Saturday, April 20, 2013

On Paper...

Tonight I stumbled upon the very first "Max" notebook.

It's full of our scribbles of seizures, and explanations from his doctors about his new diagnosis.

What a very scared new little mommy I was then.

(Max and Mommy reunited after a month hooked up to machines, after his initial diagnosis)

Max has an appointment with one of his specialists next month, I plan on taking this first notebook to show his doctor, who diagnosed him.  I still have no idea what all it says.

photo (7)
(Easily could be in another language, he had JUST been diagnosed when his doctor had to write it out for us.)

 But, it makes me smile, and a little - what is it? - nostalgic? I'm not sure.  I just remember.  I look at these entries and remember the 20, 30, 40, 50 seizures a day post surgery, many saying "desat, holding breath, grunting, gagging".   I see my handwriting noting the first deadly metabolic levels in his blood, I know now - on paper - he should not have made it.

photo (8)

I remember.  Every little thing about those moments, I remember.

And I'm in awe.

Amazed he made it.

We made it.

(Today while we were out and about, we stopped for Max to stretch out in the back of his van.)


Elizabeth said...

I have many of those notebooks, but I haven't looked through them in a while. I can't believe, sometimes, that I actually wrote down each and every seizure.

I love those photos of you and baby Max -- and you look much the beautiful same in that last one!

Elizabeth said...

I kept a few notes when Stephen was diagnosed with 'e'. I think it helped me deal with the hopelessness and helplessness that I felt then.

I Love the picture of you and Max sleeping--so precious. I also love all the picture you post of Max now--so grown up, so alive with such a great personality. I know I've said this before but you truly are a GREAT mom. I love seeing how Max is blessed b/c of you (and the family) and how y'all are blessed b/c of him. Love you all.