make her different too.  She has something called Down syndrome and it's part of her body and who she is.  With Down syndrome, we explained, sometimes it takes Nella a little longer to learn things and she might need extra help to do the things that come easy for Lainey.  At Lainey's age, this is a sufficient explanation and, to be honest, I don't know that Lainey will ever look back and think "I remember the day they told me about Down syndrome."  Learning about her sister's differences is a gradual process and part of Lainey's everyday life, just as learning about her own differences is or those of the people around her.  Mostly, we look for opportunities to teach all of our children about the greater theme of compassion and recognizing people for their unique abilities and character.  We do this through modeling behaviors, reading books that introduce themes of acceptance, and talking to our children when necessary about how we treat people around us.  It's such a wonderful challenge we all share in parenthood--establishing the foundation of character for the adults our children will be someday.

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Q:  I am curious about what you think about juggling politically correct terms.  When my 93-year-old grandma recently said "retarded," she didn't mean anything offensive or negative but was just using the terms she knows. How important is it to say the politically correct word and how much is about the tone/attitude being portrayed?

A:  There is a kind way to inform people about the use of the word "retarded," and there is a holier-than-thou way in which you can make an uninformed person, who just needed a little information, feel horrible.  I follow my instinct on when and how to address people when they use the word "retard" or "retarded."  While I support politically correct terminology, I've never been one to jump into conversations, constantly correcting people.  However, I do feel it is important in kindly educating people about the way the word "retarded" used loosely affects families of children with disabilities.  I'm also more sensitive to other words casually thrown around that suggest negative stereotypes, having "worn the shoes" of a family affected by a slang term.

I personally grasped my relationship with the word retarded early on, described in this post:  "...the word “retarded” comes from a Latin word that means “to make slow.” In music, a variation of the word refers to a beautiful “slowing down” of pace at the end of a composition. And, if you remember the story of the tortoise and the hare, you’ll recall who won in the end. I'm just sayin'."  The understanding of this word's true purpose and definition, and the separation of my child and who she is with any words someone might use to describe her, has helped me keep "retarded" from being too personal. With that said, when I educate people about this word, I remember that I am representing not only my own child but many others in this community. 

Note: In 2010, Rosa's Law was passed, which is a United States law that replaces the words "mental retardation" in legal literature with the term "intellectual disability." 


For more information about Down syndrome, please see a list of specific Down syndrome resources available on NDSS website HERE.

As always, thank you for wanting to know more about Down syndrome and for being part of our journey and that of many others, just by reading. 

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We're happy to welcome back Tea Collection as a sponsor this month.  I love this company not only for their well-made products but for their mission in using "uniting the world" as inspiration in designing their clothing.  As co-founder and chief creative officer, Emily Meyer says, "Travel opens our hearts and minds. The clothing we create at Tea transforms the foreign world into a smaller, friendlier and more familiar place. We believe that we bring a little bit of that world home to you. Everything we create - our products, images, words and ideas - is inspired by going there and being here. And by our passion for exploring different cultures. We are awed by the unique beauty and diversity of people around the world. As we celebrate and share our discoveries, it reminds us how small the world is and how alike we all are."  Can I get an Amen?

Check out Tea's current collection of Nordic-inspired designs.  All sale items are currently 20% off (until October 31st) using code TRICKORTREAT.  We love to check out Tea Collection's destination inspiration page with beautiful printable coloring activities as well (color and frame this owl print!)

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On Nella: Lunefeld Playdress (currently on sale and an extra 20% off with code TRICKORTREAT) and Cozy Rib Knit Leggings

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If you're local, come join us at Fred's (on Immokalee Road in the Sam's plaza) tomorrow night. We're gonna party like it's 1999, and we're wearing costumes. As the Black Eyed Peas would say, tomorrow night's gonna be a good, good night.

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Friday, October 26, 2012

Easy Pumpkin Carving Party

Our Pumpkin Carving Party:

Proof that parties don't have to take a lot of effort or money.  The idea for this little party came two hours before it happened.  The only thing we bought was donuts, cider, some paper plates & napkins and a pumpkin carving kit. 

We took an empty nightstand from our garage into our woods, added a couple blankets and laid our treats out in pretty wood dishes.  Pull a few pinecones and sticks from the ground to decorate and, voila...a magical party.

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Lainey was completely surprised when she came home from school. The woods and her friend were waiting for her.

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For easy clean-up in the woods, we also brought a garbage bag for disposal, a bowl for pumpkin "guts," and baby wipes to clean hands.

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Gourd Powers Unite.

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Friday Photo Dump:

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And your #enjoyingthesmallthings photos. So happy to return to this as it makes me happy to see your images!  (If you use Instagram and have a photo that makes you happy, share it by using the hashtag #enjoyingthesmallthings. Yours may be chosen to be shared in a Friday post.)Photobucket

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And a little sponsor love for Deb Oliver Origami Owl Lockets.  She's received a great response so far--thank you!  Her personalized charm lockets make a great addition for the holiday wish lists.

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Have a wonderful weekend!

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Thursday, October 25, 2012

When Fears Come: Hallmark

This post is a Hallmark sponsored post. I am being paid by Hallmark to write it, but all writing, ideas and opinions are mine. Thankfully, Hallmark and I share the same idea--that little moments are to be celebrated and that good people, good efforts and good intentions deserve a spotlight. See Hallmark Life is a Special Occasion for more details, like them on Facebook, and/or sign up for their e-mail messages HERE.

A few nights ago, I lay down with Lainey and rubbed her back as she fell asleep. With our bodies sidled up against each other and her head nestled into my neck, we talked about the things we talk about at night—school, upcoming events, funny things that happened during the course of our day. Conversation slowly fizzled as she gave in to her exhaustion, and I was just about ready to slip out of bed and join Brett in the living room, convinced from Lainey’s silence and steady sighs that she was asleep. And then, in the dark, her little voice spoke up.

“Mommy, Tyler* said today that when you grow up, you die. That’s not true, right?” Her voice broke with that last question which was really more of a plea than a question—please say no; we don’t die, right?

Without much time to strategize my response, I replied as most parents answer these questions—off the cuff, from the heart, and as best as we know how. I brought my face close to hers so she could see my reassuring smile in the dark, and I swept her hair from her forehead as I kissed her.

“Baby, everybody dies at some point in life. Most people live for a long time, just like my grandpas and grandmas. Remember I told you how my grandma and both of my grandpas died after they lived a wonderful life and had babies and then had grandbabies and watched them all grow up?”

Lainey immediately started to cry. “No, Mommy,” she argued, “No, they don’t die.”

Oh, this wasn’t going to be easy. I realized at that moment that death was a new concept to her, despite the fact that we’ve flushed a number of fish—God rest ‘em—down the toilet and have casually discussed the cycle of life through stories of grandparents and the occasional children’s book with an orphan character. But this time, it was making a little bit of sense in her growing five-year-old brain, and her comprehension of this topic brought new fears.

I could tell she was distraught. Her voice wavered as she continued: “And Gabby* said that you can die even if you don’t grow up. She said you can die if you get really sick. That’s not true, right?”

Oh, sweet mother of I-don’t-know-how-to-answer-this. And so again, I took her little question, hugged it tight and did my very best to gather up a meaningful, honest yet child-appropriate response.

Serious questions deserve serious responses, but at that moment, I knew my girl needed security—some ventilation through the heavy fear blanket that was quickly smothering my little kindergartener. So I laughed—a soft, gentle laugh.

“Have you ever been sick, Lainey?” I asked.

“Yes,” she answered.

“And did you die?” I asked.

“No,” she replied.

“Lainey, Gabby is right in that sometimes that happens. But it’s not something I want you to be afraid of. People get sick all the time, but we have so many things that help us get better—doctors and medicine and hospitals and good food and rest.”

“Mommy, you forgot to do oils today,” Lainey interrupted. “Will you go get them?”

I knew what that question meant. We use essential oils to help us “not get sick,” and my poor girl had now associated that benefit with “not dying.”

I slipped out of the bedroom to get the oils, giving her a little space and thankful for the opportunity to give Brett a quick rundown of our conversation. His response was a little different. Because Brett was terrified of death growing up. He doesn’t know why, but he remembers how scared he was and even his mom reminds me that it was a very difficult concept for him as a child.

“Please don’t tell her too much,” Brett pleaded. “I don’t want her to be scared. You have no idea how much the fear of death plagued me as a child. She’s five, Kelle. She’s too young to be thinking about this. Change the subject, please. Tell her everything is going to be okay.”

His last statement sharply emphasized a desire most of us share as parents: tell them everything is going to be okay. As elusive as that promise is, that’s what we’d love for our kids, right? A fearless childhood and the assurance that everything is going to be okay.

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I so understand Brett’s desire—I mean, it’s my desire too—and I love how much he cares about the little minds of our kids. The fact is though, we have no guarantee in life that everything is going to be okay, and more than assuring my child that life is going to be dandy, I want to embrace every drop of good fortune we have while equipping my children with the tools to handle their fears and hardships.

Brett and I talked for another minute, uniting our approaches before I returned to Lainey and concluded our important conversation. I thought about a few things before I continued:

A) My goal is not to take away her fear of death. Death is scary. I think we all are, in some way, afraid of that great unknown. We don’t want to die when our kids are still young, and we certainly don’t want anyone we love to die either. It is natural and completely understandable that a five-year-old would be intimidated by this new concept. I want to acknowledge her fear.

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B) What does my child think death means? While I didn’t necessarily have to address the depth of death on this particular evening, I realized that we would need to talk more about what death means in the coming months. This definition means different things to different families—to many, incorporating faith and afterlife. Faith is important to me and my family, and yet because of my past religious history, it is also critical for me to live faith and breathe it to my children in a way that embraces different ways of thinking; a way that encompasses questions and uncertainties, and never a definitive “this is the way it is” or “here’s a crutch for your fear.” Faith does bring a lot of comfort to the concept of death for me, though. And while I don’t know all the answers—and I won’t pretend I do to Lainey—I will share my ideas and dreams with my children and the fact that I believe that death is not an end.

C) Brett is right about Lainey being only five. I don’t believe in telling your children things that aren’t true just to alleviate their fears. However, I think there’s a fine line between being honest with your children and talking to them like adults. They’re not adults. Psychologically, there are clearly defined reasons why we don’t present adult concepts at adult levels to a five year old. Every child is different as well.  We embrace our children's personalities when we talk about big things, and knowing Lainey and how her little brain works will guide us as we approach more of these challenging topics as she grows up.

D) I know families that have had to present the hard truth of death to their children because they experienced it first-hand—mothers and fathers, sisters and brothers. They too wanted to protect their children from knowing the depth of death’s meaning, but they didn’t have a choice. In some way, I want to honor their story and heartbreaking circumstances in the truth I present to my children. I don’t know how I’ll do it, but I think about this fact as I begin to knit together lessons for my family in my head.


I returned to bed, massaged sweet-smelling oil into my girl’s feet, and cuddled up next to her, relieved to see she was smiling, relaxed and distracted.

“How many more days until Halloween?” she asked.

I smiled and hugged her. “Eight more days. Are you excited?”

“Yes,” she answered, smiling. “I want to go to sleep now.”

And so the two of us tangled our arms together and repositioned into comfier hollows in our pillows, our discussion a thing of the past for tonight and yet a door to the future. There will be more talks of fear and death. And while I hope that the searing truth of this concept keeps its distance for a long while in our family and with those we love, I know that years of time will eventually deepen my children’s understanding of the cycle of life. To prepare them, I will do what I do every day. I will love my kids.

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I will teach them to be grateful for the wonderful things around them. I will encourage them to communicate their fears and questions with us, and I will be responsible with how I reply. I will live by example—making choices to be happy, to be compassionate to those around us, to educate myself and my family about the people of the world and their stories, and to embrace the sadness and unfortunate events in life with honesty and strength to overcome. Today we have so much to be grateful for, and there is comfort in recognizing that fact.

Fear isn’t a pleasant emotion, but it exists and it can certainly motivate us. How do you embrace your children’s fears? Do you discuss death and illness and tragedy in other places of the world with your children and if so, how to do you present that at an appropriate level? Hallmark and I would love to hear your response. Please be considerate of other families’ ways of addressing these topics. Enlightenment comes with an open mind.


To see other Hallmark posts on this blog, click HERE.

*Having entered the age of school and more complex social settings and topics, please note I’ve changed the names of Lainey’s classmates. This gets a bit more challenging as our kids grow up, and we embrace the challenges and changes that might come with blogging about our life.

Wednesday, October 24, 2012

In the Land of Honey Boo Boo

About an hour ago, in Aisle 12 of Target (the one with the donuts), I decided that two hours was about enough time to finish a blog post and throw together an impromptu fall pumpkin carving party in our woods.  What follows is a frantic pregnant lady running through Target, throwing napkins and cider and pumpkins into her cart and making random phone calls that sound like, "Hey, want to come to a party in about two hours?"  And then I fly home, unload the trunk and yell for Brett to haul that nightstand thing that's been sitting in our garage, waiting for a Craigslist post, out into the woods. 

"Why?" he asks. I don't know why he even bothers asking anymore.

I carry a couple of grocery bags through the garage and don't even bother looking up. "Because I decided last minute we're having a little pumpkin party.  In an hour.  I'm going to surprise Lainey when she gets home from school."

"Can't you just use a card table?" he asks, dodging entirely the whole "You're having a party in an hour?" conversation, even though I know he's thinking it.

"When I have a beautiful empty nightstand just sitting here?" I answer, flashing a smile that says "you know you love me, right?".

And then he pulls out the dolly and purposely bangs it into things, trying to make it look like the job is a lot harder than it is.  And he groans a lot while moving the nightstand (and also supresses laughter; he knows he's exaggerating and that is very funny indeed).  Because that's how we roll, and our marriage flourishes accordingly.  Ultimately, we will both be smiling when Lainey comes home and is surprised to see a little fall wonderland laid out for her in the back woods.  And then I thank Brett for all that exhausting effort of rolling the empty little dresser out to the woods, of course also making the job sound a lot harder than it was because that's how we roll...and our marriage flourishes accordingly. 

(left post to have a party, it was lovely; returning now)

Where was I?

Happy.  I was happy and I was smiling because that's what October does for me.  I try to swallow the enthusiasm just a little because sometimes girls getting way too excited about wearing rust colored tights with fringey boots and proclaiming gourd-loving expletives annoy people.  I don't try to be annoying.  I just really like this time of year, and suppressing that joy is like trying to stop a bad case of hiccups or not laughing while trying to learn the moves from the Gangnam Style video.  Not possible.  And so, yes, rust colored tights today.  A hat.  A fall fist pump.  And a little gangnam style gallop. 

We've been crafting. Like the wall hanging I made for the little fox's room, from a piece of Birch bark I brought home from Michigan this summer.  Okay, that just sounded look "look at the block I just whittled for my kid from a fallen tree we planted thirty years ago" and I didn't mean for it to.  It was a small piece of bark, and it's been sitting on my dresser since July.  To compensate, let's just say the paintbrushes I used were hard and dried up and I'm sure the paint was made from some non-organic chemicals, imported from China.  But still...cute, right?

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In celebrating fallish things, Heidi and I set out on an adventure this past weekend. It involved an hour and a half drive to Hunsader Farms in Bradenton, Florida.  I love doing things with family.  I love when Brett's by my side. But sometimes we laugh that friend adventures, especially when they involve long drives and schlepping kids through very crowded grounds that are a bit like--how did Heidi put it?  Ah yes, Honey Boo Boo Land--are easier to enjoy when you're not worried about your husband wanting to wrap it up.  We girls?  We rock the land of Honey Boo Boo.  We live for the bluegrass bands that show up every year at the Boogie Barn.  We take pictures of our corn-in-husk treats like we landed upon a rare flower. And, after hours of pumpkin festival fun, we head out to the mammoth parking lot, pushing strollers of tired kids full on corn dogs and fresh-squeezed lemonade, and we smile and say "That was fun."

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Hunsader Farms Pumpkin Festival 2012. Pumpkin Festival--I quite love that phrase.

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Nella braved the haystack maze all by herself, but every time she made it half-way, she just turned around and ran back to the beginning, smiling like she aced a marathon.

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It's a dusty place, Hunsader Farms--the kind of dust that coats your clothes and blackens your kids' feet after hours of walking (we learned the first year, don't wear sandals). But it's also the kind of dust that catches the sunlight and creates a nice natural toaster filter, if we're talking Instagram terms here. And the dust and gravel and Honey Boo Boo crowd feels just about right when you're walking from the corn dog stand to the cider one, and you hear a trio of banjos playing Sweet Home Alabama. And you look toward the Boogie Barn and see that every musician is wearing overalls and they all look like Santa Claus, except with longer beards. And you get to the pumpkin tent and you forget it's really a tent because your kids don't even notice the canopy overhead but rather start zig-zagging through long rows of pumpkins, stopping at the small ones--because they always love those itty bitty baby pumpkins.

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Long live the love of fall. And rust-colored tights. And dragging nightstands to the woods for special pumpkin carving parties. That's what I like to call...Oppan Gangnam Style.

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I sometimes preview these posts with Brett before publishing. Tonight I rattled off the whole "hey, I wrote about you dragging the nightstand out to the woods and making it a bigger deal than it was; you cool with that?" And he said, "Yes, but when are you going to blog about the time I rescued you from the drunk in San Diego? I was a hero, and I've been checking your blog. You never told anyone about that. That's an awesome story." So perhaps, along with photos of our little party, I'll share in a future post a random story about how my husband saved the day and rescued me and a friend from a drunk guy in the park. My brave hero.

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The delightful Casey Wiegand is returning in sponsorship this month, bringing her style, her art, her inspiration and her sweet words to readers.

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In addition to A Little Artsy, her family studio in Dallas, Casey shares her creativity, stories, recipes and inspiration on her blog.

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If you haven't checked her out lately, her words and photos are a treat.

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Hallmark post on children's fears (and a recent conversation with Lainey about death) up next. And fall parties. And returning to your questions about Down syndrome and Nella

(Forgot to share this. Still makes me cry to see these things in print and so honored to be a part of Parenting Magazine's efforts to raise awareness for our kids. )

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Parenting Magazine, November Issue.  Available on newstands now.

Have a wonderful evening.

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