June 24, 2011

In Stride


Ya'know how when you can't find the right words to write or say for yourself but there you go in a comment on someone else's blog post or a scrawl in the card you finally remember to send or a spill to a stranger in the elevator? It comes out and you're like, oh there it is.

We are at Children’s today for what should be a very routine EEG but still, it’s been a long time since I’ve had to face this part of my life. It’s not coming easy. I mean, my body goes here. And somehow I managed to drive the car here, but the rest of me is somewhere else seeking shelter and safety.

Taking a ten year old to have an EEG is a lot different than taking a three year old. He doesn't remember any of it, so now it's all new and scary. Again. The past few weeks leading up to this have been emotional and I feel awful because all this time he's not understood, and I could have prepared him more. Last night he was worried that the EEG would be able to read his thoughts. The more I type here the more I plan to delete some of this post. But I just want to see if I can get rid of some words. Bless his heart.

Mostly I didn't want to even mention the occasion but we have always been open about Noah's epilepsy and I feel it's important to be. It isn't a secret - unfortunately for him for the rest of his life others need to be aware, and I wish he didn't have to wear that badge but- fortunately for the circumstances he can add a lot more charm to the disease. I'm not going to share any other personal details that go along with it or anything, as I imagine neither would you. But, the word epilepsy is used and understood around these parts and it's not ever said in a shameful whisper. It's a matter of fact. Carter asked this morning why he didn't get epilepsy. It was a nice way of asking why it happened to Noah.

When he was younger I used to crawl up in the hospital bed with him oh who are we kidding I crawled up in there and snuggled in tight with him today. That is when I feel centered and safe to the core, just like going back in time. We could have hid under those white covers forever would it be possible. We are both exhausted.

If they gave report cards for EEGs, he got an A+ with extra credit. The all-clear. We are sent home. He is so happy and confesses that wasn't bad at all! I think maybe he even had fun. We rock it out on the way home. People watch us from passing cars on the Dan Ryan but we do not care. Make it or break it, we're gonna take it and jam, Sam. Feeling sorry for yourself is so five minutes ago.

He played me songs on his iPod. This one, thankfully at a long stoplight so that I could stare off in the other direction so that he did not see the burning water falling from my eyes. Oh no not now the breakdown! Let us get home. Let me be the strong one for just a little while. Let me let go so I can watch it go past.

25 comments:

  1. Does Noah know how much strength his story has given others? Like Carter, I don't understand why Noah has epilepsy, but I know that his having it has made the world that much easier, that much more HOPEFUL for others touched by epilepsy.

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  2. I'm crying reading this. Happy because it's all clear, and sad because it's awful that anyone has to go through this. Our babies, especially, shouldn't have to go through this.

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  3. I remember the last time I had to get an EEG-I was almost 16 and hadn't had seizures for a while-it was still scary, but mostly I was mad because I couldn't do my hair and I was having some seriously great hair days and then I had to get all that goop out of my hair and I remember picking it out for seemed like an eternity.

    So glad that he did well. I was thinking of you lots this morning at work.

    xo

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  4. So thankful for his good results. And I love that song on his ipod.

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  5. (((HUGS))) Our 8 month old has epilepsy (his seizures started at 4 1/2 weeks). Im so thankful that Noahs EEG was great!! I look forward to the day when we can go more than a few months without a seizure.

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  6. oh i've been there. and can relate. so glad results were good. it sure makes you thankful for all the little things, doesn't it?

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  7. crying listening to this song and reading...so thankful he has you! :) you are doing great momma.

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  8. What a brave guy... I read this and sob... you are such a brave strong mama, and you don't even know it. Lot's of love, ride the wave and enjoy the great feeling - you guys sure earned it!!!

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  9. Noah is strong just like his mommy. I think you found the right words. I'm so glad everything went well.

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  10. you are both so strong and such an inspiration. I learn more about how to just be a better mother from your experiences. I am so glad to hear the happy ending to this day. xoxoxo

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  11. When you get to the line on a registration form that asks about anything they should know, medically or non, do you pause? I mean, yes, they need to know, but does it seem like it was so long ago, like you want to bury it in the past?
    And it doesn't affect the day to day?

    I do. Every. Time. I always think, do the need to know Kolby was born with club feet, has low muscle tone and a speech delay? Will they judge him before getting to know him? Will they bypass over him?

    So glad it was good!

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  12. hugs to you. well written post. I hope spilling some words out helped you feel meaning, closure, and peace with this current chapter of his/your story.

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  13. Good job sharing, Stephanie. Not every story feels right telling, but you did this one just great ;)

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  14. Oh, that it could read thoughts. I would be scared senseless myself.

    I tell you this all the time, but your love for them moves me to tears, Mama.

    Thank you for sharing these stories. It's the way compassion grows, really.

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  15. Your family had a victory! Enjoy the celebration! Even with tears, if necessary. Love and prayers, and celebration with you!

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  16. All-clear, hurray! That's wonderful. Thank you for sharing that, and for sharing Noah's story. It's sure been an inspiration and source of hope for us.

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  17. Yay for the all clear! I agree, your talking about it has made the idea of it less scary for me. I think I'm in the mode where I'm worried there will be something to deal with when it comes to this child and Noah's happy go lucky bravery and your sharing information has checked this one off the list as one to be afraid of.

    Oh, and I love OK Go and that song!

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  18. You and I have such different lives and different thens and different nows but oh my goodness do I feel this. I've not been touched by epilepsy but I know--all too well--the cozy up and hide under the covers forever and ever amen.

    PS. Weird, weird video.

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  19. Thank you for sharing darling! God is awesome in how he works. The way brothers care for their siblings, the way a mamma feels about what her babies are going through, the way He makes it all GOOD in the end - no matter how hard the road is to get there... Triple arm pump for an A+!!

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  20. so VERY glad for you that everything came back good. xo

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  21. I'm breathing a sigh of relief that the EEG was okay. Thank you for sharing your story!

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  22. Oh, Steph.

    Hugs times a million.

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  23. Woohoo! I'm just catching up with life now that we're back from our family reunion, and I'm so glad to hear that the EEG went well & with good results! :)

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  24. Wow! I love how you left it on the page. Blogs are great for mommas keeping everything together. What a great pair you two are even in tough times. Go celebrate!

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  25. How scary for you, Steph! Thanks for sharing this part of your heart, your life.

    You remain one of my very favorite bloggers.

    stephanie@metropolitanmama.net

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