Tag Archives: epilepsyawareness

6 Reminders for Families Learning to Live with Epilepsy

As part of our commitment to sharing about epilepsy every November, we are making a video this year. There was too much info to fit and this is something I thought might be a good blog list.

Our list of reminders for families first getting accustomed to fighting this battle.

1.  Face the monsters. Don’t be afraid to let others see epilepsy. It’s hard, but it’s also a powerful way to get people to understand you need their support. A very brave woman has a TED talk about how we each have a closet we are afraid to come out of. I think as parents we feel vulnerable opening up to others because it feels like we’re admitting we’ve failed as parents, because we can’t fix this problem without help. Don’t be afraid.

Continue reading 6 Reminders for Families Learning to Live with Epilepsy

For My Lovebug – it’s November

Excerpt from A Warrior’s Tale, a poem From my blog. For #mylovebug For #eftxphotochallenge #day13 #love #epilepsyawareness #mypoem

Excerpt from A Warrior’s Tale, a poem From my blog. For #mylovebug For #eftxphotochallenge #day13 #love #epilepsyawareness #mypoem #okwithchange via Instagram http://ift.tt/1pVACfk

An “I Believe” Kind of Day

A little on the wrists because I #Believe we are going to have a good dr appt today. No fussing, good conversation & more knowledge #epilepsyawareness #okwithchange #essentialoils

One Picture to Capture It All

I think it’s been hard for me to share this image because it makes it real and permanent. And even though we know we’ve done the right thing, there’s this feeling — call it parent peer pressure maybe? — that people won’t be able to understand how we could let them do this to her brain. And then of course there’s also the part that Reese hates me for sharing all this with the world, because she wants to forget it ever happened. I’ve told myself if she can actually do that, then it means we’ve succeeded. This whole thing can then become a memory captured in digital outerspace, and she and I will have a virtual (and a very real) BURNING party to destroy all the evidence, if that’s what she wants. 

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The truth is Bryan and I admittedly find the science behind all this fascinating. We’re geeks. And when the neurosurgeon sits down to walk you through the images like this and is almost giddy at the success and the quality of the imagery, you can’t help but kind of follow him into the nerdy world of studying brains and find yourself in awe of what technology has enabled here. Not to mention how incredibly smart everyone is to figure all this out. 

So now to the image — if you’re curious enough to zoom in and see details, on the far left you see a scan from the top (two white balls are eye sockets). Scans are reversed, so the dark empty space on the right is actually her left lobe where they removed a good 5-6 cm of unhealthy brain tissue. We will find out more about what was wrong with those cells in a couple weeks when a biopsy report comes back. From what we understand the space will even out with spinal fluid and everything keeps on living in peace. 

And peaceful she is. She has slept allllllll day. We’ve had a few moments where she is awake long enough to take water, eat a little applesauce, or just cry to let us know she IS in fact aware of all the fussing we are doing. She hasn’t sat up or really done anything physical, until of course we rolled her in the wagon 100 yards to the surgical recovery floor. She is still being monitored through blood work ups and lots of nurses waving flash lights in her super swollen-shut eyes.  Tomorrow is another day and we shall see if she feels ready for trying something different. 

Hope everyone is able to sleep as well as she is. Even me. 

The unsung heroes. AKA The spoilers. These doting grandparents show so much more patience than Bryan and I. And equal parts stubbornness and love about not moving from their post, or leaving us, feeding us, you name it. We are so lucky to have them as part of the army supporting our little warrior.

It’s time!

Thank you all. Trying to fall asleep and just thought i would share we have had a wonderful family weekend and I think Davis is in a good place. As good as he can be, considering. But if you see him this week, don’t be afraid to give him a hug. 🙂

Our bags are packed, along with snacks and toys and towels, because we are pros at this now. We know when we will need full toiletries vs just the bare essentials for the first 24hrs since ICU is kind of a mess to live in. We know kid-sized towels just don’t cut it and we know hospital air is like being on a plane. We have packed the extra dry skin lotion.

As for the sleeping princess, she has been cleaned and hopefully fed enough to last through the waiting period between 4-7 in the morning ( how long she will be awake without getting her milk until they take her back for surgery). And she has been kissed, a lot.

I know these lips won’t change and these sweet fingers aren’t effected. But it’s still scary. Like taking a piece of her brain actually could make her disappear from me. And maybe it does change who she is a little. Maybe it changes things, where maybe she will be able to learn and some day talk. But that doesn’t change who she is — a fierce, amazing little girl with a sweet and silly little personality bottled up inside. I try to not obsess over what’s lost, as my wise grandmother has reminded me. But stay focused on all the new good things that are coming.

And finally, we’ve written our letter to her. An apology, a love letter, an encouraging word — to be saved for a day when she needs it many years from now. We have no way of knowing what this decision does for her whole life, but we are holding on to our trust in the doctors that it’s going to be better. It has to be. Our love for this girl, like every parent’s, takes our breath away. It’s suffocating when you can’t fix them. So here we are doing the only thing we know how to make sure we save our baby, no matter how scary it is.

Thank you all for being there. You make us smile when we think there is no reason left to try. We really, really appreciate it!

She’s On the Move

And now for the real fun! As she gets her walking legs more and more, she has started to outsmart us and it’s such a thrill to see her figure things out. Our gates don’t hold, she is always out the door before we remember to shut it, and no cabinet is safe. We find her in the strangest places — the closet, the laundry room, trying to climb in the toy box… It’s all new territory for this family.

Of course this comes with challenges. Most toddlers exploring like this also know what “No” means and have a grasp on what mommy and daddy don’t like. This girl is still oblivious. That or she has the best damn poker face on the planet. We know it means we have to be extra vigilant about her safety since she doesn’t understand the dangers around her. And of course that’s a big responsibility for Davis, too.

She’s also solving new problems. This is a great thing for Mom, Dad and Davis, who all love a good puzzle. A quick list here for my memory later:
– putting lids/tops on things
– a few new facial expressions, almost playing coy a couple times
– lifting leg to climb up on stuff
– eating from a fork (kind of)
– biting more crunchy foods — had first real rice cake today!!!
– and potentially the biggest in a while…

She is showing signs of understanding stacking! Pictures to come next time I catch her. But she is definitely close to mastering another big fine motor/cognitive development!

And all this despite having a seizure Saturday morning. Just one lonely episode. Looked the same as always, and she slept it off. But after an hour she sat up, looked at me with purpose in her big eyes and then stood up. Couldn’t believe it. Normally she would be so lethargic and wobbly. We’ve been on edge all weekend, but so far so good. Who knows why, but we will take it.

Twenty-two days to surgery and counting.

My Unhealthy Photo Obsession, My Messy Beautiful

I confess snapping photos has become an unhealthy obsession. Yes, I’m the typical mom who loves to share photos of her kids, but there’s a catch. My messy, beautiful life has me seeing every moment as a memory I don’t want to miss recording. For the past year, I’ve worried every smile, every silly thing, every step could be her last. So I don’t want to miss any of it. I scheduled a photo shoot for her February birthday, because it was before the two-part craniotomy. It makes sense to do a photo pre-scar. Obviously! And now it’s between surgeries and I am thinking of doing it again! What the hell – let’s photo the staples for posterity. She’s smiling and it’s bluebonnet season! Why not, right?!

But people, It’s only been two months since she turned two! Pretty sure you’re supposed to do photo shoots once or twice a year, max. My husband rolls his eyes and holds tight to his wallet. I tell him, “But, her face has changed. You can see her sparkly eyes better as her cheeks have diminished. And it feels like something new to capture.” Clearly, I have a problem.

I have a compulsiveness to document it all, just in case. In case that awful dark thought ever came true. The thought that tortures me; a gargoyle perched in the corner of my mind stalking and paralyzing me from just being normal. Even if a seizure doesn’t take her away, we always face the chance she wouldn’t fully recover. I worry we are risking losing more than gaining. And then I think, is this state she is in now really so bad? We want her to at least come back to this  But it’s not forever. We’re in constant limbo until the next seizure hits. And now with surgery looming again, it’s just as big a fear. So I quickly snap again.

I take pictures of her 20 times a day. Maybe more? I’m not sure. Then I look back and if the expression is one I’ve already captured, I’ll delete it to make room for more. Or maybe save it for a few weeks to be sure I don’t need it. Or if I already have one in that outfit, I figure it will get confused if I jumble too many moments together in the same ensemble. But just in case, I hold on to most of them. Just. In. Case.

Looking for the beautiful bright side to this ginormous mess of photos I’ve created, I do have an amazing collection to work with. I have a growing montage on my bedroom wall. (Also not a cheap compulsion.) I have spent numerous hours agonizing over how to build the self-directed photo books just right. I obsess over how to store the images, too. I’ve researched and tested several options. I don’t trust any one system. So I use them all. My digital memories are in the cloud in two separate file storing tools, plus on Snapfish. Plus, I have a copy on the hard drive. I even bought this new Mac so I could make sure to create DVD movies of everything as another back up. You could say it’s becoming a sickness.

Another happy point means I am by far going to make it easy for my kids to have plenty of photos of their childhood. The grandparents aren’t hurting for ways to cover the fridges or fill their frames, either.

And yes, there are now many more pictures of the second kid than the first. Normally I think it’s the reverse. I have huge mommy guilt for focusing on her more. But in my defense, he isn’t changing as often now that he is older. AND more importantly, he never sits still for the camera. This is what most of my shots look like.

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So yes his squirmy pants and silly faces make me extremely sentimental of their moments together and I keep snapping away whenever I can. It may be hard to believe, but I only share a fraction of what I really take. My phone is always full. Videos, too.  I swear I do try to fight the need, sometimes, ok occasionally. I force myself to put the phone down and enjoy the moment. Then she smiles or makes a great face and I’m snatching it up again like a mouse greedily grabbing the cheese from the trap. I am definitely nearing psycho.image

It’s hard to imagine a time where I could let go and not feel this need. I hope it comes, soon, sometime after this surgery. Hopefully it’s the last of its kind and then this is all behind us. And then, maybe, I will resort to normal crazy mamma status with the regular intervals of collages and candid moments. But please forgive me now, while I suffer through this little OCD phase.

Time to clear out my camera again.

This essay and I are part of the Messy, Beautiful Warrior Project — To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!

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My boys reunited. Can’t believe we went a week not seeing this sweet boy! They both look good in purple, don’t they? 🙂 #wearpurple #epilepsyawareness

The Stomp Brigade representin’ for our #epilepsywarrior Reese! #stompforreese #strollwithme #epilepsyawareness #fortworthzoo