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

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

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

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

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

Super Sweet Things

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

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

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

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

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

oh, and here's that picture...

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

And the crowd gathers to witness the spectacle...

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

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

The Townsends' Day at Hillridge Farm

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

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

Joy!!!

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

Just watching my brother in the maze!

My pumpkins picked their pumpkins...

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

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

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

Circling Holland

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

Welcome to Holland

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

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

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

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

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

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

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

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

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

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

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

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

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

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

OH! I've Been Tagged!

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

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

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

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

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

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

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

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

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

What I Loved About Today....

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Repeat. 

"Where did you hear that?" 

"Just outside when I was playing." 

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

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

"Yes."

"This rocks!"

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

SuperBen

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

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

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

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

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

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

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

And this one, too....

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

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

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

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

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

Five?!

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

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

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

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

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

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

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

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

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

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

Happy Birthday up there!

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

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

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

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

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

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

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

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

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

9. Oatmeal cookies made with love....

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

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

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

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

Alles gute zum Geburtstag, Gheena, Ich vermisse dich!

Happy birthday to you, Gheena, I miss you!

Getting started...

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

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

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

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

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

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

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

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