So it begins. The first injection free morning in two weeks. And more seizures than I can remember. We've averaging 5 clusters...or 40 seizures...a day.

Last time we weaned my stomach was in knots. Every little odd movement had me scooping my heart up from the floor. Where it lay a quivering blob of worry. Wrapped with a bow in fear & trembling. I don't think acceptance had yet taken hold.

The worry (fear & trembling too) lessened to a dull ache over time. Although it never really went away.

At one time I emailed a couple other moms whose children were on a similar IS path. I asked them if they felt as guilty as I did. It's bizarre. The way emotions assualt. On the one hand I was over the moon that Trevor was SF. On the other...I had this shadow of guilt. Knowing that so many other babies were still suffering.

For me...that's the most maddening part of this disease. There are no answers. No directions. Nothing makes sense. Everything is muddled.

Even the answers that are available are not certain. Trevy's relapse is case n' point. After all...he was one of the lucky ones. It took everyone by surprise. Except that shadow knot that was stuck way down deep in my heart. The pit that was ever waiting for the other shoe to drop.

The same pit every mommy of a SF IS baby lives with.

I know that pit well. I should've given it a name.

But instead I tried to ignore it. Which never really worked.

But this Wean is different. There is no pit in my stomach...it's been replaced by an ache in my heart. Because somehow...the joys of all that Trevor has (and continues to) overcome...doesn't erase the sad. I never understood that surrender & sad could be friends. But they are. I know it doesn't make sense...but I'm finding that I can surrender my son's future to the One who gave it to him...and him to me...

and I can mourn.

It's okay. To feel. To cry. To laugh. To accept. To fight.

To surrender...


labonte4 said...

This post makes me think of how I was feeling reading some of my old posts throughout this past year. Happy, Sad, Middle of the road, sad again...and so on.

I'm glad I started blogging to actually see where my mind and heart have been this past year. I'm sure you feel the same way. I hope blogs such as these help everyone realize that....this is what we ALL go through, regardless of the level of disability.

JSmith5780 said...

Yes mourn, but know there are other meds and other options. You aren't nearly at the point of accepting seizures, and you shouldn't be. He'll find his miracle drug this time too.


Dawson said...

WOW!! That really hit home for me. I do feel so guilty and there is that small part that is waiting for the seizures to return. I am still so scared.

Dawosn's mommy

Molli Salzman said...

I feel the same guilt and worry as well. I agree with Jen. There is still SO many more different avenues for Trevor. Have they discussed possibly using Vigabatrin next? I ave heard that used 1st with IS along with ACTH.


baby trevor's mommy said...

B...I'm SO glad you started blogging too. I love your style. Your honesty. Sometimes I think about the first time you emailed me...I was like I think I know her? It's crazy. Too crazy to be coincidence! And I passionately believe every story should be shared with honesty...and authenticity. My style is to spill my guts. Not everybody will be drawn to it...but that's okay. There are other blogs...and stories out there to drawn hope & community from...

Jen...if I weren't pms-ing...I'd be agreeing! *smile*

Allison...I remembering thinking I was nuts! Feeling guilty...and scared...and hating myself for feeling scared when I had so much to celebrate already. The guilt ate me up. Spending time in the Psalms has been a peace place for me. There ain't one emotion I've felt that David didn't write about too! And you know...I think it's okay to be scared. I've found for me...the pit in my stomache always brings me back around to Surrender. btw...I'm SO thrilled Dawson is thriving! I love his little smiley face!

Molli...actually we're investigating Vigabatrin. I just found a study that indicates Vig is more effective for kiddos with FCD...which Trevy's neuro thinks he *might* have. We're holding off until we reach full dose of Zonegran...who knows maybe Zon'll give us a miracle? It's just so hard to communiate the hope of my heart to my head...that knows failing ACTH *usually* doesn't lead to the happy ending... But I've said it before...and I really do believe it...the doctors & stats are not the Author of Trevy's future. It's just I'm read the last chapter first kinda girl...the waiting sleighs me! *smile*


~Mama Skates~ said...

wow danielle - i so wish i could give u a hug! like jen said - yes, mourn...let urself feel this, but know it sure isn't the end...i know that trevy's future is bright - but like u said, give that over to God...let go & let God...u r such a wise, honest, caring, REAL lady - and i am over the moon for u!


Mmmmaaahvelous said...

my stomach sinks for Trevy and you.
You are amazing, even if you don't feel like it right now. Such wisdom. You're light years ahead of me!
Keep heart. Keep hope. Feel your feelings.
I'm thinking of you & your boy.
(These words seem so pathetic and insignificant. I just can't find the best ones right now.)

Holli said...

Very well said, Danielle.

The fact that we have yet to try Vigabatrin drives me to keep hoping. Everytime I start to feel we have been defeated, I remember that. Maybe it will be Austin and Trevy's miracle drug.

I wouldn't wish this IS experience on anyone...much less twice. I'm so sorry that you and Trevy have found yourselves in this situation again, but I just know he WILL be sf again.