Peeling Grapes

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

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

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

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

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.