Thursday, July 30, 2009
"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before."~James Buckham
One of the many blessings,yes there were blessings amongst the deep pain and sorrow, that came from being on the "long term residency" plan of the 4th floor,was that Miss Zoey and I were able to spend some amazing one on one time together.Now,trust,me I wish that the circumstances were different but that time together was just that,amazing.Since we have been home there has been little or no time for her and I to just snuggle up.I miss that.In a weird way.Tonight, a rare occurrence happened around here.The house,the entire house, was ... silent.Not empty silent,just silent.Jess was upstairs in her room relaxing after a long school day.Taylor was in bed with a nasty migraine.The boys were upstairs carrying on their summer tradition of watching a movie in their "theater" bedroom/bunk bed.Tonight's viewing choice,"Spy Kid's 3-D".Joe will be none too happy in the morning, as he only made it about a 1/4 of the way through.And Mark ... working.New show=crazy hours.That left Zoey and I.She was pretty wiped out by 8:15 and was so content to just hang with me on the couch.As tired as she was,she still was full of personality.Such sweet noises and darling looks and the most sincere and unsolicited hugs and kisses.At one point,she was just lying on her back,twirling her hair and sucking that upper lip the way she has always done since she was a fragile newborn.It is her way of letting us know she is exhausted.And I,I just stared at her.As I did, I glanced up at the sculpture you see in this photo and in one split second all these emotions came flooding over me.That sculpture was given to me the day after Zoey was born.It came from the Cayman Islands and was a gift from a very dear friend.That sculpture represents so much more then a bond between a mother and child.To me it represents the indomitable spirit of this little girl.One who fought to be here from pre-birth and to this very day has never,ever stopped fighting.I looked at her tonight as she so peacefully tried to lull herself to sleep.I looked at her little curled up left hand and her little left eye that ever so subtly floats upward.Both are reminders of the devastating stroke she suffered in-utero.I listened to her gentle little voice and was reminded of the fragile baby that was so medically compromised that we never,not ever,heard a peep from her,not a sound,not a cry,until her heart was repaired at 5 1/2 months old.I watched her smile so sweetly at me and again thought of the smile I yearned to catch a glimpse of in those early months.People always spoke of smiling Down syndrome children,I saw them in all the books I poured over but again, I had to wait until her heart was able to tell her body that it was indeed alright to expend such a simple gesture without taxing an already over taxed body.That same smile she flashed at me tonight, gave way to the sickening and heartbreaking Infantile Spams months where there was no longer a smile to be found.Anywhere.It had been lost in a dark and ugly haze of a tiny brain living in constant chaos.Tonight,as Zoey twirled her long hair I was reminded of the hair,that by all accounts should be long gone from the nasty cocktail of chemotherapy drugs but tonight as I stroked that auburn hair I was reminded of the stubborn and determined child who said,no way,you took my hair once,I worked hard to get it back,I'm keeping it.In our very brief and uninterrupted half hour together,a wide range of emotions and memories were replayed in my over worked and seriously over tired mind but each one gave way to not bitterness or sadness but rather disbelief in the spirit of this little soul who has defied all logic and in some cases,medical explanation.By 9 o'clock I headed upstairs with the tuckered out fighter.I need to do what I did tonight ever so often.These reminders will lend hope to the uncertain future that lies before us as well as serve as fuel for the journey.Spirited,courageous,feisty fuel.
Love this little set of pictures.Well, except for the fact that she looks super washed out.I played around with the color and couldn't figure how to get it back.She isn't that pale although I think she is nowhere near the energy level she should be at.I have no idea how long to expect her to drag before she feels more energetic.I want her spunky and I don't think she feels very spunky on some days.One picture is of Zoey pretending to put a phone up to her ear.She just started doing that every once in awhile if prompted.I lover her disgusted look too ... we get that alot!
If you ordered bracelets,first,thank you and second,I am mailing them out tomorrow.Thank you also for all your well wishes on my complaining jaunt.I feel a bit better today and may be finding my out of the worst of this latest episode.Not a fun thing to function with at all.