it would be a lie

It would be a lie if I said I wasn't half hoping that something. Anything. Would happen to stop this from moving forward. I had already promised myself if something happened...that was it. No do overs. And I think in the deepest core of my heart I was hoping something would.

It would be a lie if I said I was okay. I am not. The threat of breakfast coming up right here right now...is very real. The screamer headache is also tell tale that I am not okay. Not right now. Not today. This is the single hardest day of my life to date. I don't anticipate the next month being any easier.

It would be a lie if I said I haven't been blaming myself. For so many various things. Not excluding that it took me a solid six months to work up the courage just to email Dr. Rockstar. To work up the courage to pursue surgery. How could I be such a coward? And let my little boy seize hundreds of times a day for a year? And watch the monster swallow him up little by little. Until we sit in a room with Dr. Neuro-Surgeon. Who looks me in the eye and says if we don't get control of these seizures now then Trevor will continue to slip developmentally downward. If I had just swallowed my fear this day would be long behind us.

It would be a lie if I said that I don't half hate everybody else in this waiting room right now. In fact, that dude snoring on the bench over there is first up on my bash over the head with my laptop list.

It would be a lie if I said my heart isn't ripping in half that I have had to let go of all three of my children. That I'm sitting here alone. Because Jonathan had to go check out of the hotel. Trevy is in surgery. And Toby and Bristel had to stay behind. But as much as I want them here. For very selfish...very unhealthy...reasons. It is not healthy for me to lean on them for comfort. The reality is...I am relieved that they are far far away from this place. Safe with Grams. Especially after we saw another little family come back in after saying goodbye to the little sister. And the big brother was a sobbing mess. Which reminded me of Toby. He's so sensitive soul. It's for the best. I just miss them so incredibly much.

It would be a lie if I said I am not scared to death to see him again. Like that. People keep asking if they can do anything. If we need anything. I keep responding...only a time machine.


Oh well. There is no turning back now. It is only forward from here. I'm not trying to be all depressing. I'm not so sure this unlimited internet access is really a good thing. But then I've heard journaling is therapeutic.


And so I spill my guts in cyber space. Because it's just a really really really heavy day. And I have to do something with all that swirling inside.


Anonymous said...

I promise everything will be much easier in a month. This week may be terrible, but by this time next week, it will start to turn around. Keep the faith.


MJStump said...

I feel your heart just aching and falling right now, and I will do whatever you need to keep it together and just hold it for you.

I'm sorry I have no time machine, but I can pray and ask God to dump a million galloons of glue to hold your heart together and a giant to hold it up and not sink into your stomach.

Yeah, I think journaling is a good thing..just let it all go so its not building up and overflowing in your mind. Then we can all comment and tell you guys how much we love you and are praying for you all.

Remember your blog is titled "Trevors Hope" and we have so much hope for you guys and are always thinking of you.

Ginormous Hugs and A Flood of Prayers,

Jackson's Blog said...

Thinking of you all this morning! It is such a tough and long day today! I'll be praying for Trevor and for a smooth 1st surgery! Love the pictures of him in the water! ;-) meghan

Holli said...

First thing I did this morning was come to check on you guys. Just imagine how many of us are following along and saying prayers and supporting you and Trevor every step of the way.

Your heart may be spilling over right now, but at least you have this outlet for it to spill on to. I can only imagine you sitting there fake-reading mags collecting emotions and not releasing them. Writing is something you do very well...could possibly be the best way for you to just "spill".

Love you guys...thinking of you...praying for you.


Sophie's Story by Elaine said...

Unlimited internet access is a good thing. We are all here for you. To support you through this.

By the way, I have way too many surgical waiting room stories.

But every little distraction helps.

JSmith5780 said...

hang in there, we're all standing (virtually) beside you.

love and hugs

Liz said...

Thinking of you. Praying for Trevy. Wish there was more I could do.....


~Mama Skates~ said...

wishing i could hold ur hand right now...blog away dear - we're all here 4 u!!!

Angie Lang said...


I have been following you guys for awhile. Found you via Connor's blog. My son and Connor go to school together. Just wanted to let you know that I am praying for you all, especially Trevor.

Lisa said...

It is an insanely heavy day. And there were many moments, every day we were there, that I thought "why did we do this?". Because it's THAT intense and THAT emotional and scary. Don't beat yourself up about not acting sooner. This is a major undertaking and it's okay to wait and get to the point where you have the strength/whatever to push through it. And if you don't feel strong now that's totally fine and normal. We heard from so many people how strong we were and no, I didn't feel strong at all.

I hated so many people in the hospital too, people whose kids weren't going through anything nearly as serious as mine. I hear you on that.

Prayers and hugs going out to you...the surgery days are by far the worst.

Ashley Potvin said...

I wanted to write and say not to feel guilty about anything since EVERYTHING you do is for the best for your children. Then I stopped and thought that no matter what, I would feel guilty, and so would any mom. You just can't tell a Mom not to feel guilty. It's not in our makeup. So how 'bout I say don't beat yourself up. You are doing an amazing job. You and Jonathan are absolutely some of the strongest people I have ever met. You will get through this and be even stronger. And all of us will be stronger for knowing you.

So instead of bashing Mr Snores over the head, go out and get a squirt gun, soak his pants, then laugh to youself as he thinks he had an accident!

Massive hugs to all of you!

All Star Mom

Sinead said...

Some of the people there have kids getting tubes in their ears and some have kids getting tonsils and adenoids out. And some have kids getting open heart surgery. Its so hard to be in mixed company going through this. We were the last in the waiting room the day Emma had surgery. Its hard. It was the hardest day of my life. And we just had single stage surgery which is a lot easier. I am with you my friend. I am holding your hand. My other arm is around your shoulder. You cannot see me but I am there too. You are there for Trevor. I am there for you. Many hugs.

Monica~ James~ Connor said...

Oh Danielle...I know you are so torn over this, but this is going to work out...I just know it deep down in my heart, it has to. Wish we were closer to where you are...I would totally kick the snorer in the shins & run. And to keep you company too ofcourse. Sending all of you big hugs including Toby & Bristel too!! xoxo

Joel said...

We are all praying. Share all that you want, we are checking in all the time to see and hear how things are going. We love you guys and we are praying.
Joel and Cynthia

Anonymous said...

I'm so glad you have this blog to "talk" to all of us who have been there before. It's good for you and good for us who are all thinking and praying for you.

This is the hardest day...the waiting, the unknown, the stress. Oh, and the others in the waiting room. The stories that are there...we had the parents who's son was having his spine fused...the poor boy was in so much pain. But mom brought Trevor an angel bear the next day:) She was an angel. Then at the end of the day we were the last ones in and a mom came in because her little girl had broken her arm. The mom was drunk...asked us if we knew of a store that was open that late...ugh.

Anyway, thinking and praying, thinking and praying.


blogzilly said...

I feel for you, I really do. Been there and know a lot about the emotional range you are traveling. Did you know Dora's Daddy (my friend Richard) is on Facebook? I am going to Friend Suggest you guys. Keep in touch with him this week. Also, if you need anything, just to talk, I'm e-mailing you my cel phone number.

Here if you need me. And don't be afraid to reach out to Richard. I'm telling you...he belongs in a ministry, but he's also a damn good psychologist. :)

Colby said...

I am SO thankful to be able to have been inside your head through this....It is AMAZING how you can take me right where you are.....

And this must be wonderfully therapeutic for you....Better than smacking someone silly!!!

You and your hubby are THE best parents who have made THE best decisions for YOUR son.....If this was supposed to have taken place before now, it would have....

This is Trevy's time.....

Love you guys!