I know. I know you're wondering what any of this has to do with anything, but I hate that sickening lurch in your stomach when you're going down the stairs in the dark and you lower your foot expecting another step, only it crashes down through thin air before finally meeting the floor? Or worse when you think you're all out of steps but really there's one more and you stumble and fall and lurch? So I count steps. One and two and three and... well, you get the idea. I count steps because I hate that feeling, that lurch, that momentary uncertainty when your brain isn't quite sure what's happening.
That's how our life has felt since Tommy's seizures, and I feel like I've been doing a constant eight counts to find my way back to normal. Except that I'm realizing that our life is a new normal, a new brand of eight counts, finding normalcy in all the things I didn't know a month ago. I didn't know the sting that's felt when a doctor tells you your child was probably just having a temper tantrum, when you feel like you're being judged for making it up because he looks just fine now and you have to FIGHT and use words like "absence seizures" and "grand mal" and tell her how you saw him fall, how he was smiling at you and then BAM, just hit the ground like someone had turned him to stone to make her believe you. I didn't know that my calm parenting, the mom who never checked to see if her babies were breathing, would morph into someone who tiptoed into the nursery 1, 2, 3, 4, 5, 6, 7, 8 times a night to place an anxious hand on the rising-falling chest, counting breaths and heartbeats. I didn't know how my always calm, even-keeled husband's voice would reach a frantic level of panic when he thought something was horribly wrong with our child. I didn't know what it'd feel like later, in the quiet of our bedroom to admit that we both thought his blue lips meant he was dying and that in that moment, we both felt like our worlds had stopped and would never start again.
I also didn't know that November is National Epilepsy Month, but I know now. Because Tommy's seizures are inexplicable, he was diagnosed with epilepsy. I never knew this. I thought epilepsy meant having a seizure in reaction to flashing lights, but actually, it can mean so much more. I didn't know about the eight counts away from the last seizure (October 16), but I know that in our new normal, each seizure free day is more beautiful than the last.
This is the face of epilepsy.
He's in good company.



22 comments:
I am so moved, and the way you ushered in your story made me surprisingly not devastated, but made me feel like everything is going to be ok. I needed to feel that today.
I'll never understand the un-fairness of it all, or how you adapt and swoop and go on living. You are doing amazing.
Steph
Erin, I'm crying. My heart breaks for you. I've told you before that I started having seizures at 8, what I didn't tell you is that I wasn't diagnosed with nocturnal epilepsy until I was 14. I went to two doctors who told my parents that I was faking to get attention. faking. seizures.
I hope you have found a doctor that you feel comfortable with and trust.
Each and every day without a seizure is a victory! Your family remains in my prayers!
oh, erin. crying. you are a wonderful mother. so wonderful. i, too, will never understand that unfairness of it all. i hate that you have to feel any judgment...any doubt from anyone. as if you wouldn't give almost anything for this not to be true. love you, love tommy, love your family. always praying.
((hugs)))
Oh sweetheart. Big hug to you. HUGE hug for at least the count of 8.
I heart you. And the way you described those heart stopping moments brought tears to my eyes, because I remember. And I hope and pray that each day is another day further away from those memories. And now I pray that for your family too.
I've always counted steps. Ever since I was tiny and learned to count.
Oh, my heart breaks for you and your family. This moved me to tears and my heart is filled with so much hope and love for your son.
I can't imagine.
You're a strong mother Erin and he is a strong little boy. Praying for you all...
You are a beautiful writer... a soul within a soul within a soul. Your Tommy has a gift in you and Shane that will carry him and hold him through and over and beyond each 8. You are a miracle of a Mommy. My heart is bigger than it was before I read this post. xo
Oh. Gah.
There is nothing worse than the anxiety we feel when something is wrong with our babies. I'm so sorry that this is now a thread through your days as you adjust to this new normal.
((hugs)) to you.
this is beautiful, erin. so honest and poignant and telling. it's NOT FAIR that you have to deal with this. it's NOT FAIR that Tommy has to live with this. it's NOT FAIR that anyone has to deal with this. you are simply amazing.
i have been wondering and praying about tommy and how he has been doing. this is a beautiful post, erin. i can't imagine going through what you are, but, know, that your story is so inspiring to others. i pray that tommy will continue to be seizure free, each day is a true blessing for all of us.
This touched my heart! You are an amazing writer!
Oh Erin, so beautifully written, and I know that awful "what if" feeling you had with your husband. Take it one, two, three, four.... steps at a time. :) You are so strong. xoxoKate
Wow. This is so beautifully written. My heart breaks for you that you're dealing with this, but swells for you that you're finding your new normal and doing such an amazing job. It's unfair that this is happening and worse that you have this situation with the doctors. I can't even imagine. I hope that you have found a new set of doctors that will listen to you and believe you and that you can trust. Thinking of you all and praying.
I just wanted to say "hi." I found your blog just before Tommy had his first seizure. My youngest son, Ethan, has epilepsy...infantile spasms. He was diagnosed in April at 7 months. It totally shook my world. He has been on 3 different meds. The last one started Saturday, and I haven't seen a seizure since Sunday. That's the first time we've gone days without seizure since July. It's so scary and hard to watch. My son's seizures are like muscle spasms and he does not lose consciousness or stop breathing, so I do not understand how you feel then, but I do understand how devastating it is for your otherwise healthy child to be thrown into this diagnosis. I'm so sorry you are going through this, and I wish no one ever had to. Sending hugs and good thoughts your way. Stephanie
I can't believe it, it just isn't fair.
Thank you for writing this, love you.
He is in good company. One of my best friends has epilepsy. Let me know if you'd like to talk with her. :)
Beautiful words from a beautiful mother.
Praying for your son and your hearts!
Hugs
Jen
i love you. i wish i could do more than just send my love.
Oh wow. Faking? Really? Tantrum? These people need training on how to be compassionate! I am sure there are some wackos out there that make things up - but mostly? We are all just trying to take care of our kids as best we can, assume the best in people not the worst. Because when you are not making it up it's rude for them to think that you are, and it hurts.
So glad he is doing better right now. Hoping and praying for better and better and ALL better.
{tears spilling}. Here's why: "I didn't know what it'd feel like later, in the quiet of our bedroom to admit that we both thought his blue lips meant he was dying and that in that moment, we both felt like our worlds had stopped and would never start again."
My heart goes there with you. And it breaks, a lot, for how you felt in that moment.
I don't blame you for the counting. And I don't have words to tell you how badly I hope that, soon, there is so much space between your eight counts that you forget to do them.
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