Julian’s Story |Apraxia Awareness Day

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These infographics are helpful. But, they’re definitely overviews. They’re a list of some of the facts. That’s good. We need facts. But, the reality of life for a little one affected by Apraxia and the reality of the lives of their family is far less simple than this nifty, sharable page would lead you to believe.

Our Julian was diagnosed with Apraxia at age 3. He’s now just shy of 9 years old.

Here is a bit of his, and our, story…

When Julian was born, my world was lit with a bright light, full of possibility. This sweet baby boy, placed into my arms at 3:00 pm on June 23, 2006, was a new day. He was a new way. For me, for his Daddy and for his brother.

I remember in the weeks just before giving birth to our second son, I felt afraid. I felt panicked, really. Two? TWO?!? Two of these little humans? In my care? Always, all days?? Panic. I felt inadequate, unable to keep up with my one energetic toddler most days. How on EARTH was I going to have ANOTHER?

But, then… he was born. And he was home. And he was just… ours. And he was perfect. I remember sitting on the couch, balancing my newborn and my toddler on my lap, thinking “I am a mommy to two.” ❤ And I breathed and smiled. And I knew we would be okay.

And so began our journey as a family of four. Many days, so many days together. No days were all good and no days were all bad, but rather, everyday was like a splatter painting of thousand colors, flying freely and landing where they may, creating a messy, colorful, one of a kind day, each and every day.

Micah loved his brother, Julian. Once he figured out he was staying around, he warmed up to him and it wasn’t long before it was all kisses and (“gentle, gentle!”) snuggles. Julian adored Micah. Adored. Once he was mobile, there was no keeping him from following his big brother’s every move, from finding a way to be wherever Micah was.

We were young parents, a young family. Our boys were silly and loud and smiley and frown-y and we didn’t have a clue what we were doing with them most of the time. Micah ate chicken nuggets everyday because I couldn’t get him to eat anything else and it didn’t occur to me to read a parenting book about the matter until (a wiser) someone handed me one and even then, the ideas in it completely overwhelmed me and I heated up another serving of chicken nuggets. Julian ate everything I put in front of him, because I really did put everything in front of him after I realized that I had singlehandedly turned Micah into a picky eater. Erik worked long, hard hours and he did everything he knew to do to be good to us, his wife and his boys. We went for walks, we ate too much fast food, we hung out at my parent’s house every weekend. It was a good life. A simple and good life.

Why am I telling you all of this in a post that is meant to be about Apraxia Awareness Day? Because… these disorders, the many disorders that have names like Apraxia and Autism and ADD and Sensory Processing Disorder and on and on… These disorders that bring red flags for the pediatrician and a serious, sympathetic face from her as she asks you way more questions than you’d ever been asked with your first baby at his well check-ups. Then appointments with specialists, then tests and evaluations and scores that get you a diagnosis, or no diagnosis and all you want is a diagnosis sometimes and then  you get a diagnosis that you know isn’t right and then… then, you just want to go back to that hospital where that baby boy was placed into your arms, that new day. That day when all the possibility in all the universe was placed into your arms with him. And you want to start all over because surely you’ve done something wrong. Or you missed something. Or… maybe you just want to live it all again, all the simple days that you didn’t realize were simple at the time. Those days were so good and you didn’t even know it. And now, here you are, in this mess of paperwork and questions,  your Grandma on the phone asking if your baby boy, your sweet baby boy, will ever talk. Will he? Will he ever speak words to us?

I’m telling you this, because behind every diagnosis, every disorder, is a person. And a life. And a voice. And a family. And a journey. And behind our diagnosis was a whole lot of hope and faith and believing.

I’m telling you our story, because from my point of view, people care a lot more about other people than they do about a disorder, a disease, a word on a bumper sticker that means nothing in their world. How about the face behind that awareness day sticker? How about the life that’s affected by the disorder everyday? My part in bringing awareness about Apraxia with this blog post, or awareness about Multiple Sclerosis in another post, is showing a bit of the lives behind the diagnosis, behind that Facebook profile picture that’s been changed for the week. It’s a person, it’s people. People just like you. Children just like yours.

Why is awareness important to me? To Julian? It’s important because before Julian, I had never once heard of Apraxia. After Julian, I have never once heard of Apraxia outside of the speech therapy sessions, the doctor’s offices, the special education department at the public school, outside of the online parent’s support group. I have never heard a person who isn’t directly affected by Apraxia speak of it. But, you know what I have heard? And seen? Many kiddos who deserve voices. Just like Julian does. Many kids who want to share and connect and engage with their families. Kids who want to make friends and play tag and sing songs.

Apraxia is a piece of our lives, it’s a part of our story, it’s a battle that Julian fights (and wins) everyday. It made some years very, very hard for him, and for us. It was the thing that most shaped our reality, our days, from 2007 to about 2013. And we aren’t fully sure how it will affect his future. But… it is still only a piece. One piece of many, many more that make up who Julian is. It’s one color in his glorious splatter painting. It adds depth and strength to his master-piece. And some days, it takes away. Some days, it covers up other colors.

I would love to continue telling more of Julian’s story. More about this boy whose life is just as infinitely full of possibility as it was on June 23, 2006, when I held him for the very first time. Be on the look out for more. It’s just too much for one post.

Today is National Apraxia Awareness Day. That’s huge! I am wearing blue today, along with my family, in honor of Julian and all of the other children who bravely stand strong every day in a world where they can’t always be heard and understood. And I am wearing blue in honor of their families who see them for who they are, not for what they can or cannot do. And in honor of everyone who never stops believing and hoping for more words, for more and more and more words, for these precious children.

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The face behind that diagnosis. The little human who overcomes every challenge with the bravest heart. Julian was diagnosed with severe Apraxia at age 3. Julian began to use words that actually sounded like the words he was trying to say at age 3. Before, and a bit after that, he used a lot of gestures, approximations (what some call babbling), some (or a lot of) screaming when things got really frustrating, and basic sign language. He began to string more words together in phrases at age 4. By age 5, he was speaking in sentences and by age 6-7, people outside of his family could begin to understand his now intelligible speech. At 8 years old, Julian is not without challenges, but he is truly thriving. Photo by Sarah Naselli Photography.

You can visit http://www.apraxia-kids.org to learn more or show support! Thank you for taking the time to read this. ❤

A Portrait Project | April

A Portrait Project 

a portrait of my children, every month for one year

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My Micah. So observant, you are. And so appreciative of the world around you. You are kind and gentle to living things. You see much beauty all around and you are eager to share it with me. I love that about you.

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My Julian. I love your face, my baby. When I saw this photo, I knew it was the one simply because of the expression on your face. This is a face we see often. Daddy and I would look at it and see all things Julian. Strength. Sweetness. Focus. Heart. Maybe a little bit of rebelliousness. We love who you are. All of you.

Project Life | February

I started off this year’s Project Life album feeling pretty good about documenting in closer to real time than ever before. I planned to print photos weekly or at least every other week, and to record the stories while the details were still fresh in my mind.

I did pretty well in January 2015, but heading into February, life was in full swing, and documenting it took a backseat to living it. I fell a bit behind. In the Project Life community of creators, you hear a lot about this ‘behind’. That’s because many Project Lifers use the weekly format for their albums; week 1 through 52, each week gets a spread and everything flows quite nicely.

But, since I don’t organize my album by the week, was I really behind? Hmmm…

In Early March, I sat down to organize my photos taken in February and plan out the pocket pages I would fill with them. I organized and planned in much the same way that I always do; I just had a month’s worth of photos to do that with, instead of just a week or two’s worth. (Maybe I will do a post sometime on my planning process. It’s pretty simple, but it took me over a year to find my way, so it may be something worth posting. May be helpful to some…) I do the planning before I print the photos, so I can know what sizes to print which photos.

Soon, I had February 2015’s photos in hand and I was ready to get right to creating! Hooray! So, I go I would work as I had time and felt inspired to. And I liked working from the perspective of overviewing the entire month, even as I told the stories about certain days. I also liked how once I got into a creative flow, I could run with it, since I still had at least a few week’s worth of photos to play with! 😉

Most of the stories were still somewhat fresh… but, I also did rely a lot on Instagram and Facebook captions, notes in my phone and even asking the boys and Erik to help recall some details for me.

Anyway… if Project Life is a new or even foreign concept to you, then a lot of this is just jibber jabber, right? You can read more about this amazing form of memory keeping created by Becky Higgins here. 🙂

And today I am sharing here my favorite Project Life spreads from the month of February. Enjoy! ❤

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We had such a blast building that amazing Lego set together as a family. I knew I had to devote a full page to documenting that. It took me a bit to figure it out… When I finally did decide on which page protector to use, Design B , I thought that the cropped photos and being able to see through to the next spread might bother me. But, it didn’t at all and I actually kinda like it.

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This may be my favorite spread of the month. I loved how the blues, yellows, grey and even bits of red worked together. and of course, I love the super sweet memories.

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Really had fun going with the hearts and the lovey love stuff of February on this spread. 😉

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Ohhhh, I changed my mind. This one is my favorite. ❤

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More February memories, in the books. ❤ Makes me so happy…

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And there ya have it! As I put these pages together little by little, I feel that somehow I came back to the reasons why I do this at all. I don’t have all the coolest tools, the latest kits, I don’t have all the embellishments, the bells and whistles. I am not the Project Lifer with all the best and most innovative ways for documenting life’s moments. I am not the Project Lifer with the prettiest, most Pinterest worthy pages. But, I am a woman whose family’s stories are being recorded. A mommy whose hundreds of iPhone photos are printed and admired by the ones who lived those stories. And I am a girl who loves paper, yes. And color. And creating.  And I do this because it is the best, most fulfilling way that I know to bring together these things that matter so much to me.

Currently Creating | April

Oh, hey, remember that time I got all inspired and thought I could do a 365 day crafting time challenge? Haha. Yeah. That was funny.

I could tell you about how it didn’t work out like I thought it would and why.

Buuuut… instead I am just gonna go ahead and move on, okay? Okay. 😉

Trying something new now. Onto the next one. Let’s see how I do with staying a bit more consistent here…

Pretty simple. I am going to just share with you what I’m currently creating; what hobbies or crafts or projects I am currently feeling most creative in. That’s all. Pretty simple.

So here’s what I have been up to in the last few weeks…

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Lots of Project Life-ing. (Yes, that is definitely a verb.) I’m happy to have found my rhythm for this year’s documenting. I found it by accident when I got “behind”. More on that when I share my most recent pages later this week.

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I joined in a super fun month-long challenge on Instagram hosted by the lovely @myfriendcourt. I knew I would enjoy it, but I’ve been pleasantly surprised just how much I actually have. So fun to try new and different things! Things that I most likely would never have tried on my own. I mean… woodgrain? Yeah, I had never given a single thought to doodling woodgrain ever before this arty party! Haha!

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See?! I mean, how fun does that look? Today, it’s now April 21st and I’ve done all but 3 days’ prompts. I’d say that I’m well on my way to actually completing this thing! Hooray!

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I’ve also enjoyed creating a few cards for friends. Above is one that I actually remembered to take a picture of!

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And it’s been a good season for photography around here. Spring is radiant and irresistible, as you can see in my post full of photos like this one of the gorgeous redbud trees, that bloomed in my yard in early March. I’ve also enjoyed taking more photos of my boys with my Canon and not just my iPhone. The Portrait Project has been great for me; I’m loving how it’s stretching me to try much different light than I would typically shoot in. I’m grabbing the camera more often in everyday moments, rather than only those special planned times with the boys, in my favorite light of the day and in a choice location.

And that, friends, is my first Currently Creating post. I think I like it. 🙂 I think I’ll do it again soon! ❤

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Take time. Make time.

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Early in March, the trees in our front yard bloomed beautifully.

We have lived in this house for three springs now. The first spring, the trees bloomed. Thousands of tiny, pinkish purple-y flowers. Gorgeous.

The second year, there were no flowers. Just lots of green. The trees were lovely, nonetheless (I love trees), but I did miss the flowers that year.

So when this Spring the flowers came, I was happy. It’s the little things, really. Isn’t it? Every time I opened my front door, their color, their magic, their beauty greeted me. Each time I returned home, I was welcomed by our sweet trees, with their fullness and I would just smile, heart warmed. Really, I would. I would smile. I smiled a lot at our trees in the few weeks to come.

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I knew I would love to photograph the trees. I knew I wanted to remember them. I wasn’t sure if I would actually make time to do so, but it was definitely a thought. Do you ever think a thought like that? A thought of a little something you would like to do, to see, to say, to write, to make? Do you think, “I would really like to do that. If I ever have time…”?

It’s not necessary to do such things, to photograph the trees and their blooms. I know that. I knew that in the busy weeks to come, if I did not go into the front yard with my camera, that life would go on. It would go on just fine, of course.

But, one day, between a commitment early in the day and an engagement later in the evening, I poured myself a fresh cup of coffee, grabbed my camera and headed out for just a few minutes. And I am just so glad that I did.

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It’s really wonderful how taking just a bit of time for just a little thing that matters to me, how it energizes and excites me. How using a piece of my day, such a small fraction really, for the passions and creativity that occupy a great space in my being, doesn’t drain me or slow me down, doesn’t steal from my time with other more pressing and necessary  things. Taking time, making time for these little things that matter to me is not only worth that bit of space in my day, but can actually add to the fullness of all the other aspects of my day.

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I’m just not that woman, that mother or wife, who doesn’t have an identity outside of motherhood and wifehood. I have always still been me. Albeit a struggling, lost or confused version of myself at certain points (read: an 18 year old first time mommy. Yikes!), but still me. It’s not that I don’t understand how a woman could get lost in all the responsibilty, the chaos, the emotional roller coaster that motherhood and marriage can be. I definitely get that. And it’s not that I don’t think being a mommy and a wife aren’t important enough to take over the biggest part of me. Believe me when I say, they ARE the biggest parts of me.

It’s just… I’m a person. And there is a lot to me. I like a lot of things. And the older my boys grow, the more time I am fortunate enough to have to spend doing lots more things that I like. And so far, I am very much enjoying that. That’s all.

But wait… really… looking back… I scrapbooked when I had newborns. I wrote and sang songs with my husband when I had toddlers. I trained for a half marathon when my boys were young elementary age. Over the course of over ten years of motherhood and marriage, I have enjoyed a number of things that did not directly benefit or revolve around my children or husband.

Oh, but didn’t they? Didn’t they benefit? Didn’t my guys benefit from having a mommy who they see learning new things and growing in her natural bents in life? Doesn’t my husband benefit from coming home to a woman who has passions, who glows and chatters on about prospective projects again and again? I think so, yes.

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Anyway… if there is a point to this post, it’s this: Take time. Make time. For the things you enjoy. For the things that make you feel fuzzy inside and make you feel like maybe you have something to offer the atmosphere around you. You know… the things that remind you just how beautiful life is. Maybe you have 10 minutes. Or maybe you have 2 hours. Take it. And if you’re a mommy? Don’t feel guilty about it. Okay? Okay. ❤

And now, I will leave you with more of the photos I took of my trees.

OH! And if anyone can tell me what type of trees these are, I would be grateful!! 🙂

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Every run is like a prayer…

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I love to run. You know those runners who say they’re more into the feeling you get once a run is done?? Yeah, not me. I love the run itself. I love the act of running. When a run is over, I wish it wasn’t.

I first fell in love with running in 2011, when my mom suggested I train for a half marathon with her. I never thought I could go such a distance, but the training method she was using –and in a group training– sounded doable. I went for it. And so it began. There have been a thousand running experiences since then and there are many stories that I could tell.

In 2013, I began training for my third half marathon. I remember my last long run. It was a 10 miler. I remember the route. I remember the weather. I remember the sky. I felt incredible for the first 6 miles, I was rocking my pace and my energy was happy– I was full of life. Then… Just after mile 6, I began to slow… It was like I ran into a heavy, heavy fog. It was like I was running through mud. My legs felt like lead. My mind felt tired and troubled.

I remember this so well, because it was so intense and unusual. Normally, at the halfway point of a run, I would kick things up a notch and finish strong. This time… This time was so very different.
I remember this so well, because in the months to follow, I would look back and wonder… Was that the beginning? The beginning of what I would soon find out was my first marked Multiple Sclerosis exacerbation, or flare? 3 months later I would hear the diagnosis.

That was my last long run.

I could make you a timeline of my running journey since that day. The feeling of defeat and the feeling of loss. The hope within. The first time I was able to run again after months that felt like years, after wondering if I ever would.
The way that now… every run is like a prayer.
Every tree I look up at, with the light shining through it’s leaves, is like a sign.
Every finish is like a song of praise.

These days, physical activity of any kind that is at a high intensity or of a long duration exacerbates MS symptoms. It’s not pretty.

So, I choose to be wise and take care of my body. I don’t push. Not because of fear, but out of wisdom. Not out of weakness, but out of a desire to be strong.
I run when I can. And every second is glorious. I revel in it. I can’t even describe it to you.

Once I thought running might be taken from me. I mourned and I cried. But, I would be okay. I know that I would forever miss it, but I’d be okay.
Turns out, it hasn’t been taken just yet.
Every runner, Multiple Sclerosis or not, has to stop running one day.
One day, I will run for the last time.
But, that day is not today. 💛

A Portrait Project | March

A Portrait Project

a portrait of my children,  every month for one year. 

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I had this month’s portrait of you already selected. But, Sunday afternoon, I snapped this photo of you laughing with Daddy and I. And now, I can’t choose. Handsome boy, you’re growing each day. I love who you are. I love getting glimpses of who you’re growing into. You truly amaze me.

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You take a book or books with you wherever you go. You read at every meal but dinner, because that’s when we like to talk about our days and catch up with Dad.

ulian!!! Soccer!! Yes! This is your first time to play on a team, first time to experience an organized sport. We are so proud of you. So proud. You have a natural athletic ability and a competitive, determined spirit. It’s awesome to watch you overcome obstacles and challenges to learn and grow and PLAY in an all new way.

Julian!!! Soccer!! Yes! This is your first time to play on a team, first time to experience an organized sport. We are so proud of you. So proud. You have a natural athletic ability and a competitive, determined spirit. It’s awesome to watch you overcome obstacles and challenges to learn and grow and PLAY in an all new way.