Category Archives: Living with epilepsy

No Use Crying Over Spilt Milk

Yes, we had some milk spillage tonight, and no, that is not a yoga pose or a new form of child punishment. I mean come on folks, ain’t no thang in this house — especially on a night like this. I was so calm when I heard the telling “oops” from behind me. But honestly, how could I yell, or even get exasperated and scold when I was the distant one expecting my six year old to pour his own milk. And that’s when I realized on a seizure night everything is different.

We all assume different personas as we cope and grasp at anything that can ground us. My son becomes super helpful and responsible. (He is good anyway,) but he starts buzzing around trying to do anything that makes us all feel better. Continue reading No Use Crying Over Spilt Milk

Bring on the Research! Happy for ALS

I am so happy all this attention for ALS has come from an accidental, viral social media game. It means (for the most part) people are open to learning new things and that we can find the good in people. It’s also an impressive example that good can come out of my beloved digital world. I am equally very excited for everyone who suffers from this disease. This new surge of money will mean research and then answers, and that can mean new ideas and hope. Again, I am SO GLAD for this cause. I don’t want the fun to end! We are just now getting tapped to do ours. (More proof of the lasting effect of the “trickle-down” effect). And of course, I felt the need to explain how we are putting our spin on the challenge. Naturally, our cause is epilepsy and I think that’s ok. (Click photo to watch video)

OUR OVERDUE ICE BUCKET CHALLENGE – click to view video

I don’t want this to seem like I’m jealous or greedy, because I get it, not everyone can give to every charity out there. Not everyone can even make time to do a little something for a few charities. But everyone CAN become more educated on as many issues as possible. A better understanding of how others live in the most challenging situations can be a great way to grow and become a more compassionate, more forgiving, more loving person. You wouldn’t believe what it can do to you when you meet someone who’s trapped in a different world.

I could never imagine how it must feel to live with ALS. I really don’t know how to show my compassion and sorrow for their struggles. But I DO know what it’s like to live with something that no one can understand, that has very little research. Epilepsy is many times referred to as one of the silent suffering illnesses because you can appear totally normal, so no one suspects anything is wrong with you. As opposed to the physically debilitating ones, people don’t stop to help because they don’t know you might need it.

And that’s why I’m so happy for ALS. We all need more compassionate people. So if even 10% of people who have done this chilling challenge are reading up on the disease, then hooray. The next time they see someone in need, hopefully they’ll make eye contact, hold open a door — maybe they can make a change.

Because in both our cases, the need for more research is a painful reality. And I believe research for one cause could mean advances for us all.

A Successful Day in our Special Needs World

Wow. Feels so good and yet it’s so simple. When we started speech therapy a month ago we discussed her left brain limitations and the therapist suggested we start with right brain communication. Makes sense to me!

So that means musical/sounds verses words and reading. She also is somewhat limited by her fine motor skills so signing hasn’t gone very far yet. Enter pictures! We use cards at therapy to see what we are talking about and associate the sound with the object. Cow says moo kind of thing.

So we made a book of pictures of things from around the house. We’ve had some success with milk and puppy (her blanket).

Continue reading A Successful Day in our Special Needs World

My Army of Oils

Reese had a rough week after the adenoids surgery. Don’t think we realized how much stress it would be on her system. They sent us home with the post-op instructions (of which there is NONE, really), and said it’s normal to run a low-grade fever. Yeah, except it’s not OK for Reese.

So with my hours of sitting around with her last week, I started to think how I needed to explain all this to Davis if he asked. Sometimes it’s the easiest way to grasp something anyway, so here you go.

We all have army men inside us fighting to keep us healthy. Some of the meds Reese takes are making her weak. If she gets sick or in this case if her body is hurt, her little army men aren’t strong enough to help her feel better because of the medicines.

Continue reading My Army of Oils

Under Control: A Reese Update

Control is not something I feel I have much of these days. It takes so much for us to just maintain a normal routine, and that’s mostly out of our hands, too. It depends on who is sleeping well and who is hungry and if I don’t get away when Reese is sleeping, then how do we juggle things like groceries and making dinner, because she is my shadow. All. The. Time. It’s sweet. I love it so much. Having been away at the office five days a week for so much of her first two years, there was always that worry I wasn’t with her enough. (I think it’s safe to say she’s not holding any grudges.) So I think if you take all of her needs and you throw in our free-style rapping, ninja-loving, super-energetic wild man who never, ever takes a break. Ever. And yeah, it’s kind of just crazy all the time around here.

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And yet, when I start to feel our routine, (ok, so it’s more of a small town’s train schedule that is written on paper, but hardly ever kept, because of the sheep stuck on the tracks or the sleepy old driver. Routine might be a little too strong for us.) Still, when I feel it coming back into focus, I do almost have a sense that we are managing all this crazy.

Continue reading Under Control: A Reese Update

Our Little Exploradora

Snapped these when I found her in the corner of forgotten toys. Weeks ago I stacked up some odds and ends behind the couch and she managed to wedge herself in here between the pirate ship and the monster truck.

I figure this tough little girl is bound for a tomboy future, and entitled to just about anything else she wants, too. But it’s a bigger deal than just being a toddler… Continue reading Our Little Exploradora

Pointer Fingers and Personal Connections

It’s been since the last surgery that we noticed Reese pulling out that left pointer finger. It’s one of the many things we take for granted as parents. Your child just figured it out, naturally. One day they can separate their finger from their hand and voila! They can manipulate things. Reese has been sneaky, clever really, in how she has gotten around her limitation. But now she has achieved a new milestone because therapy saw the repeated use of that finger and that means it’s no longer an accident. Add that to all her intentional eye contact and expressive nonverbal communication and we have had a monumental two weeks. Hooray!

Continue reading Pointer Fingers and Personal Connections

Get Out Your Pencils!

It’s been a good week. Super hectic. Crazy, really. But, still great progress for Reese, so it’s a winner in my book. 

To be brief, Reese has shown some real mental strength and focus this week. It’s an amazing feeling to witness her little breakthroughs — lots of pointer finger work with the left hand, length of attention has expanded, deep personal connecting, and a little bitty step in advanced reasoning. 

On top of all that, we’ve grown! It’s hard to tell in pictures just how small she is I think. You probably forget, like most people, that she is nearly 2.5 years old. She looks like a small 12 month old.

  • She weighs 21 pounds now, (last summer she was a beefy 26), here’s hoping she plateaus and doesn’t lose any more.
  • We’ve moved up a shoe size, officially in toddler shoes now, and not infant soft-soled ones. 
  • And my favorite!!! After standing at 29 inches tiny for 15 months, she’s tacked on two, TWO, inches! Time to mark the walls. This girl is going to wear out our pencils.

This is presumably because we’re down to a very small dose of steroids allowing her body to start behaving normally and maybe realizing it needs to kick it into gear and start taking care of her. 

And I have to share, we had a super great wrap up to our therapies today. She communicated her need for water using our picture book we have made. She might as well have won a Gold Medal in my mind! Thrilling!! She also is grasping “cause and effect” more and more. She pushed buttons on a book with sound effects. This is an imperative skill to get to understanding things like “NO.”

But above all, she is just connecting and showing her sweet little self to everyone she is with. I know they feel it, too. Her expressions show this amazing appreciation and love in her eyes, and I know we all can’t wait to see what she has to say when she’s ready. 

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I was trying to see how red her hair is in the sunset, but ended up getting a straight on shot of the scar. I hate how it looks like the side of a baseball with the stitches in the perfect curve. #epilepsywarrior #brainsurgery

Video of our Happy Girl

Happy girl. At least for a couple seconds. Then she started whining to get down. We get 10-12 min in the high chair these days before she is just done.

It was still a nice dinner, she was in a chatty mood. Gave Daddy a few special looks, too. Of course I wasn’t fast enough to catch her sounds.