In the Trenches

Even good and wonderful stuff coming at you all at once can feel overwhelming and undoable.

The other night Fred fell head first into the 7ft bean bag we recently purchased (for therapy reasons for both kids) and mumbled something about being in the trenches.  It actually resulted in both of us laughing and surrendering a little.

We are in the trenches.  Good trenches.  Positive, life changing, God centered trenches.

But I joked recently that instead of catching everything that is coming my way, I think I'm going to start ducking.  Or I may try and deflect them in another direction.

But I don't want that either.  I want what is mine and whatever comes my way.

Did I just say that out loud?

I'm so sorry I haven't updated on Logan in so long.  So many of you have asked about how he's doing and how the new supplements are going.

The short of it is that the potentially life changing, amazing, few-to-none side effect supplements did nothing.  In fact, I don't know that it was because of them, but he seems to have been getting gradually worse over the last few weeks.  And to top it off, the first round of P5P (Peridoxal 5 Phosphate or B6) that we received had sweetener in it, even though we stressed no sweetener to the pharmacy.

Because the script wasn't written to call out no sweetener, it was a tough call as to who was really at fault.  So....we trashed the rest of the $150 bottle of liquid and the pharmacy and I split the cost of the new 2 week supply.

Did the new sweetener he took from the first batch have any adverse effects?  Who knows.  It wasn't a good thing though, that's for sure.

So we are finishing up this round of supplements and then we are done with these.  I guess the bright side is that we take a couple things out of the rotation.  We give him so much stuff during the day that eliminating something is always good.

We also increased one of his seizure meds yesterday.  Over the last three weeks or more he seems to be slipping into this yucky world.  Not a very technical term, but yucky is what it feels like.  He falls into this stare where everything seems glazed over and then his little chin or eyes or head or whole body will twitch or jerk one big time.  At the end of it he will smile, which is the best and worst part. It's a beautiful smile, but not a response to anything beautiful.  And then we get a few minutes of Logan.

Next thing you know, we've lost him again.

Add to that the seizure activity and sleep and there is very little time left in any day for Logan to really live.

I don't use this phrase often because I just don't like it, but it sucks.  And what's worse, is that is kinda what we are told to expect from epilepsy, his form of epilepsy and everything else he has going on.

Really?  That's ok?

I want more.  I want better options.  I want quality of life to matter as much as cost of medications and insurance claims.  I want pharmaceutical execs and insurance industry leaders to spend the day with us or any family like us.  I want them to lose sleep at night and worry about the long term effects of all these medications on their little ones.

Ok, so I don't want bad things for them, but I want them to know beyond their office desk and the paperwork that shows who we are.  I want them to know what it's really like.

And then there is Logan's development.  I have prided myself in seeing Logan for who he really is and not what he was or what I want him to be.  I've always tried to rejoice in what we do have while still hoping for all that can be.

Most days I do that pretty well.  

Yesterday we went to Logan's field day.  He hasn't really been able to attend school, but I really wanted to do all that we could to get him to field day.  Mainly so he could ride a horse.  He LOVED it last year and he just doesn't have the opportunity to ride other than t field day.

So we get there and I ask them if I or someone can ride with him, because he can't sit on his own.  At first they explained how sorry they were to not be able to do that, but then a sweet young guy stepped up and said he would ride with him.  

As I hoisted him onto the saddle and ran to grab my camera, I watched and waited for the same leg kicks and squeals that we saw last year.  

I kept taking pictures...and waiting.

But this year, there were no squeals.  Most of the pictures and video that Kim took are of the top of his helmet, because he kept his head down the entire time.  No sounds, no flying arms, no busy legs.

From time to time after that we would see a little excitement.  On the wagon ride we got some sounds and a smile made its way through here and there.  But what really sticks with me from yesterday was being at a special needs field day with kids from all over the area, all ages and a range of disabilities.  And seeing my little one as one of the most delayed in the group.

He wasn't running around and getting into things he wasn't supposed to.  He wasn't putting his AFO's  (leg braces) to the test.  He was wobbling with his walker on uneven ground.  He wasn't covered in stickiness from cotton candy or markers from the crafts area.

He was somewhat slumped in his pediatric wheelchair type stroller and seemed barely aware of what was going on.

It's not a shock to the system.  It's not a blow that you didn't see coming.

It's a reality that I have always been aware of, always known is there, am not afraid of but one that still requires tears to process.

It's part of life with Logan and it doesn't get easier.  It's just easier some days than others.  It comes and goes and it is what it is.  Period. 

The rest of yesterday was pretty good and it seemed that overall it helped him to get out, have his brain stimulated and he survived having no real nap all day. So that is what we will try and focus on.

Even if I didn't necessarily like every detail, he had a good day.

And it's not about me anyway, which is nice because it make life easier when I can remember that.

And then there's today.  It's as if God knew I needed a lift.  But only the way God can know.

Throughout the day He has dropped little blessings along my path that have made the sunshine brighter and the breeze more peaceful.

He arranged the perfect coffee-on-the-porch at my favorite spot - my sweet friend Sheila's house.

He scheduled the sweetest lunch with my big little boy...and it was pizza day to boot!

He sprinkled in the perfect conversation with Freddie's teachers.

He added a layer of kindness and smiles from the Cotswold Chick Fil A team at breakfast and the Anthropolgie staff who took my returns.

He topped it all off with a little Ben and Jerry's, because who doesn't need a little Ben and Jerry's now and then?

And the bonus...Logan is happy and having a pretty good day.

I can expect more and advocate for more for Logan from a medical standpoint, but I cannot ask for more from my life.

I read this the other day from a mom whose child also has Lennox-Gastaut and it is perfect and heartbreaking.  

It is our reality. It is Epilepsy.  

~~~~~~~~~~~~~

I see you.

Slumped suddenly where you sit or

Collapsed in the spot where a moment ago you stood

As you are attacked without warning.

I hear you.

Although you have no words,

I hear the pain and confusion in your cries.

I see the plea for help in your eyes.

I feel you.

I feel your body stiffen and tremble

As I pray for you

And wait with you

For this to stop.

I am here.

I hold you close

As this subsides

I sing a song to you

To make you feel safe again.

I see you.

As you sleep in your bed at night.

I watch for the rise and fall of your chest

And say a silent prayer of thanks.

I love you.

I tell you everything's gonna be alright.

But the truth is that

I just don't know.

Together we stand.

Together we hope.

Together we fight.

That we may someday find a cure.

~~~~~~~~~~~~~~~~

Life is filled with ups and downs, good and bad.  The fact remains that we are in control of much more than we think, because although we can't change the circumstances we can change us.  How we look at things.  How we react.  How we move forward.  It's a simple and age old concept, but it helps me to keep reminding myself.

Live. Love. Laugh.  Words to live by.