So I’m a 13…life could be worse, right.
I mean my life is gonna get harder in order for it to get better
and I just didn’t get to choose this.
Isn’t that how a lot of us look at life?
It feels safe when we can choose what needs
to change if we are honest, right?
‘If I had a better or nicer house’ life would be better or
easier and I’d be happy. In order to get
to a new house, you must fine-tune the one, you live in to sell. That means going through every space, getting
rid of things, packing things to make it look bigger and better to entice a
buyer. We clean up our mess going
through layer after layer just to find a better house.
The list goes on – you get rid of old clothes
so you can fill your closet back up with new clothes,
ever bought a new or newer
car or tried to sell one?
How about
food?
Ever had to rid your kitchen of the “bad” foods to give you room for the
new and improved healthy stuff…we treat our bodies the same; dieting, detoxing,
fasting, working out, always pushing to lose our current bodies to gain a new
and improved one.
But these are things
we get to choose; we can control.
But for all of us there are always some things we don’t get
to choose, we can’t control, we must handle them as they come.
After I posted my last up-date I had many of you whom I love
and adore asking, “what can I do?” and “Why haven’t you told me?”
I’m sorry, I never meant to keep anything
from anyone. We have just been handling
things as they have come learning and adjusting at every corner. I truly love the kind and loving gestures; it makes
me feel less alone; it makes me feel loved and cared for and I need that so
thank you.
I don’t get to choose
when my “new” and “improved” will come.
There are more people dealing with auto immune diseases now then there’s
ever been.
And I just feel like I am just
another one of them.
Mark and I thought it might help to just fill you in what my
day to day looks like. Most of you see
me out and about and I probably look ok (I can’t wear make-up much because it
makes my face itch – so most of the time I look pretty…well…undone😉).
When you hear I’ve got a liver disease It’s
hard to think of what my “sick” looks like.
Sometimes you just look at me and know, but honestly, I still have more
days that I’d consider as good days then not good days.
My “good” week looks about the same because I know what I
can handle. Unfortunately, when I have a
bad day it takes me an extra day or two to get back to good again.
Monday’s you’ll find me up early, making breakfast for everyone then taking the kids to school. I come back home and spend the day moving as fast as my body will take me. Monday’s are usually my strongest day and so I do what comes best, like all moms, I push myself to get AS MUCH accomplished as possible so as the week moves on a have less I need to conquer. 😊 I never said I was smart. So, on average you’ll find me moving laundry while working (like a REAL job for The Master’s Mark) All week long I schedule jobs, list things that need to be accomplished for our guys. I pay business bills, handle month end stuff, or I’m ordering materials, helping our clients by putting together design plans (lately Mark ends up having to be my go between because I’ve had such a hard time getting over being sick), but I do a ton researching as well). Most Mondays I can even go without a nap, and dinner is planned or started by lunch. After school the kids help me move or finish up the laundry, we all help each other do homework, and they each get a chore or two. I normally serve dinner. But once I sit at the dinner table to eat, I am finished for the night and you’ll find me upstairs in my bed while the kids prep for tomorrow. They come and tuck me in before they head to bed😉
This is what I call a very normal – even above average kind of day – Go me!
BUT when I run hard on Monday, I struggle a bit on Tuesday. I take the kids to school, come back home and
nap because I need to. When I’m done, I get
up and finish things that need to be finished from Monday. I move slower, but I still can move, and I
pick the kids up from school and they help with dinner and then I’m in bed “resting”
right after dinner (this is normal for me).
Now Wednesdays and Thursdays tend to be my kicker days. I sleep in a little – Mark feeds the kids and
takes them to school. My body tends to hurt
more on these mornings, but I get up and do my best to jump into CBS (I LOVE
Community Bible Study). Wednesday I go
to the Leader’s meeting and Thursday I’m at CBS serving as best I can. Most Wednesday and Thursday afternoons I
either go home and nap or you might find me moving super slow through a store
to grab more groceries hanging in until school pick up. Sometimes I even nap in the school pick up
line too, shhhhh😉 These are also the nights I can’t make
dinner or eat at the table unless I’m able to nap.
This is when I get to pause and tell you all what a HUGE
blessing it is to be living with my parents.
Not many adult families could be ok with this and trust me when I tell you that
it can get stressful at times esp. knowing I can’t leave much.
I feel like we are always in the way!
Most people think we are crazy…because…well…we
ARE.
Honestly, I think we drive them
more nuts then they drive us, but God knew that we would need the extra help
and encouragement and it HAS been a much-needed blessing. I help and cover things while mom is busy
writing her teachings – God gives her such amazing insights – she teaches at
CBS! It just so happens that she handles
the nights I seem to need it most. I don’t
feel too bad asking the kids to help her while I sneak off to the couch to nap
so I can get through dinner together.
Fridays, oh I love to hate Fridays. We try really hard to keep Fridays open
without plans because you just never know what it will look like for me. Mark takes the kids to school when he can and
on those mornings, I wont lie to you like I’d like, but I don’t set an alarm. I let my body wake up when it’s had it’s
share of sleep. If I were a college
student this might be acceptable, but to me this is the part that I tell you
that I HATE because most “sleep in Fridays” means that I do not budge until 10
or 11 a.m. One would then think; wow, what
a lazy mom or with that much sleep I should have no problem getting through the
rest of the day, but by the time we get home from school pick up I know that I
will barley get dinner done before my body will need to rest yet again. This is mostly due to my legs swelling and
just burning from the rest of the week. I
can’t even explain the pain. The good
news is that resting doesn’t always mean sleep so if we do anything Friday
evening I either napped like crazy or we stay home to play a game or have a movie
night while mom lays with her legs up, and if plans allow, we get REAL crazy
and call a certain family that comes over at the drop of a hat – our kids LOVE
when we get together, they play quietly together, which helps me feel
relaxed. They have become extended
family to us, and we love them dearly. I
don’t mean to sound snobby about having this particular family over, but we
have become so very close because this mom actually shares my same diagnosis! She understands why I am always in my pj clothes
or swollen and we have to just sit around – but there’s always laughing – hard core
laughing that brings a little side pain, but it’s worth it😉.
Saturdays and Sunday’s vary but you will find me asleep
everywhere we go in the car or on the couch trying hard to get my body super
charged to have a great Monday!
THIS has been my normal for a good year or more now,
yes,
it’s gotten harder these last 3-6 months and
I’m probably needing to slow
myself even more (having NO clue how or where to start once again), but this
has been our family’s normal.
The weeks that have not been good normally involve me doing
too much, getting sick, or not sleeping a night or two because I’m up itching
non-stop…this normally happens 1 week every month (not the itching, I itch all
the time, but the itching SO bad that I can’t sleep part). These weeks I work hard to sleep every second
that I can even on my mega Monday’s to get my body back up and moving again.
I DO go out, but mostly it’s to buy our groceries, and when
I can I use Amazon (who know I’d need them so much!).
When I can’t do laundry,
Ella, Keegan, Mark and my wonderful mom all pitch in and everyone puts their
own clothes away because it’s always been my thing sick or not😉
Yep, I’m a mean mom!
The kids have
always been expected to help with cleaning things because I want them to
understand what hard work looks like.
So
cleaning is also covered.
I think if anyone could do anything for me it would be to
give me energy to do something crazy like go on a date with the hubby or actually
look nice before we go out…
sounds silly but if I spend my energy looking nice,
I am normally wiped before we leave.
I
also do extra things here and there, but I have to plan and prepare and take
the time afterwards to rest back up.
Sometimes you might see me in a wheelchair, don’t be scared, it just means
I am too tired to walk. We adjust and do
what we need to do.😉
I feel like a music box that just needs that little knob
turned as tight
as you can get it and it goes until it’s slowed to a stop…
then it
needs to be wound up again.
I don’t want to make anyone sad or feel bad and I sure will
not say no if a meal shows up - it's hard to ask when you are celiac as well.
I just want to reassure you that when the need comes and
trust me it IS coming, we will ask for help.
I love each one of you – especially if you’ve taken the time to read all
this blabbering.
I did made a list of things we will probably need help with as
this time draws closer and if you are just bored or want to keep reading, by
all means go for it😉
I might need help transporting me to the
hospital I guess I could always call an uber 😊 I think I will need to be going 2 or 3 times
a week.
I might need help prepping dinners maybe doing
several at a time to help me get through the week.
I may need help bringing kids home from school
here and there (I know I have a handful of friends who’d be willing to help
with that too)
We might even take help when we actually get to
move Into our new home whenever it gets done (my bedroom is on the first floor –
totally planned that with the transplant in mind).
The time IS coming so just be ready.
I wanted to also say something
about prayer to end this up.
When I say ‘prayers
is all we need’ I’m not saying that in a light or superficial manor.
I’ve seen people healed after prayer, I KNOW
the power of Jesus, and I have been prayed for in the midst of times that I know
I would not have been able to walk through if the prayers weren’t there.
I have felt the peace that is completely NOT
understandable, that makes NO sense as to why I was able to feel peace except
for “…because I was praying for you.”
If
you wake up and think of me or my family, I expect you to give me a few seconds
of prayer. God tells believers that it
is our job to spur one another on in this life.
We are to encourage each other, up lift each other.
So please do that for me now.
Prayer for anyone God places on your heart
and mind is important.
God hears our prayers, they work,
they protect, guide, encourage, uplift, build-up, refresh, awaken, make calm,
give hope, and they also save.
I know
that your prayers carried me and my family through the scariest nights of our
lives.
I was able to feel Joy and Peace
while being pushed into the ER, being poked more times than I thought possible,
having my favorite jammies cut off so the nurses and docs could get more things
going to save my life.
I remember praying
out loud in the midst of it all, being able to recite bible verses to ease my
mind, some of which my nurses would say with me, ones I had written on my heart.
During all the beeps all voices moving quickly
around me while I lay on the bed,
watching light after light pass by as they
ran me into a procedure or a different room for a new test.
Seeing my family and feeling more concerned
about them and how they were handling things then what I was going through.
The feelings and the calmness that I had wasn’t
natural, it was in no way normal, it was God given because as soon as word went
out, as soon as neighbors saw and gathered and friends were told, prayers
started for little old me and God moved.
Prayer IS the most important gift
you can give me.
Trust me, I will never
go into anything without it.
I know and expect
God to show up big when we pray because I have seen Him do it time and time
again throughout my entire life.
He’s the
God who moves to us when we call.
So
when I say please pray for us I truly mean it because our God is for us, and
He
works good for those of us who love Him, and big things happen when
His people
call upon His Mighty Name.
The. End.
(I think I might have just dropped
the mic😉)
...IF you made it to the end here, then know I dropped that mic for YOU!!