Saturday, January 17, 2009
A reminder awaiting me in my Inbox ...
The other night before heading to bed,I checked my email.There,a new message.Subject:Infantile Spasms.An email from a frantic mom, seeking support,for her son who had just been diagnosed with Infantile Spasms.In that instant,as I read her email,I was immediately taken back to this time last year.Well,almost this time.February the 5th to be exact.The day Zoey had her first cluster of seizures.A day that changed our life and most especially Zoey's life, forever.I composed an email on the spot.Shot it off to her and sat back.I hoped my words were enough.I hoped my advice helped.Mostly I hoped that whatever direction she and her son were heading,I hoped they found his miracle.I have to say,that from February the 5th, until Zoey found her miracle in the drug Topamax,those days were the most difficult and the darkest.Yes,even darker than the fight we wage now against leukemia.It would be difficult for me to explain the exact reason I say that and probably even more difficult for you to understand.That is unless you are a parent of a child who has suffered or still suffers from this catastrophic form of epilepsy.Infantile Spasms is a thief who comes quietly and without warning.It silently robs your child of milestones they have reached and most especially those they have yet to make.Infantile Spasms is a rare disorder and it is tremendously difficult to control and it is just,for lack of another suitable word,just plain ugly.For Zoey,I can say,without a doubt in my mind, that the delays you see in her right now are not due soley to the fact that she was born with Down syndrome,or that she suffered a stroke in utero.Or still yet,that she spent 6 months of her life,flat on her back,g-tube fed 20 hours a day,awaiting heart surgery, as far from adequate amounts of oxygenated blood coursed through her tiny body.No,I blame Infantile spasms,as does her neurologist,Dr.Donald Shields.Infantile Spasms is an insidious disorder and the reminder that came to me the other evening was actually not what you might think.I did not dwell in what was or what could have been.The email did not elicit immediate bitterness and resentment.Instead I was filled with such gratitude that Zoey has found her way out of that darkness.Out of the haze and fog that encased her for all of those months.I will never ,ever forget that dark time we passed through and I honestly can say that the memories of the long,heart wrenching days of failed medication and escalating seizures is certainly hard to erase from my mind.Pictures I look back at of that time,are adequate reminders.This blog is a reminder as well.I started this blog after her seizures began and it was a lifeline.It continues to be one.I have met the most amazing children and families.Most of which will forever be part of our lives in some way or another.One amazing little child is Sweet Sophie and her mom Elaine.Right before we were released after Round 2,a package arrived for Zoey at the hospital.In it,this darling onesie and pair of babylegs.We can't thank Sophie and her family enough for their love and support and ongoing prayers.We feel blessed that through the darkness of Infantile Spasms we found the light of their Sweet Sophie.We have to always remain hopeful,always.We must always see the light that shines before us.And yes,sometimes that light is that of an oncoming train.But we still continue to search.I thank God daily for the beacon of hope I find in these children.That even during the darkest, most senseless moments,the hope I find in their journeys,lights my way.
"From within or from behind, a light shines through us upon things, and makes us aware that we are nothing, but the light is all." ~Ralph Waldo Emerson