Skip to main content

observations

Toby observed the funniest little thing this morning.



It never rains on us when we're at Trevy's bus stop.



And it's been a year of extreme rain here in New England. Yet never once has it rained on us. It's rained before. It's rained after. In fact...it literally began to drizzle while the bus was pulling away this morning.



But never once while we're waiting for the bus. Nor...that I can remember...when picking him up!



It's just a weird little thing. It'll be interesting to see how long it lasts.



**********


I had an observation of my own this morning. While checking emails and such. Cuppa coffee in hand.



Somewhere along the way Jonathan has completely taken over Trevy's meds.



Every morning he plops him on the couch and force feeds them to him.



And every evening he plops him back on the couch. Usually jammied up and smelling like baby bath. And force feeds him round two.



I don't know when I stopped being a part of the medicine administering process?



I have fuzzy memories of having the hold him down so Jonathan could pry his lips open and force the yucky tasting toxins down his throat. But after surgery that changed. Partly because two of his meds don't taste so yucky. Partly because...well...Trevy's not the same child anymore.



Anyway...



This morning it hit me. How freeing it feels to not have to watch the med hour strike the clock. It's really just a little thing in the whole caring for Trevy package. But it's still...



nice.



To share responsibility.



So when I noticed this morning that it's been ages since I've helped...I actually thanked Jonathan.



And he was so sweet about it too. Just more proof that he's a keeper!



He said something like...



he knows he gets to go off to work and not think about Trevy for 8 hours a day. And it's just a little way he can reduce my load.



Seriously. SO sweet.



I think I maybe expected him to respond with...



Yeah...well it would be nice if you could help every now and then!



You know. Like maybe I would.



It made me feel all warm and fuzzy. That we didn't have to sit down and create a divide and conquer list. That I didn't have to get bitter that he wasn't noticing. He just noticed. And it made me feel like we're a Team. A Trevy Team. A Trevy Hope Team!



And well...



it was a nice moment. And I'm determined to mingle some nice moments within the hard...the heartbreaking...the harried...the hurried...the holy crow I can't do this anymores...



because the nice moments are what refill the hope tank along the way!


Comments

Debbie said…
A vacation from administering meds and not having to watch the clock?

Sounds like a DREAMY vacation to me!

Way to go J!!!!!
another mama said…
Sometimes when I'm tempted to complain about my husband not helping I think about some of my friend's husbands. They don't play with their kids, they don't give baths, they don't give medicine, they don't read bedtime stories, or a myriad of other things and my husband does. And I realize how blessed I am to have him.
Kelly O'Melia said…
He is definitely a keeper! Love a man that steps up like that and helps carry the burden, now that is love!
blogzilly said…
I think my wife USED to think I was a keeper. Nowadays I'm not so sure. Not that I am not helpful, cause I do a lot...but I feel so bad and down all the time it is wearing on her to where I think at some point she will reach a saturation point and maybe just not want to be around such a sourpuss.
Colby said…
Danielle....

What I love most about you is that you recognize all the blessings you have and write about them continually....

I'd give anything to have had a "keeper"....Been going it alone for 11 years now, and "it ain't easy"....Heck, mine won't even pay for diapers anymore! (In jail AGAIN for non-payment)....

You are truly blessed!!!

Cyndi

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...