Saturday, September 22, 2012

Perspective

After 69 days seizure free, L had a seizure Thursday night.  Sixty-nine days is the longest he's gone without a seizure since he was first afflicted about 18 months ago.  Still, it's hard not to see it as a failure.  My failure.  The boys' diet had been imperfect over the weekend, L missed his nap that day, and the boys were worn out and testing the limits as we tried to pick up the last few things at the grocery store.

L and Whim bashed heads over the shopping cart's toddler seat, and once again, L and I ended up on the floor, his body contorting in my arms in a way that will always be familiar, no matter how long a reprieve he manages. 

My first response was to blame myself and look for things I could do differently to assure it will never happen again.  But I'm recognizing the faults in that way of thinking and choosing a different perspective.  At the time we started the diet, L was having several seizures a day.  It's not unreasonable to assume that, had we not started the diet, he might have had more than 200 seizures in those same 69 days.
Day 2: more beautiful moments
We have filled those 69 days with beautiful moments, and on many of those days, seizures never even crossed my mind.

When his seizures were at his worst, if you would have asked me what I'd do to buy him 69 seizure-free days, I would have done almost anything.
With that perspective, 1:69 is looking like a pretty good ratio.



32 comments:

  1. It's heartbreaking to read about what your beautiful boys go through so often...I pray for them.

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    1. Thank you, Xae. I truly appreciate your prayers. I'm so thankful that Lennon's seizures are no longer a constant problem. I hate them when they crop up, but it's such an improvement on before.

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  2. Most good parents blame themselves at one point, but you're right. Yes, we're human but we're doing the best we can with all the love that we have. Reading your posts - there is no doubt that you have plenty of amazing and wonderful love for your boys. You keep doing what you're doing and don't look back. And of course, keep us posted because you're helping us parents out there cope.

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    1. Thank you, and I will. I really had no idea that blogging would help me find a community of like-minded people with similar stories. I wish I had started a long time ago!

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  3. I think, Robin, that there is a very positive perspective, and that is that you are working very faithfully to protect the boys, and by example, you are teaching them to take care of themselves. It would be impossible to never, ever have a missed nap, an accidental food...

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    1. Thanks Aunt Cynth,
      I know if my goal is for him to never have another seizure, I'm only setting myself up for disappointment. All I can do is the best I can, missed naps and diet slip ups included. Thanks for reading.

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  4. You're doing your best and we all have parenting moments when we feel like we're slipping. I think helping him achieve 68 days seizure free is an amazing accomplishment.

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  5. Hi Robin--
    Just discovering your blog (thanks for stopping by ours). This one touches me because although my children don't have any conditions that require this level of vigilance, I can relate because of my migraine issues. At one time I was having them several times weekly--then discovered that gluten is my primary trigger. At first I thought I'd found the magic bullet, but over the summer the number of headaches started increasing. I realized that if I still don't take care of myself (hydrate, rest, eat regularly) I'm going to get sick. When I get one, it's easy to blame myself because I can usually point right to the causes. Your post reminds me that we can never be perfect, and to stay focused on gratitude that I know so much more now about how to be well than I did all those years I just had to suffer. Thank you.

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    1. Rita, I'm glad you came by to check out my blog. I agree- though diet is key, rest and hydration are important factors, too. I hope you'll keep visiting- I've been reading yours! Best of luck with your migraines. You know, I'm gluten-free, too.

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  6. Amanda SommervilleOctober 10, 2012 at 9:39 PM

    Hi Robin, I am Chelsea Ingram's sister, Amanda, and she told me about your blog and I am soo glad she did! First, your boys are soo handsome, I love thier hair!:) I am so relieved to read about RAS here on your blog. My oldest son Preston will turn 5 in November, and I believe these are the types of seizures he has had. He has only had 3, which I am so glad that is all! They have all happened right after he got really hurt...actually one happened a week ago in the grocery store after his arms got stuck and twisted all funny on the cart..I knew what was coming because he did his silent cry and I probably did a big no no, but I was holding him through the whole seizure...man they never get less scary:( I know you know!! He had 2 others in the past after getting hurt..They last just for a short time and he comes back after a few seconds I guess. Instead of writing you a book here, I would love to email you and pick your brain if that is ok?:) My email is chetandamanda@yahoo.com and I would love to learn more from you and get to know you and your sweet boys!

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    1. Amanda, I am so glad you posted here. I'm going to email you right now, but from what you've written here, it really sounds like RAS to me.

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  7. Awww. Blessings to your family; praise the Lord for 69 seizure free days! TALU

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    1. Thanks, Susan. :) Glad to have made your TALU acquaintance.

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  8. Stopping by from TALU, I'll pray your son gets at least 70 free days this time around. If it helps, my cousin used to get seizures as a child, they never figured out why, but somewhere in high school they just stopped. I'll keep my fingers crossed for you.

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    1. Thank you, Ann! I always appreciate encouraging words like that!

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  9. Such a beautiful post about looking at the big picture and finding the positives. Sending thoughts and prayers to your family. TALU

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    1. Thanks, Michelle! We'll take all the prayers and good thoughts we can get. :)

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  10. I hope you didn't hold yourself accountable for too long. But I understand, I am sure I would feel the same way. I hope he's doing good. Love your photo.

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    1. Thank you. He's been doing great since then- over a month already.

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  11. You came to a great conclusion- yes, the one setback is frustrating, but you've come so far and should be proud of that!

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    1. Thank you! When I choose to focus on the positive, it's easy to see how far we've come. :)

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  12. Robin, I'm so glad I found you and your precious boys (through TALU). I'd like to echo what Anonymous said so beautifully; as parents we all blame ourselves. But you're doing the best you can, and there's so much love! You and your boys will be fine, I just know. Thanks for sharing your experiences here. I'll be back.

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    1. Thank you, Gerry! I'm glad you visited. I'll be checking out your blog, too. :)

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  13. You are a wonderful parent and you want to know why? Because you care. a=And even blame yourself, which is easy to do but I hope you have worked through that OK and you are feeling better. I hope your little guy has a lot of good days ahead. hugs and well wishes. TALU

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    1. Thank you so much, Debbie. It's hard not to slip back into that way of thinking sometimes, but I appreciate your encouraging words.

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  14. Just seeing your blog for the first time via the TALU. I can't even begin to imagine what it must do to a parent's heart knowing that at any time something like this can be triggered in their child. It's not like a cold you can see coming and take measures to mitigate. A seizure comes on all at once and must be truly frightening for both of you. Lennon is very fortunate to have such a pro-active Mom! And you're right 1:69 is pretty darn good all things considered!! {HUGS}

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    1. Thanks, Chris. I really love how the linkup has already connected me with so many kindhearted people.

      I sure appreciate your kind words. :)

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  15. Hello there from TALU! Ohh I sure can imagine a mother's heart ache when they see their children suffering for whatever conditions. I am sure if you only could take his seizure and suffer yourself, you will do it.. but then, from the bottom of my heart, I wish the 69 seizure free days will become even longer that you do not have to think about it at all. I wish that you will always have a strong heart to bear all the circumstances time permits to happen. I hope Lennon will be completely free from it.. sending you lots of positive energy!

    cheers!

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    1. Thank you MariaAna, you are so right. I would take them myself in a second if I could. Thank you for your well-wishes. I hope our seizure-free streak will continue. :)

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  16. Way to go mom! I bet the next stretch will be 70 days, then 82, then 103...
    My son was very asthmatic as a child and we used a controlled diet as well as a controlled environment to "cure" him of it. Now at 32, he doesn't suffer any more attacks.
    Here's hoping for loads of 1-69 days in your's and your little boy's world.
    Found you thru TALU :)

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  17. That's very encouraging to hear! Thanks Veronica. I hope so, too.

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