Friday, October 12, 2012

2 Years

I woke up this morning to an alarm going off at 5. Not an alarm on a clock, not an alarm on a phone, the alarm on the bed of my 5 year old sleeping next to me that tells me when he's having a seizure, or when he stops breathing. As always I hopped out of bed, but found nothing more than that he had rolled off the sensor and triggered the alarm. This is a completely normal occurrence that happens 10-12 times a week. Sometimes I find him sleeping on the floor because he's rolled out of bed, but others I find him face down in his pillow convulsing violently and know that without that alarm the morning could end in tragedy. What do I do when I find him like that? Do I panic, do I call an ambulance? Nope, I calmly turn him on his side and give the clock a quick glance to check the time. I stay with him rubbing his back until he comes out, or I notice it's not stopping and I need to give him medication to stop it for him. He always comes out with a very deep breath to fill up his chest again, then fidgets around as his brain searches for normalcy. I cover him back up, kiss him on the head, and tell him I love him. Then get up and go about my day.

2 years ago on this day at approximately 3 in the afternoon this routine was played out for the first time. The difference is I didn't have my honorary degree in neurology. I had no idea what was going on, I didn't even know what a seizure was. I saw my silly boy slump down in a chair and I assumed he was "playing dead" as 3 year old boys love to do. I remember calmly getting up with a smile on my face, then I remember the look on his face. It's burned into my brain forever. His head was thrown back, his eyes were rolled back in his head, and he was gurgling. Seizure safety is to lay the person on their side. I didn't know this, I thought he was choking. I flipped him up over my shoulder and smacked him on the back as I made a 911 call for the first time in my life. I don't even remember what the lady on the other end said to me. I held him as he came out and collapsed in my arms as the paramedics showed up. They put him on oxygen and assessed him as they told me he most likely had a seizure. I called Mike at that time to tell him. I remember trying to speak as calmly as possible and told him he had a seizure and the paramedics were taking him to the hospital. I heard him half scream, half cry "What?" from the other side of the phone. I lost it and gave the phone to one of the paramedics because I couldn't keep my emotions in check anymore. He arrived just minutes later to ride to the hospital with him. I was left in the doorway holding a then 8 month old Taylor completely in shock.

I made it to the hospital soon after. I found him sleeping, and was informed he had a CT and full blood panel done and that nothing was out of the normal. We were told it was febrile, and he had a fever that we missed. We were told febrile seizures are extremely common in kids, and that it wouldn't happen again. Just go home and go on with your life, it's no big deal. So we did.

That was the worst day of my life. That whole scene plays out in my dreams almost every night. I wake up in a panic, but unfortunately I realize the nightmare is our reality. I glance over and see the shell of the boy he's become. I see the oxygen tubes on his face. I hurt for him. The upside is he's young. Since this started at 3 he didn't have enough time to develop self awareness before it hit. I don't think he even realizes he's different than other kids, he just loves everyone, and sees everyone as equal. I wish everyone could live their lives through the same eyes, there would be so much less hate and discrimination in the world.

So we've gone on with our journey. 13 medications, and insane diet, and dozens of hospitalizations later the topic of brain surgery comes up. It's an interesting transition you go through. It's always the next medication, then this outrageous diet, but then you get to a point where you've reached the bottom of the list, and you know it. I remember the appointment, Ethan was asleep in a wagon and I asked where we go from here. His doctor replied that there's one more medication, a very risky drug named Felbatol, and after that perhaps a VNS or corpus callosotomy. I knew what Felbatol was, I knew was a VNS was, I had no idea what a corpus callosotomy was. In all my Dr. Google research I had never even come over the term. I looked it up on the drive home and remember exclaiming, "That's brain surgery". I read every bit I could about it from there on out. It's strange when you start to realize that brain surgery could be less risky, and have a higher success rate than the majority of drugs your child has been on. It's that switch when you want brain surgery for your child, this "elective" surgery as they referred to it as.

So we start bringing it up with the doctor whenever we could. But come to find out they don't actually do this surgery for kids like Ethan there. He doesn't fit their criteria perfectly. He has nearly as many tonic clonics as he does drops along with a plethora of other seizure types. Statistically the surgery is most effective on drops. But I kept searching through medical journals. I was reading articles written in a language I barely understood, having to look up word after word just to make sense of it all. I was reading different case studies every day. I kept finding the same information; the long term effect on tonic clonics and other generalized seizure types was nearly as good, if not better than the outcome on the atonic seizures. Ethan fit perfectly. After much pushing, his doctor brought him up to the other neurologists and neurosurgeons at their meeting. But they too felt he didn't fit the criteria of whom they perform it on at that hospital. But this time his doctor agreed to do the same digging and research I had been doing for months, and luckily she came to the same conclusion as me, and convinced her colleagues of the same. They agreed to do the surgery on him because of the new understanding I had a part in giving them on the procedure.

So he had the surgery 23 days ago. We've watched him since then regain his strength, regain his speech, and develop new skills that he hasn't been able to attain in years. But what we haven't seen in 25 glorious days is a single seizure, not one. Ethan hasn't been able to retain new information over these last 2 years. His brain has been too much of an electrical mess to hold onto anything. But now everyday something new is coming out of his mouth. He's suddenly repeating all these little phrases we've been saying to him for years. He has a new found love for puzzles, real jig saw puzzles. He can sit down and do one without even looking at the picture. He had trouble with peg puzzles for toddlers before the surgery. He just seems to be learning so much. We still haven't lost the fear that any day the seizures can return, and we never went into this surgery expecting seizure freedom. Yet every day that thought enters my mind, what if this is it? I try to push it away, I don't want to get my hopes up. But every day when someone asks how he is I respond with 11, 18, now 25 days seizure free, checking off the days like a recovering addict. 25 days since our last day of hell, and counting!

So what's next? Who knows. The one thing I've learned is to never expect the expected. Hope for the best, but brace for the worst. He goes back to school on the 29th after fall break. I can't wait to see what he comes home with every day. I can't wait to ask him what he did at school that day and for him to actually have an answer. I can't wait for the holidays. I can't wait to eat Thanksgiving dinner and not watch him have 100 drops at the table smacking his head on the chair repeatedly like he did 2 years ago, or see him completely passed out on the floor with his dog like he was last year. I just can't wait to see Ethan. What people don't understand is we lost him on this day 2 years ago. Everything about him changed, he is not the little boy he was. But every day seizure free we're seeing pieces of that boy coming back. There would be no greater gift than the surgery giving us our Ethan back, the boy he was on October 11, 2010.


  1. You're an absolute inspiration. Ethan has a Hero, and he calls her mom. Big hugs xo

    I am beyond excited that his condition keeps improving and that there are no seizures so far. Will continue to pray that this remains so.

  2. For the life of me, I can not find words in my vocabulary to express how fantastic this is. I can just feel how enthusiastic you are about the future, especially for Ethan. I have tears of joy, I can only imagine how much meaning this Thanksgiving will have for you all. Such wonderful news!

  3. wow. this is an amazing post. your words are powerful. thank you for sharing!


  4. Beyond thrilled for you all! Every day is a new day as he "wakes up" more and more! What a joy! May God continue to bless you all! Zaki sends high fives!

  5. So excited for you! What a blessing to see that precious boy coming back. God is good.


    1. You and Mike have been courageously dedicated parents an inspiraton to all who read your story. Never give up, always hope and pray.
      Thank you for sharing your story. Praise God for Ethan's successful surgery, and we continue to keep you all in our prayers.
      We love you
      Grandpa and Grandma

  6. I'm a stranger to your family, and yet your post fills me with joy. My son started having seizures about 2 years ago as well, and during that time of internet research I stumbled on your blog. I've only read it occasionally, but happened to read about the surgery and found myself the other day wondering how this wonderful little boy who I'd never met was doing and hoping that his recovery was speedy and that you were seeing some success. I can also totally relate to the desire to hope that you've finally figured it out and yet the way that you have to hold that hope back because you couldn't take it if it isn't true. It's a horrible thing to not be able to embrace that hope fully, but I have faith that you have taken a great (and difficult) step and soon you will be able to fully open your heart to that hope.

  7. I too am a stranger to you. I comment on YouTube. I read your blog but you don't know me. However I feel if that still means seizures but not in extreme to stop Ethan from coming back as he is that IS a happy ending.

    I will be checking back. Please continue to write when it's right for you. They are like little gifts. He is is YOUR son but he has people he will never know who loves him and are pulling for him.

    To long and happy school days, holidays and all the days to come.

  8. OK I've typed this 4 times now. My keyboard hates me and I am having a stressful day. Even when I hit send my message came to you in a scrambled mess.

    SO in short. I am so very happy. This news makes my day much better. You don't know me but I follow you on YouTube and on your blog. I have been following Ethan's journey for what feels like ages now. I feel some of your heart ache and my own pain and hope for little Ethan. I have love for your amazing little man. What I always felt was "that poor baby boy'.

    Now I am elated! I hope to hear about his new adventures. And if for some reason he does get some seizure activity back I am hoping it's tiny amounts that won't change Ethan and allow this good to keep growing into a great life.

    So from a stranger, I send you my love and hopes for a wonderful long and happy life ahead for you all. You deserve it so much.

  9. Hi from New Zealand - our son Phoenix has Doose Syndrome and Im on the email group list as well. Its great you are telling your story through your blog and I will follow your journey with interest - have a lovely day, Karina