Unringing the Bell

Running the Gamut

The other day RK asked for some video of our kids talking. I record the kids this fairly regularly, but I don't post them very much. Partly I take the video because when Georgia in particular (but also Rainer) talks it feels like such sweet magic (and relief) that I want to try and capture it to remember this slow-going time. I have great hopes that one day Georgia's speech will catch up and she will speak clearly and often (will I be kicking myself about that often part???) and I do think she'll get there. There was a time when I didn't know if she would walk and lo and behold she got there, so I am done doubting. At least, I am trying to stop that bad habit. And it's not really "doubt" per se, but...fear? Maybe? I don't know.

Anyhow, it's no secret that speech is probably Georgia's biggest difficulty right now. We've been having all sorts of evaluations lately preparing for her transition out of Infants & Toddlers in a couple months and she excels in gross motor (for a kid with DS. I don't mean to overstate anything, we have things to work on across the board), she does okay with fine motor (though not as well as with gross motor and definitely needs work), and speech...well, speech is the biggie I guess.

But she's getting there. She's starting to repeat words--though usually not on film of course--and she is independently using words to make requests. She has been asking for help, or in Georgia-ese "el-lip" (which Rainer has started saying now, too--just like Georgia says. SO cute!) for a while now, or her new favorite "again" (or, "aga"). She will request "g'apes" (grapes), and "cake" (which sounds pretty much just like the word, only she's referring to rice cakes). She will spontaneously say "hi" or repeat words we are using like "key" "open" "shut" "beep" "toe" "up" to name a few, and she's pretty good at animal noises. I particularly like it when she growls like a lion or blows air out like an elephant, but she does "moo" and "oo-oo-aa-aa" and "baa" among others. She can repeat a lot of letters from the alphabet and will spontaneously point to and name a lot of them. Lately when I go through saying the alphabet Georgia will announce "e" appropriately after "d" and occasionally "duba" after "v". 

In the almost three years since we started paying attention to people with Down syndrome, it's become clear that like ALL people, our kids seem to have strengths and weaknesses. We're no different obviously.

So, what's funny is I had shot this video BEFORE seeing RK's request for video of our kids talking and I figured I'd post it. If you stay through to the end you will see pretty clearly the dichotomy between her speech and gross motor! (Don't mind: the zits on my chin, the bruise on G's chin, and if you can see it, the chinple on Rainer's chin that he has had since about the time he was three days old (which, for those of you keep score, is almost a year!!!))

Turtle Dance

Georgia's brief and slightly less than enthusiastic dance routine. (Clearly she doesn't take these pageant rehearsals seriously.)

Join the Club

I will be the first to admit that when my friends (far and wide) finally start having children one by one I feel a certain sense of relief. Welcome! I want to yell. Now you will understand! It's been so lonely without you!

It's no secret that parenthood comes with its myriad trials and errors, all while working on winks for sleep and wearing your heart big and pulsing right there on your tee. It's without doubt the hardest and most rewarding thing I have ever done, I suspect that I will EVER do. Writing that is trite. I find myself WANTING to say stuff about it, but falling short in so many ways. I grab seconds to throw some words down and I find my brain barely works when I do it. So you get...this blog.

One thing I have found gives me great comfort (while also often being a source of great humor and camaraderie) is reading books and magazines about parenting. It makes sense, I have turned to books in just about every stage and for every occasion in my life. Currently, I am reading The Book of Dads: Essays on the Joys, Perils, and Humiliations of Fatherhood, edited by Ben George. Coming upon Rainer's first birthday, I have been thinking a lot about the passing of time and how quickly both Rainer and Georgia seem to be growing up. This passage from George's introduction is one of those times when I thought, Yes! That is what I meant! Thanks for saying that because I don't have the brain power to co-mingle my words in such a way to make any sense.

Here it is:

...you think you'll have forever to get to know her. It comes as a tugging pang when you remember that you won't. One outward reminder is that every time you gain command of the fatherly skills needed for a period in your child's life, she's on to the next stage, and everything you just painstakingly figured out is now mostly obsolete. Even though it happens slowly enough that I can't quite tell, every day my daughter is a little bit taller, she's a little bit smarter, and almost every step she takes now is another step away from me. Slow down, I want to tell her. What's the big hurry? Stick around a while. For once she was born, I understood on a more visceral level how it wasn't going to slow down for me, much less be stopped. If my sojourn on the planet goes as it should, there's a lot of Lucy's life I'm going to miss. I wouldn't want it the other way around--unthinkable--and yet it's still a little bit crushing to think of the years she'll have that I'll know absolutely nothing about. Because even though I realize I can't know everything about her, I want to learn whatever I can.

A Glimpse

Apparently, I am losing myself. It's evident in this blog. A place I used to come to to really explore my thoughts on things, it has turned into a sort of...report of sorts. This happened. Then that. And so and so was so many months old. And so on and so on.

In some ways, I appreciate the record, but it some ways it is just more evidence that this motherhood thing has me all jangled and jumbled. I am so aware of who reads this and as a result I am self-censoring. I don't really have much to hide, per se, but I don't want to worry anyone, or bother anyone, or make it more than it ought to be in this medium.

Winter's coming and I am kind of sad. I feel trapped lately. By our life. By feeling unable to manage the two little children outside of our home. By losing my sense of self. By guilt. Such crushing guilt some days. And obligations.

It doesn't help that the kids are sick of course, but it'd be foolish to blame it entirely on that. 

Alex is a good and decent husband and father, he puts in more than his share of work so when I say I need time away, it is not for his not helping. He does. A lot. And it's not for wanting to pawn off my children. I love the buggers. And it's not that I believe my having time away would ever relieve me from the thoughts that come with being a mother. The kids are never far from my mind.

I still, after a year and a half, feel isolated down here in the mid-Atlantic. Lucky for what we have, but lonely. Every single birthday or barbecue is a big deal.

If I were to die soon, I wouldn't want to be buried here. Alex and I talked about it recently and he agrees. We rarely get visited in life, who would visit us in death? 

Where is home? I am trying to make this home, but home still feels millions of miles away, and no where.

Let it be known that this is but a moment in time.

My Boy & My Girl

Look, I'll be honest with you. I love having a boy. I love dressing up my boy in boy clothes. For some reason, apparently, in my mind boy clothes look a lot like farmer clothes.

(The best part about that little shirt? It's a onesie. Call me crazy, but seeing his rear end in a flannel onesie had be envisioning pictures of....wait for it....John Goodman in a similar type one piece. Heee!)

Rainer is very much a boy. He is yet to turn one (though, as I have mentioned, he will be one this Saturday and obviously I am having a hard time coming to grips with the fact that my babies are growing up), but anyway, he is yet to turn one and he already, on his own volition, instinctively it seems, knows that when you have a toy car, you are supposed to push it around and go "brum brum brum".

He loves to be outdoors. I know this isn't inherently a BOY trait, but compared to his sister who would prefer to be...in front of the television, frankly (more on this below), Rainer likes to be outside. He doesn't have to be doing much of anything at all. He loves a long stroll, or just picking up rocks and sticks, and one of his favorite things in the whole world at this tender young age?

Balls.

 

"Yes, I see you have this lovely slide. Thank you for helping me go down it. But aye! What's that I spy with mine weensie eye?"

 

"Let me sign it for you. And I shall also speak. Bah! Bah! It's a bah!"

If balls were magnets, Rainer would be iron ore.

 

Must. Have. Ball.

I was trying to decide what kind of cake to make for Rainer's birthday. There were two obvious choices in our mind for things he REALLY likes. Balls and fish. EVERYthing is a fish. Strike that, everything that is not a ball is a fish. Balloons in the grocery store are fish, sticks are fish, and the mobile above Rainer's crib is decorated with fish. (Okay, that mobile really IS decorated with fish, and while I like to think Rainer really KNOWS that they're fish when he points to it, signs, and says "ish!", but I really don't know if he knows that they ARE indeed fish, because, you know, the balloons aren't. But if you ask him to go get the fish and we are on the first floor of our house he WILL go to Freddie's fish tank, and if you ask him to go get the ball, he will drop whatever he is doing and find a ball.

Anyway, the cake. Ball or fish cake? That was the dilemma. So I asked him. "Rainer, do you want your cake to be a fish, or a ball?"

The answer was definitive.

"Bah."

HOWEVER. Alex and I kind of had our hearts set on a fish cake. I don't know why. It just seemed a little more creative or something. So I argued with Alex, "But he clearly said ball!"

"Ask him again," Alex said.

"Rainer, do you want a fish or ball?"

"Bah."

"See? He knows what he wants."

But wait, I thought, and asked him again.

"Rainer, do you want BALL or fish?"

"Ish."

Ha! He'll say whichever one was the last he hears.

The fish it is.

 

One of his other favorites to say is "Dog." But we didn't ask if he wanted that this year!

And on the Georgy front, that poor girlie is still sick. And bored. SO bored. She doesnt really have the energy for much. I mean, she is not wiped out, but she still doesn't QUITE know what to do with herself. Television is a MAJOR thing for her. It's a bit of an issue, in all honesty. I mean, it wouldn't be an issue except I don't like how much she WANTS the darn t.v. all the time. I mean, when she's sick, and we're stuck home, you just can't fight the darned thing. It's hard. She's still sort of stuck in between with toys--developmentally. It's really interesting to see how Rainer approaches...things, toys, whatever, and how Georgia does. Rainer seems to attack toys like things to figure out or explore and accomplish, Georgia seems to look at them like....hmmm...like things that are colorful and hopefully (in her mind) make noise, and ultimately she wants to throw them or break them if she can't figure out anything all that exciting to do with them. Kind of.

She doesn't do a lot of imaginiative play (she will do things like brush her doll's hair if we direct her, but we can't direct her all the time). She LOVES books and looks at them often, but that only gets you so far through the day. We rotate toys and try to get her interested in activities, but other than Dance Party In the Kitchen! Well....there is a serious dirth in the activities in this house. Coloring lasts about 5 minutes (on a good day), same with all crafts, really. She'll play with blocks for awhile, but mostly, she is still so impulsive and throws things so much that it's hard to get her involved with arts, crafts, or that sort of thing. Also, she still mouths things like CRAZY CAKES.

In the very brief time that she has been at school I have grown accustomed to having a couple hours a week filled for her. A place where she can do things and be around other kids. I love her being home of course and on school days I miss her, but I am ready for her to be in school more often. Engaged and active. When she is healthy I try to bring the kids to the Y a couple times a week, but Rainer is having major seperation anxiety these days and I feel guilty leaving a screaming boy with those women. Guilty because he is unhappy, and guilty because I am clearly ruining their morning. They are decent about it, but oh how I wish he would go back to being easy-going!

Wait. I don't think I ever would have described Rainer as easy-going. So...I wish he would just be more...willing to be away from me, but apparently I am like A-plus number one numero uno most important golden lady to him, which is ni-ice, but...you get my point I think.

Anyway, that's a whole lot of words for not saying much.

Except I will add this picture of poor little Gigi. I will preface it by saying her reflux has gotten MUCH better. Eliminating her morning yogurt has done wonders in that department. She still has dairy in other forms, and will have yogurt in the evenings sometimes, but getting rid of that morning yogurt for whatever reason has helped. Over the weekend though, I think she drank too much juice at a sitting. She got up, went into the kitchen and spit up on the tile floor. Before we noticed we heard a crash and then wailing. She slipped in it and hit her chin on the floor! That poor child. The flu and then slipping in her own vomit and cracking her chin on the floor. She has a strong tolerance for pain, but she cried and cried. We didn't even know WHAT she hurt until the next day when she woke up with this.

 

I don't think she'll be going back to school again tomorrow. Her teacher called today to see how she was doing. Apparently two other kids were out all week last week as well. Her Halloween party is on Thursday. I hope we can go (I am volunteering and Rainer is going to participate in the party as well).

She really is handling the sickness better than I think she would have pre-adenoidectomy. But if this is how our winter is going to be, we're in for a long one!

Little Punkin'

Rainer and I had a date at the pumpkin patch this morning while Georgia and Alex hung out around the house waiting--waiting waiting--for Georgia's gunk to clear up. You know where's a busy place on the Sunday before Halloween when it's the first nice weekend day in weeks? Let me tell you....that patch was poppin'!

As a result I didn't get the pictures I wanted--you know, Rainer in the fields--because the crowds were atrocious. But we did at least get to look at some pumpkins and take a couple pictures.

Found one!

(We already got his bigger punky yesterday, and he was quite content with this little guy.)

 

Some pumpkins are BIG and some are little.

Since we didn't get much one-on-one pumpkin time, I made sure to take a couple pictures with Rainer and Georgia's pumpkins at home. Georgia had full on booger hair and was in a bit of a mood, so we'll get pics of the two of them with their pumpkins later in the week when we decorate them. For now, here's Rainer and the kids' punkies.

And with his favorite thing currently on the front porch, the skull.

It's SO much easier taking one kid out--I forgot about those days--but it's still a lot to juggle a child, a stroller, a camera, a pumpkin, and a snack catcher! (By the way, I love you, buy-mommy-some-time-plastic-thingy.)

I think the kids like the one on one time though, so Alex and I have decided we need to do it more often. I think Rainer and Papa Daddy will go somewhere next time and Georgia and I--assuming she is healthy--will do something with just the gals.

 

365 Days

I've been thinking a lot about a year ago lately. I guess it's because in a week from today Rainer will be one year old. It's a solid time marker and I can remember this time last year very well. The typical 9 months pregnant complaints, a warm October--our first in Maryland--and our little Georgia, soon to be ousted from her singleton status.

This is a picture from last year.

This year, sadly, all our pumpking plans have been plucked out from under us. We DID go to the farm a couple weekends ago, but we decided not to get pumpkins yet because it seemed too early and also because the kids' grammie was coming to visit in a couple weeks. It seemed like a good time to get pumpkins when she was in town. But then, that weekend got rained out, and now, the flu (or whatever it is)!

This morning we took a drive intent on getting out of the house for a little while. Alex and I are mostly just fine, as is Rainer--he just has a bit of a runny nose and a slight cough at night--but poor Georgia is fighting this the most. I had Alex drop me at a farm stand and I hopped out to pick a couple pumpkins for the kids, although it didn't nearly feel the way it should have. This is my most favorite time of year and I longed to pick pumpkins (with all the requisite pumkin pics that go along with it) long before I had children of my own. I am hoping to take Rainer out some time this week to get some pumpkin pictures with him. Although technically this is not his first pumpkin season, we don't have any pictures of him in a pumpkin patch yet.

This was Georgia's first pumpkin season up in Vermont (notice Alex's stealth hands holding her up).

A year ago today, Georgia was not yet walking. She had very few signs. She was not talking whatsoever. We didn't yet know WHO our little baby in my belly would be.

Nearly 365 days later, so much is different. So much has changed.

And I apologize for the serious decline in this post, but Georgia is in the midst of a night terror--perhaps the worst thing I can imagine for her while she is sick and I can NOT concentrate (to say the least). All we can do is wait these things out, but with her as sick as she is. It's just awful. It's perhaps one of the hardest things I have ever experienced as a parent, right up there with open heart surgery. I know that sounds crazy, but it's true. I feel so helpless when she experiences these things. And I find myself cursing....SOMEone....that she should feel this way.

Lazy (Wo)Man's Posting

We're all feeling under the weather. Enjoy a picture though, won't you?

 

You'll notice G is sporting her "keep-the-boogs-out-of-her-hair" look that was so popular in '08.And Rainer is certainly not suffering from lack of food--Belly Boy!

The Flu

Georgia either has the flu (h1n1)...

...or she doesn't.

That diagnosis and a prescription of Tamiflu is what your $20 co-pay will get you these days, but I am thankful for the Tamiflu anyhow.

Georgia got worse as the day went on yesterday. She was getting more congested and started acting a lot more upset/whiny and her fever came back--low grade. I called and talked to the pedi- about it and he said I should bring her in. It wasn't our regular pedi- because she is not there on Wednesdays, but according to this doctor Georgia is at a risk for contracting the flu BECAUSE of the DS. He is kind of old-school. I don't know if I totally buy it, but it was what made him prescribe the Tamiflu. He said he wouldn't test because even if the test came back negative it could be wrong and she could indeed actually HAVE the flu. So..no definitive answers, but I feel lucky that we have started the Tamiflu. There is some indication that her history of heart condition and RSV could cause her to have serious problems with the flu/secondary infections, so it's better to be safe than sorry.

Of course, I am growing weary already of being stuck inside the house for going on day three. Memories of last year! Georgia missed this whole week of school, too (two days). Total bummer, but what can you do other than try to make the most of it?

Edit to add: A friend of mine down in GA (who also happens to have a daughter with DS--Hi Maggie and Emlyn!) just got tested today for h1n1--same exact symptoms as G--and it was positive. Maybe this really is h1n1. I guess I thought it would come with more stomach upset...but if this is it, I am MORE THAN RELIEVED NOT to have that aspect of it going on, for sure!

What's Rocking My World Today, You Ask?

Georgia coming up to me and signing and SAYING, "cake" every time she wants a rice cake!

LOVE LOVE LOVE when she can TELL me what she wants or needs. It just always feels so magical. It is always music to my ears. My heart races and I feel giddy. I fall in love with her over and over again.