Tuesday, November 22, 2011

do you ever just need a good cry?

 

 

Yeah.  Me too.

 

 

My heart has been so weary and heavy lately.

 

 

I’ve seen all these Thankful Lists floating around everywhere.  FaceBook.  Blogs.  Forums. 

 

 

And to be quite honest…I don’t read them.  In fact, I deliberately click away from them.

 

 

I’ve even randomly contemplated writing a Crab List alternative.

 

 

Because I’m tired and feeling sad.  I’ve been calling it the Post MMR Blues.  I held my breath and had Trevy vaccinated (not without biting the nurse’s head off when she asked if I wanted to just get him all caught up though).  Now I get to freak out on the inside for the next two weeks.

 

 

Of course, I’ve been feeling sappy for weeks now so blaming in on yesterday’s vaccination drama doesn’t really work.  And I know it’s a good thing to count your blessings.  I also know that I am blessed.  Very.  But knowing your blessed doesn’t anesthetize the pain of heartbreak.  I know too…that Trevy is a miracle in so many ways.  But sometimes even miracles aren’t without heartbreak.  Trevor is a heartbreaking miracle.  And even the parts of me that have (somewhat) healed still ache at times.  Phantom pains.  That sneak and squeeze sadness up when I least expect it.

 

 

I was remembering the other day how four years ago we spent Thanksgiving in the hospital.  During Trevy’s first round of ACTH.

 

 

The four years since that Thanksgiving have been such a roller coaster.  Of events.  And emotions.  And everything in between.

 

 

Most of the time now…I’m okay.  My puddle on the floor days are so rare any more that it’s always surprising when I feel the need to just cry my little heart out.  Tears that used to fall at the drop the hat…now slowly build up inside until one day the dam that I didn’t know was even there – breaks.  And I have a puddle day.

 

 

Most of the time…I really don’t notice how baby-like he still is.  I mean, of course I know how very dependent he is on me.  For everything.  He weighs 43 pounds now after all.  But most of the time…it’s okay.  So what if he needs my help to eat?  Brush his teeth?  Go potty?  Play safely?  Get dressed?   When out of nowhere exhaustion will hit.  And I have the urge to lock him in a room with a pile of his clothes and not go back in until he has learned how to get himself dressed.  Or by God…just to put his own pants on.  Or shirt.  Or socks.  Most of the time…it’s okay if I have to help him get dressed forever.  Most of the time…I remind myself there are others out there with deeper cares.  But sometimes…my heart is selfishly weary.  And exhaustion is oh so saturating.

 

 

Most of the time…I’m okay seeing a little seizure here – a little seizure there.  My heart accepted long ago that Trevy’s path will always be strewn with seizures.  And most of the time it’s okay.  I’ve learned how to survive and even feel blessed as a Seizure Mommy.  I’ve learned how to live with a broken heart.  But sometimes…it feels like more than I can bear.  Like the weight of worry I’m going to carry until we’re well past the two week strong MMR danger zone.  Or the unspeakable heartache I feel every time I think about Sophie.

 

 

image

 

 

How is it possible to love someone so deeply that you’ve only hugged once?  To feel so deeply that tears spring up every time you let your heart think about what this month holds for her.  And her family.  Sophie is scheduled for a second brain surgery the beginning of December with Dr. Rockstar because the first only worked for so long.  Not long enough. 

 

 

My heart just feels so heavy.  So bleh.  So in need of a puddle on the floor day.   

 

 

What a paradox.  To include things like brain surgery or at least it was just a little seizure in your blessing list.

 

 

Anyway…

 

 

I’ll probably be sappy like this for a while.  Until Sophie is safely on the Healing Side again.  And Trevy has made it through two weeks without any vaccination complications.

 

 

Unless of course, Trevy somehow miraculously learns how to dress himself and comes prancing down the stairs ready for school like a big boy.  I’d even be okay if everything was on backwards.  That would probably perk me up a little.  

 

 

:: smile ::

 

 

…danielle

8 comments:

Shannon said...

Praying...for you, for Trevy, for Sophie, for strength and healing and peace.

TherExtras said...

Your puddle of words flows right into my heart. Prayers for you, Trevy to learn to dress (extra inspired by my OTness) and for Sophie and her family.

Barbara

Kristy said...

We are just 5 months out from surgery and no seizures since. I keep holding my breathe when he looks tired or gets a cold waiting for the clusters to start. I feel such a connection to your emotions in this post. A heartbreaking miracle is absolutely right. Thank you for sharing so many intimint emotions. It is a blessing to those of us sharing the same path.

happy's mommy said...

Shannon...your speedy supportive comment warmed my heart yesterday. Thank you!

Barbara...I MISS YOU! And you know...if your OT-ness became obsessed with the idea of writing up a "how to teach your child with motor planning & physical weakness how to undress & dress themselves" lesson plan...I would totally buy it! You could even have a bonus edition that included "how to teach your child that he must take OFF clothes BEFORE jumping into the full tub" article! xo I hope all is well with you and yours!

Kristy...you are my soul-sister in this. I hope you feel the big Italian cyber squeeze!

...danielle

Andi S said...

We spent Emma's first Christmas in the hospital. It was when they told us she had IS. We all sat in the hospital room with her and watched cartoons with Matthew. Jon can't watch (or even see a commercial) Grandma Got Run Over by a Reindeer without remembering and getting a little teary. We watched it at least 3 times while we were there.

That sadness creeps up all the time, especially with baby hormones and waiting for Gwen excel where Emma doesn't.

happy's mommy said...

Andi...I just love you SO much! Some of the IS connections I've made over these past four years have come and gone...especially when our children's paths have veered in different directions. I wish it didn't make me sad. But even though I believe there are friends for various seasons...still...I miss some of them. But you're one of the sticky friends...and I'm so thankful for you! We can be all sappy together through the holidays... XOXO

...danielle

The Blatchford Family said...

Big hugs.

Most of the time I try to ignore the emotions of it all, and just get through each day. But while reading your post I started to tear up...for all the heartache and ups & downs we've all been through. It surprises me still how easily the tears can come.

Sophie's Story by Elaine said...

With every med change, with every growth spurt, with every vaccination...I am here holding my breath with you. It's not an easy decision...the decisions we have to make on behalf of our children...on a much too often basis.

I know how AMAZING our children are...how proud we are of them. They have come so far. But it is sometimes hard to be thankful when the looming cloud of seizures are constantly hanging over us. And to have to make a decision that one day, not that long ago, seemed so nonchalant in our lives. We took our babies to the pediatrician, marveled at how big they were getting, got their vaccination shot and went on our way. It is sometimes the littlest detail that can seem so overwhelming at times.

So, yes, we need a good cry. And I am SO THANKFUL that I have you to call when I need someone to just "get it". I am thankful that I have you in my life. I am thankful that, although brief, I got to meet you and your whole family in person. That Sophie has a best friend whose heart is as big as yours. And I'm looking forward to the day that you get to meet my whole family. LOVE YOU SO MUCH!!!