How did we get here? (A short-ish summary.)

It turns out the whole world hasn’t been hanging on my every word! Who knew? What follows is a short version of how we got to where we are at the moment…

On May 15, 2013 Seaside Therapeutics, Inc., the sponsor of a drug trial my 9 year old son Caleb is participating in, . . . → Read More: How did we get here? (A short-ish summary.)

And now…now I am angry.

This last week has been the most painful of my life. We began with the ending of the STX209 trial, worsened with the news that Grampy (Eric’s grandfather, who lives downstairs) had broken two vertebra in his back during a fall…a fall he took when we were visiting Eric’s mother, who is recovering . . . → Read More: And now…now I am angry.

To honor my Papa.

I’ve been writing blog posts in my head for days. Within hours of finding out that my Papa had passed my mind began turning to all the reasons I, and so many others loved him. None of what I was writing measured up, though, so I didn’t put any of them down on paper . . . → Read More: To honor my Papa.

What would you do?

If you were me, if you had this most amazing child…this sweet, funny child…this handsome, clever child…what would you do to keep him whole? What would you do to save his voice, his sly sense of humor, his joyous personality? Would you sit quietly while pieces of him slipped away from you? Would you . . . → Read More: What would you do?

The reason we will never quit.

Today, we start again.

Yesterday, Caleb turned 9. He had a party at school to celebrate and he loved it. Yesterday, I was looking at pictures of my smiling happy boy with his friends. Yesterday, for the first time, I didn’t meet one of his birthdays with a feeling of dread. Yesterday, I was not scared that . . . → Read More: Today, we start again.

Happy birthday, dude!

Caleb,

Dude. Are you aware that you are 9? NINE! I’m not going to whine about how fast the time is going because you keep showing me how awesome you are becoming with every passing day. I just can’t get enough. Every time I turn around you’re doing something new and amazing. Something that . . . → Read More: Happy birthday, dude!

Inchstones.

Thanks to the support and wisdom of the fragile X family I’ve gained, I gathered up my inner Piglet in my arms and, in that quiet voice moms everywhere have perfected, told him to just suck it the f*ck up right now or so help me1, and took Caleb to the circus. I was prepared . . . → Read More: Inchstones.

Love is…

 

Love is flowers (the same flowers I carried on my wedding day), my son writing Mom (even if he started with Mooo), my husband’s delusions (I suppose I could be the best wife ever but that really makes me wonder about the rest of you) and cinnamon buns (from Pillsbury, if you . . . → Read More: Love is…