Saturday, June 16, 2012

and then I cried



My life is too busy for tears.



There was a time when every little thing had me in a puddle.  I deeply believe this was healthy.  Even if others may have thought it was depression.  Maybe it was that too.  All I know is that grief is an intricate piece of the healing process.  When your life explodes.



And even though at times it feels like the sad phase will never pass.  It does.  And one day I catch myself thinking that it’s been awhile.  Since I was a puddle.  Sure there have been misty moments.  But the puddles have ceased and desisted without so much as a wave good bye. 



A while turns into weeks.  Then months.  And so on.



I can feel the strength in my soul sometimes.  Sometimes it feels good.  To look over my shoulder and see what I can (by Grace) survive.  To look at today and know that I’m  not shattered and scattered anymore.  That somehow all the pieces have been glued back together.  Bit by bit.  And while certainly the crack lines have left their marks – they have not destroyed me.



And maybe I let myself take a cleansing breath and sigh it out.  Not quite with relief.  But maybe a close cousin.



Until I’m sitting on the side of the tub.  It’s potty time.  And he’s standing in front of me. Still sleepy headed from his nap and acting a little off.  Even though I try really hard to pretend I don’t notice the off-ness.  Because it could mean something.  And while I may not be a puddle any more, I’m still exhausted.  His new ABA therapist is leaning against the door jamb.  We have a small bathroom.  I’m feeling a smidge claustrophobic.



Against my will, I notice the twitch of his face out of the corner of my eye.



The Seizure Mommy in me automatically goes on high alert.  No more corners of eyes.  I’m tense and on edge.  Zoned in on his face.  His body.  His movements.  Speech.  Looking for other “markers” while hoping like crazy it’s my over active imagination.  Residual worry wart.  From when seizures lived with us daily.









He grins at me.  But his eyes are vacant.  I hate vacant eyes.









He’s acting space cadet-y.



   And then his arms fly up in tandem with his face twitch. 



I gasp.






It’s not scientific.  Not one bit.  It’s my gut response.  I’ve learned to trust my gut.  When I gasp – I don’t need an EEG to tell me what I’m seeing.






Seizures make me cuss.



Sorry, Mom.  Sorry, Bibi.



But they do.



I can’t help it.  I cuss.  I pull him close.  And then I weep.



Right there.  On the side of the tub.  His pants are around his ankles because we were trying to make pee pee through it all.  The therapist is still there.  In the door way.  Probably feeling more awkward than I know.  And I try to reach deep and pull up some of that strength I’ve grown over these past five years.  To look like a mom who has lived through watching her child have uncountable seizures and brain surgeries. But in this moment, I’m weak.  I want to vomit.  It’s too much.  We’ve been through too much.  The rational side of me says we never thought he’d be seizure free.  Which is true.  But we hoped.  We’ve seen seizures post surgery.  This isn’t our first seizure.  It’s not even the first cluster of seizures I’ve seen.  But it’s the first time more than his face was involved.  It’s the first time that I can’t try and deny how much it resembled the monster we thought we cut out.



And it shakes me.  Fear has a cold grip.  And it wrapped itself firmly around my heart and soul so that the only thing I could do was weep.  And hold him close.  And try really really hard not to think about all the “what we could lose ” or “what it means”.  To relax into what is today.  To remind myself that I have Faith.  That I Believe.  That His plans are not to harm me…or him.  That his Life is unfolding like it should.



My soul is at war.  Because it is painful.  So painful.  Too painful for words.



I don’t know what it is about seizures.  But big or small they shake me.  To my guts.



It took awhile to compose myself.



Eventually, I had to let him go.  He was fine.  Even if I wasn’t.  The cluster only lasted a few minutes.  His arm was only involved that one time.  The rest just looked like facial tics.  Most people would never even notice.  It’s not even that it was all that scary.  He was fine.  I gave him a snack.  He went to work on table top activities. 



Then I went and emailed his neurologist. 



I haven’t had dry eyes since.






ps.  I always hesitate spilling my guts anymore.  For layers of reasons which include not wanting to scare other parents who are contemplating surgical epilepsy intervention.  Surgery was the right choice for Trevor and has been a miracle for him.  Which is also, why I hesitate sharing the less happy stuff.  I have SO much to be thankful for.  SO much to celebrate.  Because in spite of on-going seizures…he is doing extraordinary.  And I never want to harm the hearts of parents that are dealing with more.  But I committed a long time ago to sharing our story authentically.  And even though there was a part of me that didn’t want to publish this post…another part of me needed to.   


Beth said...

You writing is beautiful, and left me in tears. I'm so sorry that this hurts you so deeply. But hope, hope is always needed. Never ever give up. I know you and Trevor can get through anything.

happy's mommy said...

Thank you, Beth.



Nicole said...

I'm so sorry. Following your blog about Trevy all this time has really brought a deep love for him, for a little boy we've never met. There are really no words, but just know we will be in prayer for you!

Anonymous said...

Being truthful is extremely important. Other moms going through ongoing difficult times will feel less alone. A path will have been paved for them in some ways. So, please don't feel badly about being authentic :)

blogzilly said...

This just sucks. You almost hope he was imitating something and you are being paranoid...that thought races through my mind a lot whenever I see anything odd.

But you are right, you are The Mom and you know your boy better than anyone else in the room. This is monstrously difficult. We are always running in a marathon, and we think we round the corner and see a finish line, and then realize there isn't one.

We can only take what we can from those folks running alongside or standing along the way offering whatever small pieces of nourishment can be handed to us. And keep going. That's what you do.

I hope this is something that doesn't derail the progress you've made. Isn't that all that can be said? It's here, can't deny that, so what next is always what is on my mind.

Your PS was insightful, not just about you but about all of us Surgery Kids. I think it is super important to paint a clear picture as a community of bloggers as to what we really got when we signed on. In fact, it is our obligation. You do it well, and so no need to apologize. This allows parents who find themselves in our shoes with info maybe we only had a part of. Not that we would not do it again. We ALL would. But we would view it differently, and our expectations would be different.

So we write about it so that perhaps others might benefit from the experience. Sorry for the blogjack, but I think you have nothing at all to apologize for.

Hoping for the best...

happy's mommy said...

Thanks, everyone.

I always appreciate cyber encouragement. As cheesy as it sounds. :)


ps. Ken, you're always allowed to blogjack.

MJStump said...

Just as therapeutic as the weeping can be, so is the blogging...the sharing and just pouring out your feelings (hopes, dreams, fears and so much more).

I smiled with your post in the beginning, and began to melt along with you as it continued. Love you guys for being so "real" about everything and sharing so much of you.

Krissy said...

So thankful you chose to share this!

Anonymous said...

Be strong. you WILL pass this phase with the support of your loving family. Will keep trevy in our thoughts...

teamaidan said...

You have to keep telling it like it is, not just so we all feel less alone but because it's so educational. It was your blog (and video of Trevy) that first made me really consider the Epilepsy diagnosis. Even though Aidan has a different kind of Epilepsy, I never knew seizures could show up in so many ways.
Keep writing (and crying and cussing)!

Mrs.M said...

Oh Danielle....

Always be authentic....regardless of who is reading.....and as you know all of us neurosurge families will try anything to heal our babes, regardless of another's don't give others another thought on that aspect, all these kiddos are individual....and we all need truth in this quest for healing, peace and hope. So, thank you for being brave enough to share.
Hugs to you and your family. Many, many, hugs.

The Scott Family said...

I wish I could add more than what everyone else has said, but their comments are spot on. Your blog is typically optimistic, but honesty is also necessary for those parents too. Leaning on God is the best thing to do! Prayers for you and Trevy.