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.


About all of this said...

Wow, Heather, I am very verry happy for you and Zoey. Just from reading your words I can feel a little how all "that" falls off, all that sorrow or fear of the not-knowing-what-the-doctor-is-going-to-say. The fear, that something could not be ok after been hit by so many things that your sweet baby never should have been hit by. Congrats, my dear, take a deep breath. You all will make your way! Slow an steady ;-)

About all of this said...

Ah, the foto. May I say Zoey is just sooooooo gorgeous.

Molli Salzman said...

Zoey and my son Charlie were both diagnosed with IS. It is so hard. I am so happy she is doing so well. You can just see that sparkle in her eyes through her pictures.


Pam said...

Although I don't know what it feels like to go through the infantile spasms, and the world of seizures, I can tell you that I do know your feeling of joy hearing that six month visit date.

For months we have been seeing Rhett's cardiologist, adjusting medications, scratching our heads as to why Rhett's pulmonary pressures were so high. Frantically trying to find a way to reduce them before it was too late.

Our last visit with his Cardiologist was in the PICU just two weeks ago after Rhett had just come out of surgery.

He walked in smiling, no furrow to his brow like we had seen so many times before.

He told us for the first time since Rhett was born that his pressures were normal, not only that, but his heart was no longer enlarged, and the right side of it had a normal thickness.

We had found Rhett's magical cocktail of meds and oxygen to relieve the stress on his heart and lungs.

Yes, we too may need to adjust medication in the future. We will still face difficulties when Rhett gets sick, especially with colds and upper respiratory problems.

But for now we don't have to go back for 6 months either. The heart cath has been cancelled, we are just going to keep doing what we are doing, we aren't going to mess with a good thing.

It's hard though, as I have so many friends up at the hospital right now as their children are fighting for their lives due to heart issues. A sweet baby boy is receiving a new heart today as I type. His mom and dad have been waiting for so long for this day.

Another little one has been in the PICU for 109 days, and is only 7 months old. They don't know why her heart won't respond to surgeries.

My heart breaks for these families, and all I can do is pray that their miracle will come as ours has. I do feel lucky, and I do thank Him for taking care of my son, and allowing us more time for him to teach us, and those around him.

So I say congratulations to you my dear friend. Congrats to Zoey who has once again shown the world that she is fighter, and no matter what is thrown her way she will make it.

Now I hope you can relax and work on a lifetime of memories for a while.


Pam and Rhett

Kele said...

I needed this today Heather, I SO NEEDED this. For more reasons than I can leave in this comment box. HOPE, HOPE, HOPE...
I am so, unbelievably pleased and comforted by this wonderful news!
I wish I were there to give you and Zoey a big hug, I rejoice in this blessing for my amazing friends!

Cleo said...

Heather, I'm happy for Zoey Grace and for you. Zoey Grace is a beautiful warrior!!!, have faith in her, believe in her amazing journey. Zoey Grace will continue to take you to higher places ~

Sophie's Story by Elaine said...

The waiting room. I hate the waiting room. The waiting room of an "ology" is never good. No one goes to an "ology" appointment for a perfectly healthy child. Whenever I enter the waiting room, I can't help but take a look around. The anxious look of a parent holding their newborn baby not knowing what is it store for their precious little baby. The ease of a parent sitting next to their older child because they have been there so many times.

By the way, I just love that I get to read about Zoey's "story" and see that precious smile on her face with the beautiful pictures you post of her.

Special Needs Mama said...

Bravo! Six months! Did you know Dr. S. was our dr?

Mary said...

That is such great news! It's also nice to hear you found a doctor you like and trust. That is so important.

BTW, I love the quotes you add to your posts.

Evalena's Mom said...

I love reading about Zoey's life and seeing her joyful smile. I sat with my daughter, Evy (she's 5 mo and also has Down's), and read aloud to her about Zoey. We enjoy listening to your music - esp Jack Johnson. We're praying for continued health for Zoey and strength for you and your family!!
We know of you and Zoey through the McKee family in Aurora, Il. We'll stop by again :) Kathleen and Evy