Tuesday, June 23, 2009

"In the dark dreary nights, when the storm is at its most fierce, the lighthouse burns bright so the sailors can find their way home again. In life the same light burns. This light is fueled with love, faith, and hope. And through lifes most fierce storms these three burn their brightest so we also can find our way home again."
~ Unknown.

This binder has made the rounds over the last two years.Originally,it's use was intended to be short term.Miss Zoey had other ideas.I vividly remember having Jessica make the little cover insert.We were a week or so away from being discharged from the NICU.There was such an overwhelming amount of material to be taking home.Infant CPR stuff,G-tube feeding stuff,hem-onc stuff,cardiology stuff,ALL her medication stuff .. just stuff.It became,hope for a future in the form of a blue binder.When we arrived home,life was seriously complicated with this medically fragile child.Our number one priority was keeping her alive for heart surgery.No over dramatization there.Ask any of the immediate family.It was our initiation to the term joint effort,where working as a team,was the only way we would,she would,get through this time.Someone was at Zoey's cribside at ALL times.No exception.Time passed.Surgery miraculously came and went and the blue binder began gathering dust.When she was healed enough and ready to begin Early Start,I dusted of the blue binder,tossed all the "early day" stuff and transitioned the beloved binder.It became hope in a new beginning,in the form of a blue binder.I eagerly placed all the info passed on to me by her therapists.Divided into categories:OT,PT,Feeding Therapy. Buying up all the latest and the greatest gizmo's and gadgets and toys.Zoey began to blossom and thrive and as quickly as this new norm began, it was devastatingly cut short:Infantile Spasms made their ugly appearance.And that blue binder full of hope,instantaneously disappeared.The next several months were filled with a journey that I really didn't care to document.No paper trail necessary.My reminder came daily in the form of seizures,non FDA approved medication,steroids from hell and finally, a miracle.Each step chronicled and etched in my mind,forever.And as quickly as it all began,time did that amazing,trippy thing.It passed and the sad and difficult days went along with it.Yet another new norm began to set in and the blue binder was,by that time,long forgotten.Then one horrific October day last year,I begrudgingly had to resurrect that damn blue binder.More info and more paperwork then I could wrap my head around, flew at us at lightning speed.Round after round that binder came with Miss Zoey and I.Round after round I filled it with the daily labs drawn from my precious babies body.Each lab draw represented possibility and progress.Each draw represented our ticket in or conversely, our ticket out of CHLA.Mark would ask,as the binder became chocked to over flowing capacity,"Can't we take some of these old labs out"?Not one, was always my reply.October the 29th,2008 is the first lab draw and June the 2nd,2009, is the last.120 lab sheets,representing 108 days inpatient.Staggering really.And today, as I retrieved that still full binder, from my closet shelf,I was struck.I was struck by the magnitude of the journey of this magical child.As I leafed through this binder,documenting days for our service coordinator for our IFSP meeting,I was barely able to push back that gigantic lump in my throat.I am not sure when I will be able to remove the pages from this binder.What exactly will I do with the pages?Toss them?Burn them?Or perhaps it stays just as I found it today.This terrifying,unfair,sorrowful,joy filled,God guided,blessed time,infinitely and forever,remaining,as it is:an inanimate representation of eternal hope.Hope in the form of a blue binder.

*We had our IFSP meeting,Individualized Family Service Plan,today.We have utilized Early start very little over the last two years.With only 8 months left before we are cut loose,we have come up with the best plan we can to maximize this time.PT:Once a week.Vision:twice a week.Feeding:Once a week.And hopefully Speech:Once a week.If the speech evaluation deems Zoey isn't ready cognitively for that service, then we can swap in an extra PT session.Our service coordinator is great and is truly looking out for Zoey and what will best serve her needs and meet the goals we have get forth.We also have an appointment in a few weeks at the Center for the Partially Sighted.Some may or may not know, that due to Zoey's stroke she has visual field loss along with a few other "glitches".Our vision therapist is outstanding and we are in such capable and loving hands with her.Glasses are more than likely in the cards for Zoey in the not so distant future.We are also fighting the natural tendency for Down syndrome children's eyes to wander inward due to low muscle tone.Trust me,Zoey's eyes are REALLY starting to float.So we have lots of great,HOPEFUL stuff,happening with our little fighter.All of which I am more than ready to jump into.

14 comments:

Anonymous said...

Heather - How about another, Binder #2 for action taken after chemo journey. 15 years from now, you will be reminded of the journey you were on any particular date.
( The other day I posted Jake as Zake, sorry Jake being sleep deprived does slow down the brain a tad.

Have a very good day. We are having sunshine & hot weather here in the east these remainding days of this week.

(Mark.. Kenny G will be at Jazz Festival at OCC Saturday - one of my favorite performers..free concert for all you out in blog land. reduced to 2 day affair this year. Awesome event. (8 national musicians 20 performances in all) and FREE! Bring a lawnchair, blanket, etc

Take care

Bluebelle

Mama Mason-Mann said...

Heather, you are absolutely one of the most gifted writers I've ever read. This post is absolute poetry. I love to ready your posts! Thank you for sharing!

Lacey said...

I just noticed that you cut the boys hair. Carter will just die. He loves his long hair. But his big blue eyes and long eyelashes get him called a girl a lot. So when he see's another boy with long hair he loves it.
How great will it be to be doing "normal" stuff. OT, PT, all that good stuff. She will do great.
Oh and Mondo told me the other day that Jake was his best friend far away,so cute, even though they only met once for a short time.
Love you guys.

Bea Braun said...

Heather you really should consider writing a book. Your words are amazing and you have an incredible ability to share your story. It would be a wonderful tribute to Zoey! Can't wait to hear all about Zoey's developmental leaps and bounds. She's going to look adorable in glasses!

Michelle said...

Who would have thought a object such as a blue binder would hold so many stories, emotions, secrets, prayers and faith. That is her story, not the bad and scarry stuff, but the courage it holds, the triumphs the reminder that anything is possible and we are NEVER to give up, never to give into the weary, dark days. That binder reminds us all that no matter what lay infront of us or is trailing behind us, life is beautiful!

Googsmom said...

{{{{{{Zoey}}}}}}

Jeana said...

What a wonderful post. So my very electronically talented husband figured out how to make a button, using zoey's as his guide. So its up on her site, feel free to add it to your page. What a great idea you gave us!

sturpin said...

I have my binder too. My doctors are always surprised, but appreciate it.

Home therapies...what a wonderful place to be at. Hoping everything stays good! :)

The VW's said...

What a precious picture of Miss Zoey!!!

I bet Zoey will soar through all this therapy and be flying really soon!

I'm impressed with your folder...very organized! I should have kept a lot more of Gavin's info, but I wasn't as smart as you!

stephanie said...

It's part of who Zoey is today. It's a huge part of who you have become. I know it's not a good memory, but don't get rid of it. I think the first comment has the best suggestion, it's time for volume #2.
Anyway, when you write your book, which will be a best seller, you might need the blue binder as a reference, Love and prayers to all.

Anonymous said...

See Heather - I'm not the only one thinking "BOOK"!!! After you finish your "RUN" in October... you will need some very quiet time (well deserved) for writing that book - well there you are. Actually I think the book has already been written - you just need to get it published. It's a very beautiful, very inspirational story. The pics are great. Zoey is looking so much like a "big girl" (toddler) now. Still saying prayers from Otisco Lake - Robyn

Anonymous said...

Heather - sorry to use this blog for business, but can you ship me 10 bracelets (this is for starters)! everyone wants one or more!!
I will issue you one check. Just let me know address, name to make check out etc.

Bluebelle

scrappy quilter said...

Our guy is 19 and I still have his binder. It's a reminder of where he was and how far he has come. You'll look back on this and see miracle after miracle that has happened in Zoey's life. Never get rid of it, it's a treasure just like your swee Zoey is.

I agree with everyone else, your writing is incredible.

Anonymous said...

In full agreement. Hide Volume One in the bottom of the box with an old used baby blanket full of memories. A special outfit that doesn't fit anymore. Maybe a hard copy of your blog, or highlights thereof, from the corresponding period. Whatever is special. Make the box pretty, wrapped in cloth like a present. Then put it in the back of your closet, forget it and move forward with Volume Two. And good things. Give it to Caitlan to store.

I am in my 50's, and doing OK. I was a very, very sick infant/toddler. I am grateful my parents are still alive and well at almost 90. But all I have from that period of my life is a one page letter from a pediatrician and stories of fear and sadness. Stories of long days and nights seemingly lasting forever at the hospital. I think you understand that aspect. I also have a baby blanket and some oh so pathetic pictures. Want to know how much I cheriswh that blanket, preserved with so much love?

Your blue book, with dried sweat, tears and all, are a part of your and Zooy's legacy. Don't dwell on it, just know its there. We all know your happiness in the close of Volume One and the love and embracing of moving on.

I hope you never ever need to call on that blue book. But you will have it. A reminder of how far you have come. Life rarely goes on without a hurdle or two. I've had a couple more in my half decade. I take them more lightly than most. I hope if you and Zooy have any, they are of the comparable size of stepping up on a curb, unnoticeable, because the hurdles you have already overcome would humble the best Olympic athletes.

I would be honored to do the cover to Volume Two. I am unable to offer much more than prayers and a cover.

CB