Wednesday, October 2, 2013

Hold Me Up

I had a pretty difficult week last week.  Nothing over the top specific that made it that way.  Hormones? Stress catching up to me? Over tired? Spiritual attack? Fighting sickness?  Scott even said I officially started getting him worried.  Glad to hear that I’m not such a roller coaster all the time and it even got his attention.  And for the 10th time, “No, I’m not pregnant, babe!” ;) 


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.