Wednesday, October 17, 2012

Finding my voice...

So, here's the thing.  I am pretty sure that I have a story to tell.  I believe it's a story that needs to be told, a story that others can identify with, a story of healing and hope and restoration.  It is a story that is continually being written and rewritten; one where the very early chapters still thicken the plot as it unfolds today.  I also believe that I am capable of telling my story.  I think everyone has been given a way of communicating their story and thereby leaving their impression on the world--in paint or sculpture, in intimate relationship or corporate leadership, in financial generosity or time spent, in music or movement or verse.  The best way I know to tell my story is through the written word.  

The challenge I am facing is that I read all of these amazing authors telling some pretty cool stories.  As I do, I find myself wondering why on earth anyone would care to read my story when there are so many incredible people out there sharing theirs so well.  I seriously stalk the amazing blogs of Kelle Hampton and Glennon Melton.  I get lost in great articles I stumble on via Facebook like this one a friend shared tonight.  I cannot wait for new books from authors I admire like Shauna Niequist or Donald Miller who are weaving stories of redemption with threads that make you yearn to experience it, and who are telling about Jesus in ways that make you want to get to know him.

For as long as I can remember, I have been plagued with self-doubt.  The voice in my head has always warned me that failure looms just around the bend from trying something new.  Seeds planted very early in my life have grown into strongly rooted, barbed and twisty vines around my heart.  These vines bear fruit like fear and uncertainty, and they are a haven for the belief that as long as someone else is better than me, I am not worth listening to.

What I love most about the writers I listed above, though, is that they speak in their own unique voice, and their voice tells a personal story in a way that is riveting and compelling.  I could say that they are better writers than I may ever hope to be.  And yet...  They cannot tell my story.  They do not have my voice.  

For me, this is both the challenge of writing a blog and the motivation to keep going.  I must find my voice.  This sort of writing and sharing gives me the opportunity to try expressing little parts of my life and my heart in different ways.  This is the chance to find the balance and the rhythm of my own expression.  I want to find a way to be honest and raw and real about how very hard life can be and how much I struggle.  At the same time, I want to continue to bring myself and others back to the truth that in the midst of all that seems like chaos, God is bigger, and He is telling a better story than the one I am walking out on this earth.

I don't really know what that means just yet.  I can't decide just where this blog should focus.  Do I write about special needs and seek to raise awareness to the awesomeness having someone with an extra chromosome in your life can bring?  Do I chronicle motherhood, the joys of Tasty Tuesday and the trials of Mount Laundry?  Do I try to unpack spiritual truths in a devotional way, sharing what God reveals to my heart from His word or through relationships with others?  Or is this a way to put words to the story of a little girl, who has grown into a woman that is given beauty for ashes?  I feel like I need a focus, but for the moment, I really don't know.  I would love to hear your feedback if there is a topic that leaves you wanting to know more.

Thanks for joining with me on this journey to find my voice.  I pray that you will find a way to tell your amazing story in your own voice as well.

Loves.

Oh, and photos of my cuties.  Because, hello...  They're cute!





Monday, October 15, 2012

Another year older...


This past weekend it was my birthday.  I turned 33.  I was inordinately spoiled by my husband and good friends who made it possible to go just outside of town for the perfect Fall getaway.  We stayed at a lovely Bed and Breakfast that had 80 acres of amazing foliage to admire.  Much of it was visible from our room's balcony, where we sat and ate a delicious meal together in the sunset Friday evening.  It was completely excessive to celebrate a thirty-third birthday with an overnight trip.  Completely excessive, and totally necessary.  


View from our room... Fall is amazing.
Dinner--YUMMY!














The past couple of years have been...challenging...for me.  I have found it difficult to rejoice in a variety of problems and trials, as Paul suggests we do in Romans 5.  I have found it incredibly easy, however, to complain about them.  And in all of this complaining and whining about trivial matters of day-to-day life, I have forgotten to be thankful for the miracles I have been given.  This weekend was a wonderful reminder of one of those miracles--my amazing husband and pretty-gosh-darn-happy marriage.

Oh yeah, ladies...  This one's all mine!














It is easy to let the pressures of our crazy schedule (we work opposite shifts) get in the way of good communication and loving exchanges.  We are often short with one another.  We get frustrated about little things.  We could do a better job of establishing routines and structures that would anchor us through the regular storms of life--being over-committed,  running late, unexpected bills, getting sick--all of the little things that make up day-to-day married life.  We both work very hard and often parent independently, and it's too easy to take each other for granted.  In spite of all that, we are incredibly blessed in knowing that we both really love each other.

I honestly count my loving husband as one of the most amazing blessings in my life, and a good friend recently reminded me that in all actuality, my marriage is really a miracle.  Someday I hope to write about all of the chaos that makes me having a surviving and thriving marriage so miraculous, but for now I'll list the highlights.  My parents divorced when I was four.  My father soon remarried, and divorced again when I was twelve.  My father remarried a third time, and his current wife wants absolutely nothing to do with me.  My mother also remarried when I was young, and her husband is not a kind man, to put it mildly.  My childhood was full of abuse and neglect, and yet it was full of grace and redemption as well.  I have been married for twelve years, and in that time my husband has shown me a love I never believed I deserved.  He has loved me in a way that is Christ-like and devoted, and he has protected me in a way my own parents never did.  We are together against all odds, living out a marriage that has either lasted longer or been much more healthy than any of my parents' many unions.  My marriage isn't perfect, but it is a miracle.

View as we began our drive home...



I am so grateful for our little overnight trip to reconnect.  It was short, but it was full of laughter, of love, of time with no one but each other for just a little while.  I was refreshed by the incredible scenery, the luxury of someone else taking care of me, and the opportunity to talk with one another.  We must find a way to integrate this kind of connecting into our daily lives.  




Taking time...

This year, 33, I want to take control of my own thoughts.  I want to bring my focus back to the many miracles and blessings I have in my life, instead of focusing so much on what I want but do not have.  Although the challenges loom large in front of me and threaten to overwhelm me at times, the truth is that the blessings outweigh and outshine the challenges.  I need only to remember where to put my focus and my hope.


"Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God's glory.  We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance.  And endurance develops strength of character, and character strengthens our hope of salvation.  And this hope will not lead to disappointment." Romans 5:2-5a (NLT)

Love wins...  And it is a miracle every single time it happens.

Wednesday, October 10, 2012

Toddler Season

I am failing the 31 for 21 challenge.  But I am hopeful that I am not failing awareness this month.  I continue to be delighted by the shift in seasons, including the changing foliage.  It is truly amazing the amount of color we are getting this year, considering how hot and dry our summer was.  I am relishing in the cool evenings that call for another cup of warm coffee and chilly mornings that require extra snuggles under the blanket while the heater kicks in.  I still love that the mid-afternoon sunshine has us throwing off our jackets and soaking in the warm rays.  As temperature fluctuates back and forth at this time of year, it is sometimes hard to know what season we are in.  Wintry mornings, late spring afternoons, fall evenings...  This back and forth process is the season changing and I suppose life is like that as well.  Some days I wonder if I am changing, growing, moving forward in the way I would like.  I am ready for a new season of joy and gladness, of contentment in the present.  I do not always feel as though I am embracing the now, but the fact that I am evaluating my ever-moving thermometer is a sign that my season is changing, too.

Some days I worry about therapy plans and differences, and then Brynnlie Grace reminds me that she is so much more like every other kid than she is different from them.  Today, we had playgroup at our house, and she got in to trouble with her toddler playmates, trying to make a quick escape.  She hung around her Momma's knees like a baby bird, looking for a snack, just like her friends did.  Later on, she unrolled an entire roll of toilet paper, as any toddler will do the moment someone leaves that darn bathroom door unlatched!  Oh, the Toddler Season!  About as unpredictable as a Midwestern Fall, and nearly as fun.


Hope you are enjoying the changing seasons outside, and that, if you need one, God is bringing a changing season to your heart as well.

Loves...

Wednesday, October 3, 2012

Not Quite Yet

Little Bear
 I have lost count of how many times I have gasped and sat up on the edge of my seat, thinking that Baby Girl was just...this...close...to taking that first step.  I watch her for a few moments, reaching my hands out to her, encouraging her.  She stands, barely an inch from the couch, blinking at the unfamiliar feeling of supporting all her weight on her own two feet.  She stretches her arms away from her body, fingers fully extended, legs beginning to wobble with effort.  She rocks on her heels and toes, reaching, grasping, thinking...  You can almost see her willing her own foot to rise from the ground.  Seconds later I fall back into my chair and shrug, not quite yet, as she plops down into her "little bear" position and saunters away.

While I am not discouraged that she hasn't taken that first step alone yet, I do sometimes feel disheartened after a difficult occupational or physical therapy session.  There are days when she refuses to put her feet on the ground, when she hangs the weight of her body from my arms or the arms of her therapists, and pulls her toes up toward her chest, as far from the floor as she can get them.  She insists with loud cries of protest, not that she cannot walk, but that she will not.  I do not worry about her physical ability to walk, I worry about her emotional willingness to do so.  She does not like for her body to be manipulated, and I fear that her extreme aversion to accepting help will begin to impede her forward progress.  My adorable little bear is stuck right now; when she stands and stretches her body forward it is as though her feet are glued to the floor. It seems as though her feet cannot receive the message that her brain is sending.  If only she would let us lift that foot for her, put her body through the motions, help her brain to imprint the message in the movements of her body.  Once the connections are made, I believe there will be no stopping her.

In those moments when I catch her trying on her own, I can see on her face that she wants to take a step.  I can tell by her eyes that she will take a step.  I get a glimpse of her resolve, and I reach my hands out toward her, coaxing her, calling her, yearning for her to make that move.  She stares at me, and then her glance wavers, and she sits with a plop and a look that says, not quite yet.

Tonight, I am aware that I am not unlike my Baby Girl.  Emotionally, I have been stuck in a tough spot for a while, shrouded in doubt and darkness and depression.  I know the steps that will lead me out, I know who I need to call on and in whom to place my trust.  So I struggle onto my feet and I reach my arms out toward the One who can rescue me.  I tell my brain to make my heart believe the truth instead of lies, I will myself to keep moving forward.  As I stretch a little further, I falter, I wobble, and I plop back down in my muddy pit.  Not quite yet.  I know that it is time to move forward, and yet I am afraid to let go of what has anchored me in this season of my life.  I am ashamed to admit that my anchor has been wallowing in misery and self-pity and anger.  I have lost track of what, exactly, I am really angry about.  But I have let so many dark thoughts and so much bitterness slowly seep into my veins, that I am afraid if I let go of all the anger I am holding onto, I will fall flat on my face.  I will be weak.  I will be broken.  My anger seems to hold me up, I think it is a wall I have built to keep me strong.  Instead it is a weight that holds me down, and presses me further into the mud.

Looking on in anticipation as my Baby Girl stands, thinking about how she may need more help to take those first steps, I began to feel an awareness of how much I need to allow myself to receive help as well.  I believe that my Father God is watching me, wanting so much to help me, take the weight of my anger from me so that I can escape this pit and allow him to change my heart.   Even though I wobble and falter, He is delighted just to know that I want to take that first step.  He is on the edge of his seat, stretching toward me and wanting me to reach for Him, and He promises He will not let me fall.  He is not disappointed that I haven't taken that step yet; He is overjoyed that I am willing to try.

That I will keep trying, that I will allow myself to be rescued, that I will ask Him to lift me, and that I will walk out every step of Psalm 40 with His help...  This is my prayer tonight.

I waited patiently for the Lord to help me,
    and he turned to me and heard my cry.
He lifted me out of the pit of despair,
    out of the mud and the mire.
He set my feet on solid ground
    and steadied me as I walked along.
He has given me a new song to sing,
    a hymn of praise to our God.
Many will see what he has done and be amazed.
    They will put their trust in the Lord.
Oh, the joys of those who trust the Lord,
    who have no confidence in the proud
    or in those who worship idols.
Lord my God, you have performed many wonders for us.
    Your plans for us are too numerous to list.
    You have no equal.
If I tried to recite all your wonderful deeds,
    I would never come to the end of them.
You take no delight in sacrifices or offerings.
    Now that you have made me listen, I finally understand—
    you don’t require burnt offerings or sin offerings.
Then I said, “Look, I have come.
    As is written about me in the Scriptures:
I take joy in doing your will, my God,
    for your instructions are written on my heart.”
I have told all your people about your justice.
    I have not been afraid to speak out,
    as you, O Lord, well know.
10 I have not kept the good news of your justice hidden in my heart;
    I have talked about your faithfulness and saving power.
I have told everyone in the great assembly
    of your unfailing love and faithfulness.
11 Lord, don’t hold back your tender mercies from me.
    Let your unfailing love and faithfulness always protect me.
12 For troubles surround me—
    too many to count!
My sins pile up so high
    I can’t see my way out.
They outnumber the hairs on my head.
    I have lost all courage.
13 Please, Lord, rescue me!
    Come quickly, Lord, and help me.
14 May those who try to destroy me
    be humiliated and put to shame.
May those who take delight in my trouble
    be turned back in disgrace.
15 Let them be horrified by their shame,
    for they said, “Aha! We’ve got him now!”
Not quite yet...
16 But may all who search for you
    be filled with joy and gladness in you.
May those who love your salvation
    repeatedly shout, “The Lord is great!”
17 As for me, since I am poor and needy,
    let the Lord keep me in his thoughts.
You are my helper and my savior.

    O my God, do not delay.

Psalm 40, New Living Translation



Tuesday, October 2, 2012

First Downs for Down Syndrome and a Moment of Awareness


Today our local Down Syndrome Guild hosted an amazing event that we were happy to attend.  Members of the offensive line of my favorite football team (no fair-weather fans here!) signed autographs, held babies, and smiled for the camera over and over again at a local KFC.  Football is definitely another of my many favorite things about Fall.  It was all part of First Downs for Down Syndrome, a non-profit organization that teams with members of the Kansas City Chiefs Offensive Line to raise money for Down syndrome organizations, raise awareness of Down syndrome, and create positive images of those with Down syndrome.  So this meet and greet photo op was kind of the perfect lunch-date for Day 2 of the 31 for 21 challenge, right?


This event was crammed right into the middle of a very busy day for me.  Those times--when babies are squawking in high chairs and preschoolers are bouncing in booths, when I have to go back to the counter twice to order food because my brain doesn't work well enough to figure out how much I need for myself and two kids--those are the moments where I find it difficult to maintain an awareness of the watchful and vigilant type.  I am glad I took pictures and have the opportunity tonight to reflect a little bit more on our outing.



I enjoyed seeing other babies, toddlers, big kids and even an adult or two with Down syndrome having fun, eating lunch and getting autographs.  They were all pretty excited to meet the players, who towered over almost anyone else in the restaurant.  Some of the younger gentlemen found the cheerleaders to be the most appealing.  (I need to get some of those pom-poms!)  Although Asher wanted to be sure to tell the "girls" he liked their dresses before we left, his favorite was definitely the KC Wolf, our beloved mascot, who I've heard is an all-around pretty great guy.  (Note that Brynnlie was not convinced.)


In the midst of all this fun and chaos today, I had an opportunity to spread awareness of the knowledge type.  I wish I could say I had seized the moment, but I did not.  So I will share it here on my blog and hope that I am bold enough, aware enough, and sensitive enough, to share it in person the next time I have the chance.  A sweet woman came into KFC looking for some lunch, having absolutely no idea the hullabaloo she was entering!  As she stepped up to the counter, she glanced around her bewildered and asked, "What are they doing here?"  I was nearby, and so I replied that it was an event with First Downs for Down Syndrome.  "Oh, Downs!  OK.  That's great.  I was a teacher for years, and I always loved those little Downs kids."  It's funny how much different that sounds to me now than it did a year ago.  

When this sweet woman says she loved those little Downs kids, I am sure she means it in the most positive way.  But my Momma ear now hears her refer to my baby as one of "those" kids, and no Momma really wants her baby labeled into a broad category that is ultimately made up of so many very different individuals.  Brynnlie Grace is not a "Downs kid," she is a kid who just happens to have Down syndrome, among many other unique and special traits. If you would like to build your awareness by learning more about the importance of People First Language, and the correct spelling and punctuation of Down syndrome, please click here.  This knowledge has definitely made me more aware of the labels we place on one another, and how limiting any label is for truly knowing a person.  We all possess so many different gifts and abilities, and it is the whole, not just one part, that makes us who we are as individuals.  For now, I will just say that I promise not to refer to your beautiful and unique child as one of "those" kids, if you promise to do the same for me, no matter how harmless the label we put upon them may seem.

Thanks to this amazing article I read today, I'm including this photo, although it is difficult for me to do so.

The Mom Stays in the Picture

Tomorrow I hope for a shorter post, or there's no way I'll make 31 for 21!  I'll be watchful, like this guy, and find time to be aware of something new.


Loves!


Monday, October 1, 2012

Welcome, October!

My one-and-only Pinterest creation!
October has always been my very favorite month of the year.  It is my birthday month, and I have always been just a little spoiled on my birthday!  It is also the time of the year in the Midwest when the stifling heat begins to give way to cooler breezes.  The humidity level finally drops, and the cicadas cease their deafening cries.  The relief from the heat has never been more welcome than this year, after a very hot summer of drought, with parched grass and cracking earth.  As the thermometer finally falls below 80 I feel as though the world is becoming a little more quiet; perhaps the noises are muffled by the leaves falling to the ground.  The back-to-school buzz has passed and we finally take a breath, reconnecting with our routines.  Twilight begins to darken just a moment earlier, calling us to make the most of gorgeous evenings while they last.


I could go on for hours about the goodness of Fall.  I delight in the flavors of pumpkin spice, caramel apple, and creamy cocoa.  I am in awe of the changing leaves, golden grasses, and sweeping landscapes that are evidence of an incredibly artistic Creator.  Tonight my heart was lifted by a quick walk with my littles--there was a cool breeze blowing, red and gold and orange leaves turning and peewee-football-practice-whistle-blowing in the park.  We followed up our little walk with the first caramel apples and cocoa of the season.  A perfect way to say, "Welcome, October!"





One year ago, I learned I had yet another reason to love October.  October is National Down Syndrome Awareness Month.  I was five years old when President Reagan signed a proclamation enacting that in 1984, yet my first knowledge that such a campaign existed was last year, when I was still learning all things new about my own Baby Girl with Down syndrome.  The common definition of awareness is having knowledge   Prior to last year, I had very little knowledge about Down syndrome, or that National Down Syndrome Awareness Month even existed.  I have learned many new things, and I would say in the last year that my knowledge has increased.  There is, however, also an older definition of awareness.  The more archaic definition of the word is simply vigilant; watchful.  I am intrigued by this concept.

This October, I want to be aware of Fall as it unfolds around me during a very busy month.  I want to breathe deeply the scents, taste the flavors and enjoy the coolness of this month of reprieve.  I want to be vigilant in exploring our world as it changes each day, watchful of the leaves as they subtly color and fade over time.  I also want to develop a better awareness of what Down syndrome means to me.  I want to engage in vigilant, watchful contemplation of my daughter, and explore my thoughts and feelings about her life and ours.  It is not always breezy walks at twilight and cozy cocoa sipping around our house.  I want to develop more appreciation for and awareness of those moments, but I also want to explore the deeper current of how I have been feeling since my precious girl was born.  I want to notice and learn more about other individuals and families with Down syndrome.  I want to do more than just see these incredible people, I want to become aware of them.  

I hope to record and share on my blog throughout this month of exploring and cultivating awareness, and I hope you will join me on this journey of celebration.  Cheers!  Here's to National Down Syndrome Awareness Month, to Fall, to caramel apples, and to hot cocoa mustaches!  May your October find you vigilant, watchful, aware...


After posting this, I learned that many people choose to blog throughout October as a way of raising awareness during this special month.  What a wonderful way for me to get my blog off the ground and to stick to my plan to be vigilant and watchful during National Down Syndrome Awareness Month.  I am joining the blogosphere in posting 31 times throughout October to raise awareness for our special friends with extra copies of chromosome 21.  31 for 21.  Thanks for sharing the journey with me.  To learn more, or to join the 31 for 21 challenge, visit Big Blueberry Eyes.

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