I have been pushing back the thoughts every time they try to invade. On purpose.

I don't want to think about it too much.

Because if I start dwelling...mulling. Inevitably that will lead to google-ing. And learning.

Than I run the risk of stumbling on information better left unknown. Until it's already been Lived through. Because it might destroy the fuzzy romantic picture I hold in my heart. Which always includes a swath of missing beautiful curls. Super heros in white holding swords. Shaped like scalpels. Bright lights. Sterile room. And the monster being skillfully sliced out of his brain. Slayed at last. Freeing the little prince. Which in my fuzzy bubble...concludes with a happy (seizure free) ending. The little inverted mohawk prince wakes at his mommy's kiss. They hug & laugh & live happily ever after...

And frankly...I haven't wanted to allow myself to think about it too much. Just in case...

In case Dr. Rockstar says "no".

In case I've learned too much of the risky stuff. And when the time comes to sign the dotted line I can't move my fingers.

In case the fear of everything paralyzes me.

And in case the hope of it all crashes at my feet because it could turn out the Trevy is not a candidate after all.

In case...in case...in case...in case...

Crazy finds me an easy target. So you see why I just haven't really let myself go there. Ya know.

But then the other day. Over our morning coffee. Jonathan tells me he had a dream. And his eyes are watering...so I know he wants to tell me more. Since Babu left us...he's been having very vivid dreams. I'm not sure that it's connected really. Just an observation.

But he had a dream. And in that dream he was the one having brain surgery. Instead of Trevor. And it was scary. And not at all like my fuzzy romantic picture. And when the dream ended it wasn't happy. It wasn't sad either. Just intense and scary. He woke up pre-conclusion.

But it shook him up enough that he sat with me. Coffee in hand. Mist in his eyes. And said,

"what if he dies?"

I shook my head emphatically no and said, "he won't."

"But what if he does?"

Words like that have a way of hanging in the air. Touchable. The intensity of them.

"I'm afraid if we lose Trevor that I'll lose you...and I can't lose you."

My heart choked me. I knew what he was getting at. Why he would go there. I just didn't know he had. Because it usually takes tugging and arm twisting to hear his heart thoughts. Or the thought of his littlest enduring a radical surgery, I guess. I have changed since this whole crazy mess began. Admittedly...I'm very consumed with finding Trevy's miracle. Rescuing him. Even while I deeply understand we may not find our happy ending during this life. And I'm a living breathing oxymoron as I try very hard to grasp acceptance. But it's as elusive as Trevy's miracle. It's just so hard to take hold of something you don't understand. And if the unthinkable were to happen...of course my heart would be crushed. I know that. So does Jonathan. But...please don't think me evil for voicing this...in many ways I already feel like we have lost our son. At least the son that I thought we had. Until he was 7 months old. And the monster came to our home. Kidnapped my baby.

Jonathan told me once that my acceptance isn't being okay with Trevor not being okay. That my acceptance is being okay with not knowing what the future holds.

I used to roll with the unknown. I mean...sheesh...I moved to Africa with two kids under 5. And never did an ounce of intensive research. Just rolled with it.

What changed? When did I become so needy to know? So consumed with being prepared?


I don't know. But he's right. I'm not the same. None of us are. Trevor has radically changed us. Not badly. In fact...in many ways he has deeply enriched our family. And all the relationships which touch us. He's such a beautiful soul. I feel SO incredibly lucky (albeit tainted with sad) that he's mine.

But now I can't get that coffee conversation outta my mind. It keeps replaying over and over again.

Of course...I told Jonathan that he wouldn't lose me whatever unexpected twists and turns this next week brings. These next months bring. That he's getting to be as crazy as me! That we've lived SO much life together...and have so much more to live. That we're doing the right thing. This IS the right thing. Jonathan...honey...we both know this is where we have to go. You know as well as I do that we couldn't live with ourselves if we didn't follow this path. To the end.

Because sometimes it takes a monster to slay a monster.

And when I go there. Thinking too much about the surgery. It looks just as scary as the seizures. It looks less fairy tale ending...and more monster than I'd like. And I'm worried too.

Did I tell you the other day I thought that it feels like we're standing in line? Waiting to board the biggest...baddest...roller coaster around. And my stomach is churning. My heart is pounding. And I want to say no...and squirm out of line. Like I usually do. I'm such a chicken. Because heights...scary unknown places...are not on my to-do-in-life list. Neither is brain surgery. Or catastrophic epilepsy for that matter.

But here I am. Here we are.

We've come SO far. Together. Believing. Our philosophy of being a family is such a huge part of what makes us us. It saturates all of our decisions. And arguments. And make-ups. And laughter. It's why I cried when Toby drove into the sunset with Coach. It's why you're not letting me go to the consult alone. It's why since Infantile Spasms invaded our family...we've always chosen the most aggressive treatments that offer Trevy the best shot. Together.

And it's why we're getting on this roller coaster...to wherever it Leads. Hand in hand.

And babe...I know this is not going to be easy. In any way. I am totally freaked out. I'm not walking into this eyes wide shut. Even though for once in my life I'm trying not to dwell on all the "what ifs". And to just board that plane to Detroit and let Life unfold. As it's already been Written.

I can't tell you that whatever the outcome may be won't involve my heart being crushed. Because it might. I know that. But I'm not going anywhere. I love you as fiercely as I do Trevy. And Toby and Bri. Honey...you're not going to lose me. You can't live through the insanity we have and not have crazy glue form between our hearts. You're stuck with me.



JSmith5780 said...

And you are BOTH stuck with all of US!

As for the dreams, does J take any medications? I have been on two different meds that have caused vivid dreams. With one med the dreams for so vivid and so violent, I had to stop taking it. I was literally afraid to go to sleep. Just a thought.

Anonymous said...


All the emotions you are experiencing are completely normal! We went through the same thing. It's going to be a tough roller coaster of emotions until you get through surgery or find out he's not a candidate. Knowing you are doing everything you can to give Trevy the best life possible will get you through this. I'll pray that you get the answers you want when you see Dr. C.

Erin M.

Holli said...

Oh, sweetie, now I'm all misty eyed!

Because I know all too well those fairy tale visions...not wanting to "go there" knowing those darker thoughts and real life scenarios could easily make me change my mind about surgery. I know it's not entirely possible to concentrate on only candidacy without thinking about the actual surgery part. But, that's what kept me sane during our trip. I told myself I hadn't even prepared myself enough to know whether or not I would agree to it. I just needed to know first if that was even an option to ponder. And although it's not at the moment, I'm still praying Austin's seizures will lateralize. Soon.

Anyway, I know the rollercoaster you're in line for. And it can't be anything but normal. This trip could very well define your course of treatment. Trevor's future. It's scary to say the least.

I wish I could be there for you! But, I'll have to settle for holding your hand through cyber space!

Love ya!

blogzilly said...

Maybe we really are brother and sister, and not just the pretend kind. Been having some thoughts not unlike yours and Jonathan's for days, the ups and downs and all that are just overwhelming. August 25th can't come soon enough and yet I can't help but hope it never comes, because making a decision about it will be the hardest thing I have ever, ever, had to do.

This was probably the single most heartfelt expression of love for a spouse and a family I have ever seen on any blog anywhere. Beautifully written.

Damn you've got some skills.

Love your analogy of slaying a monster with a monster. Wish I'd thought of that one. :)

~Mama Skates~ said...


i'm literally bawling at my desk reading this...i can't imagine being in the situation u guys r in...but the love & determination u guys have is soooo evident! u're definitely the bravest ppl i know! no matter what, it's obvious that u'll always have each other's hand 2 hold as u board that big, bad roller coaster - & 2 me, having the person u love more than anything on earth by ur side as u go thru it - that's all that can possibly matter!

praying 4 u guys as always!

Adesta said...

Like Jen said, you all are stuck with all of us. Your friends are behind you all 110%, praying that Dr. Rockstar will agree to surgery, and the results of that surgery mean seizure freedom for Trevy.

Toby, Bri, and Trevy couldn't ask for better parents.

baby trevor's mommy said...

You each made me smile and cry...thank you...

I want to respond to all of you personally. But I'm exhausted. I say that a lot, huh? It's just...ya know...


I LOVE that we're stuck with you guys!


Colby said...


Wow....Just wow....

I envy your relationship with your Jonathan (Mine's name was the same)...I have fantasized so often that Colby's father had been this type of man....Caring, strong, honest...One that could really stand with me through this...

Reading what you have written to your dear husband shows me nothing but what I would have expected from you both....A love and dedication to each other and your children that will get you through these next few days...as well as the rest of your lives....

You are SO fortunate to have each other....And I know you know that...


Joel said...

D and J,
Its awesome that you guys are being such a testimony to so many. Its cool to see how God puts a couple together so perfectly to complete each other. We're praying for you intensly. You were mentioned at church last night and will be again tomorrow at the ladies meeting. D, give J a big hug from me. J, I'm thinking and praying for you, bro.


Mrs. M said...

Cyber hug to both of you...& your Little's too.
My heart goes out to you, and Jonathon. The fears, the hopes, the dreams, the reality but thankfully you have the LOVE. Hold onto each other.
This little Canadian family will be praying for Trevy and you too. Prayers & hugs,