Charis Road

I have started a new blog!  You can find it here - Charis Road.

Janel

Charis

Have you found a purpose for your life that you're passionate about?  A desire that's so strong you feel it could burn a hole straight through your heart?

When I was younger, I just knew I was going to be a missionary doctor to Africa.  Over time, I was drawn to teaching, and through the years, that calling has come into even greater focus.

The fall after finishing college and marrying my Sweetheart, I began teaching first grade at a local Christian school.  I was there for six years before spending the next six years at home with my kids, and eventually returning to teach at the public school they both attend.

It was during my first few years of teaching that the initial glimpses of my ultimate calling began to unfold.  My heart was broken for students in the private school where I taught - those with needs that were not being addressed. I did all I could to help, often working with them after school to try to help them catch up.  But even when I was able to help them make it through first grade, they often left within a year or two in order to get the services they needed from another school.  It was heartbreaking!

And it was in those moments that God placed a vision on my heart.  For many years, I thought that I would one day start my own school - a private school with the resources to help students with a wide range of abilities - and not just those students who fit into "the mold."  Over time, this dream has developed into the idea of non-profit that would assist churches, schools, and other Christian organizations in better ministering to individuals with special needs and their families.  This would allow for a wider reach, more families being served.

As you can see, it was long before I had children of my own - children with a range of health and other needs - that this vision was born.  However, it is the needs of my own children that have made this calling personal.  When it was time for me to decide where they would attend school, my heart was torn.  The challenges they face were not severe enough that private school was totally out of the question.  However, I was faced with the option of enrolling them in a Christian school - where none of their other, "extra" needs would be met - or placing them in a public school - where there were speech, PT, nursing, and other resources available as we needed them.  It was such a difficult choice!  I had grown up in a Christian school and gone back to teach there for 6 years.  The majority of my life was invested in this place.  However, I knew they were not ready to meet the needs of my own children.  And, no, the problem is not an isolated one.

Yes, they all have a long list of reasons - some financial, some not.  However, when I look through the Scriptures, "It's just too hard or too expensive," was never an acceptable reason for not doing the right thing.  Public schools have, for some time now, realized their obligation to help students with special needs.  Should this not be even more true for our Christian schools, churches, and other ministries?  When Christ walked this earth, He did not limit his service to those who conformed to a certain image.  In fact, He spent the majority of His time ministering to those rejected by society:  fishermen, tax collectors, the hurting, the sick.

The ultimate problem is that when we exclude (or fail to reach out to) individuals with special needs and their families, we not only lose that individual, we lose the entire family - mom, dad, other siblings.  There is an entire group of people that we are not reaching with the gospel.  There's not enough time here to discuss the wide range of needs that exist.  I will add, though, that with the growing emphasis on foster care and adoption, Christian families are taking in more and more children with a wide range of needs that Christian ministries have hardly begun to address.

At this point, I have no idea when all of this will come together.  All I know is that I've been called to work toward this end and have recently felt the urgency to share my story with a wider range of people.  So, this is what I ask of you, my friends, right now...

1.  Please be in prayer with me about this.
2.  Share my story with anyone you know may be interested.  I would love to start hearing stories from others who could benefit from this type of ministry as well as others with a similar passion for reaching these families.

For those who made it this far, I am blessed to have you in my life.  Thank you for reading.  Charis (from the title) is the Greek work for grace.  It has been on my heart for some time now and will be included in the name of the non-profit once it's established.

Janel

Living Life By Degrees

As we approach the New Year, many will reflect on the past while planning for what they hope to be an even better future.  They contemplate the highs, the lows, the moments that will never be forgotten.

For those whose lives are touched by chronic medical challenges, reflection can be bitter sweet.  Woven amongst all of the good memories are reminders of illness and other health challenges.  Numerous doctor visits, therapies, medicine trials, hospital stays, possible brushes with death.

I've seen many analogies for those living life with medical and other challenges.  There's always Holland, and many have used the Spoon Theory to explain their lives to others.  For me, I think of our lives as living by degrees.  It's rare that we find something that drastically changes the course of our lives for the better.  However, over the years, we've found various treatments, interventions, medication, supplements, and the like that have added greater quality to our lives - sometimes by the smallest of degrees.

A supplement that made her fall less than before.  Another that steadies her gait.  An intervention that lessens the sensory overload.  A tube that allows him to grow.  An oil that keeps his stomach settled.  A block the eases back pain.  A conversation with a old friend who helps me keep my sanity through it all.  New friends made in the midst of the pain.  An understanding smile.

On the other hand, we've lost ground in some areas as well.  Another favorite food lost.  The return of a symptom we thought we were leaving behind.  A needed medication with side effects too difficult to handle.  A doctor who doesn't understand.  Another who admits for the first time that we may never outgrow this.  A stabbing comment, a judgmental glance, friends lost.

So, as I reflect on the past year, we've gained a few degrees in some areas while losing degrees in others.  Some days it's easier to handle than others - and some degrees are more difficult to lose than others.  However, as I look back this past year, I choose to be grateful for smallest of victories, each small degree gained.  Because there have been years with little to no victories.  And because I've learned to take nothing in this life for granted.

And in the midst of it all, I'm most thankful for a God who never changes - even by the smallest of degrees.  One who is sufficient.  One who if full of strength when mine is gone.  One Whose mercies are new every morning (not just every New Year).  One who never fails.  He is my portion.  He is enough.

And even if today is the best my life ever gets, my soul is at peace.  He has already met my greatest need in Christ.  My eternity is secure.  Everything else pales in comparison.

"Jesus Christ is the same yesterday and today and forever."  Hebrews 13:8

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.  “The Lord is my portion,” says my soul, “therefore I will hope in him.”  Lamentations 3:22-24

On the Edge of Normal

Did you ever watch the movie, A Walk to Remember?  The main character had a list of things she wanted to do during her lifetime.  One of the items on her list was to be in two places at once.  A friend helped her to mark this item from the list by taking her to the state line – to stand with each foot in a different state.

I think that’s a pretty good analogy for my life right now – living in two places at once.  On one hand, our life can seem pretty “normal” to most folks.  Just glancing at the surface, you may not notice anything out of the ordinary.  The standard family of four – mom, dad, two kids.  Sometimes, I can almost forget it myself.  We’ve found our new normal, developed our routines, adjusted our lives to meet the cards we’ve been dealt.

 

 

However, it doesn’t take much for us to be suddenly be jerked back to reality.  Every holiday or special occasion really – because they always revolve around food.  The look on his face when nearly every gift he received at a party was something he couldn’t eat.  Any overnight event – because most kids don’t have to take along an assortment of medications, bags of their own food, and various other items needed to survive time away from home.  And if we’re all gone more than one night, you better not forget to check “the list” or you’re sure to forget something extremely important that can’t be picked up last minute at your local supermarket.  (I can’t even imagine what will happen if I ever have to get it all onto an airplane!)  Then, there are the common, everyday illnesses that always have the possibility of putting one of them in the hospital.  Will there come a time when her body decides not to bounce back?

And there are other affairs – concerts, recitals, awards ceremonies, field days, and the list goes on.  Will this be the moment that the other kids notice?  Will this be the time someone says something unkind and breaks their fragile little hearts forever?

A few weeks ago in Sunday School, our lesson started out with this question:  When have you felt like you belonged?  While I never shared my answers aloud, there were several moments that came to mind.  At the top of the list are Magic Moments Family Camp and Give Kids the World.  That’s because while we generally manage to travel undetected in the population often referred to as “general” or “normal,” the kids’ long-term health issues also identify us with the world labeled as “special needs.”  And honestly, this is where I generally feel most at ease, most at home.

It’s when we’re with this group that we don’t have to explain the tubes, the gait disturbances, the special foods, the medications, and need to stop a while to give your body time to recover.  Staring eyes are filled with understanding and love.  If your child becomes irritable or difficult to manage, they don’t automatically assume he or she is a behavior problem and just throwing a fit.  Because they know - they really know.  Because they’ve been there too.  And while our lives and situations are all very different, there is a common pain, a common loss, and common understanding that the other side of our life - the “normal” side - may never get.

All of this reminds me of another struggle, a spiritual one.  While my body is here on earth, my spirit longs for the day when I will take residence in my eternal home.  Until then, I have one foot here on earth and another standing on His promises (2 Corinthians 5).  Because only then will my soul be at rest.  Only then will I feel completely accepted, completely at peace.  No more struggles, no more tears, no more pain, no more “normal,” no more “special.”  Just an eternity with my Savior.

 “For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”  I Corinthians 13:12.

What Mother's Day Means to Me

I shared this on Facebook in May.  I wanted to make sure I went back and added it here too.

 

Mother’s Day.  Yes, it’s all the “normal” things like little handprint poems and flowerpots.  Homemade cards.  Feet pattering down the hall.  Family movie nights snuggled together on the couch.  Mud puddles.  Jumping in leaves gathered in piles.  Hand-picked bouquets from the yard.  “I love you, Mommy!”

It’s also years of being foster parents to children who touched our lives for only short moments.  Where are they now?  What has become of their lives?  I may never know.  The twins who attended Christmas parties with us that year.  The adorable African-American baby.  All those wondering faces – my blonde hair, his dark skin – could he really be hers?

It’s miscarriage, broken hearts, a child we were never able to meet.  A little shoe that still hangs in my room, engraved with the name “Micah.”

It’s the one little foster child that changed our lives forever.  Therapies, walkers, home visits.  Learning to love.  How could one little heart already be so wounded by life?  The snuggles that took years to earn.  The one birthed in a judge’s courtroom.

It’s the one I nurtured from the womb – yet was still unable to shield from life’s harshness.  The years spent in agonizing pain, hospital stays, numerous tests, doctor visits.  The moments I pray I never have to revisit.  The tube in his stomach that provides relief.  It’s “Mommy, when I get to heaven, I’m going to eat pizza!”  It’s seeing him wish he were rid of this contraption, this hole in his body – yet bearing it all with a strength well beyond his years.

It’s 9 years of children that I cared for just for a school year.  The ones with loving mothers of their own – and the ones looking to fill that deep place in their hearts.  It’s seeing them with tears in their eyes as we do Mother’s Day activities.  Will they even get to see her this year?

It’s one more year to celebrate with my own mother.  Thankful for the two Mother’s Days we spent together on borrowed time.  They didn’t think she’d make it for these.  It’s unlikely she’ll be here for the next.

And for many today, it’s the longings of motherhood yet unmet.  It’s waiting on the call from a system or agency.  It’s an unexpected bundle on the way.  It’s sitting at the hospital with those you love, praying for more time.  It’s longing for loved ones that left this earth too soon.

It’s the days when I handle all of these things with gentleness and grace.  When wisdom abounds.  When love flows unconditional.  And it’s also the days when my words are not so kind.  When I want to hide in the closet with a bag of chocolate.  When it’s all I can do to put one foot in front of the other.

It’s knowing that God has and will continue to sustain me through it all.  There is nowhere I can flee from His presence.  To Him, there are no surprises.  I am a child of the King.  One day, my faith will be made sight. 

Whatever Mother’s Day means to you this year, I pray you will feel surrounded by His everlasting love, upheld by His never ending grace, and filled with His mercies that are new every morning.

“Can a woman forget her nursing child, that she should have no compassion on the son of her womb?  Even these may forget, yet I will not forget you.  Behold, I have engraved you on the palms of my hands.”  Isaiah 49:15-16

Snow Days ~ Jan. 2014

Winter Gridlock 2014... Snowmageddon... Whatever you decide to call it, it's been an interesting week for many people around here.  I'll start out with the fun stuff.

On Wednesday, the kids and I enjoyed playing in the snow together.  (Criss was still at Home Depot, but I'll get to that later.)

 

 

They thought it was great fun jumping on the snow-covered trampoline - and throwing snow at each other.

We tried making a snowman, but the snow was too powdery.  We made snowballs the best we could, and enjoyed a family snowball fight.

 

 

Back to Tuesday, the day it all started...  The meteorologists had forecast a light dusting for our area - with no travel problems expected.  When Criss texted a little after 9 and said that they were going to send them home early, I checked the weather blog and saw that they had moved the line on the map.  They were now saying we could get about an inch of snow.  And once it started snowing, you could tell we were in a heap of trouble.

By 11:00, Criss was headed home.  Little did he know he would be in his work truck for another 16 hours, and not make it home until the afternoon of the following day.  He got stuck in a "parking lot" of cars on 65N between Valleydale and 459.  The roads everywhere had iced over less than an hour after the snow started falling.  Early the next morning (at 3 AM), he made it to Home Depot where the employees let him crash for the night (and part of the next day).

Meanwhile, the kids and I were still at school.  By the time we dismissed at 12:30, the roads were too icy for the buses to leave, and we still had about 300 kids.  Thankfully, the other half had already been picked up earlier by their parents.

Fast forward to later that afternoon.  It was obvious that it was too late for me to drive home (in the dark) on our windy back roads and hills in a minivan with two children.  Besides that, 216 (the main road between the school and our house) was closing.

The problem was that I did not have everything I would need for the kids to stay for an extended period of time at the school.  I had several problems...  no purified water for Silas (to drink and for his feeding tube formula), not enough of their "allergy-free" foods, feeding tube issues, none of Silas' medicines, and the mental list went on and on - like one giant, unsolvable logic problem.

Thankfully, the police officer that was at our school went to work to try and find us a way home - we were considered a medical priority.  One of the dads from the school, who (I believe) is also an EMT, helped get us home.  He and a relative drove us most of the way and then walked with us the rest.  For their help, we are forever grateful!

On Thursday, the snow was wet enough to build a snowman, and Criss and the kids enjoyed building a snowman and sledding down the hill in our back yard.

 

While Tuesday's weather event caught most of us unprepared, it reminds me of another event that will come unexpectedly.

 

"For you yourselves are fully aware that the day of the Lord will come like a thief in the night."  I Thessalonians 5:2

 

"But concerning that day and hour no one knows, not even the angels of heaven, nor the Son, but the Father only."  Matthew 24:36

 

It's one thing to be caught unprepared in the snow & ice - and another to be caught unprepared for the Lord's return.  Are you ready?

 

Janel

Autumn ~ Spring 2013

Here are some of the things that have been going on with Autumn lately...

She's in second grade this year and is reading well.  She loves school, and I enjoy seeing her gradually becoming more social each year.  Organization is not her strongsuit.  She often reminds me of Pigpen (from the Peanuts cartoon)  - with a cloud of dust around her everywhere she goes.  But, she's creative, and I enjoy reading the stories and songs she sometimes writes.  She also loves music, and the ipod she got for Christmas might as well be her third arm.

Last August, we had a follow-up with her doctor in Atlanta that has been trying to decide if the problems with Autumn's mitochondria are primary or secondary.  Some new tests were due to come out within a few weeks of our visit.  The testing is finally complete, and we're scheduled to return to June to hear the results and see if they were able to find any new information.

The day after we returned from our trip to Atlanta, Autumn had surgery to have her ear tubes removed.  They were taking a long time to heal, but they were finally closed back up at our last visit, and we were able to avoid another surgery.  Yeah!!!

Much of this school year has been focused on trying to find her an ADHD medication that worked without causing any unbearable side effects.  FIVE medications later - we still haven't found anything.  Here a few of the issues we're having.  First, when she first moved in with us, she had some pretty severe anxiety issues.  So far, any of the stimulants we've tried have brought back her anxiety (along with many other problems) and there was no way we could continue those.  Second, Autumn cannot swallow pills.  Anything we try must come in a small tablet (that I can put inside a raisin) or we can't get it in her.  Third, some of the non-stimulants completely knocked her out.  She was barely awake all the time.  Fourth, one of the medications made her heart rate/blood pressure drop, and we had to discontinue.  Finally, all of the ADHD medications interfere with her eating and weight gain.  At the advice of the GI doctor, we have had to quit trying new meds in order to try to get her weight back up.

Her weight issues are pretty bad right now - bad enough that the GI doctor has mentioned a feeding tube a couple times - to get extra calories in her overnight.  I just can't end up with two kids on a feeding tube!  How crazy is that - when they are not even biologically related?  I knew Silas needed one, but I'm not convinced it's the best thing for Autumn.  For now, we will try to increase the amount of fat and calories in her diet.  We'll see the GI again this summer to see if it's helped.

Without the ADHD medications, she barely hangs onto the growth chart.  With the meds, she falls completely off the chart.  And so, our medication trials are on hold for now.  She's very fidgety and has to be told at least 10-15 times to find her shoes and brush her teeth every morning, but she's managing to make it through second grade.  Overall, it could be worse.

After stopping the meds, we had problems getting rid of the all of the irritability.  I'm in the process of going through anything new we've started this year to find the culprit.  Hopefully, I will have that figured out soon.

Her walking has not been as good lately either.  I'm hoping that whatever is causing her irritability is also affecting her walking.  They have said that her muscle problems could become degenerative, and I'm hoping that's not what's happening.  I've come across several things lately that talk about how some kids allergic-like reactions can result in inflammation in the brain.  Very interesting stuff.

I'll update on Silas next time...

Janel

Where We've Been

So much to say, so little time to write these days...

Life just gets busier and busier.  I think all the time about writing, but other things get in the way.  

I've been teaching college classes on and off for nearly seven years now.  I was teaching one course (as well as a couple independent studies) in the fall, and they had hoped to have me teach several more this spring.  However, there weren't enough students that needed the classes this time around, and that left me desperately needing another source of income.

We've been mostly living on one income since I was pregnant with Silas - along with the occasional money from the college classes.  We were making it somehow, even with the large number of medical expenses we have.  However, with the addition of the feeding tube last summer, I had to find a more steady income source.

But, God provided.  A job opened up at the kids' school - and it was the one position that I absolutely LOVE - intervention.  I spend half the day as a Tier III teacher, giving extra help to students who are struggling.  I am working with kids in 1st - 5th grades.  I enjoy the pace and variety.  The second half of the day, I work just with second graders.  Their classes are very full, but it was too late in the year to split the classes.  So, I pull out small groups during the afternoons.  Autumn loves the fact that my classroom is on her hallway, so she sees me several times during the day.  Silas gives me big hugs when I see him in the lunchroom, and grins when we run into each other in the hallway.

Beyond the additional income, it has provided us with supplemental insurance that has been covering all of our deductables, copays, coinsurance, prescription copays, etc.  For most people this isn't much.  For us, it's saving us hundreds and hundreds of dollars every month.  Yeah!!!

And thus...the reason there's so little time to write.  But, I will try to do better.

Another reason is related to our camera.  The camera we'd been using was on it's last leg, so we bought a new one with some of our Christmas money.  Our computer is also on it's last leg, an we're afraid that downloading a new program for the camera as well as all the new pictures will be more than our poor computer can handle.  Hopefully we'll have a new one soon.  Since I've been working full time, we're going down the list of everything that's been broken and slowly fixing or replacing everything.  Other things (like the oven) were just higher on the list.

Until then, I'll will try to send a few more (pictureless) updates.

Happy Belated Easter!  He is Risen...He is Risen Indeed!

Janel

The Leaf Pile

The kids love it every year when Criss rakes up a few leaves and makes a huge leaf pile for them to play in.

I'm going to try to post short video clips of the experience below...  (They're just a few second each - taken from our camera.)

As you can see, they had a blast!

Janel

This is the first time I've tried to add video, so hopefully it works.  For those receiving this by email, you may have to go directly to the blog if it doesn't work in the email.

Tubie Tidbits

For those of you who are interested in a little more information about feeding tubes, I thought I would share a few things that I've found to be very helpful.

Once Silas' feeding tube surgery was scheduled, we stumbled across Tubie Friends.  They sew feeding tube buttons into Build-A-Bear stuffed animals and make them available for kids with feeding tubes.

We contacted them before Silas' surgery, and they rushed our order so he could get it as soon as possible.  It arrived the day of his surgery.

It was nice for him to have a stuffed animal with a "button" like his that he could play with and get used to.  (He liked learning how the different tubes and extensions hook and unhook.)  We named ours Fudge.  We took Fudge to school, and the school counselor used him to tell the other kids in Silas' class about his feeding tube.

You'll notice that Fudge has a piece of cloth around his button.  We eventually bought Silas something like this from Button Buddies.  Feeding tubes can "leak" throughout the day.  Some people prefer to leave it open to the air.  We tried this, but the leakage was irritating Silas' skin. It was also making his granulation tissue worse.  (Granulation tissue is a red, fleshy tissue that often develops around feeding tube incisions.)  At first, we tried using gauze, but the strings would often stick to him and become very difficult (and painful) to get off.  The Button Buddies have been wonderful!

Another great resource that I found was the Feeding Tube Awareness Foundation.  (That's their logo at the beginning of the post.)  Here are a few of their pages that you might find helpful:

About Feeding Tubes 

Different Types of Feeding Tubes - Silas had a NG tube over the summer and then transitioned to a G-tube button.

For Friends and Family

Products - I just love their logo.  I'm planning to buy something from their store soon.

Note:  You can click on any of the highlighted words above to follow the links.

Janel