Monday, December 22, 2008

Solstice thoughts

We trudged through the deep snow up the hill to a Hanukkah party yesterday, pulling the girls in their sled. We were invited by some new friends of ours so a lot of the folks there were unfamiliar to us. It turned out to be a very welcoming and warm group and the girls were way into the dreidels, the chocolate gelt and the challah bread. These were familiar items to them since we'd done some boning up on Hanukkah with a few books from the library. They were excited to see the manorah being lit and listening to how Hanukkah came to be. As we left the party one of the other guests light some sparklers that her kid had stuck in his pocket on their way out the door. We watched them flash and sparkle and then die out, and then we walked home through the dark of the early evening, pulling the girls in the sled right in the middle of the road because it had not yet been plowed, feeling the fat flakes fall on our cheeks and lips and hearing the quiet of a snowy night.

It was in many ways the perfect way to acknowledge the solstice. I have been kind of grumpy lately about the snow we've been having as I spend most of the time trying to find ways to navigate through it with two preschoolers and Hannah's walker. In my pre-kid days, I would be buckling into my snowboard and floating down the mountain on the fresh powder, whooping with delight. Now I wonder how we'll ever incorporate snow sports into our family routin, which can feel pretty isolating as just about everyone we know does something to commune with the powdery white stuff: snowshoe, ski, backcountry ski, snowboard...

But last night I realized we can still find ways to be out in the beauty of a fresh crisp snow. It might be different than it used to be, but there is magic to be found on a quiet snowy walk. The girls felt it, too. They were giddy and giggly and pink-cheeked and happy the whole way home.

So with the passing of this solstice I'm going to try to welcome the new ways we appreciate winter in our family (even if I still curse it occasionally!:)

Sunday, December 21, 2008

Four boots are better than two?

At Hannah's last visit to the physiatrist, I asked him to also take a look at Isabelle because she is a toe-walker and has been for awhile. It's difficult to stretch out Isabelle's ankles, especially on the right side where she is almost always up on her toes. And it seems like the structure of her foot has been changing as she spends more and more time up on tiptoe. We've tried cueing her to get down on flat feet but within seconds, she pops right back up.

The physiatrist said there are a lot of kids who toe walk for no reason at all and they often stop on their own. But sometimes they don't and their muscles get tighter and shorter and they develop structural, orthopedic problems. He suggested we consider orthotics so we can correct the problem early on. I'm hoping this will have the added benefit of making Hannah's orthotics more desirable to her as well (Hannah has been in a real "no boots! no boots!" phase lately). The flip side could be that I have TWO kids who fight me to put their orthotics on rather than just one. Oh the fun we will have!!!

Friday, December 19, 2008

Chatting with Hannah

video

Winter blues

It has been doing a lot of snowing up here. Big accumulating snows just keep ripping through, one right after the other. It's beautiful and very "Currier and Ives-ish" in our quaint New England town and makes things pretty festive for the holidays. But it's getting a little old, and the first real day of winter hasn't even arrived yet. Oy.

I'm trying to get out in between flakes as much as I can and am starting to get creative. Today we scored big when we went to the field house of the college where I work and took advantage of the wide open hallways, the raised platform around the ice arena, and the indoor track. It was a great place for Hannah to practice her walking and both she and Isabelle got some of their ya-yas out. It was also the perfect attitude adjustment: the walls of our house must emit some kind of toxic whine fumes because when we're home for too long, both of my lovely ladies seem to whine, complain and crank most of the time.

It's been awhile since I've had the chance to watch Hannah walk so much at one time and I noticed she had to stop often to uncross her feet because her left foot was turning in and tripping up her right. She's always had a problem with that foot but it seemed more noticeable this time. I'm not sure if it's because she hit a growth spurt or because it's another example of how her physical limitations become more obvious as she gets older and tries to do more.

Whatever the reason, it's good timing that we just recently decided to take the plunge and get Hannah her first round of botax injections in early February. We saw her physiatrist this week and while her range of motion was good and her tone had not changed since the last visit, Hannah has plateaued in her walking and hasn't been pulling up much anymore. I brought up the dreaded "B" word because I realized that it might be time to go for it and see what it does or doesn't do for her.

I'm nervous and hopeful. It is a toxin after all. And it will be 6 injections into her muscles. And she'll probably have some soreness and muscle weakness for a little while after. But hopefully the botox will relax her muscles enough so that she doesn't have to fight them so hard to get around and can use the time to make more progress with her walker and with pulling up, two areas we're trying to focus on right now.

It will be interesting to see how it goes. I hope it helps. But then does that mean we've jumped onto the botax bandwagon and will be subjecting her to regular rounds of injections so that she can keep reaping the benefits? And what does that mean? (Again, it is a toxin after all)

It's so hard to know the right thing to do some times. I feel like I have pretty good instincts and it seems like it's time to give this a whirl. But who knows? What if I'm wrong?

Sunday, December 14, 2008

Wish I would've said...

A woman came out to appraise our house the other day (we're hoping to re-fi) and she had her 6 week old son with her. The girls were ga-ga over the little guy and Hannah was sitting at the play table craning her neck to see him, so I got her out and brought her closer for a better view.

The woman turns to me (while Hannah is in my arms and Isabelle is standing right there) and says, "What's wrong with her legs?"

OK, so first let's just acknowledge that this woman was totally clueless, ignorant and oblivious to the fact that this is not the most appropriate comment to make.

That aside...

I so wish my response to her inane question was different.

It's funny, I don't really wish I had said something nasty to her. I wasn't in that kind of mood and didn't feel like that would have been very effective. But what I do wish I had said is something along the lines of what we regularly say to Hannah and Isabelle. Something like, "Well, some people's legs are not as strong as others and so we're working on building up Hannah's strength and right now she using a walker to get around. Right, Hannah?" Something that brought Hannah into the conversation instead of talking about her like she wasn't there. Something that was inclusive, respectful and considerate.

Instead I blurted, "She has cerebral palsy. The girls were born premature."

The woman went on to tell me a story about a kid in her daughter's class with some kind of condition (she didn't know what) who was now walking but took awhile to do so. And not long after that, she left.

I wish I could rewind that conversation for so many reasons. Both of my girls have big ears and pick up on just about everything that is said. I can only assume Hannah heard me say "cerebral palsy" just as she heard that woman ask what was wrong with her legs. At what age will she start to internalize these comments as part of her sense of self. When will they start to make her question who she is and why she is different? And what will Isabelle think of all of this?

At this point, I just hope that if they did hear this, they did not internalize it or think much of it and that it didn't make a dent in the more positive ways we've been portraying Hannah's differences up until now.

I also hope to think before I speak next time and do Hannah the justice she deserves.

Thursday, December 11, 2008

Overheard

Hannah: "I like your PJs, Isabelle."
Isabelle: "Thank you, Hannah."
Hannah: "Do you like mine, Isabelle?"
Isabelle: "No, I don't."
Hannah: "Why not?"
Isabelle: "I just don't. That's why."

Friday, December 5, 2008

Brokeback mama

I am beat down. My back, knees and tailbone have seen better days. Sure, some of it is that I'm closer to 40 than 30 and also that I was a long-distance runner for many years before I had Hannah and Isabelle. But a lot of it is the physical aspect of caring for the girls, particularly Hannah.

I find myself complaining about it a lot to other people and then I feel awful because if I were Hannah, I would hate to think that my mom was suffering because of me. I do try not to talk about it in front of either of the girls. I guess that all parents suffer to some degree because of their kids, right? (Let's pause as we all reflect back on the teenage years and the torture we put our own parents through...)

In any event, my body is in pretty rough shape and depending on what we're doing during the day, sometimes I'm so uncomfortable that I get really cranky and short on patience with Hannah and dread helping her with some of the things she wants to do because I know how much pain I'll be in after. For example, she isn't able to do things like push her baby stroller without my help because it's not sturdy enough to hold her weight when she leans on it. She also loves to help me clean the kitchen but she can't push the broom on her own and walk at the same time. Both of these things are back breakers for me, because I'm trying to both help her walk and hold onto whatever the item is at the same time. I sometimes try to engage her in a different activity and then I feel badly that I'm choosing what she gets to do. And she gets frustrated by that as well.

Trips out with the girls are rough also. I'm often holding Hannah on one hip (she's about 22 lbs), her walker on the other hip (probably around 15 lbs), the diaper bag is strapped across my chest and Isabelle is trying to find some part of me to hold as well. I feel like I am perpetually hunched over with arms flailing. I know this is a position familiar to many parents: we're like domestic sherpas, schlepping kids and gear in the most anti-ergonomic ways possible. But usually those phases where you are doing the most carrying and bending and straining don't last more than a year or so. With a kiddo who has mobility difficulties, the phase can last a lot longer and sometimes it never ends.

It's so frustrating to me sometimes because if things were different and Hannah were more mobile, I would be so much more inclined to be out and about with the girls in all kinds of weather. By nature, I'm a pretty active, outdoorsey kind of person. I wouldn't hesitate to bundle them all up and take them on adventures all over the place. But because I know how much effort it will take and how many Advil I'll have to pop afterwards, I find myself being much more of a homebody or gravitating toward more sedate activities.

In a funny way, it's almost harder now that Hannah is getting more independent. Before she was using a walker, she was more content to sit in a stroller and I didn't feel bad if she wasn't out walking. But now I want to bring her walker everywhere we go, to help build her endurance and confidence.

In two weeks, I'm scheduled to go see the same physiatrist Hannah sees, so that he can assess what's going on with my various aches/pains and give me some recommendations. I'm pretty sure I know what I need (massage, adjustments, yoga/pilates classes) but realistically, I don't have the time or the disposable income to do any of those things on a regular basis.

I guess I'll have to figure something out though, because I owe it to myself and to the girls.

Thursday, December 4, 2008

Merry merry








Bring on the holiday cheer! We got back on Friday night from our Thanksgiving travels (had a great time visiting everyone and Hannah and Isabelle LOVED playing with their 12 cousins!) and we spent the weekend getting a jump on the Christmas season: we went to a tree farm and picked out our tree, decorated it and then baked and decorated Christmas cookies. It was such a fun weekend and the girls were so into it this year. When we finished everything late that afternoon, we all squeezed onto the couch and watched the lights on the tree and I said to B, "I love our family."