Little Wonders

"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.