The Griswolds Invade San Diego

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

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

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

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!