Tuesday, September 9, 2008
"Joy lies in the fight,in the attempt,in the suffering involved,not in the victory itself."Mahatma Gandhi
When I take time to reflect on the happenings of the last eight months I am forced to spend time in the company of thoughts I would much rather push forcefully back down to the cavernous recesses of my often,selective memory.However, if I do not revisit some of the ugliness and trust me,ugliness is more than appropriate wording,if I do not revisit those moments from time to time I would in turn be unable to speak of the equally and polar opposite place of beauty we find ourselves in today.Most,I would venture to say,would have only needed the diagnosis of Down syndrome to set their pulse racing.I guess a few extra something,somethings like a major heart defect,a rare form of Leukemia and a intrauterine stroke was in order for us.Pulses definitely racing then folks. We,or rather actually Zoey,hit them all, hard.Showed them who was in charge and moved forward.We all moved right along with her.Following her determined and courageous lead. 8 months ago when the diagnosis of Infantile Spasms came,that was a whole new ball game. Yesterday when we saw Zoey's neurologist at UCLA,that ball game was in replay mode.Just the discussion alone was cause for me to be reminded just exactly why I really,really hate baseball.Dr. Shields is an incredible doctor.An incredible man. He entered our exam room,headed right to Zoey and stroked her little body and gently spoke to her first. Not me.After a quick once over we got down to business. Seizure business. The word rolls slightly easier off my tongue now a days because the truth of the matter is,as Dr. Shields pointed out,seizures are going to be part of our life,Zoey's life,like it or not.But and it's a huge but,the seizures she is likely to encounter should be able to be controlled far more aptly then before.He could not have been more pleased at the results we have seen using Topamax. Zoey is on a very low dose and there is quite a bit of wiggle room to move up if need be. We talked about surgery. I mentioned again to him how blessed we felt to have surgery,a hemispherectomy,as an option. He called it "back up".Of course our wish,our hope is to never have to utilize it,ever. But it is there. And as I have said countless times before,Zoey is one of the lucky ones.Many,many children do not have options.I wish they all did.I could see in his face the joy at seeing Zoey lifted out of the fog of Infantile Spasms.Seeing her wave at him.At his assistant.That was success to him.That means success for Zoey.We spoke of the likely hood of break through seizures due to future weight gain and thus meaning an increase to her medication.Easy enough fix. We talked about the likely hood of seizures in her future.All of which he truly and expertly agrees, should be manageable.I trust him.Explicitly.None of that scares me. None of that diminishes my overwhelming feeling that my child is indeed so very lucky.We visited a few more minutes.He handed us a new prescription and we were off.Return visit:6 months.How great is that?After 8 months of too many doctors visits to count,too many EEG's to count,2 hospital admissions,2 front line drug failures and now ....no neurologist for 6 months.We have emerged.Zoey has emerged from the other side of Infantile Spasms.Unless your child has journeyed that road, you could not possibly know what that means. Nor would I want you to.As we left our room and reentered the waiting room I glanced around the very full space.I looked at the faces of so many precious children. I looked at the faces of parents,grandparents and caregivers.Faces filled with fear,uncertainty and exhaustion. All the stories slightly different but joined in the common bond of the love of a child.My question,the same as when I visit the oncology/hematology floor or cardiology or what ever other "ology" floor I have found myself visiting over the last 18 months:Why?Can't they all be lucky?Couldn't they all have been spared this journey?As I left and said goodbye to a few families I had briefly spoken to,I left feeling somewhat guilty.My child was,God willing, not coming back for 6 months. Some of them are there weekly and in between, their journeys are riddled with unspeakable moments.But within that room I also saw joy. I saw smiles.I saw hope.One Grandmother I spoke with looked at Zoey and I and said "You are so lucky." My reply."I know I am."I am the luckiest mother in the world. Luck,rather God,placed this magical child in my life and I have been entrusted to protect and love her even and most especially during the difficult moments. I am asked,rather I am obligated,to look at my life,her life as nothing other then blessed and incredibly lucky.Infantile Spasms or any of the other diagnosis's will not and have not defined Zoey's life.They are just bits of the story.I have to believe her story,the reason she has over come such seemingly insurmountable odds is because she has so much more of her story to tell. We need to make sure we are listening.Music to my ears Zoey Grace.Sweet and sometimes sorrowful, but ever constant and most assuredly joyful.