238 Days - Why My Life Depends On Tomorrow's Run

The morning of September 16, 2006 was a sunny one. The skies were as blue as I had ever seen them and with less than two months left, my mother-in-law and I decided it would be the perfect day to hit some stores in search of my son’s first Halloween costume. It was a Saturday, so I kissed my husband lovingly, told him to enjoy some alone time so he could listen to his new Tool album loud and without interruption, and then packed my beautiful sixteen-week-old in the car after giving him his morning bottle.  We had about a half-hour ride ahead of us before we got to Lenox Mall.

I parked in my normal spot – right outside of Banana Republic – and proceeded to remove my sleeping baby boy carefully from the car and into the coach. I breathed a deep breath as I looked at how peaceful he was and smiled at Linda – Todd’s mom – who I’m sure had the same loving thought. Here he was, her first grandchild, and my first child, and here we were doing something that would have been very special to us both; but especially to me with Halloween being my favorite holiday. It was a wonderful moment in time that was shattered not ten footsteps later.

“Barbara. What’s he doing?” Linda said, as we walked toward the mall entrance.

“Huh?” I replied, looking at her but not yet looking at my son. She was looking down with a terrified yet calm expression on her face which made me immediately look toward the coach that was cradling my sleeping angel just a second before.

Roman’s eyes were open. Well, let’s say his lids were open, but his eyes were rolled upward to where I could barely see their color – just white. His head was turned to the right and his mouth was slightly ajar. And his tiny body… his little limbs… were shaking rhythmically. They were shaking. Shaking. Shaking. Shaking. Something was happening that I wasn’t familiar with. Something was extremely wrong.

My immediate thought was that he was choking. He had just had a bottle and had a history of reflux which is why he was never pictured without a bib for the first eighteen months of his life. I unbuckled him from his carrier and proceeded to jog, then run, full speed toward the mall entrance doors, all the while feeling his rhythmic shakes under my arm, and all while chanting, “Oh no. Oh no. God no. Oh God please no” until I reached the doors that flew open in front of me and ran into whoever was coming out. “The bench. There’s a bench,” I thought and ran toward it to place my baby – my pride, my world, my life – on it so that I could take a closer look at what was happening.

Before I tell the next part of this story I’d like to make clear that this is an excruciatingly painful memory – the darkest day in my entire life. I can barely type the words you are reading right now without stopping every few to clear the tears from the keyboard as well as my face. The next part tells of how a seizure took my son away from me, almost forever, never to return.  

I stood back and looked at the baby on the bench and all I could tell was this:

He was as blue as the sky that blanketed him on his ride in my car just moments before.

He wasn’t breathing. At all. From his mouth or his nose. No air. No breaths.

He was convulsing uncontrollably. Shaking that rhythmic shake, only now harder, and much faster.

He was dying, as I watched helplessly, in front of my eyes that couldn’t see his because they were up inside his tiny ginger head.

In a fraction of a second I had seen all of the above and all I could do was scream a scream louder than any you have ever heard.

“He’s turning blue. HE’S TURNING BLUUUUUUUUUUUUUUUEEEEE!!!!!!!!!!!!!!” My mother-in-law screamed behind me to whoever would listen in a crowded mall packed with Saturday shoppers. “CALL 911!!!!!! CALL 911!!!!!!! HE’S BLUE!!!! SOMEBODY… HE’S BLUE CALL 911!” she screamed at the top of her lungs as she ran in and out of the two closest shops.

I was frozen. He was still convulsing and now purple and I started to try to attempt infant CPR but I was shaking so badly that I couldn’t turn his head which was still fixed to the side. A crowd had gathered instantly – within seconds of both of our screams – and a security guard was on his walkie-talkie calling for an ambulance. And then, he started to slow. They started to slow… the shakes… the convulsions… and his eyes were beginning to close… and I thought “no God, no no… God no don’t let him die… don’t let him die and I can’t save him. GOD NO NO NO NO NOT MY BABY, GOD…. please…. God, please…” and I was wailing on my knees in front of him until I felt two hands across my shoulders move me out of the way.

A middle-aged man with slightly graying hair took Roman from my hands. His wife looked at me and said, “He’s an anesthesiologist” in answer to my questioning look. He proceeded to unclog Roman’s airways which were filled with formula, and perform CPR on him. It seemed as if hours went by. I watched this man’s hands working on my baby. I watched how calmly and carefully he turned him and handled him, focused and yet shattered that my child would never open his eyes again until… 

I saw Roman’s body move. I watched vomit spew from his mouth. And then, I heard… his cry.

So often I have referred to that moment with an analogy: the crowd erupted as if Georgia had beaten Alabama (or like the Eagles beat the Cowboys. Or like the Yankees beat the Red Sox.) It was the first time in the minutes that had passed that I looked around at anything or anyone but Roman. There were – no exaggeration – HUNDREDS of people both around us and above us looking over from the second floor of the mall, and every one of them was cheering and clapping.

“He’s okay. He’ll be fine,” said the man as he placed my screaming son in my shaking arms. “He’s okay. You’ll be okay. Take a deep breath.” And I held my baby against my heart and looked at this man – this angel – and mouthed “thank you” through my tears. He smiled and rubbed my back while his wife helped me sit down on the bench so that my legs didn’t buckle beneath me. “What’s your name?” I managed to say to him, afraid that he would go and I would never know. “Tom” he said, smiling, and within seconds, the EMT’s were at my side, blocking my view of Tom and his wife until I no longer knew if they were there or had left to continue their Saturday shopping.

We spent the next six days and three more seizures in the Epilepsy Unit of Children’s Hospital at Scottish Rite.  We witnessed a lot. We learned a lot more. We watched our son get stuck with needles in places we didn’t know existed. We watched him go under for his MRI. Have Spinal taps. Blood cultures. CT scans. Upper GI testing. All to determine what we found to be the eventual outcome: he had a seizure in the mall and choked on his own vomit which blocked his airways causing him to not be able to breathe. And he would continue to have seizures until he had his last in July of 2007 – just over five years ago – and hasn’t looked back.

Those of you who have been friends with me for years know this story. You also know that I used to document his seizures through my blog on of all places, MySpace. Well, I no longer have a MySpace account, but I found one of the blogs from it recently that I had put into an email to myself. I’d like to share it with you now:

To you, I write

I think about the future; if 20 years from now, MySpace will still be around. If my page will still exist. If I will still exist. I think about you looking at the pictures... the ones of you as a child; growing, smiling. The ones of my trips to Europe, or around the country. I think about you laughing to yourself at how self-absorbed your mother was, or how kooky or cheesy or utterly ridiculous. But I mostly think of you reading these blogs... these thoughts or emotions that were but snapshots in time that I chose for some reason or another to post on my public page. Today, I write this for no one but you. I keep a written journal. I started it on the day I knew you were conceived. The book, a beautiful embossed dark brown and black hardcover, was a gift from a co-worker who couldn't have children of her own. She said to me, "Mama got pregnant with me when she was 15, and when she was in the hospital she wrote down everything about her experience in a book."  She then pulled out a tattered spiral notebook, pages brown and torn with scribbles and blue ink. She cried as she showed me and read me a few passages. She ended with "It's my most prized possession" before handing me a tissue paper-wrapped present. Through my own tears I promised her I would use it often and do the same. And I do.

v  January 06, 2006: Today I am 16 weeks and 1 day pregnant with you. My belly is growing larger and my clothes are getting smaller. At 4:05 p.m. today I felt you move for the first time. I was sitting at my desk and felt a 'thump.'  As I looked down you kicked three more times. It felt like popcorn popping and it was wonderful...

v  February 18, 2006: Today I am 23 weeks and 2 days pregnant with you...my son. I found out today that you are indeed a boy. You have been named Roman Patrick and I am already so in love with you...

v  May 28, 2006: Today I am no longer pregnant with you my darling because you arrived at 4:11 this morning and you are beautiful...

I continue to write in it when I can... sometimes once a week, other times once a month. Always a full page detailing how old you are when the entry was made and what is going on in our worlds. Today I wrote about your seizure; the second one in 48 hours. I wrote to you telling you how very much I want to trade places with you, and how utterly helpless I felt when I got the call from school. Today I wrote about my agony and my disgust at the doctors and myself and my faith. Today I wrote as a helpless individual who is losing faith in herself as a mother, and in the doctors who are supposed to help you. I wrote with anger and fear. I wrote and I wrote and then I stopped writing. Today I tore an entry out of your book and started a new one. I told you that you are 2 days away from being thirteen months old, and that your newest word is 'dan' (meaning 'fan'). I wrote about how much you're walking now, and about that 8th tooth that finally broke through. And I told you, as I always do, how very much I love you.

I wrote to you today, in more than one place. Chances are, you'll only see the happiness when it comes time for you to know. I'm fine with that.

Tomorrow, I am running a 5K to raise money for research and programs for people with epilepsy, but I am not just running to raise money; I am running to heal. I am running away from the memories above. Away from the pain caused from watching my only son nearly die because I couldn’t help him. I am running away from the fear that a seizure will strike him at some time in his life once again. I am running away from the disappointment I felt in myself for not doing more, and I’m running toward greater things.

Tomorrow I am running to prove that I can do it. To show my son, who is now six, and five years seizure free, that nothing will stop you from doing what you set out to do. Not asthma, which I have. Not bad knees, which I suffer from. Not being almost forty, which I am fighting here on this very blog. And definitely, not having seizures. Tomorrow I am going to show him that he is the light at the end of my journey, and I will be running in his name.

And Tom, if you’re out there, and you read this and you remember, know this: tomorrow I am also running for you, because without you, I’d never have the legs to run.

GO TEAM ROMAN THE RED.

GO ROMAN.

And, GO ME.