Saturday, June 18, 2011

One Year Ago Today.

We walked in for our appointment with the neurologist to get the results of Sadie's MRI. That morning, I had a sinking feeling in the pit of my stomach...I just knew that it was not going to be good news.

The neurologist who diagnosed Sadie was an extremely kindhearted woman who began by having us explain to her what had been going on with Sadie. She then showed us photos of Sadie's MRI and pointed out the various cysts and abnormalities in her brain. It was during this appointment that she told us Sadie had Aicardi Syndrome. As Adin wrote notes in our notebook, he asked her how it was spelled.

She gave us literature about Aicardi Syndrome and began to explain what it would mean for Sadie. As Adin and I read the markers of the Syndrome: missing corpus callosum, seizures, infantile spasms, retinal scars and micropthalmia, we thought, "Yes, that's Sadie."

I remember the neurologist saying that Sadie would only develop mentally to 6 months to one year of age and would only have a 40% chance of making it into her early teens. I had to ask her to repeat my brain wasn't able to process this so quickly. She stepped out of the room to allow us time to digest this information. When she came back, we talked about seizure medications and follow up appointments with neurosurgeons and epileptologists.

Driving home was a blur. Adin and I didn't say one word to eachother. All that we had imagined for our daughter - playing softball, soccer, singing in the school choir, going to her first prom - had been taken from us in that short one-hour meeting.

Once arriving home, we began the hard task of making phone calls to our immediate family. How do you begin to deliver such bad news? I would always preface the conversation with "You're not going to know what to say when I tell you this....and that's OK."

The next few days were filled with profound sadness. I awoke the next morning hoping the day before had been a dream. Unfortunately it was not. Our families were (and continue to be) our saviors. It was comforting to be surrounded by people who shared in the sorrow.

Little did we know what the upcoming year would have in store for us - therapy sessions, numerous doctor's appointments, seizure medicines, hospital visits, oxygen tanks. But the past year has also given us a beautiful little girl who laughs when mommy coughs, smiles up at us from her crib, gets cranky when she's tired, puckers her lips when her Aunt goes in for a kiss, and looks with surprise when Baxter cries over a squirrel in the backyard.
Sadie has helped us become more tolerant, patient, kind and forgiving. The past twelve months have given us a broader perspective on life and reminded us to cherish every moment, because you never know when it could be taken away.


  1. ‎"I gotta get the bull by the horns and rock this precious life I have been given cuz it can be taken away so easily." ~Ellen Garrett

    This quote is from a dear, dear friend I lost this past week...she was an incredible soul who touched many lives with her amazing spirit. Her wise words reminded me of your post today...and it's so true, cherish EVERY moment! Sending love to you today and every day. xo

  2. You don't know me but I am friends with Megan. I read your blog posts from timevto time and I always take abminute or 2 and get emotional or sometimes angry that your beautiful daughter has to deal with this adversity. As acfather myself, I am really inspired and so happy that Sadie has such wonderful and amazing parents and that little girl is going to have a great life with you guys involved. I tried to express this the other nite to Megan but my vocabulary can not express how happy it is to see such great parents taking care of an amazing little kid... Keep up the great work and u guys are lucky to have her

  3. Dear Cathy and Adin,
    You have no idea who I am, seeing as I'm just a random 17 year old girl from Atlanta. However, I somehow came upon your blog and read your incredible tale about Sadie, starting at the beginning. Y'all remarkably brave and serve as a symbol of unwavering faith, even in the face of adversity. I hope you know that even kids thousands of miles away are praying for your precious baby girl!God bless your family!
    Love, CAROLINE

  4. I meant to say "Y'all are"... oops!