Category Archives: Living with epilepsy

I Am Here Today

This will be my first open letter to you, my love bug. A dear friend suggested I leave you my thoughts while they are fresh and have the conversations I imagine we would have if you could tell me what you are thinking. And with that in mind, I couldn’t just post this video today, I had to break it down.

Reese, you are amazing to me.  I believe you deserve to see this progress, when you’ve started reading, you will be able to celebrate how far you’ve come. Because it’s all YOU, baby! 

Your progress the past 6 months has been overwhelming and there just hasn’t been a way to keep up with documenting it. You have to watch this 3-4 times and each time let me point something different out to you, because only your dad and I, and your teachers can see it. 

First, Watch your demeanor and your attention. 

  • Sitting, following instructions and looking where your teacher is guiding you. 
  • You are calm and not fidgety.
  • You are aware of your friends sitting around you. 
  • You followed through on the whole task… meaning you didn’t get distracted. 
  • Watch your little dance – it’s become your way of showing you are paying attention. 

Now observe your clothes. Today I was feeling quirky, so we both have our best funky outfits on. You can thank me later for your sense of individual style. But it’s more than that…

  • You have a necklace on. Historically you have taken these off. They bother your neck. Today you’re cool with it. Progress.
  • These leggings are almost too small, but I had to get them on and then cover the booty up with shorts. And you were ok with that, too. And then there’s one leg bunched up — you did that on purpose. 
  • You put those black boots on by yourself this morning. Socks, too. A HUGE win! (It’s a special word, highly overused these days). You pulled them open, slid in the foot, and zipped each boot up. And you did all this without really looking at your hands and what you were doing. It’s easier for you to focus when your eyes aren’t taking in so much information. 

Now look at your physical actions. 

  • You’re sitting cross-legged. Ok, first, you’re sitting. No grown up behind you, no special Elmo fuzzy chair any more. You are equal to your friends. 
  • Your teacher insists on you crossing your legs. This is great for coordination, it also keeps you from rocking. But you don’t need to rock when you’re engaged and comfortable. 
  • Watch your head turn to each child when she says their name. 
  • Look how you dance your head and move your feet with purpose. You have gained so much physical control and awareness. 
  • Your hands sometimes are your biggest challenge but you grab our card and know exactly what to do with it. 

You have become a full participant in circle time and I honestly didn’t know if it was posssible two years ago. You belong here and you are so loved! And I know everyone’s belief in you spurs you forward, but this is definitely all your doing. 

So wherever you are when you read this I want you to hold your head a little higher, and smile big, because you inspire people. You are so deserving of so much admiration.

And that is why I am here today, with you ever day.  You inspire me. I love you. We all do. 

Learning how to measure  time 

We live in a world of dates, deadlines and milestones. I catch myself measuring each special moment and holiday in reference to “last year” or the “last time.” The good news is we are beyond grateful for having the chance to say these words. We loved those moments like they might really be our last. But I want to push myself beyond the milestones and monthly markers and yet I find it’s much harder than I thought.

I can’t decide why and I’m not sure there is one single answer. Maybe it’s partly because we were trapped in a time warp for two years and it feels unnatural to actually move forward. But it’s also maybe because we got stuck in a safe place and staying in that rut is easier than starting fresh, even when the rut includes the scary memories always haunting us like silent ghosts.

As I have reviewed this weekend’s photos I am reminded of our pumpkin photos last year, how we felt, what we worried about and I wonder if maybe next year it will be too far away to keep up the comparison. But I also don’t want to ever forget, because this fight never stops for our little warrior nor for hundreds of thousands of others.

It’s almost November, our month to share, so I’ve decided it’s not all bad to keep reflecting on the crazy moments. It keeps us vigil and empathetic and these qualities are what I am most thankful for learning through our journey. It’s about the baby steps we keep taking and making sure we keep an open mind for the change we face.

We celebrate where we are and we want to make sure we spread the awareness so there will be many other stories like ours.

Progress every day 

It feels like as good a time as any to put it out there. Things are pretty good these days. I still hold my breath every time she bends over or stares into space, but our little warrior defies the inevitable. And it is most likely going to happen again, so we will try not to get too high on life because I fear the fall will be much worse.

So the update aside from all things good is we have been checking on her body to see if it’s as good inside as it looks outside. Today was a new test for us. She had a stimulant test run to check out her body’s natural response because the steroid our body makes (partially adrenaline) is created when we are excited and stimulated the same as when we are sick or hurt. This will tell us if her immune system is back on track after the long-term steroid use.

Personal note: I always think I can be supermom and handle her by myself. I say how on earth can I be so spoiled to always have someone helping me. It’s just one kid! My sister manages 4 by herself many days!  I have also met all these strong moms with medically-complex children and they do it seemingly with ease. And yet, after 2 hours of trying to wrangle her, sooth her, and meet her needs, I’m ready for a nap and some wine. And that’s what reminded me that I really don’t care about how all the other supermoms do it.

Child Life provides toys
trying to find a way out of the room

The highlight of the trip was Reese’s first experience with Rover. Check out how calming this thing is for her. She loved the bubbles and the mirror combined. She was hugging it; she couldn’t seem to find how else to express her happy feelings.

This was just further proof that Cook Children’s is a great place for us and we are so grateful we have them. Plus, we saw a familiar face from the Child Life group who has helped us from the beginning and she hardly recognized Reese. But that “family” feeling of knowing people and having them know us is so comforting. It’s my favorite part as the mom who probably needs that reassurance now and again that we are making progress.

hugging Rover

[finally got a very late nap in
And today, despite the stress of worrying about her and the extra prick because the IV blew (of course it did), and having used the one diaper right BEFORE she decided to have an unexpected poop, oh and the fact that I left the urgent grocery run of milk and diapers IN the car where they sat for the two-hour dr visit, I’d say it feels like we have lots of good days ahead. So that is most definitely the kind of progress we want.

This Special Road: Giving to Others

I am repeatedly blown away by people’s support for our journey. Both dear friends and complete strangers praise our strength and give selflessly of their love. I admit it helps even if only for a second to know someone is recognizing it’s not an easy road.

But here’s the other side. I am reminded daily that we are so far away from being the worst of cases. And while our daily worries and struggles are exhausting, we have a more often than not healthy child, TWO actually! And we cannot be more thankful for anything on this Earth.

So, over the holidays, while I couldn’t make time to go give to others the way I wanted to, I did spend time filling up my heart with stories of other courageous mommies and their beautiful families. Theirs are the inspiring kind. The truly heart breaking and breathtaking that I admire now in a way I couldn’t appreciate before.

Continue reading This Special Road: Giving to Others

One Month and Counting…

It’s been a long haul… We try and take it a day at a time, but every once in a while we hold our breath and put these milestones out there defying superstitions to shut us down. We will keep counting silently for as long as it takes. #epilepsywarrior #onemonth #seizurefree #okwithchange #wearpurple via Instagram

A Mighty Moment for Accepting Change

I didn’t necessarily need a cry today, but I sure needed the smile that came with this great blog post. I see the world differently now with all our change, and I love this beautiful moment in time captured by a mom, a juggler, maybe an over-thinker, like me.

TheMighty-TraderJoes has just opened my eyes to a new side to our world. I am very grateful to have time to be slowly accepting and learning about what Reese’s world means for us as a family. We have been able to take the past six months and become ok with the change we are facing.

We don’t have a status or a diagnosis that labels her, yet. But we are embracing the opportunities and the knowledge that lies within the special needs community, especially for the autistic spectrum. As a non-verbal almost three-year-old, Reese is behind. No question. There IS a question about why, so until we know for sure, we are coming at the problem from all angles, as always. 🙂 Continue reading A Mighty Moment for Accepting Change

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

Quote from Epilepsy month

#day17 #inspiration #quote #moveforward #okwithchange #eftxphotochallenge #dailyreminder #babysteps via Instagram

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

Reflections on the playground
Preschool playground. All I can think about is germs.

I had to come add more musings to this one. It’s been a rough few weeks, and not because of any health issues. At least not directly. It’s more the emotional toll all the constant change has taken on us as a family. It’s hard to explain how much of a weight hangs over this house, I think we all feel it and we’re so used to this heaviness that we forget it’s not supposed to be there. It’s our normal. But it’s still a huge shadow over life.

So here’s the deal. We are now in the throws of making the second biggest decision for Reese. Medical being first, but now her education has become top priority. As always we have choices and it’s a long process, so it’s not like there is anything happening tomorrow, but it FEELS like it. Because the holidays will come and time will leap forward while I sleep and all of a sudden it will be her third birthday in February.

That’s right, despite her waif-ish frame, and her living life like a 15 month old, our BABY girl, will be “eligible” (it’s a new fun state-appointed word), for public school because of her physical and mental disabilities. Yikes. I hate that word. But putting all the stigma and the euphemisms aside, that’s what we are dealing with. That’s FIVE half days a week away from home. And that’s overnight! So, of course this crazy dragonmom doesn’t just sit around and wait for change, she jumps off the cliff screaming like bloody hell into the wind. And THAT is why, it has become THE conversation for me. I refuse to give up control of our options, so the more time, the better. That’s why overnight we’ve started entertaining the idea of two days a week in private preschool now, to ease into the real deal come February. Yes, even if that means we drag out the stress of it all, too, I think.

So I am taking a moment to check my perspective.  While my precious, completely unaware angel lies here, I see her little feet are bigger and I know that she now snuggles up into my side like a little person and not on my chest like a baby, but I don’t think I am ready for this change. No one knows what she needs outside of this house. We are asking strangers to learn her non-verbal, non-communicative language and be ready and waiting to meet her challenges when she serves them up. I don’t think we can ask others to do this. We are too hard on ourselves to be responsible for all that she needs or does that impacts others. I cringe at the thought of asking others to own this with us.

We are also hard on the world for there not being an easier way to accept Reese into its crazy ways. There’s no easy way to say your head hurts, or that you’re scared, when you don’t even realize you feel this way. Our table-loving, sitting-still school society is not going to handle her busy feet very well. And um yeah, there’s also those seizures. In a hurricane of 8 toddlers, my silent baby will have no way to call for help, and that makes it hard for me to breath.

I will be stressing about these decisions for a while I think, and I am not going to be letting go of how heavy our hearts are. But as always, we are going to find a way to handle this change and not let it handle us. And that is all the perspective I can muster right now, because from here these toes still look pretty little to me.