Skip to main content

celebrating twelve

The line is indistinct; I'm not even sure when or if I stepped over it.


Somewhere along the way, I stopped mourning his developmental losses so deeply.


Somewhere along the way, I stopped trying to force him to breach the gap between his peers.


Somewhere along the way, I have grown to see the beauty in his childlike spirit.


I watched him run about the yard with a friend yesterday. He still runs like a toddler, you know. His big boy body lumbering about with the motor planning and ease of a small child; there is a deep, unspeakable beauty in the way he runs. Watching a young child bounding joyfully about is lovelier than words. It's magical. That same magic still glows about and radiates from him.




There is a little place in a mother's heart that does not want her children to grow up and fly away. Trevor won't. He is my baby in the truest sense. That thought used to wrench my soul, and certainly, there is a sadness woven there, but there is beauty too. 


I will never be alone.


His friendship is the sweetest, most guile-free friendship possible. In it, I see a glimpse of our wholeness that was broken. We weren't meant to be hateful, jealous, excluding, gossips. With an aching heart I have observed children much younger than he exhibit such unkindness, at times directed at him. Those things are not in him, much like they are not evident in a very young child. There is a simplicity in the way he loves. The way he just is. The beauty is remarkable if only one has the eyes to see it.




Today marks twelve years of growing eyes to see the beauty in heartache. To see the deep, precious value of his life. To grow towards peace with our companions, Sorrow and Suffering. I'm not sure when or even if I crossed that indistinct line. I only know that today I am not sad. Today, I am grateful for the gift of being his mom. 


Comments

Maureen said…
Beautifully expressed..
Anonymous said…
This was beautiful to read. My daughter is being treated for Infantile Spasms but her cause is genetic so we probably deal with seizures our whole life. Did you ever find the root cause for Trevor's condition?
Danielle said…
When Trevy had his surgery, they were able to study his brain tissue and we learned that he had wide spread cortical dysplasia. We believe this was the underlying cause, though we don't know what caused the brain malformation. He did have an ARX mutation — but it was extremely mild and the first change of that particular kind ever found.

I haven't blogged in forever. It's poignant to see that families are still finding hope here.

Coincidentally, we're celebrating Trevy's 16th birthday (a tad early) today.

Popular posts from this blog

I cried when I got the news

I felt like such a heel not going with Trevy for his first post hemi EEG. Yeeeeeees...Jonathan went with him. Yeeeeeees...he's just as good as me. But still! He's my baby! I was instead sitting on floor 6 east waiting for Neurology to get their boots here and help me sort out this medicine mess! Seriously it's like a bad joke...how many Neurologists does it take to write a bloody script? And fax prior authorizations? Cause Trevy's been back for hours now. And I'm STILL waiting! Anyway... Jonathan had just stepped out to meet the pizza delivery guy when Dr. EEG made his rounds. Of course I asked immediately if he had read the EEG. Of course he had. That's why he was there afterall. And I cried when he told me... that for the first time in almost two years. For the first time since this whole crazy mess began. my baby's EEG is completely normal! Side Note: It's super fun to sob in front of Japanese men and watch them squirm When I kept repeati...

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...

it's like being asked to the prom...

only MUCH MUCH bigger! I had noticed (yes...I stalk my site meter!) that a government ISP had logged onto Trevor's blog. Whoever it was had spent a good deal of time hanging out too. Followed a few minutes later by a government ISP...hailing from Washington. As in DC! My eyebrow raised. It was just kinda odd. Note-able odd. You know? Anyway...later that day (last week) I was folding laundry & thinking my crazy insane thoughts. Along these lines... I hope I'm not saying anything I shouldn't! Maybe I made somebody mad? Wait a minute! I live in America! I'm allowed to say anything I want! Aren't I???? A shout from the other room interrupted my thoughts before I had a chance to further mull. It was Jonathan. I had just received an email. **Side note...he's always doing that! Reading my emails! Sheesh!*** The said email was from a US Senator's aide! Asking if he could speak with me. Little ole' hardly has time to splash some make-up on ...