Thursday, January 26, 2017

Learning The Same Things Over And Over Again- 7 Years Later

This time of year on my Timehop, the same picture seems to flash up a dozen times.

Me, very pregnant, standing in front of a brown crib in a pink room with the name "ADDISON" splayed out on the wall over the crib.
In this picture I am smiling on the outside, but on the inside? I had two weeks to go with my first pregnancy. The pregnancy that took me to hell and back. The pregnancy that stretched my faith and threatened to break it completely.

"Please God. PLEASE" I can still hear myself praying as I stood next to that crib for my last belly picture. "Please let those tests be wrong. Please PLEASE let her be normal."

And yet, she wasn't.

Well, according to her chromosome count anyway. What is normal anyway? (Four kids later- I have yet to see a "normal")

I have been so excited to go to the hospital and meet each of my children. In fact, pictures of those birthing rooms bring back so many positive, glowing emotions. Saying "well hello there" for the first time. Looking into brand new squishy faces, studying fingers and toes, holding the tiny body that was mine to nurture.

But seven years ago, there was more fear and angst than there was joy. What was I giving birth to? What exact was Trisomy 21? Down syndrome? Was I giving birth to a syndrome? A disease? A mistake? Why wouldn't God stop this from happening? Did he not love me? Did he not care about our family? And then after she was born and immediately whisked away to the NICU and a very long uphill battle began for her life, the experience became even more tainted.

And so I stare at this Timehop memory with quite mixed emotions. I was about to become a mother for the first time. An occupation and title I hold quite dear. The pregnancy that had ripped me open was almost over- the end was in sight. I was about to meet Addison for the first time.

And yet looking at my eyes in this picture and knowing what was on the inside- my faith in God's plan for our family in this situation was nonexistent- this faith was replaced by a determination to control the outcome with what I deemed to be better rather than simply resting in his plan- which was, in fact, better. This faith was replaced by anger. By fear. By denial.

Seven years later I look back on this angst and shake my head. I gave birth to a baby girl. A sweet, beautiful, fabulous baby girl who continues to grow and amaze us every single day.

The very thing I was resisting, the very thing I prayed, PLEADED against- is the thing that has brought our family so much joy. The thing that I honestly and wholeheartedly call a gift to our family. A way that God shows us grace and love. Down syndrome.

Addison's diagnosis hit me in waves her first two years of life. I would be fine with it one day- struggling with it the next. It wasn't like flipping a switch and the light coming on about the joy of Down syndrome. This was a daily journey- working through a lot of physical health issues, starting her therapies, figuring out how to just be a mom and love unconditionally (turns out...selfishness is a thing. Who knew?)

There will be moments still where I get very frustrated with her (i.e. this morning when she just WOULD NOT get out the door for school), and the thought flickers into my head for a brief instant "Why? Why is this SO HARD!"

But then as I watch her navigate life, listen to her happy chatter, fold her into my arms, breathe in her essence, and realize that whatever issues that are "SO HARD" have more to do with my parenting and my patience than anything that she's doing wrong- I realize anew the gift of her diagnosis. The way it pushes me to love better. To parent more effectively. To find grace in everyday moments.

But even as I am thankful for what Down syndrome has taught me, I take it a step farther and recognize that the gift has nothing to do my version of Down syndrome and everything to do with who Addison is as a person. What this particular crafting of her genetic makeup does to her personality, to her smile, to her being, to her ability to touch hearts and lives wherever she goes.

I have blogged about this flip flop. Mostly toward the beginning of blogging. YAY Down syndrome. Down syndrome is HARD. What was I talking about- this journey is amazing!

I often wonder why I have to learn the same lessons over and over again. That the "Oh okay, God. I see what you did there!" moments don't seem to transcend to all moments. That I constantly, daily find myself needing to learn to trust in his plan. And with Down syndrome- the hardness always crops up in sync with my own selfishness. It took me a long time to recognize this as selfishness. As my own sin. It took me a long time to look back on the shock of her diagnosis and not write it off as "well, anyone would respond that way!" and recognize that this was my pride at work. My extremely selfish heart. My lack of trust in God.

Also flashing up on my Timehop this time of year, two years ago I poured my heart and soul out into a novel, Motherhood Unexpected, working through many of the emotions of Addison's pregnancy and birth while enjoying my favorite genre- fiction. In Motherhood Unexpected, the main character struggles with an obsession with perfectionism. After much hard work and prayer, I published this book. And then almost had a breakdown over the first published edition not being perfect. (long story...but in hindsight- sleep is good).

I then spent months working through something that I thought I had settled while writing the book. What? Didn't I already learn that? I spent thousands of hours crafting this novel- well, first thousands of hours learning how to craft a novel- and then painstakingly stringing just the right words together- just the right characters (who I fell completely in love with). And while writing through Claire's perfectionism and how that influenced her initial nonacceptance of her baby with Down syndrome, I prayed through my own pride in this same area and was GOOD...until some typos slipped through to the first few books.

IT'S NOT PERFECT!!! MISSION FAILURE! (never mind the next uploaded version with fixes and the hundreds of notes I am still getting from people telling me what an encouragement and challenge this book has been to them. God used it- in spite of me. I think this might be the theme of my life)

I had to completely rework and pray through this issue of perfectionism in my heart once publishing was complete.

Why can't this be a "learn this once and be done" deal?

I want to make a printable to hang next to my closet that reads "Today may I be clothed in kindness, love, and grace....accessorized with heaps of humor in just the right places." (perhaps with a picture of fashionista Addison dressed all kinds of fabulous.) Because it is my prayer every day to demonstrate kindness, love, and grace- but I so often fail with this with the ones nearest to me- my children and my husband. So often I need a "redo" button, a fresh start, a chance to take back hastily snapped words and replace them with words saturated with patience and grace.

Why? Why can't I just pray through something once and be good to go? Why am I continually learning the same things over and over again?

Perhaps I am a slow learner.

Or perhaps- it's this very struggle that strengthens faith, that causes me to lean heavily on the one who never struggles, that constantly points me back to the cross and my inability to heal my own brokenness.

Perhaps it is this daily working through things- this daily asking for help- this daily dependence on God that continually draws me closer to him.

As I look back on my Timehop picture from 7 years ago- as I'm about to meet Addison and have my world explode and become a legit special needs mom- my overriding emotion is one of disappointment- in myself.

I wish that I took one look at her sweet face and everything just clicked into place for me- the love- the hope- the faith in his plan. The beauty that is to be found in the unexpected. The joy that she would bring us. But instead I had ahead of me many moments of fighting and wondering, questioning and struggling.

But maybe this daily journey of faith and love is what was necessary to make me into the mom that Addison deserves. That all of them deserve.

Maybe I needed this struggle- this searching for faith- the daily confessing and pleading for strength-to become worthy to take her tiny hand and walk alongside her in life.

I am certainly not a perfect human being- or mom. I have Timehop to remind me. Daily.

But I am supremely thankful for each of the steps that have led me to today. An education of sorts to get to where I need to be in order to handle the day in front of me. I don't know what today holds. Grocery shopping with a toddler and a baby-so no doubt relearning all of these things over yet again.

We are just a couple weeks out from celebrating Addison's seventh birthday. She is healthy. She is strong. She is beautiful. She is smart.

And with every breath she breathes, I am reminded- God is good. I am reminded- to keep loving- keep growing- keep pushing forward because she has a lot to teach me. And a lot of fabulous living to do.

I wish I could read this post to the pregnant girl standing in front of the pink ADDISON wall 7 years ago. She probably wouldn't have listened, because she needed to live all of this out for herself. But maybe, just maybe, she would have. And that birth would have been full of as much joy as the other three. And those first weeks and months- just as sweet.

Thursday, January 5, 2017

An Ah-Ha Moment Like A Bolt(ing) Of Lightning

I sat in the parking lot, fighting back cold and bitter tears that would match the rain falling outside.

That had been like a walk through the parental hall of shame.

You wouldn't think it would be so hard to walk from the pool locker room allllll the way out to the car. But for some reason, it was.

I lost Addison four times.

At first, she just gently ran away- wandering over by the bathroom stalls. Did she have to go potty? Nope. Just exploring.

Then while we were walking down the long hallway, she got a bit more aggressive and ducked into a doorway- a physical therapist's office. Apparently she wanted an appointment! And to chat about chocolate. (One of those two things is true. I'll let you guess which one.)

Then up by the closed play-place, she opened the door and disappeared into the darkness there for a while.

Once retrieved from there, she meandered back over to the pool entrance.

By the end, I was carrying her, along with the baby. Sweat was dripping down my face as I avoided the stares all around me. You know the stares. Raised eye brows, open mouths, and "why did you have children?" eyes. I thought I was doing good to carry all of the swimming gear, the soaking wet towels, and the baby all the while directing the boys with their floaties toward the car (with my third and fourth arms). Carrying Addison's writhing form on top of it all seemed a bit excessive...for any mom.

I knew it would be a challenge taking all four kids alone to the pool. But not this hard. The hard part should be the baby, right? The stubborn two-year-old?

The baby sat quietly in her carseat and the two-year-old obediently held his brother's hand and trotted alongside us.

After all, I was doing this for Addison. Her speech therapist said it was helping with lung development. Her physical therapist said that her swimming was helping build good muscle strength. We have this pool membership- for Addison. Why was she making it so impossible to make these weekly trips?

And so I sat in the car, unmeasureably frustrated. This bolting thing had been a problem for a long time now. Why does she bolt? What was I missing? Why oh why did she randomly run away so quickly that she disappears for long minutes at a time? (You will recall the time she escaped our house and hiked up an extremely busy road a few years back.) This is more than a frustration. This is a danger.

Living life with a bolter is a bit like driving an old rusty pickup truck (and if you are pregnant- which I'm not but have been for a large portion of Addison's life- fill the back of the truck with super heavy stones)- next to a flashy red sports car that delights in revving its engine and peeling away from every stoplight random directions just to see how fast it can take those turns and disappear in a cloud of expensive red smoke. Your job- as the old rusty pickup truck- is to make sure this flashy sports car stays at a decent 25 MPH directly next to you on the main road. No speeding. No turning. No disappearing. No revving. No fancy u-turns to escape you. Oh and the fancy sports car doesn't know it's supposed to only stay next to you. He is fresh off the lot and out to play and twirl around town. Soooo....good luck with that.

Having a child who bolts does not make me a bad parent...or an ineffective one. It makes me a tired parent. Because I can never really take my eyes off of her for a second.

I've tried GPS tags that sent out alerts to my phone the second she moves a certain distance away (btw- not at all impressed with the Buddy Tag). I've tried laminated social stories "Mommy says STOP!" (complete with appropriate signs) We've talked over and over about the danger of running away. I've enlisted therapists' help. I've put alarms on all our doors. I've enlisted brother duty as her watchers. I never take her out in public without a strict plan in place (buckles in the grocery store cart, wagon, holding brother's hand for short distances, having an aide track her one-on-one.)

And honestly as she has grown, the bolting instances have gotten fewer in number.

But with Aaron's work hours, and none of my usual safety plans useable for pool time, I needed to figure something else out or else we could never go back as this activity somehow triggered old behaviors.

That experience was just too painful. And familiar. #ThisIsWhyINeverLeaveMyHouse

It was while driving home in utmost defeat that a thought struck me. The day before this pool outing we had her IEP. And something her speech therapist mentioned to me hopped into my brain at that exact instance.

"We are working on being able to properly identify story progression. First, this happens. Then, this happens. Lastly, this happens."

At school they were doing this in context of storytelling. The beginning of the story, the middle of the story, the end of the story.

Hmmmm. My wheels began to spin. (While driving home. See what I did there?)

I began to wonder if I've been looking at this all wrong. May be this wasn't about me getting her to STOP bolting away. Maybe I was looking at this from completely the wrong direction. Maybe this was about her understanding the order of events in front of her and not jumbling and skipping them out of order- like she was doing to storytelling at school.

In my mind, the

1. Once Upon A Time
2. Series of Long, Interesting Events
3. Happily Ever After

naturally falls in this order. But in her mind, apparently it takes a bit of work to line that all up.

The next time we braved a pool visit (yes, I am crazy, but the boys also looooove it and Carter had promised to be a super big helper with we tried again), I had a new strategy in place.

We returned from a good swim. (She does super well while IN the pool. She's such a little fish! It's just the transition to the car that's tricky) I was starting to get everyone changed when Addison tried to slip away. I dropped everything that I was doing, knelt down in front of her, and said,

"Addison. First, we are going to change our wet swim clothes into dry clothes. Then, we are going to walk straight down that long hallway and to the car. Last, we are going to go home."

She looked at me solemnly and asked, "Home?"

"Yes, LAST we will go home. After we do those other things." I held up my fingers to count them and listed them off again for her in the proper order.

She nodded her head slowly.

She changed without complaint, walked down the hallway without escaping, and proudly walked herself straight to the car (alongside her brothers).

Lucky coincidence? I don't think so.

It made me wonder if when she escaped our house (on a Thursday) to- as she told us later-"walk to Papa's house" (where we go every Saturday night)- that maybe this was a matter of jumbling up "First Thursday, Then Friday, Last, Saturday. Papa's House!" Maybe she woke up Thursday morning and thought, "It's Papa house day!" and just took off.

This whole situation got me thinking about perspective. How easily I get frustrated because I can't change Addison to fit my perspective. "Addison, STOP RUNNING AWAY!" When instead, I should have been changing my approach to get inside her mind a little bit more. And help her fix whatever need was obviously there. Not "STOP RUNNING", but "Why? Why do you keep running?" and fill her obvious need for further instruction of some sort there.

Oh sure, I have definitely tried to get inside her mind before. But for some reason these two concepts clicked with me in this moment. Bolting. Story Progression.

And maybe it's something as simple as just kneeling in front of her and making sure we are on the same page of the current story progression. (Since I obviously can't make up special visual aides to go with every single outing- or hour at home when there is no outing.)

Am I over simplifying it? Can such an easy fix really correct years of bolting?

I don't know. Addison has always been a bit of a mystery to me.

Not that I'd say that I have any of my kids figured out. Because.....yeah, no. Parenting is tough business.

But Addison has always added an extra bit of mystery as she doesn't respond the same way as the others to what you might call "normal" correction (time outs etc).

If one of the boys were to run for the road while we are playing outside- they are immediately sent back into their rooms and they lose the privilege of playing outside with the rest of us for a period of time. This is devastating to them, and they never run for the road again.

I will do the same for Addison, and when she returns outside, she will immediately run for the road again.

Because what might be a discipline problem for a typically developing kid, is not necessarily a discipline issue with a child with special needs. No, it is a form of communication. A way of looking at a situation. So disciplining her really doesn't solve the problem.

Ask me how I know.

(I say "might" because there are definitely times when Addison has discipline problems that look identical to the boys'. But sometimes not.)

Addison is a bit like a luxury piece of chocolate. You have to twist the outside packaging away to truly see and experience the depth of beauty and delicious chocolate beneath the outer layer. A different perspective is available to all who care to look.

You can stare at the gold packaging all day long, frustrated that there is no chocolate. But it's really not the chocolate's fault you don't take the time to twist away the pretty packaging to reveal a different view from the one you initially considered.

I am thankful for being forced to view the world through a perspective different than my own. This is a valuable life experience that Addison gives me- to step outside my comfort zone and understand a totally different life perspective- and even though at times it might be challenging, I wouldn't change it for the world.

I say all of that to say- it's been a long journey of bolting and trying to figure out how to help her through it. I don't know if I've figured it out. My theory does make a lot of sense. And explaining a situation to her in these terms really helped smooth over the transition from the locker room to the car.

Maybe her running to the road during outside play time was a confusion of "Today, we play outside. Tomorrow, we go to school."

Maybe when she escaped church nursery and waltzed down the middle row during sermon hour was her mixing up, "First, nursery. THEN, mommy and daddy pick me up. Lastly, go home." She skipped right to the pick-up part....without us actually being there to pick her up. (A self-motivator, that one.)

Maybe running away at the grocery store was her skipping right to the "THEN, we buy ice cream" (I think this is her life motto. Except there is no "First and last." It's just always ice cream time.

Maybe when she slipped away from her aide at school and went into a random classroom, this was her confusing which class it was time for. "First, we walk in the hallway. THEN, we stop in a classroom for our special activity. Last, we return to our own classroom." She up and chose when to stop in a different classroom when she felt like it was time.

There's a pretty small legit chance that I sound totally crazy. But living almost 7 years with a bolter (ok to be fair- she's only been walking for 5 of those years) has a way of seeping away logical brain cells. She had been doing so, so, so much better. The miserable pool trip (and subsequent outings) really took me by surprise.

But I'm not afraid to go back anymore. Because I have a plan that's been working. And when all else fails:

First...we use story progression reasoning
Then....we use story progression reasoning
LAST....we bribe with ice cream cones.

I haven't had to do the ice cream cone one in a while. I'm going to call that a win.

I've updated a few things on the blog. Things that BADLY needed to be updated. Sorry it took me so long. It's still a bit in progress, but it's already better. The pain-in-the-neck Disquis commenting section is GONE. As a result of this- all of the comments have disappeared until I can figure out how to upload them all back to the normal blog comment section. /-: And the shares are gone too. So if you have ever felt inclined to comment or share, now would be a great time. You know, so it looks like at least one person reads this blog....every blue moon. (-;

Thank you all for your patience with me this past year. I'm hoping to get back into blogging once a week, and dusting off my facebook page a bit more. Thanks for sticking around and for reading.

xo Deanna