Truths found in the seeking

I've started this post several times but haven't had the time, or the clarity to put it all together til now. I'm so thankful for the way God works - when we can see the puzzle pieces falling into place! Hopefully this comes out as it is in my head and my heart!

The last few months it seems like we've had more and more conversations with the kids, understanding things from their perspective. General stuff - school, growing up, living with each other, friends, their feelings, etc. Also it seems like we've had more doctor appointments that have been straightforward about what the kids are dealing with - not just from a health maintenance standpoint, but giving us a glimpse into their day to day (hearing, vision, pain, stimulation, etc). Often, I think we (and really adults in general) forget how big and how real the challenges kids are facing! I know I do! I'm so glad to get that deeper understanding and to be able to talk about, though it often sparks some pretty interesting discussions. With the kids, depending on the challenge they're facing, it can take us a lot of ways, right?  Sometimes we trivialize the issue or their feelings, sometimes wonder why the situation happened to us/our kids, sometimes we blame whatever caused the issue. I've been really humbled hearing from their perspective, challenges they're facing.

When Landon was in this hospital last month, I read an article in a parenting magazine that asked how do you answer the question, "why me? why my child?". There were a lot of answers in the article from parents (and I think I would've answered this a lot of different ways over the last 6 years!), but the point of the article says our "answers will vary, but the importance is in seeking our own truth."

How true is that! In any change that's done to us, is natural to question why and try to make an understanding of it. Our answers will probably change as we move through - as we process, grieve, reflect, live. The quote says the importance is in seeking our own truth. Not taking someone else's, not happening upon, but is found IN seeking what makes sense, what's true for us. 

I think the process of seeking is just as important as what happened (the event, diagnosis, etc) and the truth that's found. Situations will keep happening and I need to continually seek and know myself and the journey I'm on. This isn't always pretty stuff - I know for me, I've wrestled with guilt, blame, resentment, envy for the life others lived that I wish I had (or I had planned). Working through this stuff has also given me crazy joy, gratefulness, hope too. Not going through life with a rosy sunglasses (!), but working through stuff changes you and can help give you a different perspective, right? I've written about this before if you're eager to read about my journey....and it wasn't a one time aha moment! :) 

Landon's last hospital stay, he ended up struggling to breathe on a ventilator because he aspirated his vomit from a seizure. There's definitely been "why my kid" thoughts, but that's not helpful for me. The overarching TRUTH I was reminded of yesterday at church, we live in a broken world, we're human and God is using us, our situations to show us Himself. God's plan is to bring us closer to him. So there's no room for the "why me, why my family" comments, it's the chance for us to cling to God. When we continue on in the challenge, through the challenge, despite the challenge - It's in those moments that it's obvious it's not us, but God! Use us, do a good work through us, bring Your glory!

In the conversations we've had with the kids about how they tick - they could be different yes, but no worse than anyone else...they're still beautiful creations. We're all jars of clay created not of perfect gold so God can use us and He can been seen. If we were perfect, would we depend on him and would others see Him living in us? 

When we talk about what their friends have said, how they've felt - we're human, but let God help you respond - us respond - and don't find your worth in your friends. Man, it breaks my heart to hear them feel left out, that they're starting to understand how people view others, but continue loving and being you! 

When we understand more from a medical standpoint how their lives are and likely will be impacted, it's frustrating to think of how to adapt, but you do and encourage them to keep striving, learning, enjoying life!

There's many truths and my journey has helped me really start to understand them. God is enough for all the challenges I'll face. Sometimes I need reminders when the the challenge seems bigger and more central. Perspective...Jennie...perspective! I pray I can help my kids turn to Him or start to straight up rely on God. I know they'll find their truths as they grow, and need to seek and find in their own time. I'm thankful for what my journey has taught me so far and the promise of what's ahead!

Chaos and Keeping my Eyes Above the Waves!

I honestly started this post months ago, but can pick up right where I left off because quite often lately I've been at my wits end with the kids and this whole parenting thing..I'm so thankful for a perspective change that has helped me break my cycle - just wish I would've turned to Him sooner! :)  I honestly don't know why, but I didn't think to bring my daily struggles, emptiness, from parenting to Him.  He's proven time and time again to take care of me with the big stuff, why haven't I given Him my daily?

There's been a lot more going on at work and outside of work, (it's IEP season for 3 kids, finishing some home projects, Owen's trying 2's, to name a few...) and it's not uncommon for me to feel behind the ball a bit.  Collectively, it feels like the kids have known the buttons to push and when my stress level are high, so when to strike! I know, they're also triggered by my stress but when I'm feeling like that, logic isn't really top of mind.    

I talked with Brennan, Hailey, and Brooke (to the extent possible) about what I saw as things they could do more of to help out. I feel like I'm repeating myself far too much, giving instructions for what I feel should be expected, really wanting (needing!) them to step up their game to help ME out.

Some of those talks went ok, but the change didn't last long (because they're young!), other times they were filled with emotions.  In one of those emotion-filled conversations with Hailey, she said it's just hard having 5 kids, I didn't see what she needed, etc...and she was right.  She knows she needs to be a team player (and is in so many ways!!), but looking back, she also needs to feel seen and heard.  The stress and emotions are catchy and Landon starts crying, Owen runs and gets into what seems like everything.  So easily, Brennan gets extra upset by all the energy in the house in the moment and has a hard time calming down.  Brooke talks louder to be heard and comes into the room, everyone's tolerance is low - and now we have a chaotic time.  Moments like this I crave the quiet and the still water mentioned in Psalm 23:2.

But today I realized, the rest of the verse - I don't happen upon the still water, the Shepherd leads me beside still water.  I need to be following the Shepherd and be listening for Him.  In church today we sang Oceans, by Hillsong...here's the lyrics I really needed -

"I will call upon Your name

Keep my eyes above the waves

When the oceans rise, my soul finds rest

In Your embrace

For I am Yours, and You are mine"    

I was hoping for my eyes to stay above the waves on my own, but I need the Shepherd to lead me to the still water and I need to recognize I can't do it on my own, I need to call upon His name.  I will find my rest in Him.  I've felt pretty drained and let the things I'm doing add stress because I'm not finding daily "fill me up" rest in His embrace.  At church today, I really thought, has it really been a week since we've been to church?!  It has!  I need His embrace to keep me even keel - above the waves.

I wrote an apology letter to Hailey during quiet time and she wrote one back and gave me a deep hug, telling me how much she loved me.  Brooklyn finished up her all about me questionnaire tonight and she was asked who do you admire - and she said mom.  I'm thankful for the fill me up today!  My joy, my rest and my strength comes from You.  Not just in the big, but EVERYday!   

Happy New Year 2016!

We rang in 2016 celebrating in Orlando, FL this year! A great way to end a fun surprise Christmas family vacation! 

Trying to squeeze everyone in the picture! 

"Chinking" our glasses and everyone thinks it's hilarious to give bunny ears!

Serious pose (apparently!) of the boys! This was Owen's first time having sparkling juice and he LOVED it!

I really love to reminisce a bit and look back over the whole year, seeing a bigger piece of our life's puzzle each New Year. See where we're at as a family, each kid individually and our relationships together, what's important to us, how we've grown, what we've accomplished, etc. It's a reminder we're on a journey and growing. Our lives are paths that can be winding - they should and do change - we need to keep growing! 

At church we've been talking about ensuring our navigation is set on course, if even a few degrees off, we'll miss the mark planned for us. We can realign Who is our compass, adjust our priorities, remove distractions but need to be able to hear His voice to guide. That's been really powerful for me. To strive to live intentionally, not just get by, survive, reflect, but be present and focused so my actions, words, and attitude are intentional and in line with God's perspective. I've been fortunate to have supportive friends (and husband!)  to help lend His perspective when I get caught up in the short sightedness of situations - work in progress! :)

Looking at 2015 as a puzzle piece, or season, it truly has been one of discovery. I'm so thankful for that! We've embraced our family, intentionally invested in our faith and building a foundation for our kids, had many meaningful conversations, tried new techniques and therapies in development, parenting and discipline. We're finding our routine and navigating through new experiences, supporting each other and loving each other.

We also took 2 awesome family road trip vacations to Massachusetts and Florida that we're sure to remember! We survived and had a lot of fun! Nich and I celebrated 10 forever years of marriage! Landon had major surgery (double hip reconstruction) with a long recovery. Hailey, Brooke and I got involved in American Heritage Girls. Brennan and Brooke finished their first year of general Ed with flying colors and started in the same Kindergarten class! Brennan's learning Braille and Brooke and Hailey are excited to read with him. Hailey joined Kinex program at school to support fellow students with disabilities. Brennan and Brooke worked through challenges on the bus. Owen started talking and is continuing to learn and grow!

So as has become our tradition, the kid's came up with their New Year's Resolutions: 

- Hailey: to make a Hershey Kiss (We planned our next vacation to Hershey, PA and Virginia!)

- Brennan: to make marshmallows

- Brooke: to show others love 

each day

I love seeing a glimpse into what's important for them, or just what's on their mind :) We'll see how we do this upcoming year! Here's to 2015 and looking forward to what's in store in 2016!

The New Piece of Brennan's Sight Journey

Brennan's vision has been a challenge since he was born; his prematurity and underdeveloped eyes, then compounded by needing so much oxygen for so long did quite a bit of damage.  It's been quite a journey trying to understand what he sees and what he needs to see best.  Each stage brought different pieces of information, levels of understanding and ways of trying...
  

When he was a baby, we relied on the doctors and tests to tell us what he could see and when he needed more surgery to help reconstruct his eyes from his retina detachment and strabisimus but we kinda needed to wait til he grew up more and his eyes developed more to learn more.

When he was a toddler, a lot of other issues came into play that clouded the picture - as he started walking, we learned he had a balance disorder, but that also looked like it was because of his trouble seeing.  He loved to bounce and we learned he had sensory processing disorder and needs high input, but it sure looked like he was trying to move his head & body to keep up with his racing eyes.  We also started noticing that there might be problem with his vision field (not just the strength of his glasses prescription).  He started talking (a bit delayed) then we could FINALLY ask him what he sees!  He had some cognitive delays that impacted his comprehension of our questions & his answers, speech delays and mumbling that made it hard for us and frustrating for him.  We did learn that he could make out some images from a distance, but to focus, he needed to see the object from the bottom left part of his left eye.
 

When he was a preschooler, the schools and therapists got involved, along with daily learning at home.  There was a lot of focus on new learning that challenged him which (good & bad) really brought out the deficits and the need to figure out how to help him communicate.  He worked on learning academically and relaying what he was learning.  We kept trying to sort out sensory, balance, vision, possible cognitive delay, emotions and behaviors as he faced new experiences, expectations and challenges.  Some things are easy to sort out, some crossed issues and others we're still not sure...  School introduced several new techniques, large print and even a large touch screen computer!  He was so eager to learn, willing to try new things, excited, but also got frustrated and wanted to do more at times.  He mastered recognizing his letters, numbers and colors!  His brain grew so much but couldn't get it out fast enough!  He really made so much progress during preschool!

Now, he's a Kindergartner!  We're continuing to sort things out, determine the best strategies to help him learn, navigate the world - and he really is doing great!  He can walk down steps, put on shoes, find things he's looking for by himself.  This year in school he's focusing on reading print and writing which are really hard for him.  He can use the computer well, but we tried large print, writing with dark markers and haven't been successful to his standards yet.  He can't read what he's written, or tell what he's drawn afterward and gets disappointed.  The books are blown up so large, the papers are clumsy to use for him and he's gotten frustrated.  Don't get me wrong, he's such a happy kid still and it's hard to see him get frustrated!  The newest thing this year we've tried...Braille!  He was getting pretty frustrated and he is so smart, we needed to try something else.  We talked with the National Federation of the Blind representative and the school vision specialist introduced it this week and he embraced it!

I'm not going to lie, I was excited about him trying Braille when we were first talking about it, but now that it's a reality, it took a bit of acceptance.  I'm so thrilled for him to have a great method to read and write!  I'm also a bit overwhelmed at needing to learn another language and the thought of another adjustment for our family.  The day he learned about Braille, we talked about it at dinner and Hailey was so excited.  She had just learned about Helen Keller and how important Braille is for people to communicate!  She asked Brennan what class he learned it in so she could join him one day to learn too...precious girl!  I've said it before, but she is the perfect sister for these kids. :)  After he get's a good handle on it (or probably while he's learning too!) we're going to all learn together so he can read to us!  Of course, he'll continuing using his vision too, but knowing Braille will make communicating less frustrating for him - he'll have another tool and not have to work so hard at it.  It's another adjustment, but we've been through quite a bit of adjustments already and are starting to know the drill.  Don't get too comfortable with status quo - there's always something else in store!  

Welcome to Our Family

What a great project we made over the weekend - a welcome sign for our front porch with Hailey, Brennan & Brooke's input to describe just what we were welcoming people to!  :)

Welcome to our Home.  We're Loud, Crazy, Unique, Snuggly, Playful, Friendly, Real & We Believe in Each Other! 

We had a sign that needed some repurposing love and Pinterest inspired idea that we totally made our own!  We sat around the table and Brennan, Hailey & Brooke came up with the words that describe our family then voted on which would make the sign.  We also came up with: accident-prone, kind, messy, energetic, fun, loving, happy and curious.  It was so interesting to learn how the kids would describe our family!

Lately, we've had a good share of good times and rough times; I keep reminding myself that's part of parenting and raising kids to be adults with sound values and good adjectives that describe them too, right?!  My New Year's resolution was to get to know each of the kids better and deeper, focus on building the firm foundation.  It hasn't all been perfect, but we've intentionally worked through emotions, attitudes, tiredness, to try to create relationships and a home of feeling safe, understood and supported.  This project gave me encouragement that we're on the right track!  We've had it on the porch for a few days and the kids have said something or smiled about it when they come in from school.  It turned out well, but the process of making it was awesome!

Lesson on reliance and dependence thanks to a spica cast

We knew in advance Landon was going to have major surgery. The news was sprung on us pretty quickly but we had time to adjust, research and ask questions about recovery but no amount of planning can totally prepare you. Sure, the organizer in me wanted to know the surgical plans, how to diaper him after, what equipment I needed, his care schedule for recovery, along with about 200 other things...just ask Nich! :) But, planning only took me so far. There was a world of emotions, unexpected parts of this hospital stay, small complications, a bunch of things out of my control - just waiting outside my plans...waiting for my emotional breaking point. I've realized today, and appreciate the perspective of a journey of preparation versus shorter term planning. 

When the breaking point happened (and I can't kid myself, it always does - sometimes large, sometimes smaller, sometimes internally, sometimes externally), what do I do? Who do I turn to? Planning takes you so far, that's something I can do; but God prepares us...way more than we know. No matter the specifics, we can get through it because His preparations are the real deal, things that stick with you, mold you. That takes faith, that's dependence. All along, God's been preparing me, us really. Other hospital stays, surgeries, deep points, I've learned the long way, God's really the one who we need, who is in control, who's enough. 

So, I've had a couple breaking points already thanks to this darn spica cast and I'm not running from them or hiding them. They're reminders that I'm human and so in need of Him! When I'm exhausted, frustrated, scared, I have to consciously remember God's taking care of Landon and orchestrating this life. We're His hands and feet, but it all comes from Him.  I need to remember that He gives me peace when I'm scared, a clearer mind when I'm frustrated, strength when I can't get up to calm him again and He gives Landon comfort when I can't and peace when he doesn't understand what's happening. Our pastor talked about eternal moments - you can recognize them, when we invest in things eternal, see as God sees, act as God shows us to; sometimes we're the way He brings these things to each other. I see it when I do know how to comfort Landon, when he smiles after a tense time or laughs and shows me pure joy, through so many of your prayers, help with the kids, meals, visits! He's shown me so many times before - the beauty and peace that passes all understanding when we rely on Him.

In one way or another, I truly believe (and can see!) how God continues changing and preparing me for what's up ahead. Today, how oddly thankful I am for the difficult hospitalizations in the past that built up my endurance, advocacy and bond with Landon to be prepared for this spica cast. A quote by CS Lewis, that I'm sure I've shared before, just resonates with me - "God, who foresaw your tribulations has specially formed you to go through them; not without pain, but without stain." We're only at the very beginning of this recovery, and I know it's not going to always be pretty, but it's going to mold us. I pray it molds us well! 

Hip Reconstruction Pre-Op

About 6 weeks ago we learned Landon needs a bilateral hip reconstruction surgery.  At that point, his right hip was only 20% in socket and the structure of the socket is not fully developed to hold the femur.  The tendons in his hip and groin area are really tight, so they'll cut and loosen them to add more flexibility.  It'll be about a 4 hour surgery, in the hospital for a few days and then recovery in a 6 week spica body cast.  I know recovery will be difficult, painful and long but we hope it'll be so helpful long term!

I've had time now to digest the shock and come up with a ton of questions!  At our orthopedic consult I had no idea his hips were so bad and that surgery was our only option.  Brooke came along for the consult and Landon was in pain from the assessment, there was too much on my mind to really comprehend what the surgeon was saying at the time.  It was probably a good thing - she helped ease hearing the news until I could understand more. :)

Today was his pre-op appointment - new x-rays, blood work in case he needs a transfusion, anesthesia consult...and answers to my questions!  I talked to another mom who's son had a spica cast and learned great tips for positioning and diapering and found tips online too!  The kids understand what recovery will be like, as much as any of us can prepare.  We're going to do our best to have Landon be part of as much as possible.  Recovering is 6 weeks in a body cast, roughly 6 months to get back to baseline (for typical development, we'll see!), 12 months to begin making progress again.  It was really discouraging, especially since he's been about his progress this season but we know this is the best thing for Landon to be in less pain and more mobility, and need to have the end in sight!      

Surgery Day in 2 weeks!  Keep him in your prayers!