Which hope we have as an anchor of the soul, both sure and steadfast… Hebrews 6:19
Many people see hope as a way to keep pushing forward, fight the good fight, give it all you’ve got, and other such motivational phrases that often find their way into sideline speeches from coaches. But how often can you return to that hope? How many times are you expected to pick yourself up, stare those dashed hopes in the eyes and find the good, the silver lining? Is it the old standby of forgiveness… seventy times seven that is so often quoted in Matthew?
Three years ago, we were in a hope and crash pattern. Just a few months earlier, our son, our fourth baby and first boy, started having seizures, and the word hope turned into a word we heard so often it lost meaning.
“Let’s just hope this is a one time thing”… It wasn’t. His over thirty-minute long seizures came at us every 14-16 days, like clockwork. “Let’s hope the MRI shows us something we can fight”… It didn’t. Just like the numerous cat scans, basic blood panels and x-rays didn’t.
But that’s good, right? No bad news is good news, right?
Yes and no. Every time one of these tests didn’t show us something helpful, we knew that the answer, whatever it was, would be more difficult to treat.
“Let’s do a full genetic epilepsy panel, we hope it doesn’t show anything and he’ll grow out of these by the time he turns two”… but it did. It showed not one, not two, but three rare, fluke, epilepsy genes. Any one of them can causes catastrophic levels of epilepsy, and my sweet baby boy had three. We found out just a few weeks after his first birthday. Now what do we hope for, what do we pray for?
We have anchored ourselves to the comfort that God provides to us each time he has a seizure. We have anchored ourselves to the safety that God has given our son, once again, by bringing him through another seizure. We anchor ourselves to the hope that a treatment will be found that will help. Most importantly, we anchor ourselves to knowing, without a doubt, that one day this suffering will be gone, that heaven awaits us, and on that last day, our Savior will look at our son, and say to him “You are healed, you are perfect.”
Over the past week or so, the internet has been full of posts about Cameron Boyce, the young actor who died from a seizure in his sleep. It seems everyone is shocked by it. They never knew seizures could kill.
Their innocence on the subject is not uncommon… it is the majority of the world who thinks this way.
As an epilepsy mom, I am, of course heartbroken for his family, knowing that their pain could soon be my pain.
Maybe you know someone who has epilepsy. I know more than once I’ve mentioned my son has epilepsy and I’ve been met with “oh yeah, my second cousin has that!” or “Oh my child had a febrile seizure once, it was so scary, it lasted 20 seconds.” Hear me know when I say I am not discounting the fear of any parent who has to witness their child’s seizure. It is scary. But, so many people chat it up like nothing… “oh yeah, my second cousin has a weird freckle on their finger too!”. This is not a comparison we want you to be able to compare to. We love you too much to want you to have to face this.
Because of the loss of Cameron, awareness of epilepsy has been raised, in the worst way possible, but raised. I don’t know what his official diagnosis was. Many people are diagnosed with epilepsy… no fancy names, just epilepsy. Others, face words like catastrophic, high mortality rate, global delays, and regression. These are the words I face.
Have you ever wondered why a parent of a child with an intractable (medications don’t work) looks exhausted? Ever wondered why almost every conversation with them eventually makes the way back to seizures? It is because that is all we can concentrate on. We have to.
And yet people just don’t understand why we seem sad, depressed and anxious at all times.
In comparison, when a child is diagnosed with cancer, everyone who knows and loves that child feels a deep, punch-to-the-gut, sadness. And I know this to be true because I have felt that punch when hearing that news more than once.
Various websites will tell you that 10% of people with epilepsy will die from a seizure.
According to curesearch.org 12% of children diagnosed with cancer do not survive.
And then there’s those tougher epilepsy diagnoses, the ones that cause the parents to rearrange their entire lives, houses, work, vacations. I know because it is a number that haunts me… 20%. There is a 20% chance that my son will not live to adulthood.
Every diagnosis comes with the scary side. I am not discounting the scariness of cancer or epilepsy. But I am asking that the next time you talk to a parent who has a child with epilepsy, understand the scariness of it. Recognize that epilepsy has a death rate nearly as high as childhood cancer, and more severe epilepsy cases have a higher death rate than cancer.
There are no “my kid is worse off than yours” contests, but the reactions of many make us feel like our child’s 20% chance of death isn’t as scary to us as the parents who are facing other diagnoses.
If you’ve been paying any attention to hockey, or if you live anywhere in the state of Missouri… you’ve heard the song Gloria more times than you ever imagined you would in your lifetime! I’m choosing a little Stanley Cup spirit to launch the t-shirt portion of my blog! Check it out!
Shop the Etsy Shop to place your order! Multiple colors and sizes available.
Growing up my family of six ate together every night. I have four kids, in the oldest of four kids, my mom did it so I can too, right?
My favorites are dinners that require the absolute minimum in dirty dishes. After cooking, the last thing I want to do is more dishes.
So I came up with this one bowl, one pan wonder. My only extra dishes for this were a cup and an ice cream scoop.
2 boxes of Rice a Roni (in two flavors even, Beef and Pilaf, because that’s what I had on hand)
2lbs of ground beef
Salt and Pepper
All in one bowl, seasoning packets too!
I used the Ice Cream scooper (the biggest one) heaping full and plopped them all in. I couldn’t even get all of the mixture until I rolled them into balls.
I mixed 2 packets of gravy mix into 2 cups of hot water.
Poured the mix over the meatballs and added 3 more cups of hot water.
Covered the pan and popped it into a 350 oven for an hour. Hubs thinks 30-45 minutes would have done it, so go for a lower time and check a meatball to see if they’re done.
This conveniently makes its own (thin) gravy right there in the pan. It does have rice in it so if you don’t feel the need to serve it on a second starch you’re good! I served it with just a side of veggies.
Kids loved it. Hubby loved it enough to eat t he leftovers the next day!
I have a Vallonia house. Before it was my Vallonia, it was my sister’s Vallonia, and before that, it belonged to my grandparents. My mother’s parents, if we’re being specific.
The Vallonia was designed by Sears. This is a description from Sears.com:
hour has arrived. Dad gathers Mom and Sis into the carriage. He hops in
the wagon with his brothers to ride off to the railroad station. The day
and hour have come to greet the first shipment of your family’s
brand-new house. All the lumber will be precut and arrive with
instructions for your dad and uncles to assemble and build. Mom and Dad
picked out No. 140 from Sears, Roebuck and Company’s catalog. It will
have two bedrooms and a cobblestone foundation, plus a front porch—but
no bath. They really wanted No. 155, with a screened-in front porch,
built-in buffet, and inside bath (!), but $1,100 was twice as much as
Dad said he could afford. In just a few days, the whole family will
sleep under the roof of your custom-made Sears Modern Home.
Entire homes would arrive by railroad, from precut lumber, to
carved staircases, down to the nails and varnish. Families picked out
their houses according to their needs, tastes, and pocketbooks. Sears
provided all the materials and instructions, and for many years the
financing, for homeowners to build their own houses. Sears’s Modern
Homes stand today as living monuments to the fine, enduring, and solid
quality of Sears craftsmanship.
No official tally exists of the number of Sears mail-order houses
that still survive today. It is reported that more than 100,000 houses
were sold between 1908 and 1940 through Sears’s Modern Homes program.
The keen interest evoked in current homebuyers, architectural
historians, and enthusiasts of American culture indicate that thousands
of these houses survive in varying degrees of condition and original
appearance. It is difficult to appreciate just how important the Modern Homes
program and others like it were to homebuyers in the first half of the
twentieth century. Imagine for a moment buying a house in 1908. Cities
were getting more crowded and had always been dirty breeding grounds for
disease in an age before vaccines. The United States was experiencing a
great economic boom, and millions of immigrants who wanted to share in
this wealth and escape hardship were pouring into America’s big cities.
City housing was scarce, and the strong economy raised labor costs,
which sent new-home prices soaring. The growing middle class was leaving the city for
the—literally—greener pastures of suburbia as trolley lines and the
railroad extended lifelines for families who needed to travel to the
city. Likewise, companies were building factories on distant, empty
parcels of land and needed to house their workers. Stately, expensive
Victorian-style homes were not options for any but the upper class of
homeowner. Affordable, mail-order homes proved to be just the answer to
such dilemmas. Sears was neither the first nor the only company to sell mail-order
houses, but they were the largest, selling as many as 324 units in one
month (May, 1926). The origin of the Modern Homes program is actually to
be found a decade before houses were sold. Sears began selling building
materials out of its catalogs in 1895, but by 1906 the department was
almost shut down until someone had a better idea. Frank W. Kushel, who
was reassigned to the unprofitable program from managing the china
department, believed the homebuilding materials could be shipped
straight from the factories, thus eliminating storage costs for Sears.
This began a successful 25-year relationship between Kushel and the
Sears Modern Homes program.
To advertise the company’s new and improved line of building
supplies, a Modern Homes specialty catalog, the Book of Modern Homes and
Building Plans, appeared in 1908. For the first time, Sears sold
complete houses, including the plans and instructions for construction
of 22 different styles, announcing that the featured homes were
“complete, ready for occupancy.” By 1911, Modern Homes catalogs included
illustrations of house interiors, which provided homeowners with
blueprints for furnishing the houses with Sears appliances and fixtures. It should be noted that suburban families were not the only Modern
Home dwellers. Sears expanded its line to reflect the growing demand
from rural customers for ready-made buildings. In 1923, Sears introduced
two new specialty catalogs, Modern Farm Buildings and Barn. The barn
catalog boasted “a big variety of scientifically planned” farm
buildings, from corncribs to tool sheds. The simple, durable, and
easy-to-construct nature of the Sears farm buildings made them
particularly attractive to farmers. Modern Homes must have seemed like pennies from heaven, especially to
budget-conscious first-time homeowners. For example, Sears estimated
that, for a precut house with fitted pieces, it would take only 352
carpenter hours as opposed to 583 hours for a conventional house—a 40%
reduction! Also, Sears offered loans beginning in 1911, and by 1918 it
offered customers credit for almost all building materials as well as
offering advanced capital for labor costs. Typical loans ran at 5 years,
with 6% interest, but loans could be extended over as many as 15 years.
Sears’s liberal loan policies eventually backfired, however, when the
Depression hit. 1929 saw the high point of sales with more than $12
million, but $5.6 million of that was in mortgage loans. Finally, in
1934, $11 million in mortgages were liquidated, and despite a brief
recovery in the housing market in 1935, the Modern Homes program was
doomed. By 1935, Sears was selling only houses, not lots or financing,
and despite the ever-brimming optimism of corporate officials, Modern
Homes sold its last house in 1940.
Between 1908 and 1940, Modern Homes made an indelible mark on the
history of American housing. A remarkable degree of variety marks the
three-plus decades of house design by Sears. A skilled but mostly
anonymous group of architects designed 447 different houses. Each of the
designs, though, could be modified in numerous ways, including
reversing floor plans, building with brick instead of wood siding, and
many other options.
Sears had the customer in mind when it expanded its line of houses
to three different expense levels to appeal to customers of differing
means. While Honor Bilt was the highest-quality line of houses, with its
clear-grade (no knots) flooring and cypress or cedar shingles, the
Standard Built and Simplex Sectional lines were no less sturdy, yet were
simpler designs and did not feature precut and fitted pieces. Simplex
Sectional houses actually included farm buildings, outhouses, garages,
and summer cottages. The American landscape is dotted by Sears Modern Homes. Few of the
original buyers and builders remain to tell the excitement they felt
when traveling to greet their new house at the train station. The
remaining homes, however, stand as testaments today to that bygone era
and to the pride of home built by more than 100,000 Sears customers and
fostered by the Modern Homes program.
Before we purchased it, a few changes had already been made, like the
removal of the wall between the kitchen and a bedroom. My grandparents
used that “bedroom” as their eating area. My family now does the same.
But, before they bought it, someone else put their own touches into the
Now it’s our turn. I am so looking forward to fixing up the house to
make it our own, to make it fit our family and represent our style.
…. wanna watch?! Stay tuned!
*This post was originally published on my previous blog: My Vallonia
You know when you buy an old house and it has all sorts of
“surprises”? Little nooks and crannies, unusually placed closets,
drawers or doors… you know, fun stuff?
Well, we didn’t get too many fun surprises when we bought our
home… it’s been in our family for probably around 20 years… but we did
start seeing things differently, like the basement. What was, for my
grandparents and sister, a storage area and tornado shelter/canned food
cellar, I now see a future play room or hang out space for my kids in
one area, a craft/office area for me… a tornado shelter (did I mention
we’re in Missouri?) and who knows what else.
So, suddenly the things that weren’t my problem, are, now, my problem.
Case and point… this sink:
I really don’t remember if my grandparents used this sink on a regular
basis. I’d guess they did. They gardened. And their washer and dryer
were right next to this sink.
My sister didn’t use it at all. She didn’t really have a reason to, and she was too busy to spend the time cleaning it.
And it’s just been sitting there for a while, forgotten about. The
house was empty for a while after my grandparents and before my sister. A
constant dripping faucet, a few nails that had fallen into the sink…
the squirrel who found its way into the basement but not out….
I had poured bleach into the sink and let it sit there for three
days. Nothing happened. Bleach, folks… undiluted, straight from the
bottle, a whole gallon of bleach did nothing to help this beautiful (I
promise it really is beautiful under all that crud) sink.
Enter this bottle:
I couldn’t believe what happened. Within seconds of me pouring this
purple magic onto the sink it the foaming, fizzy bubbles started lifting
the crud. The rust and hard water scales were literally floating to the
surface. I took my wimpy green little scrubbing pad and went over the
whole sink for about 5-10 minutes… rinsed and Bam!
Considering where I started, I was more than impressed! I did use the
whole bottle, and why wouldn’t I, seeing how much the bleacher didn’t
do for the sink. In reality, I probably could have been a little more
conservative with the Lysol and had enough for a second round. But no
worries. I will go get another bottle and see if I can clean up the
rest… hence the “part I” in the title of this post!
*This post was originally published on my previous blog: My Vallonia
We have this little strip of land between the sidewalk and the road.
It’s not much, but it’s just awkward enough that it’s not the perfect
width of a lawn mower, so it requires a little wiggling to get it all
mowed. And it is a collection spot for those little gum balls (or pokey
balls as my daughters call them) that fall from a tree in our yard. We
decided almost immediately that we wanted to do something to that strip.
We thought of phlox, but until those really take off, they are a little
straggly and let the weeds through. So, the hubs decided that rainbow
rock was the way to go!
Loooooots of digging later, we got most of the dirt removed and laid down some rubber scraps we’d found in the basement.
Unfortunately, the husband had to go out of state for quite a few
days due to a family illness, and let’s face it… this wasn’t a job that I
had the muscle to do alone. So we waited till he got back and then
tackled it again.
…as a family.
We ended our strip by putting in some bricks.
One more box checked off on our very long to-do list to fix up the Vallonia and make it our own!
*This post was originally published on my previous blog: My Vallonia
When you have a child who is medically complex, the daily life
strain is overwhelming. Therapies are one part, doctors visits are
another. Then there’s daily meds, meal planning (not the family meal
planning, but planning and prepping meals for your Keto kid) and then
the general daily extras that your kid requires.
When you have a seizure kid, like mine, you fight for a way to stop
the seizures, meds, doctors visits, Keto meals… and the daily extras…
plus seizure trigger avoidances like baths, excitement, pooping, food,
temperature changes, full moons, nothing (because sometimes there just
is no known trigger). You know they are at risk for SUDEP (sudden
unexplained death in epilepsy) so you don’t even take a breather when
they nap, because what if…
The wins are the seizure free days. And really, there was a point
that we didn’t even celebrate the seizure free days, we just celebrated
the days he didn’t lose a lot of blood from smashing his face into the
floor/table. Those were winning days. I remember chatting with our
pastor one day at Vacation Bible School. He said something about “good
days and bad days?”… and at that point there were no good days. Every
day was bad. Every day was filled with seizures and blood and bruises.
Currently my son IS having a good streak. He has been visible seizure
free for over two months. Considering he was having over 25 visible
ones every day? And about 100 non-visible ones every day, we are
winning. Our efforts are paying off. But what have I realized in this?
I don’t know who I am anymore. I don’t know how to “mom” in a seizure free world.
Part of it is that my son is wanting more independence, and I want to
be able to give it to him. I let him watch tv in a different room than
I’m in… and I just wander by every 5-10 minutes to make sure he’s still
ok. I have even loaded a whole dishwasher at once without stopping to
check on him.
Because of his diagnosis, Dravet Syndrome, there are still issues.
He’s not your average kid who just throws seizures into the mix.
Medications and brain injuries (from seizures) have delayed his
development and speech. He has no sense of fear or danger. None. He
still takes lots of efforts even if I’m not having to give him rescue
medications to stop the seizures every week.
So here I sit. Torn. I’m a seizure mom, a Dravet mom. But I’m also so
many other things that I’ve given up to care for him. Do I try to go
back to those things? Hobbies, friends, work… am I even a valuable
employee anymore since at any time the Dravet Dragon could come
I celebrate the wins for him. And he is definitely worth the celebration… but when you know the celebration can’t last, that there are still so many other daily struggles, it does make it hard to celebrate as much on the inside as you show on the outside.
*This post was originally published on my previous blog: The Mom Strong Life
A month ago we took the plunge… the Keto plunge… well, actually the
MAD (Modified Atkins Diet) plunge, but it is a diet with the goal of
getting a person into ketosis.
It’s been a challenge. Not the ketosis part, no, that wasn’t too hard to achieve… but the meal part. For all six of us.
B’s neurologist had suggested trying the Keto diet to help get
seizures under control. I was unsure of the realisticality (sure it’s a
of it for a family of six. We’d heard of other families having success
with MAD, and found it to be a little less daunting. So we’re giving it a
B is allowed 10 net carbs a day. That makes all of those super yummy
Pinterest recipes almost impossible… get the tiniest bit too much of the
“serving” and he’s gone over his limit for the day.
We cleaned out almost all of the non-low-carb foods from our house
when we started, but left a few “treats” for our three girls to have
while B is napping.
But today was the day the plan went awry. The bag of mini Hershey
bars got left out on the table and B wandered in and helped himself. The
girls were pretty upset they’d made the mistake. So was he when I took
the candy away… since he’d already gotten more than a taste.
So… I set off on a mission to make some candy for all of us to enjoy!
I knew I needed something with virtually zero carbs, and these are the
One of the things that we have found hope in, on this crazy “Extra
Needs Kid” journey is getting our son a service dog to alert us to
seizures. The costs involved are not small. The total costs will come to
at least $25k. I’ll get into the reasons it’s worth it in another post,
but for this one, I want to share with you how we raised a chunk of
that money without having to plan a big event or ask people to buy
anything. There’s nothing wrong with that, and yes, we did those types
of things as well… but this post is about our biggest fundraiser so far…
one that I did NOT think would be!
Shoes. Yep, shoes. All kinds: slippers, sandals, flip flops, snow
boots, cowboy boots, work boots, glitzy glamorous heals and everything
We collected shoes. Piles and piles, truck loads and trailer hauls of
shoes, all for a fundraising company called Funds2Orgs. There are a few
restrictions for the conditions of the shoes; no holes, good soles, the
heels not ripped up etc. and they’ll give you a good guide to go on.
You collect the shoes, pair them together with the provided rubber
bands and put them in the provided bags in batches of 25. The company
will come at the end of your fundraiser and pick them up. They’ll pay
you $.40 a pound for the shoes.
The shoes go to 25+ developing countries… and people LOVE that aspect, so make sure you share it a lot!
So here’s how we marketed our fundraiser to get over 600 bags of shoes in 3 months.
Create a fundraiser name with hashtag. Ours was #2Shoesfor4Paws. It was cute, catchy, and related.
Facebook Group: we had already set one up for people to stay updated
on our son’s medical issues… so we did have a good following (just under
1k) before we started the fundraiser, but if you don’t have one, make
~Do a group instead of a page. Page stuff gets hidden on FB a lot.
Make your group a public group! Very important! This ensures that
friends of friends see your posts when you tag people in them.
~Do a live video in your group explaining what you’re going to be doing… make it short and sweet!
~THEN add friends and family to the group. They can see the video
first thing, know what the purpose of the group is and leave if they
Set a goal and share it. I told everyone that our goal was 400 bags
of shoes… I NEVER expected to hit it, but I wanted to give people some
motivation to donate… you know how many we ended up with? Over 600 bags
I. Was. Floored.
So here’s how we did it…
Flyer: Create a flyer for your shoe drive. Honestly we didn’t print
any, but plenty of other people did (from the group you so conveniently
created and posted the flyer in) and put it up at their jobs, churches,
When: you can gather shoes from groups of people as the weeks pass,
but I also set up a weekend for a drop off site at a central location in
our town. We used a building that is part of our church, located on the
main highway through town. Advertise this weekend but make sure people
know that they can get shoes to you before then.
Who: who do you contact for shoes? First of all, your Facebook group will generate a lot of mini drives.
~Businesses. My husband works for a company with multiple stores in
about 10 towns within a few hours of us. Four of them set up collection
barrels with a flyer hanging on them. We collected over 100 bags of
shoes just from these four locations. My friend also set up a collection
basket in her boutique and offered her shoppers a $5 discount just for
bringing in a pair of gently used shoes to donate. She herself also
donated some extra inventory from her store. A restaurant with two local
locations each set up a box. A physical therapy place did too. We
didn’t ask any of these places, they saw our Facebook posts and took it
upon themselves. The nursing home that my dad works at held a collection
Schools: We talked to the principal at our kids’ school and she let
us do a competition between the grades. We ended up getting 615 pairs of
usable shoes and we took popsicles to the winning class. A high school
offered their students a non-uniform dress down day for bringing in two
pairs of shoes. One school’s (FIVE hours away) Jr. Honor Society hosted a
one-week drive and collected over 600 pairs of shoes. GET SCHOOL
These two pics were taken at two schools… Immanuel Lutheran School
(top) in our home town, and Martin Luther Academy (bottom) in Kansas
City. The JR NHS set up a shoe drive at MLK and blew past their goal!
Churches: I emailed several churches and asked them to put a few
sentences in their bulletins. Many of them did. Some did individual drop
offs, some we picked up, some brought to our drive day.
Family and Friends: this is HUGE! Don’t let distance stop you! We
live in southeast Missouri. My parents took their huge van and went to
visit family in South Dakota, Nebraska, Kansas City and St. Louis. They
picked up from multiple friends and family in each location and brought
home almost 3,500 pairs of usable shoes!!!
We drove a few hours away and met a longtime friend that I’d only
known online till that point. She drove a few hours to meet us with
shoes she had collected and she brought 33 bags worth of shoes!
Facebook tags are VITAL! When you tag someone to thank them, because
your group is public, their friends see the tag, and they might have
some shoes to pass along. Tag businesses… do shout outs… make it worth
their while to collect shoes for them. They are helping you out… give
them the free advertising!
Don’t get behind!
Keep up with your shoes. You don’t want to just let them pile up. It
is a lot of work to sort, rubber band and bag them up. We had 10 people
working together one day, and they did 110 bags of shoes and it took
them about 6 hours to do it. With TEN people. It’s worth the work, trust
me… but it’s time consuming!
Extra bags/bands. So this was the only issue we had. It takes a week
to get bags from the company. When you fill 35 or 85 bags (depending on
whether you had a 50 or 100 bag kit) they will send you more bags and
rubber bands. Free. But it takes a week to get them. This is another
reason you want to stay on top of the shoes. We were collecting shoes so
quickly from so many places that on several occasions, we had piles of
rubber banded shoes but no bags to put them in. We ended up ordering
some clear ones off of amazon and buying extra rubber bands too. This
isn’t mandatory. It was only because WE weren’t patient enough to wait!
This was my son and I with our 600th bags of shoes!
Space! You will need space to work on the sorting/bagging of shoes.
You will also need a space to store the bags until Funds2Orgs picks them
up. If you don’t have the space personally, see if a local storage unit
business will donate a storage space or give you a discount since it’s
Most importantly… have fun with it! Play music! Have snacks! Make it a shoe party!
ENJOY pick-up day! Say farewell to all your hard work and wait for the check to arrive!
*This post was originally published on my previous blog: The Mom Strong Life