Image

Image

Thursday, October 4, 2018

Days Fly By

It's Thursday, exactly 15 days since we made the trek to the hospital for Caleb's tympanoplasty surgery.  And I just cannot fathom.  I cannot fathom the miracle that was worked by the doctor's hands.  I cannot fathom a community that showed up at my doorstep with meals, groceries, games, and surprises for our oldest.  I cannot fathom the gift of watching my oldest and my youngest enjoy one another so thoroughly.  I cannot fathom how fast 2 weeks of homeschooling went and the joy it was to watch Caleb learn about tribes native to our home state and how to diagram a direct object.  I cannot fathom the adults, teens, and children who have taken the time to come over and play games with Caleb.  Each day has been a marvelous demonstration of God's grace to us, and we are thankful. So thankful.  The days flew by.

Today I have a little extra time because... Caleb returned to school this morning.  In many ways, it was harder to see him walk out that door this morning than it was to leave him that first day of kindergarten.  We've had a blast, playing chess after lunch and watching old episodes of Wishbone.  Reading literally thousands of pages of our favorite books and laughing hysterically at Emmie's antics.  And it's hard to see the person you have protected so vigilantly... leave.  Leave the safety of the four walls of home.  Fair warning: I'm gonna be a hot mess when he goes to college.

Yesterday we had Caleb's post-op appointment with the surgeon and learned that Caleb is healing beautifully.  His external stitches are healing well, and the doctor removed some of the protective foam in Caleb's ear canal so we can begin treating the new ear drum with antibiotic drops.  At this point, he is predicting that Caleb's hearing in his left ear will be fully functioning in six weeks.  He has been cleared for all activity with the exception of swimming (the ear canal still needs to remain dry). This momma asked SO many questions, especially because Caleb has been struggling a lot to hear well with just his right ear over the past two weeks. 

As he was answering all my crazy questions, the ENT surgeon looked through the audiology reports that were done back in Marion at our very first appointment in August and explained to us that though the left ear had the more concerning cholesteatoma (unhealthy tissue growth), the right ear actually had the more significant hearing loss.  So of course Caleb's not hearing much!  He can barely hear through the left ear and has moderate hearing loss in the right.  This creates no end to frustrating scenarios in our house and makes us wonder how long Caleb has been making it by faking it.

We've been working intentionally with Caleb to help him admit when he's not understanding what we or other people are saying and to politely ask for instructions or information to be repeated, but it is NOT coming naturally to this kid.  I really do think he's been living via autopilot for months.  Completing the expected chores that were on his chart so he doesn't have to hear my requests.  Reading his textbooks at school rather than depending on verbal instructions.  Trying to guess what his baseball coach is whispering to him rather than admitting on the third base line that he has no clue what his coach is saying because in addition to being hearing impaired, he's wearing a helmet lined with foam to protect his ears.  It all makes so much more sense now, Coach Brant!

So we wait.  We wait for the left ear to demonstrate hearing capability, and we'll return to the ENT surgeon in a month to confirm progress and probably to schedule the same surgery for his right ear.  Not knowing how much he actually heard, I asked Caleb over our lunch of pizza at Costco to tell me what he heard the surgeon say in the appointment.  Thankfully, he understood most of the Q and A session the doctor and I had, but when I asked him how he felt about a second surgery, he said, "Reluctant."

Ain't that the truth? None of us walk into painful situations, excited to hurt and pumped to put ourselves in harm's way.  I can totally relate to my son and understand his hesitance.  But I also know that he, David, and I have all seen God's grace in tremendous ways as we have walked this road, which only increases our faith that our God is Jehovah Jirah, the God who provides, and we trust Him.

Still journeying with us?  Thank you.  We need you, and we know that when you say you're praying, you're not just being polite.  You're doing battle on your knees for us before the Throne of Grace.  It's a priceless gift that we can only repay with our gratitude.  Would you keep praying with us that God would restore Caleb's hearing completely?  And in the in-between, we'd covet your prayers for patience as we answer and re-answer questions and help Caleb to make it without faking it for the next six weeks.

No difficult situation in any of our lives is without redemption and purpose in the Kingdom of God, and I firmly believe that God is growing in our family a compassion that would not have been possible without walking this road with Caleb.  God is giving us eyes to see our own impatience as we say things over and over again until actual communication is accomplished.  He is reminding us of His love as friends drop by with a cup of coffee or a hug and a half-gallon of almond milk.  And He is encouraging us the He is Healer and Savior in this broken, sin-cursed world.  We pray that one day both of Caleb's ears will be able to find joy in the gentlest whisper, but even more so we cry out for the restoration story of each of our lives shine His glory to the lost.  Thank you for being our people and for demonstrating the love of God in Body of Christ so well. We could not imagine our lives without you!

Thursday, September 20, 2018

Post-op Charting

It is unbelievable to me the sweet joy and blessing that seasons of pain can produce.  Yesterday was easy and hard, filled with confidence and surges of anxiety; yet David and I could feel your prayers carrying us as the God of all peace was ever near.  I want to respond to every FB message and text to demonstrate our individual appreciation for each of you who prayed or shared encouragement with us, but I'm terrified I would miss one of you.  Your words were seen, read, and used to comfort us.  "Thank you" doesn't seem like enough, but it is sincere and heartfelt.  

Here's what happened yesterday: Caleb was scheduled for surgery at 10 a.m., but due to complications in earlier surgeries, he wasn't taken back until 11 a.m. for his procedure. I was struck by the difference in taking a toddler for ear tubes and walking beside a 9 year old who was full of comprehension and questions.  Caleb was nervous but courageous and thoughtful in his conversations with each of the surgeons who came to talk to us.  I was a proud momma yesterday.

For us the time between 11 a.m. and 1 p.m. passed peacefully. David and I finished books, worked on projects, and took turns getting lunch.  Then 1 p.m. came and went, and my anxiety began to build.  The tympanoplasty was only supposed to take 2 hours.  By 1:45 p.m., I was wound pretty tight and could not wait for the recovery nurse to come get us to see Caleb.  But the recovery nurse didn't actually come to see us.  The surgeon did.

He explained to us that Caleb's ear drum was one of the worst that he's seen.  In order to do the repair and facilitate Caleb's hearing, he had to remove a damaged inner ear bone and implant a prosthesis behind the ear drum to replace that bone.  He also said that due to poor Eustachian tubes, he had to form the new eardrum out of not just a muscle graft from behind Caleb's ear but also some cartilage from the ear itself to add stability to the ear drum.  The extra twists that the surgery took were the reason that he'd need 45 more minutes in the OR.  He also stated that he was hopeful that he had cleared out all of the cholesteatoma (unhealthy tissue) so that it would not come back.  All in all, Caleb did great; and the left ear should begin hearing normally in two months.  Thanks be to God.

It took quite a while for Caleb to be alert enough for us to take him home (2 hours), and the oral pain reliever the hospital gave him after surgery made him nauseated.  Throughout the evening, Caleb would finally feel well enough to eat something so then we would try to give him pain medication, and then he would get sick again.  This cycle continued until we realized that the prescription medication was really the problem and just started giving Tylenol for pain relief.  

Last night was rough. Tylenol is great but has its limitations.  His pain spiked at midnight a while before his next dose was due so we spent a couple of hours of the early morning watching movies and trying to distract him from his pain.  At some point, I realized he had fallen asleep; and we got about 5 hours of sleep before the noise of our crazy home woke everyone up.

A new kid woke up with the morning light.  No nausea.  Controlled pain.  And a deep desire to play the brand new Wii games that a friend had given to him for this recovery time.  He's eaten toast (Hurray!) and is smiling.  He's not done with the pain of recovery, but I do think we're beyond the effects of the anesthesia.

In the middle of the night in the worst of the pain, many things were said about how this was just not worth it. And I get it. For most of my life, I assumed that if I was in pain, I'd done something wrong.  Sometimes that is true, but sometimes... it's not. As we talked about it this morning over a piece of toast, I was reminded that pain isn't always a sign that something is wrong.  Sometimes it's a sign that something wrong is being righted. And that it takes extraordinary wisdom to know the difference between painful, wrong choices and painful, right choices. Praying that on a day not too far from now, my son will know the good reward of this pain. Hearing.  

Your prayers are holding us up (along with an unhealthy dose of caffiene).  Thank you for remembering Caleb (and us) yesterday and for continuing to lift us up to the Father.  He is Healer and awesome in power, and we trust Him.

Friday, September 7, 2018

Say What?: The Autumn We Never Heard Coming

It's been forever since I sat at this computer and typed out anything coherent besides quick emails and facebook comments.  It feels a little foreign yet so good to be able to think out loud through the keyboard and tell a piece of the Grander Story that God is telling in our family's life, but I'm getting ahead of myself.  Let me share with you one of my pet peeves from the summer...

Setting: Me and four kiddos in the van coming home from the day's event.
Ben: What are we having for supper?
Me: Grilled chicken, salads, and watermelon.
Ben: Yum!
Laura: I don't like chicken!
Caleb: Hey Mom?
Me: Yeah, Caleb?
Caleb: What are we having for supper?
Me: (pulls hair out and refuses to answer any more questions)

And this same conversation happened all. summer. long.  And not just because my grilled herb chicken recipe is one of my all-time favorite foods.  Every car ride.  Every time someone asked a question, Caleb would then ask the same question about 3 seconds after I answered the first child.  I was beyond frustrated.  Come on!  You're 9!  Listen!

Finally one day I was sitting next to Caleb on the couch, whispering to him about something, and got zero response. Like none.  I tried to whisper a joke.  No response.  I whispered bizarre promises involving millions of dollars and professional baseball games. No response.  Since he was done with a recent round of antibiotic drops from an ear infection, I called his pediatrician who immediately got us into the ENT (ear nose throat) doctor for a check-up.  I was thinking it would be another set of ear tubes (which would make 8 sets for my children collectively) or a wax plug that the doctor would remove.

But I was clueless.  The doctor used a microscope to remove unhealthy tissue from both of my son's ears and explained that Caleb has an extremely rare condition called cholesteatoma in both of his ears.  In simple terms, at some point, Caleb's ears started rapidly growing unhealthy tissue to try to cover the hole left by his ear tube.  The tissue would die, shed, and fill up the ear canal and was very prone to infection (which we had seen all summer long since swimming season began). Also, it was putting pressure on his ear drum in his left ear, causing the ear drum which should puff out to cave into his Eustachian tube in his left ear.  In order to restore Caleb's hearing, Caleb would need a double tympanoplasty, which involves the surgeon taking a muscle graft from behind the ear to construct a new eardrum in his ear after all the unhealthy tissue is removed.  Our ENT is wonderful and admitted that he could do the surgery, but he had an associate who specialized in this condition and the operation in question so he referred us to his associate in Fort Wayne.

Before leaving that day, Caleb completed a hearing test with an audiologist who confirmed that he had mild to moderate hearing loss in both ears.   We were also forewarned that this was not an easy, quick operation.  The tympanoplasty will most likely be two hours long for each ear and will be a much more involved recovery process.  In addition to caring for the graft sight and not being able to hear from the ear operated on for about 2 months, Caleb will need to stay still for 2-4 weeks following the procedure.  Umm... can we stop here for a second?

Caleb is 9, almost 10. He loves baseball, football, and any game involving running.  After the surgery, he is not supposed to be involved in any kind of high activity games.  No jumping. No running. No wrestling.  No swimming.  He can walk, sit, and eat.  Every 9 year old's dream, right?  This was the information that broke my momma's heart most.  Long surgeries aren't fun, but long recoveries...devastating to a kid who is NEVER down for long.

I left the ENT trying to wrap my mind around the procedure and talk my very grumpy son back from the edge of ingratitude as he grappled with losing 8 gym classes.  Amazing how fast he calculated exactly how many it would be. Man!  He's good at math.

My son goes to an incredible school that cares for his heart and his mind.  As I tried to figure out what our lives would look like this fall, I called the school to get Caleb's teacher's phone number so we could talk through logistics.  The phone in the office rang and rang until my friend picked it up.  It wasn't her job, but she was there and she thought whoever was calling might really need something so she graciously answered the phone and immediately could tell from my voice that I wasn't okay.  I shared with her about Caleb's surgery, and she immediately said, "My son had that same operation with the same doctor! I can tell you all about the recovery, and my son can even talk to Caleb and show him the scar."  Oh my goodness!  I hung up the phone feeling grace and peace wash over me like a flood.  My God knew exactly what I needed to hear.  He knew I needed to talk with another momma who had been there and done that.  He knew I needed to remember that He was so very present in that moment.  One of the things that also came out of that conversation was learning Caleb would not be able to go to recess and really should be kept still.  I confessed that I was considering homeschooling him for the two weeks of recovery, and my friend confirmed that this would be a wise option.  She hung up the phone having encouraged me and given me Caleb's teacher's number so I could chat with her later. Grace upon grace.  But get ready for more...

When I connected the next day with Caleb's teacher, she let me know that she had special training and experience in deaf and hard of hearing education and would be incorporating tools in the classroom to make sure that Caleb didn't fall behind even as he struggled to hear. Beyond blessed.  There is only one fourth grade class in my son's school and it JUST SO HAPPENED that his teacher was specially equipped to meet Caleb's needs in this season. Thank you, Jesus!  She affirmed our decision to homeschool for his recovery weeks and to help us transition him in and out of the classroom well. Check and check!

Now to tell Caleb.  I really wasn't looking forward to this part, but several close friends and one sweet assistant principal promised to pray, and the results were beyond my expectations.  Caleb handled the news of his long recovery at home with grace and a sense of humor.  He wasn't thrilled about not going to school, but he was smiling as we shared with him the many ways God has already made a way for his hearing to be restored and for this year to be one of blessing rather than hardship.

Two weeks later, we went for a CT scan of Caleb's temporal bones and a consult with the ENT who specializes in tympanoplasties.  He decided to wait on the right ear and only plan a tympanoplasty for Caleb's left ear.  He was beyond kind and personable and answered all of this momma's questions.  We feel total confidence that we are where we are supposed to be for this procedure.  So on September 19, David, Caleb, and I will be driving to Lutheran Hospital for Caleb's new ear drum graft.

To the friends and family who have heard us process and share our amazement at God's grace in saving Caleb's hearing, thank you for listening.  Every time I share the faithfulness of God ...to allow us to catch this before the unhealthy tissue did more damage, to grant us friends who have been there, to give us school support like no other... I am reminded of His intense, personal love for me.  My heart beats joy and peace as we look forward to surgery and still peace and joy as I think of having my biggest boy home for 2 weeks.  The days may be long, but I know the years are short.  I'll take one-on-one or one- on-two (with Emmie) time any time I can get it.  If you don't see us out and about, it's because we are home, keeping Caleb in a low-risk environment where he won't be pushed or jostled accidentally.

Several have asked how they could help or what would be entertaining to Caleb during his recovery so here it is: pray.  Pray that the graft heals properly and the infected tissue is removed successfully. I know that my God can be glorified even if these things don't happen, but my momma's heart desires a completely successful procedure.  Pray for our family's relationships through this season of focusing so much on one child.  Pray for his siblings as they seek to love him without the usual full-body hugs and wrestling fests.  Pray for us to reflect Jesus in this process.

Nitty gritty stuff: if making egg-free, dairy-free food is in your wheelhouse or making an Aldi run is your gift, your help would be welcome. Not sure how easy it will be to get out of the house or how time consuming this recovery will be for me as momma.  If writing encouragement notes is your gift, I would love to collect notes from family and friends so that Caleb had some sunshine for each day of his recovery.  Also, if you are good at playing board games, Caleb would love to have someone new to whoop at Monopoly or Catan.  Kid friends are welcome to visit and play board games if they understand that Caleb cannot be touched, high fived, or hugged.  Depressing, I know.   If you don't have my contact info, just let me know in the comments and I'll make sure we connect.  But most of all, would you pray?  I'm prone to anxiety yet amazed by God's peace protecting my heart and mind from discouragement and fear.  And thanks.  Thanks for being the Body of Christ who walks with us in the sunshine and the rain. It's an honor to be a part of this community.














Tuesday, December 20, 2016

A Bookish Post (Kid Lit edition)

In the chaos of raising four kids that look like my husband and me, but (I swear!) are way more stubborn than I ever was and can hit octaves with their screams that would make Kristen Bell jealous. there are times when I just need downtime with my kids.  Not away from my kids (although, if you're offering to babysit, I'm not going to turn you down), but with my kids.  I want to share in a journey with them, meet a new friend, or laugh really hard.  Some of this happens because honestly, life with four kids is a hilarious (and sometimes furious) roller coaster ride full of new people and experiences.  But... if I'm looking for a controlled moment to enjoy with my kids, then you'll find us sharing a book.

We've got issues of the book-related kind.  The shelves here are all full, the library basket is overflowing, and the weekly trip to the library is no longer optional.  It's mandatory.  The crazies in my house start going a little nuts if they don't have the new books in their series, and let's just be honest... I can only read certain books twice a day for a week.  Those books MUST go back to their home at our local library.  

Most recently, I've become an addict of the Read Aloud Revival podcast which comes out every other week.  It varies between author interviews and experienced mommas sharing the books they love to read with the people they love most.  It's a happy day when a new episode loads into my podcast app.  And if you never have time to listen (for me this happens when I face my daily climb up Mt. Laundry-Needs-Folding), the show notes are available for you to get some great booklists.  I'd highly recommend listening though.  

So we head to the library, armed with our lists, and load up our giant tote with books.  At this point, we know most of the librarians by first name (yes...even without reading their nametags), and nothing makes me happier than when they put a new book in my hands because they think we'll like it.  Ready for our favorites?  And to be honest, some of these we own because we read them so often.  I'll go youngest to oldest...

Emmie Jo (1 1/2 years old)
Hand, Hand, Fingers, Thumb by Al Perkins
If you haven't read this one, it'll be easy to check off your bucket list.  It's short, but the rhythmic language is JoJo's favorite part.  She wiggles to the beat of the words so you know she's enjoying it with her whole being.  

Pat the Bunny by Dorothy Kunhardt
Yep.  It's the same book that your mom read to you in the 80's.  It's still out there and still worth picking up for its interactive value.  "Pat and Judy can do lots of things.  You can do lots of things too." It's a good lesson for our littlest ones that we can do more than we realize.

Laura Lou (3 years old going on 14)
Ladybug Girl by David Soman
Any of the books in this series are amazing.  I'd personally start with Ladybug Girl and Bumblebee Boy, but I could be biased since that's the one we were introduced to first.  Ladybug Girl faces real life problems in each of her books and ends up figuring out creative solutions by the end of the stories.  I love the lessons these books teach without getting preachy or condescending.  The illustrations are beautiful, and honestly my boys were the ones to love these books first.

Franklin series by Paulette Bourgeois and Brenda Clark 
Old school, right?  We grew up on these, and Laura always grabs the limit that I will let her each time we go to the library. (For the record, that limit is 2.)  The characters feel safe, the illustrations are bright, and she gets closure every time.  Did I mention that she might be my daughter? "Franklin could count by two's and tie his shoes. He could zip zippers and button buttons, but..."

Ben (6 years old)
Mr. Putter and Tabby Pick the Pears by Cynthia Rylant
Ben's at that early reader stage when he needs to read and be read to a ton, but he doesn't want to read anything that feels babyish.  Enter Mr. Putter and his cat Tabby!  This is one of a huge series of books about an elderly man and his pet cat who just happen to live next door to a very extroverted older lady and her good dog Zeke.  Their adventures are so funny and unpredictable that even I get excited when I find out a new book has come out.  The title I listed above is one of my favorites, but you really cannot go wrong with any of the series.

Mercy Watson Saves the Day by Kate DiCamillo
Our librarian turned us on to these.  A middle-age couple has no children, only a pig... ahem... a porcine wonder named Mercy.  These books have repetitive language that isn't annoying, characters that are so quirky you're gonna make voices for each of them, and illustrations that look like they came right out of the 50's.  There are six books in the series, but read them in order!

Caleb (8 years old)
So here's where we get into troubled waters.  Caleb can read rings around me.  He reads faster than I ever have and loves genres that I don't particularly like, and (worst of all) avoids books that his mother recommends.  For the record, when he does read the books I give him, he loves them.  But he's 8.  Somebody hold me.  He still devours the stack of picture books I bring home, but to keep him busy, we've had to graduate to what we like to call "big kid books."

The Penderwicks by Jeanne Birdsall
The story of four sisters who live in the cottage of an estate for a summer.  They quickly become friends with the boy who lives in the main house, and their adventures had all my big kids giggling when we read aloud the first chapters.  After said time, Caleb stole the book and finished it on the sly in his room.  Stinker.  There are sequels to this book that we haven't gotten to.

Tuesdays at the Castle by Jean Craighead George
We cheated and listened to this on audiobook (which was top notch!), but when he couldn't wait for the next road trip to find out what happened next, I broke down and checked the hardback copy out from the library for him.  This is the first of a series of books about four siblings who live in and will one day inherit a living castle.  Yep.  The castle adds rooms as needed, prepares banquets when timely, and vanishes rooms that are no longer needed.  So basically this is my dream house.  But their adventures are fascinating and the story holds just enough suspense to be fun without being frightening to the little ears in my van.

It's odd and wonderful to be in pretty much every stage of reading development at once.  To tuck in the baby with her Spot the Dog cloth book and demand that the big kid turn off his Kindle because Narnia will be there in the morning.  To watch as one child grasps letters and sounds while another blends words into stories.  And when I'm tempted to lose my cool at the crazy, if I can turn off the burners and pick up the baby, if I can get to the book basket without tripping and grab an unread hardcover, I read aloud. And, if I'm lucky, the noise stops, the bodies slow, and once again we are travelers together in an unknown land with companions we are meeting for the very first time.  If I'm not lucky, well... nobody's lucky all the time.  In which case, there will always be tomorrow.  And if I'm really lucky, then maybe tomorrow's a library day.  Happy reading!


Wednesday, August 17, 2016

Landing

We're here... the bottom of the cliff that we jumped off of over eight months ago.  A choice we made as a family to give our second son an opportunity to try a new program of sensory, gross motor, and cognitive training.  I vividly remember talking with our family helper after coming back from Ben's evaluation meeting and saying the words, "It's gonna be a crazy six months."  Crazy didn't even scratch the surface.

The Brain Balance Program required us to completely alter our family culture in order to give Ben the best odds at successful outcomes.  As if I needed a reason to become more structured!  HA!  But there we were.  Hoarding TV time so we could do family movie night and not go over Ben's screentime limits (1 hour/weekday, 2 hours/weekend day).  Buying special foods to accommodate the egg-free, dairy-free, gluten-free, sugar-free, low-soy, low-corn diet (peanut-free too since we found out Ben was allergic two months into the program).  Not going out to eat for MONTHS because it just wasn't worth it when we realized how little if anything Ben could have at a restaurant.  Cooking.  every. night.  Because there were very few people in the world that felt able to cook for a child with such a restricted diet (and NO judgment here because I felt the same way before that child was mine).  Driving an hour away three days a week to sessions at the Center.  Doing exercises with a less-than-cooperative Ben twice a day for at least 30 minutes each time... more if he decided to celebrate Defiance Day (which just happens to be a pretty frequent holiday around here... bummer, right?).  There was truly no moment, no aspect of our lives that remained the same.  And to be honest, that wasn't all bad.

We became open with friends and family about times when we needed help with school pick-ups, childcare for our daughters, and a night out to just get away from the craziness we signed up for.  And we learned to lean on the family of God to pray for us, cry with us, and show up when we needed them the most.  Our girls formed sweet friendships with other children they would not have known as well if we hadn't truly needed a home for them while I drove Ben to the Center.  They even got to spend more time with their cousins and grandparents due to my inability to do all things for all my children all the time.  And there's the rub...

The vast number of hours the program absorbed meant that so many of the wonderful vital things in our family life that we would normally say "yes" to, had to be given "no's."  Our children had to be told, "I'm sorry, but I just can't right now."  Had to receive whatever was leftover.  And there wasn't much.  Quiet lunches where we would talk about the funny and the important (and the funny stuff that's important to a preschooler) were replaced by lunches eaten in the car while driving to a session.  Naptimes were replaced to sleeping on the go.  Playdates became rare and few since we had to get exercises in twice a day, and every other day we had to leave by 11 for Ben's session.  Ministries I love got the dregs of my energy, and David dropped a ministry commitment he was passionate about because he could see me falling apart.  Moments spent just snuggling a baby girl through her first year of life gave way to frenzied feedings in the Fort Wayne Public Library as we squeezed in a feeding in our only available time window for her to eat.  The sacrifices we made this year have been heavy and hard.

With that kind of commitment, we held on to the promise that the returns would be as great as  the investment.  Maybe even greater.  Promises of progress were made to us at the beginning of our time at the BBC, and reports of children making incredible strides were frequently voiced.  With that said, I want to say that Ben DID make progress.  He did grow stronger, learn new skills, and make strides in the right direction.  His attention span and memory are much longer and stronger.  His balance and coordination are more controlled.  He runs with a better stride and responds to authority with more maturity.

At least for our family, there seemed to be an invisible wall where progress stopped and our efforts felt unrewarded.  When the director of our Center pursued answers, she was told again and again by other directors that Ben's infant reflexes had not been satisfied and he just needed to do his exercises consistently and perhaps even 3 times a day.  Oh, dear friend, please imagine a mom who hasn't slept through the night in months being told to just squeeze in 30 more minutes of crazy each day.  It just wasn't possible.  We needed to be human again.  To relax.  To breathe.  So Ben finished the course before him.  He did his exercises at home as we had been doing them.  He finished the last of his sessions, and I am so proud of this boy who has become disciplined, goal-focused, and more flexible than ever.  Ben has tried new things and been successful.  He has accomplished all the goals we set for him to achieve before kindergarten.  I am so very grateful for that.  Was this program worth the investment of time, money, sweat, tears, and sanity?  I'm not sure I'll ever really know this side of eternity, but I do know that Ben needed and deserved our focused attention this year, and I'm so glad we poured into him.

Several of you have told me that you've seen ads for the BBC on TV or that you have a friend considering enrollment at a local Center.  Here's my take:

The changes to family culture and diet are GOOD, but please make them before you even try the Center.  Take a month to remove screens from your child's daily routine.  That means your phone, the television, the internet, Minecraft, FB, everything.  That 1 hour a day goes in a hurry as children watch screens at the doctor's office, friends' homes, and even checking the score of their favorite baseball teams.  After that piece is in place, use a month to eliminate gluten, dairy, sugar, and eggs from your diet and see how your child responds.  Then buy a copy of Disconnected Kids by Robert Melillo and do the infant reflex exercises with your child once or twice a day (take Sunday off because... it's Sunday) for a month.  Record any changes you see in your child (behavioral, physical, academic, social).  Now you're ready.  If the above changes have had positive results, give the 3x weekly sessions at the Center a try!

When our family did all of the above in a three week period with a 5 month old and a 2 year old at home, it was just too much.  Neither my husband nor I remember the diet, exercise, and lifestyle changes that the program requires being thoroughly explained to us before we made the leap.  Not wanting Ben to miss out on an ounce of success, we complied with the program but found ourselves with far more work than we could possibly complete while also raising and loving our other three children (and even really loving Ben beyond giving him the benefits of this program).  We've been parenting from a position of exhaustion and the hearts of our children have definitely been affected.  I have lost my temper more times in this last year than I can remember in. my. life.  It's been humbling to see my limits, and my opportunities to ask the forgiveness of my children have been daily.

Today is a pretty special day in our home.  It marks Ben's third day in kindergarten (not at home!), and he loves it.    While we still limit screen time for our whole family, the vice grip has loosened.  Yes, he's still dairy, egg, and peanut free; but gluten (Oh, glorious GLUTEN!!) has come back into our lives and we've noticed no detrimental effects in Ben.  The exercise notebook that we so faithfully used twice a day hasn't been touched all summer.  And our visits to Fort Wayne are no more.  I calculated 17 hours of hands-on work that the Brain Balance Program added to my weekly schedule so removing it has gifted me with AN ENTIRE DAY to invest in all four of my children with their unique passions and needs.  And sometimes, I even get to make myself a cuppa and just sit with a book for 30 minutes.  Be still, my heart.

I've typed this post in multiple sittings because (believe it or not) I still don't get enough time in one sitting to write uninterrupted and have my writing make sense.  Even as I re-read these paragraphs, the flow isn't what I want it to be, but I've needed to answer the questions and give you an update on our family.  If you have more specific questions, I'd be happy to answer them via email or I'd even share my French press of coffee with you if you'd like to talk face-to-face.

And in case I haven't thanked you for your prayers and support, THANK YOU!  From the bottom of my heart, thank you!  For the recipes, the meals, cards, and the prayers... I will never be able to tell you how needed your encouragement was to this momma who so frequently felt like I was in way over my head.  Thank you for loving us well, friends.  We know we haven't taken this leap alone.

Thursday, May 5, 2016

What to say...

Dear ones,

It's hard to know what to write at this moment.  Sometimes silence seems safer.  Sometimes silence happens because there is just no time to form the words.  In my case, it's a mixture of both.  It wasn't until I chatted with a friend a couple nights ago that I realized that I haven't even kept my prayer warriors up-to-date on the new challenges we've been experiencing.  Communication like this is a commitment I just have not been able to squeeze in, a fact that I regret and hope I can fix in the forty minutes I have right now.

For the past two months, we've been struggling as a family as we watch Ben regress physically and continue to struggle with many of the issues that led us to pursue the Brain Balance Center.  As chief cook of all his crazy food and head chauffeur of our trips to the Center in Fort Wayne, it's been hard to keep motivation for all the facets of this program as we have seen so little progress since our initial couple of months.  For those familiar with the program, let me just share that we have been very faithful to the food, environment, and exercise components that we are responsible for.  But at this time, we are struggling with the meager returns for what has been a monumental investment of time, money, and sanity for our family.

With this conflict in my heart, I met with the director of the Center two weeks ago for Ben's third quarter review.  She confirmed everything that we'd been feeling.  Ben hadn't had the results that they were accustomed to seeing at the BBC.  When she consulted with headquarters concerning Ben's case, they suggested that we probably had not been following the at-home components of the program.  When she assured them that this was NOT true, they were baffled as well and suggested a few adaptations.

First of these changes being an adjustment in the focus of Ben's sessions.  Normally each hour-long session is half sensory exercises and half cognitive skills.  Since Ben's cognitive skills are off-the-charts, his time at the BBC will be adjust to 45 minutes of sensory and 15 minutes of cognitive work.
Second, we will relax a bit at home.  Instead of calling Ben in from the great outdoors to do exercises twice a day, we're allowing him to be outside, play baseball, swing, run, and just be a kid in the afternoons.  We'll commit to doing exercises at least once a day on nice days (and might get to it twice on rainy days), but our entire family just needs to take a step back from 60 minutes of daily torture... I mean, exercises with Ben.  We can definitely stay positive through 30 minutes though.

Third (and HUGE for this momma), we'll be introducing gluten back into Ben's diet.  So far Ben has had gluten for over a week and has been doing fine with it.  We haven't seen a significant change in behavior, sleep, or attitude; however, I am a much more sane person since I'm not juggling one more ingredient to avoid.

Fourth, and this is where I started to cry in the meeting, Brain Balance is offering us another month of sessions (free of charge) to give Ben the opportunity to finish more of his goals.  While this may seem like a great thing (and it IS a kind offer), I wept from exhaustion at the thought of yet another month being taken over with trips back and forth to Fort Wayne.  At this point though, I'm already feeling better about moving forward with June since the cutback in exercises and diet restrictions has lifted HUGE burdens off of my shoulders.

We'll finish what they are offering us and will give it our best, but our best at this point is a reduced version of what we started with.  We are a far less energetic version of what we were at the beginning of this adventure, and for the emotional health of our family, we just can't keep up the same pace any more.  It's taken over 6 months for us to finish 62 sessions (with 10 more to go this month), and I just need to take a breath of fresh air, have FUN with my kids, and eat a cookie... a delicious, gluten-filled cookie.

I'm intentionally looking for ways to redeem our trips to Fort Wayne in June, including frequent trips to the zoo and parks in the morning before our sessions in the afternoon and picnics in the park rather than our worn-out tradition of stuffing food in our faces as we drive the hour to the Center.  Also, we're taking a two-week break at the beginning of June to allow the three oldest to enjoy swim lessons.

If you're one of the precious ones that has been burdened to pray for us, I thank you from the bottom of my heart and please keep praying for strength and grace to flow in our home.  If you're one of the dear ones who has learned to cook a GF, DF, EF meal for our family, you have blessed my socks off!  And if you're one of the many people who have handed me a Starbucks card with a smile and a hug, you have probably saved our lives as we drive home from Fort Wayne during what is normally naptime.  I swiped my very last Starbucks card yesterday.  Miraculously, when one runs out, another one appears from an unexpected source.  If that isn't a miracle of loaves and fishes proportions, I don't know what is!!!!

We are STILL praying that he will have a breakthrough in his last two months, but we know that regardless of outcomes, we have learned to walk with our Savior in a new and desperate way.  Thank you for showing His love and for holding us up in this journey.  You are loved and appreciated!  Gotta run...

Wednesday, February 17, 2016

Halfway there

Every session when we sign Ben in at Brain Balance, we see how many sessions we have brought him in for.  I was shocked today to see that we are really at the halfway marker.  WHAT!?!?!  No way have we been doing this for over three months.  No way have we been back and forth to Fort Wayne over 35 times in that time frame.  There is just. no. way.

It has been a very discouraging three weeks for our family.  For the first part, we had struggled with the Brain Balance Center about a month ago.  Ben's coaches were changing every session, which meant that every session he was getting out of doing a lot of work through his passive-aggressive, sneaky ways.  Fort Wayne is way too far away for us to drive so that Ben can goof off for an hour.  Ben wasn't really establishing a relationship with any one coach, and if you've ever been in early childhood education, you know that the relationship a child has with their teacher is critical.  I called the director and asked that this be remedied, but the solution has been more of a struggle to enact than we had anticipated. 

It's taken three weeks for Ben to now have a coach for all of his sessions that he really connects with.  She's not afraid of making him work, and she knows how to call his bluff.  Not only that, she volunteered to be Ben's coach.  Asked to take him for every session.  And is now committed to helping Ben get to where he needs to be.  This is a huge encouragement, and we are pushing forward with her, thrilled that she has taken a personal interest in our son and his goals.

In the meantime, the homefront has gotten increasingly stressful.  Ben has been doing great with his specialized diet, but he fights us every day on the exercises, trying to cut corners and do the least amount of work possible.  Yes, Mom, I do realize that this is my consequence for years of driving you crazy in homeschool.  David and I are trying to be creative in how we motivate Ben to do the work, but it drives me bananas that we have to have the same fights every. stinking. day even though he knows that he will have to do the work regardless.  We're tired of this.  He's tired of this.  We're all tired of this. 

Today Ben was crying huge crocodile tears as he mourned that Laura and Emily were going to my mom's for a playdate with their cousins and Ben never gets to go to playdates anymore.  And it's the truth.  Three days a week, that boy has to be in Fort Wayne.  One day a week we normally are going to doctor/dentist/specialist appointments for him or for one of the girls.  And the other day of the week often holds MOPS or errands.  I want to give him a playdate. I just don't know where to squeeze it in.  I know he's lonely (imagine that in our house!), but it's hard to know how to solve that problem when the schedule has NO breathing room.

We've also seen an increase in the number of fits that Ben is having.  Any time a decision doesn't go his way, he doesn't get what he wants, or one of the other children gets something he doesn't, Ben breaks down.  There's screaming, crying, flailing, and sometimes throwing.  A response I would expect from a 3 year old, but definitely not from a 5 year old.  Add to that the fact that he has moved backwards in some of his physical goals, and this momma's going a bit cuckoo.  We were told that there would be a second struggle period, and I think we've arrived.

While I want to be positive (we aren't where we started!), I want to be real for the sake of anyone out there who is considering this program.  It's not a cure-all.  It's a boatload of work.  And at the halfway marker, we still don't know what life is going to look like on the other end.  Also, there are issues in Ben's life... heart issues... that are becoming more apparent now that physical barriers have come down.   I know a huge part of our struggle is that Ben hasn't come to a place of surrender with Jesus Christ. 

All that said, thank you to those of you who still faithfully lift up our family through this season.  Because that's what it definitely is... a season.  A period where we are stretching our strength for the greater good and praying that we don't lose more than we gain.  If you're still on that prayer team, would you pray specifically for Ben on Monday, Wednesday, and Thursday?  That he would do his best to obey his coach so he can get the most out of his sessions.  And would you pray for David and me?  That we would surrender ourselves to Jesus so that Ben has the parents he needs to finish this journey well.  And would you pray that Ben would come to understand and accept Jesus Christ as his Savior?  I know every problem in our life isn't miraculously solved when we come to faith in Christ, but having spent so much time with Ben in the last four months, I see so clearly that he needs the Holy Spirit just as much as his rebellious, broken momma.


And thanks.  Thank for reading this.  For praying.  For supporting us with your encouragement and for wanting the best for Ben right along with us.  We are blessing beyond measure even when we feel buried under the weight of all that life is for us right now.