Let the Meeting Come to Order

Announcements:

Ben has a new pediatrician! Yessssssss! On May 18th, Ben will come face to face with the wonderful Dr. Lail! She has already put us in contact with doctors at the Christopher Walsh Laboratory in Boston. They want to read Ben's MRI. They want us to have genetic testing and be part of an umbrella study of rare neurological disorders. We might not ever learn anything about Ben's condition, but I don't think I care. Not that I wouldn't listen intently if someone could tell me why/how/huh?... but I don't really need to know. I just need to keep moving forward. Speaking of...

Ben has a new school!

The school is called The Frankie Lemmon Academy for Absolutely Adorable, Precious, and Happy Little Children Who Are the Apples of Their Parents' Eyes and Also Get Private Limo Service To and From School Every Single Day! No? That's not quite right?

Frankie Lemmon Special Needs Heaven-on-Earth School and All-Around Fun Place to Allow Your Child to Learn and Do! No?

Er, Frankie Lemmon Godsend School and We'll Even Potty Train Your Sweet and Special Little Baby, So Don't You Even Worry Your Pretty Head About It! Not right, either? Hmmmm.

Ah, yes. Frankie Lemmon School and Developmental Center. We went to visit on a Friday. We met every teacher, every therapist, and every student. We were immediately enamored and I felt certain that no other place was right for Ben. Here, he will receive feeding therapy, which is unavailable to him in the public schools. He will receive some measure of each type of therapy he needs every single day: physical, occupational, speech, and feeding. And re: the limo service? That's not completely accurate, but this is how I came to feel comfortable with a stranger picking up my baby, who cannot walk or talk (yet!), and driving him across town twice a day. The director of the school, Janet, told us that one of their drivers had to be out for several weeks following surgery. He called every week and asked, "How are MY kids?" He even attended their spring program! If the drivers care that much about the children they are transporting and they have immaculate driving records to match my own (hush, Mom)... Honestly, this place deserves its own post, so stay tuned for that.

Old business:

About a month ago, Ben had another febrile seizure. The ambulance outside the door of the Little Gym was surely the highlight of poor little Ava's third birthday party, Ben's very first real birthday party invitation. The excitement was clearly too much to bear.

Oh, and Ben had *another* seizure, this one a petite mal, or "silent seizure." This one happened last Friday, ten minutes into an exceptionally good feeding therapy session. After feeding himself shredded wheat (and not just any shredded wheat, but non-frosted, organic shredded wheat with a pinch of cinnamon in the center, because his mom is a food fanatic like that) with a spoon - YAY! - Ben's demeanor turned on a dime. He refused food and suddenly looked as if he had been heavily drugged, much the same way I look at approximately 2:30am on any random Tuesday night when he wakes up and cries the cry of not going back to sleep. His little body suddenly turned limp like a wet noodle. Jen and I quickly scooped Ben out of his seat, and she held him while I called the neurologist. Ben was uncoordinated, disoriented, and just vacant. The nurse told me to keep a close eye on him and call back if he lost consciousness and stopped breathing. As soon as Jen handed Ben to me, he settled right in and took a solid thirty minute power nap, breathing like a champ all along. That was a good thing, because Landy was still in New Orleans, and I'm not much looking forward to the day when Ben has a seizure of any type and LT is in the middle of a trip somewhere outside of an immediately available direct flight home. I'm planning on requesting a private jet from his company. I distinctly remember somebody saying at some point, "Whatever you need." Well, I need a private jet at my disposal at all times. And a pedicure. And a personal shopper. And an unlimited supply of this drink called Olade that I found at EarthFare. OK? Thanks.

New business:

Epiphany. Not really; I've known this all along, but changing the way you feel about the way you always thought your life would be takes time to slip on, like wearing an old dress. Imagine putting on your old prom dress. Of course, mine would fit like a glove, but yours might not, so that will help you to understand my analogy. So say your old prom dress no longer fits, and you're pulling and tucking and tugging and sucking it all in, forgetting to breathe and just trying desperately to smile and appear comfortable. As soon as nobody is looking, though, you might rip a seam or unzip it immediately. You look in the mirror and feel terrible, and you might cry for a good, long while. Then you look up at yourself, take a deep breath, and say, "Self, this simply will not do." Then you just start running. And running. And running. Running like Forrest Gump. (Leave those old prom shoes in the box, or this will not go well.) If you run long enough, you'll clear your head and begin to focus on what's important, and eventually you might find that your dress fits much better. Not perfectly, but comfortably. Once again, you look at yourself in the mirror and see that you are still you. Your life is as it should be. You have had to reconcile who you once were against who you have become or must face becoming. You have had to adapt, and you have done it. Better said, you are at peace with the perpetual adaptation to a life you didn't see coming.

Life does not look like the pages of a Pottery Barn Kids catalog. I mean, on a Monday (because that's when your cleaning lady comes), you might get lucky and capture a shot or two on your camera of everything *looking* as if it could be pictured on those pages. But let's face it. On Tuesday, there will be no toy left unturned, no surface that isn't sticky.

Life is not always a snapshot of your perfectly dressed and coiffed family on the beach. There will be mascara smudged under your eye. Your husband's white shirt will have an unnoticed, blue dry cleaning tag affixed to the front. The wind will be blowing so hard that your hair will ask why you even bothered. The time will be high noon on a blindingly sunny day. You will not know enough about your new-ish Nikon D90 to understand why the condensation won't stay off the lens, so you will just try to take all the pictures asfastasyoucan! You will, upon advice from a fast-thinking friend (Thanks, Ellie!), try to pass this off as the "1970s Olan Mills Photoshop Setting." (If you happen to be a natural light photographer, you are laughing hysterically. Shut up.) You will bribe your eldest with a Mr. Misty from the Dairy Queen on the way out of town if he will take one decent picture so you can just get the frick out of there.

And that's okay.

You know why? Look at the smile on that littlest face. And on the other little face. Last summer, when this picture was taken by someone we plucked off the beach because she had a camera bag and we figured that was as good a bet as any other, we adults were emotional wrecks. Back then, I cried every single day, sometimes for hours. Sometimes with a bitten lip and a wiped-away tear; other times full-on sob sessions all the way through a thirty minute midnight shower so nobody would hear. I couldn't bear the thoughts of what life was going to be like for Ben and how it would affect all of us, forever. But look at us. Look at him. Look how happy he is here. Isn't that what really matters, regardless of what you think may or may not ever happen? Maybe this was when I realized that I needed to go squeeze into - er, I mean throw on my prom dress and run for it.