Here Comes the Sun, and Isabelle's post

Longer days, more sun, healthy kids...things are looking up in our neck of the woods. We had a really great weekend, just being out and about with the girls. It's always so fun to get out as a family and it's getting easier and easier to do, since the girls can rally for a long stretch in the morning before they start to hit the "I need a nap" meltdown button. We took advantage of this and on Saturday, took them to this great environmental center/working farm for a morning of playing and learning about animals in the winter. Sunday, we met up with my sister-in-law and her two boys for some cross-country skiing.

Skiing was amazing. In our pre-kid life, B and I spent a lot of our free time outside...hiking, biking, canoeing, skiing, snowboarding, camping...and since having the girls, we've obviously scaled way down on this and both miss it terribly. Now that they're getting older and more mobile, we're excited to start easing our way back in, only in a new and slightly (well, maybe a little more than slightly) adjusted way.

Being out with them Sunday, even if it was only for about an hour, showed us that this new way of doing the outdoor thing is really, really fun. We carried them in their backpacks which was a little hard, adjusting to the different center of gravity and added weight. Plus we're both totally out of shape. But the girls loved gliding with us on the snow (they kept calling it "skee-ting") and it felt amazing to be outside, in the fresh crisp air, doing something physical.


I think the fresh air did wonders for all of us: we're back on a regular sleeping routine again (I probably shouldn't even write that; I'm sure I'm cursing myself) and Hannah is getting stronger and stronger. She's getting up on her knees again, doing some really nice side-stepping and cruising, and last night she stood up by herself with only the small of her back leaning against the crib rails. Then today, she did it again only this time it was downstairs in front of the fridge . I'm so proud of her!



So I realized that I haven't shared much lately about Isabelle, who has a lot going on also. So I thought I'd dedicate some of this post to her.

Isabelle's vocabulary astounds us and she can now speak in pretty complex, grammatically correct sentences. Today she told her teddy, after she threw him on the ground and then picked him up again, "I'm sorry Teddy, I didn't mean to do that." This from a kid who only a year ago was just pointing at things and saying, "Baby, baby." She's also not only very big into doing everything herself, but has also started to want to help ME all the time, with dishes, laundry, cooking, getting myself dressed, you name it. This morning she wanted to help me put on my belt.

Isabelle's personality is really different from Hannah's. While they're both very expressive, Isabelle is much more of an extrovert. She's the life of the party; she's a total ham and can often be found marching around the house singing different combinations of songs that she knows


("Old MacDonald had a farm, and Daddy's gonna buy you a mockingbird") She loves words, the funnier sounding the better, and will crack herself up repeating them over and over again. "Flopped" was a word in a book we read the other night and she got a real kick out of that one as she marched around for the next five minutes yelling, "FLOPPED!" while she and Hannah both got hysterical.

Isabelle is also really good at amusing herself for long periods of time. She has great concentration and a sense of purpose or industry. Whether she's setting up her stuffed animals for a tea party or getting out her tool bench so she can work on a project with B, she will vanish into her own world for a long stretch of time without ever looking up to ask for me. This is something that in hindsight was definitely evident even as an infant. While Hannah needed to be constantly held and jiggled and bounced, Isabelle would just sit quietly in her bouncy seat staring out at the world and taking it all in. We called her the buddha baby. Of course now, if you interrupt her flow while she's in the middle of some really intense play, look out! There's definitely nothing budhha-like about her temper tantrums.

Anyway, the girls are both doing great and things are pretty sunny in the Galliringo house these days.

The upside to hard things

I posted a few days ago about taking the girls to music class and how I had a hard time with Hannah's inability to participate like the other kids were. It made me sad for me and for her, that she seemed to miss out on the full experience.

How wrong I was.

Since that day, Hannah has been talking constantly about music class, asking me to sing some of the songs and referencing the teacher. Tonight after she went to bed, I heard her talking to herself and saying, "And then, we will go to music class in a little while."

Clearly, she got as much out of the experience as Isabelle, even if she needed me to help her move and groove. I guess in the future, I better leave my expectations of what a good time entails at the door. Go Hannah.

Notable Quotables

The girls talk nonstop all day long about anything and everything under the sun. It amazes me how their grammar and syntax is evolving right along with the new words and phrases they pick up every day. It's also hysterical and sometimes slightly uncomfortable (we seem to be going through a big poopie and genital phase in our house)

Here are a few recent quotes from the girls:

Isabelle:
"That's my vagina down there."
"Hannah stop saying that!"
"Mommy, sing 'There was a farmer had a dog and Bingo was his name-o, B.I.N.G.O'."
"When I get older, I will do that."
"No listen to Mommy!"
"Sometimes Mommy and Daddy do poopies and it gets a little messy."

Hannah:
"It's just a little tiny poopy."
"Mommy's shirt is blue. Mommy's shirt is red. No, it's blue."
"We're all sitting together."
"I want to do some dancing on the floor."
"PLEASE can I have some banana?!"

Before I know it, it will be "Mom, can we borrow the car?" :)

Why some things are just really hard

This morning I took Hannah and Isabelle to music class for the second time. The instructor is very low-key and friendly, and it's a casual environment with a small group of moms and kids in a big studio space about a mile's walk from our house. I really like that we've found something so convenient that is a safe and nurturing place for me to take the girls because as I've mentioned before, it isn't easy for me to try new things with them; the logistics are always hard for any mom of more than one kid, especially when one isn't walking, and especially in the winter.

But even in this safe place, it is still really hard because with each new thing we do, it's another reminder of how difficult certain things are for Hannah that other kids can do with such ease.

Different aspects of this class are a challenge for Hannah. In general, in a new environment she is more tentative and unsure of her body and she has a harder time with things like balancing in a sitting position. She is also more prone to being startled by unexpected or fast-moving visual stimuli (like kids running around her with musical instruments in their hands). This class is also very movement-oriented, so much of the time the kids are up and dancing, banging on instruments, running around with scarves, moving in different ways to music. When it's time to get up and move, I always struggle with whether or not to hold Hannah's hands so she can move herself or hold her in my arms. I try to ask her, over the din of the music, whether she wants to dance by herself or have Mommy hold her (she's usually pretty good about expressing her preferences). I don't want to deprive her of the experience of moving around herself but she seems to enjoy when I hold her. Then there's Isabelle, who wants to hold both of my hands and dance around with me. Today I put Hannah on the floor while Isabelle and I did a jig and it felt so effortless and light and freeing. And then I looked over at Hannah and saw that she was struggling to keep herself sitting upright and I immediately felt so sad that I wanted to cry.

I fought the urge to cry several times throughout the class, as so many of the activities were impossible for her to do without my help. But Hannah didn't seem sad, just tired and content to sit.

Then when we got home and after she had a hit of some milk and crackers, she was crawling all over the floor, pulling up at the cabinets and kneeling in front of her toys, chattering up a storm.

It's so hard. At home, Hannah is a vivacious, energetic, social, fun-loving kid who can move around pretty well with some minimal help. At home, we know the parameters of her disability and we are well-versed in what she can do well and what she can't. When we go out to different kiddie activities, Hannah gets quiet, easily tired, and much more affected by her motor difficulties. She isn't clingy or anxious, just much more tentative and content to observe.

Some days I can deal with this and some days it just breaks my heart. Today, maybe because of the gray skies and cold weather and lack of sleep, today was a heartbreaker.

To Sleep, Perchance to Dream

Before becoming a parent, there were many things I didn't realize. Here are a few:

1. You almost never sleep straight through the night again.

2. When people say, "Our baby sleeps through the night," this does not mean that from this point forward, the little wonder will go to sleep at a reasonable time (say, 7:30pm) and not wake up again until an also reasonable time (say, 7am). What it really means is that aside from the occasional illness, teething, developmental changes, travel disruptions, poopy diapers, full moon and bad hair days, the baby has a fairly regular sleep routine. "Fairly regular" being the key subjective phrase.

3. Until your child is some uncertain older age in the very distant future, sleep will always be an issue: she didn't nap, or she napped too long and won't go to sleep, or she won't go to sleep at night, or she falls asleep but wakes up during the night, or she wakes up way too early in the morning, or she'll only sleep in your bed, or with the door open or the door closed or the door half-open with the sound machine on medium high at the ocean waves setting, and on and on and on.

Can you tell we're going through a rough spell in the sleep department?!?!?!

UGH.

Odds and Ends

Hannah's evaluation with the physiatrist is set for February 5th. I'm both excited and anxious, as I always am when we take her to appointments like these. I'm excited to see what he has to say about her potential for independent walking and suggestions for different equipment that might be better adapted to her size and her needs (i.e., the walker we currently have is one that was borrowed from a kid who outgrew it and it is currently lacking the proper feet so that it doesn't roll backwards if Hannah's feet slip out from under her). I'm hopeful that he will have tips, tricks and suggestions that will help her progress toward that independence more quickly.

But I'm also anxious. First off, I would rather be anywhere than be taking my kid to a rehab clinic because I would rather that she not need to be "rehabed" from anything. I also know that while I have come to some acceptance with the fact of her delays, it's still a shock when someone in a white coat reminds me of it. And what if the hopes that I have for this visit don't come to pass? What if there is not much more we can offer Hannah except the patience to let her get where she's going on her own time frame? Lastly, horror of all horrors, what if I cry? I have yet to make it through any kind of doctor's appointment, evaluation, or meeting with Hannah's service providers without welling up at some point during the visit, but I hate when it happens and I always dread the moment when I know it's coming and there's nothing I can do to stop it.

T-minus 22 days until the appointment. Deep breaths, deep breaths...

Secret Lives of Twins, Take II

The twin phenom just keeps getting more and more fun to watch as the girls get older, more expressive, and more social. Of course it's not always peace and love. Often it's "Hannah don't look at me!" or "Isabelle don't sing that song!" or the ever-constant "MY TURN!" But a lot of the time it's also really cute, and funny, and heartbreakingly touching.

This pic was taken tonight at dinner. For those of you who are shy about private matters such as bathroom habits, you might want to skim this story. Anyway, for whatever reason, when Isabelle is pooping she sometimes likes to hold our hands. She tends toward the constipated end of the spectrum so I think she likes the comfort while she struggles! So tonight at dinner, Isabelle noticed that Hannah was doing her business (which happens most often when she's in the high chair eating). So she turns to her and says, "Are you pooping over there, Hannah? I'll hold your hand."

The theme of Isabelle wanting to take care of and help Hannah comes up a lot between the two of them. I don't know if it's just who she is or if it's at all related to her sense that Hannah might need a little extra help in some areas of her life. Or most likely, she is just mirroring what she sees B and I doing so often. Whatever it is, it's a beautiful thing and when it happens, I often have to turn away so they don't see me crying. Like the other day, when I was in the kitchen and Hannah and Isabelle were in the playroom and Hannah fell from a sitting position onto her back. Hannah started saying, "Get up, get up," and I told her I'd be right there. Isabelle promptly walked over and said, "I'll help you, Hannah. Sit up straight, Hannah. Here you go." And she grabbed hold of her arm and tried to help Hannah right herself.

As hard as it is sometimes to raise twins, especially when one twin has special needs, these are the times when I feel so grateful that Hannah has Isabelle in her life. And that Isabelle has Hannah.

"The System"

Today we sat with Hannah's PT, OT, early intervention coordinator and the coordinator of our school district's education-based special needs services and discussed the various options once she "graduates" from the birth-3 program. We spent a good chunk of time last night writing out the questions we had and I felt confident that we would walk away with a clear understanding of the next steps we need to take and the resources available to help us along the way. B and I are both pretty intellectually curious folks and we are also very comfortable advocating for ourselves and our girls.

For the most part, I got a better handle on the various terms ascribed to the different services and programs (ISFP, IEP, EEE, CSHN, xyzblahblahblah) and I think I know what happens next:

• In early summer, we will meet with the education coordinator again, get Hannah officially enrolled in the early ed program, and decide whether or not we want to send her to our county's special ed preschool;
  
• We'll also get Hannah an appointment to be seen by the physiatrist at the rehab clinic so that she is properly evaluated for and fitted with whatever equipment she needs (TrippTrapp chair, walker, orthodics if necessary);
  
• We'll find out what, if any, insurance coverage we will have for in-home PT/OT services.

But there are still facets of this system that are confusing to me. Which got me thinking: if this is still confusing to me, a fairly well-educated person with lots of resources available to me (financial and otherwise), what about someone less fortunate? Someone who has more pressing matters to deal with (putting food on the table, for example) that leave little time or mental energy to prepare for a two hour meeting with various service providers. What happens to those families and those kids? Do they fall through the cracks or does the system provide safety nets for just this sort of reason? And isn't the system supposed to be for exactly these families to begin with?

January thaw

It was in the 60s here today which for this neck of the woods at this time of the year is amazing. The birds were out, the snow is almost totally melted, and our little village was alive with people out and about and smiling. The warm weather couldn't have come at a better time, as we are just getting back out of the house again since right before New Year's, when we were all, one by one, felled by a nasty stomach bug that just wouldn't go away.

I'm reminded once again that the trauma of the girls' birth and Hannah's motor delays is still so close to the surface. It's especially difficult when Hannah gets sick because it really takes so much out of her. She's barely 19lbs soaking wet (and she's 27 months old) so she has very little reserves. When she doesn't eat, vomits and has diarrhea for days on end, I start to think about how hard we worked for every one of those 18 lbs, 12 ounces and I just feel defeated. And she is defeated, too. On a good day, Hannah gets totally pooped out after minimal physical activity and needs some kind of high calorie food to get her going again. When she's sick, she can barely keep her head up. The other day she literally did not move from the floor where I laid her down while I put a few dishes away. It's such a stark contrast to Isabelle, who like most kids, I assume, has to be pretty bad off to be so inactive. Sure, she slows down and is less feisty than she usually is, but she still has an interest in and ability to move around and play.

This latest round of sickness had me especially panicked, I think because Hannah had been doing so great and making some really nice progress, and this felt like a setback. It also happened at the height of the post-holiday winter blahs, a hard enough time to feel sunny and light.

The good news is, she's eating well again and getting some of her energy back. And today was an absolutely beautiful, spring-like day.