that's reassuring

We survived.

Not without tears. Mostly mine. I held up fine until it was over. But no sooner did J withdraw the needle than my emotions leapt up & ambushed me...and I bawled my bloody eyes out...scooped Trevy up & squeezed tight. It's quite possible my hug hurt more than the jab?!

Trevy had no tears...just plenty of mad. Boy was he mad! The wrath of a 17 month old!

He got over it WAY before me though!

I'm tempted to not say this out loud. And yet somehow I need to. I need to in case there's another mommy struggling with the same thing. Or maybe it's purely selfish and I just need to for me? Because confession always makes me feel better in the soul. At any rate...after a cluster of 40 back-to-back spasms (that we saw) in the hospital...I stopped counting. I just couldn't bring myself sit & stare & tally. Tally how many times his little developing brain was being shocked. And wondering what that was doing...or damaging? I have a weak stomache.

But the second guessing hit me hard this morning. I NEEDED to see a cluster. It's not that I haven't been seeing them. I have. But I needed reassurance that it wasn't in my crazy head one more time. To be certain we were doing the right thing. To un-tie the knot in my gut.

And so I stared. Hard. I'm fairly certain Trevy was making fun of me. When he noticed me staring...he came in real close...and then zoomed his little face in until we were eyeball to eyeball. I laughed out loud.

It wasn't long before I had the confirmation I needed.

My heart got the reassurance it craved. And I know we're doing the right thing...

It's just that sometimes...doing the right thing...is also the hardest thing...

And sometimes...I hate doing the hardest thing...


JSmith5780 said...

There is nothing right, or good about this disease. Everything is hard... mentally and phsyically. BUT, that I way our IS community is so strong. We all 'know' and can support each other.

We are thinking of you and hoping for a quick response to the ACTH.

~Mama Skates~ said...

too funny about the zoom in - like what u lookin at willis?!

i'm the same way - getting it out, confessing - makes u feel tons better...and i know that ur blog is probably helping tons of other IS parents that have gone through this, are currently dealing with this, or will be going through this in the future! God bless you for all that you do!!!


Monica, James, Connor McGuire said...

Oh my goodness, i swear i think we were separated at birth. ha ha ha.
There are many days that I take counting vacations. Especially on days that he has had alot. i know that he is having them but how much torture is it to us to sit there and subject ourselves to the dreaded number. That cracks me up about him getting eyeball to eyeball with you. Poor Connor sometimes after a spasm will look up at me with those big green eyes and laugh or smile...like did you just see that???? Breaks my heart and makes me smile at the same time. I thank you for having the courage to express your emotions the way you do. it makes me feel like I'm not crazy after all!

baby trevor's mommy said...

Jen...we should be super-heros by now! *smile*

Sharon...the zoom is too cute! Thanks sweetie for the encouragment! xoxo

Monica...the thought has crossed my mind to have our dna run against eachother! lol Especially the way our boys are so similar. Trevy's been smiling in-between spasms too! I cry. He laughs? What's up with that?!

KC's Mama said...


I just wanted to tell you that I'm thinking about you guys and KC and I have been praying for Trevor. I hope the ACTH shots get easier as time goes on. With KC, after the first few weeks he didn't even cry with most shots. I actually found myself prefering injections to liquid meds before he got his feeding tube because he would get so much more tramatized from the liquid being shoved down his throat! lol


Shanna Grimes said...

Ugh, I feel for you. Can't imagine having to go through it again.

I hope it will get easier as you get used to the process again. Hopefully he will respond quickly to the meds.

Get some rest. You must be exhausted. I remember being exhausted in every sense of the word when we began treatment.


Mmmmaaahvelous said...

Oh Danielle, My heart goes out to you and Trevy and the rest of your family. So hard and so wrong for Trevy to be going through this again! The tears were streaming down my face as I read your last few posts.
What a little lovebug you have. Of course, Trevy knows when it's coming. I'm convinced baby R does too...he just gets this look on his face...they're smart little beings, just not able to tell us all they know yet...and they do know so much.
I'll be praying for you, sending you good health thoughts, strength, love and compassion. May everyone you encounter, either by phone, the net or in person be compassionate towards Trevy and his plight.
My heart goes out to you.
Many hugs,
Mrs. M