On Thursday, the fog started to noticeably lift after some
friends prayed for me at my Moms Together meeting. I had long been feeling a bit discouraged
about something and apparently this was the time to unload. My friend, Audra, asked a simple
question. “How are you?” Instead of ignoring the simmering anguish in
my heart and putting on my mask with a cheerful, “Fine! How are you?” I chose to be real. To be honest.
Sometimes people can ask that question and you can tell they don’t want
an honest answer unless you are indeed, actually fine. They just mean to be polite and don’t want to
be bothered with a half-hour-long answer.
She’s not like that though. And
poor girl, a half-hour answer is what she got.
Or it felt like it anyway.
So here is what was on my heart to share, feelings that have
been building for quite awhile. My sweet
Levi. I don’t mean to share only about
my stresses, the worries of a mother, the struggles that he goes through… but
these do threaten to take up residence in my spirit. And every so often, after realizing it, I
need to clear out their presence.
Unload. Cast over my cares
AGAIN. Here I am in tears again because
I’m bugged that I can’t live in constant faith and peace in this area (or
several others). Many parents struggle
with more difficult situations, but these are mine.
Lately, I’ve been more acutely reminded of Levi’s
delays. The first is potty
training. It sounds dumb, right? He’ll
learn when he is able. Stop stressing
about it. In all honesty, I hate potty
training. And I knew Levi would be the
biggest challenge in that department. My
philosophy is, wait until their ability to pull up and down their pants, climb
on the seat, etc. needs little to no assistance. So in my mind, he still isn’t ready. The special ed. preschool that he attends
four days a week, however, started the process ready or not. They ask that the kids come in pull-ups and take
them to the potty on a specific schedule, and we are being told that he is
potty trained at school. Well, this
victory doesn’t carry over to home. He
doesn’t communicate the need to go BEFOREHAND, so on more than one occasion I
have had a joyful little boy come to me with a soiled and smeared lower half,
pulling me to the bathroom where, along the trail, I find spots on the carpet, a
brown toilet seat, a diaper in the corner.
He looks up at me expectantly asking for M&Ms because he sat. AGH!
We’ve had very little success with good timing at home since we are
often on the go. And for those of you
who don’t know what Levi wears on a daily basis, he’s got clunky braces on and
oversized shoes and a strappy set up that circles his waist, wraps towards his
inner thighs, down his calves, and hooks on his laces to secure half-way up his
shins. Did you catch all that? We need to undo the strap concoction with
every potty attempt. And then of course
do it back up. He definitely can’t
tackle any part of his set up by himself.
I have no choice but to just keep taking it one day at a time. Try when he wants to try. Hope that his sense of timing improves as he
gets older. I need plenty of warning to
undo his get up. Wait patiently. Recently, little brother Carter has taken an
interest and has had some success going on the potty. And of course this sparks Levi’s fire to try
longer and more frequently because he wants those M&M treats too! So for I-don’t-know-how-long, you can find me
crouched in front of the toilet, cheering on a little boy longing to catch up. I’ll say it again: I hate potty
training. And now we are involving
Carter. This brings me to delay #2.
Speech. Carter has
taken his time in branching out in communication. He has been fine getting by with a limited
variety of words, and it hasn’t concerned us.
Now he is trying to mimic a lot more and he recently surprised us by
counting out objects. I knew this time
would come - the time when little brother surpasses his older brother in speech,
to name one. They are pretty even right
now, but in a matter of weeks, Carter will take off. I feel pulled between two emotions: happiness
that I can talk with Carter and hear his cute sentence formations and tone
imitations, and sadness that Levi is being passed up by his younger
brother. What numbs the sting is knowing
that Levi, at this moment, is (in the best sense) completely oblivious of this
unnatural situation and still as happy and joyful as ever. Meanwhile, we celebrate Levi’s new words that
seem to come up daily. We are working on
stringing them together to form cohesive sentences. Sometimes I catch myself feeling discouraged,
then I remember how far he has come in even a year.
Delay #3: physical stuff.
I mentioned the braces and straps he wears. Their intention is to force his feet out
straight and to improve range of motion so he will walk on his flat feet. We are about to schedule his first botox
injection (weird, I know). This will
paralyze portions of his way over-toned muscles so he can build up other areas
to balance things out. This step leads
to more appointments, painful injections, and an uncertainty of it doing
anything long-term. We’ve also been told
that in a few years he will most likely be eligible for a surgery that will
clip his muscle because he is such an extreme case. Nothing in these scenarios is
comforting. My boy will feel pain and I
need to view it as a means to an end.
Not knowing if his physical therapies are really benefiting him is a
tough pill to swallow. But we have to
try and keep trying.
Delay #4: school.
This isn’t a specific delay. It
is where he is based on his delays. I
might burn some bridges in what I am about to say by implication, but this is
my turn to share. This is me being
honest, and you can love me or leave me. ;)
He is in a public elementary school where they have a special ed.
preschool. He gets services provided by
the state, and this is part of the package.
While I believe the schedule and routines are very beneficial for him, I
have no desire for him to stay in this public system. Last year when I blogged about Levi’s
cerebral palsy diagnosis, several friends messaged me encouraging notes
describing stories about their CP kids.
How they were mainstreamed, what their therapies did. It may be foolish, but I am clinging to their
successes. Each CP case is
different. I have no business comparing,
but I can’t help but wish we will have the same kind of story to pass onto
someone like me in the future. My desire
is to have all of my kids in the same place.
That place happens to be a Christian school where the big three are
already. I break down and cry, quite
literally!, when I consider that dream being threatened. I cannot minimize the amazing teachers, family
feel, wonderful memories that I have that Noah, Hayden, and Gracie are already
creating for themselves, and the excellent spiritual formation that will be a HUGE part of who they become. This place is special; you have no idea. I get sick to think of Levi missing out on
that “village”. God surely knows the
future and has a specific plan for Levi.
I am not in control and we need to take His lead day to day. But that doesn’t diminish the weight of my
desires.
The fact that Levi has been named by many as “the happiest,
most joyful kid they’ve ever known” lifts me up whenever I hear it. I wonder if God planted that spirit in his
core because He knew he’d need a different set of gifts to get through his
struggles. God knows, I’m learning so
much by being his mom. He teaches me to
giggle more. To embrace what matters at
a slow pace. To trust in God’s plan and
LET GO.
But when I am tired and I let the uncertainty of the future
creep in and cripple me, I fear that that day won’t come. The day that he’ll be self-sufficient, have a
fluid conversation with me, walk with his heels down without those stinkin’
boots on, actually go potty in the toilet BEFORE he’s already gone in his
diaper (lol). I have no promises to hold
onto except the most important one: He is in God’s hands – the most capable,
healing, loving hands that are the only ones that matter. And my job is to walk him through each trial
- no matter how long that trial is! - reminding him of whose hands are lifting
us up. And I am realizing that when he
has a trial, it is also a trial for me.
We may have different lessons to learn, but we walk through it
together.
Being prayed for by my friends on Thursday really did lift
my spirits and cut through some of the other heaviness weighing on me. But I’m still struggling. In these seasons of discouragement, I am
asking you, my friends, to hold me up and walk with us. Don’t tell me it will all be okay. Don’t pretend to have a crystal ball. Don’t say ‘It could be worse.’ (I know that,
remember?) Instead, please remind me to
keep my eyes on eternity. Everything
I’ve written about pales in comparison to what truly matters. I want Levi to love Jesus. And even though he can’t even say His name yet,
we know he does.