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Tuesday, January 2, 2018

a year in review



A fresh new year. A blank slate.

I love it. I love things that are blank, waiting for someone to make their mark. I love mulligans and do overs and taking what you've learned to be better and do better. But in order to be better and do better, you have to look back. You have to squarely check out how things have gone, good and bad. And why they went that way. You also have to know where you want to go next and how you're going to get there.

2017 didn't see much action on the blog, since I come here to share the more casual things in life and, well, life is less casual and more crazy this time around. So perhaps this is will be quite the catch up!
With my notepad and pen in hand, it's time for your year in review.


  a new job

Our family quite literally began last year in a new way with J.B.'s job change. For those of you that know us personally, you know that this was beyond major. J.B. has only known 60-70 hour weeks. He has endured four different companies to be sold out from under his position and wave after wave of contract changes within positions he retained. Murphy's Law, indeed. It was hard. Hard on me and hard on him and hard on the kids. We trudged through very difficult finances and pressed on with a lot of long days at the office and solo parenting at home. It wasn't working. We were all falling apart. At the same time, J.B. was also networking for a specific job change. After two years of networking with a company, their contract allowed for an opening. In January of last year, we were elated when J.B. started the job he had worked so hard for!

In the last year, that company has gone above and beyond anything we could have expected. They have sponsored spina bifida fundraisers for Eliza and even changed their insurance policies to accommodate her health care coverage. We're now a full twelve months in and we still don't take this for granted. We spent a lot of time in the ditches, y'all. With greedy companies and bad bosses and hard paychecks. For years, we prayed and we waited, and we waited and we prayed. It took time, but God delivered in ways we couldn't even imagine. He gets full credit for starting our last year off in the most tangibly good way!



our ever-surprising gal

In January of last year, Eliza got her first wheelchair. It was a bittersweet moment that many other wheelie moms understand.  

She needs this, and that's horribly hard. 
but
Look what she is capable of with this, and that's incredible!

Kick started with the addition of her chair, Eliza grew and developed in wonderful ways in 2017. Her determination to beat any odds possible left us grinning time after time. She is independent, strong, and hard working! She's advanced in so many areas and resolved to catch up in other ways. Can I just remind you that she. is. two!! These were not traits we expected out of a toddler! This personality of grit has shocked us in the best way. God clearly had so many intentional plans when He knit her together. I'm so thankful for how well He knows her and us.



Jake... just, Jake.

2017 was definitely the year that Jake had us scratching our heads. The more this boy learned, the wider our eyes got. We had him tested and spoke to professionals and quickly determined that the way his brain worked was far from average. It was exciting and amazing, but also heavy. J.B. and I believe strongly in growing our children in whatever ways they need to have them be the very best versions of themselves. So what would we do? Well, we spent the first half of the year trying to figure that out. How can we keep him challenged? How to do we best let him grow in all areas?

Despite my preconceived notions and anxiety towards a whole new path of life, I started homeschooling Jake in August rather than sending him to kindergarten.

Jake has thrived! He loves learning! He loves the extra time with his family, the intentional time we make for friends and play dates. He is the homeschooling dream kid and I'm thankful for this special time with him, however long it lasts. I know Jake is going to do some amazing things with that big brain of his. 2017 showed us the tip of the iceberg.



our new place

Y'all. This one hits me right in the feels. 
 You're welcome to go to this post and read all the nitty gritty details about how desperately we dreaded moving and how impossible accessible house hunting seemed. It's been a little over six months since the official move and I still sit in the middle of my living room and stare in awe at where we are. I can't shake off my amazement! Just to know how painfully long that "need" list was with the house hunt. And how out of the park this home smashed that list. We could not dream of a more perfectly fitting home for each of us! It still brings me to tears to think of how faithful God was to us to lead us here. 



advocacy

One of the biggest ways we grew and made strides in 2017 was as advocates for Eliza. Being a special needs parent is hard. I think everyone acknowledges that. But not everyone knows the battles that are daily fought and those that need fighting. 

2017 pushed our buttons. There were many, many moments when the world told us that our daughter isn't valued. She's not worthy of basic kindness. She's not worthy of healthcare. She's not worthy of being allowed to attend things. She's not worthy of a space to play. Several times, people have even told me that she isn't worthy of the very life she has. Like many of you within our bubble, we just couldn't believe that this was all our reality. Surely it's just dramatics, right? We can poke our heads back into the shell at any time and pretend this ugliness didn't exist.

But we couldn't. Eliza deserved more. 

So this was the year of pushing back. Of challenging the companies that gave us a hard time and confronting the people that dare say that there is no space for her. This was the year that I said over and over and over again that her life has deep, impactful value. We lived it everywhere we went. It was awkward more than once. People don't like change. And they don't like being face to face with the idea that the way things have always been done might not be inclusive or kind. But the challenges also grew us as parents. It allowed us to realize that yes, we think of Eliza and those with her same battles, but what about others? Who else is struggling? How can we help? 

In turn, it also grew our friends!

 I saw comments on city splash pad plans - "Let's make this accessible so all the kids can enjoy it."

 "Sarah, have you seen the Caroline's Cart at Target! They have it for shopping with kids with special needs!" 

"Yes, I planned the birthday party at an accessible playground so Eliza could come and play like everyone else." 

"I saw this ad in the Gap clothing line! This kid has a walker just like Eliza's!"

Without any prompting from us, in 2017, Otteroo asked to feature Eliza in product articles and online. Matilda Jane Clothing hosted Eliza in  Chicago to model in their lookbooks, website, and in social media ads. Same Cloth created a tshirt design and campaign that every soul could nod along with, and that featured our gal's story.

She was becoming a part of the world she already lived in. People saw her. They really saw her, as a kid just trying to do life. They asked, "How can we do better? How can we include Eliza?" And with each of those little moments, my mama heart swelled. We were doing it! We were living this life and Eliza was making a difference!


So many beautiful things filled 2017. Moments I will cherish as long as I live. 
But it wasn't always pretty.  






I won't bullet point this side of things as much, but I think the hard aspects of 2017 can be summed up in two words:
We did a lot of 2017 very on our own.

As beautiful as the end result of advocacy can potentially be, it is often times very lonely in the middle of the fight. And even worse, it is overwhelmingly devastating when people make the ultimate choice to deny your cries for kindness and inclusion. There were many, many victories last year. But 2017 also held a few major losses in the way of close relationships that declined to accept our daughter as she is. That, my friends, is hard living. There was a lot of tears, every day heartache, and difficult holidays last year. I couldn't understand how this sort of ugliness was really a part of our lives. I still don't. But I think I'm learning to better fathom to depth of man's depravity (mine, along with anyone else's) and be even more thankful that the grace of Christ saves us from this awfulness.

Part of the loneliness in this life is also the busyness of it. About the time I finally managed a schedule of daily in home therapy, doctor's appointments, equipment appointments, and physical therapy with Eliza, I added homeschooling Jake in the mix. Suffice to say, it is a very very hectic phase in life. And a phase that desperately needs more personal recharging and more reconnecting with my other half.

Oh how my plate is so full this year. Full of amazing, wonderful, beautiful things. Did you read the first part of this review? Goodness, what a year!! But the plate is indeed full, none the less. Picking and choosing among priorities isn't quite an option for us because its all important. I can't empty my plate this year. However... I can share it.




I desperately hope my worldview gets bigger and includes purposefully loving more of the beautiful people God created. I want this faith to grow stronger. First, in growing Christ and secondly in growing inclusion.

I must carve out some very purposeful "me time" to keep my mind focused and myself recharged. I will attempt the courage to hopefully find a regular babysitter to spend quality time with J.B..

I will keep sharing my heart. Transparent sharing is can be hard. But it is pivotal in showing others that we're all in this together. That we all have the same hope. Our hope doesn't come from new jobs, perfect homes, or even accessible playgrounds, but instead, it comes from the amazing grace and unending love of Jesus.




Cheers to 2018, friends! May it be our best yet!



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