The Cup Is Half Full

I can honestly say that for the vast majority of the time, I do a really great job at keeping it together. I continue to stay optimistic, be Raquel's biggest advocate, and push, push, push for answers, treatments, etc. But I also have the days when it all sort of gets to me and I start to wonder what her uncertain outcome will be. Those days are tough, so I try to force myself not to have many of them.

But sometimes I can't help it. And that's kind of where I've been this week - a bad case of the blahs. Don't get me wrong, nothing has happened to make me lose faith. I think it's just natural to have these feelings sometimes, as much as I hate it.

On the upside, I've joined a Landau-Kleffner Syndrome support group and am getting a wealth of information about certain medications, treatments, specialty doctors, what has & hasn't worked, - and outcomes. Everyone I've spoken with says the light exists at the end of the tunnel, but as one mother stated in an email: "...the effort extended on our daughter's behalf traveling through the LKS darkness was monumental." I completely get that. It is definitely an uphill battle, but one I will win. I guess this is where my persistent and stubborn traits come in handy. I refuse to give up, and am hoping to find a LKS Neurological Specialist somewhat close to get another opinion as far as treatment goes. Sacramento is as close as I can find right now but I've only just begun the process.

As far as outcomes go, the vast majority say things definitely start to change around puberty. It's basically all about finding the right meds and producing speech before that. One mother has a 21-year old daughter who is a senior in college with a 3.7 GPA. Another has a daughter who is a senior in high school and uses sign language to communicate. But both are extremely functional. And these two particular cases were originally diagnosed so long ago, LKS was unheard of. I'm confident that we've advanced in treatment/therapy since the 1990s and more options will be available to help Raquel. It's just a matter of finding the resources. But the cup remains half full, and I'm determined to do whatever it takes.