Thursday, November 25, 2010

how it's Supposed to be

Three Thanksgivings ago we were admitted into our local Children's Hospital.  Trevy would be spending his very first Turkey Day inpatient.  So little.  Too little.  Our beautiful baby.  We were still reeling from the diagnosis.  Unpacking our luggage.  Because as Life would unfold...we wouldn't be catching that plane back to Tanzania in two weeks after all.  We were emotionally exhausted on all sides.  One being from battling our insurance company (I must always inject: AIG) for a week - we had finally won the $125,000 battle.  Preparations were made for Trevor to start his first course of Acthar (or ACTH) the day after.  It's a bitter sweet memory.  Bitter...because would to God we had stayed ignorant of this thing called Infantile Spasms.  Sweet because Bibi and Babu had canceled their own return to Africa flight.  And were instead surrounding us with love and support.  Along with Grams & PopPop and a whole host of prayer warriors.  Also we remember enjoying the turkey feast at the local Ronald McDonald house.  If you must spend a holiday in the hospital...it softens the blow to have good comfort food eats.     


Two Thanksgivings ago found us busy.  Busy finishing up the financing for our little cape cod.  The house we never thought we'd own.  Because we thought we'd be spending our lives bronzing in the African sun.  Until Infantile Spasms swallowed our son.  And we missed that  return to Tanzania flight.  By now British Air had even generously reimbursed us the expense.  The anti-AIG.  The anti-Questor.  We were also busy weaning Zonisamide.  Trevy had relapsed several months earlier.  His spasms had not responded to either a second round of Acthar nor Zonisamide.  And we were now busy swallowing our fear of vision loss and a couple weeks into Vigabatrin.  Which I would give much too much time before calling a failure as well.  


One Thanksgiving ago we were just two months removed.  Ha ha.  Tickles my funny bone that that should be the sentence flitting through my mind.  We were just a little over two months removed from Trevy having half his brain removed.  He was essentially seizure free and daily regaining his strength.  He had wasted to almost nothing during that ordeal.  I look back at those pictures and think how scrawny and sickly he looks.  But how could we complain?  Our son was given such a miracle chance.  Last Thanksgiving is fuzzy.  I can't remember much of the details at all.  I only remember feeling exhausted.  So exhausted.  Saturatingly exhausted.  Which has essentially been my defining attribute since his surgery.   


How different this Thanksgiving has been.  We actually celebrated yesterday.  I roasted a turkey.  Made real mashed 'tatoes.  Green bean casserole with plenty of french fried onions on top.  Cheated with Stove Top.  Garnished with whole berry cranberry sauce and olives of both the black and green persuasion.  Bristel begged for our wedding China.  Which looked cute next to the multicolored Ikea plastic cups.  We're making memories. 


::smile:: 


Two outta three of Jonathan's siblings came to give thanks with us.  We laughed.  We cried.  We hugged.  They monopoly-ed.  Toby creamed.  We snapped gobs of pictures.  We grew nostalgic.  We played.  We enjoyed.  We gave thanks.  We replaced last year's memory's with this's.  The last three years with today.   


And it struck me this afternoon.  After we'd dropped Uncle B & Aunt M at their going home destinations.  We were planes, trains and automobiles today.  But now we were surrounded by Christmas decor.  Because I'd successfully convinced Jonathan that the tree needed to go up today.  Trevy was napping.  Tobes and Bri fighting over who got to place the star on top.  Daddy did.  To prevent a brawl.  And I stood there feeling wrapped up in a sense of...peace.  Drama free-ness.  Like...this is how it's supposed to be.  Not how I wished it was.  Or how I'd ever imagined it would be.  But how it is Supposed to be. My heart was deeply thankful for the blanket of normalcy.  Trevy's life is much different than we ever could have imagined three Thanksgivings ago.  In fact, I wrote a very poignant post way back when.  Trevy's 93 hours did run out.  Although we enjoyed more than 93.  But eventually the clock ran out and hearts shattered.  Again.  But slowly we're working our way towards healing.  Acceptance.  Learning how to choose grace and unconditional love along the way.  Learning to  give thanks in how it's Supposed to be.  Rather than dwelling on how we wish it was...   


Have we fully come to terms with how our life has been altered from our newly wed dreams?  Of course not.  We're not that naive.  We comprehend that we're still in the very early stages of what being Trevy's parents means.  I'm  attempting to wean myself from imagining what his future even looks like.  But what I can say...is that this Thanksgiving has been very sweet and beautiful.  And I'm looking forward to building new memories through this holiday season and beyond...




Starting today.  One Thanksgiving at a time.   

10 comments:

blogzilly said...

I still haven't figured out what our life is supoosed to be. Maybe I never will. There is no template. Maybe we just write our own and leave it at that.

Maybe that's why we write blogs and others do not, we have to be the architects, the designers, the authors of our stories, but within and without.

Happy T-Day.

Love you guys.

Andi S said...

Made me smile! We are so happy for you, Trevy, and the rest of your family.

Our first 2 Christmas holidays were marked with hospital stays, the first with incredibly horrible news, even beyond IS horrible. Our 3rd Christmas was quiet, but only because we had woken up the day after Thanksgiving to find that Emma was paralyzed on the right side of her body from a big seizure in the middle of the night. A seizure that robbed her of a great many things, some things we are just now getting back. Here's to hoping that this year's holiday season is quiet. :)

happy's mommy said...

Kenly...I think you and I see Life through very different filters. But I do love ya you cussing fool! And your sweet little family... I hope this year you guys make more sweet memories...

Andi...(((((((hugs))))))) that just made me want to hug you. Is it me...or does it seem like sad things target special times? Anyway...I hope sad leaves you guys alone this holiday. And you enjoy a nice,quiet,peaceful couple weeks...and beyond. Love you too!

...danielle

Anonymous said...

Happy Thanksgiving to you all, lovely post :)

Our Christmases will always hold bittersweet memories, sweet for the seizure freedom, bitter for spending one in hosp with Henry getting part if his brain removed.

But...this Christmas is already looking so different to last year's it's amazing :)

kt x

TherExtras said...

My heart is a little fuller for having read this. I'm thankful for you, danielle, and your blog!
Barbara

Melody said...

My first time here. Thank you is all I can think to say.

singedwingangel said...

Found your blog through a tweet and how blessed I am to have done so.. Praying you make so many memories that wipe out those first ones... He is already a miracle every day, God brought you to it so he could bring ya'll through it. And through it He is.. and you have learned the things to be truly thankful for..

Marie said...

Beautifully written! I'm glad you've had such happy memories.

Abbe said...

what a sweet, sweet post. thank you for sharing. makes me feel so thankful right along with you. and please post lots of pics.... would love to see recent shots of those 3 out of 4 sibs! and the munchkins too! :)

Holli said...

Peace. Normalcy. It's exactly what we've all dreamed about. I'm so glad you're getting there. As someone who's been on the frontlines of battle too, I definitely know how huge that is. It gives me a bit of hope too. ;)

(((hugs)))