Such a Time As This

Faith, Hope, & Love

From Where Does My Help Come?

Part 1

Early last Spring was a bleak time.  The day of our long awaited Neurologist visit came and I wasn’t too excited. Honestly, not knowing what to expect, I kind of imagined it would be more of the same old stuff. You know? 

Have you traveled this road, too?  

We’ve been shuffled to more doctors than I can remember and most of them had no idea how to help my son.  At the beginning his pediatrician told me he would outgrow everything. One teacher told me he would be caught up to his peers by high school.

He struggled with muscle tone – lightly floppy up top and slight tight in his legs. He struggled holding a spoon. He struggled forming words. He walked on his tip toes. He flapped his hands. He was non – verbal. Then he was verbal. As the years went on his abilities fell further and further behind his peers. He would gain some ground and lose some in another place.

He was given labels early on like global delays, cerebral palsy, autism, developmental delay, PDD-NOS, apraxia, dysarthria, intellectual delay and on and on it went. 

That was until last April. 

I walked into the neurologist’s office that morning one person, and left transformed.  Our son was diagnosed with potential severe neuropathy. Unrelated to his prior genetic diagnosis, or his cerebral palsy (which was at that time withdrawn from his diagnosis list). He couldn’t feel his toes, part of his legs, and possibly his fingers.

As the news sank in, I became cold as ice.  I felt dark clouds gather and I just didn’t know what was going to come next.  Sitting in my chair, across from my smiling, happy go lucky, sixteen year old boy, I couldn’t understand this news. I didn’t comprehend how he just couldn’t feel his toes and nobody knew. 

No doctor had talked to me about this. No therapist figured it out.  Memories plagued me. I had asked his geneticist why his toes were cold all the time. I mentioned it to his physical therapist. His coloring was off. No answers. No ideas. Everything was “normal” for the boy with the non-diagnosis. My heart sunk as a mother. How did we miss this?

I’m certain that the Lord blessed that meeting on that cold day in April with our new neurologist who immediately sensed what we all had missed.  

The first thing that popped into my mind was treatments.  Maybe this was good news, right?  We can help him now that we know what we are fighting.  

She shook her head.  I don’t believe this is treatable, in fact I think this is genetic.  Again, I couldn’t believe it.  Could we have missed this on Whole Exome testing?  How? Why? The doctor thought we might be dealing with one of the many in the Charcot – Marie- Toothe family of disorders.

As we left that day we were left with the news that he would need an MRI of his brain and spine and also a nerve conduction test along with an EMG.  

It was a hopeless situation but I secretly held on to hope.  I guess I’m just a rebel like that.  I know that the doctors know what they know — but I’m a child of the King.  He does the impossible — the extraordinary every single day.  

Continued in Part 2 here

Block Scheduling — Homeschooling High School

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We are on year number 10 of this homeschooling thing and I know I still have a lot to learn. Last year was a rough year and I decided to try out something different this go around. In fact, it came to me in the middle of the night (no, I’m not kidding). I started dreaming about schedules — more specifically block scheduling.

I woke up that morning in early July, saying, can you do a class in less than a year? How about in 18 weeks? What about 9 weeks? And so began my quest to see if this was even possible.

Back when I was in high school in the public school system, I had the advantage of moving a lot. (Actually, typically that isn’t an advantage.) The one thing that I learned is that there are lots of different ways to do school. The one system that I loved the most was my senior year because that little school up in New England used a block schedule. In fact, I’m pretty sure, if I remember right, that I only did 4 classes a semester – but each block was about 1.5 hours long plus lunch. Spending more time on less classes helped my brain wrap around actually learning the material and learning it well. And then in college, almost all of my classes were semester long. The only ones that weren’t were my Summer classes which I could do in a shorter amount of time.

This year we are doing our first year of high school homeschooling. I know my 9th grade son is a lot like me — and can focus for longer periods of time but doesn’t do well with so many random things to remember to do.

Here is what I organized his school work for semester 1.

Semester 1

  • Language Arts (Vocabulary & A Gentle Feast LA for copywork and dictation, Grammar) & Writing – WriteShop for Writing (1 Essay a week)
  • Math – Algebra 1 Saxon (Year Long)
  • History – Master Books “For You They Signed” American History
  • Science – Intro to AP I & II (Master Books) (Each done in 9 weeks)
  • Science – Intro to Geology (Master Books) (1 Semester, Video Based)

We are using block scheduling to get the content subjects of history and science done in 1 semester and each worth a credit each. The great thing about doing this with Master Books is that they give a schedule in the beginning of each teacher manual. The schedule can be altered but it is a helpful jumping off point.

I created a syllabus for each class by marking “week 1, week 2, etc.” on the page. I then proceeded to mark down day 1-5 (we have a 5 day a week schedule) under each week. By viewing their suggested schedule I could quickly tally how much reading and how many worksheets would need to be done in each week. It usually ended up being 2-3 days worth each day. Because a lot of Master Books materials assign a worksheet on a day when there isn’t any reading (in order to not overwhelm the student) it was quite simple to implement this schedule. For each subject it ended up totaling about 4-10 pages of reading per subject and 1-2 worksheet a day.

homeschooling high school

Semester 2

  • Language Arts (Copywork and Dictation)
  • Math Algebra 1 Saxon
  • American History / Civics
  • Intro to Logic
  • ___________________________________
  • (Optional depending on time – Either WriteShop 2 or Philosophy: Worldviews in Conflict — if we can’t fit these in, we will do them in 10th grade).

I absolutely love using the syllabus I created for each of his classes — it keeps us both on track. I can check off what I teach or read that day — and his written work. There are no dates on the syllabus but there are week number and days. That helps us see how much more we have to go and where we are heading next. If we need to skip a day, however, due to sickness or holidays, it doesn’t mess up our flow.

Let me know if you’ve tried block scheduling and how it works for you!

A Journey West

This Summer my family took a journey out west.  We drove for four days with all 7 kids bundled into our 12 passenger van before we hit our first big goal: Yellowstone. 

An interesting thing happened as we made our way further and further down the road.  The landscape which started off looking much the same as Illinois morphed ever so slowly.  Before we knew it, we looked out the window to see hills and then mountains towering in the distance.  And shadows seemed to be painted in strange locations.  

After four days of driving we reached Yellowstone National Park– full of mud pots, furmeroles, and shooting geysers.  My husband, being the planning man that he is, downloaded an app with a tour guide that using a gps system, tracked where our exact location was in order to tell us which stops were worth our time and what to skip. We loved hearing about the most picturesque places and where to hop out for a special memory making treat.  

At one point, our tour guide told a story of one of the first Europeans that stumbled upon Yellowstone.  That man made a funny quip about being unsure if he had actually discovered the fire & brimstone hell of the Bible.  It dawned on me — what to us is beautiful, serene, and a glorious mystery — some of the first settlers believed was a real here on earth hell. 

It’s one thing to stay on our rope encased hard wood planked paths — safe from the hot and present danger that comes with the volcanic terrain, it’s another thing all together to hike it without signs, tour guides, or apps to tell you how to stay safe.  Imagine falling into a boiling mud pot — or Old Faithful.

There’s a fine line from observing the beauty of the colors, heat, steam, vapor, sounds of rapidly boiling earth from our little view in our safety spot.  It’s another to walk it without knowing what lay ahead.  You might just be boiled a live.

You see, what occurred to me is that knowledge, wisdom, and a healthy dose of perspective is an important thing on a trip to a place like Yellowstone.  These are also important tools for the many journeys you will find yourself exploring in life.

This past year, our trip West isn’t the only journey our family has found ourselves on.  We’ve been navigating a rough, somewhat rocky, a bit dangerous, and a very mysterious terrain. 

Not sure when we veered onto this course.  Not sure how long we’ve been traveling this go around.  Suddenly, this past Fall, when faced head on that our oldest son couldn’t walk the halls of his school anymore without help, we decided to find a doctor who might have insight.  

We waited months for the appointment date and soon heard words we never knew of. Neuropathy.

That’s not the road we thought we were on.  We had grown used to terms like cerebral palsy but we didn’t know what this new diagnosis could mean. 

This news meant a lot of tests including MRIs and nerve conduction tests.  That is a story for another day, but long story short that EMG and Nerve test showed a small picture but a picture nonetheless. 

This picture showed a boy whose body had slowly eaten away at the myelin that covers his nerves.  Of course the longest nerve in the body, the one that stretches from the spinal column down into the big toe, was affected the worst.  This test revealed the reason for falls, unsteady gait, and slow rate of movement — feeling had fled his feet completely.  The hands — fingers had already begun to deteriorate, as well.  

After several more diagnostic tests Adam received his first dose of IVIG at our local hospital.  We were told there is a chance that the IVIG can give his body a chance to heal by remaking its own myelin. 

The day that is etched into my memory is when I gazed across the room seeing my son’s doctor poke and prod his foot.  No response.  It felt like a decade worth of thoughts and fears collapsed onto me at that moment.  When did we get here?  I wondered. And how do we get out? 

From last Fall to the Spring our son went from needing some assistance walking mostly long distances to not only needing a walker but to needing a wheelchair for long distances.

Our medical team believes what we are dealing with is an autoimmune disorder called CIDP.  To put it into perspective — the beginning of 9th grade our son could walk by himself unassisted to the end of 10th grade he needed full assistance.  

Last Fall we had no idea what kind of crazy ride we were already buckled in for.  We thought his CP had progressed but now realize it isn’t even muscular — it’s in the nerves themselves.  

Right as we thought we were navigating the path we were put on, we found ourselves somewhere we didn’t fully understand.

This journey is heartbreaking because we feel so helpless.  We want to turn this ride around and so we are hoping that this what will happen by following the treatment plan.  While driving this road, though, we’ve seen love, joy, faith, and courage in the most unexpected of places.  We’ve seen God meet us in the pit of despair. 

We’ve witnessed the words of a true child-like faith.  We see how God uses weakness to reveal His strength. We’ve tasted joy after some drenching storms that seemed unending.  The sweetest rainbows followed that filled our hearts to overflow in gratitude. We’ve felt hope with intensity of birthing pains as God does a work in and through this.

For those of you who have been walking this road with us, thank you. Your support, your prayers, your love means everything to us.

We ask also that, if you feel led, to please pray for our son, Adam, and for our family.  

No Longer Voiceless

My view of “Unplanned”

I was born into a world where abortion was legal.  I was born into a world where abortion was accepted.  I was born into a world where abortion was a fact.

There are some things in life that you have to come face to face with to truly understand.  Most things we know because we know them in our head. Only a small percentage of things do we fully comprehend with our heart.  On Saturday afternoon I learned something in my heart — and I can never forget.

This past week, I had the chance to view the brand new movie about the life of Abby Johnson.  I entered the dark theater not knowing what to expect.  I had heard only a little of the movie, “Unplanned.” I knew it had perhaps unfairly been given an R rating and I knew it was a pro-life movie.  

As I sat through the first few minutes I couldn’t shake the feeling that I was being strapped into a roller coaster ride, one that was on the brink – about to take off up and down some treacherous hills. What did I just sign myself up for? I wondered as my belly got that sinking feeling and I looked away from the screen – – eyes clenched.

I won’t lie. There were a few scenes that were so difficult to watch and some that brought memories like waves washing over me.  It would only be fair of me to tell you that those scenes were absolutely necessary to tell the whole truth of what abortion is and what it is not.

The movie stirred up emotion in me that I had forgotten even existed – maybe it didn’t exist before now.  I can’t be too sure.  

I was a naive kid growing up in a preacher’s home.  I knew what abortion was… or at least I thought I did.   I was a young teen about 20 years after Roe v. Wade. I knew that women held that right to choose but I also knew it was the ending of a pregnancy — of a baby.  I didn’t think or know much more about it.  As I grew older I understood more of the political perspective of abortion and yet I still had no idea of what really went on in a clinic.

I was in 8th grade when one of my friends didn’t make it to the first few periods of the day.  We ate lunch together everyday, so, I looked for her and wondered where she was.

Soon, I noticed she was walking into the cafeteria, sitting down at our normal table.  She was quiet.  A few minutes later we made our way to the playground out back where kids hung out until the next bell rang. 

I can’t remember if it was Fall or Spring. I just remember standing outside with kids talking and playing games around us.  She looked at me and told me point blank that she had just come from an abortion clinic.  I looked at her – not sure how to respond or what to say. 

I was a quiet kid — known for being shy and for being a preacher’s daughter. I followed the rules and kept my head low — hoping not to be noticed, really. I almost proudly didn’t react to much –I lived day to day just kind of accepting whatever came my way.  But my friend … she looked different.  Her eyes looked blank as she said, “I can’t believe my baby’s gone.”

I won’t pretend to  know what she experienced. I wish I had been able to ask.  I don’t know what she saw that day. I’m not sure if she was awake or asleep — if they showed her her child’s heart beating or even how far along she was.  All I know is that she knew she was having a baby and now that baby was gone. 

She was 13 years old and I’m certain the man who did this to her and forced the abortion on her, probably the same man who dropped her back off at school that day, should have been in jail.

I don’t know what I said to her that day.  I wanted to be there for her.  I knew she didn’t want any of this.  I knew she was in a very unfortunate circumstance, I now realize she was probably being taken advantage of by a man more than twice her age. When I was 13, I didn’t realize how awful that was, or that she probably needed help. I was scared she would think I was judging her.  I was afraid to even invite her to church for fear that she would think I was better than her.   

Her spirit seemed to be crushed as she stood there with tears dripping down her cheeks.  She didn’t want to talk much after that day.  She was silent. So was I. 

That wouldn’t be the only time I was silent during my school years.  When I was a junior, I was at a youth event where a new girl had just walked forward to repent and to become a follower of Christ. 

At one point she had wondered off, alone, possibly praying in the sanctuary.  When some of us teen girls found her, in the very last pew of the darkened room…she shared that she was newly pregnant and very scared.  She was probably in 9th or 10th grade.  I didn’t know her well, but I’m sure we went to school together.  I just wanted to hug her or hold her hand and listen to her… to tell her we were all here for her.  There were people who could help her, who would love her, her family, and her baby.  However, I only listened as a girl in charge, one of the youth leaders, suggested she get an abortion — the easy choice, because God would ultimately forgive her.

I seem to wear silence well.  In a world filled with loud voices, I’m voiceless. And weary.  I’m weary. I’m tired.

This world has been turned upside down — inside out.  We are called to love the Lord God with ALL our heart and love our neighbor as ourselves.  As I watched Unplanned I was heavily convicted.  I was convicted of my own dirty filthy heart. I was convicted that we must turn from this madness.  There must be a cleaning – a renewal of our hearts.  

 How many times have I sought the easy thing over the hard thing?  How many times have I kept quiet about my own convictions? How many times have I not stood up for adoption, for orphans, and for helping single moms who need help?  How many times have we been voiceless?  How long will we wait to share the love of Christ with these women who need hope? Why is it easier to keep to ourselves instead of walking the hard path — the path of servanthood?

I stepped out of that theater, my heart broken, crumbling.  Seeing my own shame in the face of this epidemic of death, I wish I had done more. I wish I hadn’t let my own fear get in the way of loving my neighbor.  I wish I could hug those girls who are now middle aged women and tell them how sorry I am that they had to face this alone — that the church didn’t stand with them– didn’t advocate for them or their baby.

We are in a war with an extremely slick enemy. But we must find our voice — no matter how scared we are, or unequipped, or unqualified.  

This war is not going to be won through social media. It won’t be won with witty quips.  It will be won on our knees in prayer.  It will be won when we use our voice to lift up the 60 million women who have suffered the loss of their child at the hand of people pretending to care about them. 

May the church stand united.  May we unite as the Bride of Christ with hearts filled with love to protect mother and baby.  

This is a spiritual battle, not a political issue, not a woman’s issue. It’s a war between darkness and light.  The lines have been clearly drawn. I don’t stand in judgement but I stand in hope. My hands are open and willing to do what we must to walk along side moms in counseling, loving, helping, adopting — giving them resources, truth, and most of all hope.

I stand on the side of light.  I stand on the side of love.  Who else will rise and be a voice in this wilderness? Will you?

My 7 New Year’s Resolutions

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1. Drink More Water 

How? I have trouble remembering to drink during the day. So, I got a 24 oz water bottle and keep it filled up on the counter. When I get done with one of the bottles, I know I’ve had a full 3 cups of water. If I refill once in the morning, once after lunch, and once after dinner I’ve had all my water for the day. It’s easier to keep track this way than through filling separate cups plus it’s an excellent reminder to keep hydrated!

2. Eat Healthier

How? Who’s to say that New Year’s Resolutions have to begin on January 1st? I actually started this in early December. I’ve been using an app called Wholesome on my phone. It’s so easy to keep track of what I’m eating.

I’m not just talking about fat and calories. This thing tracks all vitamins, minerals, Omega-3s, fiber and more. I really needed a way to track how much of what I was getting.

I absolutely love that it tells me what is in each food I eat – but I can also choose to search by vitamins that I need. I can search by food, vitamin/mineral, find what foods are high in that, or even read more about what that nutrient is needed for.

This app is perfect – at the end of the day if I’m showing to be low in B12 or magnesium I can adjust what I eat at dinner or before bed. It can also track possible deficincies and gaps in nutrition over time.

3. Get More Exercise

How? I’m using a combination of using an elliptical and my Apple Watch to track my fitness. Hubby got me the watch for Mother’s Day last year. I will freely admit I’m not big into excercise but this little watch has helped me get motivated.

It tracks the user’s heart rate, workout, and steps. It is like having a mini-personal trainer right there on your wrist. It encourages me to keep going, to get in a few more steps, one more round of excursive – – it even gives out virtually engraved awards with my name and date of achievement. I love that I can hit mixed cardio and have a dance party with my kids. Its fun and it counts as my workout for the day (as long as I dance for at least 15 minutes-30 minutes).

4. Read the Bible

How? Last year I attempted to read my Bible in a Year. I didn’t succeed in doing so but I did succeed in becoming more disciplined in reading the Word. This year I’m continuing where I left off. Because I’m using a chronological Bible, some of the books are read out of order. I’m the midst of Daniel, Ezekiel, and 2 Kings currently.

I’m going to keep going and even if it takes me 2 full years, I love that I’m seeing the Bible from a different angle. I can see the timeline of events in the Old Testament and getting a richer understanding of when and why certain books were written when they were. Truthfully, it doesn’t matter if you chose a Bible in a Year plan, a chronological plan, or a Psalm a day mixed with the OT and NT. It only matters that you are reading God’s word and allowing it change your heart.

5. Read More

How? I figured out last year that I’m much more likely to finish a book that I start if I read it using the Kindle for iPhone app. I’m already carrying my phone with me most of the time – this way when I get a free moment I can read a book and not surf the net or get sucked into social media. That leads me to my next resolution…

6. Spend Less Time on Social Media

How? Social media makes me grumpy. Half the time it leaves me with a headache and a bad attitude. The problem is I’m slightly addicted to social media. And I had no idea that iPhone offers Screentime setting under the Settings app. It tracks how long you are spending on social networking, reading and reference, and other websites.

It allows you to choose a certain amount of “downtime” each day, you can limit your usage of certain apps, you can restrict certain content and choose certain things to “always allow”.

I love that I can turn off social media after a certain number of minutes. For instance, I choose to allow 7 minutes of social media a day during the week and 1 hour on weekends. That way I can skim my newsfeed and see if anybody has tagged me or written to me before it turns off for the day. Don’t worry, if you need to turn it back on you can always allow to extend an extra 15 minutes a day or turn off your settings all together.

7. Be more efficient with time

How?

MyFreezEasy  — an easy way to start freezer cooking. Erin Chase, the brains behind this awesome service, creates meal plans by diet type or by food type that will fill your freezer for the month. It’s super easy to implement, too! You can customize the recipes to how many people you are feeding, you get a printable grocery list and instructions for cooking and for the day you are putting the meals together. It couldn’t be easier.

Walmart Grocery App –– I recently took the plunge and started using Walmart Grocery. First of all – I’ve tried other grocery services before but nothing compares to this Walmart App! It is amazingly easy to use and search. I just typed in or searched for what I needed, choose a pick up time, and then once it was time to pick up I just clicked a link to let them know I was on my way. My phone’s gps actually tracked me to the Walmart store so they got the heads up that I was almost there. I paid through my phone and also let them know which Walmart grocery parking spot I was parked in. It was seamless. You never have to step a foot outside your car – they load it in the car or truck for you. Through Walmart and MyFreezEasy I’m saving time on my meal planning, shopping, and cooking.