What Just Happened Here?

Many Happy (More or Less) Halloweens

2010-11-02T09:07:00.009-04:00

Halloween... the time of year when I can give up, put my gardening gloves away, and just go buy some pumpkins!

I know what you're thinking. Magazine photo? No. My front porch. You can tell by the filthy sidelight windows, the shaggy (but very loved) dog, and the almost rotten black pumpkins. But I do always get excited about hanging my spider webs (an idea I shamelessly stole from Becky Driggs)! All you need to create your own is a yard stick, a box of white chalk, sharp scissors, about five or six white paint pens, an inherent spatial sense, several hours on your hands and knees, the restraint to not swear too badly in front of small children, and a few screen rolls. I only need to hang these for 94 more years to feel that doing all that work was justified.

You can't tell where the pumpkins are caving in because I rotated the bottom one to hide it. Also, when it comes to Photoshop? I'm pretty, pretty, pretty good.

Happy Halloween and Everything Else, Too!

Ben and his class went trick-or-treating together at school. He doesn't know or care about candy (which I plan to support forever since brushing his teeth is akin to kangaroo wrestling), but he clearly enjoyed being my tour guide!

We gathered with neighborhood friends to play and eat before everything got too sweet!

Seeing my kids so happy together is always a treat, but seeing Ben smile while sitting in this spot while dressed in costume is a almost a miracle, like when Mary Lou Retton won all those gold medals or when I won the stock contest in Dr. Baldwin's Financial Management class. (Buy and hold, people, buy and hold.)

This year made me feel especially nostalgic for our first Halloween as a little family of three. John was only seven weeks old, and I was still just getting the hang of our days together.

Our Little Pumpkin, 2003

He is still my little pumpkin today!

2004, the year that brought big changes: new home, new city, new state! We loved living in Brier Creek and still talk about what wonderful, carefree days those were. John was still a little young to go out, but he was great for charming all of our neighbors who stopped by for treats! (And it was so nice to live in a place where the chances of being able to go sock-free on Halloween night were pretty fair!)

2005

We were heavily influenced by Pixar back then. He refused to wear anything on his head or face, but I still thought he was a perfect Buzz. This is one of my favorite pictures ever (except for his hair, which had just been shorn like he was a sheep during a wool shortage. Landy.) We moved back home to Kentucky just a few days after this.

2006

Home in Kentucky again, this was John as Woody at three years old. Took some serious doing (bribery, manipulation, subliminal messages) to convince him to wear a hat at all.

Back then, he could name all the states in alphabetical order, list all the Presidents of the United States in order, and pick out Pete Rose on a poster of the Big Red Machine. In fact, he just had incredible teachers in his Christ Church School 3 year old class. (Can I get an "Amen" for Mrs. Hopmann and Mrs. Booker?) I once asked him to point to the worst president on a poster that had all of their pictures, and he stuck his finger right on Jimmy Carter (bless his heart). Some of my friends would have disagreed with little John, but his genius would likely have been lauded by some former hostages. I just smiled and asked him who the best president was. He said, "You are, Mommy." Maybe he *is* a genius?

Anyway, don't ask him to give you either list today! He's far too focused on sports to bother with things like history and geography. But he can certainly find Pete Rose in a crowd.

We boomeranged back to NC just before his next Halloween:

2007

Allowing your child to sleep with a sugary lollipop in his mouth is just good, common sense parenting.

2008

But if you do it too often, his teeth will end up looking like this. This year, John was Bumblebee (with glow-in-the-dark vampire teeth?), but it's a little hard to tell in this picture. He loved Transformers for about five minutes.

2009

And then he moved on to a ten minute Star Wars obsession. Obi-John Kenobi.

2010

And finally, this year, he was Troy Polamalu. Football is the obsession that I think is going to stick!

Ben

2007

Well, he was certainly SuperBen, but as I've stated before, this was a very difficult time for us. Ben was nearly six months old here, and we were heavily in the denial/confusion/worry stage.

2008

Does this costume look familiar? I wonder if Ben was upset that I dressed him in a hand-me-down costume.

2009

While times had certainly gotten better for our family since his first Halloween, Ben clearly still was heavily in the denial/confusion/worry stage of costuming.

2010

But just look at what a difference a year makes!

Ben as Plex the Magic Robot, following his brother's No Headgear policy.

What was missing this year? Just a few of our favorite people. We missed you, Jackson and Luke!

2008

2009

Everybody Needs a Little Time Away

2010-10-01T10:23:00.016-04:00

Earl, Schmearl. When we make plans to come to the beach, all the hurricanes should just plan on turning themselves back out into the Atlantic. We took a big family vacation that was only a few short hours away! Well, for us anyway. Sorry, everyone else. But hey, we were all together and our house had seven bathrooms. Isn't that what's really important?

We stayed here.

And this is the back: home of the cold pool; all the potential splinters; the hammock; pool surfing; the albino crab; a hiding place for a mom trying to read more than four pages of her book; and four happy, laughing little boys.

We, uh, relaxed. Everyone had some hammock time.

And some beach time.

Luke and Jack loved playing "Cornball."

Uncle Matt (or Uncle "Meerkat") taught John how to catch the waves!

Ben and Jackson finally fell in love with each other...

...and had a blast navigating the stairs between the

main level and the "fourth floor" (aka Daddy's office), Lewis and Clark style.

John loved reading to his little cousins, and I loved them all snuggled close together. This lasted for a good three and a half minutes.

There was fishing! Did you know that real fishing does not resemble the iPhone game called Flick Fishing? No, it doesn't. Real fishing requires patience. We don't have that. But we now own two fishing rods, took a nice picture, and saw a snake. So there's that.

There was a Beach Birthday!

Hey. Heyheyhey. For Pete's sake, please do not report me to Cake Wrecks! I have claimed no talent in cake preparation/decoration/presentation.

New Canes jersey!

Getting ready to open Grandmother Jane's and Grandaddy Bob's present, which was:

his first set of real golf clubs!

YESSSSSS! Thanks, Minnie!

Luke and John (in his new Steelers shirt, which has since been worn 87 times)

Luke, John, Jackson, and the new skates

What's the big deal? Should we know about this? Do we need one of those? Mom?

Little Icing Lovers (a genetic trait inherited from Mom/Aunt Laurie)

We learned to play peek-a-boo! Or I suppose he might have been exasperated by all the pictures.

Just the girls: Me with my sister (in-law, but I just like to call her my sister), Laurie, and our beautiful moms, Marcia and Jane.

Sunset Grille in Duck

Hugging Minnie after supper

Photobomb!

Landy was attacked by our four favorite little boys (and loved every second)!

We were terrified by snarling, ferocious bears!

We played Follow the Leader

We found a cute little monkey in a tree. Why, yes, he did make this face for every picture.

Some of us climbed to the top of the Currituck Lighthouse. Some of us didn't. Some of us found this to be a less than relaxing activity.

These two were fine with it.

This one just wanted to hang around (and look extra cute)!

Looking at miles of beautiful peace and quiet from Buck Island in Corolla, NC

We loved the ocean! The sand! The water! In my ears! In my eyes! On my teeth! In my shorts!

Really loved it! Stuffed some extra sand in my pocket for later when I felt hungry!

We practiced for the NFL combine...

...and worked on our punting form.

We were thisclose to being color coordinated!

And we had a wonderful, beautiful, relaxing week. All of us!

Alright. Listen up, boys. We have to go home now. Let's go, okay?

NO! I want to stay forever!

I bet we will get to stay if I use my most very cutest pouty face.

Oh, dear. But I haven't packed yet.

By the way, Mom, please remove these Thomas pajamas from my person as well as from my vast hand-me-down wardrobe. Since I know you have stockpiles of trains and Thomas books just waiting for me to glance in their general direction, I'm planning to not have one speck of interest in any of this Island of Whatever nonsense. Thanks.

Whatchu talkin' 'bout?

Sigh. Well, okay. See you next year, Outer Banks!

A few things we loved in OBX:

Corolla Classic Vacations

Sunset Grille & Raw Bar

The Blue Point

Tim Buck II

Tommy's Gourmet Market

Currituck Beach Lighthouse and Museum

Just for the Beach Rentals

Surprise Me

2010-08-30T13:58:00.013-04:00

You were scheduled to be born on a Wednesday.

You surprised me by debuting on a Tuesday.

I thought you would be a dark-haired replica of your brother.

You surprised me, my little blondie.

I guessed that you would weigh much less than your brother's 10 lbs, 7 oz.

You surprised me by tipping the scales at 10.5.

I waited for your gaze to follow my finger.

You surprised me by staring right through me, into the distance.

I clapped loudly on your left side, waiting for you startle.

You surprised me by holding still, showing no response.

I willed you to hold your five month old head steady.

You surprised me by wobbling and slumping against my shoulder.

I sobbed at the thought of never seeing a smile cross your sweet face.

You surprised me with your first, long-awaited, gummy grin.

I expected you to have the same food allergies your brother does, or worse, different ones.

You surprised me by not having any at all. Huzzah! (...and thank you.)

I hopelessly wondered if you would ever be able to sit unassisted.

You surprised me by holding on to your music mirror until you were able to catch yourself as you fell.

I felt despair as you gagged and were unable to tolerate texture in your food, worrying that you might never put anything in your mouth that wasn't a spoon or a bottle.

You surprised me when you let us put that Club cracker on your tongue.

I struggled with the idea that you might not ever be independently mobile.

You surprised me by scooting across the room.

Then you surprised me by crawling.

And then you surprised me by crawling very well.

And later, you told that walker to bring it (well, not verbally, but...)!

I pleaded with my words, my heart, my eyes, and my prayers that you would speak to us. Any word. Anything.

You surprised me by shouting, "DOG!" and "GON-GON!"

I wondered if we would have to move from our home to accommodate your physical needs. (Read: Maybe that upstairs bedroom isn't such a good idea.)

You surprised me by climbing those stairs with ease. (The downstairs gate goes up tomorrow!)

I felt my heart break as you repeatedly pushed your brother away every time he wanted to hug you.

You both surprised me: John's patience and Ben's eventual warming. Best friends? Absolutely.

Benjamin, I still wonder what will happen, what you will be able to do, how you will change and grow. All mothers do this.

Will you ever have a verbal conversation with me?

Will you ever walk without assistance?

Will you be able to eat what the rest of us are eating?

Will you ever live independently?

Will you go to college or have a job?

Will you always be as sweet and determined as you are now?

Will you get married someday?

Will you be okay when the day comes that I'm not here?

This I know: You will surprise me.

Peeling Grapes

2010-07-30T01:22:00.015-04:00

I don't think about Ben having special needs every minute of the day, something I couldn't have said even a year ago. I'm busy doing things that I did with his brother: changing diapers; preparing food; reading books; packing snacks; grocery shopping (and when I say "grocery shopping," I mean grabbing whatever is the closest to the end of the aisle because I don't have time to meander around the store); trying to keep up with dishes and laundry (which is akin to running up a mudslide); kissing Ben's sweet little face off, every hour, on the hour; saving our poor, old, faithful dog from being loved to death; teaching words and colors and shapes and what's dangerous and why, even if it is more monologue than conversation; giving baths; getting Ben dressed and undressed, sometimes more than once (You get three costume changes per day around here, mister. Go beyond that, and it's diapers for you!); and did I mention laundry?

True, I spend an inordinate amount of time traveling to and from and participating in a plethora of therapy sessions, none of which are for me (but I think that some of them should have been). I spend a solid fifteen minutes putting on Ben's orthotics and shoes, extra wide and laced so as to fit around the orthotics, rather than slipping on crocs or telling him to go and get his velcro shoes. Instead of playing at the park, we're climbing stairs to strengthen Ben's legs and improve his mobility. Rather than enjoying story time at the library, we're at home, looking at pictures of objects to help Ben identify objects by pointing. I have spent countless hours cleaning up after what I now know were dozens upon dozens (hundreds?) of absence seizures. I still put almost every bite of food in his mouth myself (unless the food is dry like cereal or pretzels, which he has down-pat), and I still have to hold a bottle for him to drink. I estimate that to amount to approximately 3,500 meals and around 3,000 bottles of milk. I am still washing bottles which should be a distant memory by now. Ben will never drink out of all of those sippy cups I saved and still can't quite toss, which brings a unique melancholy. So yes, I do a lot of things I never expected to do or to still be doing, and life is much different than it is for most of my friends. This is true. But I still consider myself a regular mom whose day tends to be mostly routine.

I might never fully get there, but I am transitioning from a mother who is weary and desperate to wish everything different into a mom who delights in every day and appreciates what a delicious, funny, adorable, loving little boy she has been given. What kick-started that transition? I suppose it was the realization that Ben doesn't know he has special needs or that he's any different from other kids. How could I do him the disservice of being sad about who he is or what he can't do? Like any mom, my job is to help him along his way, and his way is just different than I expected it to be. The despair that used to hover around the daily minutiae of life with Ben has ebbed and been replaced with an ability to savor his sweet face, belly laugh, and hard-won accomplishments. I don't think in terms of milestones for Ben; he's more of a stepping stone kind of kid, and I think that's just fine. Today might bring an extra step as he cruises laterally around the ottoman; tomorrow might just bring that first step after letting go of the ottoman that I can tell he wants so badly to try (and if it does, you will hear me gleefully squealing all the way in Kentucky)! I measure Ben today against what he could do yesterday, not against the boy down the street or his cousins or his brother. Some days, I don't measure him at all, and I just let him be.

I'm not all sunshine and roses. Sometimes, just as I'm savoring, a moment hits me with a throat punch/ leg sweep combo, and it's brutal. Just yesterday, Ben was eating pretzels while sitting in his highchair, and I was feeling mighty proud of my freshly cleaned-out pantry (Hey. Don't laugh! Getting the pantry organized to OCD standards while fending off a couple of little boys who would like nothing better than to snack themselves into oblivion is no small feat. Especially if you also spill half of the massive bag of tiny red lentils, scattering them all over three shelves and the floor. Not that I did that or anything. That's just an example. Shut up.). I glanced out the kitchen window and smiled at the sight of John pushing his red soccer ball in the baby swing. That lasted for half a second, and then I crumpled over the sink, crying immediate, enormous tears into the drain. I gazed back at him and thought, "He should be pushing his BROTHER in that swing, not a ball. He's pushing a BALL. That's the most pathetic thing I've ever seen!" Thoughts like that usually lead to all sorts of boo-hooing about how none of this is fair to John, who just wants a brother to play with him. Before I could turn and tumble down So Unfair Road, I stopped and reminded myself that John can push Ben in that swing just fine, and Ben loves it. In fact, they do all sorts of things together. Maybe they don't play tag or wrestle or fight over toys (yet), but they do throw a ball back and forth until the cows come home and they love to laugh at each other. John is also Chief Commander of Keeping Ben Out of Spuddy's Food and Water, and he takes his post seriously. Yesterday afternoon, I discovered him dragging a flat-on-his-back Ben by one leg out of the laundry room. A month ago, this would have been met with howls of protest and backhanding; today, it was accompanied by laughter and clapping. There might also have been some human consumption of dog food, but I'm going to sweep that under the rug in my mind.

Let's review, shall we? I'm a regular mom who has to do a few not-so-regular things. John is, among many other wonderful things, a thoughtful, considerate big brother who has developed an even larger capacity for tolerance and compassion than he already possessed before he had a brother. Landy (because he doesn't get mentioned enough in this blog) is Ben's biggest fan, an engaging and loving dad, and he would do anything or go anywhere to help Ben be the best Ben he can be. And Ben? Ben is a total rock star, and the rest of us are in the front row, peeling his grapes*.

*Um, yeah, Ben can't actually eat the grapes yet, but when he can, they're all peeled and ready!

Game Changer

2010-06-16T21:15:00.015-04:00

I had every intention of writing something uplifting. Something witty. Something adorable. Something non-medical. Something about puppies and rainbows. But the nitty gritty over which I am forever stumbling made a surprise appearance this month, and I have to lay it all out here, because the information we received is a game changer.

You might recall that Ben saw a geneticist a while back, and that I was not Her Biggest Fan. She gave us news I wasn't ready to hear. I never *hyperventilate* wan-wan-wanted to see her stupid face again as long *sob* as I *sob* lived! You might also recall that on that day, we tried to draw blood from Ben for genetic testing. When I say "we," I mean some trained lab technicians, not me. I still think I would have fared better than they did that day when they stuck my baby over and over again, failing to find a vein after four tries, and admonishing me to have him well hydrated next time. Whatever. You try making Ben drink when he doesn't want to. Try making him do anything he doesn't want to do, and then we'll talk. Benny Ben is more stubborn than a mule, which I contend will come in handy for him.

I went on to learn new things about Ben, spending the next many, many months entrenched in all sorts of therapy, canceling every request for a follow-up appointment with this geneticist. I figured that we had enough other doctors and that he had plenty of care. I wasn't about to cancel a therapy appointment just so we could go back to that awful place. Read: I wasn't about to disrupt our chaotic but comfortable weekly routine just so I could go and ultimately get some news I didn't really want to know. Blindly selfish? Yes. 40 lashes to me.

Cut to April of this year. We took Ben to see Dr. Alexander, the pediatric rehabilitation specialist at UNC. We thought that he could order the genetic testing, circumventing the genetics system and still getting the results we wanted to know. No. No, no, we still had to go back and see the Dreaded Geneticist. Since our initial visit, nearly twenty new genetic tests had come into existence, and we didn't want to miss anything, so we needed a new order. Well, I could hardly argue with that, so we made an appointment and went back to see Dr. Calikoglu a couple of weeks later. I had my scowl on, prepared to hate her guts and tell her that despite her glum prediction, my kid was the best kid ever, thankyouverymuch. All along, as it turned out, the jackass had been yours truly. This very dear woman was revealed to be part cheerleader, part mother, part super-doctor, and part Turkish. She told us that she was thrilled to see all that Ben was doing: crawling, feeding himself, "talking" and interacting with her socially. She admitted that she would have doubted Ben's ability to achieve those milestones had she been asked those many months ago about Ben's developmental prognosis. She kindly told us that she knew we (read: just me) had not been ready to accept or hear what would have seemed like devastating news at that time. She remembered that I asked all my questions while trying desperately to choke back tears. She spent nearly an hour with us before sending us down to have, at long last, Ben's blood drawn for genetic testing. Simple as that.

Cut to five weeks later when the results arrived. Landy and I went to meet with Dr. Calikoglu and Christi the Genetic Counselor. I don't know what I expected. Nothing new; carry on? Just as we thought: Ben is a unique genius who is just taking his sweet time? Some combination of that. What we learned changes everything, but it doesn't really change anything.

Ben has a rare chromosome disorder.

Excuse me? What?

Ben has a rare chromosome disorder.

Oh, well, we love rare disorders here in the Townsend family, so bring it! But could you be more specific, please?

Sure. Ben's karyotype (description of the chromosome abnormality) is 46, XY, del 6q25.3qter. Get it? For all you genetics junkies out there, what this means is that on the long arm (q) of Ben's sixth chromosome, everything at and after the band at 25.3 is deleted, also called a terminal deletion. Twelve million base pairs never showed up for Ben's birthday, resulting in about 79 missing genes. To paraphrase my dear friend Jules, those base pairs can just rot for deciding to skip the party that is Ben Townsend. Their loss. While I'm at it, I'd like to extend a dirty look to nucleotides, double helixes, DNA, RNA, ACGT, ribosomes, and everything else I vaguely remember from Cell Biology.

Despite my scathing diatribe (It was a lot more scathing before I censored it to protect your delicate eyes!) regarding all things chromosome, I'm actually at peace and relieved to know why Ben is Ben. If you want to know more about being a member of the ultra-exclusive 6q disorder club, peep this. If you know our youngest at all, you will find yourself smacking your own forehead and muttering, "Son of a biscuit, that's Ben."

Seizures? Check.

Developmental delays? You know it.

Microcephaly? As it turns out, yes. And I'm okay with that.

Strabismus? That's us!

Suddenly, just when I had been thinking that knowing WHY wasn't all that important, someone dropped a THAT'S WHY in my lap. I'm sincerely glad I know. Every single challenge Ben has faced, with the exception of the Pepsi Challenge, has been secondary to this chromosome deletion. So that changes everything, right? Yes, it does. We are no longer focusing squarely on PH; we accept that Ben has microcephaly; we are not agonizing over his lack of progress in expressive speech; we are no longer concerned that John could also have PH. Why are we no longer concerned about John? We know (with near certainty) that Ben's chromosome deletion was a de novo occurrence, meaning that both Landy and I have normal chromosomes, and this was a fluke. Ben is the 40th documented case of this specific deletion. Ever. Anywhere. He's truly one in several million, give or take.

What will we do differently? I think that anti-seizure medication is imminent, whereas before we didn't anticipate having to even think about that until his pre-teen years. Other than that bouquet of roses, not much will change. Ben is still the same kid he was the day before we received this diagnosis. He will continue physical, occupational, speech, and feeding therapies. We will keep climbing up the stairs every day. Ben will still start school in September. Ben will carry on with being a schmoopy woopy sweetie baby boo boo punkin' pants.

So, as Landy and I were preparing to leave the Genetics office following our most recent visit, Christi mentioned that she and Dr. Calikoglu always discuss the day's upcoming appointments. Back on that day when Ben's actual testing took place (the day when I finally relented and agreed to go back), Dr. C had softly told her, "I think they are ready now." I love that woman.

Looky here! I managed to slip in something uplifting and adorable:

Let the Meeting Come to Order

2010-04-18T10:36:00.023-04:00

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.

So I Wrote This Letter

2010-04-06T15:12:00.009-04:00

I recently wrote an impassioned letter to a pediatrician in Chapel Hill. She hasn't accepted new patients for some time, but I had a feeling that if I could just get through and tell her Ben's story, she would suddenly clear her entire schedule and devote her life's work to him. That might have been a bit of a reach, but I do think that she might make an exception for Ben and take him on as a new patient.

Why, oh why, would we need a new pediatrician for Ben, you ask? I'm just too upset to go into great detail, but I'll say that we've been somewhat deceived for the past several years. Ben wasn't getting the special needs service we believed he was receiving from his pediatrician. As we grew increasingly frustrated with a lack of communication and drawn-out promises that never materialized, we dug a little deeper and were dismayed to learn that a physician in whom we placed so much trust hasn't been the source of knowledge and specialized care we believed him to be. Frustrated, LT did some research and found a Chapel Hill pediatrician named Jennifer Lail, who has a special interest in developmental issues and serves on several related boards. Sounds good, no? Then we noticed that she was a native of Lexington, Kentucky. What?! Oh, if we took Ben to see her, we could talk basketball and everyone would be so happy. We continued the vetting process and turned over only one dirty rock: residency at Duke. As long as she's not a Dookie, we'll be fine. I can admit that is a fine school of medicine. But where had she completed undergraduate study? We couldn't believe our eyes when we saw that she was a fellow Transylvania Pioneer! There's our in! She will love us! We'll be the best of friends and have cookouts and start attending church together. She'll save us seats in her pew, we'll go see shows at the DPAC together and attend Durham Bulls games. We'll meet for afternoons at Duke Gardens, and then we'll go in together to purchase vacation property in Emerald Isle. Ah, it will be so fabulo- what? - Really? She's not accepting new patients?

Not to be dissuaded by some obstacle like a statement of fact, I put hands to keyboard and crafted a letter I hoped could sway the hardest heart. (But seriously, look at her. I think her heart is fairly soft.) I still had no idea if she would ever see the letter, but fortunately for us, we had a little help. Thanks to Natasa Pajic, Transylvania University Director of Alumni Programs and fellow '96 graduate, who knew the doctor and agreed to pass on our letter personally. Without that help, I imagined the many channels that our letter would have to travel and felt skeptical that our letter would ever have been seen by Dr. Lail. Thanks ever so much to my high school English teachers, particularly the forever lovely Phyllis Becker, who cultivated a lot of desire to write creatively and effectively and helped me turn a smidge of talent into, well, this:

March 29, 2010

Dear Dr. Lail,

Although I understand that you are not currently accepting new patients, I am writing on behalf of my younger son, Benjamin, in hopes that you will consider taking him on or that you will notify us when you do decide to accept new patients.

Please allow me to introduce our sweet little boy, Benjamin.

Ben will be three years old on May 8. He is a happy, strong-willed boy who loves dogs, hugs, pretzels, strong wind on his face, his brother (usually), and any toy that involves a ball. He also has a rare neurological condition called periventricular heterotopia and is significantly developmentally delayed in all areas. In addition, as far as we know, his case is unique. We haven’t yet found anyone quite like him. The population of people who have PH is very small, and within that, the population of those who have developmental delays appears to be microscopic.

Ben cannot walk independently but has been scooting around for several months and recently began crawling. He received his own AFOs just one week ago, and these are proving to be helpful. We are hopeful that he will walk, but we realize that it will take a long while and a great deal of hard work before that happens. He does not talk but has consistently said “dog” and “Gon” (John, his brother) for nearly two years, with a few other words that ebb and flow in his usage. He laughs appropriately and heartily, and he sometimes babbles strings of the few sounds he makes. He is learning sign language and has made great strides in his receptive language following the recent insertion of ear tubes, which seem to have relieved the almost constant ear infection/excessive fluid cycle. We are hopeful that an expressive language breakthrough won’t be far behind. Ben still drinks from a bottle, but we are working diligently to have him drink from it independently and to transition to a cup. I think this might take longer than any other milestone. Ben is extremely orally defensive. We were unsuccessful in getting him to eat pureed foods until he was close to a year old. Much of the food he eats now is still pureed, although his excessive gag reflex has subsided and he can now tolerate more texture. Brushing his teeth or administering oral medication is an exercise in patience and is very difficult. Ben’s relative strengths are his strong receptive language skills (for example, following two step instructions such as, “Get the box out and then close the door.”), his problem solving skills, and his fine motor skills.

Ben has benefitted immeasurably from his numerous weekly therapy sessions, including twice-weekly physical therapy, occupational therapy, developmental therapy, speech therapy, and feeding therapy. He has seven weekly appointments, not including specialists, or if someone gets sick and throws off the whole show! Therapy has helped resolve muscle tone issues and torticollis; the resulting plagiocephaly was mostly resolved by use of a Star-band helmet, which he wore for approximately ten months, until he was about 16 months old.

Our greatest concerns for Ben are for his future, obviously, but we feel that there are immediate needs that we must address. His intermittent strabismus seems to have gradually subsided as his entire body has grown more coordinated, but it is still present and noticeable enough to cause a failed vision evaluation with Wake County Preschool Services. Rather than simply continuing to see Ben’s current ophthalmologist, who has never seen a child who has PH, we desperately want to know if there is a pediatric ophthalmologist who might have some experience with another child who has had PH diagnosed as early as Ben. I don’t know if there is anybody out there who meets that qualification, but we are willing to go anywhere to get some answers and to be certain that we don’t pass an ideal window of time to treat whatever causes this, if there is anything that can be treated.

Ben also has frequent episodes of unexplained vomiting. Normally these occur during his naptime, and less frequently while riding in his car seat. We realize that there could be a simple explanation such as reflux, but more than one therapist has expressed doubt that at his age, this could be such a frequent and sometimes huge problem. Ben has had two EEGs and is scheduled for another one in May to coincide with his next neurology appointment. The past results have indicated no seizure activity. Ben has had a complex febrile seizure. We know that seizure activity will occur due to the PH, but that shouldn’t happen until he reaches pre-teen years. We understand that, due to his condition, his threshold for seizure activity is quite possibly lower than the average person’s. We very much want to discover the reason for these episodes and know if we can prevent them.

Of all of the different physicians and therapists who see Ben, we have a wide range of opinions about the size of his head. Only one made his first words to us, “Ben has microcephaly. He will never be normal.” You might imagine how difficult that was to hear when we only went to have genetic testing performed, not to hear a diagnosis. Hearing that, however, led us to question everyone else. So far, although his measurements do not reach that third percentile mark, his head is growing on its own curve. With differing degrees of certainty, the general consensus seems to be that as long as that growth continues and Ben continues to show developmental improvement, then it is too early to diagnose microcephaly versus just having a small head.

I have discovered some research that suggests that people who have PH have an increased risk of sudden cardiovascular problems. Clearly, that is disconcerting information, but I have found that there isn’t much associated research and wonder if I can find more information. If Ben needs a cardiologist, I need to be on top of that.

We decided to search for a new pediatrician for Ben as we have grown increasingly dissatisfied with the care he has received at his current practice. As time passed between visits, we would feel excited about what would be lined up or suggested to us at his next visit. For example, last summer we were promised an appointment with a pediatric ophthalmologist in Atlanta who Ben’s doctor felt had seen patients like him before and would give us valuable insight. After much go-around and communication with the referral nurse, she told us that Ben’s pediatrician informed her that “it probably isn’t going to happen.” He said to her (not to us) that he had a couple of other ideas, but nothing has ever materialized. Meanwhile, we are left without current vision exams, which is not only frustrating because we would like to know more about his vision, but also because this lack of communication has resulted in delaying Ben’s evaluations for preschool services. I don’t know how much of a gap will occur, but I do know that there will be a detrimental lapse in services for Ben as he phases out of the Infant-Toddler program. Follow-through with other issues, big and small, has been lacking to non-existent. While we initially believed that the staff just wasn’t doing anything to help us, we now have reason to believe that the fault lies with Ben’s pediatrician.

Fed up, my husband stayed up late one night and did some research in order to find a new pediatrician for Ben. He discovered your practice’s website and left your profile for me to see. We were thrilled to see that you are so active in the special needs community! We were pleasantly surprised to discover that you are a Lexington native. My husband is from Owensboro; I am from Henderson. We were absolutely elated by the discovery that you are a fellow Transy alum, and we immediately agreed that this was just too good to be true! You can imagine how disappointed we were to finally discover that you aren’t currently accepting new patients.

I hope that you will consider our request and see our son, Ben. We plan to take him to Village Family Care here in Wake Forest for minor illnesses or infections, but we are hopeful that you will see him for his well visits or developmental assessments. We have quite a team of physicians and therapists looking out for Ben, but the missing, crucial component is a very skilled pediatrician who has a passion for developmental issues and special needs children. As Ben’s medical and developmental advocates, we will not rest until we know that we have left no stone unturned in the search to find answers about what will help him most and what we must do to prepare. We do understand that we’re blazing a trail and that answers will be difficult to find as his condition is so rare, but that doesn’t mean they don’t exist. Perhaps we could even be of some assistance or support for some family out there, feeling the same as we did for many months. As Ben’s parents, we desperately want to know that we are giving him every advantage we can find, that we won’t look back ten years from now and wish that we had tried harder or had done more. We hear a lot of “I just don’t know. Come back in six months.” We understand that rare disorders and diseases aren’t that easy to explain, but we are no longer willing to bide our time, and that answer just isn’t good enough any longer.

Thank you for taking the time to read about our son and for considering making room for him at your practice. I have tried to make a very long story medium; numerous other tests and procedures have been performed on Ben, the results of which, when pieced together with what I’ve explained here, I am confident can show us our next step. My husband and I, along with our six-year-old son, John, love Ben to little pieces, and we think that you will, too.

Very gratefully yours,

Allie Sheckels Townsend ‘96

Cleveland S. (Landy) Townsend ‘94

You know, I like to think that it was the careful crafting of this letter that persuaded Dr. Lail to consider making an exception to her No New Patients policy, but if I had to put odds on the reason, I think it was probably the picture of Ben's sweet little face. Heck, she might not even have read it at all!

At this moment, I am waiting for the 5:00 hour, when I am expecting a call from Dr. Lail to discuss our options and learn if she is, indeed, willing to take Ben as a new patient. Fingers crossed.

The Griswolds Invade San Diego

2009-11-18T00:59:00.041-05:00

Back in October, Landy and I decided to take John on a special trip to San Diego to coincide with a business trip. I was very nervous about leaving Ben so soon after his seizures, but I took comfort knowing that he was left in good hands. The three of us went out for a few days while Ben stayed home with his grandparents, maintaining his therapy schedule and happily being the center of attention! We arrived late at night, checked into the Westin in the Gaslamp District, and plotted our daily activities. We decided to try one major attraction each day, and that worked perfectly. I love San Diego so much that I could live there. I especially like the way that someone comes and makes the beds and brings fresh towels. Oh, wait. Well, never mind. But I still love it!

Day 1: San Diego Zoo

This was the best day!

In case you were wondering, this is what an $11 diet Coke looks like.

He really wanted to eat us for lunch, but he was too lazy to move the entire time we were there.

It may be difficult to see, but that is a panda sleeping in a tree as if she had taken four bear-sized Ambien. Oh, how I envy that panda.

Beginning our first ride on the Skyfari. After refusing to ride most of the morning, John suddenly announced that he wanted to after all, so we rode it three times. There is no making this kid do anything he doesn't want to try. You have to lie in wait, and he'll come to you. Control issues - I have no idea where he got that.

The littlest elephant taking a bath.

Right after I took this picture of this young giraffe chewing on a railing, his mother galloped over to him, scolded him about germs and H1N1, and doused him with hand sanitizer.

Booooo, Bengals! That's for you, Aunt Laurie and Uncle Matt!

Day 2: Legoland and La Jolla

No, no, THIS was the best day!

For six year old boys, the happiest place on earth might not be Disneyworld.

John practicing for Halloween as Obi-Wan. Yes, I made him wash his hands every time he touched that thing (four times, not that I was counting).

John found this lego dog and wanted me to take a picture so we could show Ben.

And there it was. That tug at my heart which I try to ignore much of the time so as not to allow it to overwhelm me. It's a feeling that is constantly present, of course, but I usually like to stuff it in a bottle, cork it up, place it in a box, wrap the box, and hide it in my inner closet. This time, I had to inhale sharply and bite my lip before I could smile and snap a picture. I don't think that John needs to know the depth of the pain I feel when we have fun family outings such as this while leaving Ben behind. Many things touched me so very deeply about the story behind this seemingly innocuous picture. Very simply, John noticing something that his brother would like and wanting to show him is enough to be heartbreakingly precious in my world.

Then there was the fact that Ben was 2,000 miles away; our family was not complete. Yes, I know that even if Ben were like other 30 month old boys, he still would not necessarily be at the ideal age to visit this place, but there is no rational thinking in these situations. There is only wondering and hoping and wishing and abandoning the pledge to take each day as it comes. That gives way to wondering if Ben will ever be able to join us, racing around the park, begging to ride each ride with his own voice... with actual words. Walking with his legs... without help. All of his whims being shamelessly indulged by his grateful parents, brother, grandparents, aunts, uncles, cousins, who would naturally all be there to celebrate that we could all do this together, that nobody needed to stay behind to take care of Ben...that things could be as they were supposed to be.

Then there was gratitude for the big sunglasses that could disguise silent tears before John knew that his mom was in pain. And ultimately, there was a roller coaster that needed to be ridden, and so I sucked it all back in and raised one hand in the air, held the other arm tightly around John so he wouldn't be scared, savored his face as he had a completely new experience, studied the way the corners of his eyes crinkled and how his muscles contracted as we rode the big hill up, anticipating the big drop to come. There. Back into the land of taking life one day at a time. Remembering that I have to take that approach with John as well. Recalling all the days we had together in his first three years when he was the center of our universe, how we didn't realize that they were really so very carefree; regretting each day that has passed in a blurry haze since. And I don't mean that I regret the days themselves, or Ben, or any of it. I think I probably feel like any parent who has felt guilt over time lost with the firstborn after the arrival of the second, but I feel it to the nth degree. I just regret the blurry haze. Sunrise, Sunset.

John and his friend, Spongebob, who isn't allowed to come over while Ben is awake. I don't need Ben's first words to be, "Oh, barnacles!" or "I anything can't do right since because pickles!" or "Oops, I split my pants!" or anything of that ilk.

John posed with Mom's hero circa 1983, his own hero present day.

Beetle Bounce, what we thought would be the last ride of the day. We rode three times! Those seats are clearly not made for grown people. From our lofty vantage point atop the Bounce, we spied the LegoTechnic roller coaster. After spending the full day adamantly refusing to set foot on or near that ride, he declared that we should go there next. Well, alright.

After departing Carlsbad, where we stopped and bought new jeans for a certain someone who may have wet his little pants on the LegoTechnic! And then he may not have told us about it until after he rode it one more time. Sorry to the next person in line for our seats...

And then we stopped in La Jolla, one of my favorite places. Beautiful, chic, relaxed.

Day 3: Sea World

This was unanimously voted the very best day! Truly.

Fascinated by being able to reach out and touch rays as they glided gracefully by us in a shallow pool, John came back to this attraction three times. "Slimy mushrooms" - a surprisingly apt description from someone who wouldn't touch a slimy mushroom if his life depended on it.

John has a serious love of the skylift, and San Diego did not disappoint. The one at Seaworld glides back and forth over Mission Bay and is lovely. I expertly hid my white knuckles and buried the anxiety caused by the implications of the command to "sit to this side" under my plastered-on smile, because this! was! fun! Really.

See?

I don't care what you call him or how many there are, that's Shamu, and he's as wonderful as I remember him to be. And just as I was settling into the special sort of reverie that happens when witnessing some nostalgia one hasn't seen in over thirty years, my husband leans over and whispers to me, "You know that every time one of those guys rides Shamu up into the air like that, he thinks, 'Please don't kill me. Please don't kill me.'" Oh, that Landy. He's very practical and probably also correct, but he needs more art. In his defense, the situation might have been reversed. There may be a time or two when we've attended a baseball game, Landy waxing poetic about a childhood memory like James Earl Jones in Field of Dreams, while I wonder aloud why every game I attend results in extra innings. Please don't get me wrong. I love baseball, but I think the games are long enough, don't you? I would prefer a Sudden Death Homerun Derby over extra innings. Think about it, Mr. Selig.

This is the Journey to Atlantis. From this angle, it appears to be merely a roller coaster. Um, no. At the beginning, there is a 60 foot plunge into a lake. John was brave after riding the Legoland roller coasters the previous day, but this one might have him swearing off amusement parks for the rest of his life. This is the only ride that made him say, "I don't want to do that again."

After three consecutive nights spent dining at California Pizza Kitchen, I could take no more. We risked life and lung in order to dine at an actual restaurant in the Gaslamp Quarter. We all walked to La Strada, a place that appeared busy enough to be good, but not too busy to quell our food allergy fears.

Success! John ate all his noodles and most of the chicken with nary a hive nor a rasp, and the good boy from North Carolina by way of Kentucky was rewarded with a delicious milk-free dessert!

The next morning, John and I got up early and caught our flight back to North Carolina. We had a brief layover in Phoenix, just enough time to find something milk-and-peanut-free for John to eat and grab a book at the store. The second leg was obviously a long one, so we first had a pitstop in the restroom. John is getting to the age when he is unsure if he should be in the bathroom with a bunch of women, but I'm not ready to send him in alone, so I took him in with me. We found the handicap accessible stall available, and anyone would agree that is preferable to maneuvering around a single with a six year old and two carry-ons. Little boys go first, of course. Then I stood him in the corner, admonished him to "touch absolutely nothing or you'll get the swine flu," and proceeded to carelessly yank my insulin pump right out of my skin. This is painless but annoying. And then I realized that all my supplies were in my checked baggage, I probably had high blood glucose, and suddenly I had no way to get insulin. Very Griswold-y.

Before I could either panic or buckle down and decide to remedy my predicament, I heard a loud "AHEM" from outside the door. I quickly gathered our things and hustled us out, and we were greeted by a grumpy lady standing behind her wheelchair. I offered an apologetic smile with a nod toward my son rather than the "It says accessible, not reserved" speech a la Larry David that I so wanted to deliver. I had other things on my mind. I walked to the darkest corner I could find, used the light from my pump as a flashlight, and inserted the cannula right back into my skin before it began to close. Yes, I know, ewww. Modesty and queasiness left me long ago, so I apologize if they've stuck with you over the years, dear reader.

We dashed to the nearby Brighton store, where I asked if they had a band-aid to spare. Well, they didn't have any of those, but they did offer Scotch tape. That'll do. I MacGyvered that pump site right up and said a quick prayer that it would hold until Raleigh. And also that I wouldn't get a staph infection. And that this kind of crap could please just stop happening. And that if it had to persist, then could I at least get a new pair of exorbitantly priced, fabulous, new shoes on huge sale every once in a while? And then I stopped, because I had obviously left the realm of actual prayer.

John and I raced back to our gate, where boarding for the A group had already occurred. We had fairly high B boarding passes, but I just marched him right up to the door and took the families traveling with small children opportunity for those traveling with kids four or under. Yes, John is six, but I was fully prepared to give the icy, "Don't even ask me how old he is" stare combined with the "You do not understand what just happened to us" look of woe. It was unnecessary. And whatever, I totally deserved to go ahead and sit down after all that, right? Then a woman sat next to me for the next four hours, eating her homemade roast beef and spicy mustard sandwich, leaning her elbow completely over the armrest and into my seat, and filing her fingernails. Oh, alright, karma. I get it. Now would you please stop being such a b!@$%.

Harrowing

2009-09-18T19:13:00.036-04:00

This shot of Ben and his sweet, sleepy smile belies the reality of the day it was taken, and certainly that of the day before. What's up with that crazy hair, you ask? Well, Ben's hair was still covered in sticky goop and red grease pencil immediately following an EEG at the hospital, where he prefers to go sans absolutely-pointless-at-any-age gown, thankyouverymuch. What? An EEG? At the hospital (or hostible, as John would have said until pretty recently)? Why? Well...that's a long story. Just don't say I didn't warn you.

Wednesday. Ben's speech therapist was on vacation, so I thought we might have a day to do whatever we pleased, but we had a meeting with the PTA president to attend instead. It was at her house, and Ben played with her kids and loved their dog, so it was still a treat to do something different. Later, at home, I thought about heading to the grocery, but something told me to just stay home and take it easy since John gets home early on Wednesdays. As I made that decision, I looked at Ben and realized that he looked very sleepy. It was early, so I quickly put him in the highchair to give him some lunch, dreaming of catching an hour to myself if I could get him down for a nap early. Well, darn if he didn't refuse every bite I tried to offer him. He did eat a few bites of Cheerios, but I soon realized he wasn't going to eat anything else. Figuring I'd missed the window, I told him to hold on while I stepped into the bathroom, and then I would take him upstairs for a nap.

Barely had I closed the door to the bathroom when I heard what sounded like choking. I ran back out and saw that Ben was vomiting, and that it was also coming out of his nose. As I grabbed the paper towels to catch and clean, I noticed that Ben was tilting his neck back. I remember thinking that was an odd position and that he must be very uncomfortable, so I gently leaned his head forward a little and wiped his nose and mouth. But then he didn't raise his head. Not even a little bit. Panic began to creep in, but I was still thinking, "Oh, gosh, I've never seen him so tired." As I lifted his chin, I quickly realized that he wasn't breathing. And then things went from bad to very bad to unimaginably horrifying.

As Ben's lack of breathing registered with me, in a millisecond, his mouth and the skin around his eyes began to turn blue. Of course I thought he was choking. I yanked him out of that highchair as fast as I could, also a millisecond. I ran over to the sink and tried to dislodge whatever I thought was stuck. Nothing. His entire body was limp and lifeless. I turned him to face me, and the blue was bluer. No breathing. Totally unconscious. Panic.

I grabbed the phone and dialed 911 as I continued to try to get a response from Ben. This moment was the most horrible moment I have ever endured. I recall with clarity thinking, "This can't be happening. My baby is dying right here in my arms. Why can't I fix him? What am I going to tell Landy? What am I going to tell John? How can I go on living without him?" I swear all those thoughts raced through my mind in one second flat. Thinking I needed to start CPR, I decided I needed someone to help me, so I started screaming my neighbor's name while I was still in my own house. I was operating on automatic pilot as instinct took over, and I darted out of my garage door, still screaming, "Renee! Renee! Renee!" All the while, I still had my phone in hand, not thinking I had connected with 911. As we reached my next door neighbor's sidewalk, Ben began to cry. I nearly dropped to my knees right then. I banged on Renee's door, still screaming, and she answered almost immediately. She took Ben from me and listened to me cry and talk all kinds of crazy, I'm sure. She was so calm. We decided, since Ben was conscious and breathing but lethargic, that she would drive us to Ben's pediatrician. She kept holding Ben as she told me that her sister-in-law, Kathy, could come over and get our kids off the bus. She called Kathy as I turned off my phone, and everything was better then. I really think we would all be better off if Renee were running FEMA. The construction workers across the street, to whom we formerly gave dirty looks every morning for parking their big ol' white vans right across from our driveways, raced over to ask if Ben was okay, if I was okay. They are now our best friends, and they have since even started parking in the lot. I love them. They may park in my driveway if they so wish.

I called Landy, who was having lunch with colleagues, and blubbered that I needed him to come home, and Ben, and home, and *sob*, Ben'sfine, Ben'sfine, home, *sob*.

As we were buckling Ben into his seat, up drove a Wake Forest police car. With two officers. One exited the car and told me, "We had a 911 call from this residence." As I began to explain about Ben and that I didn't realize I had connected, he also told me that it had been reported as a domestic disturbance. Um, oops? In hindsight, all the operator heard was, "RENEE! RENEE! RENEE!", a crying baby, and banging on a door. Uh, yeah. Oops. He suggested we go ahead and have EMS come to the house. I started to say, "Oh, no, that's okay, I've got it all under control." Because that's the kind of dumb stuff I usually say, of course. But I listened. I agreed. He called. Thank God.

Before I knew it, there were no fewer than eight large, sweaty men in our family room. Police officers, EMS workers, firemen. I think it was quite a spectacle out on the Drive... I don't know; I was squarely focused on Ben. Maybe .0005% of my attention was given to wondering if John would have a place to go after he got off the bus, and whether the bus driver would let him go with any of the gaggle of moms waiting just down the street. Mostly, could we get this logjam out of here before the bus came barreling down our street, past our home? This was not a scene I wanted John to witness.

Oxygen. Stretcher. Carseat on stretcher. Ambulance. Questions. I think at one point, a fireman climbed aboard the ambulance and asked me some questions about Ben. I don't even know what I said. He might have asked me for my credit card number and my high school locker combination, and I might have given him Landy's SSN and my children's combined birthweight (20 lb. 13 oz. That's correct. I have only two children. Yes, I know.). Ben's oxygen level steadily rose from 85 to 99, but that took longer than they liked. 85 is not good, y'all. I know this from plenty of experience with his respiratorily challenged brother, and I have never seen John's level drop below 89.

Landy met us at the WakeMed Children's ER. After all the tagging and registering, we waited to hear what tests would be performed on our sweet boy. It wasn't long before I took Ben to have two chest x-rays. He was a champ, probably because he was exhausted from the seizure, too sleepy and confused to resist, and soon we were back in our room. We had been there for a little over an hour, and Ben was happily snuggling on his Daddy's shoulder. Landy suddenly, urgently asked if Ben was gagging. Yes. Yes he was. I stuck my head out of the door and saw that nearly every doctor and nurse on the floor was next door to us, where a boy younger than Ben was coding. Yes, that was scary stuff. (You'll be relieved to know he eventually pulled through!) I was promptly stampeded by five nurses and one doctor, just as I turned to look at Ben's face and saw that same terrifying limpness as the blue set in around his eyes and mouth once again. Crap.

The second seizure was nearly identical to the first and was just as short-lived in actual time, but as any parent who has ever felt utterly helpless surely knows, the time seemed to stretch on endlessly. The very lovely doctor, who I suspect may have been an angel as I never saw her before nor after her time in the room with us, helped Ben through his seizure and reassured us all at once. There were so many people in the room that we couldn't get near him. We just stood near the door, holding on to each other and peering over shoulders. As Ben's seizure ended, that angel doctor made certain that mine was the first face he saw when he awakened. I needed that probably more than he did.

The medicine administration and tests came rapidly after that. IV inserted, monitoring tabs stuck here, there, and everywhere. I defy anyone to find a PulseOx (with the red lit dot that goes on your finger, or in this case, Ben's toe) that my son cannot rip right off and toss across the room. Go ahead... tape it, wrap it, glue it, staple it if you like. It's coming off, so good luck with all that. Blood cultures, Tylenol suppositories (which thankfully melt almost immediately), CT scan, spinal tap. That's right...spinal tap. And that crazy Dr. Doogie brought only one nurse with him to subdue Ben. Knowing that Ben needed to remain very still, I felt obliged to inform those fools that my son is very strong, much stronger than he appears to be. I got an, "Oh, don'tcha worry, honey, I got this." The second Ben tensed, I then got an, "OH, Mama, you better come over here and help me!" I swear. Why doesn't anyone listen to me? Don't you know what happens when you don't listen to me? That's right. Something bad. Oh, sorry... lecturing a six year old child of strong will occasionally carries over into other areas of my life. At any rate, I was the lucky person who won the chance to be face to face with Ben as a big, nasty needle of pain entered his spinal column. Awesome. He doesn't seem to be holding it against me, thank goodness.

I cannot describe the relief we felt upon learning, one by one, that each of these tests provided a negative result. That meant that Ben had no cardiac infection, no meningitis, no other nasty, horrible, fever-causing infection requiring an extended stay and a ten gallon bucket of broad spectrum antibiotics, IV style. Whatever the root of the problem was, it was probably minor and common. Because Ben has periventricular heterotopia (Or peventrical heliotoma, as our discharge nurse said. You know, whatever...), we do expect him to have seizures eventually, but not during the next ten years or so. His condition does give him a lower than average threshold for seizure activity, so I am just keeping my fingers crossed that he will remain healthy and we won't face any more episodes such as this. I also pledge to stop using my hand as a thermometer and to just go out and buy a real one, and I also intend to make Children's Motrin my best friend if I must. Because I don't ever want to do this again. Please.

I also cannot describe how sleeping in a hospital bed with a toddler can be so torturous yet so fulfilling. Maybe it was just because fewer than 12 hours prior, I had thought that Ben was gone. There he was, breathing and eating and sleeping and crying, snuggling his head close to mine, and backhanding like Ike Turner. I didn't mind. At around 2am, his nurse came to check on him, and I told her I was concerned about falling asleep and failing to prevent what I felt was the inevitable IV-rip-out. Not to worry! She had THE solution! Really! It never fails! She wrapped a newborn size diaper around Ben's right hand like a boxing glove, rendering it useless in his battle against everything attached to his body. Ben and I each slept in spurts, and we awakened for good at around 6:30. The good news was that the IV was still intact and all those monitors were still in place. The diaper glove was at the foot of the bed, and the PulseOx was on the floor. That's my boy.

After getting John off to school despite a fruitless search for his shoes (which were located 5 days later IN HIS CLOSET), Landy returned to the hospital bearing more interesting toys and Ben's very own bottle. He drank a full cow, and he also ate 3 little boxes of Cheerios. Good. IV out. Ben still needed his EEG, and then we would wait for the results and hope to go home after that. Ben has had an EEG before. Piece of cake! Smiling and laughing the entire time, falling asleep easily when he was supposed to, waking up happy. The rest of this was going to be pretty smooth sailing, yessirrrrr... Ehhh, notsomuch. The poor technician said that the entire procedure would take about an hour, but the Neurology Department very nearly sent out a search and rescue party as she remained in our room for the next 2 1/2 hours. Ben kicked, cried, screamed, and sweated so much that the nodes were falling off of his head faster than she could attach them. At some point, I think she figured it was good enough, wrapped his head in gauze, and started the readings. It had taken four adults to subdue Ben, and as we finished, we all backed away, licking our wounds and knowing that he could have taken out any one of us at any time. As we looked back at our precious little tyrant, we saw that he had transformed back into a precious, sleeping, exhausted baby boy.

We waited. Waited. Waited for another 7 hours before we were able to go home. Would you believe that the neurologist on call just happened to be Ben's very own neurologist, Dr. Rathke? He said that Ben's EEG was normal and didn't show anything that was unrelated to his PH. He prescribed a rescue medication to be used if Ben has another seizure, but we will not have to give him anti-seizure drugs. Not yet. Check back with me in 2018 or so. This time, what Ben had were complex febrile seizures.

Landy, Ben, and I arrived home at around 8:15 that night, John came home, and we all stayed up a little too late. We were nervous about putting Ben in his crib, closing the door, and leaving him alone. Rationally, I knew that Ben would be fine, and that if another seizure should occur, I was prepared. I checked on him every hour. When the matter is your child's health and well-being, there is no sense trying to be rational. Crazy, heart-bursting, overwhelming love is really all that counts.

We want to thank everyone who helped our family, including the emergency responders; all the doctors and nurses at WakeMed who worked with Ben; our neighbor Renee, who watched John, fed him, and just generally made everything better; our neighbor Ivy, who fed John supper and knew exactly what to do when he wasn't breathing well, and who would also know what to do if John ever ate anything he shouldn't (he didn't, but I like having that comfort when I can't be with him); our neighbor Tracy, who took the second shift from Ivy so that poor girl could get some sleep; our neighbor Amy, who made us a scrumptious supper; and all of our family and other friends and neighbors who called, emailed, or just prayed for Ben. Thank you so, so much.

Totally Random Gratitude...Try to Follow Me

2009-02-17T20:33:00.028-05:00

I've been thinking quite a bit about gratitude. Gratitude is usually bursting at the seams for me, but sometimes it gets overshadowed by everything else that feels to be bursting at the seams. How I became so fortunate, I'll never know. I decided that I should share a teeny tiny fraction of the people that make me feel that way. There are so, so, so, so many more...so don't feel slighted if you aren't included. I either don't have a picture of you or I'm saving you for another time...but chances are that if you are reading, then I'm grateful for you, too!

I'm grateful that I have a mom who is great with my kids and likes to teach them about nature, and I love that John is just as fascinated as she is by all the different seeds and leaves and bugs that are just waiting outside! I'm also grateful that she always tells me that I'm going to be just fine, even when I know she'd probably like to have a good cry herself. (I don't have a picture of that.)

I'm blessed to have in-laws that make me so comfortable. I love all of them so much! I hope they all know that. I love having a special bond with Laurie, because I never had my own sister. I love how she loves my kids.

I love that I have this picture from John's 3rd birthday to remind me of how he sobbed and sobbed every time he heard Happy Birthday being sung until he turned four, and even then it was touch and go. I'm not sure I would have remembered that, and it is a precious little memory.

Oh goodness, I'm grateful for new(-ish) friends. I'm including in that group anyone I've met since our most recent move to NC. In the picture above and in the one below are a bunch of my favorite girls in the world. They support me, they make me laugh, they pour my wine, they help me more than they know, and I love them all. There are several not even pictured, and can you believe that these are all just my neighbors!? Lucky, lucky me...

I am lucky to have wonderful "old" friends - they are not old...none of us are! - the ones Landy and I have known since we've been together. The ones who stayed up late with me in the dorms and have been there for so many important events in our lives. The ones who don't mind if I put my bare feet on their sofa...

My husband. Do you know him? If you do, you might like him better than you like me...he's pretty wonderful! Let's just say I'm more grateful for him sharing this life with me than he knows, and I'm glad that we're muddling through and celebrating moments together.

Again with the old friends...they are never far from my mind!

And then there are friends you've known so long it seems like there was never any part of your life that existed without them. Just knowing that you have someone just a phone call away, and that phone call could come at 4 am and it would be alright. That's my girl, Noelle, and she's one of those kind of friends.

Before reading any further, please know that the following picture was taken in 1995. Proceed...

I'm thankful for my friend, Leigh. If you know her then I'm sure you are thankful for her too. She's pretty fantastic! You might not believe this, but the day - the VERY DAY after Ben's appointment with the geneticist, and there were failed attempts at drawing his blood, and there was no nap, and there was an older son picked up from school by another dear friend and also some much-needed wine waiting for me - this card arrived from sweet Leigh:

Inside it says, "Hope it's pie soon!" and a bunch of other stuff I can't tell you because I'll cry and don't feel much like crying right now. In hindsight, I shouldn't have read it before taking John to a birthday party full of new friends and moms I didn't know well. There was blubbering and there were incoherent attempts to make small talk. I thought that it was pretty amazing that on the day I needed it most, kindness came from a place I hadn't been looking.

HOW did she know??? Thanks, Leighbo... And I'm sorry for the time that I taped you and Wendy into your room. Oh, alright, I'm not sorry. That was funny.

I'm incredibly grateful for this little boy, John. I'm grateful for having a back I didn't know could feel that sore. I'm grateful that I nursed him for 16 months, because I always assumed that I'd have the chance to do that again but haven't yet. I'm grateful that, at 5 weeks old, he was fine when I fell asleep and dropped him out of my arms from the bed to the floor. I am grateful for quiet moments with him, watching him learn and do when he was very small. I'm grateful for all that time we "spent in Italy". And I'm grateful for all the extraordinarily loud moments we have now, although earplugs would be nice sometimes, thanks. I'll just nod and smile.

Not every moment is pull-your-hair-out crazy, mind you. One recent night, that little fella decided to clean the table and set it for supper before Daddy got home. I lit the candles and he set all the places. Ben isn't really at that stage yet, but it's all about presentation, you know!

Well, look at that. Yes, I know you probably can't read it...I'll decipher. On each napkin, John wrote, "I am thankful for God." If you just so happen to have ever enjoyed the funniest TV show ever, Arrested Development (only the cool kids liked it), then you might agree that it could possibly read, "I am thankful for GOB." Of course, if you watched AD, you also know that nobody would hold that sentiment, so it will just be our little joke. God it is. Does it warm your heart too?

I don't think I have to tell anyone how grateful I am for this kid. I would not dare lie and tell you that there is a day that goes by that I don't wish for a do-over, that I could start over with Ben and we could see who he was supposed to be. I think a lot of parents in a position similar to ours wouldn't admit it, but I bet they all feel it sometimes. I'll admit it. I'll admit anything... I'm a terrible liar. Then they might, as I do, take a moment and see that Ben is exactly who he is supposed to be. He is special and wonderful, and I am comforted with the gratitude I feel at being entrusted with his life.

Some of the Latest

2009-01-16T15:20:00.012-05:00

Oh, my, it has been a while, hasn't it? Holidays have come and gone, a new year has begun, and a bunch of other stuff happened, too. I'll get to that. First, I want everyone to know that we had a fun, busy, well-traveled Christmas. Some of you may have seen a picture looking similar to this on a Christmas card:

...and those who have children know that this is just one of about 100 shots. What nobody outside my immediate family knows, but to which this picture gives some evidence, is that neither of my children was wearing pants. There, I said it. Merry, merry, y'all!

That is my happy boy, Ben. He's 20 months old now and still the sweetest little boy you ever met! I haven't thought of a good or easy way to say this, so I'll just get clinical. Landy, Ben, and I went to the Genetics office at UNC for genetic testing in November, thinking we would all receive testing to discover the likelihood of passing on whatever genetic anomaly has caused Ben's periventricular heterotopia to possible future children or if John and Ben could carry that gene as well. We certainly didn't go expecting a diagnosis of any sort, but let's just say that we didn't get what we came to find. After speaking at length to a genetic counselor, we were greeted by the doctor, who had reviewed all of the materials I had brought. (I have a sizable file including all of Ben's medical records, photographs, therapy histories, etc.) She sat down, gave us a smile, and said, "Ben has microcephaly. He will never be normal." I'm sure that she threw in a few other words and phrases here and there, but that's all I could hear. She and her words now live on Ben's Chances of Microcephaly Spectrum, she at one end, Ben's disagreeing pediatrician on the other, and his neurologist in the middle. He says it's just too early to make a diagnosis like that. Let me just tell you that microcephaly can be terrible. I don't want it. Since November, I have gotten up every day and worked very hard on accepting that this may very well just be, and most days I manage to enjoy my children, my friends, my husband, a book (ok, half a page of a book), a glass of wine (ok, 3 glasses of wine), or other things normal folks enjoy.

BUT. I also have THOSE days. There are days when I just can't do it. I start to feel angry and resentful, and I focus on what other people have. On those days, I hate Jon and Kate and their 8 perfect children, I hate Dora the Explorer and her big fat head, I hate some perfectly nice looking lady in a waiting room who has a 14 month old who is climbing all over the chairs and pointing at everything, saying words, and I hate feeling that way. So I chase that all out of my mind. But. let. me. tell. you. I don't know if there is a worse feeling in the world than realizing that you are jealous of your own child. Sometimes, when John tells me something I can't believe a 5 year old knows, or when he asks me to time him as he runs up and down the hallway, I have to concentrate very hard to feel proud or playful instead of wondering if Ben will ever be able to understand or do things the way his brother does. PLEASE KNOW THAT I DO NOT FEEL THIS WAY ALL OF THE TIME, so please, I don't want anyone to show up at my door with a straightjacket and take me away. Not unless you're going to take me to a place where I can sleep and get spa treatments and then bring me back after the weekend.

When I feel that low, I am forced to remind myself that although Ben might not be a normal little boy, he is a happy and healthy little boy. He has physical therapy, not chemotherapy. He has a neurologist, not a cardiologist. He has a cold that will go away, not a fragile immune system that leaves him vulnerable. I go to bed thinking about what he will be able to do someday, taking for granted that his someday is a long way off. While I sometimes fear what life will be for him, I do not fear for his life.

I love you, Ben.

I love you, John.

I love you, Landy.

I love you, friends.

Thanks for listening while I got all that out - I promise to lighten the mood next time!

Look What Ben Can Do! (illustrated by brother John)

2008-10-30T00:17:00.020-04:00

This isn't Ben...this is a picture of John at ehhh... about 4 months or so. I would not call either of my children a diehard fan of tummy time, but John was strong from a very early age. Started rolling over and very adamantly sleeping on his tummy just before he was 3 months old, scaring his What to Expect toting mama to bits. Then when I realized he could do this:

...I felt fine about it. That began the era of the much-loved sleeping with a tushy in the air. If you have ever seen a baby do this, you know what I'm talking about.

Anyway. I have been waiting for Ben to get up on his little elbows. And waiting...and waiting.......and......... waiting. Waiting and praying. Who would ever think that your wish would be for your nearly 18 month old boy would be to get into tummy time? Let me assure you that he is capable of doing this - I've seen him do it with my own eyes! He just hates it - in the same way that I hate touching feet - not gonna happen. Trying to get him into this position and keep him there long enough to get myself situated so that I can adequately distract him and get him to start playing is like trying to put pajamas on a cat. While I try to quantum leap into a position that might engage Ben, he just rolls his sweet self onto his back and smiles as if to say, "Ahhh, that's more like it. I don't like working, lady, so lay off. Now go make me a sammich." Just kidding - Ben isn't even close to eating sandwiches, and he's way too sweet to ever say such a thing...it's just the look on his face.

Well. TODAY (sound the trumpets), we got Ben onto his hands and knees, and this led to an immediate forehead plant, one of his favorite I'm-gettin'-out-of-this-while-the-gettin's-good maneuvers. Then something, well, different happened. He picked his head up a little bit. He pushed himself up onto his hands - way up - onto his HANDS! Did you hear that?! HANDS, I say! He smiled his irresistible, squooshy, sweet smile as I stuck one of those Sesame Street you-push-it/drag- it/twist-it/wiggle-it-and-it-pops-up-and-sings-to-you toys right in front of him. I was all prepared to be given the sammich look, but the most amazing thing happened. He settled in on his elbows and played with this toy! I now consider this toy the finest toy ever made by toymakers, so if you happen to know that it was made in China, just don't even tell me. When he grew tired, rather than roll over, he just nestled his little cheek (ok, his big, chubba wubba cheek) on the rug and listened to Laurie (our DT) sing Twinkle Twinkle. And when the song was over, he propped himself back up and played some more - I didn't even have to adjust him! I just watched. Really. Just watched my little boy play. That is a big deal to a mom whose every single tiny decision was mostly inconsequential the first go-round but this time is fraught with implication--- Am I using the right spoon? The one with the ridges on the bottom so it will help combat his oral defensiveness or the one that vibrates so that it will reduce his sensitivity? If I leave his helmet off for his nap, will that flat spot come back? Has he been sitting in that high chair too long? Have I done enough stretching today? Did he stand in his stander enough times this week? Did I slip him enough fish oil/olive oil today? What kind of difference will that make for his brain development? Will it make his brain grow and thereby his itty bitty head? That doesn't even skim the surface, really... This afternoon, for just a little while, I got to be just Ben's mom instead of his mom/full-time therapist. Oh, it was such a treat. A short treat, a long-time coming treat......the sweetest treat of all.

Super Sweet Things

2008-10-20T15:34:00.013-04:00

John and his friends (this one is Gabe) loooooovvvve to dress up, so I keep all of John's old Halloween costumes (and a few random dress up things like pirate hats and a "knight in shimy armour" - he doesn't say that anymore) in his closet. He and Gabe do well because they can both fit into all of the costumes, although who gets to be Spiderman is a frequent source of temporary contention. On this day, I convinced John that it really is nice to let your friends choose first, thus Gabe became Spider-Gabe. When Gabe wears this costume, he makes his hands into little web-slingers and jumps around yelling, "Web at-cha! Web at-cha!" I love it... Anyway, I don't know what they were saying to me here...probably telling me I wasn't allowed to use flash photography at the Hall of Justice and had to leave.

Last week, Ben's super-encouraging, awesome developmental therapist, Miss Laurie, thought he might like to try painting, but since he was already holding John's new markers when she arrived, we tried that first. He is "standing" in his stander, a hulking but somehow cute piece of equipment we just received a couple of weeks ago. It forces him to stand and bear weight all the way down into his feet and ankles, and it is already making a difference in how much weight he can bear on his legs without its assistance. My point here is supposed to be... Look how much fun he had with those markers! He was pretty fascinated with his artistic abilities! We decided to sign and date it for him, proclaiming it his first work of art!

Last night, I was just getting ready to read John one more book when Landy brought Ben in to say goodnight. It just seemed like one of those nights when Ben might like to cuddle in his big brother's bed, so we made a little room and they had some brother time. Soon it became clear that nobody wanted to hear Over in the Meadow, as John must have been telling Ben a bedtime story about Spiderman and the Transformers. I wonder if John will start telling Ben stories about Lightning Bolt, the dinosaur who would come to our house and play soccer and spend the night and always have a snack of safe rice krispie treats and soy milk (sad, I know). I had to make up more stories about that dinosaur! Well, I'll gladly step aside for either of them if they want to hang out together, because this....

...this is what I've always dreamed about John and Ben being for each other.

And have you ever seen a child so happy about getting his nails clipped 30 minutes past his bedtime???

oh, and here's that picture...

2008-10-16T16:06:00.013-04:00

...of Ben with a dollop of strawberries and bananas on his noggin. When something goes wrong, I say grab your camera!

And the crowd gathers to witness the spectacle...

Later, Ben and John at home, with the food plastering down the hair on Ben's left side. His hair is so weightless that I couldn't just lift out the food, instead I had to use it as a leave-in conditioner. John looks like a junior vampire since he had just finished his shot-enduring cherry sorbet reward. If ever they both smiled in the general direction of my camera at the exact same time, I'm sure it would explode. So, here you go...

We Have a LOT of Good Days! Here's One Now...

2008-10-15T22:24:00.007-04:00

The Townsends' Day at Hillridge Farm

You may not realize that we live in Wake Forest. NO, this is not where Wake Forest University is located - that's Winston-Salem. While Wake Forest is part of Wake County, just as Raleigh is, it isn't actually part of Raleigh. The town of WF might be called "quaint" by those living in Raleigh, or it might be called something else (not so nice?) by someone who hasn't been here in a while, particularly someone ITB (that's Inside the Beltline for you non-Raleigh folks). We who live in WF would consider the town of Youngsville, which lies just north of us, to be quaint as compared to our booming metropolis. And in Youngsville, the crown jewel is a place called Hillridge Farms. For those of you in Louisville, it's like Huber's on a small scale and without the restaurant. We took our 2nd annual family trip to Hillridge last weekend and fun was had by all!

Our friend Mark was there with his family and took this photo for us just as the boys were heading up the hill to ride the giant slide. Landy made me stay with the stroller and my bag. Actually, I remembered from last year the sore tailbone I had from the slide so I decided to take one for the team and sit this one out.

Joy!!!

John has his own train there! We're kind of a big deal here in NC.

Just watching my brother in the maze!

My pumpkins picked their pumpkins...

No, I'm sorry... We can't stay all day long!

We saw the giant catfish in the lake, rode the train, went on a hayride, picked pumpkins, navigated a maze, checked out a fort, and dried some tears when it was time to go! What a wonderful fall day with all of my boys... I'm so grateful!

Oh, and Hillridge Farms... get ready. We're bringing our kids and our nephews back with us in a couple of weeks!!!

Circling Holland

2008-10-12T22:49:00.011-04:00

My super-sweet friend Leah shared this really beautiful anecdote on her blog, and I can't stop thinking about it. I know she has other people in her life to whom this can apply, but I couldn't help feeling as if she was sending me a little cyber-hug. I wanted to share it with you all...

Welcome to Holland

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!? What do you mean, Holland?" you say. "I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. You've landed in Holland, and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland."

There. That's it. I don't know who said these words, but I'd like to thank that person. Truly, it describes so well the ebb and flow of happiness that you find in your days. I feel as if my plane has been circling Holland for the last year and a half, as I suppose it might continue to do for quite a while. All this time, I now realize, I have been mourning - because when you are given this journey, you do have to mourn a loss...the loss of a "perfect" child and the dreams you imagined in the way that you imagined them. You must begin all over again, trying to navigate a path you don't want to follow and can't understand. Oh goodness, there are certainly those who have been in Holland for a much longer time and with a far more dangerous and frightening and heartwrenching road to travel. They are far stronger than I am! I am thankful for the years I spent in Italy, and I am here and now choosing to find the good, the positive, the wonderful about Holland.

I'm not saying that I'll never feel cheated or ridiculously sad or inexplicably snippy to my husband, particularly if our plane has to land before changing course. I know I will. Just yesterday I cried in aisle 6 at the grocery when some impossibly adorable little girl who must have been 18 months old kept looking back at me to smile, to get a reaction from me. I'm sure it's not what she was seeking...I hope she wasn't confused. You see, she was also walking, reaching for things, running, almost skipping, and breaking my heart. I kept trying to change course, to find a place she wasn't, but it was no use. I ran into her everywhere from the salad dressing to the frozen waffles. When I returned home, Ben was playing and laughing and doing things in his own "Ben time" and the anxiety I felt earlier melted away. Now I think maybe it was God's way of showing me that there are always going to be "little trips to Italy" that belong to other people. I can't avoid them. I shouldn't avoid them. And perhaps I should also explain to them how wonderful Holland can be, all the while showing myself the same.

Anyway, thank you for sharing that really lovely story with me, Leah. I consider you one of those friends God put in my life to be just like a little treasure I discovered!

OH! I've Been Tagged!

2008-10-09T17:12:00.016-04:00

How fun to be tagged by Ellen! Here are some odd things about me....

1. I have to sleep on the side of the bed that is closest to the door. I suppose I should say it's because I'll be able to get to my kids more quickly if they cry out in the night, or that I'll be closest to them if they wander in during the night, but it's really because if there's a fire, I'm going to get up and run out of the house, and I want to be first. I've always, always, always done this. If - sorry, when we move, if our bed is on another wall, I don't pay a bit of attention to "my side" of the bed, I just take the one nearest the door. Lately, Landy has claimed *my* side because he thinks it's better for his back. I really, really do want to be a good wife and act as if this doesn't bother me...but...I just ain't right.

2. I am an only child, and while there are certain very nice things about that status, they never stopped me from wishing for a brother or sister. And I don't just mean the one I imagined living in my closet who would tell me if my outfit looked alright. When I married Landy, I finally got that sister. Love you, Laurie...

3. I don't like feet. Except my own feet, or my kids' feet...they're fine.

4. I used to love Duran Duran so much that I made my mom go to their concert at Roberts Stadium in 1984 just to get a long sleeve t-shirt for me. Mind you, I don't think she actually attended the concert (unless she was a closet fan), she just went for the t-shirt. I secretly wore it to school under my dress code approved frilly shirt with my little skirt and tights, then once at school left my frilly shirt in my locker. That lasted approximately 30 minutes, when I changed back into the frilly shirt under threat of having my mother called, when she would no doubt have had to explain that she drove across the river just to get me that shirt. Oh........... Yeah, I still love me some DD!

5. I like to wrap my Christmas gifts in solid red paper with black and white gingham ribbon. For different packages, the ribbon can be different widths or check sizes, but the paper must be the same. Every year. I don't know - it's just my thing.

6. When I was in the 4th grade, 4 people in my whole school (K-12) won the Presidential Physical Fitness Award - 3 boys and 1 girl. That girl was yours truly. I had to get up at an assembly in front of the whole school to get my pin and certificate. My feelings alternated between mortification at being recognized in front of everyone and wonderment, because I recall that I actually thought that Ronald Reagan himself was going to walk through the gym doors and present the award to me. Anyway, that proves that at one time I could do at least 10 chin-ups and run forever and ever. What the heck happened to me?

7. Once Gran and Pop (Landy's grandparents) thoughtfully gifted us with tickets to a play at Actors' Theatre. We were excited to go and decided to dine at Club Grotto before heading downtown. Naturally, we each ordered the super-awesome filet, which at that time was served with asparagus, whipped potatoes, corn pudding, AND a mushroom strudel. Of course we also ordered a molten chocolate lava cake (which was not nearly so easy to come by as it is these days). Its preparation was so precise and delicate that it had to be ordered at the same time as the entree. When our cake arrived, we were waaaay too full to eat it, but could not bear to pass on the chocolaty goodness, either. What a dilemma!!! We ate the cake, then I found I needed to unbutton my pants. We decided that we were too uncomfortably full to go anywhere but home, and we did not attend the play. Didn't even try to head in that direction. We told Gran and Pop that the show was wonderful.

I am tagging: Jennifer, Rhonda, Leah, Caroline, Susan, and Julie.

What I Loved About Today....

2008-10-07T16:16:00.009-04:00

This picture was not taken today, but John was this tired after all we did.....

Well, I loved a lot of things, but I didn't expect today to be easy. Landy has been in Orlando since Saturday and I've been on caffeinated-auto-pilot ever since, especially since he has been gone every week for the last month. Shoooo...we're glad that's almost over! Anyway...today was John's 5 year old check up. Aside from the heart palpitations I get from realizing that he has turned fiiiivvvvve, I knew this would be a doozy, because that kid hates shots. I once tried to encourage him to try writing his friend's name on a card by telling him to "give it a shot" which exploded into a 10 minute crying meltdown because "I don't want to get a shot!" Oh, and did I mention that we had to go at 2:00. No nap for you today, B.

Leaving home, one of those things happened that makes you think, "Oh, I hope I always remember this moment!" As we were nearing the stop sign to turn off of our street (next to the corner on which stands a model home all decked out with flagpoles bearing the U.S. flag and the NC flag), John yelled, "Stop the car!!!" Startled, I stopped short and turned around to him, ready to convince him that the shots wouldn't be that bad, when he said, "I have to say the Pledge of Leadance!" So we sat there, and he said it, every word, even "leadance". I had to put my hand over my heart for so many reasons!

His check up was just fine. There was the eye test, the measuring (still haven't broken 40 lbs., but almost!), the answering of questions, the finger-stick followed by what seemed to be the draining of all his blood. He was so, so brave...so into being 5 and not crying! Of course, we have no concerns about John and I proceeded to make the entire appointment about Ben. That's what you get for being so healthy, John. Just lie low...maybe you won't get the shots after all..... No such luck! 4 shots to the legs, for which there was a bit of crying, but no limb-pinning necessary. Afterward we stopped for cherry sorbet (as not a milk protein shall pass those lips)!

And then it was off to baseball, which only would have been better if Landy had been there, or oh, I don't know, maybe their coach?! Seriously, that dude hasn't been to 5 out of 6 practices. I am hereby re-naming Mr. Kurt as Mr. Coach. Ben and I watched and talked with Ivy and Gabe (and Gabe's girlfriends) and had a fun time, especially when Ben decided to knock the contents of his spoon out onto his sweet little head! And what did I do - clean it off? No! I took a picture (to be posted later...) because that's the kind of mom I am! But John did so great - Daddy would have been proud! There was no wrestling in the outfield while waiting his turn, he choked up on the bat just like Landy taught him, he even hit a line drive down the third base line and made it a double! Of course, he must have been a bit preoccupied as he waited at second, because he tried to catch the next hit rather than run to third...but we'll get this figured out! He's only five, right?

I'm Gonna Plaster a Smile on My Face Because That's What I Do

2008-09-30T14:23:00.013-04:00

Today I met with Ben's neurologist. Ben and I went alone because Landy was in Madison, WI and headed for DC, although he certainly wanted to and tried very much to be here with us. I just didn't want to wait any longer than we had to, although in hindsight perhaps I should have. I just can't say enough good things about moral support or husbands.

Technically, Ben does not have cerebral palsy since what he has is not a traumatic brain injury. Of course we got that report earlier in the summer and threw a party in our minds because that was what we worried about him enduring. BUT. I can now confirm that I took my head and planted it firmly in the sand. Ben DOES have a condition called periventricular heterotopia. This means that during first trimester brain development, some of the neurons that should have migrated to the outer part of the brain remained in the ventricular region and formed small masses in that area instead. The cause isn't really identifiable other than it is genetic. From what I can tell, it is likely a gene inherited from me but for which I show no signs.

What this diagnosis means for Ben we can't be sure, but Dr. Rathke is very optimistic. Good. I need people like that to talk me off the ledge. He talks about how remarkable the brain is at rewiring itself. We aren't changing anything about Ben's treatment, and we aren't putting any limits on what he will be able to do. For him to learn to do things like walk and talk, it might take longer that what one thinks long should be. Seriously, it already is... what mom doesn't want to see her baby get up and walk to his big brother? Our doctor stressed that we should not change our assumption that it will happen. Reading and writing might always be difficult for Ben, although we have every reason to hope he will be just as smart as his brother (who is frankly smarter than I am). He might always be clumsy. He might not be. With me as his mother, I'm not going to hold out any false hope on that one. Sorry, Ben. We just don't know. What we do know is that as he grows older, we have to be vigilant in looking for signs of seizure. Ben has had testing that confirms he has not had any prior seizure activity, but this is something that can become prevalent for those with P.H. as time passes. The only other thing I know is that although this is a condition which doesn't get any worse and doesn't necessarily mean Ben won't lead a completely normal life, I find myself reeling because I. can't. fix. it.

So. So. so. so...... I am just going to plaster a smile on my face, partly because I DO have so much for which to be grateful and happy, and partly because I think a smile can help you get started on a difficult journey by carrying you to the place you need to be. Mostly I'll do it because I think Ben is aware enough to sense my attitude and that it has an enormous effect on his progress and willingness to try to do new things, and MOST of all because it will also put a smile on his sweet face.

Oh, Mom You're Just Jealous....

2008-09-18T23:19:00.005-04:00

So I wasn't quite ready for this. He's only 5 years old, and has heretofore led a strictly pre-school kind of life. Now he's branching out, hanging out with the older kids on the street. I minimally prepared myself that he might pick up something or another that was a little ahead of his time...but not until he started using the lingo did I realize that the time has come!

Now, everything that he thinks is just great has become "so beastie" - and yes, I'm going with the Beastie Boys spelling because beasty just doesn't seem right. And neither does a five year old who proclaims Pokemon cards to be "so, so, so, so beastie."

Nothing prepared me for this scene: John and his friend came into the kitchen one afternoon to eat fruit chillers. While getting the spoons, for no apparent reason, my little just-turned-five- year-old boy exclaimed, "This sucks!"

Cut to me, dropping box of pasta I was about to put away, spinning on my heel..."What did you just say?!"

Repeat.

"Where did you hear that?"

"Just outside when I was playing."

"Well, we don't say that. Those aren't nice words."

"Oh, OK, I didn't know that. What about rocks? Can I say this rocks?"

"Yes."

"This rocks!"

As long as he's not saying that I suck, and occasionally maybe I'm even so, so, so beastie, I guess we're a little ahead of the game. Here's hoping we have some time left at the top of the hill before we start going down that slippery slope!

SuperBen

2008-09-17T22:48:00.013-04:00

This is Brand-New Ben. Perfect as could be. Big as an ox, just like his brother. I'm like a convection oven - I can take a big bird and cook it fast. It was love at first sight all over again. The only difference in me was my attitude that this was just all gonna be a piece of cake. My master plan was to fold Ben into our family like we were a recipe. He could just come along for the ride, and all would be just fine. I'd seen it all before, and I'm a roll with the punches kind of girl. Truly, I am, but please...stop punching for a while. I know and believe that if you want to make God laugh, then you should make some plans. Sometimes, though (just like everyone else), I would like to know why God thinks I am so funny.

I hate this next picture. It hurts me to look at it. I only wanted to show how far Ben has come, how truly misshapen his head had become by Halloween, when he was almost 5 months old, right before we got the helmet.

Enough of that. Here we are, same night. I honestly hate both of these pictures, because that is the fakest smile I have ever had on my face. It is just a mask for all the worry and fear. I was trying to silently will him to hold his head up, hold his trunk straight, smile at someone, just act like a five month old baby.

This one reminds me that no matter what challenges Ben has faced/may continue to face, we love him, and that really is the one thing that matters above all else. I love tender father/son moments.

We don't have a ton of photos of Ben from his first year, to be honest. Now, I know that is just bound to be the case for the second-born child, but I'm just going to admit something right now. The reason is selfish and complex. I just found it too difficult to document such a trying time in pictures. I feel like I want to plow through this time and just forget about it. Yeah, I know I'm going to regret it...already do.

At this point, maybe about 10 months or so, this was about as much expression as we could get out of Ben, at least for a picture. We could do slightly better off-camera.

Here's sweet Ben and his apparently inconvenienced big brother, John. Wearing the helmet. It's a cute little thing. Well, actually, it's an orthotic miracle worker. I just love this picture.

And this one, too....

Here we are just a couple of weeks ago. Ben only has to wear his helmet at night now. He can sit and play for the longest time. I've been feeling so...happy/relieved/blessed/excited/grateful/normal/not stuck-in-time/elated about how he has been progressing. True, Ben is still significantly behind where he should be developmentally. I know that. But we got some answers (not THE answer, just some answers) and he has just been chugging along. Even though I sometimes have to pull myself together in order to be with friends or just people at the store who have babies around Ben's age or even younger and can crawl, stand, or walk, I hold onto the progress that he has made and continues to make.

Do you ever just feel as if you have been standing on a perfectly nice rug and then someone pulls it out from under you? And it breaks all of your teeth? This morning, after PT, I sent Ben's therapist, Jen, an email about something unrelated to his treatment, and she responded with a thanks. Oh, and...by the way............

I think that you should get Ben's MRI results and have the neurologist look at them, then meet with him for a follow up visit. Ben's making great progress, but he's still so significantly delayed and there has to be a reason.

And there it is...the giant black hole I had turned my back on not so long ago - there has to be a reason. I thought we were done with the neurologist. I thought we had come up with a reason - the slowly developing vision. I might just have been sticking my head in the sand (I tend to do that), but I was frankly all in with that one...sounds good to me. And I know that it still could be the reason and that Jen is extraordinarily thorough and that maybe nobody can even explain to me why any of this has happened to Ben. It's just that I was ready to put it all behind us and get going. Planning things, I suppose.

Please pray for my SuperBen (and the rest of us). We'll get to the bottom of this - hopefully, we've already been there.

Five?!

2008-09-13T01:03:00.015-04:00

A question every mother of a five year old asks: How did those five years fly by so quickly? I'm feeling a bit wistful this week as I watch my first born baby lose any trace of baby-ness. He's all boy now...balls to the walls, all day long!

This was not so long ago, just hours before John's debut, and yes, it is as uncomfortable as it looks, but that's no fake smile! I would also like to point out that I am 5'3" with my shoes on and that's a huge baby in there, so what did you expect?

And then, our first snuggle. Oh hush, that's what a 10 lb. 7 oz. newborn looks like.

It wasn't long before he was stealing hearts with his big eyes and his funny faces. It's still the same today, only now the faces are intentional. This was just a lucky camera click.

And then, cute as a button on his first birthday. How was that possibly four years ago?

And a few months later, after his spray tan. Just kidding, of course...he loved his beta carotene.

Right before turning two, just after coming in from our post-lunch, pre-nap daily walk around the block. We spent a good half hour every day pointing out every spray painted dot on the sidewalk and frog hunting, and right now I am remembering all of those times that I picked him up and carried him past the last few houses because nap time just couldn't wait any longer. Recently, he's been asking me to carry him up the stairs at bedtime, and I do it just because soon he won't ask and I wouldn't be able to even if he did. His feet dangle somewhere around my knees, his arms usually hang down around his sides instead of squeezing my neck, but he does still rest his head on my shoulder. Sigh....

Looking like a little boy, into cars and baseball and bugs, soccer and running and dirt, but absolutely not princesses, because "princesses are for giiiiirlies"

And earlier this week, the last day he would ever be four...

I miss the baby-ness (even though we have Ben - you know, it's just different the first time you get to experience all of those things)...the baby smell, the sweet baby sleeping noises, the first-everything, but I also work really hard at being grateful for each day with him, at making sure he has at least a moment to remember as special each day. For all the time and attention I must give to his brother, he has never once shown jealousy or resentment toward Ben. I think that alone makes me a pretty lucky mom. I am happy to have so many sweet memories of when it was just the two of us (I'm talking about during the day, while Landy was at work, not as if he wasn't part of it, too!). My special, sweet, five year old John...... ( oh jeez - is that an adam's apple?)

Happy Birthday up there!

2008-09-01T16:21:00.019-04:00

Today is September 1st, which is a date that always sneaks up and catches me by surprise. Not only does it remind me that summer is dwindling away, but it marks the birthday of the sweetest lady I ever knew. My grandmother, Terry Sheckels, or as she was known to me, Gheena Terry, was born Tereza Katarina Benzinger on this date in 1920 at Kerney, Yugoslavia. She has been gone for over eight years, which is usually hard for me to believe, since I can happily still hear her voice ringing in my head. Here are just a small number of things I love/remember about my sweet grandmother.

1. She always called me "ats" (thank you carrie for still doing that...i'm sure you didn't even know that i think of her every time you do) or "babe"

2. She interspersed her speech with bits of German, which I grew up believing was just the way that everybody spoke.

3. She saved her "cigarette money" for me. Even years after she stopped smoking, she wouldn't let me leave until she had reached her hand into some odd place in the house (inside a bowl in her china cabinet, behind the tv, folded and stuck under the phone mounted on the wall...) and given me however much money she would have spent had she never quit.

4. She helped instill a love of reading in me. If my mom gave me a million books, my grandmother read them all to me, many times over. Now, with kids of my own, I know that sometimes you just don't feel like reading a certain book again, but thanks to her, I do it anyway, because I know how secure it made me feel and how much I just luuuuuved it.

5. Picking me up at the bus stop, going for ice cream at Baskin Robbins, not laughing at me when we went to Wendy's for a change and I insisted that I wanted chili because I thought it was just a different sort of Frosty...

6. Every time I stayed over at her house, she'd feed me bread and butter and Spaghettios with meatballs and Tang for supper, with one of those straws that bended into a dozen loops. It's not that I find that appetizing - not now, anyway - it was her willingness to feed me whatever gross combination of food would make me happy. I'm sure she found it repulsive, particularly since she couldn't fathom eating any bread other than rye, because that's how they did it in the old country.

7. Even though I'd cry and scream if she tried to hold me until around the time I turned two, and even though that surely broke her heart since I was her only grandchild, she never gave up on me.

8. I could hop a couple of fences while going over just a couple of roads and be at her house, unannounced, and whatever she was doing, she stopped and made me feel like she'd been expecting me all day.

9. Oatmeal cookies made with love....

10. The phone messages she would leave for me: "Hi babe, I'm just calling to see how your trip was going. I'm feeling pretty good today. You know how I like it when the sun is shining. I think I'll make some pork chops for supper. Well, gotta go. Love, Gheena." Or, "ATS, what are you doing out in this weather? I just wanted to say happy birthday...."

11. Oh, she was so proud to walk down the aisle at our wedding without that cane! All of her friends were there, and I think it was the most fun she had in ages (as she would have said). Seven months later, she was gone. Stupid cancer.

12. Right? Right. (She always answered for me when I was a bratty teen and too cool to speak, and even after that melted away, it just stuck and somehow became sweet.)

I could go on and on... I just wish I could add that she was able to see her great-grandsons in person!

Alles gute zum Geburtstag, Gheena, Ich vermisse dich!

Happy birthday to you, Gheena, I miss you!

Getting started...

2008-08-30T23:15:00.005-04:00

So I heard that everyone had one of these things, and I wasn't really sure that I wanted to have one as well, although I enjoyed reading others' updates and stories. I didn't seriously consider it until Carrie told me that it is a great place to just say, "Bleeeaaaah..." Yes, that's her word. Well, I think maybe that's just what I've been waiting for -- a place to say, "Bleeeeaaaah..." And then she and Susan told me about all the incredible people I'd find here, and I'm just beginning, but I'm just gonna say right now, that if I neglect my children or forget to pay the water bill, I blame them!

We just returned home (did I just say that?) to Raleigh from our beloved Kentucky after a week long visit all over the state. We saw our nephew, Drew, off to college and spent time with old friends (but unfortunately, not all of them) in Louisville, saw my dad for the first time in a year in Lexington, celebrated John's birthday with his grandparents, aunt, and cousins in Owensboro, and had some happy, happy reunions while staying with mom in Henderson.

Two highlights are really ringing in my head right now. First, seeing old friends. Landy and I had the chance to visit with Carrie at her house, which I have unbelievably only ever seen from the outside. That alone would have been great enough! But lucky us, Ellie and Susan and her pink bike were also there! I felt like a kid again, but a kid who was enjoying some super-fancy wine (thanks, c) with three of her favorite girls in the world! I didn't sleep right for nights after that! Thank you, all of you girls, for sharing that much-needed evening with me, and I mean to do that again soon. Also, the next day, I met sweet baby Wynn, my bff Noelle's new (and I mean 2 weeks...girl, what are you doing out of bed?) baby boy, and saw her 2 beautiful girls, who have grown so much! North, south, east, west, wherever you go, old friends are best!

The second is the time that we were able to spend with Laurie and our sweet nephews, the twin tornadoes, Jack and Luke! This is difficult for me to say, because I don't think I will do it properly, and I've really never said any of this out loud. Laurie, if you read this, please please please read to the end and don't be upset at me for how this starts... The truth is that for the last year, I haven't enjoyed...no, haven't been able to enjoy our visits with Jack and Luke very much. The reasons for this have nothing to do with those sweet boys, and I love them like I love my own children. I have big dreams of them growing up with John and Ben, but until recently, I didn't know if those dreams would ever be possible, at least for Ben. For those who don't know, Ben is nearly 16 months old now, and he is significantly delayed across the board. He had torticollis (sort of like a neck injury, in his case, before birth) that resulted in plagiocephaly (a flat spot on his head). His was so severe that the right side of his face was noticeably forward of the left, his ears were visibly uneven, and his eyes were misaligned as well. When he was 6 months old, he got his helmet,which has since fixed every weird deformity his head would have had...cosmetic, mmhmmm. At the same time, when, by the way, we were still just settling into our new house after moving to NC again, he started physical therapy twice a week. I naively thought that we'd go for a few weeks and get everything hammered out....not so fast, Allie! Until he was about 7 months old, he rarely smiled, never laughed, and still couldn't even roll over. And he also wouldn't eat any baby food. About that time, he began doing all these things, although it was still difficult to get a laugh, and I (again, naively) thought that we were off! For the next 5 months or so, nothing. Not one new thing, not really. I strained and searched for any little change in his behavior or his abilities. This was the most difficult period for me, for sure. Landy was worried, too, I know, but his job is 30 minutes away in an office with other people and the subject matter has nothing to do with the health and well being and what the hell's wrong with our baby?! For me, it was day in and day out fear and hoping against hope, crying and praying that Ben would just be okay, just please be okay. At the same time, I needed to take good care of my sweet John, all the while dragging him to endless appointments for Ben, sometimes up to 6 or 7 in one week (but usually just 3 or maybe 4). Orthotics, neurologist, opthamologist, pt, peds. CT scan, vision tests, measuring his sweet little head, developmental evaluations. Our absolutely wonderful pt, Jen, who has been one of Ben's strongest advocates, laid it out and told me that since Ben was turning a year old and still could not sit unassisted, she thought we should put him in Early Intervention (like First Steps for those of you in KY). We also decided to have an MRI, because I just had to know, even though I didn't think I really wanted to know. I felt certain he had some form of cerebral palsy, because it would explain so much of what he couldn't do. I couldn't blame all of the delays on the torticollis anymore, even though I certainly tried.

After a botched MRI when Ben stopped breathing due to oversedation, we had an agonizing 2 week wait to retry. After that, an even more agonizing 3 day wait to receive and discuss the results with our pediatrician/developmental expert (seriously, I should have listened to him all along and not worried quite so much). On Fridays, he works in Clayton, a 45 minute drive from our house. This is not a fancy place... on the way there, I saw a burned out strip club with a marquis announcing that they needed information on the fire. Didn't care. Had to go. Couldn't wait another second. He must have thought we were crazy for the aforementioned not listening to him, because he informed us that Ben's results were normal. When he said that word, the world stopped for just a second, and then I think I breathed for the first time in nearly a year. The consensus right now is that for an unknown reason, Ben's vision developed very slowly, and now the rest of him is beginning to catch up.

This has been a good summer for Ben! First the great news, which shivered all my sweet neighbors who worried for us, too. He is also in EI, has 3 fantastic therapists who all kindly come to our house and also serve as my mental health therapists! He has made great strides...sloooow, but steady. Ben can now sit up unassisted and play while doing so, he can play while on his tummy, but still hates it so he does it with a grudge, he can stand with a great deal of assistance, he can clap and smile and say dada, dog, Ed (his name for our dog, Spuddy), and mama! And you know, sometimes I think he'll never quit laughing. It's the sweetest sound I've ever heard. And it's been good for me also...I am feeling like myself again, and that's almost always a good thing!

And now, sweet Ben, I can see that you will one day soon stand up and be able to walk and then run, to chase your brother and get into trouble with your cousins. While I resent (what or whom, I have no idea) that I was unable to do so before, I am relieved that I can now enjoy all of the milestones that my sweet nephews have reached, and I can appreciate them for what they are rather than just seeing what I feared you might never do. I can see the things that you WILL do, and I feel - finally - joy at seeing you boys all together!

If you are still with me, then truly, you are my friend. Please come back...I promise not to be so longwinded! Lordy, this has been long. Bleeeeeaaaaaaah....