Friday, June 19, 2009
lucky: having or marked by good luck; fortunate
"Some luck lies in not getting
what you thought you wanted
but getting what you have,
which once you have got it
you may be smart enough to see
it is what you would have wanted
had you known....
~ Garrison Keillor
I do consider myself lucky.I consider my life extremely blessed and lucky.I look upon the twists and turns of the last 2 years as times of unspeakable pain and equally, as times of immeasurable joys.I wake up each and everyday and know full well, that the mere fact I am waking up each and everyday, is indeed lucky.I do not have to look very far to receive these sometimes subtle nudges because quite honestly,most of the time, these reminders often come so forcibly, that the wind is almost literally knocked out of me.Tonight it came in the form of an update from Lacey,mom to our special little boyfriend Jax.This little guy fights tooth and nail for every breathe.Every day.From there I can send you to Pablo who is in a fight for his life at the tender age of almost six ... is birthday is on Sunday.Pop on over to darling Arabella and see her sweet face and I defy you to hug your 7 month old a bit tighter and not call yourself lucky.Then there is Ashlyn,a little love who happens to have Down syndrome,fought leukemia once and now is traveling that road again .... with a DIFFERENT type of leukemia.Little Gavin is a tiny but mighty fighter who battles daily against his very own body and his family puts one foot in front of another,looks to God for guidance and walks on.Click on Gwendolyn,spend time on her site,call up her archives and read about SMA and then sign the petition.Google Infantile Spasms and then visit Reagan and think about the upwards of 1000 and I didn't accidentally add zeros,that would be upwards of 1000 seizures that riddle her 2 year old body everyday.Stop by and perhaps offer your prayers to a young girl.A brand new mom.Jeana left me the most beautiful comment a few months back,referencing our quote at the top of Zoey's site and told me on that day "I was her solid thing to stand on".Send her hope for her 1 lb 11 oz little Kaely who happens to also have Down syndrome and AV Canal complete.I could go on and on.My blogroll is filled with families and children wading through one crisis or another.Some of these children appear from the outside, to be flying through life and it's milestones,but a certain few harbor within them,medical issues and impending obstacles,waiting for an opportune time to show their faces.Others fight everyday,every moment,just to be here with families who would move mountains to keep them here with them.I'll stop now.You probably get my drift.I am not intending to minimize the trials and troubles in anyones life.I am not asking for anyone to subscribe to my way of feeling or thinking.I am asking that we all pause for one moment today,look left or right and please for this one day,consider yourselves blessed and lucky.
*We are back on the quest for some type of oral feeding with Miss Z.Much to her dismay.Zoey use to be a champion eater.I know I will be repeated myself on this one but this child was g-tube fed for the first 6 months of her life,20 hours a day and THEN began nursing after heart surgery.Unheard of really.Especially with a child with a serious gag reflex and a tongue that rivals no other.By 9 months of age she powered down 2 jars of baby food and by the time we hit seizures at 11 months,it all went down the toilet.Actually she nursed until last August but food ... no go.Topamaz suppresses the appetite,big time.Dulls the senses,big time.Then Chemo and I doubt that needs explanation.So we are back to ground zero.We begin with what they call "crumbing" and go from there.Zoey was none to happy yesterday when we began but by today,she is at least keeping the crumbs in her mouth.I am doing it about 5 times a day and with work and dedication,she will hopefully reacquire a bit of a desire for solid food.Slow and steady we go once again.