Tag Archives: dragonmom

Reflections on the playground

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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.

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Poem: A Portrait in a Prison

It’s in the time-stands-still moments I know you best.
A silken caress, a deep sigh of depression.
Mesmerizing eyes, faintly there.
A portrait in a prison.

It’s in the crush-my-heart moments I know you best.
A stinging grasp, a tormented cry of rage.
Piercing eyes desperately stare.
A dove in a cage.

It’s in the cotton candy moments I know you best.
The melting lips, a joyous gurgle of wonderland.
Sparkling eyes, reaching deeply.
A precious pearl in my hand.

It’s in these moments I’ve come to need you more, I believe.
I push away, I cringe.
I squeeze, I nurture, I breath.

Never would I be a million free birds,
But just one caged with you.
Nor do I dare loose my hands,
For a precious pearl awaits the blue.

Flying, falling, sinking, soaring,
We are yet to find the place to be free.
Cages and prisons and hands be damned.
Holding on I am, tightly for eternity.

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Helping Others

Made a special blend today for a new friend in need of some hormone help for her very young teenage daughter. Really hoping she feels better soon. I know just what it’s like to have a sick kid and feel completely helpless. I don’t want any parent to feel that way if I can help it! #parenting #dragonmom #naturalhealing #dropsofchange

A pillow for your precious head? If I must. (Note: first time she’s slept on the left side). #brainsurgery #epilepsywarrior #dragonmom

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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Warrior’s Tale

We all start pure, simply loving being loved.

Pummeled with life’s reality we are shocked, afraid to give up our name.
The cloak of innocence shreds with every whipping wind and painful flame.

Icy blindfolds, iron chest plates —
If only we did not discover our true fate?

Life, a fiery goblet, pours down our throats
Sweet memories burned into our souls.
Forever forged with choices, chances, hopes.
We carry our torches crafted from golden memories,
— yearning to find our way.

Damaged with every scar, we push on.
But who of the great warriors survives
without bruises, scratches, burns?
Fighting we are, for every chance at the light,
— to carry our torches another day.

We grow wiser with life’s reality, but no less hopeful.
We grow braver, but no less careful.

Love’s flame casts shadows on yesterday’s scars.
Untouchable memories now white hot as stars.

We are still loved and love on forever.

 

Copyright 2014 Carrie Mamantov, The Rugrat Project

Never got this posted yesterday. Luckily we still have today #purpleday.

Reese just had her dressings changed for the first time and they said she did surprisingly well. Better than some teenagers. To me she looks miserable. They don’t know that she isn’t a crier. They don’t realize that all of this stuff touching her head and wrapped on her hands is driving her nuts.

I can’t tell you how hard it is to not yell at people for touching her. It’s like when you have to countdown from 20 to not lose your temper at our kids… But so much worse. I can tell she is scared and she won’t let me touch her and it’s agonizing to feel so helpless.

Her face is starting to swell so you don’t want pictures now. I want everyone to have this beautiful face in their minds, and not be saddened by what we are seeing.

Thank you to all who are wearing purple! You’re wonderful! And when someone comments on that beautiful shirt please tell them it’s for epilepsy awareness.

Living a Cliche

I could start off how I am feeling with “it was the best of times, it was the worst of times” and I would arm wrestle Dickens on who has experienced worse. But that’s not all of it. We are living more than one cliche it seems.

I can’t think of any clever way of describing this feeling to you. I hate saying it’s an emotional roller coaster but I can’t help myself. We are literally living every wonderful moment seeing Reese grow and learn something new daily with a constant fear it’s her last coherent moment for a while.

A seizure can start with a flinching of a body part. In Reese’s case it’s normally her right arm and then the left almost at the same time. If you’ve ever held a sleeping child (especially a toddler who’s brain is recording everything they learned by practicing it while they sleep) you can imagine how holding a sleeping child who could seize at any moment is agonizing.

And it’s now that while I bask in the sweetness of cuddling her warm squishy body, her soft curls tickling my cheek; I am paralyzed with fear of our reality. We’ve been in a parent’s purgatory for months now, counting down to this week. The last days of her steroids. The first real days that we can expect to have the sudden need to call 911.

Don’t get me wrong. It’s been so amazing. Every giggle and babble and problem solved by this sweet girl is worth celebrating. All her therapists are so optimistic and pleased with her recent progress. It’s just all so fragile…

I have been the one expecting her to jump start this process on her own… But it means we have to lose her to get her back. It’s terrifying. We have to let go and watch her go into her post-seizure zombie state – spaced out and exhausted. Then we have to watch her fight her way back after two surgeries. We can’t pull her out if it. We just have to watch and cheer her on and hope she knows we are waiting for her to come out of the fog — ideally for the last time — and show everyone just how amazingly strong she is.

So we are down to the wire (there’s another one) and it could be at any moment. I’m afraid to sleep. Afraid to leave her. So very, very scared.

Thank you all for always listening and being supportive. You all have different ways of showing you care and I’m consistently touched and surprised by your generous shows of friendship.

We are prepared as we can be, and we promise to keep living every moment happily until the moment we have to hold our breath and wait for Reese to beat all of this.

You will know more when we know more.

Ready

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It’s all in the lines.
Skips, jumps, hills and mountains.
Nothing.
Everything.
Waves, even and steady.
Your breathing,
not your brain.

And my heart
it falls.
My lungs
lose air.
Frozen. Terrified. Ready.
Ready???
There is no such thing.
I fail you.
I’m not strong enough.
Crashing, reeling.
My emotions,
not the waves,
not you.

You are still sleeping,
Peaceful.
Ready.

 

copyright 2014: Carrie Mamantov, The Rugrat Project 

A kiss to build a dream on

First, I want to make sure anyone who is following our story and/or is new to epilepsy knows something. Millions of people live with this disease. Most likely Reese isn’t the first person you’ve come across. You just didn’t know it. Thousands and thousands of people live with this disease and find ways to manage a mostly normal life. It’s not always as scary as I’m sure we make it out to be. Epilepsy patients may have drug-induced side effects, or have other social anxiety issues, but medically, their status is manageable. That’s what the doctors told us when Reese was first diagnosed. And it makes sense, they don’t automatically assume the worst, so they tell you all the comforting things so you will stay calm and follow their guidance. 

It’s just that for Reese it hasn’t been manageable. She has a combination of factors putting her into a much smaller group. Not only is her condition not controllable with drugs (intractable epilepsy), we haven’t been able to pinpoint her issues to a specific spot in her brain. And because it’s not showing up through genetic testing, we can’t just accept that this is who she is. We believe, along with our doctors, she can get better, at least in part, be saved from this terrible place she is in. 

The surgery can sound scary though, and we still aren’t clear exactly on which option we are going to choose. It’s a lot to take in. I even created a Pinterest board to store all the things we read, or people send our way. http://www.pinterest.com/redcarrie/understanding-epilepsy/  Thank you to all, and please keep it coming. You never know when something strikes a chord with us or a doctor. 

Current Status

You see us having good days only because we depend on steroids to keep her brain under control. And unless you are a parent who remembers exactly what 18 months looks like, you wouldn’t realize how delayed Reese has become. I think for Bryan and myself, not knowing what her brain can process, what she can and cannot do, and what that means for her whole future is the hardest part. We see her functioning yes, but completely in her own world most of the time. We still aren’t sure she knows her name. And then of course, there is a scenario that the steroids create as much of the fog as they are helping ward off the seizures. 

Countdown to surgery

Steroids aren’t a permanent option anyway, so we are close to taking the big step to surgery. We still don’t have every detail of this process ironed out, but we are getting closer. 

Tomorrow, Davis will meet with the amazing counselor from the hospital to prep him for what it means for Reese to have brain surgery. Honestly, with Reese being so unaware of what’s going on my fears for her are different. And indescribable. Breathtaking in the worst possible way, actually. But for my son, I feel a worrisome pain because I don’t know what he will feel when he sees her wound and her hair all gone. He is extremely empathetic and protective. As first siblings go, I am familiar with the need to protect at all costs. And I just know it’s in him. So we will learn from an expert how to talk with him and to see if he shares any feelings with the counselor that he hasn’t unveiled to us yet. 

And I think just knowing we are getting closer to being prepped is soothing for me. We have been waiting and waiting to know what to decide, so I have put little pieces in place to feel like we are making progress. 

And it’s that progress that keeps us going. Tonight Reese intentionally kissed each of us good night (with a little coaxing). She had started doing this months ago and somewhere along the way it dropped. She doesn’t like you to get in her face, and so most of the time we don’t push it. But there was a sweetness in her eyes tonight and I could tell she wanted a little extra show of love. 

I think we have kind of gotten used to her not really looking at us or being totally alert. And so it stands out so much more when I see this sparkle in her eyes that tells me she is really in there — talking to me through these amazingly beautiful eyes — and I just can’t tell you how that feels. But that is THE reason we keep going. I live for that look. It’s in my dreams and hopefully after surgery we will get a lot more of it.