Saturday, October 10, 2015

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!  

Tuesday, October 6, 2015

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!

Saturday, August 29, 2015

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! 

Thursday, August 13, 2015

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!

Tuesday, June 9, 2015

Progress in His time

Lately Landon's had a season of progress!!  I'm so incredibly thankful, proud, bursting at the seams excited for him!  I'm so much more grateful for the steps he's making because of the past he's carried - the days in the NICU, the depressing prognosis, previous seasons in his life.  Tonight despite the absolute thrilling video I shared with so many that pray and encourage us, I reflected on the seasons of Landon's five years and what I've learned these five years.  Before I get into that - here's the video!  I stopped by school today to meet with his teacher and saw the little man wheelin' around the classroom!  



Forward, backward, one arm, both arms, wheeled himself in a circle and even straight towards me!  

Here's a few other videos of the progress he's making! 
 


He's supposed to be sleeping...but he's so vocal!  I remember wondering if he'd ever make a noise!


Landon playing piano along (and singing a little!) to Twinkle Twinkle in music therapy a few weeks ago!  He's intentionally hitting the keys when the therapist waits for him!  He's been making noise in pitch too!  

Can't you see how stinkin' exciting this is?!  The prognosis for a 23 week preemie is not very good; we knew it and heard it from the professionals many times.  But were comforted just as many times that God gave us these kids for a reason.  It's our job to care for them, love them, nurture them, teach them, encourage them - I didn't know all that entailed at the time, but we had signed up for the job.  

As Brennan, Brooke & Landon, especially, have gotten older, I've been able to see the seasons of their lives.  Not the developmental milestones, but Ecclesiastes 3:1-8 seasons...There's a time for everything.  Each season prepares us for the next; what we learn from God, our relationship with Him, how to navigate the circumstances that we experienced, etc.  

From that perspective, I can say, I'm thankful for the NICU season with Landon.  He was frail, we were young and didn't have much medical knowledge.  I was weak (in many ways and had to learn to depend on Him).  We had so much support from those that loved us (practical help, prayer, encouragement), learned so much medically, how to care for frail babies while surrounded by experts!  Of course there were experiences in that season, I'd rather erase or not have gone through - and I'm glad that chapter is closed!

Next, the trial run at home, his first 2 years.  He was still frail, we were still young but armed with the knowledge, confidence, tools and continued support.  He spent a lot of time still in the hospital, the other kids and rest of our family adapted, learned how to accept and ask for help when we needed it.  We tried to fit in developmental activities, therapy, etc between clinic appointments and hospital stays as best we could.  We practiced our advocacy, negotiating and flexibility skills working with professionals for Landon's best interest.  I grew as a parent, Christian and person.  I think we were still focused on survival, trusting our instincts and getting to know Landon.

The next season was a bit of a relaxing lull for him, he was pretty apathetic - was content with any activity and didn't show much drive or motivation.  We continued to figure him out; what he liked, didn't like, how he communicated, how our family operated (then added another kid to our mix!). Landon made slow developmental gains but that was alright for us, since his body was recovery so much medically!  Hospital visits were so much fewer but we were still operating on super speed so the lull was a bit hard to adjust to at first.  There seemed to be so much pressure to get therapies taught by age 3, so I needed to accept as a mom, that we did our best and he was happy.  It definitely took God's understanding to appreciate Landon's own timeline; accept that he'd continue to develop, just at his pace. There were points of progress that encouraged us along the way at seemingly just the times I needed them to not get discouraged.

Now, enter new season...age 5 and the three video's posted above!  Now we're in a season of change and development for Landon and I am ABSOLUTELY thrilled!  I do need to pinch myself, because it's hard to forget history and remember the previous seasons, especially the first 2.  Now his motivation is in overdrive and we're needing to incorporate that into our routine.  He's known to actually throw a bit of a temper tantrum if he wants something different!  Problem is, it's hard to know what that "something different" is, without trial & error or paying close attention.  I don't want to ride this season too long, or be too skeptical of the season.  Landon is doing fantastic, and I see this season as such a blessing!  Blessing to me and certainly a blessing from God!  

If you're reading this as a special needs parent, or parent in the NICU, I hope this is encouraging to you.  There's such a sense of new beginning once your child leaves the NICU, begins life at home, with or without medical professionals at home, entering school, etc.  It's been so helpful to have perspective and see times as seasons, not only where Landon started, but how he's progressed and how I've progressed throughout each season.  Thanks for sharing in Landon's excitement!  

Sunday, March 29, 2015

Reaching Contentment

This has been going round and round in my head and my life for the last 5 years, and I'm so thankful God's put all the pieces together and I can honestly say I've reached a point of contentment in my life, and man is it freeing!  The - It Is Well With My Soul type of contentment!  This post is largely for me to mark this stage in my faith, personal and parenting journey, but also maybe to provide hope for somebody that's on the doorstep of being content.  When I think of being content, I thought of Paul's words in Philippians 4:12, when he wrote of having lived in plenty and and in need, hungry and full, but it's taken on a new meaning for me.  Not just in material things, but in concepts.  The secret of being content is in Jesus and only through Him, and for me was through a journey of other big words and seasons - Regret, Struggle, Acceptance, Peace and Joy.

5 years ago our lives were turned upside down....5 years, 6 months and 5 days to be exact.  Brennan, Landon, Katelyn and Brooklyn were born 17 weeks, 6 days early and we had no idea what was in store!  Three days later Katelyn died, many times in the weeks shortly after, Brennan, Landon and Brooklyn were very critical and Landon many times still in the last several years.  I've cycled through different periods of grief.  Grief over death, over changed dreams for my kids, over seeing my kids live a of special needs and everything that comes with it, over changed relationships.  I had so many real struggles with what-ifs, wanting to change the past or situations, regret over not doing enough therapy with them, anger toward my prenatal doc, comparison with healthy preemies - you get the picture...regret and real struggle.  Most of my kids beat the odds - 3 were alive and making progress and I desperately wanted to believe the cliche, "I wouldn't change a thing." I was/am thankful for the experiences we've had, people we've met, perspectives I've been opened to, but I couldn't buy in.  Who would willingly choose to loose their daughter, see their kids live such difficult lives?  Real struggle here.  Apart from my own internal struggle; parenting in general is hard - parenting kids with sensory issues, cognitive impairments, physical disabilities, explaining these to Hailey and each other and encouraging each of them to see each other for the beautiful person God made them but being free to work through their own thoughts, feelings and questions and grief - sometimes we did well, sometimes not so well and need to ask the kids for forgiveness and help!

I tried to do this on my own and change my attitude when needed, but I'd get knocked off center, just the normal challenges of the day (of course, in retrospect, right?!).  Dog gone it Jennie - Trust in the Lord, with ALL your heart, lean not on your own understanding.  Not part of it, not the easy parts, not the parts I think I need work on.  Give myself to Him and see the plans and paths He has for me.  Now, the human side of me still struggles with why me and why the kids, but - why not us?  Things happen, there's evil and bad situations in the world.  But I HAVE FAITH that He has a plan for me and for us for His plan, not just for my life.  Throughout the situations that come up, He will comfort us.  He will give us peace that passes all understanding.  He will take care of me and my family.  I love this quote from CS Lewis: "God, who foresaw your tribulation, has specially armed you to go through it; not without pain, but without stain."  We're not meant to live an easy life because we're Christian's, but when we experience God taking care of us, that's a show stopper.  When I was in the middle of the regret and struggles and sought Him, I never felt such peace.  I certainly am thankful I haven't had a life of daily battles, but the depths have magnified the joys.


This picture of Brennan and Landon is a snapshot of that - their relationship means SO MUCH, especially because of the life they've already lived and all that's impacting the life they're living!

Now the next big word, Acceptance.  I accepted diagnoses (though difficult too!), the modifications we needed to make at home, changes in how we parent and talk to each kid but also convey expectations for what they can do, changes in relationships, different lifestyle, many of the outside stuff; and my heart accepted my new life.  This stuff is hard, but I've accepted it's necessary.  That's the part of the cliche I would buy into, for as different as my life is now than I had planned, I wouldn't trade these kids.  Brennan, Landon and Brooke had a 15% chance of survival and I am blessed to have them, I remember that everyday.  I think Contentment is beyond Acceptance though.  Once I feel content, I can truly look forward, not just backward or in the day-to-day.  Maybe it's just semantics, but for me, it was a difference and has been in lots of areas.  



I just love the joy, love and laughter on their faces!  There's so much going on bigger than they know, but they don't worry.  It is what it is! :)

I think true Peace and Joy for me has come after I've become content with my life.  "The secret of being content in every situation..." is from God.  He's prepared my heart and changed my heart.  Situations aren't necessarily going to get easier, but how I navigate through them is.  I'm not fighting them (or the overall picture of my life) - I'm going with the flow, because I trust the Creator.  When I'm going with His flow, I'm aware of the teachable moments for myself or with my kids, I have energy, peace and patience for the challenges - I'm not leaning on myself.  I've seen parallels as I've had different seasons in my life - pretty sure that's God at work, getting me ready for the next thing in store, understanding Him better, understanding my kids better, understanding how He made me better; and I'm really excited!  



Never in a million years would I have expected to be living this life, but I'm thankful I serve a God that's bigger than my expectations and carries me through, no matter the specific situation or season!  

Thursday, January 1, 2015

2014 Year in Review

The greatest thing about New Years for me is a time for reflection and looking forward to a newness!
I'm so thankful things are slowing down and I've actually HAD time for reflection!  2014 overall has been a year of exploration, discovery, and understanding in a lot of different ways.  Big milestones...at the tail end of 2013, we welcomed our newest...and last addition, Owen!; we became farmers in training with a much bigger garden and 10 ducks; I graduated with my MSW; Brooke & Brennan started general education classrooms with support; Hailey started 3rd Grade; Landon's continuing SXI at the local special education classroom.



Apart from those type of milestones, we've also reached a sweet spot as a family.  We're out of survival mode and assembly line care (mama's of multiples will understand!) and Brooke, Brennan and Landon are really growing into their own which is so helpful!  As they're growing, I'm noticing how different (and a little similar) they are.  And Hailey...3rd Grade is the new middle school, I feel like!!!  This is the where the part about the year of exploration, discovery and understanding comes in...


Hailey, Hailey, Hailey...she is so compassionate and really in touch with her feelings!  I've seen such growth and maturity from 2nd grade - summer - 3rd grade....I'm a little worried about what next year looks like! :)  Thankfully her character is developing right along and we've been talking through things.  One night she told me - emotions are tough! AMEN Hailey! Sometimes they do too much of the talking too and they get you in trouble! :)  She had her first major fit with friends at school this past year and handled it like a champ - this is where the exploration and understanding for me comes into play...she's of little words when something's up and I want to make sure she always feels like her feelings, concerns and problems are just as important to talk about (she's said it doesn't seem like a big deal with the other things we've got going on...YIKES!).  Hailey's a critical thinker and also so creative!  We've also had great conversations about how laws are formed and how to get your voice heard, why we believe what we do and why others do.  She designs and redesigns things, repurposes things, plans our parties, etc.  Always keeps it fun around here!  



Brennan is one of the SWEETEST kids I have ever met!  However, he also has a hard time communicating his needs, frustrations, etc. which unfortunately come often as he wants to do typical things but his really poor vision, balance trouble, very impulsiveness gets in the way.  The more I discover and understand, the more we can practice situations to help them come easier next time.  He's so open to it right now and I really want to take advantage of it!  He also LOVES to be super silly, Thomas the Train, and has a great imagination - he's given each of our family members a Thomas the Train character name and everyone plays along! :)


Landon is growing leaps and bounds!  He has done so well medically this past year, I was almost nervous to write that! :)  Without the medical issues being an issue last year, he's also made a lot of developmental progress too!  He's bearing a lot of weight, standing all the way upright often (instead of hunched over), rolling around, getting up on all-fours, intentionally manipulating toys.  To anyone else, these might look like such basic things for a 5 year old, (and they are), but it's HUGE for Landon and for the other kids to see that he's still learning.  It gives us so much hope!  This is where the exploration,, discovery and understanding come in...learning what motivates him, best techniques, what he enjoys and how to get what he needs to continue making progress he needs.


Brooklyn is all in in whatever situation; she's sweet, hilarious, developing a sense of compassion, very independent and very strong willed.  She is in love with Annie, American Girls, Hailey :) and really can enjoy just about anything else!  She's doing really good in Kindergarten for what we expected and know that she'll repeat when she moves to the same elementary school Hailey goes to next year.  The structure and flow is really what we felt like was the biggest thing to master but she's doing really good with reading, and is loving school (and like's the responsibility of having homework right now)!  Brooke also has a great imagination - so many times I need to check if she's talking to me or her toys...generally it's not me :)  The discovery and understanding for Brooke is that all-in piece...she has a hard time regulating once she's crossed the line and the more I understand what triggers, how to snap her out, etc, the better for her and for me :)


Owen is full of life!  He is the perfect addition in many ways.  Each of the other kids have a unique relationship with him and it's so sweet to see!  Owen turned 1 on Dec 19th and started confidently walking ON his birthday! His favorite toy of everything is an old jack in the box, he gets giddy when it pops up! He's so curious, loving, and silly - the other kids love getting him laughing!

As I've learned and understood more about myself and the need and gift to just straight up, rely on God, there's been such a freedom.  A lot has happened in 2014, will continue happening in 2015 and on and as New Years' comes and go. My resolutions are to learn better ways to get through.  Not only get through but enjoy and do His work, in my community and in my family.  For 2015, I want to take time.  Simply put. Take time fueling my soul in His word, in community, in service, reflect and learn, be present, spend time together, understand what makes each child (and my husband!) tick, what they need, help them communicate it to me, grow up with good character, help me understand what I need and communicate it to those that love me, the list can go on.

In 2014, our family lost really special people and Hailey reminded me, what I told her a few years ago when some died, "People die, Mom...I'm really sorry, but remember, it just happens?"  Sounds insensitive, but it really wasn't.  We've talked about we're humans, we have a time here on earth and what matters is what we do with it.  We've reflected on the lives they lived and impact they've had on us.  That perspective is what my New Year's Resolution is about; creating deeper relationships, open understanding, aligning priorities.  Here's the New Year's Resolutions for Brennan, Hailey & Brooklyn - the red words are the important part of their dream/wish for the upcoming year.  Pretty interesting and gives us insight! :)


I've been blessed with a pretty awesome family to nurture into another year - here's to 2015!