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. ❤

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. 💛

#selfiesforever

This evening,  I had a conversation about the “selfie” with my husband. About the idea of it… about different reasons or possible reasons people may have for taking said selfies and for posting them on social media. About the reasons why I take selfies and the reasons why he doesn’t.

I know that for me, the idea of a “selfie” isn’t new. I know that for me, taking photos of my own face has been a way for me to document, commemorate or remember a moment, and has been since I was a young teenager. This was before the smartphone camera, MySpace, Facebook and the rise of Instagram. Haha.

I have a photo of myself in my bedroom at 17 years old, taken with a Kodak disposable camera, which I would later take to the grocery store photo lab to be developed. I took this photo of myself, in my bedroom in my parent’s house the night before I would set out into the world to begin my adult life after graduating from high school just a few days earlier. It’s one of my favorites… and not because I look beautiful — I had been packing all night, my hair was messy and my face was tired. And not because the photo itself is remarkable in any way— composition or lighting — haha, no.

I don’t know what exactly compels me to take photos of myself in moments I want to remember, or moments that I feel pretty, or moments that I don’t feel pretty.

You have your reasons why or why not, I have mine.

I’m definitely PRO-Selfie, guys.  😉

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My back-up glasses, which I wore for about 3 weeks, while my others were lost.

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On a day when I didn’t feel well at all…

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I’m also cool with asking my husband or kiddos to snap a quick pic of me. Especially when I’m wearing a dress that I love and the day is sunny and lovely. 😉

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Taken just yesterday, when I had a moment of realization— I have only 6 months left of my 20’s. Weird! But, also, okay with me 😉

  I hope that if you happen to be PRO-Selfie like me, that you won’t feel sorry for it. Take a picture of your own face if you want to. It is lovely. And it deserves to be in a photo or two. (insert kissy face emoji here)

One year ago today…

I was numb from my left shoulder to my left foot. I was getting used to the feeling (or lack there of) after two weeks of it. Still, I wanted to know why.

I wanted to know the cause behind the chaos that was taking place in my body. I wanted to know why I felt like a stranger there, in my own skin. No… not a stranger. A stranger has never been known. I felt like a friend betrayed.

I could have played a dramatic role in an autobiographical feature and I would have said to my body in a breathy whisper, ” I don’t even know you anymore…”

Then I would have said it louder, a shout, really—- “I don’t even KNOW you anymore!!!”

One year ago today, January 28, 2015, I sat before a pretty neurologist, named Carmen.  My husband sat to my left. I nodded as she spoke to me. She spoke in a soft, kind voice. She had a Spanish accent. I nodded as she spoke; I nodded as though I understood her words and what they meant for me.

But, I did not. I did not understand what those words, what that diagnosis would mean for me.

And I still don’t understand.

Multiple Sclerosis had been suspected from my first visit to the general practitioner in October of 2013, three months prior.

On this day, one year ago, Multiple Sclerosis was confirmed.

I was not afraid. I did not cry.

In the months to come I would cycle through quite the range of emotions regarding this diagnosis and everything that came along with it. But, one year ago today? Sitting in that room with my husband and Carmen, hearing that official diagnosis… seeing in it on paper…hearing that I was actually in what is called a ‘relapse’ or a ‘flare’ and needed to be treated beginning that day? I was not afraid. Or sad.

I was relieved.

I felt that I had an answer to so many questions. I felt that I had a name for the nonsense that my body had been pulling. Having a name, having this diagnosis made me feel like I had a target, something to shoot at. For months, in exasperation, I had said, “Just tell me what is going on, so I can deal with it!” Now, I felt I could more efficiently come against this thing. This thing that now had a name. Multiple Sclerosis.

One year ago today, I was diagnosed with Multiple Sclerosis.

When I started this blog, I thought it would be a great place for me to process my thoughts and dealings with this disease. But, it turns out— I would rather blog about my art journal and my family’s ‘right now’ and about twenty other things that are more fun to write about. Hah.

But, sometimes… sometimes, I think I will write bits about this thing, this Multiple Sclerosis. I have many thoughts, feelings on the matter. I have walked through a few more experiences now with it and I have a more clear perspective and stronger confession of what I believe about myself and God than I did one year ago today. So… maybe sometimes I will write about it.

But, for today, I would like to close this acknowledging of sorts with more acknowledgements.

Because, one year ago today, what I felt most was relieved.

Today, what I feel most is grateful.

Thank  you, Dr. Baros. I came to you for the very first time, a new patient, caught off guard by the weird things my body was doing. Thank you for not dismissing me. Thank you for listening. I didn’t know what I was telling you when I told you I was ‘weak’. But you saw the red flags and you saw beyond the obvious. And you treated me as a Doctor would treat his daughter or wife. It’s because of you that I got the care that I needed in that time. Thank you.

Thank you, my grandparents, for driving down to stay with us. Your help around the house and with the boys, your company, your hands holding mine, your sweet faces trying your best not to look worried… it meant everything to me. Thank you.

Thank you, my Mommy and Dad, for believing in me. You sent me a text the day I got a spinal tap that was the equivalent of ” ‘atta girl”. I wish I had saved that text, but I will always remember how it made me feel and I know even today, how proud you are.

Thank you, Mommy, for somehow knowing how I feel. I don’t know how you know, but you can hear it in my voice. Sometimes I feel alone because no one can see when I am “sick”. But, you always know when I’m not well. Thank you for saying so, for looking out for me when I’m trying to push myself through, for reminding me to rest. Thank you for also knowing and noticing when I am well, feeling better than good and for saying so. “You sound good today.”, you say. Thank you, Mommy. I feel good!

Thank you, my children, for being YOU. You weren’t phased by the diagnosis and why should you be? You know and trust what we, your parents, say and show you. So, you are your bright and beautiful selves. You know when Mommy isn’t feeling well and you’re sensitive to that. Sweet boys. But, your joy and your sense of wonder is in tact. For that I am so thankful!

Thank you, my husband, my very best friend. I want to cry as I type this, overcome with thanks for the love I have in you. Thank you for holding me when it hit me. Thank you for holding me when I cried. Thank you for seeing me, for always seeing me. NEVER ever seeing a liability when you look at me. Never seeing a “sick” woman. I would have never asked you to walk this road with me, had I seen it coming. Because I love you too much to ask that of you. But, I THANK GOD that you were already here and completely in love with me, committed and can’t imagine your life without me by this time. Im thankful that by this time in my life and for so long before it, we were already stuck like glue. Because I can’t imagine being here without you.

Thank you, my friends and family, for being there. For being there even when you didn’t know what to say. For learning about Multiple Sclerosis so you could better understand. For letting me talk through it when I need to and for letting me forget about it when I need to. For crying with me. For getting mad with me. For praying and believing.

Thank you, my God. For who You are. Thank you for your words that are true and that I can count on staying true and for proving them true over and over again. Thank you for being GOOD and for making crappy things work for that good. Thank you for your peace. For your guidance. Thank you for your grace. I need it so much! Oh, how I need you.

One year ago today, Erik and I left the Doctor’s office after my first IV infusion. We went, with our boys, to lunch at our favorite restaurant. We smiled and hugged, we ate. Unafraid of the future.

In the days to come, sure—- we would have low moments. I, for one, would question and doubt, I would cry. And I would, at some point, feel afraid.

But, on this day one year ago and on this day today? I am whole. I’m loved. And I am thankful.

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Photos taken January 28, 2014. One year ago today.

Word.

Much of my 2014 was spent re-realizing and solidifying many of the truths by which I live my life. There was evaluating and some discussion, but not much debate or inner conflict. I know a good deal about who I am at this point, and I was glad to go deeper and pull more from the foundations of what makes me ‘me’.

2014 was a slow year in terms of on paper accomplishments. (Technically, so is every year thus far. I’m not very impressive on paper at all, guys.) But, it felt like such a a significant year on the inside.

I keep going back to this quote that I pinned early in 2014:

We did not change as we grew older;

we just became more clearly ourselves.

~Lynn Hall

This has been true for me.

And so, without further ado, I would like to introduce my word for 2015:

LIVE.

Yep. That’s it. Sound simple and rather unoriginal? Haha. That’s okay. It’s my word. Not yours. 😉

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For the last few years, I have had a word. The first year, I didn’t mean to. But, the revelation was so great and undeniable that I knew my focus of 2012 was LOVE.

In 2013, I didn’t ask for a word. I didn’t think of a word. I didn’t even know I needed or wanted a word. Still, it came. GRACE.

Toward the end of 2013, I wondered if I would have a new word

Sure enough, it came to me. DREAM.

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Call me silly or religious or both. (I’m the first, but hardly the latter.) But, I believe these words were impressed upon my heart, upon my spirit, by a loving God who longs to reveal to me beautiful and life-altering things. I believe that He is my teacher. And that He uses what He will to reach me. Gosh, He loves me so much. He just gets me.

So, I’m holding onto the lovely things I learned in the first few years of the word. And I am expectantly moving on with my new word.

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More to come of this word, LIVE. More to come, I assure you.

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I have created a vision board dedicated to my word for 2015 via Pinterest, if you care to follow along. While I do plan to create a physical vision board as well, it is nice to have warm, fuzzy inspiration at my finger tips. I like to add to it when I am feeling giddy and when I am feeling low. It’s just one of those little things. I’m surprised at how much I love my virtual vision boards and how often I refer to them. Here is the link, if you’d like to take a look. And if you create a vision board for your year, even if you don’t do the ‘word’ thing, I would love to hear about it! Shoot me a comment!

Happy New Year, guys. It’s going to be a GREAT one. ❤

 **Note: All graphics and photos used on Sum of My Life blog are my original designs and creations. Please use with permission, or link back to me! Thank you!**

The Important Stuff

I made a remark (complaint) about how the house is a wreck. Micah said, “It’s probably because you’ve been busy with other stuff.” Yes, he’s right. Though I have been working through my never ending to-do list a little at a time. I crossed off two mundane tasks today (why do I dread business type phone calls so much??) and will cross off laundry soon. I could probably get through it all a lot more quickly if I cut out things like making Christmas cards by hand, baking homemade sugar cookies and babysitting my niece for the afternoon. But, the things will all get done… and if they don’t, that’s ok too. The important stuff will leave the impressions on the heart that I long to leave. And the important stuff is what I choose not to feel guilty about making time for. Today the important stuff is baking with love, listening to my big boy talk (and talk and talk), snuggles, crafting side by side, creating a Christmas music playlist. Today I am incredibly fortunate for the time I have to give to the important stuff.

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