From the very beginning I had this drive in my core to find out why. I never asked why. Because...although some may find me naive...I have always believed nothing happens by chance. There is a Purpose already mapped out for my life...for Trevor's. But I needed to know why. What. To track...hunt...and ultimately sleigh the Beast. With meds...with therapies...surgery...or whatever means possible.
Which is precisely why I pushed for the testing. Any testing. Hoping for answers...while trying to come to terms with the possibility of never finding any.
It is also why I called Dr. Genes during Trevor's most recent admission. The red tape is easier to move through while in-patient. She assured us time & time again that the odds of a genetic flaw being our Beast was very slim. But at my insistence she pursued Rett & A-typical Rett...and on a whim added a highly unlikely...excessively rare mutation. ARX.
Randomly over the past few weeks I found emails from Dr. Genes. Happy emails. As anticipated the testing was all coming back negetive.
Trevy's studied-at-Baylor-labs came back positive for the highly unlikely...excessively rare...ARX mutation.
The day Dr. Genes called to say she really needed to talk about this in person...I was having a good day. I was feeling strong...and courageous. In fact, I told her as much...
Just lay it on me...
I'm in a good place right now & I promise not to go crazy mom on you. I can handle it.
The gravity of what this could mean for us has slowly been building on my heart since I laid the receiver back down. Although I'm trying to keep myself in check. The information out there about ARX is very limited. Very sad. Breath-takingly sad. But limited. In fact...so limited that Trevor is the first person in the world known with this specific ARX mutation. At this point...anything is possible. We really have no other stories with which to compare notes. Maybe Trevy will be a happy ending...for another family learning that their son has a very rare...highly unlikey gene mutation. Like most things IS related...only time will tell...
Dr. Genes wants to speak in person tomorrow. With Toby in tow. To have his DNA harvested & sent for Baylor study. Ordinarily it would be a scary thought. Finding out if my both of my sons have a mutation. But in this instance...if Toby is positive as well...that means it's BENIGN! Just an ironic family trait. And not our Beast after all.
Dr. Genes prepared my heart that the chances of Toby having the mutation are slim. But she's said that before...about Trevy. God...I hope she's wrong again.