Unringing the Bell

6 Month Review

It's a tough day for me to be looking back because today is one of those days when I think I should be seriously considering work outside the home--the kids and I could really use a break from one another, but even as I write that I think about my little man and how much he has brought to the table and I feel guilty.

We have a funny love affair that little guy and I.

I'll tell you one thing that Rainer wants almost always:

To be held.

Sometimes he'll fuss and whine and you think "Oh, maybe he wants to go play in his jungle, or his exersaucer," so you put him down for a minute and he seems content for a few, but suddenly, "Oh! Wait! You put me down! Pick me up! Pick me up! Pick me up! Pick me up!"

One might think this was really endearing. And, at times, it is. When he flashes that gummy smile at someone who is saying hello and then buries his face (at warp speed and all head-butty-like) into my collar bone like a coy little sailor, it's all you can do not melt like a popsicle in Tuscon. But, the funny thing is that, I don't really think he wants to be held because he's a snuggle bug (although he has been known to give a snug or two), more it's because, he likes the vantage point. The bugger.

Rainer has finally begun to roll. Oh, sure, he COULD roll at about 3 1/2 months. He just chose NOT to. Except here and there on a whim. In the past two or three weeks he rolls more often. Sadly, it's most often at night when he is prone to being awoken and getting all fussy and AWAKE fifty-five times in an evening because he rolled in his sleep. He'll roll from his back to his stomach and then, just cry. Why won't he roll back? He can. He just doesn't. It's almost as if he prefers for me to come in and help him. So he can say, "Look what happened to me! I was sleeping and then....LOOOK! The inhumanity!"

He's also been sitting for about three weeks or so. He's getting stronger and stronger about it and when he does topple over (because he certainly still does) he is able to sort of pill-bug his body so that it doesn't make too hard an impact upon hitting the floor. Maybe he'll be a stuntman! This is in  stark contrast to what falling over was (and sometimes still is) like for his older sister who has had her fair share of head thunks (several in the last couple days combined, although not from toppling over while sitting, rather, slipping on errant toys and biffing it).

Speaking of Rainer's sister, he is getting highly tolerant of her beatings. OK. So maybe beatings is a harsh word, but she DOES tend to (try to) pummel him. She's getting better. She doesn't bonk him every day, and they spend a good part of their days making each other laugh--genuinely making each other laugh (heart soar!), but sometimes (like...umm...this morning) she'll choose to hurt him for no known reason. This morning, without provocation, she bit his hand (again).

He is a touch cookie. He cried out. I separated the two of them and though he had (has) distinct marks on his hand from her teeth he was back to normal in seconds.

Maybe he will be a strong man. Or...just a really really patient, I dunno....vet?

This afternoon we have his six month appointment at the doctor's office. My guess is that he'll weigh somewhere around the 16lbs 9oz mark. Maybe even closer to 17lbs.

I have a lot of questions for her.

And now, I hear murmurings from my bedroom where I left him asleep (surrounded by many pillows) on my bed (because it's pretty much, like, the only place he'll sleep for longer than 5 minutes in the day). So I have to go.

This wasn't the love letter I thought it might be. I guess it reads more like a police report.

I didn't mean that. I love that little guy. Unfortunately, lately, sometimes it seems all I have time for are the facts.

I have to write his birth story. I have to jot some more things down. I have a lot to do. But now, he calls.

Hard Morning Undone

I am having a bit of a day. You know...a DAY. I won't bore you with the details, suffice it to say there were tears. From everyone.

This is making it better.

Sometimes I Worry About the Future

When I should really just be paying attention to the now.

Like, Georgia playing with the friends she has today. Today. Now. We ought to worry about tomorrow, tomorrow.

I won't lie to you. There is something about these pictures I love--seeing my daughter amongst her peers on a sweltering summer day--but something about them also brings to mind the "otherness" of my daughter. The two little girls she is playing with are fully about a year younger than hshe, and still...you can see how she is the one getting in the middle of the game they were playing (trying to stop the lawn mower) and how she is the one being "fed" the water. It's sort of a role she ends up in, the one in the middle who doesn't quite get it that the other kids are trying to play a certain way, or the one being taken care of. (Dangling participle, I know.)

I can think of far worse fates. (And I DO know that this is probably me just READING into it all. Who me???)

I am so happy that Georgia's friends include her. I mean, they are so young it would absolutely baffle me if they DIDN'T. But I suppose making sure she has friends now, that we have friendly folks around us in general, will help ensure that she is well-liked and cared for later when I am not around to help mediate " toy lawn mower discussions".



 
Today I feel this tightening in my chest. This swell of hope and urgency and agitation which Alex blames on the spring.

I think he is right to an extent. And also, I know, it's because of the many things I need and want to accomplish.

Tonight, driving home from the grocery store, the moon roof open and The Story on the radio--one of my all time favorite radio programs--something about the weather, the smell of the evening, the way it feels on my skin propels me into my future and into my past all at the same time.

I tried explaining a similar feeling to Alex on Sunday while we were driving through some local rural landscapes. I told him that there was something about the long grasses and views, the rolling plains and farm houses that left me longing...but longing for what?

I think Alex's summation was correct in that instance. He told me he thought perhaps I was longing for a time in my life when driving through those places meant possibility. Possibility for my day--when I didn't have nearly as much responsibility, and almost no one depending on me, no nap and food schedules to work around--and for my life.

So much of what I used to fantasize about, is what I now live. My husband, whom I love, my children, who baffle me with how much I adore them, our home, which while not perfect, is perfectly our own. I should feel like the luckiest girl alive. And I do. I feel lucky. I want for very little and what I want for is mostly superfluous. Mostly. But I find myself at an impasse.

As I once told Alex, they ought to write on my tombstone, "What else?"

I have what I once thought was all that I would ever need. And yet, God willing, I have at least a tad more life to live. I am trying to figure out how to fill it up, while at the same time feeling like I have little time for any more than what fills my life day to day.

And still...

...what to fantasize about next? What great dream?

Da Kids

Before it got hot

And after.

This picture of G makes me giggle because she is so bedaggled in it. Her shorts are hiked up funny, her belly and diaper are pouching out, her straps are twisted, her hair is going crazy, she's wet and sweaty and she looks a little hazy (because of the danged allergies which are KICKING. HER. ASS.) Everything other than the allergies are how it should be on a 90 degree morning after playing in water bowls with her friends.

The allergies, though, we are not happy about. The pollen is covering EVERYTHING and the Claritin is doing very little to alleviate her suffering. Poor gal is swollen-eyed, runny-nosed, and tired. I've been getting pollen headaches (as has Alex) and even Rainer has the boogs. Hopefully we'll make it through. The doctor has us on orders to stay indoors with the AC on and windows shut to help G deal with it, but when our friends invited us to play, I didn't want to deprive Georgia of some good ol' summertime fun.

I'll be happy if we have an actual spring though, truth be told. Here's hoping we aren't at plus-90 for the duration.

Ever?

I sort of biffed the end of that last post. I was rambling on and on and then I realized I just didn't even feel like blogging anymore. So I ate lunch. Quickly. Because Rainer is bound to wake up any minute. And then I remembered the feeling I had this morning when I awoke from a dream. So quickly again, I write.

In the dream Georgia (whom I often call Liz--which is my younger sister's name) was sort of meshed with the "character" of Liz when she was a little girl. Liz/Georgia was making plans with her friend Jennifer (a girl who used to live across the street from us when we were younger) for a sleep-away vacation together with Jennifer's parents. In my dream I even remembered the phone numbers of people I haven't thought of--much less called--in two decades. Anyway...really I was making the plans sort of as Liz/Georgia's mother for the vacation. I think it was to Disney World. I was very excited that Liz/Georgia was going to get to go away with her friend's family.

When I woke up I felt this crushing feeling of dread when I wondered if my child would ever be invited away with another family. If she would ever have friends like that at all. I hope, I pray, but I don't know.

And some days it sets me off. The drop of the hat and watery eyes this hot day in April.

I hope my daughter lives a fulfilling, friend-filled life.

Not Sure

I tend to kowtow to authority--it's a trait that has both served me well and hindered my advancement. Ultimately, it is not a trait I admire in myself--I think I should trust myself more and I am slowly learning; however, I do not admire it when people automatically resist authority either. Sometimes people are in those roles because they really do know what is best. Early on, I considered our therapists as authoritative. In the last 18 months, plus or minus, I've come to realize that while they may be considered professionals in their fields, they do not always know more than I do--about Down syndrome, or especially about my child.

My view of the therapies we received has had peaks and valleys. Currently, I am not convinced it is in our best interest to continue our therapies, but I worry that if we beg off Georgia will not be offered the services at a later date when perhaps they will feel more helpful. I've gone from taking the therapists' words as gospel to recognizing them as suggestions. Not always helpful ones or informed ones at that.

Right now, today, I feel like the time we spend with the therapists is a waste. At the same time, I want Georgia to be able to continue with the school she attends. I am trying to work my brain around it all so that it feels like we have these people to help guide us, while knowing that whatever they say or suggest we can take or leave.

That is how I am going to proceed for now, but I am really not sure about it. Not sure that the time we put in. The energy and the coordination and the planning is worth the effort. Often, when therapists leave, I feel worse than when they showed up. Phrases like, "I think we have hit a plateau in Georgia's language development," not only sting, but ring false because WE know that Georgia's language has taken flight (a faltering flight, but feet off the ground nonetheless).

Georgia is a little girl. Not a performer. As a result, she doesn't show off everything she can do, especially, it seems, when asked. This is nobody's fault, but it does leave me feeling like I am trying to convince people of what she can do.

I don't think her IFSP is an accurate portrayal, nor do I want to make it seem like she is so advanced in her skills because she DOES need help...

I guess, ultimately, as I ramble around here, I am wishing she had therapists who really GOT it. And really cared. I mean...REALLY cared. People with PASSION.

Maybe then. Maybe then it would all feel worth it.

Backyardigans...and admittedly a little mush

This evening while Dad grilled up some dogs, the kids and I hung out in the grass before the rain came to wash away the sun.

I like this picture because Rainer is a cutie, but also because it looks like Georgia is really soaking it up. (Really, she is probably just being a goofball.)

In the last two days (literally, TWO days), Rainer, for some reason has relaxed a little bit. I am NOT complaining. He is almost always relatively chilled out when we are out of the house or around other people (even at home), but thankfully, I have been able to let him chill out on his own for a few extra minutes here and there this week AT home, with NO visitors, without him causing a scene.

The two kids have been taking turns with this hat the last few days. I think it was a hand-me-down from my sister's kids. Georgia LOVES taking turns putting it on her head, or Rainer's head, or my head, or Daddy's head. She also likes dancing around in front of the mirror with it on.

This morning she came up to me with it and said, "hat". I am LOVING this beginning language. It is S-L-O-W and in NO WAY consistent, but in a way, as a result each word is that much more sweet. My in-laws are coming this week and I am hoping she'll feel like showing off!

I love this picture of her because she just looks SO SURE of herself. (Please don't mind the junk on our back porch, we need a shed like you wouldn't believe, and because we just had a tree removed from our yard today I think I know EXACTLY where to put it--you know, when we have all that extra time and money.) (By the way, she is wearing her Converse without the orthotics because she was only supposed to wear them for four hours today (which she did)).

I also like this picture because for some reason I think it is just SO cool when kids pop a squat like this. It's NOT an easy way to sit. Try it! She can sit like that for a long time.

How totally annoying is it that I just go on and on posting pictures of my kids? I'm sorry. They just wow me sometimes. Can you believe we MADE these little guys. I mean...you made yours and I made mine, or maybe your sister or brother or aunt or uncle made some little ones, or in the very leastm your parnets made YOU, but holy heck...having kids is wild. Magic!

Duh. Right?

I'm just really loving this time with them right now (which is saying a lot considering how much COMPLAINING I have been known to do). Maybe it's that the weather is changing...but more than that, they are both just coming into their own in these new stages in their development and it's just wild to watch and be a part of every day.

The little attitudes and their senses of humor.

It's the biggest job and the most amazing gift, this whole parenthood thing. I won't lie, Alex and I joke almost every night at about 5:30 when we say "Oh my God. It's so early!!!" Both of us knowing we're just ticking down the minutes until 7:30 when we can put the buggers to bed. But although we may joke, and although we may heave a sigh of relief when they ARE both snug in bed. In between those minutes, AFTER dinner is served and we can all relax, almost every night the four of us hang out in the living room. We read books, we sing songs, we dance and fly the kids around the room. We laugh and goof around. We snuggle (suddenly, Georgia is REALLY into snuggling--it is WONDERFUL). And we just are. Tired, spent, and exhausted sometimes (wait, are those the same thing??? hahahaha), but so in love with our kids. So very, very thankful that we get to be a part of their lives.

I swear. I don't know if I was always like this, but having kids can make you think of the most wild things. Like today when I thought, "Oh, I am so sad that I only (on average) will get to live another 50 years! I want to stick around to see my kids grow OLD!"And then I tear up, and I hug them closer.

Or maybe it's just a look they give. Or a tilt of their heads. And I well up. With such love. With such a desire to be as close to them as possible.

I can't believe that one day these kids will not be at my disposal. That one day they will say, "Not now, Ma." (And Georgia already DOES say that in her way.) But that Rainer will be a grown man with a lover of his own--when it might be inappropriate for me to nibble on his ears all morning. Or when Georgia is off running her own business, or hanging out with her friends, and I am just...a pain in the arse.

It makes you think about your own parents. What must it be like to have that distance?

Oh man....

I refuse to think about it any more tonight! :)

Sure Steps

Georgia got her new orthotics on Friday and I think she is doing pretty well with them. I wasn't happy that we had to drive clear down almost to DC to get them (once to measure her for them, and then two weeks later to pick them up--and both times we had to be there by 8am!!!), but anything for my babies, ya' know? In fact, we're supposed to go back in three weeks to have her feet checked out (to make sure all is going well) and supposedly back again every three months, but I might see if we can't just do all that with our regular LOCAL PT. Those things are expensive, too! Our out-of-pocket expense was almost $500 and that's AFTER insurance! Glad we HAVE the insurance for sure, it would have been close to $2000 without it--and don't forget, she is likely to grow out of these in approximately a year!!

This is what they look like (but actually, they are reversed in this picture--the left and right, I mean).

And this is what they look like on her.

Sadly no more hip, cool Converse with these bad boys. She needs a WIDE shoe. Luckily we found some at Payless for only $14 (with another pair of shoes for her brother at half off).

After our long morning (we woke up at about 5:45 and drove there, had the appointment, and came back in time for OT all within 3 hours), Georgia was feeling slap happy and was posing for the camera.

She gets really into the mirror. She'll talk to herself and check out her reflection while trying on hats and new clothes. She also likes to look back at herself over her shoulder and check out her backside. It's REALLY funny. When I have time I will download that video.

A History Lesson from Dad

My father sent me the following email:

Hi Trish,

The pictures from your blog would indicate Civil War (1861-65) soldiers by the uniforms they wear. Francis Scott Key wrote the National Anthem during the War of 1812 (1812-15). The fort was in existence during the Revolutionary War of 1775-83 too. A great historic site to visit for sure.

LU,

Dad

Thanks, Dad. Shows how much we were paying attention! Whoops!!!!

Oh, say! Can you see?*

Since a lot of you have asked about that Access Pass I mentioned yesterday I wanted to write quickly to say that we got it (and used it) at Ft. McHenry here in Baltimore. We had a lot to do this weekend and sadly we had to miss a get-together with some folks we REALLY want to see/meet, but when the weather was so perfect yesterday, late morning we decided to ditch a few chores and head over to the fort to check it out and get our pass (which we had been meaning to do).

We weren't sure how easy it would be to get the pass (I had heard it could take a couple weeks) and since we hve a couple trips this summer where we'd like to be able to use it we wanted to make sure we got it early, but I think the info I had must have been wrong or out-dated. We brought a letter from our pedi- saying G has DS and they didn't even end up looking at it. (Perhaps because Georgia was right there with us and obvs has DS???) I just said something like "I heard that there was a pass? For people with disabilties?" and the guy knew exactly what I was talking about. He took out a box of the passes (they look like a credit card) and copied down the number from the card into a book and had me sign the book and that was that! Easy peasy.

Now, I don't want to take advantage or anything. But, I really don't think I am. I mean, she has a disability. These were designed for people with disabilities. Why not, ya know?

We got lucky on the day we chose to go, too, because they were having their yearly Revolutionary War-era re-enactments and we got the full-on expereince--court martials and all. Tons of people acting like soldiers and soldier's wives and kids etc. It was actually pretty realistic (if you ignored all us modern-day folks). Everytime you got within earshot of the actors they would speak like/or about the era.

 Plus, the surrounding area is just a nice place with lots of grass and on the water where people can picnic or kids can run around. We had a good time. I have LOTS of pictures of the kids hanging out which I will put up soon. These are just a few from the actual re-enactment stuff.

*Francis Scott Key was an ancestor of mine. Pretty cool, eh? (Oh, hey Tam? If you are reading...did you know you share a birthday with him?)