Saturday, December 29, 2007

Happy holidays!

We just got back from being down at my parents' for a week, hence the hiatus in my posting. We had a great visit and the girls were amazingly good travelers (my parents live 8 hours away so it's a hike). We've had some pretty rough road trips in the past so this was a very welcome change.

I have a few cute holiday photos to share and plan to write a longer post in a few days once we get settled back into our routine. There are some shots of the note and the girls left for Santa and the one he wrote back; a picture of Hannah with Grammie, sitting up so straight and admiring a new toy, Isabelle in her braids complements of Grammie (I have to learn how to do that!), and both girls using their new art supplies.

Here's to a peaceful new year.

Sunday, December 16, 2007

Daddy of the Year

The weekend before we left for my parents' house, we spent much of our time at home getting ready for our travels. I was having a hard time with the girls because we had been cooped up due to all the snow and their various illnesses, so on this one particular day I pretty much handed them over to B and let him entertain them while I got stuff organized for our upcoming trip. As you can see from the pictures below, he did an amazing job. They helped him cook waffles for breakfast and decorate Christmas cookies, then he brought a huge packing box down from the attic and they painted it in anticipation of making it into a playhouse.

I don't know how I would survive this journey we're on without him.


This clip gives you a sense of the crux of Hannah's difficulties with movement, as well as an idea of what she is working so hard on right now: transitions.

Although she can push her wagon around really well, it's much harder for Hannah to get all of her muscle groups to work together to get her knees up under her while her arms pull her up to a kneeling position, and then eventually pull up to stand. Without being able to do this, her ability to be independently mobile is still limited. And this transition is a big one in the precursor to cruising and walking.

The great news is that she wants to do it, and is trying so hard, and trying all the time. We've been putting her in this position for a long time now, helping her get her arms up and her legs under her, and then showing her how to pull up. In the past week or so, she has been getting herself into this position on her own, which is huge. And today...

(drumroll, please)...

She got from a kneeling position to standing ALL BY HERSELF!!!

I think it's telling that she did this while I wasn't in the room. My biggest challenge is letting her fuss and complain a bit and not always rushing in to help her. It's the hardest thing I have to do. But I do it when I think she's feeling good and well fed and distracted enough by her toys and her sister that she'll tolerate the frustration long enough to work hard to figure it out alone. This is exactly what happened today.

I was in the kitchen, the girls were in the playroom, and Hannah started crabbing. I told her I'd be there in a minute, and I thought to myself: "how amazing would it be if I walked in there and she was standing up?" A few minutes later, she was still crabbing so I thought she'd gotten herself into a position she couldn't get out of, and I went in to rescue her.

I walked in, and there she was, standing up. I couldn't believe it. And she was crabbing not because she couldn't get where she wanted to, but because she and Isabelle were fighting over a toy. Both of them standing up, playing together, fighting over a toy. Who knew that could make me cry?

Saturday, December 15, 2007

Breakfast with Santa

We took the girls up to the pub and brewery in town, where the local cheerleading squad was hosting their annual pancake breakfast with Santa, complete with a three piece brass band playing all the holiday favorites. It was really fun and the girls were so excited to see the big guy, but when it came time to get up close to him, they decided they were less certain about it than they'd earlier thought.

Because they were too scared for us to put them down, we have no pictures of them with Santa, except one taken by the organizers of the event which they printed out for us. So I can't post any on our blog, except this cute one of B and the girls before we sat down to eat. (Note how excited they seem...I wish I had an "AFTER" pic to show how quickly that excitement turned to fear!) I guess that's the way it goes at this age.

The best part was that before we left, we snuck a few presents under the tree from their cousins (we aren't able to make it to B's family holiday party this weekend and won't be bringing them down with us to my parents' house next weekend). So they were thrilled to see that after they met Santa, they came home to find presents under the tree. I don't know who was more excited, me or them! They got some nice new things to play with which will help us get through the snowy cold weather, I'm sure.

Friday, December 14, 2007

Snowed in

The snow just keeps coming here. We have at least 6" on the ground, it's snowing lightly right now, and I guess more is headed our way over the weekend. Here's how we're spending our days this winter, both inside and out.

Thursday, December 13, 2007

This is our world

Yesterday a friend said something that I reacted so strongly to, it made me realize I still have a lot of raw emotions around this stuff with Hannah. I know she came from a place of good intentions but that's not how I received it. Here's what happened:

I was sharing that the girls have been sleeping horribly lately and that maybe it was because they haven't been getting a lot of fresh air and exercise because of all the cold and snow and the fact that they've been sick on and off for the past month. I then said that it would be great to be able to go down to my parents' for a few weeks where I could get some extra help and R & R. My friend, S, asked if I would consider making the long trip down to their house on my own, without B, and I said that I thought it might be easier when they're older, and when Hannah was independently mobile.

S then asked (and this is what got me), "Are there any activities or things that just Isabelle could do, like gym classes or something like that?"

I think that S probably had good intentions in mind when she asked this. Although she didn't say this, I imagine she probably offered this as a possibility to help deal with the sleep issue. I'm guessing maybe in my comments, she heard "lack of physical activity," and "hard to do because Hannah is less mobile" and thought perhaps at the very least, there was something Isabelle could take part in to help out with some of what's going on.

But what my ears heard her say is not at all what my heart reacted to. I felt myself get stiff and tense and flushed, and I said something like, "there really isn't anything that Isabelle would take part in that couldn't be adapted so Hannah could participate as well." And then, "and we're not at all there, anyway, in terms of separating them and getting them involved in different activities."

I'm sure S sensed my tension so we dropped the subject. Later that day I had more time to think about why I reacted so intensely to her comments. There are the environmental factors:
-I was operating on about 5 hours of sleep, one in a sea of many days this past month that I've had less-than optimal sleep
-Winter has come early and relentlessly to our neck of the woods and I'm feeling the affects of being cooped up, sedentary, and without much fresh air or sunlight
-I have PMS

These things made it that much easier for my buttons to get pushed by what she said. The "is Isabelle missing out on important experiences because Hannah is holding her back?" button; the "will there ever come a time when Hannah can fully participate in physical activities like her sister can?" button; and the all-encompassing, "am I doing enough at all for either of my girls?" button.

I also thought I heard in S's comment something bigger, something that gets to the core of the "mainstreaming special needs kids," debate. S is a generation older than I am, and I wonder if she, having likely been raised in an educational system that kept special needs kids out of regular classrooms, has a bias, unconscious or not, as a result of that experience.

We are new to this "differently abled" world and because the girls are so young and Hannah's limitations not that obvious to the casual passerby, we haven't yet had to deal with other people's opinions about making accomodations, adjusting curriculum so all can participate, being inclusive, etc. But this encounter with S made me realize that we will be faced with this, and have to deal with it.

I may have over-reacted and read way too much into what S was trying to say, but the point is this: I am coping well, but I am still raw, and given the right combination of things going on, I can be easily set off. And while I'm getting better at navigating play groups and story time and other casual kiddie encounters, as the girls get older it's going to get more and more challenging to navigate the maze of social, cognitive and physical opportunities and find those that are the right fit for both of our girls.

It's overwhelming. And I need to remember to take it one day at a time.

Tuesday, December 11, 2007


Here are two clips of the girls experiencing their first taste of breaded and steamed artichokes, just like my Grandma Jenny used to make them. They absolutely loved them! I couldn't believe it. I bought two, one for B and one for me, thinking maybe they'd each take one bite and that would be that. I mean, what two year olds do you know that enjoy scraping flesh off the leaves of a succulent and then eating it? I guess the fact that they're drenched in olive oil, garlic and bread crumbs helped because they wound up eating almost all of ours themselves. Next time I'll remember to buy 4. Atta girls!

Sunday, December 9, 2007

Silver bells, silver linings

So I thought in the interest of "fair and balanced reporting" I would post something about some of the unexpected gifts that have come out of my experience grappling with Hannah's delays/disabilities. I would rather not have gotten these gifts as a result of going through what we went through (couldn't there have been any easier way to become enlightened?!) but nevertheless, here they are. Some of them, I've mentioned a bit in other posts as well.

One gift I've spoken about before but which definitely merits a repeat appearance is my appreciation for the miracle of development and awe at all of the mechanisms, gears, and teeny tiny steps that make up the process by which someone learns to sit up, crawl, stand and walk. I can't say enough about how intense it is to watch this process unfold before you in slow-motion and how appreciative I have become about the smallest of gains that Hannah makes. This appreciation also extends to my fascination with all babies in the pre-walking stage. When I see one crawling and pulling up, I find myself watching closely at the way their chubby little arms grab hold of something, reach and pull up the rest of their body, including their equally if not more so chubby legs, which in turn plant firmly and squarely on the floor to give them a wide base of support. I always wonder if their parents know how amazing it is that their child can do that.

Another gift is that I, and our whole extended family, are becoming much more sensitive and in tune to people's differences, in whatever form they come. I'm not sure I would have sought out Todd Parr's book, "It's OK To Be Different" with the same fervor that I did. I doubt I would critique the girls' other books the way I do, so aware of how certain language can be inadvertently exclusive. One book they have says, "Legs are for kicking and dancing and stomping," and I immediately thought, "Well, not for everyone." (On that same book thread, I am gearing up to approach the librarian at story time and ask if she would consider selecting a book that addresses physical differences.)

It took awhile to get here, but another gift is that I truly and honestly see Hannah as Hannah: her great smile, her bright mind, her fun-loving, soft-spoken and gentle nature, her love of music and stories and dancing. This might seem like, "Well, yeah, of course. You're her mom!" But this is somewhat new for me, that her limitations are always there but not in the forefront of my mind all of the time. I went through a really hard stage where her struggles were all-consuming. Of course I still saw all of those other great things, but I was so weighed down by the fact that she was falling so far behind other kids her age in terms of movement that all of her amazing qualities were more out of my reach. It helps that she is now so verbal and expressive and social. And it makes me really appreciate how, as she gets older, her physical limitations will be such a small part of who she is. But when she was younger, her ability to communicate and interact was much less, and the focus at that age is so much more on gross motor skill attainment. Watching all of her peers move through those stages and beyond was really hard for me. Now that we're past all of that and she is such a shining star on all other fronts, it's so much easier to embrace her as a whole wonderful being.

I've also realized, through this experience, the importance of getting support from others in whatever ways I can. This blog is part of that realization; that by frankly sharing what it has been like for me to be on this journey, I'm more likely to get the support and understanding I need. I've also realized (another gift, I think), that it's okay that not everyone has the ability to offer up the kind of deep empathy and understanding that I think all people who have experienced trauma and loss are looking for. And that's okay. As long as I can get what I need from those that can give it, I can better handle encounters with those that can't.

I'm sure there are other things I'm not thinking of right now, so if they come to me, I'll add them. For now, these are my silver linings.

Tuesday, December 4, 2007

You go girl

Despite my last post about the girls being sick, teething, etc., Hannah has still been making progress with her push wagon and is really getting the hang of it now, as you can see from this clip. What's so exciting is that she's able to really get her feet flat on the floor for the most part, as opposed to walking on her toes. She's so cute about it, too. She always says, "Show Mommy" or "Show Daddy," when she starts pushing the wagon around. She's so proud of herself!

Hannah still resorts back to toe walking and dragging her left foot a bit when she's tired or not feeling great. I guess muscle tone can change all the time, depending on lots of circumstances, so sometimes, like in this video, she is really loose and fluid and other times she's really tight and not so smooth. But the important thing is that she has the capacity to be more smooth in her walking and this bodes really well, I think, for the future. We just need to keep working hard at keeping her stretched and loose and at the same time, building more and more strength.

Go, Hannah, go!

Cabin Fever

I had plans of writing another post, an upbeat one about unexpected gifts and silver linings. But the girls have been sick and it's cold and snowy out and I just feel like venting instead.

Hannah had been feeling out of sorts before Thanksgiving but seemed to be pretty well recovered by the time we hit the road for our trip down to see B's family. Isabelle was fine. But four days of staying up late, not eating well, and hanging out with their 12 cousins did them in.

Last Monday night, Isabelle woke up barking like a hound dog. We give her a few puffs from her inhaler, run the hot shower, go outside in the cold night air. It continued in the morning, along with some wheezing, so off to the pediatrician we went, where she got a steroid shot to reduce swelling in her upper airways. It worked like magic but left in its dust a toddler with major 'roid rage. I kid you not. She was flying around the house hitting everyone and everything in sight, crabby beyond belief, and totally exhauted.

Fast forward two days, and Hannah wakes up in the middle of the night with the same bark. Only she sounds worse. We do the whole routine again: shower steam, cold night air, sit with her in front of the humidifier. She was up for about 3 hours, totally miserable. The next morning we went back to the pediatrician and it was her turn to get the shot. It took longer for it to work on her, but thankfully did the trick (not without another round of 'roid rage, of course).

Both girls have had a lingering cough and bad cold since the croup started, enough that I'm constantly wiping their noses and listening for any sound that the cough is starting to get wheezy or barky again.

And on top of that, they are now both starting up with the teething again. I don't know if it's like this for all kids, or just our girls, but the process of cutting a tooth seems eternal! These are their two year molars and they started teething from them about three months ago. But we seem to go through phases, where for a week or so it's really bad, and then it subsides, and then it starts up again. And all the while, no sign of teeth breaking through.

So now we're in a bad stretch. Hannah is drooling a ton, crabby, and not very interested in doing much in the way of working on motor skills, which is a total bummer. It's so frustrating that we make such great progress on one front, and then we get hit with something like teething or croup and it's back to square one.

And Isabelle is doing what she always does when she teeths: waking up at 5am and not napping. Or maybe napping a little bit, if I lay down with her.

So we're cooped up in the house because they're sick, and because we have at least 6" of snow on the ground and it's 15 degrees out. I haven't seen the other moms I hang out with in weeks. I haven't had more than a 2 minute shower and forget about putting on makeup or blow drying my hair or putting on anything more than old sweats and slippers.

It's a sad state of affairs over here and the winter has only just begun...