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!