so much to love

He has the most beautiful smile. Hands down.
It’s not so much the curve of the lips as it is the soul radiating from his eyes. Coupled with those juicy lips.
I see it often. The soulful smile. But I never get enough.

Lately…he’s had this little pre-seizure cluster habit. Of scooching over. Sitting as close to my lap as he can wriggle. Sometimes it’s not accessible cause I’m working on a project or doing something else. But he’ll rest his little arm on my legs. Look up. And melt me…while never breaking his gaze. With those beautiful eyes. And kissable lips.
How I love that smile. And those eyes. Belonging to that boy. Who is mine.

There is just so much to love.

I love his sense of humor.

I am amazed that he finds so much to smile & laugh about as he lives through each seizure saturated day. And his days are saturated. But he fights his monster in silence. As many times his seizure war goes unnoticed by the world around him. While I fight the urge to rage. And scream…how can you not see that! While he…the suffering one…finds reasons to giggle. Sometimes even in the midst of the battle.

Of course…Bristel & Toby crack him up without trying. They run by…he laughs. They call his name…he laughs. Toby makes funny faces…he laughs. Bristel blows a raspberry…he’s in stitches. There is no doubt…Toby & Bristel make his world complete.

He laughs at me too. We have our little giggle games we like to play. He loves peek-a-boo. Especially when I run and hide in another room…and pop out to surprise him. He loves when I tease him with his food. And throw soft toys at him. And tickle him. And run away…he adores the chase.

I love that about him. He’s an easy laugh.

There is just so much joy about him to love. It drips from his soul.


I love the quirky little Trevy things he does.
The way he snuggles his blankie when he’s tired.

Or like his funky dance when he’s happy. It’s SO weird…but cute. And lovable!

And the way he cocks his little hips. Especially cute during bath time. Cause I get to pinch the cute boot!

Ohhhhh…and the sensory seeking stuff. Rubbing carpets. Pulling grass. Splashing in water. Spilling sand. It’s just SO cute. He gets very intense. Filling those sensory cravings is serious business you know. I especially love when he leans in super close to stare at the sand…or water…or grass. Like he’s studying for an exam. I often wish I could read his mind…because it’s obvious he is thinking about something. He just has no verbal means of expressing it.

A couple times recently he’s stroked my face. In such a curious loving manner that butterflies went dizzy in my tummy. To have such a beautiful soul rub my cheek so gently. And gaze into my eyes so unnervingly. Like he’s convinced…I’m the beautiful one. He couldn’t be more mistaken. It’s only happened a couple of times. But those moments were so deeply beautiful that my eyes are misting right now.

I feel like my heart might explode. There is just so much to love about him.


All these loveable little things about him have been tumbling round my heart. I’ve caught myself studying him more intensely. Hugging him more passionately. Forcing kisses on him more frequently. As the days keep marching forward. Towards that day. Emotionally I’ve been a wreck. Weepy. And cranky. And clingy. Reclusive. Sad. Unsure. A mess. Completely undone.

I keep wondering what if we’re making a mistake?

What if we’re trying to play God?

And what if in doing so…he disappears?

What if the seizure monster gets the last laugh. And wins after all. Because in slaying the beast…the beauty that is Trevy is removed as well?

What if the hated seizures are what makes him so beautiful?


In my saner moments…I think to myself that I should ask my doctor about anti-anxiety meds. Because clearly the stress is getting to me. Or that every parent that has walked this road had these thoughts.

Jonathan thinks I’m nuts. He reminds me how freaked out I was to use ACTH that first time. And with each subsequent medicine after. But how we had agreed that we would always do whatever options were available that offered Trevor the most hope. And he’s right. But I remind him that he knew I was a loopy before he kissed the bride.


But honestly? It just feels so heavy. So very heavy. And so freaking scary.

I have put SO much hope into this nightmare miracle. Like somehow this is the answer. The happy ending.

But in my bones I know this is really just the beginning. Trevy is very very young. And we have a looooong and still very uncertain road ahead of us.

That might actually be okay…if I could only know that it would be with him. The him I have today. The him that I have spent two and a half years falling head over heels in love with.

And sometimes I can’t help thinking…

the trouble with so much to love…

is that it means…

there’s so much to lose…


**editor’s note**

I’m feeling pensive today. And clearly over emotional. But I want to make sure there is no misunderstanding…

I am SO very thankful for the other families. The brain surgery veterns. Who have had the courage to gut wrenchingly honestly share their stories.

Because it gives me a compass. And some comfort. And some concern. But at least I know that I am not alone. We are not alone. Somehow that makes it a teensie bit easier.

Thank you to those who have reached out to me. It is truly a support. I know it may seem counter-intuitive…but even the sad & scary is helping to hold a very fragile heart (or perhaps head) together. Thank you for being a sounding board. A question fielder. Comment leaver. An email answerer. For giving of yourselves by following our journey. A deep heart felt thank you…


11 thoughts on “so much to love

  1. No Editor's Note needed. These are difficult times, and there is no magic date waiting after surgery where you go 'AHA! This is what we were after!' At least, that has been the experience I have had and witnessed through the other blogs.

    So yeah, it might get harder before it gets easier. We seem to have traded a seizure free boy for one full of anger and rage and pain and frustration, peppered in with moments where I THINK it is the same child I used to have.

    But I keep telling myself it will pass, telling myself that there are no seizures. That's part of the journey, part of the beauty AND the tragedy of the surgery. It is just one step on a longer journey, one we have all been on for so long, and some of us longer than others.

    You'll get through, you have to. But meds? Yeah…look into it. You WILL NOT REGRET THAT. I wish I had about two weeks prior. Try some Cymbalta or something, that is a great, low side effect anti-anxiety med that doesn't have the addictive effects as Xanax. But get on it soon, takes a week or so to start making a difference.

  2. Danielle,
    I could feel the heavyness in your heart and all the worry and angst you are feeling.

    In some ways, I wish I knew what you were goig through, so I could help guide you through it, but I have not been there and my journey still wouldn't be Just like yours. But know that I will be along side you as you go through all of this, and send prayers and hugs to you all.

    I'm thinking some sort of anxiety meds will help a bunch. They will probably help keep all of those “what if” thoughts out of your mind, so you can focus on the now…the moments with the smiles and giggles.

    Biggest hugs coming your way 🙂

  3. “What if the hated seizures are what makes him so beautiful?”

    Okay, if I could completely bash that thought, I would. Relative to Dr. C Rockstar, I know squat about the brain. Relative to 99% of the remainder of the population, I know a lot more.

    Here's the thing, neurons connect in ways that are so complicated, there's always a risk that some of the beautiful neurons are connected to the monster. But it is NOT the monster neurons that make him beautiful.

    Now to you, you and Trev are attached to my daily prayer list. If your health is in real jeopardy – harmful anxiety – J will help you determine whether it's that or just loopy you – I hope you will reach out for help – to IRL professionals.

    One of my current lessons in life is the letting-go of ownership of our children – teens. With each passing day I more firmly believe, they have only been on loan to us – to do the best we can.

    From far away here, you seem to be doing the best you can. Pretty good. Who are you trying to please?

  4. I wish I could add some words of wisdom here, but I have so little to offer. I agree with the above comment. Trevy has been beautiful since the moment he was conceived. He might change, but that will never change. You are always going to love him as much as you do in this very moment. No matter what happens. I am praying for that to get you through whatever you come up against. I can only imagine how scary this is for you. You have every reason to be afraid and it seems like you are handling everything appropriatly, and still it may be a bit easier for you to keep things together if you do consider some anti anxiety medicine. You could probably scrape by without…but you shouldn't have to. Maybe it doesn't have to be quite this hard…I don't know, but it's worth a try. I know they have helped me out quite a bit. I take klonopin, which is kinda weird : ) But it helps a lot!
    Take care sweetie,


  5. Hey, girl…

    I can't even BEGIN to know how you are feeling just about now…I can only IMAGINE…And even then, I am sure I wouldn't get it right…

    As I read tonight, I felt like COLBY was getting ready for surgery….I can FEEL your anxiety…As much as an outsider can, of course……

    You know what hit me? You have helped Bennett's daddy SO much over these last months….Giving him wonderful and encouraging words…Now HE can help YOU! I LOVE that….Isn't life just remarkable?

    Check into the meds…Nothing wrong w/a low dose to get you through…I've been on something for some years now….It just helps even things out a bit….And you deserve to feel as best you can….

    I always pray for your precious family…


  6. Like Ken said…No Editor's Note needed. Because I wish I knew what I know now before Sophie went into surgery. I had no idea I would be dealing with these issues. It is like a roller coaster. The few days after surgery, she was gone. Her eyes were blank. But she slowly came back. Those were some deep, dark days. I talked about those on my blog. Then life was pure bliss for a few weeks after surgery…once we got home. Life felt perfect. She was seizure-free. We were home. She was slowly gaining her strength back. She was saying a lot of new words. Her eyes had a new sparkle to them. She was sweet and snuggly. Then the behavioral issues hit hard. I was lost. I didn't know how to deal. But you also have to take into consideration that I have a one year old and a newborn. I couldn't focus on Sophie like I needed to. Then school started and I felt some pressure lifted off of me. And I have to say, I feel like this weekend is ANOTHER TURNING POINT in this journey. She seemed a bit calmer. A bit more manageable. A bit more connected. It was just Sophie and I cuddled up in bed and we had a moment (you just inspired me to blog about it because this comment is already way too long). To sum this all up…Sophie is still Sophie. She is just Sophie times 100…and that includes the good and no so good behaviors.

    Your feelings are so VERY NORMAL for what is going on in your life. Anxiety is high. The days leading up to surgery, I felt like my entire life was crumbling around me. I know I e-mailed you a few times during all of that and that was still only the tip of the iceberg. Because, for me, it was so hard to put into words the emotions I was feeling. The thoughts that ran through my mind scared me.

    I love you. I am here for you. Anything you need, just let me know. I wish so bad that I could fly to see you. To sit down with you. To tell you all of this in person. I wish you could meet Sophie in person. To see how sweet and adorable she still is despite everything else that is going on. Because she gives the biggest, tightest hugs and it would just melt your heart.

  7. I think in all my “surgery is not the magic wand” posts I may have forgotten to mention something. Yes, we still live with seizures and yes we live with crazy nutty behaviors right now BUT we got our little girl back. Before the surgery we had glimpses into her. Little moments where she would look at me and my soul would light up. Little cuddles here and there. The girl who came home from the hospital with me didn't even want to cuddle but two weeks on she was all about affection. I see more of Emma in five minutes now than I did in a day before surgery. Thank you for your post because I was a bit down today and you reminded me how far we have come. I hope your journey is even better. No more seizures please!

    My baby who spent most of her time moaning during IS looked me in the eye last week, clenched her hand in and out as if to wave and said “ba ba” to me as I said bye bye on my way to work. She just about melted my heart away. That is our success story – small improvements where there was once no progress. All the best. You will get through this.

  8. Trust yourself. You are doing the right thing because you are facing this head on and fighting for Trevy.

    And yes, I'm on wellbutrin. There is nothing wrong with meds to help you too.

  9. Danielle,
    I can feel your anxiety…we felt the same way beforehand. Even after the surgery, we were asking ourselves…did we do the right thing? The child we brought home was not our child….but things did get better and he came back to us. He will always be your Trevy and he won't lose the sweetness and the beautiful eyes. It might hide for a little while, but it will return. I remember seeing our Trevor smile for the first time after surgery…it was over a week after and he was watching Angels in the made him laugh. It felt so good.

    We're with you on this journey…holding your hand from far away. Knowing that you and Jonathan, like all parents, have climbed mountains to help your child.


  10. So, I read this post several days ago, but with my heavy load here, I'm just getting to comment. I kept making a mental note to get back here.

    I'm not going to focus on the upcoming surgery. I know you're terrified, but I cannot fully appreciate that or give you any wise advice.

    I so wanted to tell you how beautiful this post was though. Jaw-dropping beautiful. Regardless of your fears or anxiety. It was almost like I was truly seeing into Trevor, yet never having met him. My heart exploded with a new love for your family.

    Seeing him through your eyes. And these very articulated emotions. One of the most special posts I've read.

    Love and hugs…


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